I’m still floating around loving being a wife although yesterday it was back to reality with my latest scan results. A recap: I’ve done three cycles of Eribulin, the relatively new drug paid for by the Cancer Drugs Fund, the one that everyone seemed to have high hopes for. I had suspected it hadn’t worked and unfortunately on this occasion it wasn’t me having a complete freak-out which would prove to be unfounded (that’s happened enough times in the past) and I was right. It hasn’t worked. But it wasn’t as bad as I thought. I was REALLY scared about this one, I know the path ahead of me isn’t laced with heaps of really good options any more and on paper, I’m running out of drugs to try. However, whereas I had almost convinced myself it was now in my bones, maybe even plonking itself in my liver too for good measure, both of those were clear. I also had my first brain MRI last week and that showed ‘no sign of active brain disease’, meaning the surgery was – up to now – a success. My clever little noggin has healed nicely and I’m not riddled with cancer in my head which would have been a bit of a disaster. The things in my lungs have got worse, not horrendously so, but enough for Alison to pull the plug on Eribulin and come up with a new plan. The weird nagging tight feeling in my side could be one of the tumours pressing on a rib or it could equally be the build-up of scar tissue from the mastectomy two years ago. I sometimes forget what a huge op that was – having your whole boob removed, and a massive muscle in your back twisted, cut and pulled through a slit under your armpit to form the basis of a ‘new’ boob is not to be sniffed at. Anyway it doesn’t really matter what it is, just that no-one seems too concerned about it.
A few weeks ago, I went back to see the boffins at the Sarah Cannon Research Institute in Harley St, Tobi and Mathilde. SCRI run early stage trials of potential new drugs, Ellie and were both tested for a trial they ran at the start of this year – Ellie’s cancer had the right profile, mine didn’t although sadly she was eventually excluded from it for other reasons. The longer I’ve lived with cancer, the more drugs I’ve tried, the more I come to understand that, particularly for triple negative cancer, chemotherapy is pretty hit and miss – like chucking spaghetti at the wall and seeing how much sticks. The future of cancer treatment, regardless of the type, is in targeted therapies – where they look in detail at your own specific cancer, try and work out where the fault is, and come up with treatment that targets that fault specifically. The problem with cancer is that it’s so complicated, and clever. And there is a huge amount the medical profession doesn’t know about it. Even the term ‘breast cancer’ is a bit of a misnomer as it’s not one disease. There could literally be hundreds of variations and no two people’s disease will be the same. Look at Ellie and me – we may both have been triple negative but we responded differently to the same drugs. What worked for me for a while didn’t for her and vice versa. She got on the FGFR trial in January, I didn’t. Triple negative is basically an umbrella term for a form of breast cancer that, so far, they haven’t cracked. All they know about triple negative really is what it DOESN’T respond to (hormones), not what it does. So it really is a case of throw some chemo at it and hope for the best. Hence I’m now looking at drug #8.
Anyway back to Sarah Cannon – there is a drug they are looking at which targets the loss of a specific protein. It’s all quite complicated but they are exploring whether I am missing this protein – in some cases, if you haven’t got this protein, something else kicks in and makes cancer cells grow out of control. That’s about as far as I can follow, these people are SERIOUSLY clever and as much as lovely Matilde drew diagrams and tried to explain it in simple person terms I got to the stage where all I could do was nod and sign the papers to allow them to run more tests on my tissue sample. The initial test they ran gave me a score of 3. Ideally I would have been a 0 or 1 in which case an almost perfect match, but the scale goes up to 7 – anything above a 4 would have ruled me out completely so there’s still a chance. I realise this is all quite detailed but the point I’m trying to make is that this is the kind of analysis and development that’s going on in the cancer research world. And I, for one, feel very fortunate to be very firmly on the radar of these incredibly clever people, for whom nothing is too much trouble and who are dedicating their lives and careers towards trying to understand how cancer works. Will my own particular cancer code ever be cracked, will they find out exactly what’s gone wrong in my cells? I don’t know but, thanks to Alison and now the likes of Tobi and Mathilde, I’m at least one step closer to finding the right fitting shoe (Ellie once described in her blog how someone told her chemotherapy was like finding the right shoe, you have to keep trying them on until you find the right one for you – bit like Cinderella I suppose and look what her reward was once she found her shoe).
Back to yesterday – Alison’s preferred option is to see whether this trial is a go-er, if it’s not, there are still some things to try although thanks to the ‘law of diminishing returns’ the chances of anything working get slimmer and slimmer the more chemo you’ve been on. Her priority now is to try drugs that aren’t going to make me really ill, and that have at least a chance of working, however small. I’ve gone past the stage where she will throw the really hardcore stuff at me – and to be fair, I think I’ve done all the really hard ones already – she is now having to find the best ways to keep me well as long as possible.
I’ve thought about Ellie lots recently, well since she died really. Especially now. At my lowest points – and there have been many over the past couple of months – I sometimes think “I can’t, I can’t do this any more, I can’t face any more chemo. How many more times can I sit in this chair and be told, yet again, that something hasn’t worked? Just let me go and I’ll take whatever the consequences are.” Then I ask myself ‘what would Ellie do?’, I re-read her blog and I’m reminded that of course she would have done anything to gain more precious time with Tom. She genuinely believed that her perfectly-fitting shoe could just be round the corner, even when she too had her can’t-do-this-any-more moments. And she was right. While there is still a slim chance, there is still A CHANCE. I know the odds are against me now but I also know I’m still here. I’ve been married for just 6 days but already my marriage has become the focal point of my life. Every time I catch a glimpse of Andy’s wedding ring and see my new name on emails, something kicks in and says DO NOT EVEN THINK ABOUT GIVING IN. My head might want to but my heart is stronger now and it just won’t let me.
I’ve now got a couple of weeks where the best brains in town figure out where we go next, and their advice? Go and have a great couple of weeks and don’t think about, let us do our jobs. I’ve got me a wedding bash to plan.