Killer Kath v Cancer Fundraiser

A lot has happened since my last update and aside from appearing in the Manchester Evening news, I’ve been keeping a very low profile.

The disease which until now has been ‘low-volume’ and asymptomatic has suddenly turned aggressive, causing all sorts of hideous side effects like breathing difficulties; bowel issues and oedema. Lymphangitis is affecting my lung function, which means I now require oxygen 24/7 and my liver function is so poor that chemotherapy is no longer an option.

These new symptoms resulted in me being admitted to the Christie on Easter Monday where I spent around 10 days. I was finally discharged last Friday and ambulanced up to Scotland where I’m resting and recuperating at my parents. Don’t get me wrong, treatment at the Christie is 5 star, but the views here in Glenfarg are infinitely more therapeutic.

The past few weeks have been the toughest I’ve ever endured. In the space of a couple of months, I’ve gone from tramping over hill and dale, to barely being able to walk a few hundred metres unaided. It’s been quite a lot to get my head around, hence why I’ve been keeping a low profile.

Treatment wise I’m really scraping the barrel now. As a last ditch attempt to buy more time I’ve been put on two different hormone therapies, Letrozole and Faslodex. The cancer cells occupying my body seem to be resistant to most drugs, but I’m hoping that these bad-boys will get me back on an even keel, or at least stable enough to get to Germany.

You might have noticed a sudden flurry of activity on the fundraising front. If not HERE IS THE LINK!! This is the work of my amazing friends and family, who are doing everything they can to raise the funds to get me to the Hallwang clinic in Germany.

As I explained in my last post, Germany has one of the highest cancer survival rates in Europe. Their clinics offer a more integrative approach along with a wider variety of treatments and off-label drugs than the UK.  The treatments I’m hoping to have there include Peptide Cell Vaccines and Immunotherapy.

If I’m well enough for the journey, I’m hoping to fly out to the Hallwang clinic next Sunday, for a face to face consultation. The majority of the cost is for Peptide Cell Vaccinations. Then if the tumour analysis throws up specific mutations (as I hope it does), the next phase of treatment will include treatment with Immunotherapy drugs (immune checkpoint blockers). If I’m happy with everything and providing I reach my fundraising target, the plan is to stay on at the clinic and proceed with the first stage of treatment.

So far we’ve raised around £10,000 via generous donations and ticket sales from the Charity Ceilidh. There’s still a long way to go to reach the £40,000 target but I know with your help, we can smash it.

The ceilidh in Manchester looks like it’s going to be both an amazing night and a sell out. A night not to be missed! There are some incredible raffle prizes on offer on the night including a Backpacker Tour of Scotland; Protected Species Rainwear; Champagne; Tickets for Paul Heaton & Jacqui Abbot at Delamere Forest; a Unicorn Organic Food Hamper; and vouchers for Beardmore salon in Manchester amongst many other fantastic prizes. And I promise there won’t be a bottle of Blue Nun in sight!

As well as the ceilidh, there are many more fundraising events in the pipeline. Friends are running marathons and Tough Mudders and there are bake sales a plenty!

I don’t like being the centre of attention, so it’s taken a lot of courage for me to ask for your help. The ceilidh has been on the cards for about a year. It’s taken that long for me to agree! I just wish I hadn’t let things get to this stage, before asking for help. Every day is precious to me now and the pressure is on to get me to Germany as soon as possible.

It’s been incredibly difficult few weeks but I’ve been surrounded by people that love and care for me. They’ve shielded me from the outside world, made me feel okay about getting in a wheelchair, helped me get dressed in the morning, brought me treats in hospital and rubbed my swollen puffy feet, every day!

I’d be so grateful if you could contribute to MY FUNDRAISER and share it with everyone you know, so I can repay the people that have given so selflessly to me over the last few weeks. I’ve got a lot of foot-rubs stacking up!

With much love and gratitude, Kath xxx

PS. Finally I’d like to apologise for not keeping everyone in the loop over recent weeks, but it’s been an incredibly difficult time for me and my loved ones. Even sending a text uses up more energy than I have to spare. Please be patient as I’m not able to reply or update everyone individually. Knowing that you care is enough x

 

Alternative treatments & German clinics

Alternative or Integrative Treatments

Those of you who follow my blog will know that I’ve been exploring alternative treatments (treatment not available on the NHS) for some time. However, there’s a lot of quackery out there in cancer world and you have to tread carefully if you don’t want to be ripped off. I myself was recently fleeced (thankfully by only a few hundred pounds) by one such ‘guru’.

I use the word alternative loosely, because the treatments I’m exploring are more integrative than alternative. They include innovative conventional treatments such as Peptide Vaccines and Immunotherapy along with evidence-based supportive therapies such as Hyperbaric Oxygen Therapy and Hyperthermia. Whackier alternatives like shark cartilage and snake venom don’t appeal to me, unless of course there is evidence backing them up.

Proactive patients looking for viable alternatives and the newly diagnosed often find themselves swamped with information. Panic sets in and internet research becomes an obsession. Hours and days are spent trawling science journals and chat forums for the latest developments in treatment and clinical trials. This is mostly how I spend my time.

Cancer treatment in the UK is strictly regulated. All treatments have to be clinically proven before becoming available to the general patient population. This is good in lots of ways, because not only do patients know they are getting evidence based treatment, but that they are protected from quacks and charlatans. On the other hand, it means that doctor’s are restricted by the treatments they can offer.

A good example of this is the growing use of ‘off-label’ or repurposed drugs by many patients. The drugs I get from the Care Oncology Clinic in London are all prescribed ‘off-label’, which means they are prescribed for an alternative use. Metformin is one such drug, which as well as being a diabetes drug has shown anti-cancer properties in numerous trials.

I’m lucky to be treated at one of the best cancer centres in the world (The Christie), however even they don’t have access to every new development. Immunotherapy drugs already approved in the US, are still being trialed in the UK.

Immunotherapy is the ‘magic-bullet’ all cancer patients are chasing today, however being accepted onto a clinical trial is often a case of luck. You have to be in the right place and have the right cancer at the right time. Even if you find a suitable trial, the eligibility criteria are so strict that many patients are deemed ineligible. In my case, brain metastases rule me out of the majority of trials.

German clinics

Despite having disease in my liver, lungs, bones and brain, I’ve been able to enjoy a reasonable quality of life until recently. Unfortunately the last two drugs have failed and CT scans have shown progression in all areas of my body.
The disease and it’s treatments are beginning to take their toll. This has forced me to explore treatments not currently available in the UK.

Germany has one of the highest cancer survival rates in Europe. Their clinics offer a more integrative approach along with a wider variety of treatments and off-label drugs than the UK.  Peptide Cell Vaccines, Immunotherapy, Ozone Therapy and Photophoresis are offered alongside more conventional treatments like chemotherapy and radiotherapy.

There are no guarantees with any cancer-treatment, however I feel that going to Germany will give me the opportunity to tackle the disease in a different way, whilst giving my immune system a much-needed boost.

This is where I need your help. Treatment at a private clinic in Germany doesn’t come cheap and having been a cancer patient for nearly 4 years, I’m not in a position to fund this myself. I do have some pride so it’s taken a lot of courage to ask for your help.

So here it is my latest fundraiser: https://www.youcaring.com/killerkath

You were all so generous two years ago when I asked for your help in raising funds for my Tumour Profiling.

I’d be so grateful if you could help me again xxx

PS. For those in the Manchester area, friends are organising a charity ceilidh on my behalf. Come along and have a twirl!!

 

I’m fine

I’m fine

“I’m fine” must be the most over-used phrase in the lexicon of the cancer patient.

Saying “I’m fine” makes life easier for everyone. It means you don’t have to go into long winded explanations about your illness; it prevents social awkwardness; and it gives you a temporary reprieve from your main role as ‘cancer-patient’. This can be an exhausting charade to maintain and inevitably the truth sometimes creeps out.

Like last week, when I was admitted to A & E, and a student nurse chose the wrong moment to ask how I was doing. As I hurled into the sink, all I could summon was “I’ve been better”. When they finally found me a bed after a traumatic 14 hours in A & E, I was a sobbing, broken mess.

I’m fine

I’ve not been feeling right for ages: nauseous, fatigued and increasingly wheezy/breathless. I’ve had the wheeze checked out several times but it got so bad that I was struggling to get up stairs without getting out of breath. Apparently the metastases in my lungs are too small to be symptomatic, so it was put down to possible adult onset asthma. Bearing in mind that I climbed Mam Tor at the end of January with minimal effort, I struggled to accept this diagnosis.

We’re great at self-diagnosis, us cancer patients, so when I went to A & E last Monday, I assumed they’d find a blood clot or a massive tumour blocking my airways. It turns out that I have pneumonia. I was so relieved. This is the bizarre world I occupy where ‘anything but more cancer’ is seen as a good thing.

My stay in hospital wasn’t exactly a spa break. Admittedly a hospital bed is a step up from a trolley in A & E, but the respiratory ward isn’t an environment conducive to rest and recuperation. I left feeling more sick than when I arrived.

I can’t fault the medical treatment or the nursing, apart from the domestic who had a serious ATT-I-TUDE and kept attacking my bed with her mop. It’s probably because on top of the pneumonia, I’ve been having partial brain radiotherapy. My poor body has been attacked from every angle. It’s no wonder I feel anything but fine.

I had my final radiotherapy session today. This is me ringing the ‘Final Treatment Bell’ earlier this morning. I celebrated with a lie down.

Wit

The nausea-inducing roller-coaster of cancer treatment was eloquently portrayed by Julie Hesmondhalgh, in a play a I recently saw at Manchester’s Royal Exchange. In the award winning ‘Wit’ Julie played a Stage IV ovarian cancer patient, Vivien, a university professor, taking part in a clinical trial. Most of the action takes part in a hospital bed. It doesn’t sound like scintillating viewing but it was one of the funniest and profoundly moving pieces of theatre I have ever seen.

It helped that the subject matter was pertinent to my situation and it was an incredibly realistic portrayal of the Stage IV cancer journey, one often ignored by media-friendly tales of heroic survivor-ship.

The play’s accuracy to the subject was near faultless: the de-humanisation of the diagnostic process (I sometimes still cry when I have a scan); the contrasting bedside manner of medics (clinical) vs nurses (compassionate); the over-analysis of every medical encounter by patients; and the brave face we put on for those around us. Even when she is close to death, Vivien’s stock reply is “I’m fine”.

By the end of the play I was a blubbing, quivering wreck. I wish I’d seen it earlier in January because at least I’d be able to recommend you all to go and see it, but it’s finished now. Sorry. There’s an HBO movie version with Emma Thompson which I’ve yet to see, but it might be worth a watch:

Everything’s fine

Since being discharged from hospital on Thursday evening, I’ve barely left the couch. As someone who’s normally really active, I’ve found this really difficult. Even standing up feels like an effort, so I’ve had to find new ways to occupy myself. I’m still working my way through Curb Your Enthusiasm, although I’ve had to ration this, because it hurts when I laugh. The episode I watched this afternoon reminded me that I’m not the only one telling fibs about my feelings.

So the next time you ask your friend with Stage IV cancer how they are doing, do a little probing or even better give them a ‘Larry Staredown‘, because the chances are they’re probably not fine.

 

 

Living with Uncertainty & Demonic Bus Drivers

Living with uncertainty

Sometimes referred to as the ‘Sword of Damocles’, otherwise known as a pile of crap. This is the terrifying precipice those of us with metastatic disease occupy much of the time.

If you’re living with metastatic disease, you could have 6 months, 6 years or even longer. There’s no way of knowing.

A common reaction to those dealing with this uncertainty, is that “you might get run over by a bus tomorrow”. It’s always nice to be reminded that, as well as having a life-limiting disease, you’re still at risk of being run over by a bus, but try living with a demonic bus driver following you around night and day. He chases you through your dreams. He’s there revving his engine when you wake in the morning.

When the drugs are doing their job and everything is stable, you might get some respite, but he’s never far from your door.

My demonic bus driver has been on full throttle since November, when I found out that the EE combo (Everolimus/Exemestane) is no longer working. Since then it’s been an anxious time of waiting for treatment decisions to be made; finally starting a new drug in December (low dose cyclophosphamide), only to find out last week that this drug probably isn’t working either.

http://www.davidshrigley.com/

It can be hard to function in the ‘normal world’ with this kind of uncertainty hanging over you: What drug will they try next? Will it work? What if it doesn’t work? These are the questions that keep me awake into the wee small hours.

I find it difficult to cope with everyday life with this continual background stress. The small-talk people make in everyday life seems so trivial when there’s a real possibility that your days are numbered. When friends and family asked me what I wanted for Xmas, I couldn’t think of anything. There’s no “Gift of Life” on an Amazon wishlist.

Looking well

This might seem a hysterical over-reaction to those around me, when outwardly I look so well. This is one of the strange paradoxes of living with Stage IV. Despite having a body riddled with disease, many of us look healthier than patients with primary or early (Stage I- III) disease.

There are several reasons for this. The main one being, that many of the new drugs used to treat Stage IV are more targeted and less invasive than those used for treating primary disease.

With primary disease, the big guns are drafted in, with chemotherapy often leaving patients as bald as a coot and as sick as a dog. With secondary disease it’s different. Treatment is ongoing and quality of life becomes just as important as controlling the disease. Our medical teams have the difficult job of finding a balance between the two.

Treatment for secondary disease can still make you ill, but if you’re lucky you find a drug that not only keeps the cancer at bay, but which allows you to have a reasonable quality of life. This was the situation I found myself in last year on the EE combo, where I enjoyed around 8 months of stability with very few side effects, aside from the odd mouth ulcer and a little fatigue.

With no visible symptoms of disease and drugs with minimal side effects, it’s easy to forget that you have a life-threatening illness. Denial is a comfortable retreat when everything is stable, but when the shit hits the fan, the demonic bus driver is back with a vengeance.

http://www.davidshrigley.com/

More recently, physical symptoms have made it increasingly difficult for me to bury my head in the sand. Recent blood tests showed that my liver function is all over the place, I’ve had an increasingly painful left hip and I’ve been having ocular migraines (a completely new symptom).

I’m back in treatment limbo: waiting for scan results; investigating different treatment options and potential trials; as well as looking into ‘alternative’ cancer treatment centres. My situation feels like it’s becoming increasingly desperate.

For this reason, my business Killer Kilts has been put on the back burner for the time being. I have no motivation to run a business when my life hangs in the balance.

My body is riddled with cancer – I have cancer in my liver, my lungs, my brain and my bones – yet to look at me you would never know.  I have days when I’m really exhausted and sometimes it’s hard to gauge how far I can push myself. This weekend I walked up Mam Tor, my first big hill in ages, which felt like quite an achievement for someone with Stage IV.

Looking so well can make it difficult for friends and family to comprehend the gravity of your situation. Breast Cancer is often viewed as the easy cancer to have, but the 5 year survival rate for Stage IV breast cancer is less than 20%. This means 80% of women with Stage IV don’t make it to 5 years beyond diagnosis.

This is evident in the support groups I belong to, where we’ve lost so many girls recently, it’s become quite terrifying. Nearly a quarter of the girls I met at the Breast Cancer Care ‘Younger Women with SBC event‘ in October 2014 have died in the last year: Jane, Carol, Claire, Charlotte, Alison, Emily, Rashpal, Lynn and Dawn. Not only were these friends, they were wives, sisters, daughters and mothers, young women with a future ahead of them. With 12,000 deaths a year in the UK from secondary breast cancer, these women are just the tip of the iceberg.

Losing friends is one of the toughest things about living with this disease. We mourn our friends passing and pray that we’re not next. Ours is a precarious existence, where we cling on to hope and drift around in denial, because the reality is often too horrific to contemplate.

If you’d like to do something to support women (and men) with secondary (Stage IV) breast cancer you can donate to one of the following charities or sign up for one of their campaigns:

Second Hope is a brand new UK charity and the only one specifically for people living with advanced breast cancer. Their focus is on raising awareness, providing support, campaigning and funding research into the disease.

Breast Cancer Now campaigns and funds research with the aim that by 2050, no-one will die from the disease.

 

 

My A-Z of Breast Cancer Awareness

It’s that time of year again. A month which used to pass me by, but which I now dread is upon us – October or Pinktober is BREAST CANCER AWARENESS MONTH.

For those of you who aren’t yet ‘aware’, the pink-ribbon is the international symbol of breast cancer awareness and Pinktober is Breast Cancer Awareness Month.

During Pinktober people interpret and express their awareness in many different ways. You can light up a global landmark in pink fairy lights, as that icon of bustiness Liz Hurley does every year (for Estee Lauder); you can get your knockers out to promote ‘awareness’ as many celebrities like to do; you can wipe your backside on pink-ribbon toilet paper; you can drag out the obligitary pink feather boa for ‘Wear it  Pink’; or you can simply express your awareness by taking part in whatever this year’s ‘Breast Cancer Awareness’ Facebook game happens to be.

This is not awareness

Pinktober generates mixed feelings among the Breast Cancer community. Whilst it has been a spectacular success in celebrating survival and raising money, there is still very little discussion around cause and prevention, and for those living with secondary or metastatic disease (the one that kills you), it’s definitely not a cause for celebration.

Neither is this

For many, the saccharine sweet, surgically enhanced message conveyed by the media is completely at odds with the harsh reality of the disease. And thanks to the pink feather-boa effect, Breast Cancer is now perceived as CANCER-LITE. It’s no longer viewed as a life threatening disease, despite the fact that IT KILLS 12,000 WOMEN IN THE UK EVERY YEAR.

A strategically placed pink ribbon does not = awareness

The media is saturated with stories of hope and survivorship: no one wants to be reminded of the fact there that THERE IS STILL NO CURE FOR BREAST CANCER or of the people who’s lives are devastated and cut short by the disease.

This is my third October as a breast cancer patient and I’ve had enough. Instead of sitting here in a rose-tinted-rage, I want to set the record straight and share some of the wisdom I’ve acquired since my diagnosis. I’ll be bugging the hell out of you for the whole month of stuff about awareness. It won’t be pretty and it definitely won’t be pink, but if I can persuade you to read at least some of my posts, maybe you will learn something more about this disease.

Pretty, pretty good!

In the words of my misanthropic hero, Larry David, this week has been ‘Pretty, pretty good‘!

I had some good news which hasn’t quite sunk in yet. I found out the tumours in my liver and lungs have either shrunk or remained stable. I now have one, small but stable tumour in my liver and a few small tumours in my lungs. The bones mets (metastases) are also showing signs of healing.

I didn’t expect to be here now. When I was diagnosed with brain mets in February, things were looking really bad. If you remember, around that time I also had progression in my lungs and liver. I assumed it was the beginning of the end.

I’m not getting too complacent because this can happen with treatment. A drug will work for a while until the cancer becomes resistant, leading to further progression.

But, I feel really well at the moment. I’ve recovered from surgery and the side effects of my current drug regime are minimal. This means I’m getting my fitness back and I’ve felt well enough to go hill-walking over the past three weekends.

The synergism of the Care Oncology drugs with regular treatment (Everolimus and Exemestane) seems to be working really well for me, as I’ve had two lots of good scan results since starting this combination. 

For the first time in a year I’m beginning to feel like a normal person instead of a cancer patient. You’ve got no idea how good that feels.

I’m off to Italy on Friday, but I’ve got lots going on when I return. Killer Kilts relaunch is planned for the beginning of October, I’m doing my yoga foundation with the British Wheel of Yoga and I’m thinking about going back to university. Life is pretty, pretty good!

Living with Secondary Breast Cancer at The Christie

Please say hello and welcome to Eli!

 

Eli the elephant is the new logo for the Secondary Breast Cancer focus group at The Christie hospital in Manchester, a group which I’m proud to be part of.

The Pledge

The Secondary Breast Cancer focus group at The Christie was formed following the launch of the Secondary Breast Cancer pledge in March 2014, a national initiative aimed at improving standards of care for people diagnosed with secondary breast cancer.

I’m lucky enough to get treated at a hospital where I have access to a clinical nurse specialist (or Breast Care Nurse), along with many other support services. However for many living with Secondary Breast Cancer, this isn’t the case.

Many patients don’t have access to a clinical nurse specialist or are living with unnecessary pain because they haven’t been referred for palliative care. The Pledge aims to ensure that all patients with secondary breast cancer get the highest possible standards of care.

The focus group

When I joined the focus group earlier this year, they were working on a project with Breast Cancer Care, to update information contained in secondary breast cancer resource packs. Ideas and feedback generated by the group, are now being put into practice, and will be incorporated into the resource packs given to patients at diagnosis.

