The Battle and The Race

On seeing a friend's sponsorship ask for Cancer Research's 'Race for Life', it dawned on me why I really hate that term, as well as "battling cancer".

It implies that the brave, the fit, the worthy, survive cancer. That the people who die of cancer didn't run fast or far enough, didn't fight hard enough, were weak and unworthy of their lives. They lost the battle against it, the race for life, and if only they'd have tried harder and fought better, they would have won.

I'm sorry but it just doesn't work that way. There is no way of battling or racing this thing. The only control I have had is going to the doctor as soon as I found it (check) and taking the treatments that have been recommended (also check). Along the way, I was repeatedly assured that it probably hasn't spread, that we caught it quite early, that we were "going for gold" by doing my groin dissection. So far, in 'fighting' this, I've gone through two general anaesthetic operations, an icecream scoop of calf removed, the loss of eighteen lymph nodes, so many local anaesthetic biopsies that I've lost count, two minor infections, one major infection that very nearly killed me, loss of all sensation in my thigh, permanent nerve damage, the resulting pain, and enough tears to fill a small pond.

Well, guess what. It still came back. Despite all the operations, despite my vigilance, despite the countless hours and the gallons of petrol taking myself to appointments, it still came back twice and it will likely come back again.


I've been counselled along the way by well-meaning people to drink lots of orange juice, to try herbal supplements, to eat more tumeric. I am the first person to admit that my diet isn't the best it could be. Although I'm vegan, I could still eat a lot more fruit and veg, and fewer doughnuts. I did used to exercise five times a week, but since my groin dissection, I have shooting pains and burning/stabbing sensations inside my thigh. Running exacerbates this so my training shoes have gone unworn for two years.

Would a better diet and more exercise kill the cancer cells? That's the only thing I can actively do to 'fight' it. How would that beat a genetic mutation and molecular defect?

Whatever happens, whether I get better, stay the same or die from this, just please don't refer to it as my 'battle'. There is no real fighting to be done, no race to win. I am not a brave cancer warrior, just a woman doing my best and following medical advice. I really hope I survive, but if I die, please don't say I "lost my fight". Say instead that I lived and tried the best I could, the same as we all do.

The grim inevitable.

Even though the last lesion was tiny, and the lovely Dr Stewart said they had to go 19 slices in before they found any abnormal cells, they did indeed find them and they were cancerous. So I'm two for two now in my spotting of recurrences. Go me.

I had already decided to be proactive and ask for regular blood tests to check LDH level from hereon in, but when Dr S phoned me last week to tell me my LDH level was okay, she also dropped a bombshell: the Whiston MDT discussed me and decided to test my melanoma for the BRAF mutation, a common genetic mutation found in half of melanomas that causes the cells to divide uncontrollably. Dr S wasn't 100% sure why they want to test me but she speculated two reasons, neither of which make me want to celebrate and both related to a new 'wonder drug' called vemurafenib - vem for short. Vem is a BRAF inhibitor, a type of biological therapy which slows or stops melanoma growth for an average of six months. It looks like a miracle drug because it melts the tumours away very quickly indeed. It can take just days to get rid of a tumour and it's very exciting news in the world of melanoma treatment which, until very recently, has been pretty static.

Possible reason one: to check whether I'm BRAF positive or negative for future reference. If I'm positive, I would be suitable for vem. At the moment it's only given to stage 4 patients. Putting two and two together, then, they suspect I will become stage 4 and they want to be ready with the vem. That's really scary.

Possible reason two: to check whether I'm BRAF positive or negative for clinical trial purposes. At the moment, vem is only routinely given to people with stage 4 melanoma in an attempt to slow down metastatic spread and prolong a good quality of life. The stage 3 trial is aiming to see whether vem given to stage 3 patients can stop the spread of cancer. That's great on paper but there are two sticking points for me.

The first is that vem is only effective for an average of six months before the tumour becomes resistant and begins to find a way to grow again. Once that happens, no more vem for you because it's ineffective (although research is currently indicating that having a 'holiday' from the drug can kickstart it working again).

The second sticking point are the side effects, which commonly include joint and muscle pain, fatigue, hair thinning or loss, photosensitivity and skin problems such as blistering, rashes and painful thickening. Aside from all that, I don't feel that two recurrences is enough to see a pattern. If I have another in a few months then I would err towards constant and aggressive recurrences but two is not a large enough sample. I may take the vem and not have another tumour pop up for a year, but that may happen regardless.

I will go to the appointment and listen to what is said so I can make a decision with all the information in front of me (if indeed I am eligible for a trial in the first place) but this moment in time is not ideal. My job is very busy and competitive - there are a million people waiting for me to be unable to do it so they can jump into my shoes. I need to be on the ball and at the top of my game. Being a tired, balding, blistery person would not help me. I want to take part in a clinical trial to help science and to help myself but I don't know that this is it. 

A very miserable feedback loop

I went through a weird phase about two weeks ago of being resolutely convinced that I was going to die. And by thinking it, I wondered if I was somehow killing myself by making my body turn that thought into an action. And then that convinced me even further that I was going to die, ad infinatum until I was nothing more than a snivelling, despondent mess. I ate a lot of junk food that week. Thankfully, I managed to snap myself out of it somehow but it was a dark place to be. Now I'm back to believing the statistics, which are 50/50. Well, kind of but not really. Let me clarify. I found out something interesting the other day. There was a public meeting about melanoma held locally, and attended by two very eminent melanoma specialists, so I popped along after work. I didn't realise, but my survival is already written into the melanoma. Whether it spreads to my organs, whether it can be fought, whether it is aggressive - all of that is pre-determined by the melanoma's genetic fingerprint. So although 50% of people at my stage die, my outlook is pre-determined. I just don't know what it is yet.

The nightmares have started again too. Last week I had four nights in a row where I dreamt I died. 

Tomorrow I find out whether the latest biopsy shows cancer. I've already resigned myself to the fact it will.