Archive for the ‘Round IV’ Category

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.

Scrabble is a great distraction from chemo

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.

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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 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’.

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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, ImmunotherapyOzone 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” 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’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.

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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.