More recently the SBC team at The Christie received funding from Macmillan and Manchester Cancer to hold a series of  “Living with Secondary Breast Cancer” events at The Christie.  At the first “Living with Secondary Breast Cancer” day in July, more than 50 patients and carers attended, with talks from various cancer specialists, along with workshops for both patients and carers.

 

 

Secondary cancer can be a lonely and isolating experience for patients and events like this are a lifeline. For as well as allowing patients to gain knowledge and access local support, it enables them to meet others living with the disease.

The next event is taking place on Wednesday the 21st of October and is open to all secondary breast cancer patients at The Christie Hospital in Manchester. If you, or anyone you know, are affected by secondary breast cancer, then please come along. Patients are welcome to bring partners, friends or relatives. For more information or to book a place, please contact:

claire.gaskell@christie.nhs.co.uk or call 0161 446 3996

 

 

Pills, thrills and bellyaches

I feel like I’ve not written anything for ages. It’s not that I don’t want to write, I’m just bored of writing about ‘My Cancer Journey’. I’ve been doing this for 3 years and there’s only so many ways you can report scan results. And the other stuff, well that’s my life now.

I know I’ve made a rod for my own back, because back when it was all new and scary, I reported every minor detail of treatment. Now, if there’s a long gap between posts, there’s an assumption that something must be wrong. I suppose what I’m trying to say is that I no longer feel the need to tell the whole universe, every time something happens. So if I’m not posting, it’s either because I’m busy or I can’t be arsed.

The last few months have been very busy with holidays to Fuertaventura and France, along with all the behind the scenes stuff I’m doing to get Killer Kilts relaunched.

Me on holiday

On the treatment front there is no major news to report, although I did get my ovaries removed a few weeks ago. I suppose that’s quite a biggie.

I was feeling really well before the operation, despite my ‘full-house’ of tumours. My fitness levels were getting back to pre-cancer levels and I was feeling super-fit after a yoga holiday in Fuertaventura.

Despite feeling like super-woman before surgery, it’s taken me much longer to recover than I expected. It’s easy to become blasé about medical stuff (even surgery) when you spend as much time in hospitals as I do, and because it was keyhole, I assumed I’d bounce back quickly. I don’t think I was prepared for how hard the oophorectomy would hit me, physically or emotionally.

I thought I’d come to terms with the fact that I will never be a mother, but getting your ovaries removed makes this pretty damn final. The ovaries are an intrinsic part of being a woman and the hormones they produce affect everything from your menstrual cycle to your mental state. It’s no wonder I’ve been feeling out of sorts.

The oophorectomy should have a positive effect on my hormone driven cancer, however there are lots of potential long-term side effects of a surgically induced menopause, as I discovered on an ill-advised Google search in the days following surgery. These include increased risk of cardio-vascular disease; osteoporosis and cognitive decline including, increased risk of dementia. I’m already on biphosphonates (bone-strengtheners) due to the bone metastases, so that’s the osteoporosis covered. It’s the CVD and dementia I’m worried about. Unfortunately I can’t take HRT because my cancer is hormone driven.

Obviously I’m being optimistic, as these are things that will potentially affect me in later life, but in my post-surgical loopy state of mind, I began to question whether I’d made the right decision. I Googled “can you get your ovaries put back in?” and even contemplated calling the hospital to see if they still had mine. I wondered if perhaps they keep them on ice, for indecisive patients like me? A friend in my support group said she felt the same and was hopeful when she found stories of women who claimed their ovaries had grown back.

I went on holiday less than two weeks after surgery and in hindsight, this wasn’t the best idea. Patients are advised not to lift anything heavier than a kettle for the first few weeks after surgery, so lugging a suitcase around wasn’t ideal. Must remember to check my calendar the next time I get any major organs removed.

I’ve not had any major menopausal symptoms, apart from the odd hot flush, although it was incredibly hot in Paris, so it was hard to tell whether these were caused by the extreme heat or lack of hormones. Now that I’m back in rainy Manchester, I think they were hormonal.

Physically I’m still feeling really knackered and this isn’t helped by the Kath ‘crash and burn’ recuperation plan. If I have a day when I’m feeling okay I tend to overdo it, and end up setting myself back. I went swimming the other day and traipsed around a flower show yesterday, so today I’m completely wiped out. I’ll never learn.

My weekly pill consumption

My fatigue might also be due to the fact that I restarted all the nasties on my birthday last week. My weekly pill consumption is so vast (Everolimus, Exemestane, Metformin, Doxycycline, Aspirin, Hayfever tablets, Statins, Mirtazipine) that I had to buy a humungous pill-organiser to keep me on track. One or two are supplements. (Pomi-T, Coriolus mushroom extract and Fish Oil) but the majority are hardcore pharmaceutical products.

Let’s hope this ridiculous cocktail keeps on working!

PS. I’m reading a really good book by Professor Ben Williams (I mentioned him in my previous post) who cured his cancer with drug cocktail therapy – recommended reading for anyone affected by cancer: Surviving “Terminal” Cancer: Clinical Trials, Drug Cocktails, and Other Treatments Your Oncologist Won’t Tell You About

Dirty Drugs

This was a post I started a few months ago in the midst of brain-mets mayhem. I didn’t write much around that time, mainly because my brain had been fried and I found it difficult to string a sentence together. Thankfully my brain has recovered, or at least most of it has.  The gamma-knife seems to have affected the spelling part of my brain so please forgive the odd spelling mistake.

I had some goodish news last week. My latest CT-scan results show that the tumours in my lungs and liver have either shrunk or remained stable. Apart from NED (no evidence of disease) or remission, shrinkage and stability are the two words you hope for when you have Stage IV (advanced, secondary, metastatic) disease. But, and there’s always a but at these appointments, I wasn’t surprised when they told me that I now have metastases (or secondary tumours) in my bones. A mixed bag of results, but as a wise friend pointed out, the bones mets won’t kill me.

The build up to these appointments is massive and it’s something you never get used to. When you’ve been in the game as long as I have, you know that a positive attitude has naff all effect on scan results. There’s no point building yourself up for good news. On the other hand, you don’t want to be too pessimistic. Try as you may to box it away, it’s incredibly stressful having this continually simmering away in the background. If you’re anything like me, you spend the last few weeks, pre-scan, being a complete cow to everyone you know.

I hope so…

Unless they’ve got stable disease, the majority of patients with secondary cancer go through this rigmarole every 3 months. Beginning with shock/elation/disappointment at the latest scan results; followed by acceptance of new symptoms or side-effects; leading up to the scanxiety of the next scan.

My recent scan results were a bit of a shock, and not just to me. The last drug I was on (Tegafur) didn’t work, and I’ve had very little in the way of active treatment since my previous scan at the start of February. I worked out that I’d only had 12 days of Everolimus and 2 months of Exemestane before my most recent scan. The Exemestane wouldn’t have worked immediately as I had to restart Zoladex injections (the ovary switcher-offer) in order for it to be effective. Not long enough for either drug to have had much of an impact.

However there’s potentially another explanation for my good scan results.

Following scan-mageddon in February an article in my news-feed caught my attention. The reason this particular article grabbed me, was because it talked about using everyday drugs such as antibiotics to treat cancer. After being given a prognosis of less than a year, the professor mentioned in the article ‘cured’ his untreatable brain cancer with a cocktail of everyday drugs. He recently celebrated 20 years of being disease free.

Fast forward 3 months and I’m now taking part in a long-term ‘study’ at The Care Oncology Clinic in London. They prescribe a combination of ‘dirty drugs’ which I take alongside my regular treatment. In addition to Everolimus and Exemestane I now take the diabetes drug Metformin, a worming tablet called Mebendazole, an antibiotic Doxycyline along with statins.

The so-called dirty drugs work by targeting multiple receptors or cancer-signalling pathways. Metformin for example reduces blood glucose, lowers IGF-1 & is also an mTor inhibitor (like Everolimus). There are many current trials using Metformin as an anti-cancer agent. Mebendazole is believed to slow the growth of brain tumours. Whilst Doxycycline has been shown to reduce tumour burden in breast cancer bone metastasis.

I have now what is known in the trade as a ‘full house’: lungs, liver, brain, bones. There aren’t many places left for the cancer to go. But strangely I feel really well, better than I’ve done in months. My body is responding well to a lower dose of Everolimus and as yet I have no major side-effects, apart from loads of energy. Result.

I had so much energy last weekend I began to wonder if something was wrong. I managed to pack in yoga, circuit training, Killer Kilts photo-shoot and a 12 mile cycle. It’s so nice to have normal energy levels again.

I’ve changed so many things in the last few months (my diet, my drug regime and the additional dirty drugs) it’s impossible to say what exactly is working, but I’m doing something right. Maybe it’s a combination of things. If you want to know more about the Care Oncology Clinic, drop me a line or contact them directly.

http://www.independent.co.uk/life-style/health-and-families/health-news/cancer-drugs-trial-for-when-standard-treatment-is-not-viable-shows-incredible-signs-of-success-9804279.html

http://www.pharmaceutical-technology.com/features/featurebetter-together-combining-therapies-to-slow-down-cancer-growth-4454747/

Going Ketogenic

During a recent stay in hospital, one of the nurses commented that I look happy and seem to be coping really well. I suppose to an outsider I do. Most of the time I put on a brave face and soldier on because, let’s face it, what choice does anyone in my situation have?

One of my favourite coping strategies is denial, or as a therapist at a Breast Cancer Care event labelled it “temporary sanctuary”. I find my temporary sanctuary in cooking, hill-walking, yoga, meditation, eating curry, sewing and colouring-in (my new favourite hobby). All of these things enable me to put cancer to the back of my mind. Of course this only works during times of stability. It takes something trivial, like shit scan results (okay that’s quite big), and the normally contained panic hits you in the face like a wet kipper, which leads me nicely onto my next subject, the ketogenic diet.

The bad news I received in February (brain mets and progression elsewhere) has elevated my cancer threat level from moderate to critical. No more time for dilly-dallying  around and pretending this isn’t happening. I saw the scans of my brain. This is real. I have cancer. It’s spreading and I don’t like it.

I have been searching for the elusive cure since my primary diagnosis on 1st June 2012. I have researched and ingested every supplement and cancer fighting food known to man. I’ve consumed forests of broccoli, mountains of mushrooms, gallons of green tea and juiced till I’ve turned orange. I have over-dosed on Vitamin D, dabbled with CBD oil, but not cannabis oil cos that’s illegal in the UK, although I’m happy to accept donations from charitable growers. Hell, I’ve even done a bit of Aspirin. There aren’t many things I haven’t tried or at least considered . Lack of evidence usually puts me off, which is why I’ve never wasted any money on Essiac tea or apricot kernels.

By the way if you want to know how to piss off a secondary cancer patient ask them if they’ve ever heard of Gerson Therapy, Cannabis Oil or considered juicing. I can guarantee you’ll be hit in the face with a wet kipper.

I’ve tried numerous dietary regimes. I’ve done and still do intermittent fasting as well as water fasting on a regular basis. After watching ‘Fat sick & nearly dead’ I contemplated doing a 60 day juice fast until a friend pointed out that I’m not morbidly obese, nor is there any evidence that it cures cancer.

I came across the ketogenic diet during one of those best-avoided midnight Google journeys. The ketogenic diet is a low carbohydrate, moderate protein, high fat diet. Cancer cells require higher rates of glucose to function than healthy cells, so the basic principle of the ketogenic diet is to starve the cancer cells of their main fuel supply. It sounds simple but it’s not.

In a typical western diet around 50% of our daily calories come from carbs. Carbs include bread, pasta, rice, grains, potatoes and any product that contains or converts to sugar in the body. In the ketogenic diet for cancer, carbohydrates are limited to around 5%. Typically around 75-85% of calories will come from fat, 10% from protein and 5% from carbs. A useful comparison is the Atkins diet which is similarly low in carbs but much higher in protein.

The keto diet was first developed in the 1920’s when it was discovered that fasting helped control seizures in children with epilepsy. Fasting wasn’t a long term solution and so the ketogenic diet was borne, which mimics the effects of fasting without starving the body. More recently it’s been shown to be effective in treating and managing certain types of cancer. I’ve posted a few links at the bottom of this post which show research into low-carb/ketogenic diets and cancer.

Before you all panic and say “but you can’t stop eating carbs!”, the body can function quite easily without carbohydrates. In fact the body can function without lots of things, we’re just conditioned to believe we need sugary cereal for breakfast, sandwiches for lunch and pasta and rice or potatoes for dinner.

When the body is starved of glucose (the end product of carbohydrates), the liver produces an alternative source of fuel called ketones and puts the body into a state called nutritional ketosis. This is an adaptive response, with ketone bodies acting as a back up system when there is limited glucose available, either due to starvation or carbohydrate restriction. This is how our ancestors survived when food was scarce. It’s also how some modern day hunter-gatherers such as the Massai and Inuit Eskimos survive.

There are different versions of the ketogenic diet. The restricted ketogenic diet works by creating an inhospitable environment for cancer cells. It can help treatment in several ways:

1) It lowers blood glucose and insulin. Cancer cells rely on high levels of glucose to function. By limiting the supply, cancer cells are less likely to thrive.

2) Cancer cells are metabolically inflexible so they are unable to metabolise ketone bodies. It’s believed ketone bodies may also have anti-inflammatory/anti-cancer effects.

3) It lowers circulating levels of cancer promoting hormones such as IGF-1 and TAF (tumour angiogenesis factor).

4) It increases free radical damage to cancer cells. Cancer cells have faulty mitochondria and without glucose they have no way of repairing the oxidative stress (which happens to all cells) caused by free radicals.

5) Following on from point 4, radiotherapy works by increasing free radical activity around cancer cells & research has shown that the effects of radiotherapy are enhanced during nutritional ketosis.

So what do you eat on this diet? When I first read about it I expected I’d have to munch my way through blocks of lard but it’s not like that at all, in fact it’s really healthy. On a typical day I eat the following:

Breakfast: Ketogenic Porridge (made from dessicated coconut, flaxseed, ground nuts, coconut oil & coconut milk)

Morning coffee: Bulletproof coffee (coffee + coconut milk or cream)  – it is delicious!!!

Lunch: scrambled eggs, mushrooms & spinach with ketogenic bread (made from nuts/seeds etc)

Snacks: avocado, olives, macadamia nuts or fat bombs (made from nuts, coconut, coconut oil)

Dinner: Chicken breast or Fish with green veg (all cooked in coconut oil)

The high fat percentage of the ketogenic comes from using oil with every meal – even the coffee is high fat. I thought I’d struggle with eating this way as I’ve always had a low tolerance for fatty/greasy food, but it’s actually been okay. The main problem I’ve had is sticking to the diet.

My nutritional therapist (http://www.carolgranger.co.uk) who is an expert in the ketogenic diet, advised me that it’s really beneficial to stick to the diet around the time of treatment and I was really good for the few weeks pre- and post-radiotherapy. However, I fell off the wagon during trips away with family and friends. It went completely pear shaped during a recent stay in hospital – hospital food is completely the opposite to ketogenic.

I’m now back on the keto wagon and feeling very virtuous after achieving nutritional ketosis for the last week. There are ways of measuring this which I will explain in my next post.

The rules are no grains, no legumes, no root vegetables and no sugar. So no bread, pasta, rice, beans, lentils or potatoes. No sugar at all (or anything that converts to glucose in the body) not even artificial sweeteners.

If you have cancer and want to know more about the diet:

1) This site has one of the most comprehensive guides to following the diet and explains how it can be used to manage numerous health conditions. I really recommend purchasing the e-book by Ellen Davis if you want to understand how the diet works and how to put it into practice:

http://www.ketogenic-diet-resource.com/

2) Patricia Daly’s (also a cancer patient) website and e-book also has lots of great resources and an e-book full of yummy recipes:

http://patriciadaly.com

3) This site isn’t necessarily aimed at people with cancer but has lots of great recipes and also a really handy app (if you have an iPad) for calculating your daily nutrient (and net carb) intake:

http://ketodietapp.com/Blog

4) Dominic D’Agostino: http://ketonutrition.blogspot.co.uk/2012/08/kd-for-cancer-treatment.html

I am relatively new to the keto diet but if you want to ask me anything I will try and help or at least point you in the direction of someone who can advise.

Research links:
http://www.nutritionandmetabolism.com/content/8/1/75

http://www.nutritionjrnl.com/article/S0899-9007(12)00186-4/abstract?cc=y

http://www.cancer.gov/cancertopics/types/lung/research/ketolung

https://clinicaltrials.gov/ct2/show/NCT01975766

Vita Blog: Starting treatment for secondary cancer in the brain

This is my latest blog post for Breast Cancer Care:

http://www.breastcancercare.org.uk/news/blog/starting-treatment-secondary-breast-cancer-brain

There aren’t many areas of my life not affected by cancer. Recently it invaded a whole new territory.

At the start of February, I was diagnosed with brain metastases – meaning cancer cells have spread to the brain. My most recent CT scan showed that the cancer has also progressed in my liver and lungs. In short, the drug I’ve been on since November hasn’t worked.

Disease progression of any kind is bad news. However, brain metastases, or mets, are the biggie that everyone with secondary cancer dreads.

The brain isn’t routinely scanned, because if cancer cells have spread to the brain this usually causes symptoms. I had no major symptoms. I’d had the odd headache, but who doesn’t? It was more paranoia that made me request an MRI scan. Unlike CT body scans, the results from a brain scan are often given on the same day. Instead of the dreaded weeklong wait for results, ‘scanxiety’ is confined to the 10 minutes after the scan.

I was cheerfully optimistic about the results. But when the radiotherapist delivered me a (never offered before) post-scan cup of tea, along with an ominous dose of ‘side head’, I knew it wasn’t good news.

Starting radiotherapy

The last month has been a whirlwind of appointments, planning and finally treatment.

Sometimes secondary breast cancer in the brain can be treated with surgery, but it’s most commonly treated with radiotherapy.

I was offered a type called stereotactic radiotherapy.

Stereotactic radiotherapy (also called Gamma Knife) is very precise and delivers high-dose radiation to the tumour, causing less damage to surrounding tissue. Each area is usually only treated once.

The first stage of treatment is planning. During this appointment, a plastic mould is made of the head and further scans are carried out to confirm the areas to be treated. Having my head set in molten plastic is one of the strangest experiences I’ve ever had. The mask is clamped to the bed to restrict movement even further. Not being able to talk or move for 30 minutes is incredibly difficult and I was dismayed to discover I’d have to wear the mask for even longer during treatment.

I had my denial head on (‘What cancer?’) for my first lot of treatment. My ‘just pretend none of this is happening’ strategy works quite well most of the time, but it proved ineffective when my head was screwed to a table for two hours. Cue panic attack.

Stereotactic radiotherapy is incredibly precise, so it’s critical that everything is correctly positioned. I must have been gurning when they made the mask, because my chin proved to be a problem and it took a long time to get everything correctly positioned.

Once everything was correctly aligned, including problem chin, treatment began. I’m not going to lie: this was not a fun day out, although I don’t make things easy for myself. Worried that my breathing was causing too much movement, I tried to restrict and hold my breath. Add to this a pint of green vegetable juice and nausea and you’ve got a toxic cocktail. It was like being tied to the plank of a very wobbly ship with a colander attached to my head.

I had the mask on for a full two hours which was really difficult. I was reassured that it can be removed at any time, but removing the mask can prolong treatment because everything has to be realigned. Given the options I decided to plough through without a break.

Two days later I went through it all over again, but this time I was prepared. For my second appointment I asked for sedatives and was also offered stress-relieving squeeze balls. Both of these really helped relieve my anxiety. It’s a long time to be confined in such an uncomfortable position, so I would recommend anyone having this treatment to consider using some relaxation techniques and to request sedatives if necessary. And don’t try to hold your breath like I did.

You can bring your own music although I don’t necessarily think this is a good idea. Anyone who’s had an MRI scan will appreciate what I’m talking about. Stereotactic radiotherapy isn’t as noisy as an MRI, but having your head clamped in a vice for two hours is a sure fire way to ruin your favourite album. I didn’t bring any of my own music and was subjected to 80s classics. Club Tropicana will never sound the same again.

As traumatic as it was, I’m really glad I had the treatment. Stereotactic radiotherapy is a relatively new treatment and it’s not offered in many places, so I feel really fortunate to have been able to access it. I’ll find out in a couple of months if the treatment has worked and I’ll now be having three monthly MRI scans to monitor my brain.

Access to drugs

This week I also started a new treatment, a targeted drug called everolimus.

Everolimus was a drug earmarked for removal from the Cancer Drugs Fund in January. Both everolimus and another breast cancer drug eribulin have recently been reinstated by the Cancer Drugs Fund, which is great news for women with secondary breast cancer in England. However, access to cancer drugs is still not consistent across the UK.

