Posts Tagged ‘killerkath’

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

 

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

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

 

 

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.

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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.

 

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.

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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.

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.