Another breast cancer drug lapatanib has been rejected for use by both the Cancer Drugs Fund and the Scottish Medical Consortium, making it unavailable to new patients across the UK.

And while some breast cancer drugs are available in England through the Cancer Drugs Fund, only everolimus is approved for use in Scotland. Access in Wales and Northern Ireland is even more complicated.

It’s a shameful state of affairs. We hear news reports that these drugs give patients only an extra six months, as if we’re not worth the effort. But some of these drugs can and do work for years. Many of my friends with secondary breast cancer are a testament to this.

These drugs don’t just keep us alive, they allow us to live and they should be available to all, not just those fortunate enough to live in the right postcode.

With the upcoming election you can email your local MP and encourage them to put breast cancer on the agenda #stopwomendying.

You can read more from Katherine on her own blog killerkath.wordpress.com and also on Twitter @killerkath

Vita bloggers’ views are their own and do not necessarily represent those of Breast Cancer Care or Vita magazine.

 

 

Gelclair & The Secret Garden

This weekend I have mostly been sat in hospital waiting rooms and hunting for a product called Gelclair.

I’ve got a very sore mouth and the elusive Gelclair is one of the only things that soothes it. God knows what’s in it, but it bloody works. Diflam ain’t got nothing on Gelclair.

Gelclair I love you

The only stash I had, donated by a generous friend, ran out last week and it’s been Mission Gelclair ever since.

My Gelclair quest has caused some drama over the last few days. I had a Mary and Joseph moment and nearly sobbed when I was turned away from the umpteenth pharmacy when they said “no Gelclair here!”. My first trip to out-of-hours also nearly ended in tears, when I was handed a prescription for Bonjela.

Anyone who’s been through chemo will understand how painful & debilitating ulcers can be, and how pointless and ineffective Bonjela is. As one doctor later commented, it’s for babies.

After waking on Sunday with an all over body rash and an ever deteriorating mouth, I was sent back to out-of-hours and finally admitted to hospital yesterday evening.

The mucous membrane of my mouth has eroded in places leaving gaping sores and ulcers. The pain is excruciating so I’ve been on heavy duty painkillers. Eating and drinking has become a painful game of “avoid the ulcer”.

My white blood cell counts are low, not low enough to be neutropenic, but low enough to have my own room. There are some bonuses to having a chemo damaged immune system.

I’ve been keeping myself busy with some colouring in. I treated myself to Johanna Basford’s Secret Garden. Here’s my first attempt (note the hospital blanket frame):

It’s very therapeutic, although it doesn’t do much for mouth ulcers.

The Gelclair is finally on order and I’m told it should arrive Tuesday. I just realised that’s actually tomorrow….never have I been so excited about receiving some oral mouthwash!

Until then it’s back to the colouring.

Younger Breast Cancer Network #stopwomendying #demandafairprice

I’m privileged to be part of this video with my friends at the Younger Breast Cancer Network (UK), the online community I belong to. We’d all prefer not to be part of this group, but this wonderful group of women have become my friends. Some are cyber friends, some I know in person and I would be lost without their support.
Please share this post to raise awareness of secondary breast cancer and to support Breakthrough’s campaigns to #demandafairprice for drugs and to #stopwomendying.

You can join the campaign here to #demandafairprice for drugs. And email your MP here to #stopwomendying.

In the news

I haven’t written anything for my blog for ages. There’s a been a few ups and downs with treatment recently which have taken precedence over everything else. I’ve got my blogging head back and will be posting an update soon.

In the meantime, I’m in a piece in the Guardian today relating to Angelina Jolie’s decision to have her ovaries removed:

http://www.theguardian.com/society/2015/mar/24/women-angelina-jolie-choice-surgery-ovarian-cancer

And I’m going to be on the BBC World service this evening at around 6.15pm talking about the same thing…..me and Angelina we have sooooo much in common!! 😉

Here’s the link to the programme in case you missed it:

https://www.dropbox.com/s/lkl0bx9p60y78pm/World_Have_Your_Say_-_Angelina_and_Clarkson_p02m7n65_default%20%282%29.m4a?dl=0

Tumour Profiling & why I’ve decided to have my ovaries removed

An amended version of this post is available on the Breast Cancer Care Vita Blog: http://www.breastcancercare.org.uk/news/blog/why-i-ve-decided-have-my-ovaries-removed

Tumour Profiling

A while back you may remember I wrote about something called Tumour Profiling.

Current treatment for cancer is very much trial and error. A drug which works really well for one patient, might be less effective in another patient with the same type of cancer. When I was being treated for primary cancer (in the breast) I was on a chemotherapy regime called FEC. This didn’t have great results for me, although I know other women who had a great response.

Since being diagnosed with secondary (metastatic) disease I’ve been on a number of different drugs. Some of these have worked and some haven’t.

Chemotherapy isn’t pleasant and it’s even less enjoyable finding out that the drug you’re on isn’t working. Not only is it a waste of time, it’s an incredible waste of resources. This is where Tumour Profiling comes in.

Profiling of tumours isn’t new and, with breast cancer, certain receptors are already routinely tested: Oestrogen (ER), Progesterone (PR) and HER2 protein. My cancer is ER+, PR+, HER2-ve. The hormone positive status of my cancer means that it should respond to hormone therapies, but so far they have all failed. It’s very likely that the cancer has mutated and developed resistance to certain drugs.

Tumours can develop drug resistance very quickly. This is why patients with secondary cancer often end up in a continual cycle of treatment.

Tumour profiling allows doctors to identify further genetic mutations and to personalise treatment. It speeds up the treatment process and rules out ineffective, potentially damaging treatments.

I’ve had a rough time with chemotherapy from the start. My body doesn’t like being poisoned, so for me this report is invaluable. It means I don’t have to put my body through treatments which aren’t going to work.

The results 

When I received the 23 page report back in November I was a little underwhelmed. It’s hard to reconcile the piddly pile of paper I received with the huge sum of money paid for the test. It didn’t help that I don’t understand much of the report. I’m no numpty, but I’m also not a scientist.

As so many of you generously helped me pay for the test I thought you might want a peek. I’ve attached the main bits here so you can have a nosey and let me know what you think: Tumour Profiling

So was it worth it? According to my consultant, YES.

It identifies a number of biomarkers which correlate with specific chemotherapy regimes. The results also highlight one gene mutation TP53. The tumour protein P53 is a tumour suppressor gene (it prevents cancer), so it’s a really common gene mutation for cancer patients to have. However the TP53 gene mutation can also be inherited (like the BRCA1/2 gene fault) so there is a possibility of a familial link. This is a question I’d like answered as we have a lot of cancer in our family, including mum who had primary breast cancer in 2013. I should add we don’t have the BRCA1/2 gene faults.

The report matches me with ten chemotherapy drugs and ten hormone therapies defined as ‘Agents Associated with Potential Benefit’. I’ve already tried some of these drugs, but there’s a fair few still to get through. One of the drugs that I’m compatible with is a bowel cancer drug Irinotecan, so you can see why the report is a really beneficial tool for clinicians.

The report also has a clinical trials connector which matches the patient with suitable trials. Many trials look for patients who have specific gene mutations or biomarkers. Establishing whether your genes are wonky enough to take part in a trial is a long and laborious process. Having all this information to hand will make it much easier for me to access suitable trials.

What now?

I’m currently on an oral drug called Teysuno, normally used to treat stomach cancer. Teysuno is in the same family of drugs as Capecitabine, the one that made me really ill. It is supposed to be less harsh than Capecitabine but the side effects are beginning to catch up on me now. My face is red, sore and blotchy and I have days (like today) when I feel pretty grotty. I just feel icky, tired and sapped of energy.

In an ideal world I’d like to get back onto hormone therapy as this is much less invasive than chemotherapy, however most of the hormone therapies I’m potentially compatible with are for post-menopausal women. To access these drugs I have to get my ovaries either removed or switched off (chemically). We already tried switching my ovaries off with Zoladex (Goserilin) however this didn’t work, so I’ve decided to take the drastic step of having my ovaries removed (an oopherectomy). This might sound extreme and rather final, however oestrogen is the main source of fuel for my disease, so it makes sense to cut off the supply.

What I have to look forward to

As many of you know I’m also planning on relaunching my business Killer Kilts very soon. It’s been incredibly frustrating, as the ups and downs of treatment make having a normal life incredibly difficult, but I’m really determined to get things going. I’m slowly getting there but I might have to delay the relaunch until after surgery.

Obviously I’m hoping I will make loads of money, but the most important thing for me is that it will give me something else to focus on instead of cancer. I’m also hoping to have a big trip later in the year (when I make all this money) and plan to visit friends and family in Australia, New Zealand, Vancouver and New York.

I just want to say thanks again to everyone who helped me pay for the Tumour Profiling report! If anyone is interested in finding out more, or wants to know how to go about arranging the test, just drop me a line: killerkath@outlook.com

 

 

Vita Blog: My Christmas Wishes

http://www.breastcancercare.org.uk/news/blog/my-christmas-wishes

As I write this post, the festive season is upon us. Admittedly I’m not that keen on Christmas. I’ve always felt more ‘Bah! Humbug!’ than ‘Ho, ho, ho’ about Yuletide. All that forced jollity makes me turn all Ebenezer. But, ’tis the season to be jolly, so in an attempt to rekindle the joy and excitement of Christmas past, I’ve decided to write to Santa Claus and see if he can make some of my festive dreams come true.

Dear Santa…

It’s been a few years since I last wrote to you and, although I’m not one to hold a grudge, you never did give me that pony. OK, maybe I was asking for a bit much, but what about the Barbie house and the Cabbage Patch Kid? I know you’re busy, but you’ve got some serious making up to do.

Here is my wish list in no particular order.

1) I’d like my old body back please. I was more than happy with the old one. Perhaps my boobs were a little wonky but they were a damn sight prettier than what’s there now. I realise this is a tall order, but can you please erase the scars and the general wonkiness this disease has inflicted on my body. I’m not asking for much, just a little symmetry.

2) While we’re on the subject of boobs – can I have a new nipple please? The one that was started earlier this year never got finished. I am still ‘blind’ on one side. Yes I’ve got secondary cancer, but I’d still like to look normal. I don’t think this is too much to ask. By the way, I’m curious to know what happens to all the old nipples? Is there a nipple heaven? This is a question that fascinates me and my nipple-less friends.

3) Oh, and I’d like some tattoos. You know the kind of thing – something pretty, floral and feminine that might also disguise some of the scars. I reckon if you find a clever tattoo artist they might even be able to make me look symmetrical.

4) I’d also like some padding (like a ‘foob’ or prosthesis but bigger) for my right buttock. Perhaps I should elaborate. My right buttock came to the rescue in my hour of need (tissue from my bottom was used to create my reconstructed breast) and is now quite literally staring me in the face. I’m very grateful to my derriere for helping me out, but it’s left me slightly lopsided. This can make life quite uncomfortable. Have you tried riding your sleigh with one butt-cheek?

5) Can I have some more hair please – but only on my head? Anything below the nose is surplus to requirement. You know what I’m talking about, Santa. Those pesky chin hairs and the pubic triangle, which for some reason always grows back quicker than anything else. Isn’t there a button you can press to make the head-hair grow faster? It’s winter, my head is cold and I’m fed up with people thinking my crew cut is a ‘lifestyle’ choice. And no, a wig won’t suffice. I want real hair, the kind that clogs up the bath. I want to swish again!

6) This is a big ask, but can you please transport me back to my old life for just one weekend? I’d like to remember what it’s like to wake in the morning without the cloud of cancer slapping me in the face. I promise I won’t take anything for granted ever again. Please.

7) Can you ask one of your elves to create a dating website for people with life-limiting illnesses? Secondary cancer isn’t exactly what you’d call a big selling point. We single folks need some help with marketing ourselves. Friends tell me that the dating world is full of commitment-phobic men, so perhaps we’re at an advantage? Here’s my profile header to get you started: ‘Breast cancer patient seeks understanding man with dark sense of humour for short-term commitment. Must like scars.’

8) I want to grow old and wrinkly. No, really I do. Before my cancer diagnosis I used to slather my face in Boots ‘Protect and Perfect’ anti-ageing serum. Nowadays my benefits payments don’t stretch to wrinkle cream, and even if they did I wouldn’t waste the money. Wrinkles are now very low down my list of priorities. Everyone else is obsessed with staying young, but I want to grow old. I’ll never be a grandparent, or even a parent, but I’ll gladly settle for being a dotty old aunt.

9) Can you please give me and all the other women living with this horrific disease a little more time? I’m sure most of us would settle for chronic disease status, until they find the elusive cure. I’d happily trade all of the above if you can give us all a little more time. Actually, make that a lot more time.

10) They keep saying we’re going to ‘beat cancer sooner’. This is a bit too vague for me and everyone else living with cancer. Sooner can’t come soon enough. I’d be really grateful if you can ask ‘them’ to be more specific and perhaps bring sooner forward. I’ve got a life to plan, and I’d like to put some dates in the diary.

I realise I’ve already given you a big list and I know it can be difficult shopping for other people. If you’re still looking for inspiration though, I’d also like a new dressing gown, some Liz Earle No. 15 perfume, a Vitamix, some Diptyque candles and some new slippers.

It’s not long till Christmas, Santa. You’d better get to it!

Katherine

PS Merry Christmas

You can read more from Katherine on her own blog killerkath.wordpress.com and also on Twitter @killerkath

Vita bloggers’ views are their own and do not necessarily represent those of Breast Cancer Care or Vita magazine.

 

Vita Blog: I’m living with cancer, not fighting a war

Here’s my latest Vita Blog Post: http://www.breastcancercare.org.uk/news/blog/i-m-living-cancer-not-fighting-war

As a cancer patient and blogger, words are something I obsess about. A couple of weeks ago, in the midst of last-minute holiday preparations, I got a call asking if I’d be interested in going on BBC Breakfast to give a patient’s perspective on the language used around cancer. Never mind that I hate public speaking and had less than 24 hours to prepare, this is a subject that really interests me, so I accepted the challenge.

The discussion got off to a bad start when I was mistakenly introduced as someone with ‘terminal’ cancer. This was a simple misunderstanding. However, it highlights the importance of using appropriate language with cancer patients. The word terminal only applies when patients have run out of treatment options and are reaching the end of life. I have secondary, not terminal, disease.

The discussion I took part in refers to recently published research which highlights that the use of military metaphors (like bravery, fighting and battling) can be damaging to patients with terminal cancer. Although research in this area is long overdue, the findings won’t come as a surprise to those living with the disease.

Mind your language

I first became aware of the peculiar language around cancer after my primary breast cancer diagnosis in 2012. My curiosity was tweaked by the well-intentioned messages of support I received from friends and family.

Suddenly everyone had an opinion on how I should tackle the disease. I should eat less cheese; eat more broccoli; juice 13 times a day; eliminate stress; restore my pH balance; and deal with those unresolved emotional issues, undoubtedly (I was told) the root of my disease. But more than anything I should fight, I should battle and wage war on those renegade cells intent on killing me.

The message was clear: I had a battle ahead, but if I adopted the right attitude, my bravery and courage (and let’s not forget positive thinking, the most powerful weapon of all) would be rewarded with the ultimate victory, survival.

To begin with I played by the rules. When my target was a tangible one, I found the language of battle empowering. As I quaffed my daily juice I imagined the cancer cells running for cover: ‘Quick run, she’s drafted in the broccoli!’ I pounded the pavements and began a daily yoga practice. Every stride and stretch brought me another step closer to victory.

I developed an inner warrior, as suggested by one of the numerous ‘beat cancer’ books I read. Mine was Ellen Ripley, the shaven-headed heroine from the Alien films. I envisaged her blasting the cancer cells into submission. I thought I’d found the perfect ally until my brother pointed out that the aliens in the film have a tendency to erupt from victim’s chests. This parallel was a little too close for comfort.

I ditched the inner warrior and as someone now facing a lifelong ‘battle’, the language of war no longer sits comfortably with me.

Bravery

When you’re a cancer patient, you get used to people commending you on your bravery and courage. But I’ve always felt awkward about wearing these badges of honour.

Bravery implies strength and fearlessness, but labelling people in this way puts added pressure on them to be good and uncomplaining patients. In the ‘battlefield’ of cancer, fear, anger and depression (normal reactions to a cancer diagnosis) are viewed as weak and negative traits, perhaps even cowardly. You’ve got to ‘be strong’ and you ‘have to fight this’.

Fighting

I consider myself both strong and resilient, but when you’re living from scan to scan you realise that mental strength has no effect on the result. It can be quite demoralising continually being told you can fight this, when actually the weapons are in the hands of the doctors treating you and the researchers working on the next generation of cancer drugs.

This might sound like I’ve resigned myself to fate, but I take a very active role in my treatment. I look after myself physically and mentally and I’m always aiming towards a cancer-free future. However, cancer is an unpredictable and pernicious disease. It takes more than attitude to fight it.

Losing the battle

Like many before me, I believed that my fighting spirit and positive attitude played a part in me beating the disease. But my cancer returned, not once but twice. I now face a battle which will never end. Is it my fault that the cancer came back? If I lose the battle is it because I didn’t try hard enough?

The implication of guilt and failure is a common sentiment among those living with secondary and terminal disease. As if it’s not bad enough living with a life-limiting illness, we live under the shadow that we may have failed in some way.

Perhaps if I hadn’t eaten that cheese sandwich; if I’d juiced 13 times a day; if I felt more ‘blessed’ (cancer is a lesson, don’t you know?) and less stressed about having this horrific disease then it might not have come back. Perhaps I should have tried harder. I’ll never know, but these are sticks I and other cancer patients beat themselves with.

A fighting spirit gives rise to hope and optimism and there’s definitely a place for these for patients at any stage of treatment. However, military metaphors offer little protection for those on the front line and we need to think of better ways of talking about cancer. It’s a disease, not a war.

My attitude today is more one of hope and optimism than GI Jane. Some days I struggle. Some days I cope. I accept the treatments offered and manage the side effects to minimise the impact on my life. I live to the best of my ability with a disease for which there is no cure.

I am living with – not dying of – secondary cancer.

You can read more from Katherine on her own blog killerkath.wordpress.com and also on Twitter @killerkath

Vita bloggers’ views are their own and do not necessarily represent those of Breast Cancer Care or Vita magazine.

BBC Breakfast – updated with clip

I’ve had such an amazing day. Thank-you for all your lovely comments and messages. I’m still buzzing!!

I didn’t sleep a wink last night and woke with a feeling of absolute terror, but by the time I got to BBC studio I had calmed down a bit. In my head I was telling myself ‘what’s the worst that can happen?’…I might make a twat of myself. Big deal, it won’t kill me.

The presenters make it all look so easy & made me feel really comfortable. Geoff Beattie (you might have recognised as the psychologist from Big Brother) was lovely and I’m so glad he was there to do the science bit.

I was incorrectly introduced as having terminal cancer, but this was a misunderstanding around the terminology and just goes to show how important language is when we´re talking about cancer. They also mispronounced my name but everyone does, so I let this one go.

As I said in the interview, the disease is only classed as terminal when you run out of treatment options.  I have secondary, not terminal cancer.

I’ve never done anything like this before and I thought I did okay, but I got such a shock when I watched the footage back at home.

When the call came through yesterday I nearly said no. I’m so glad I didn’t. It’s given me a thirst to talk more about this shitty disease and the predicament those us with secondary cancer face.

Anyway thanks again for tuning in. Here´s the clip for those that missed it.

Killerkath on BBC Breakfast News

My Facebook friends already know about this so apologies if it’s old news.

I’ve been asked to come along and join a discussion on the BBC Breakfast couch tomorrow morning regarding the war/battle metaphors used when talking about cancer. I’ll be joining a psychologist Geoff Beattie and I’ll be giving the cancer patient/blogger’s perspective.

I’ve been told we’ll either be on the 7.40 or 8.10 slot.

I’m the girl who did everything possible to avoid my story being published in my hometown newspaper the Perthshire-Advertiser……….ahhhhhhhh what have I let myself in for!!!

 

 

 

Vita Blog: Clearing up myths and misunderstandings about secondary breast cancer

Here’s my latest Vita Blog post for Breast Cancer Care:

http://www.breastcancercare.org.uk/news/blog/clearing-myths-misunderstandings-about-secondary-breast-cancer

By the time this post is published, we’ll be halfway through the fuchsia-tinted month of ‘Pinktober’, or Breast Cancer Awareness Month.

Pinktober generates mixed feelings among the breast cancer community. While it has been a spectacular success in celebrating survival and generating funding for much needed services and research, there is still very little awareness around the more deadly form of the disease: secondary breast cancer.

There’s a lot of ignorance about secondary breast cancer, so I want to use this post to unravel a few of the myths surrounding the disease.

My secondary breast cancer selfie for the Younger Breast Cancer Network (UK)

There is no cure for secondary breast cancer

For many, breast cancer is now viewed as ‘cancer-lite’. It’s no longer perceived as life-threatening, even though 12,000 women die from the disease every year in the UK.

Statistics released by Breast Cancer Campaign illustrate how misinformed people are about the disease. Figures show that less than 25% of Britons realise that when breast cancer spreads, there is currently no cure. Over 75% believe that it can still be cured when it spreads to another part of the body.

For clarification here’s Breast Cancer Care’s definition:

‘Secondary (metastatic) breast cancer happens when breast cancer cells spread from the (primary) tumour in the breast to another part of the body. This may happen through the lymphatic or blood system to other parts of the body. This is also referred to as metastases, advanced breast cancer, secondary tumours, secondaries or stage 4 breast cancer.’

Once the cancer has moved from the original (primary) site, it cannot be cured.

Fear

Much of the stigma around cancer is fuelled by ignorance and fear. It’s a scary disease. People don’t like talking about it because it means facing subjects most of us would rather avoid.

Whether you have primary or secondary cancer, dealing with other people’s discomfort about the disease is something you get used to. When you’re diagnosed with secondaries, people’s reactions become even more extreme.

I’ve got used to people gasping in horror. However, being on the receiving end of this type of reaction isn’t easy. If you’re anything like me, you concoct a more palatable version of the truth, the version where they find a cure and you live happily ever after.

There’s even a code of silence between primary and secondary breast cancer patients. They’re frightened of becoming one of us and we don’t want to scare them.

During a recent trip to the chemotherapy ward, a newly diagnosed patient asked when I would be finished treatment. It was her very first chemotherapy session. She was terrified and needed some reassurance. I didn’t have the heart to tell her that this was the second time I’d lost my hair, and for me treatment would never end.

The discomfort people have with talking about secondary disease can make you feel like the Grim Reaper. We are an unwelcome reminder to the rest of humanity that our time here is finite. Death is an unfortunate reality we all have to face. Yes reader, cancer or no cancer, one day you will die.

Self-blame 

Before my secondary diagnosis, I knew very little about the disease. My scant awareness was limited to the knowledge of a secondaries support group in my local Maggie’s Centre. My worst fear was joining that group and I avoided any association with it. For me, even being in the same room as people with secondaries was a risky business: stand too close and you might catch it.

My ignorance about secondary breast cancer was reinforced by those around me. After losing a friend to secondary breast cancer, I was shocked when a mutual acquaintance commented that ‘She always had a bad attitude towards the disease,’ as if she’d somehow brought it upon herself. I was reassured that with my positive attitude I would never become ‘one of them’.

The belief that the right attitude can have a positive effect on your prognosis is one of the most common misconceptions about the disease. But it’s a myth we’ve all bought into. In order to be a survivor, you have to conform to the ‘smiling, battling warrior’ ideal. Those who don’t will lose the battle.

Cancer is stigmatising enough, but for those with secondary disease the stigma is even greater. For as well as failing at survival, there’s an assumption that perhaps we didn’t try hard enough to beat it. It’s much easier for people to assume that we didn’t play the game than to accept the possibility it might happen to them one day.

There’s no doubt that having a positive attitude can enable people to get through treatment. However, research doesn’t support the idea that positive thinking can have an effect on prognosis, but suggests that pressure to engage in positive thinking may add to the psychological burden of cancer patients.

Until we destroy this mythical relationship between positive thinking and cancer survival, those of us with secondary disease are saddled with the added guilt that perhaps we didn’t try hard enough.

The future

It’s not all doom and gloom. Breast cancer charities are beginning to listen and give women with secondary breast cancer a voice.

Currently only one day of Pinktober is devoted to Secondary Breast Cancer Awareness Day. However, Breast Cancer Care has devoted a whole week towards highlighting some of the #hiddeneffects of the disease. Breast Cancer Campaign is raising awareness of secondary breast cancer with their spreadtheword campaign andBreakthrough Breast Cancer is campaigning to demand a fairer price for life-extending drugs.

As well as this, Breast Cancer Care and Breakthrough have worked with hospitals all over the UK to create a Secondary Breast Cancer Service Pledge, with a focus on improving standards of care and allowing secondary cancer patients to have their say.

Breast Cancer Care  is also addressing the issues faced by younger women, when it hosts the first ever Living with Secondary Breast Cancer as a Younger Woman event in London later this month. Breast cancer is much less common in younger women (one breast cancer in five is diagnosed in women under 50) and this is a rare opportunity for those of us with secondaries to meet up.

Writing this post has made me realise that we have a long way to go when it comes to spreading the word about secondary breast cancer. My own lack of awareness was due to fear and ignorance, and it’s unfortunate that it took a secondary diagnosis to make me more aware of secondary breast cancer. Until we become more comfortable with talking about it, secondary breast cancer will remain the pink elephant in the room.

You can read more from Katherine on her own blog killerkath.wordpress.com and also on Twitter @killerkath

Vita bloggers’ views are their own and do not necessarily represent those of Breast Cancer Care or Vita magazine.

 

Operation lymph node

This is a very brief update to let you know that I had surgery yesterday. It went okay. I had a singing surgeon. The hospital toast wasn’t so good but I lived to tell the tale. I feel a bit groggy but I’m not in much pain. It feels good to have the bad stuff removed. Less cancer, more Kath. If things keep going my way soon I’ll be NED (No Evidence of Disease).

I’m sorry if I can’t reply to all your messages individually but I really appreciate all your well wishes. I’m being well looked after by mum x

Samye Ling

Last weekend I had a much needed break at the Samye Ling with my mum.

For those who aren’t familiar with the Samye Ling it’s a Tibetan Buddhist monastery (the first outside Tibet) in the Scottish Borders. It’s an amazing place and it’s been there since the 1960’s. They do courses in things like Yoga, Meditation, Gardening & Buddhism. I’ve been there a few times before, but it was Mum’s first visit. We spent a blissful couple of days doing yoga, meditation, eating yummy vegetarian food and switching off from the outside world.

Green Tara

One of the best things about the Samye Ling is that there is no mobile signal and last weekend the wi-fi was broken. It was absolute heaven being uncontactable. I briefly considered chucking my phone in the river but thought better of it.

Since my last post there have been a few developments in my treatment plan. I had a rough time on Capecitabine and although the second cycle wasn’t as bad as the first, my skin was in a right old mess. Apart from losing a whole layer of skin from my feet, I’ve had eczema all over my body including what can only be described as a red, flaky beard. I’m so on trend.

I’m what is known in the trade as a difficult customer and because of the extreme reaction I had to Capecitabine, I’ve been on a break from chemotherapy whilst they decide what to do with me next.  I’m prone to neutropenia and although the Cap didn’t affect my white blood cells, I was incredibly ill during the first cycle. Mum says I have the ginger gene. I’m a delicate flower.

Although it’s been nice to have a break from chemo I feel like I’ve been in limbo for weeks. It’s been incredibly stressful not knowing what’s going on and I can’t face speaking to anyone when I feel like this. I feel like I’m in a constant loop of updating people and it really wears me down so please forgive me if I don’t always respond to your messages. I know people panic when they don’t hear from me and assume that I’m on my death-bed but the likelihood is that I’m just having a bad day.

After enduring the journey from hell (think Michael Douglas in Falling Down) on my way to my surgical appointment last week, a decision was finally made regarding the next stage of treatment. I’m having surgery next week to remove the recurrence in my lymph nodes along with the tiny lump in my reconstructed breast. I had a full axillary lymph node clearance around this time last year but they missed a bit, hence the recurrence.

Getting support Samye Ling style

I also had a CT scan last week to find out what’s going with the rest of my body so I’ve had a week of scanxiety. Yesterday I had a phone-call from the registrar to let me know the results of my scan.

You’d think scan results are quite important however the main reason for her call was to discuss my PIP (Personal Independence Payment) application. For those of you who don’t know PIP has replaced DLA (Disability Living Allowance). Pre-Tory government people with secondary cancer automatically got DLA. We now have to apply for PIP and go through a degrading personal assessment. If you are terminally ill and have less than 6 months to live you can be fast-tracked by getting your doctor to complete a DS1500. I was secretly pleased when my consultant refused to sign this.

The Macmillan lady who helped me complete my form, told me to expect a 6-9 month wait to be assessed, so I was gob-smacked to receive confirmation of my first payment a month after applying. Apparently my breast care nurse pulled some strings and fast-tracked me.

I wouldn’t have bothered applying for PIP had it not been for the advice I received from the women in my secondary support group. I didn’t think I was ill enough, but I could barely walk a few weeks ago. so I no longer feel guilty about being on benefits.

Anyway back to the scan results. The scan results show that the very small nodules on my lungs have SHRUNK. The tumours in my lymph nodes and on my reconstructed breast have remained STABLE. You have got no idea how much I love these two words right now.

At clinic today we also discussed ‘THE (mutational analysis) TEST’. It’s finally happening. My consultant agrees that now is a good a time as ever. They’ll have fresh tissue to sample and I’ll have a few weeks break before re-starting chemo. The Capecitabine is working, so once I’ve recovered from surgery it’s likely that I’ll go back onto a lower dose.

My operation is on Monday. It’s not a big operation but it took me a long time to recover from the last one. With my newfound PIP wealth, I’m hoping I might be able to squeeze in a sunshine break before I restart chemo. In the meantime I’m trying to retain some of the calm I felt at the Samye Ling. And breathe……

Vita Blog: Getting support: counselling, support groups and mindfulness

Here’s my latest Vita Blog Post: http://www.breastcancercare.org.uk/news/blog/getting-support-counselling-support-groups-mindfulness

I love picking fruit and today I spent a couple of hours picking blackberries. It requires patience and perseverance but it’s incredibly rewarding seeing the fruits of your labour bubbling away on the stove.

One of the reasons I love picking fruit is because it’s one of the only times I switch off. This is something I strive for when I meditate but never quite achieve. When I’m picking blackberries, all I’m focused on is reaching for the next berry. It’s very therapeutic and for a few blissful hours I forget I’ve got this vile disease. 

Switching off is difficult at the best of times, but when you’re going through treatment, worries can be all consuming. Not only are you dealing with the rollercoaster of treatment, but there are often financial, emotional and practical issues to contend with. Anxieties about paying the bills, body image and fears of recurrence are just a few of the things a cancer patient has to face, along with the physical and psychological impact of treatment.

The constant stress of treatment can take its toll, and it’s no surprise that depression and anxiety are common among cancer patients. Mental health has been in the news recently with research showing that between 6 and 13% of cancer patients have clinical depression, compared with 2% of the general population.

Like many cancer patients, I struggled to get any psychological support when I was first diagnosed. A cancer diagnosis wasn’t considered serious enough to warrant an urgent referral and I was told I’d have a 6–12 month wait for counselling. It was only through accessing the support of my local Maggie’s centre that I got the psychological help I needed.

It seems like we have a lot of catching up to do when it comes to looking after the mental health of cancer patients. However, there are many resources you can access to help you cope with the ups and downs of treatment.

Counselling

Asking for help is nothing to be ashamed about. It can be really hard for loved ones to give you the emotional support you need while you’re going through treatment. It’s also really difficult to be completely honest with them. Counselling provides a neutral space for you to talk openly about how you are feeling. It allows you to put aside the brave face that you put on for family and friends.

I’ve had contrasting experiences while being treated under different authorities and every health authority varies in the availability of psychological support for cancer patients. Some hospitals have dedicated psycho-oncology units and your breast care nurse, consultant or GP can refer you. Charities such as Maggie’s and The Haven also offer counselling.

Alternatively you can chat to someone on the Breast Cancer Care or Macmillan helplines. Breast Cancer Care also has a brilliant telephone support service called Someone like me, which matches you with someone who’s been on a similar journey.

Find a support group

There’s no better support than from those in the same boat as you. No one else can comprehend what you’re going through unless they’ve been there themselves. There are breast cancer support groups all over the country. You should be able to find one through your breast care nurse, your local hospital or through Maggie’s, Macmillan or The Haven.

Breast Cancer Care offers practical courses for people at different stages of treatment as well as monthly support groups for those living with secondary breast cancer. For women under 45, their Younger Women Together meet-ups are a great way to make friends and create new support networks.

There are also online support groups such as the Younger Breast Cancer Network (UK) on Facebook and the online Forum at Breast Cancer Care, where you can get support from other women going through treatment.

Meditation and mindfulness

I started meditation classes a few months before my primary breast cancer diagnosis in 2012 and this really helped me cope with the trauma of a cancer diagnosis. You don’t have to be a Buddhist to meditate and many places now offer courses in mindful meditation or mindfulness based stress reduction (MBSR).

We spend most of our time in autopilot mode, thinking about the past or the future and paying little attention to what is going on in the present. The busyness of modern life and the technologies we surround ourselves with encourage us to be even less mindful. Mindfulness encourages you to be in the here and now using techniques such as meditation, yoga and focusing on breathing. It enables you to be more engaged with your feelings and emotions so that you are better able to manage them.

And it really works. Meditation can reduce anxiety and stress, as well as helping to control problems like pain and high blood pressure.

You don’t have to sit and meditate to be mindful. Mindfulness can be incorporated into your everyday life. Everyday activities such as baking a cake, going for a walk or even reading a book can all be mindful.

There are many avenues to explore if you’re interested in learning some mindful meditation techniques. The Be Mindful website has a list of courses all over the UK as well as online courses. Your local hospital or cancer support centre might run courses. If you just want to dip your toe in the water there are some great podcasts on the Mental Health Foundation website and at the University of Oxford Mindfulness Centre.

Picking blackberries and meditation aren’t for everyone and you might find other things work better for you. When I’m feeling well I like to keep myself active. Walking and yoga are the things that help me feel stronger both physically and mentally. On bad days I find getting lost in a book or watching a film are really great distraction techniques. I hope you find something that works for you.

You can read more from Katherine on her own blog killerkath.wordpress.com and also on Twitter @killerkath

CAP or CRAP

In breast cancer world you have to get used to a whole new language. People talk in medical jargon and abbreviations. I’m still catching up. The drug I’m on now is called ‘CAPECITABINE’ or XELODA. Breast cancer ladies call it ‘CAP’. Because of the effect it has had on me for the last two weeks I’m going to refer to it in this post as ‘CRAP’. There is a happy ending to this post so please keep on reading.

Yes I’ve used this one before but it’s so apt. Thanks Mr Shrigley!

I’ve just completed my first cycle of CRAP. I’m on a 3 week cycle of this drug which means I take the pills every day for 14 days, followed by a recovery week.

When my consultant started me on this drug 3 weeks ago he said I should tolerate it quite well. They always understate the side-effects when they start you on a new drug. I understand why they do this because the placebo effect can happen. If they tell you that you’re going to feel really sick then the chances are you will, however nothing could prepare me for the severity of side-effects that this drug provoked.

The nausea, diarrhoea and fatigue that started earlier last week got progressively worse. This was combined with excruciating stomach cramps and blistered feet. I spent most of last weekend hunched over the toilet. It wasn’t pleasant. I couldn’t eat without my stomach going into spasm and I lost around 4kg in weight.

I felt so unwell on Friday that I ended up calling the hospital hotline, but was was redirected to my GP. If you’re not exhibiting signs of a neutropenic infection (i.e. a temperature), you’re not considered ill enough to be admitted to hospital. Apart from the tummy troubles, I was tachycardic (my heart was racing) and my blood pressure was very low. My GP, who could see how poorly I was, called the hospital herself to confirm she could send me home. Capecitabine can affect the way your heart works, so I was frightened that something was seriously wrong.

I was reluctantly sent home and mum came down from Scotland to look after me. You’re never to old to need your mum, even at my age. Mum tried to encourage me to eat but the only thing I could stomach was lemonade. I didn’t eat a proper meal until Wednesday.

It’s now Thursday and this is the first day I’ve felt normal in over a week. I’ve got my appetite back. I managed a walk and I was quite excited about the fact that I didn’t have a bowel movement for over 24 hours. It’s the little things that matter.

Today I saw my consultant. He’s lowered the dose to make the side-effects more tolerable and given me an extra week off to recover.

The good news is that it was all worth it. Not only have my tumour markers come down but the lump under my arm has shrunk!!! My consultant said that with this drug, the side-effects are an indicator that the drug is working, so all that time on the toilet was worth it.

I’ve had a really shitty two weeks but I’m happy that things are finally going my way. I’m one step closer to remission.

Udderly Smooth and Proper Naked Selfie’s

This is a short post just to say a massive THANKYOU to everyone who contributed to my fundraiser. With off-line contributions from family and friends I now have enough money for ‘THE TEST’. There is a little piece of Kath stored in a lab somewhere, which will be sent to the lab in the next week or so.

I’ve recently started a new chemotherapy regime (Capecitabine) and this is making me feel pretty vile. My new best friend is the toilet, I have a mouth full of ulcers, blisters all over my feet and I was admitted to A & E on Monday with suspected neutropenic sepsis  (thankfully I didn’t).  Today is the final day of my first drug cycle (day 14) before a much needed week’s break.

One of the reasons my consultant put  me on this drug was because it’s not so hard on your white blood cells so there is less risk of neutropenia. I’ve escaped neutropenia, however the other side effects have been horrific. I’m on a really high dose so they should lower it for the next cycle.

One of the advantages of this drug is that I take it orally, so there are no horrible injections. This is easier in some ways but psychologically it’s really difficult taking a drug which you know is going to make you feel so ill, especially when there’s no guarantee that it will work. This is why the Tumour Profiling is so important. It will establish whether the Capecitabine is doing it’s job. If it’s not working, it will tell us what drugs are compatible.

Udderly Smooth – great for cows and cancer patients

I don’t like feeling ill (does anyone?) and I really struggle when I’m not able to physically function. Walking is my meditation so it’s been especially hard this week not being able to go out for my daily stomp. According to my OT mate Sally, I’ve got Occupational Deprivation – I can’t do the things I normally do. I love how they have a label for everything, it makes my misery seem somehow more justifiable.

The schmaltzy ‘Think of 3 positive things for 7 days’, doing the rounds on Facebook, has been a real test for me this week. But even I have found things to be positive about. Discovering Udderly Smooth cream (for those on Capecitabine this is a lifesaver) was a big highlight of my week however the fundraiser really kept me buoyed up. It’s been quite life-affirming and nice to know that so many people care.

What started as a little campaign to pay for ‘The Test’, has now taken on a life of it’s own and I’m handing over the reigns to the ‘PROPer Naked Selfie’ team. My lovely Aussie sister-in-law came up with the idea of ‘PROPer Naked Selfies’. I’ve nearly reached my target and I’m looking a bit peaky for selfies, so I’ve asked that any donations from this new campaign go directly to Maggie’s.

For those of you not familiar with Maggie’s. This is a charity started in Scotland by Maggie Jencks. The first Maggie’s Caring Centre was opened in Edinburgh in 1996 and they now have branches all over Scotland as well as a few south of the border. Maggie’s Manchester is opening in 2016!

My brother getting his kitchen utensils out for Maggie’s

The Maggie’s centres offer free practical, emotional and social support to anyone affected by cancer. I attended the Dundee centre where not only did I make lots of new friends, I did classes in Tai Chi & Yoga; joined a writing group; did practical courses on coping with cancer; and had countless free massages. More than anything they provide a warm safe space for people with cancer to relax, away from the harsh sterile environment of hospitals. A friend of mine described the Dundee centre as “a cuddle”.

I know the extroverts among you can’t wait to do a ‘PROPer Naked Selfie’ for Maggie’s. Just get your kit off, find a prop and take a selfie: Text ‘NKED50 £2’ to 70070 to donate £2 to Maggie’s OR donate here at JustGiving.

Tips of the week (for those on Capecitabine) to relieve symptoms of Hand and Foot syndrome: 

Udderly Smooth extra care cream – they do an Oncology range for Hand & Foot syndrome. £9 for a huge tub on Amazon

Vitamin B6 – 100mg a day is said to reduce severity of Hand & Foot

Omega 3 – I’ve been taking about 5000mg a day which I think has helped reduce the inflammation

Silk gloves – these let your skin breathe and are said to calm irritated skin

Not sure which one has been most effective but all a combination of all above definitely helped reduce the severity of my symptoms.

Vita Blog: Chemotherapy and Neutropenia

My latest Vita post for Breast Cancer Care http://www.breastcancercare.org.uk/news/blog/chemotherapy-neutropenia

The only certainty when you’re living with a secondary cancer diagnosis is uncertainty. At every appointment I’ve had recently they’ve thrown me another curveball. The clinical trial I talked about in my last post is now yesterday’s news.

I was all psyched up to start treatment when the hospital called to tell me that I’m no longer eligible to take part. They had expected the metastases on my lungs to grow (they have to be over 1cm) and they haven’t. The tumours have remained stable between my first scan in May and my second scan in June. I was disappointed at being dropped from the trial, but ecstatic when they explained why.

After six weeks of delays, shifting goalposts and false starts, I finally started chemotherapy two weeks ago. I’m now on a weekly regime of paclitaxel and gemcitabine. The drug cycle I’m on is two weeks on, followed by one week off.

Lines and Ports

My first treatment was straightforward, if a little slow. The worst part was having a cannula inserted.

I don’t have a phobia of needles. However, I don’t particularly enjoy being stabbed in the arm. It really hurts and it’s something you never get used to.

If you’re having regular treatment or if you have poor veins, you might be offered a PICC line, central line or port. There are advantages and disadvantages to all of these.

I had a PICC line during my first round of chemotherapy and I found it really difficult to live with. The main disadvantages are: risk of infection, weekly trips to hospital to get it flushed, and restriction of sports and other daily activities.

I managed to do a yoga routine at home, although I had to adapt some postures to avoid pulling out the PICC line. My Warrior 2 looked more like ‘I’m a little teapot’. Having a long hot soak in the bath is also tricky, but I managed to adapt this by elevating my arm. Your arm can go numb, so it’s not very relaxing, but I refused to let it beat me.

On the other hand, having a line or port means that you don’t have to endure being constantly jabbed in the arm while they locate undamaged veins. This makes having blood taken or receiving drugs intravenously a much less painful experience. It also reduces the risk of ‘extravasation’ (when a specific type of drug leaks out of your veins) and damage to your veins.

Neutropenia

I felt OK for the first few days after chemo – the steroid high – but deteriorated towards the end of the week. By day five I had throat and urine infections and ended up at A&E. 

I went for my second treatment on day eight, only to find out that I’m neutropenic. This means that my second treatment has been delayed.

The chemo-veterans among you will no doubt be familiar with neutropenia. Chemotherapy lowers your body’s immunity, and neutropenia happens when your white blood cell (neutrophil) count is low or at zero. White blood cells are the body’s primary defence against bacteria and if you don’t have any, then you’re at much greater risk of infection.

I was hospitalised with a neutropenic infection during my first round of FEC chemotherapy two years ago. It was all very dramatic and I felt like ET the first time it happened. Fans of the film might remember the scene where ET and Elliot are quarantined. Thankfully the medical team don’t wear quarantine suits. However, you are isolated from other patients and they write ‘NEUTROPENIC’ in big letters outside your door. It’s quite frightening.

As a repeat offender, I wasn’t so scared the second time round. However, I’ve been taking it easy over the last week. I’ve had very little energy and I’m trying to avoid mixing with too many people. I’m still on antibiotics, so hopefully they will address any unwanted visitors.

If you are having chemotherapy and are worried that you might have a neutropenic infection, don’t be afraid to call your chemotherapy department. It can be really difficult to distinguish between the side effects of chemotherapy and a real infection. However, there are certain signs to look out for: feeling feverish or shivery; hot and cold sweats; sore throat; diarrhoea; breathlessness; redness around a wound; a temperature above 37.5C or below 36C. Don’t delay in calling your medical team if you feel unwell.

G-CSF

When I saw my consultant last week I assumed I would be offered G-CSF (granulocyte-colony stimulating factor).

G-CSF is a drug given to people whose white blood cell count is persistently low. It works by stimulating your bone marrow to produce white blood cells and reduces the length of time that they are low. It also helps to reduce some of the horrible side effects of chemotherapy. Receiving G-CSF injections during my treatment for primary cancer made chemotherapy much more bearable.

I thought that G-CSF was the standard treatment after a neutropenic episode, but my consultant wants to try a different approach this time. Instead of stimulating my immune system with G-CSF, he wants to try reducing my chemotherapy drugs, to see if my body can tolerate a smaller dose. He explained that using G-CSF is like putting your foot on the accelerator with the handbrake on. My immune system has already been battered by previous treatment, so it’s more beneficial to give me a dose of chemotherapy that my body can tolerate than to whack it into submission artificially. If I become neutropenic again, G-CSF might be an option.

G-CSF is an expensive drug and I wondered whether my consultant’s reluctance to prescribe it was influenced by financial constraints. However, his explanation does make sense. I’ve never been a passive patient and always question clinical decisions, but sometimes doctor does know best.

As I finish this post, my hair is beginning to moult. Being the ostrich that I am, I’m clinging to the hope that it might just thin. I know that hair loss is insignificant when weighed against your health, but it’s taken me 18 months to get my hair to a length that I’m happy with. It seems so unfair to lose it all over again.

Preparation baldness has commenced. My to-do list reads something like this: shave head when hair loss gets too messy; get my wig ‘Stevie’ restyled; go to Headstart or Headstrong and practice scarf wearing techniques; take photographic evidence of eyebrows for future reference.

There’s never a dull moment in cancer world.

You can read more from Katherine on her own blog killerkath.wordpress.com and also on Twitter @killerkath

Vita bloggers’ views are their own and do not necessarily represent those of Breast Cancer Care or Vita magazine.

Wot no Chemo?

This is the world’s smallest update just to let everyone know that I finally started chemo last Monday – yay!

The bad news is that I’m now neutropenic – boooo!!

I felt okay for the first few days after chemo – the steroid high – but deteriorated towards the end of the week. By Friday I had a sore throat and was sent to A & E for some IV antibiotics.

I perked up over the weekend and managed to get away for my friends 40th. They did the Yorkshire 3 peaks challenge for Breast Cancer Care – well done team Natalie!! I challenged myself to do as little as possible and spent a gentle afternoon pottering around Settle.

I was due to have my second treatment this morning, however my bloods showed that I’m neutropenic which means I was unable to have my treatment today. This might sound familiar to those of you who have followed my blog from the start, as I was hospitalised with neutropenia during my first round of chemotherapy two years ago.

Neutropenia happens when your neutrophil (white blood cell) count goes too low, meaning you have no immunity against infection.  Left untreated, neutropenia can be fatal, so the hospital take it quite seriously. As well as the antibiotics, I’m keeping a close eye on my temperature.

I had no energy today so I spent the afternoon in bed watching a mixture of Breaking Bad and Alan Partridge. This might sound like a strange combination but I find Breaking Bad incredibly stressful so I have to intersperse it with comedy. I’m willing it to end.

I’m seeing my consultant and getting my bloods checked on Friday. If my bloods have picked up by then, I should be okay to have treatment next Monday.

I’m hoping they will offer me G-CSF injections again. G-CSF stimulates your bone marrow to produce neutrophils and alleviates many of the horrible side effects of chemotherapy. It makes chemotherapy a much more pleasant experience, however it’s very expensive so they generally only offer it to patients who really need it. Here’s hoping I fall into that category otherwise I might have to do a Walter White.

Fact of the week via an ancient copy of Country Life magazine: Elderflowers relieve cold symptoms. I collected and made a tea from wild elderflowers and the effects were almost instant. My nose stopped running and my sinus pain disappeared. Amazing!

Vita Blog: Being patient: starting a clinical trial

My latest Vita post for Breast Cancer Care:

http://www.breastcancercare.org.uk/news/blog/being-patient-starting-clinical-trial

Since my last post, I’ve been a busy bee. I celebrated my second cancerversary on 1 June, I made it to my friend’s wedding on Colonsay as well as celebrating the first of many 40th birthdays.

All this fun has been a good distraction, as I’m still stuck in cancer limbo. I’ve had lots of hospital appointments but I’ve not yet started treatment. There was some deliberation over whether I should have surgery or chemotherapy first. I’ve also been offered the chance to take part in a drug trial, which I’ve since agreed to, and this has delayed things even further.

Trials

Agreeing to go on a trial is a completely personal choice and not the right option for everyone. However, I did my research and sought the opinions of friends and family before coming to a decision. I also spoke to others who have taken part in trials and thanks to the Younger Breast Cancer Network, I even managed to chat to a few women who’ve been on the same trial.

The trial I’m taking part in is double-blind, which means that neither I nor my healthcare team will know if I’m getting the trial drug or a placebo. In case you’re wondering whether I’m completely mad, I will still be having chemotherapy. The trial drug AZD5363 (or placebo) will be given in combination with paclitaxel, a drug I’m sure many of you are familiar with.

The trial regime involves weekly cycles of paclitaxel along with twice weekly doses of the trial drug. I’ve heard that paclitaxel is more manageable than other regimes (I previously had FEC) although I’m keeping an open mind. Potential side effects include diarrhoea, hair loss, peripheral neuropathy (numbness in fingers and toes), mouth ulcers, nausea and vomiting, aching joints and muscles, itchy rash, fatigue, and anaemia along with the risk of infections. The side effects of the trial drug are similar. I can’t wait.

There are risks and benefits of taking part in a trial. On a double-blind trial there’s a chance you might end up in the placebo group and there are risks involved in taking a drug which has only been tested on a limited number of people. However, you are really closely monitored. For the first week I’ll be in hospital nearly every day, having every bodily function sampled and analysed. I will also have scans every 12 weeks to determine whether the treatment has been effective. The continual monitoring is one of the main benefits of being on a trial, and one of the reasons why trial patients often do well, even when they’re in the placebo group.

Being patient

One of the main disadvantages of being on a trial is that it takes forever to get started, as blood samples and scans all have to be verified by the drug company. Waiting for treatment to begin is incredibly stressful and I’ve reached the point where I’m desperate to start. It’s horrible knowing that there are renegade cells floating around your body and nothing is being done about it.

Last week I finally had a date confirmed. If they delay it again, I’m parking myself in outpatients until they inject me with something toxic.

The most important thing to know about a trial is that you can opt out at any time. The drug company want results, but they don’t want to put people’s lives at risk. I’m not getting paid, although this treatment will potentially extend my life and the lives of many other women with breast cancer.

Cancer buddies

Although I’ve been off work since my last recurrence in October, cancer keeps me busy. Aside from all the hospital appointments, I have a hectic cancer social life. I love my non-cancer friends and I hope for their sake that they stay non-cancer friends.

However, I’ve gained a whole new group of cancer-buddies in the last two years. There are the women I met at the Maggie’s Centre; at support groups such as Moving Forward and the Macmillan Hope course; and through Breast Cancer Care’s Younger Women Together. More recently I’ve found online groups, such as the Younger Breast Cancer Network, a great way to chat to other young women with secondary breast cancer.

No one else can comprehend what it feels like or understand the emotions you go through unless they’ve been through it themselves. There are things I talk about with my cancer buddies that I would never talk about with immediate family and friends. Menopausal symptoms, infertility, living with the fear of recurrence and worries about dying are all subjects that your cancer buddies will understand, but that you might not feel able to discuss with your loved ones.

Cancer is a devastating disease but one thing it can’t take is your ability to laugh. I met some cancer buddies for coffee last week and during our catch-up, one of the girls delivered some bad news. Said friend was laughing as she gave us the news, so our reaction was to laugh along with her. A man, ear wigging on the table behind, looked appalled at our reaction. Perhaps he thought we should be sobbing into our green tea or that we didn’t look sad enough. I felt like walking up to his table to comfort and reassure him that ‘It will be OK.’

The future

Friends who’ve seen me since my recent diagnosis seem surprised that I look so well. I should have explained in my last post that although I have stage 4 breast cancer, the metastases on my lungs are very small and hopefully they will stay that way. I am fit and healthy and aside from a little fatigue, I have no symptoms.

People are also curious about my prognosis and this is a question I’ve been asked by the benefits office among others. I find this question really upsetting and the answer is that I don’t know. There may come a time when I do want to find out, but at the moment I’m viewing my disease as a chronic condition. It’s something that I’ll probably always have. However, I’m not going to let it take over my life. People can and do lead full and productive lives with stage 4 cancer. There’s life in me yet and I have no intention of leaving this planet anytime soon.

My perspective might completely change when I start chemotherapy next week and assume the role of patient once again. This means that there might be some chemo grumbles in my next post.

Vita bloggers’ views are their own and do not necessarily represent those of Breast Cancer Care or Vita magazine.

 

Vita Blog: My Graduation

Here’s my latest Vita blogpost:

http://www.breastcancercare.org.uk/news/blog/my-graduation

After my last post I worried that I might run out of things to talk about. However, cancer is a sneaky and unpredictable disease. Whenever I relax and start thinking about a cancer-free future, the bitch comes back and bites me on the bum.

On 7 May, exactly two years after discovering the first lump, I found out I have cancer again.

Big Crocheted Boob at Manchester Art Gallery

Last Monday I had a CT scan to determine the size and spread of the disease, and on Wednesday a follow-up appointment to discuss the plan of attack.

Last week I cleared the decks and indulged myself in some major distraction techniques in preparation for bad news. I saw some weird art, tramped over hill and dale and did everything I could to de-stress.

A yoga, massage and meditation binge, in the days leading up to my appointment, really helped. I went to morning meditation on Vesak (Buddha’s birthday), believing that it might nudge the gods in my favour. However, this wasn’t to be.

On Wednesday afternoon I found out that the cancer has spread to my lungs. This means I have secondaries or metastases.

I’m now officially stage 4.

Finding the key

As is the norm with these appointments, it didn’t go as planned. I’d gone expecting a date for surgery. I was really hoping they’d chop off my reconstructed breast, the site of one of the new tumours, but because of the small lesions on my lungs, I’m going straight to chemotherapy.

I’m surprised at how calmly I took the news, but this was probably because the consultant didn’t do the apologetic ‘side-head’ manoeuvre usually associated with breaking bad news. It also helped that he didn’t use the words secondary, metastatic or stage 4. He described the small lesions on my lungs as a puzzle that needs fixing. In his words: ‘We just need to find the key to unlock the puzzle.’ Once we find the key, he hopes that things will ‘settle down’. I burst out laughing when he said this. I’ve never been so underwhelmed by such devastating news.

Breaking bad news

The past few days have all seemed a bit unreal, and it’s only now I’ve begun to tell people that it’s starting to sink in.

Whether you’re a cancer newbie or a career patient like me, the words ‘secondary cancer’ are infected with terror. It was only when I started telling friends that it really hit me.

Breaking bad news can be quite traumatic and I’ve learned from previous experience that it’s easier to wait until you have all the facts before telling everyone. You end up trying to comfort and reassure everybody else that you’ll be OK when you’re the one that needs comforting. This time I only told immediate family and a few close friends until I had more information. Telling fewer people definitely helped soften the blow.

I thought it might help if I read up on the new direction my cancer has taken. However, I just ended up frightening myself so I’ve stopped Googling for now. I am burying my head in the sand, but I would like to enjoy my last few days of freedom before the rollercoaster of cancer treatment begins again.

Treatment

I had all my previous treatment in Scotland where I’m originally from. However, this time I’ve decided to stay in Manchester and I have my first appointment at The Christie in a few days’ time.

My new home

I feel like I’ve reached a turning point and I think it will be a positive move having my cancer tackled by a different team of experts. It’s the biggest cancer centre in Europe, so being treated there means that I might have the opportunity to take part in trials not available to me in Scotland. It’s also within stumbling distance of my house, so it’s handy for emergencies.

There are many questions that have come to light since my recent diagnosis. I wonder if mistakes were made during my first round of treatment and whether I should have questioned things I wasn’t happy about. Hindsight is a wonderful thing but I can’t change what’s passed. I feel like I’m running out of lives so I’m not taking any chances this time round.

Being vigilant

The nipple tattoo I chatted about in my last post seems so trivial now. However, it was this, along with my lymphatic drainage routine, which led me to discover these new lumps. I discovered a tiny pea-sized lump on my reconstructed breast, right next to my nipple tattoo. The other lump is under my arm, in among scar tissue. I have an area of cording (hardened lymph vessels) in my axilla, but I discovered a new lump in this area, so I went to my GP to get this checked.

I’ve been incredibly unlucky, but I can’t stress highly enough that if something doesn’t feel right, you must get it checked by your GP or breast care team. Get to know your lumps and bumps and trust your own judgement. I delayed going to the doctor because I’d been given the all clear a few months earlier. I’ve been right every time.

Cancer is everywhere

Since my recent diagnosis I feel like a magnet for all things cancer related. I’m convinced there’s someone walking 10 paces ahead of me pasting up Macmillan posters. They are everywhere. People with cancer seem to be following me around too. A woman sat next to me in my Pilates class who had just had a mastectomy. The following day, I ended up sandwiched between two women at the eyebrow salon exchanging cancer-fighting tips. On both occasions I was feeling a bit fragile and I didn’t have the courage to say: ‘I have cancer too!’ Sometimes you’re just not in the mood for tumour talk.

Fun

Regardless of the crappy news I had this week, life goes on and this weekend I’m off to a wedding on Colonsay (in the Hebrides) with a 1920s theme. A friend pointed out that if they’d offered me a double mastectomy I’d be the perfect flapper girl – extreme fancy dress?! It’ll probably be my last social event for some time so I’m really looking forward to letting my hair down before treatment begins and it all falls out.

This weeks’ news means that my blog will take on a dramatic new direction. By the time I write my next post I will have started chemotherapy. I’ve dug out my wig Stevie. I might even get a Scouse Brow. I’m still in good health and I’m determined not to let cancer take over my life.

I hope I can share some tumour-fighting tips with you as I jump on the cancer carousel again.

Vita Blog: Flat batteries and nipple tattoos

Here is the link to the next exciting installment of my Vita Blog, also posted below:

http://www.breastcancercare.org.uk/news/blog/flat-batteries-nipple-tattoos

Flat Batteries

This week I, my laptop and my mobile phone have all had flat batteries. This is a problem when you have to write a blogpost but thankfully the laptop repair man works 24/7 and he came to my rescue over the weekend. He couldn’t give me a new battery, but he fixed the laptop. 

Fatigue is a common problem for cancer patients. However, I was lucky that it only really affected me towards the end of my chemotherapy. I power-walked my way through treatment, and if ever I was having a bad day, a steroid-fuelled (they make you go really fast!) stomp would help to clear the cancer-clutter. My lowest points usually coincided with the times when I was too tired to move.

‘Taking it easy’ is an alien concept to me and this got me into some ridiculous situations during treatment. There was the time I thought it would be a good idea to drag my not properly healed backside on a stomp around the village following reconstructive surgery (my right buttock was the donor site for my new boob). Or the time I nearly collapsed, due to chemotherapy-induced anaemia, while out walking in the hills.

Fatigue affects me more often these days than it did during treatment. It creeps up on me unexpectedly and I find it really frustrating that I don’t have the same level of stamina I had pre-cancer.

Those who’ve experienced cancer-related-fatigue will know it’s not the kind of tiredness that can be rectified by a good night’s kip. I wake up feeling tired and things that I would normally find easy really tire me out. I struggled at my Tai Chi class last week and it’s not exactly vigorous exercise.

The problem with fatigue is that you can end up trapped in a boom–bust cycle, something I’m really guilty of. When I feel well and have lots of energy I tend to push myself and, like the Duracell bunny, I keep on going until my battery is flat. Then I crash and burn and I’m forced into recuperation, feeling really frustrated because I’m not able to do anything.

I’m my own worst enemy and I know I should rest (I believe this is something normal people do), but I’m always too busy to take time out. This week we had a moth infestation, so I’ve done about twenty loads of washing and hoovered every nook and cranny of the house. It’s no wonder I’m knackered.

I’m also wondering whether my fatigue is related to the turbo-charged hot flushes I’m having on Zoladex.

Nips ahoy!

Before the fatigue set in, something really exciting happened. In fact, this might be what tipped me over the edge.

I reached the front of the nipple queue! Depending on where you are in the country, you might have waited anything between six months and one-and-a-half years. I was supposed to start last autumn but my recurrence took priority, so I was sent to the back of the queue again. Now, after nearly a year and a half of feeling blind on one side, I have the beginnings of something vaguely nipple-like.

I know reconstruction isn’t for everyone, but for me, getting a nipple is the icing on the cake. After the constant probes, tweaks and scans of treatment, it was nice to have a hospital appointment that was purely cosmetic and actually enjoyable.

I imagine many of you are living with a very different body to the one you had pre-cancer. Maybe you’ve got one breast, no breasts, reconstructed breasts, missing nipples, or perhaps you’re bearing the scars of lumps and lymph nodes removed. Not forgetting the ridiculous hairstyles (or lack of); the hot flushes, the lymphoedema (I call this ‘sailor’s arm’ – think Popeye) and all the other delightful side effects one gets used to both during and post-treatment.

I’ve got one reconstructed breast; one that’s been ‘perked up’; scars from axillary lymph node clearance; a shark-like bite on my right buttock, along with a head of curls that wouldn’t be out of place in a boy band. On a good day I look in the mirror and think it’s not that bad. On a bad day I feel like the neglected patchwork doll you find at the bottom of the toy box.

I’ve yet to dip my toe in the dating world, and I’m not sure what to do about the cancer question. When is the right time to tell someone that you have a body covered in scars, wonky breasts and will probably never be able to conceive? As my friends point out, the legacy of breast cancer will be a good w***er filter.

Aside from my wobbles about how men will perceive my body, the only other time I feel vulnerable is when I’m at yoga. I’m forever hoiking up my vest to check my blind boob isn’t winking at the teacher. I also find it uncomfortable sitting on my bum, as I’ve got a lot less padding on my right butt cheek. I’m sorted with a ‘foob’ for the top half, but I’d love to know if there’s anyone that supplies padding for the posterior.

My first appointment with the tattooist (who I’d wrongly assumed would be a leather-clad, buxom blonde but was actually a lovely nurse) was really good fun. There’s quite a lot of artistry involved in nipple tattoos – you need a good eye. However, I had a wee chuckle when the nurse pulled out a spirit level to check everything was symmetrical.

After marking the position of my new nipple, she then set about mixing colours. This was a lengthy procedure and a Pantone colour chart wouldn’t have gone amiss here. Who knew there were so many shades of nipple?

The combination of anaesthetic cream and the fact that I have very little sensation in that breast meant that I didn’t feel any pain during the procedure. There was a little blood, but I just craned my neck and looked the other way, my default head manoeuvre for anything involving needles or blood. I’ve got another three tattoo appointments and then I’ll have a minor operation to tweak the nipple into shape.

I asked the tattooist if she could do me some flowers as I’m thinking about getting some tattoos on my breasts.This idea came to me while lying on a beach, wondering if I’d ever be happy with my body again. I suppose it’s a way of reclaiming my body from cancer and creating something beautiful in its place. The trend for tattoos among the breast cancer community is growing and I’ve found a few sites that inspired me, in case any of you are contemplating a tattoo. There’s a charity called P.ink in the US which connects breast cancer survivors with tattoo artists and, in the UK, there is the tittoo movement.

I’ve not yet decided on a tattoo design. However, this is on my ‘to do’ list, after Operation Nipple is complete. In the meantime, I might heed the advice of a friend who suggested a more practical solution to both my fatigue and tattoo conundrum: get ‘Take It Easy’ tattooed on my arm.

You can read more from Katherine on her own blog killerkath.wordpress.com and also on Twitter @killerkath

 

 

Vita Blog: On being a NED

I’m now officially a blogger on the Breast Cancer Care Vita Blog, which I’m very excited about!! Here is the link to my Vita Blog Post which is also posted below:

http://www.breastcancercare.org.uk/news/blog/being-ned

I’ll post all my Vita Blog Posts here on WordPress and I hope to still carry on with my personal blog. In the meantime, thanks again for following and please feel free to share my blog with anyone you think may benefit from reading it. You can also find me on Twitter @killerkath.

Ignorance is bliss

I first noticed the lump back in May 2012. Like most women I get lumpy breasts, but this one was big. So big, I wondered how I’d missed it.

Pre-diagnosis, my limited knowledge of breast cancer could be summed up as ‘something that affects old ladies and Kylie.’ I was blissfully unaware and firmly believed that other people get cancer: the dust on the self-examination leaflet from my GP was testament to my ignorance. My rapid introduction to breast cancer awareness began in the weeks leading up to my diagnosis, when I found myself buying pink ribbons and hanging out in the local Cancer Research shop, naïvely believing that these charitable acts would somehow shield me from the life-changing diagnosis I was about to receive. The fantasy world I previously occupied quickly crumbled when I discovered that pink ribbons don’t protect you from cancer.

D-day

There’s never a good day to be diagnosed with breast cancer, however my D-day unfortunately coincided with the Queen’s Jubilee celebrations. On 1 June 2012, while the rest of the country were stockpiling booze and burgers, I was told I had Invasive ductal carcinoma (Stage 2B, Grade 3, ER+ and PR+). It was bad enough finding out I had cancer, but I then had to tell all my friends that our Queen party was cancelled because I wasn’t feeling well. Ironically I felt fine, but being told you have a potentially fatal disease doesn’t put you in a party mood.

When I think back to that weekend, it still stirs up really powerful emotions. The terror when the consultant said ‘if it’s cancer;’ the frantic phone-calls trying to get hold of family and friends while I awaited results; the feeling of unreality when they told me it was cancer; and the never-been-repeated-since ‘D-day’ risotto we ate that evening.

What followed was the craziest year of my life. I lost my hair, my breast and probably my fertility. The house I own was damaged in a major fire and my mum was diagnosed with breast cancer. I then had a recurrence in October 2013. Annus-horribilus doesn’t come close to describing the cataclysmic chain of events that occurred during that year. We even had a flood.

It’s been five months since my recurrence, which was successfully treated (I had an axillary lymph node clearance) and I’m now on my way back to that strange place called ‘normality.’

Getting back to ‘normal’

‘I bet you can’t wait to get back to normal’ is one of those things people say to you as you near the end of treatment. To the outsider this seems like a logical step, but when you’ve been a cancer patient your version of normal is warped beyond recognition. I’ve spent the best part of two years being stabbed with sharp objects and getting naked in front of strangers. I don’t miss those bits, however I do miss hospitals and now that I’m officially a NED (that’s ‘No Evidence of Disease’ as opposed to ‘Non-Educated Delinquent’) I love getting the chance to catch up with the nurses and doctors who treated me. It’s like catching up with old friends.

Those of you who have been through treatment will appreciate how meticulously managed the breast-cancer-treatment-pathway is. From diagnosis to the end of treatment, you have a hotline to the Breast Care Nurses, who hold your hand and guide you every step of the way. When I was hospitalised with an infection after my recent operation, the Breast Care Nurse had me trying on bikinis for my Christmas holiday. Having cancer is rubbish, but they make the journey as painless as possible.

I decided to come clean and admit my love of hospitals in my Macmillan support group last week: ‘My name is Katherine, I’m recovering from cancer and I love hospitals.’ After my confession I discovered I’m not the only one pining for people in blue uniforms.

I make light of my addiction to all things medical but it’s quite hard to let go of all that support with the dark cloud of cancer still hanging over you, because with cancer, it never ever leaves. Once you’ve had a cancer diagnosis, you are forever living with the possibility that it may return. It’s really hard for others to comprehend what this feels like, unless they’ve been there. A typical response is ‘you never know when you’re going to get hit by a bus.’ This may be true, but the difference for people like me, living with the threat of a recurrence, is that I’ve already seen the bus and next time, I don’t know if the driver will hit the brakes.

I will survive

There are many myths about survival and amongst these is the expectation that you should be revelling in your tumour-free status. You’ve survived, therefore you should be grateful, in fact you should be celebrating. There’s the added misconception that surviving cancer makes you a better, stronger person and that you will return to everyday life with a renewed passion screaming ‘I Will Survive’ from the mountain-tops. For many, the reality is quite different and it’s only when treatment ends, that you have time to recollect and make sense of what you’ve been through.

I’ve been through recovery once before, so I know it is possible to regain some sense of normality again, and there are many courses out there aimed at people going through or nearing the end of treatment. I can recommend the ‘Where Now?’ course at the Maggie’s centres, which I did last year, and the Breast Cancer Care ‘Moving Forward’ course.

After my recent recurrence, I managed to wangle my way onto a Macmillan ‘HOPE’ course (Helping Overcome Problems Effectively) which covers topics including managing stress, fatigue, body image and living positively with the fear of recurrence. I wrongly assumed that my previous experience might give me immunity against the emotional fallout that happens post-treatment but it’s been just as difficult this time, if not harder. For this reason it’s really important to meet other people who are going through the same emotional turmoil, if anything to confirm that you’re not going mad. This course was brilliant and not only have I made a whole new bunch of cancer-buddies, it’s given me hope.

There’s no doubt that having cancer changes you and if you’re lucky enough to survive, the best you can do is try and take something positive from the experience. Pre-diagnosis I drifted along, never considering that my time here might be finite, always expecting that good fortune would come my way. Being faced with my mortality has forced me to work out what I do and don’t want from life. Health and happiness are top of my list.

My cancer diagnosis has also encouraged me to develop some new survival strategies for life. The most important one is something I learned in the Girl Guides: ‘Be Prepared.’ You can’t plan your life around the possibility that you might get cancer, however my cancer diagnosis reinforced the importance of having a cushion of support (emotional, practical and financial) there when you need it. The second is to ‘Live in the moment:’ you can’t change the past and you can’t predict the future, so make the most of the present. And finally, remember to look out for that bus!

You can read more from Katherine on her own blog killerkath.wordpress.com and also at Twitter @killerkath

 

 

Love doesn’t come in a heart shaped box

I hate Valentines day. Always have, always will. Here’s why. I’m not a fan of prescribed romance. Whether you’re hooked up or single, being told that you should be feeling love, lust or passion for someone on a certain day of the year is a recipe for disaster. Love doesn’t come in heart shaped box and my own experience of Valentines day isn’t exactly a bed of roses.

There are the ones who think that a Valentines meal is the perfect time to air all the grievances they have with your relationship – cue uncomfortable scene in restaurant; the ones who would rather be be buried alive than commit to any display of public affection; and those awkward ones you’ve just started seeing who suddenly become ‘unavailable’ on Valentines day lest it commits them to marriage, babies and a life in suburbia.

http://www.davidshrigley.com

If you’re feeling sensitive about being single, Valentines Day is one of those dreaded annual events that reminds you of your non-conformity. Half of me strides haughtily down the fuschia-themed aisle in Sainsbury’s thinking ‘I’m glad I’m not part of that vomit-inducing consumer bullshit’, whilst the other half is being stabbed in the heart by a tear-stained rose. Sometimes I care, sometimes I don’t.

My favourite Valentines day ever, was one of those spontaneous nights that just kind of snowballed into something good. I went into Manchester with a friend to see Isobel Campbell at Night and Day. We hadn’t bought tickets, naively believing that we might get in. It had completely sold-out, so we went round the corner to Odd Bar. Here we encountered a pick-n-mix of after-work drinkers and misfits who had nothing better to do on a Tuesday night. Nobody copped off but there was a great cameraderie between people who were bonded by nothing more than the fact that they happened to be single on Valentines night. It ended up being a really great night.

Love definitely isn’t ‘in the air’ for me at the moment and my counsellor questioned me about relationships the other day. As you can imagine, having a relationship hasn’t been top of my priorities recently, and I have considered myself ‘off-the-market’ since my diagnosis in June 2012. Having cancer is a pretty legitimate excuse for being single. I’ve lost my hair (it has grown back), a breast (it won’t grow back but I’ve got a new one), my fertility (it won’t come back) and a lot more. Perhaps you’re worrying about being too fat or too thin but try throwing a mutilated body, infertility and a reduced life expectancy into the equation and suddenly that spare-tyre might not seem quite so important.

So how do you sell that one on Soulmates? At the moment I don’t care and my current priority is staying sane. I’ve only just come back to Manchester and I’ve been keeping myself busy with setting myself up with some cancer support. I thought I’d struggle to get support here, however the cancer support services in Manchester are really good. Along with my Macmillan support group, I’m also getting support from the Neil Cliffe centre at Wythenshawe hospital. Free massages on the NHS are one of the few perks of being a cancer patient.

I’m grateful for all the support the NHS has given me, however the one thing they can’t prescribe is a boyfriend. I was single before I had cancer so I can’t blame the disease for my marital status, however it does throw some interesting excuses into the mix. Aside from the scars and the asymmetry, I only have one nipple. On reflection this does seem like a daft excuse to take myself off the market. The nipple is next on my ‘to-do’ list.

I’ve never been a fluffy romantic however having cancer has turned me from a fantasist into a realist. I used to believe in unicorns and happy-ever-after, but the dreams I have now are firmly based in reality. Besides, life could be so much worse. I could be on a bad date in a crummy restaurant accepting a cheap rose from someone I never want to see again.

“I’m single because I was born that way.” – Mae West

Feliz navidad y feliz año nuevo!

I’m writing this post on my return from Fuertaventura, on a plane full of pissed up Scottish holidaymakers. Call me a snob, but picking your nose, getting up on your seat and shouting “have ye nae got any o’ those big cans o’ Strongbow?” is neither behaviour becoming of a lady, nor the best way to represent your nation. I think said lady, sat next to me, isn’t sure what nationality I am, so I’m keeping up the pretence of not being Scottish, to avoid getting caught up in a drunken altercation about the Spanish trolley dollies not having any “f’ing Strongbow”. Makes me proud to be Scottish, so it does.

I’ve had a fantastic two weeks in Fuertaventura: my cancer-free-christmas present to myself. I booked this holiday back in October, not knowing if I was going to live or die and was adamant about having a final-fling. Now I’ve been given a reprieve and this holiday has become a celebration, a chance for me to rest and recover from the cancer that’s taken over my life for the last 18 months. Admittedly, I hate Christmas, so it’s also given me a legitimate excuse to escape the country for the festive period. I’ve wanted to get away from Christmas for as long as I can remember and found myself in good company in Fuertaventura, surrounded by a bunch of sun-worshipping santa-haters.

Feliz Navidad

Drunk lady has just blown her nose – sans tissue – into her own hand. Very classy, although I suppose this is the risk you take, when you pay £66 for a return flight to anywhere.

Ghost of Christmas Past

My contempt for all things Christmassy goes back a long way. It was fun when I was a kid, but my Christmas’ have always been tainted blue. I’ve never been a fan of forced jollity. Fun for me is spontaneous and unexpected, it doesn’t come with bells on and it’s definitely not glitter-wrapped. My ghost of Christmas past remembers the tangled web my childish head weaved between ‘my father’ and ‘our father’. You see, Christmas day is Jesus’ birthday but it was also my dads’ birthday, and in my warped little 5-year-old brain I truly believed my dad had some divine connection with Jesus. My belief resulted in my becoming a temporary Christian with ‘Jesus Christ Superstar’ my annual TV pilgrimage. My mind harks back to the Christmas day tantrum, when my brother won the TV battle to watch David Attenborough’s ‘Life On Earth’.

My devotion to the bearded one was swiftly knocked out of me when I cracked my head open at Sunday School. I’ve had issues with Sir Dave ever since: give me Jesus grooving to a 70’s beat over Mr tortoise-face any day.

Ghost of Christmas more recently

My ghost of ‘Christmas more recently’ is pretty bloody miserable, which is why I decided to leave the country. I have a ridiculously large family, for which I am eternally grateful, but in more recent times I’ve begun to feel like an overgrown child at Christmas. When you don’t have a partner or children of your own, Christmas is the empty stocking that no-one has filled, reminding you that you’re not part of the ‘over-30s-settled-with-a-nice-house-and-family-brigade’. If you felt sad and single before, Christmas is a sure way to ramp up those feelings of inadequacy by about 500%. Aside from the ‘Kath + O’ wedding invitations, it’s the social event I dread most as a single person.

A message from David Shrigley

Cancer cast an even darker cloud over last years’ festivities. It wasn’t a happy time, and Christmas has the annoying habit of magnifying all of those negative emotions that you manage to keep under wraps for the other 51 weeks of the year. If you felt rubbish before, then the relentless ‘HO-HO-HO-SHOP-SHOP-SHOP-KEEP-SMILING-COS-IT’S-CHRISTMAS’ message rammed down your throat, from mid-October onwards, is the perfect recipe for a less than Joyeux Noel.

Last twix-mas, it all got too much for me. I had to escape, and an emotional reunion with an old school friend turned into the mother of all hangovers. What started as a civilised lunchtime reunion became rocket-fuelled champagne-bombers on an empty stomach. I somehow managed to drag myself into hospital for a check-up and scan at 9am on New Years Eve.  CT scans and hangovers are a lethal cocktail and an experience I never want to repeat.

Ghost of Christmas Present and sometime in the near future

This Christmas I discovered a whole new world. A world where it’s okay to say ‘I hate Christmas’. Being in Fuertaventura at Christmas was like joining some weird support group for the festively disillusioned. Does seeing the colours red and white together bring you out in a rash? Would you be happy if you never had to eat turkey ever again? Do you believe the world would be a better place without that ear-bleedingly-irritating Slade song? Then come to Fuertaventura where no-one gives a shit what day of the year it is!

David Shrigley

My Christmas in Fuertaventura might be the best I’ve ever had. The festivities started on the 23rd and there was no crazy shopping frenzy, no making a twat of yourself at the office party, no gorging yourself on mince pies and no television. Our Christmas day was a delicious cocktail of beach-yoga, swimming and Factor 20. Sunshine was my tinsel and olives were my sprouts. A lone piper played Christmas carols on the beach. A nostalgic nod to Christmas’ past and a little slice of festive heaven.

Going on holiday is a time for reflection and although I’d love to tell you that I had an earth shattering epiphany whilst lying on the beach, I simply enjoyed having time to empty my head of the cancer-clutter. The only decisions I came to, were to have more holidays and to get a tattoo. No, it won’t be a dolphin.

Feeling the sun on my body and sand between my toes was the best present I could have asked for. Every ray of sunshine a final ‘Up Yours!’ to cancer.

My ‘ghost of Christmas sometime in the near future’ might not be spent lying on a beach, but it will definitely be a healthier, happier one and who knows, next year I might even be tempted into having a turkey sandwich. All that remains to say is:

Cancer: It’s the pits

“Enemy combatants this is your final warning, please evacuate. I repeat this is your final warning!”

Everyone loves a military cliché when it comes to cancer, so my secret mission for this blog post was to try to squeeze in as many as possible. I must stress that military clichés are reserved for people with the disease and there’ll be no bravery awards on my watch.

When I filled out my cancer return for 2012/2013 I wrongly assumed I’d repaid my karmic debt and my recent diagnosis proves that I still have plenty of credits in the bad-shit bank. My sense of normal has been severely warped in the past couple of years and I wonder if I’ve just resigned myself to life being shit, as it took the nice young doctor examining me before surgery to remind me how abnormal my life has become. His four words “you’ve been in the wars” were enough to unleash a torrent of tears.

Two weeks ago I had surgery – axillary clearance – to remove the lymph nodes from my right axilla: that’s the ‘armpit’, or ‘oxter‘ to you and I. In the war against renegade cells, the battleground of my body has been subjected to another assault. Unlike the sentinel node biopsy I had last year, this operation was much more invasive and they ripped out half my armpit. I think the NHS should scrap the latin and start using slang: “Aye we’re gonnae clear yer oxters” sounds much less intimidating than the militaristic “we’re going in for axillary clearance”.

As is the norm in my world, I thought I’d be fully recovered after a couple of days, however it’s taken me much longer to recover than I expected. You’d think my body would be hardened by previous battles but perhaps the relentless chemical and surgical assaults are starting to take their toll. They do a lot of rooting around to get to the nodes, nerves can be damaged, and tissue-fluid can build up in the axilla (armpit). This can result in a number of not very pleasant side effects. 

For the first couple of days, there was a definite rumble in the jungle of my armpit: I was mightily pissed off about having to go through surgery again, so it’s understandable that my armpit might want to communicate its discontent. By the end of the first week I was starting to resemble a human-bagpipe, and could have joined a ceilidh band with the ever-growing bulge and chorus emanating from my right oxter.

An extreme reaction to axillary lymph node clearance

I’m surprised my body isn’t screaming, the damage that’s been inflicted in the last year: the FECin Chemotherapy; the now seemingly pointless Sentinel node biopsy; the Mastectomy with bottom transplant; the skin-shedding Radiotherapy; the ‘let’s give the other one a bit of attention’ Mastopexy; and the bagpipe inducing Axillary lymph node clearance. That’s 4 operations, some heavy duty chemicals and a ton of radiation.

It’s not a competition, however I am considering starting a new Facebook game called “Disease Top Trumps”. Having been diagnosed with cancer twice in the last year, I do get slightly irritated when I read a Facebook status update that says “feeling rubbish today, sore throat 😦 “. It’s all relative and everyone’s entitled to a whinge, but from where I’m standing, anything that can be treated with paracetamol does not require a Facebook status update, and the next time I see one of these updates I’m going to find it hard not to play my cancer top trump: “I HAVE CANCER – WOULD YOU CARE TO SWAP?!” Or maybe I’ll just start doing tumour status updates: “Tumour feels bigger today, think it’s terminal 😦 ” and see what response I get.

I promise I will never give tumour status updates on Facebook, in fact I hope I never have to talk about this insidious disease ever again (at least not my cancer), because on Wednesday something incredible happened. Last week I had appointments, with both the surgical and oncology teams, to get the results from surgery and discuss the rest of my treatment plan. The results were irrelevant, I knew I was starting chemotherapy again in December, I just wanted a date, so that I could book a much needed holiday from the cancer that’s taken over my life for the last 18 months.

My apathy turned to shock, when I received the news, that of the 18 lymph nodes removed, only 1 was cancerous. The minimum requirement for treatment is 4 positive nodes and I only had 1, which means no further treatment, besides monthly injections of Goserelin (Zoladex).

You’re probably wondering how did this happen again? The answer is nobody knows. They can’t tell if the tumour was completely new, or if it stemmed from cells which migrated from the previous site. I had quite a large gap between finishing chemotherapy and having my mastectomy during my last course of treatment, so there’s every possibility that a few cells jumped ship when no-one was looking.

Obviously I’m ecstatic that I don’t have to go through chemotherapy and radiotherapy again, but it’s scuppered my weight loss & hair removal plans. I’ve been fattening myself up in preparation for the chemotherapy I thought I’d be having. The chemotherapy diet is cancer’s best kept secret: ‘Feeling flabby? Watch the pounds melt away on the chemo-diet!’ I also expected to be as bald as a coot by xmas so I gave up on depilation: losing your eyebrows and lashes can make you look like an alien, however it means you don’t have to shave your legs for a whole 6 months. Perhaps if they emphasised these positive side effects of chemotherapy they might get more takers?

Dorothy and Alice contemplate the meaning of life

Those of you who know me well and who follow my blog will know that this recent recurrence has thrown my whole life into complete disarray, again. Friends and family have commented on how well I’ve coped with my recent diagnosis, but I’m a great believer in bottling things up & letting them out in inappropriate places. I’m joking, it’s actually really hard to contain your emotions when you think you’re going to die, and simple things like a trip to the supermarket are made even more stressful by the prospect of bumping into someone you know or bursting into tears at the checkout. You realise that the small-talk that people make in these environments is mostly just meaningless waffle. When people ask “how are you today?” they don’t want to know the truth and this for me is one of the most difficult parts of having cancer: it’s an exercise in people management. You’re continually thrown into situations where you have to predict and mop up other people’s emotions. Having the disease is stigmatising enough, but I’ve been in so many situations where I’ve lied because I can’t cope with other people’s reaction to my disease. It’s much easier to say “yeah I’ve got breast cancer but I’m feeling really positive and treatment is going really well” than to say “actually I’m beginning to question the meaning of my existence and wondering what I’ve got to live for”. It’s deep man, but it’s normal to ponder these questions when the grim reaper comes a knockin’.

I was ecstatic when they gave me the good news on Wednesday, however my elation has faded into quiet contemplation as I consider the enormity of what I’ve been through. I’ve survived cancer for a second time and I’m trying not to feel bitter about my recurrence, because if I do that, it means the cancer has won. I need time to lick my wounds and get my head around the fact that I’m not going to die before I start thinking about life again. I’ve earned my stripes, I’m hanging up my boots and I hope I never have to face this disease ever again.

My breasts are trying to kill me

Shit happens

It’s been a while since I’ve written anything for my blog, mainly because every-day life is quite dull & I don’t think anyone is interested in knowing what I’ve had for dinner. Given the choice I’d always take dull, or at least normality over drama, however it would seem that ‘Him up There’ is determined to ensure my life will never be that way.

Around a month ago I found a lump in my armpit, on the same side previously affected by cancer. I was due for my 6-monthly check-up at the start of October so I’d pre-warned my breast care nurse about the lump. Pre-warning the breast-care-team meant, that when I had my check-up a few weeks ago, I was able to have the lump scanned and biopsied on the same day. Two weeks ago I received the devastating news that the cancer is back. Last week I had a CT scan, to determine whether the cancer has spread elsewhere in my body. Since then it’s been an anxious wait for results.

I’ve tried to avoid telling too many people this time, as I couldn’t face the rigmarole of having to break the news to everyone when I don’t have the complete picture myself. I’ve learned from previous experience that telling other people is just as traumatic as finding out yourself. A strange role-reversal occurs, where you end up having to comfort and reassure others that everything is going to be alright – “it’s ok, it’s just a tumour, nothing to worry about” – when you don’t actually know yourself.

Scanxiety

Scanxiety is the worst kind of anxiety, you’re stuck in a no-man’s land, not knowing if you’re going to live or die. There’s the pre-scanxiety leading up to the scan, a brief moment of relief when it’s over, followed by the post-scanxious wait for results. I tried badgering everyone, from the radiographer who did the scan – “sorry I just take the pictures” – to the breast-care nurses who always do their best to reassure, even when they don’t know the answer.

Extreme scanxiety of the heart fluttering variety, which I’ve experienced much of over the past week, is quite terrifying. Every physical ailment becomes a sign that the cancer is spreading. The heart palpitations are caused by a tumour on the heart, the achey back is undoubtedly caused by mets on the spine, and the dizzy spells must mean it’s spread to the brain. It’s only a matter of time before I’m being fed mince & tatties through a plastic tube. On my train journey back to Manchester last week, I felt so rough, I actually wondered if I was dying. This turned out to be a dose of ‘Hand, Foot & Mouth’ caught from one of my mini-relatives.

Conversations and phone messages from health professionals are scrutinised and misinterpreted: they all know you’re going to die, they just want to make you wait 10 days before breaking the news. A message from my consultant which said “ try to enjoy yourself this weekend”, I interpreted as “try to enjoy yourself this weekend because it might be your last!!”. My anxiety levels were so high that the only way was down and I’ve been feeling much calmer these last few days. I’m not resigned to it, but like I’ve said before, shit happens.

That was then, this is now

Although I’ve been psyching myself up for bad-bad news, today I had some good-bad news. The good-bad news is that I’m booked in for surgery next week. My CT scan showed that the cancer is contained and that it hasn’t spread beyond my lymph nodes. Once I’ve recovered from surgery I’ll be having chemotherapy – different drugs this time & I might get to keep my hair – followed by more radiotherapy. It’s not great, but it’s better than the bad-bad news: if it had spread the only option would be palliative chemotherapy.

Life & Death – David Shrigley

I’ve only recently started to settle in and enjoy Manchester life again and it’s been good returning to normality, however I’ve decided that my only option is to move back to Scotland for treatment. Although I’ve got an amazing group of friends in Manchester, I know I’ll need the support of my family whilst I go through treatment again. Besides, no-one else can substitute a mum hug when you’re feeling rubbish.

So here I am, back on the cancer merry-go-round. Although the news might come as a bit of a shock to many of you, I’ve had nearly two weeks to come to terms with the fact that the cancer is back. The results from my scan today came as such a huge relief and I feel like I’ve been given a second chance. I’m just ecstatic it’s not metastatic.

Getting even

The past few weeks have been really crazy. As well as moving out of two houses, moving into another, getting my Salford house fixed up for rental and getting myself ready to go back to work, I managed to squeeze in some reconstructive surgery. The surgery was all last-minute and two weeks after moving back to Manchester, I found myself back at my parents, recuperating.

I also had my first Cancerversary on the 1st of June, my AD 1, so it’s been a strange time of transition and recollection. I had to pinch myself to check I was all still there when I woke up last Saturday.

Being back in Manchester was weird. It’s not like I haven’t visited, but since moving back, everything feels completely different. It’s as if somebody hit the pause button on Manchester world. Now I’m back on the carousel, everything is moving in fast forward, and I could quite happily jump off again.

A postcard from Manchester

The operation last Monday gave me some respite and allowed me to delay my inevitable return to life. My version of normal has been severely warped over the past year. I’ve been living in a completely different world, one of hospitals and support groups. I’ve faced my mortality at an age when most still consider themselves immortal. It feels like I’m waking from the dead.

So here I am again, all taped up, a little bruised and swollen but another step closer to normal. Post-cancer, I’m so blasé about any kind of medical intervention that I wasn’t the slightest bit phased by the prospect of more surgery. I have absolute faith in the plastics team at Ninewells, and before the operation my main concern was placing my order for post-op coffee and toast. Hospital toast always tastes so good. Why is that?

The operation I had last Monday is called a Mastopexy: Greek for “up-lifting of droopy breasts”. This doesn’t require any explanation however I’ve had some tweaks and adjustments on my healthy breast to balance things out. People asked if I wanted to go up a few sizes, but this was never an option, besides, I’m neither blonde nor dumb enough to want double GG’s.

It’s now 10 days post-surgery, and today I returned to hospital to get the dressings removed. I was anxious about seeing my breast, as all I’ve seen for the past week is a bruised, swollen mass, however I am really pleased with the result. As with my reconstructive surgery the only scarring is around the nipple, so it’s a very neat job. It feels good being symmetrical again and I’m proudly sporting a much younger, perter looking pair than I had before.

Mine aren’t mystic, just symmetrical

I’m trying to be really positive about the breast reconstruction saga, as my body has been mutilated in so many ways over the last year. In a previous life I tried internet dating, and I wonder what my profile header would read today: ‘Breast cancer survivor seeks short-sighted man. Must like scars’.

In ‘more cancer news’, there have been some interesting developments in both mine and my mother’s treatment for cancer. Mum has recalled that some of her aunties may have had breast or ovarian cancer, suggesting a familial history, so our oncologist has recommended we go for genetic screening. It does have implications for future treatment, however at this stage I’m not worried, just curious to find out more.

The chances of mum and I having a hereditary link like Angelina Jolie are very slim, as only 5% of breast cancers are caused by genetic mutations. If we do, there’s a possibility we will be offered preventative treatment. I’m all for prophylactic surgery and Angelina has done much to raise the profile of hereditary breast cancers, however I think there should be more focus on preventing the 95% of cancers that aren’t caused by genetic mutations, as research shows that a large proportion of these are preventable.

There are many things I could have done to reduce my risk. I could have reproduced when I was younger & more fertile; I could have breast-fed those babies for 12 months; I could have used a non-hormone based contraception; I could have reduced my alcohol consumption and I could have made my life a bit less stressful. These are all factors which can alter hormone levels in your body, huge risk factors in a cancer like mine which was both Oestrogen+ and Progesterone+, risks I only became aware of after my diagnosis. This angers me, as I think many young women are unaware of the long-term consequences of lifestyle choices such as delaying parenthood. It’s no coincidence that the rise in breast cancer in women under 40 is rising steadily with the average age for childbirth.

Hindsight is a wonderful thing and I’ll never know exactly what caused my cancer, however there’s no point in blaming yourself. How many of you were ready to have children before you were 20? How many of you considered your mortality when you were out enjoying yourself at 21? How many of you actually read the ‘Risks & Contraindications’ blurb on your contraceptive pill packet?

So what can you do to minimise the risks? Keeping fit and maintaining a healthy weight are the main ones and this was my primary goal throughout treatment. Diet is really important and many anti-cancer diets promote a plant-based, sugar-free, dairy-free diet. Breast-cancer-prevention-diets suggest consuming lots of green tea, broccoli, mushrooms (shiitake, maitake, reishi) and as much turmeric as you can stomach in one day. Vitamin D is really important too, as studies in the US show that the incidence of breast is much lower in the sunshine states. Alcohol is a huge risk factor and research shows that the risks increase exponentially with consumption. As little as 1.5 units a day (that’s 125ml of wine or  ½ a pint of lager) can increase your risk by 5% and each additional daily unit increases the risk by 7-10%. Perhaps it’s time to ditch that ‘healthy’ glass of red?

Being healthy during treatment was much easier as it gave me a focus, but back in the real world, avoiding the bad stuff is really difficult. I try to avoid dairy, then someone buys me a cream filled cupcake; I want to reduce my alcohol intake then someone offers me a glass of wine; I need to minimise stress in my life but I have to go back to work; I want to eat less meat, then my mum cooks me the best beef casserole in the world. It’s incredibly difficult to eliminate all of the risks, so if anyone can tell me how to survive as a tee-total, sugar-avoiding vegan whilst everyone around me is gorging themselves on red wine and steak then I’d love to hear from you.  So although I am trying, perhaps I should heed the guidance Yoda gave to Luke Skywalker:

“Try not. Do. Or do not!! There is no try”

Blue Mum

Blue Mum

I said in my last post that I wasn’t going to write about cancer anymore, however in the unpredictable relay of life, the cancer-baton has been swiftly passed to my mother who was recently diagnosed with breast cancer. Before you all start panicking, she’ll be fine, she’s just a little blue, really she is.

Mum’s diagnosis came as a massive shock. We were all relieved at the end of my treatment and looking forward to moving on, when we found out. Unlike me, who went from check-up, to life changing diagnosis in less than two hours, my poor mother had to wait nearly a month to find out the extent of her cancer. Waiting for results is horrible and mum was already psyching herself up for wigs and mastectomies by the time her appointment came round.

After a nail-biting month of not knowing what was going on, it was good news and on Thursday she had a small operation to remove the lump and sentinel lymph-node. After that she’ll have 3 weeks of radiotherapy & 5 years of hormone therapy. Job done.

The C-word has become far too familiar in our family of late, although having gone through it once already, we knew what to expect – radioactive injections, blue boobs & radiation burns – we know the drill. Mum is home now and doing really well. I’m just relieved as it could have been so much worse.

Farewell

I’m moving back to Manchester soon and saying goodbye to cancer world. I’ve had nearly a year in Paris Cottage country hospital and although the glorious countryside and Michelin star menu, courtesy of Jim and Doreen, is tempting me to stay, I’m ready to leave now. It’s beautiful here and it’s been a great place to rest and recover but I’m beginning to feel like I’m in Groundhog day. I’ll miss the country walks, the chat with village folk, the old fogies at my tai-chi group (which I secretly think might be a cult), the roast dinners, the getting to know my nieces and nephews, the hanging out with friends old and new, the going for coffee in beautiful places and most of all, the love and support my family & friends have given me over the past year.

Goodbye sheep & goats

Of course I can’t forget the Maggie’s centre which has been such a huge part of my life, as have all the friends I have made through having cancer. It’s a unique bond you form with people who’ve been through the same experience: the sharing of stories and battle scars and the hugs & tears over endless cups of tea. It’s really hard to put into words what Maggie’s does but you don’t have to be brave there, everyone just gets it.

I’ve been busy packing this last week and sorting through the debris of the last year. There are the chemo-beanies, the Picc-line sleeves, my wig Stevie, the surgical-socks and the pic’n mix of drugs left over from chemotherapy, all of which I’m not sure what to do with.  I don’t know whether to bin the lot or keep them for ‘just in case’. Stevie might be dragged out for weddings, but it’s my beanies I’m most attached to. Not only did they keep my head warm when I was ‘as bald as a coot’, they were my armour, they shielded me from prying eyes, so perhaps I’ll frame them or at least give them the burial they deserve.

It’s nearing the anniversary of my diagnosis and my mind is on replay. The anxieties I felt in the weeks before my diagnosis are now replaced by fears of recurrence. I’m now having 6 monthly check-ups and although they recommend vigilance, I have already convinced myself I have metastatic cancer. You might think I’m joking, but if you were in my shoes you’d be just as neurotic. There’s no way of distinguishing between the twinges of tissue healing (normal after a mastectomy), hormonal aches and pains and what could be potentially new tumours. They gave me the all-clear a couple of months ago, however the reality is that even the doctors don’t know unless they find something palpable. Scans are pointless unless you can feel a lump and even the best scanner in the world won’t pick things up at a cellular level. Obsessive self-examination it is then.

http://www.davidshrigley.com

I met up with a cancer-buddy today and like me, she worries about the cancer returning. We were joking about how we’d already started planning the end of our lives, how we laughed! Tie up all those loose ends and have the holiday of a life time, that’s my plan. It sounds morbid but you have to think about these things. I’m not planning on dying any time soon, I’m just keeping my options open.

Now I’m on the other side of my annus-horribilis, I still find myself asking ‘did this all actually happen?’ I got cancer, my house burned down and then my mum got cancer, could life get any worse?! The answer is YES it probably could and if I’ve learned anything from this past year, it’s that life can throw all manner of unexpected shit at you and the best you can do is ‘BE PREPARED’ when the next pile of shit hits the fan. Get knitting that blanket of love and security because you never know when you might need it!

Of course it’s not all bad, good stuff happens too and I’m looking forward to a bit more of that. I have a little thing called life to look forward to.

The spice of life

Tomorrow I will be celebrating both the end of my treatment and the beginning of a new chapter in my life. I’ve been thinking about how I want to celebrate and I have a few things on my bucket list: a month in Fuertaventura, a blow out in Manchester and some good old fashioned primal-screaming. The first two will have to wait, and I’ve yet to find a suitable location for the screaming, so I’ve decided to go for a curry instead.

Food is an emotive subject, and for me, curry is infused with both drama and passion. It’s more than just fuel.

Curry is the food that sustained me in the week following my cancer diagnosis. The curry-thon I had with friends on the Jubilee weekend of my diagnosis, is one of the most memorable meals I’ve ever had. We cooked on a biblical scale and the food was divine. The sanctuary of curry and comfort of friends held me together in those first few days.

From the curry god

My kinship with curry stems back to my childhood. I spent my formative years growing up on a council estate in Perth, where my parents’ Manchester accents and cosmopolitan tastes made our family unique. This was the 1970s, a time when spaghetti-bolognese was considered exotic and chill-con-carne was as hot as it got. Supermarkets hadn’t reached small-town Scotland and coriander was a condiment of the future.

Curry is one of the first meals I can remember my mother making, although it wasn’t until I started school that I appreciated how unique and experimental my mother’s cooking skills were.  In Scotland home-cooking was still very traditional – for most it was meat & two veg – and beef curry was a novel experience for my school friends back in 1970s Perth.

Oddly, curry is also the food I associate with my father’s death when I was 4 years old. The scattered, sun-bleached memories I have from that time, are steeped in sadness and rather bizarrely, beef curry.

The majority of palettes, even Scottish ones, have become more sophisticated since the 1970s, but back then I just wanted to be like everyone else. All I wanted was mince and tatties, in fact I just wanted Smash. To me this was the ultimate in sophistication: mashed-potato made by martians. I’d quite happily have survived on a diet of Smash, Creamola Foam and Space Dust. I didn’t appreciate it at the time, but mum was baking her own bread and doing things with lentils, so I never got the Smash.

We’ve always eaten curry as a family and Madhur Jaffrey’s recipes were a family favourite, however my spicy escapades really took off when I first went to live in Manchester. My then-boyfriend used to come and visit, and a mutual affection for the spice god, led to us spending much of our time in the curry mile. Infatuated with the the glitz and sparkle of the mile, his addiction was worse than mine and I began to wonder whether our relationship was becoming curry-dependant.

Best curry in Manchester: http://www.corianderrestaurant.co.uk

A student placement in Sri Lanka sealed our chilli romance. In Sri Lanka, the roti ruled and curry was a way of life. We ate, dreamed and breathed curry. Sweaty curry-pits were de rigueur. ‘Feel the burn’ took on a whole new meaning in Sri Lanka and here I learned a valuable lesson: food shouldn’t hurt.

Our joint affection for all things spicy was cemented upon our return to the UK when he got a job delivering, yes you’ve guessed it, curries.

Since my cancer diagnosis, my love affair with curry has taken on a new and interesting twist. I’ve learned that many of the components of curry have cancer fighting properties. Turmeric, garlic and ginger all have immune-boosting, tumour-busting properties. I wonder whether my years of eating curry helped keep the cancer at bay and stopped it from spreading.

The Curry Mile – I don’t recommend it

My spice trail has taken me around the world. From dal-bhat in Kathmandu, to Balti in Bradford, my travels have ensured my chilli barometer is set to high. Nowadays, I prefer my curries just on the cusp of blow-your-head-off. For me, anything without a bite is pointless. You might as well have sausage and chips.

Now as I reach the end of the cancer-caravan, it’s my faithful companion curry that I turn to again. Our relationship has been a tempestuous one, but I couldn’t live without my fiery-fuel. If spice is my god, then curry is my salvation. It warms the heart and nourishes the soul, and I know that as long as there’s curry in the world, I will be ok.

PS. This is probably going to be my last post for some time or at least my last cancer related post so I’d just like to say a BIG THANK-YOU again to everyone who has taken the time to follow my blog. Also a HUMONGOUS THANK-YOU to everyone who has supported me over the past 9 months – I couldn’t have done it without you!! Much love Katherine x

The End…..nearly

I’ve had a severe case of writers cramp recently, hence the delay since my last post. I’ve started and not finished posts on various topics including – ‘My love/hate relationship with Facebook’ and ‘Magical Thinking & why having Cancer doesn’t make you  immune to house fires’. So, I’ll keep it brief.

Radio gaga

I’m in the final phase of treatment now – radiotherapy – and I’m sorry to report that it’s incredibly dull. There are no needles, blood, or medical emergencies. I’m told localised hair loss can occur, although I can safely say a hairy chest has never been a problem for me. Apart from the 2.5 hour round trip to hospital, my biggest grumble is that I look like a battery with all the + and – on my chest. I reckon I’m super-charged at the moment so if your car won’t start, do give me a call.

Where Now?

I feel like I’m in cancer limbo at the moment. I’m not sure whether to call myself a patient or a survivor. The cancer has gone, yet I’m still being treated for cancer. It’s a strange place to be in.

I’m battle worn and weary and in an ideal world I’d like to jet off to a sunny little island and quietly gather my thoughts. Currently that’s not an option, so the next best thing is a course at Maggie’s – ‘Where Now? –  designed for folk like me, nearing the end of treatment and pondering life after cancer.

The transition from cancer patient back to everyday life is a difficult one and the end of treatment can be a frightening time. Having lived through the nightmare of cancer treatment, survivors are often left feeling abandoned by the medical process.

Re-adjusting to life as it was before, can be problematic and many survivors struggle with mental health issues in the months and years post-treatment. Anxieties about recurrence are common, however there are often financial, emotional and physical issues to contend with.

These David Shrigley rabbits know what they’re talking about

There’s pressure to fit back in and get ‘back to normal’ as soon’ as possible. You’ve survived, therefore you should be grateful, in fact you should be celebrating. There’s the added misconception that surviving cancer somehow makes you a better, stronger person (see Lance Armstrong before his fall from grace) and that you will return to everyday life with a renewed passion, screaming ‘I Will Survive‘ from the mountain-tops. When you don’t want or feel these things it’s hard not to feel like you’ve somehow let the side down.

There’s no doubt that having cancer changes you and if you’re lucky enough to survive, the best you can do is try and take something positive from the experience. I’ve lost so much but I’ve had time to work out what I do and don’t want from life . Health and happiness are top of my list.

When I wander out of my last radiotherapy session in a few weeks time, I will have had no less than 100 cancer related appointments since my diagnosis on the 1st of June last year. My role as cancer patient will come to an end and hopefully never be reprised. I’m not sure how I will feel when I walk out of that final appointment, but if I need it, I know that Maggie’s will be there with open arms.

A Cancer free Christmas!

I wanted to finish the year on a high and although I don’t feel like champagne & fireworks just yet, I might have a wee sigh to mark the end of my 2012.

http://www.davidshrigley.com

Cancer can get to f**k

Last week I received the pathology report from my operation and it was mostly good news.

The cancer was an aggressive Grade 3 and although my 60mm tumour hadn’t shrunk, they assured me many of the cancer cells had died. It was an inside job, the FEC feckin worked.

Even better news is that they have removed all of the remaining cancer and I have clear margins, probably the best Xmas present I’ll ever have. If cancer is the Death Star, the margins are the energy shields of healthy tissue around the tumour and mine were fully activated. Although the margins were only 3mm in places, the consultant reminded me that cancer cells can’t jump, further verification that the cancer hasn’t spread. The Force is still strong.

The Grade 3 worried me however I’ve since learned that Stages and Grades are completely different. The Stage describes the size and spread of the cancer, whilst the Grading refers to the speed at which the cancer cells are growing. The Grade can only be determined once the tumour is removed. My diagnosis, back in June, of Stage 2B Breast Cancer, meant that the tumour was large, but hadn’t spread. The aggressive Grade 3, means that it had the potential to make its way towards my lymphatic and vascular systems although thankfully it hadn’t. I’m not completely convinced, but perhaps it’s time I start believing the results.

I used to eat, sleep and breathe cancer, but since the operation I no longer think about cancer all the time. Now the cancer has gone and it’s been replaced with new worries. Will it come back and how can I be sure that every last cancer cell has been removed?

These concerns will be answered in the New Year when I have the double whammy of radiotherapy and Tamoxifen to look forward to. It’s a belt and braces approach. What hasn’t been nuked by chemotherapy and surgery will most certainly be annihilated by radiotherapy. Radiotherapy is final reassurance that the cancer is gone and Tamoxifen will ensure the bitch don’t come back. As my mate Jenny succinctly put it “Cancer can get to f**k!!”

My annus horribilis

This year has been a surreal journey from diagnosis, through chemotherapy to surgery and my brain is still trying to compute the ride. I’ve lost 6 months of my life and it will probably be another 6 months before my life returns to some kind of normality. I feel a massive weight has been lifted since having the cancer removed, however the euphoria I’ve felt since the operation has turned into quiet relief as I know it could have been so much worse.

Having cancer is the worst thing that’s ever happened to me and although not something I wish to repeat, it’s definitely been memorable and almost certainly life changing. Staring death in the face brings everything back to zero and gives you a new appreciation for life. It’s strengthened family ties, reinforced existing friendships and encouraged new ones to flourish. I joke about it, but cancer really does bring people together.

http://www.davidshrigley.com

Anyway, enough sentimentality I just want to say a BIG THANKYOU to everyone who has been there for me this year and to everyone who has taken the time to follow my blog. Here’s to a Cancer free Christmas…maybe there’s a song in that 😉 Merry Xmas everybody!!

Do the right thing

I’ve recently returned home after nearly a week in Ninewells hospital and I’ve realised that a trip to hospital is all about economics. There’s gain or loss with every visit. I came home with a new breast and a bit less padding on my right buttock.

In case you haven’t followed my previous posts I’ve been in hospital for a mastectomy with breast reconstruction. The procedure I’ve had is called an IGAP (Inferior Gluteal Artery Perforator) flap reconstruction. In simple terms they took a piece of my right buttock and inserted it where my right breast once was. It’s a bit like installing a new boiler, only with more pipework.

I am aware that I haven’t used the word mastectomy in earlier posts. For most, including myself, the word conjures up images of bald, breast-less women with big ugly scars. My worst fear was that I would become one of those women. Twenty years ago this would have been the case, however medical advances mean that I was able to have both my mastectomy and reconstruction at the same time.

http://www.davidshrigley.com

Committing myself to major surgery wasn’t a decision I took lightly, however the alternatives were dire: an early demise or delayed reconstruction. I opted for the safest solution in terms of both my health and sanity. The risks of such a long operation are huge, however I had the 98.4% success rate of the breast reconstruction team on my side. Perhaps that’s why I felt so calm when I arrived in hospital last Monday.

The operation

My first afternoon in hospital was filled with pre-op assessments and chats with various medical people. I met with the plastic surgeon Mr M who listened to my bottom – a new experience for me – and covered me in blue pen in preparation for the operation. He is one of a handful of surgeons in the UK able to do this type of reconstruction, so I feel exceptionally lucky to live in an area and indeed a country where it’s both available and free. Big up the NHS!

The period between Monday night and Wednesday morning is all a bit of a blur. They let me out for a ‘last supper’ with family on Monday evening and when I returned to the hospital, I was offered me a pre-med to help me sleep. It must have worked because I have very little recollection of what happened on the morning of the operation. All I can remember is walking to theatre with the anaesthetist and being given a ‘gin and tonic’. The rest is history.

I woke from surgery sometime on Tuesday evening but it’s all really hazy after that. I drifted in and out of sleep. I had a midnight feast of toast and coffee. The whole nursing team were incredible but the nurse who looked after me on the first two nights was especially lovely. She fed me water through a straw when I couldn’t sit up. She cooled me down when I was too hot. The continual observations and monitoring of my new breast didn’t bother me in the slightest. The nursing was world-class and they just made me feel like I was in a really safe place.

http://www.davidshrigley.com

I was bed-bound for most of Wednesday and Thursday, another new experience for me. I felt like a rat in a trap initially, however I soon became accustomed to the wires, needles and bags attached to me. Progress was steady over the course of the week. By Thursday I had taken my first baby-steps around the bed, by Friday I’d walked along the corridor and that same night the catheter and inflatable leg-socks were thankfully removed. My first catheter free trip to the bathroom was a big highlight of the week. Who’d have thought so much joy could be gained from a trip to the loo.

On Saturday, free of all my attachments, I enjoyed my first shower and ventured up to the hospital precinct, looking and feeling like I’d escaped from the asylum with my crew-cut, mismatched clothes and slippers.

The day after my operation I weirdly found myself listening to a discussion on Radio 4’s Women’s hour about breast cancer and reconstruction. It seems that breast reconstruction is a postcode lottery and many women are misinformed about their choices regarding surgery. I whinged in a previous post about my limited options for surgery, however these were due to my skinny frame and the radiotherapy I’m expected to have. Ninewells offers a multitude of possibilities when it comes to reconstruction (IGAP, DIEP,TRAM & LD flaps among others) and after listening to this programme I feel really fortunate to have been given the choices I was.

What many women don’t realise is that you can elect to go anywhere you want for surgery regardless of where you live. New guidelines released by BAPRAS (British Association of Plastic, Reconstructive and Aesthetic Surgeons) last week, aim to ensure that all breast cancer patients are well-informed about their choices regarding breast reconstruction and can expect to receive the best possible outcomes wherever they are treated (www.bapras.org.uk).

Post op

I was determined to look at my new breast from the start and I’d already seen it from my semi-reclined position, however it wasn’t until I showered on Saturday that I saw myself properly in the mirror. I was really happy with my old body and looking at my new self was quite a shock, so there were tears.

My new breast looks and feels strange although its early days. The scarring is minimal, as I’ve had a skin sparing mastectomy, so the only scar is around the nipple. Considering the limited amount of donor flesh available on my backside, the size and shape is really good. It will never be as good as the original but it’s a fine start.

Maggie’s really helped to prepare me for this as I think I would be in a complete state of shock if I hadn’t had the opportunity to see other women’s scars and to chat to them about the operation. My breast is still healing, so I just have to remind myself that this is just the start of the reconstruction process. Nipple reconstruction comes later, as will surgery to make my breasts more symmetrical: it’s a work in a progress.

http://www.davidshrigley.com

Before surgery I was just as concerned about my bottom as my breast. I expected there would be a huge indentation in my buttock and although there is a massive scar, the shark sized bite I imagined is nowhere to be seen. Mr M mentioned that they can improve the symmetry on my buttocks but I doubt this will be necessary.

My body is recovering incredibly well from surgery although I do have to take it easy, something that I’m not very good at. I have to keep my leg as straight as possible for the next few weeks, to allow my bottom heal, which means I have adopted a peculiar gait. According to mum this is somewhere between The Hunchback of Notre Dame and Mrs Overall. I can’t bend, which means mum has to help me to put on my shoes and socks. I’m nearly there with the full reversion to childhood.

Mrs Overall in Acorn Antiques – she’s the one in the pinny

My breast is actually less painful than my bottom but this is probably because our bottoms are slightly more functional than our breasts. I did have plans to make use of my good breast, or ‘My Left Tit’ as I like to call it, to write this post, as I didn’t know if I’d have full use of my arms. Thankfully it hasn’t come to that, however my left foot has been giving me a hand. I’ll be typing out my next post with my big toe before you know it.

This week has been a rollercoaster both physically and mentally, yet I feel surprisingly okay about it all. I’ve gained a breast, lost a bit of my right buttock and my arse is now quite literally staring me in the face. I’ve also acquired new addictions to white-toast and Game of Thrones. Of course the thing that has made the bad bits bearable is that I am now potentially cancer free, or at least very close.

Limmy & Cancer awareness wrist bands

Limmy (Scottish comedian) makes a really valid point here regarding fauxwareness and slacktivism,. This was made a few years ago so pre-dates the recent lancing of Mr Armstrong.

The Force is strong with this one

Today I had some amazing news. I got the call to say that the cancer has not spread to my lymph nodes. I am soooooo happy!!

I hate security guards but this one has gone beyond the call of duty. Mr sentinel lymph node has earned his stripes, been awarded the VC, he’s top-trumped the cancer.

As my wise friend Lou said ‘The Force is Strong with you!’. And she’s right, I am winning 🙂

The BC blues

On Tuesday I had the first of two operations I’m having this month. I survived my first general anaesthetic and aside from a little tiredness I feel fine. I have a rather fetching blue boob or a blue-tit as my mate Jane delightfully pointed out – those cute little birds will never look the same again. There are a few other lasting reminders of the blue dye they injected me with, but I’ll leave that to your imagination. Suffice to say I got a shock when I went to the loo.

The procedure I had on Tuesday was a sentinel node biopsy. This operation was a pre-emptive strike. If the cancer is metastasising (spreading), the sentinel node is the first port of call. If the sentinel node is clean, it is assumed that the cancer has not spread elsewhere. Here’s hoping I get the all-clear, otherwise my big operation will be even bigger. My last scan showed that the cancer hasn’t spread to my lymph nodes, however only the biopsy will confirm this.

I saw this operation as good preparation for the big one, so I was looking forward to it in a weird kind of way. I had nearly a four-hour wait before my operation and a trip to nuclear medicine helped pass the time. Here, they injected me with a radioactive isotope to make my lymph nodes visible during the operation. I was slightly alarmed that the injection came in a box marked “Hazardous –Radioactive” and it’s easy to get blasé about these things: chemo one day, radioactive injections the next, I can take it. With any luck it will give me some Godzilla like super-powers.

On my return from nuclear medicine the nurse asked me to provide a urine sample and said that a man in a cowboy hat would come and collect it. My over-active imagination didn’t think to question this, so I went to the bathroom, removed the hat shaped bowl from the toilet and wondered when the cowboy would appear. I found out later that what she’d said was ‘pee into the cowboy hat’.

Rooster Cogburn – suprisingly he doesn’t collect urine samples at my local hospital

I’ve never had a general anaesthetic before and was keen to tick this off my ‘to-do’ list. My worst fear was becoming conscious during the operation although this is so rare, I’d be freakishly unlucky for it to happen to me. I was scared but I actually enjoyed that moment of bliss before being completely knocked out. It’s the most peaceful I’ve felt since my diagnosis 5 months ago.

It took a long time for me to come around after the operation and I didn’t want to wake up. I enjoyed drifting in and out of consciousness. All I can remember is the nurses trying to wake me and the surgeon asking “how are you Manchester girl?”. The thought of food and coffee eventually made me wake from my slumber. I hadn’t eaten for nearly 24 hours so I was ravenous.

My friend Jenny had bought us tickets to see Ross Noble that evening. I was unsure about going in my post-operative state but thought some comedy would do me good. The hospital advised me that my excursion could be curtailed by a Smurf like hue, but luckily I was just a bit grey-blue, maybe even a little gravy-blue.

I could have ended up looking like this!

Mr Noble provided us with nearly three hours of mental meandering so he was great value. Three hours is a long time for most people and I was pretty tired after my operation so when he left the stage to come back on for a Q & A session we called it a night.

Nearly a week has passed since my operation and my scar is healing nicely. It isn’t too big and it’s in my armpit, so in the hierarchy of scars, it’s pretty low down. Bizarrely the stitches are on the inside.

I’ve taken another small step towards the end of my treatment & with operation lymph node under my belt I’ve decided I’m taking a cancer-break. A cancer-break is like a career break with extras. It’s great, you get time off work, a free wig and lots of drugs, everyone should take one. Cancer has completely taken over my life for the past five months so I’m taking a break from all things medical. I have a few weeks grace before the big op and I’d like to regain some normality in my life before round two begins.

Tig Notaro

This is one of the best stand up routines I’ve heard in a long time – Tig Notaro. Cancer humour, it’s dark but incredibly funny:

https://buy.louisck.net/purchase/tig-notaro-live

Sorry I had to remove the original link as someone pointed out it was linked to my account. I’m sure none of you would abuse it & much as I would love you all to have free comedy on my behalf, if you click on the link above it’s just $5 to buy & worth every cent!

Under the knife

I finished chemo nearly two weeks ago so I’m slowly getting back to health and moving on to the next stage of my treatment. It feels great to be finished chemo and be free of my Picc Line, however the next stage is full of it’s own little joys as I discovered on Monday morning, when I had my first appointment with the plastic surgeon.

After sizing up my breasts & my backside & drawing a rather comical sketch of my breasts, the surgeon gave me the low-down on surgery. I was given two options. The first is an implant combined with tissue/muscle flap from my back (Lattisimus Dorsi Flap). Option two is using tissue from elsewhere on my body. There wasn’t much fat on me before I started treatment, however the chemo induced nausea, combined with the 5:2 diet means that there’s now very little to spare. Apparently you can be too thin.

http://www.davidshrigley.com

After ruling out my stomach as a donor site, he said he’d struggle to harvest enough tissue from my bottom, or at least not enough to make my breasts symmetrical. Unfortunately an implant isn’t a viable option, because the radiotherapy I’ll be having post-surgery will damage it. This leaves me with one not very satisfactory solution to the problem that is the cancer in my right breast.

I asked the surgeon what he thought was the best solution and he said he can’t make that decision, it’s up to me. I was left to go away and think about my one option and come back the following week to discuss it further with the specialist-nurse.

Mother and I were fairly traumatised after leaving the hospital on Monday morning, but luckily Maggie’s came to the rescue. I had a massage booked and I left mum in the care of the lovely folk at Maggie’s. After my massage, mum introduced me to a woman who’d recently had her operation and she was more than happy to show us her scars. All I can say is they weren’t all that bad. She had one massive scar across the crease line of her right buttock, but there wasn’t a big gaping dent as I’d imagined there’d be. Her breast was nipple-less (they do this later) but actually looked ok. The only scar was around the nipple. This was another of those serendipitous meetings I seem to keep having and it went a little way towards relieving the worries I have about surgery.

We went back on Friday and spent an hour chatting to the nurse about what will happen. The nurse talked us through everything from morphine to the moon-boots I’ll be wearing to stop DVT. It’s a long operation. I’ll be in theatre for 9-10 hours and for the first 48 hours, my breast will be continually monitored to check the new breast tissue is functioning. It could go wrong, although this is unlikely. They have a failure rate of 1.6%, so I hope I’ll be in the other 98.4%. It’s hard not to worry, but what choice do I have.

I’m going for the bum transplant because the only other option is to delay reconstruction, which I don’t want to do. Depending on the result of this operation, it’s likely that I’ll need further surgery at a later date. If they can’t harvest enough tissue from my buttock, they’ll either increase my new breast or reduce my healthy breast to match. I’m told that plastic surgeons are perfectionists so although it won’t be immediate, I will have an even pair eventually.

Mentally I’m not sure how you prepare for a big operation like this. I’ve been told my stay in hospital will be an emotional one. I’m losing a breast so I expect there will be tears. I’m happy with my body just the way it is, but it’s never going to look the same again and that’s hard to accept.

I’m having a minor operation next week to remove my sentinel lymph node. I’ve never been under the knife so I think this will be good preparation for the big op. This is likely to happen mid-November and I’m just waiting for the date to be confirmed.

At this point it’s hard to see the end of the road. I was hoping to have all my treatment finished by xmas but it looks like it will carry on into the New Year. I’ll be having radiotherapy after xmas then possibly more surgery after that.

http://www.davidshrigley.com

I have roughly 3 weeks of freedom before my big operation so I want to squeeze in some fun before that. I also have hair growth to look forward to. I need to stop looking at my head but there’s definitely been a bit of growth. For the first time in my life I’m rather excited about having a five o’clock shadow on my head. I’m curious to know what colour it will be as I’m told it could come back a completely different colour and texture. Let’s hope I get poker straight blonde highlights. I haven’t had to shave my legs for 4 months, a small blessing, so I also have that to look forward to. Bring on the stubble.

David Shrigley – How are you feeling?

I love this piece is from David Shrigley‘s exhibition at the Cornerhouse in Manchester. He finds humour in the darkest places. It’s on until January – go see it!

http://www.cornerhouse.org/art/art-exhibitions/david-shrigley-how-are-you-feeling

Thank FEC it’s over

Today I am celebrating. 127 days since my diagnosis and 105 days since starting chemotherapy I’ve had my sixth and final dose of the delightful FEC. I also had my trusty friend, the Picc line, whipped out today so I’ve got my left arm back too.

I bid an emotional farewell to the Oncology unit today. I won’t miss the weekly trips, the smell of the ward – that hospital smell makes me want to barf now –  and being surrounded by illness, however I’ll really miss the banter with the nurses and the psychological security-blanket they have provided me with over the last few months. They’re a truly lovely bunch.

The after effects of chemo mean my celebration is very low-key. More of a “thank f**k that’s over, get cosy on the couch and stretch my left arm as far as I want” kind of celebration, than going down the pub.

Unicone: http://www.designbyday.co.uk

I’m happy. From today there’ll be no more one-armed baths or wooden-arm and soon I’ll be waving goodbye to nausea, fatigue, ice-cream headaches, brain-fog and chemo-glow. I’ve got my left arm back and in a few weeks time I should have some hair. My parents are treating me to a wee break and I’m hoping to squeeze in a Manchester catch up before my big op. It will be so good to feel normal again. Thank FEC this part is over.