tiltingheads

Cancer and other stuff

Archive for the month “June, 2012”

I’m a size 6 and I don’t do heels very well

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.

Advertisements

Getting spliced

I’m not sure how many people read this blog via Facebook or Twitter – the majority I would have thought – so you probably know we got married on Friday in Gretna Green. We told our family and some of our friends in advance so we didn’t exactly do a runner in the history of what Gretna Green is famous for, with our parents hot on our heels, but it was pretty romantic in a way neither of us expected it would be. Having done the legal bit this way, we now realise it was totally perfect for us and we can get on with planning September as normal – with some of the pressure off.

Before we got engaged, we talked about how we’d like to just go off somewhere quietly on our own. Then we get engaged and immediately I morph into some kind of wild Bridezilla (I know, I know, I promised this would never happen but it’s really hard not to!). The venue gets booked, expensive dresses get ordered, lists are drawn up and before you know it, we’re planning to get wed in front of 120-odd people and discussing canapés with the caterer. Wedding fever hits, everyone’s happy, including us.

Then Ellie dies, two weeks before the wedding she and Tom had planned so beautifully for the best part of a year, the wedding she was so excited about, and for a couple of weeks, nothing makes sense any more. Neither of us can face wedding talk, every time I look at my to-do list, I just feel sick and weepy, with what I now recognise as some kind of survivor’s guilt mixed with grief for the beautiful girl I came to identify so much with in a short space of time. Every time I thought “wedding” I just hated everything about it, which isn’t right. I just couldn’t believe life would be that cruel, how could that have possibly happened? Why? What follows is a period of deep reflection and analysis. What if that happened to us? What IS it we actually want? What’s important to us? And we quickly remember that all we really want is to be married, so why are we waiting and making a big spectacle about something which – for us – is a private, personal thing involving just the two of us?

So it’s off to Gretna Green. You have to give a minimum 15 days notice of your intention to marry up there then you can tie the knot any time after that. We arranged all this at the end of May, let a few people in on the secret and started counting down the days from there. Every day, I’d warn Andy to take care crossing the road, I stayed off my bike for a bit, I was almost manic with fear that something would happen to either of us.

Finally the clock-watching is over and Friday rolls around. Between us we pack a rucksack and dart off to Euston to catch the train. We arrive at Carlisle later than planned, miss our connection so spend a couple of giddy hours in the pub waiting for the next train. We finally get to Gretna Green with an hour to spare. Dump our bag, quick change, put some slap on and head up to the old blacksmith’s shop, where runaways have been married over the anvil since 1754. At 5pm, with tears in our eyes and lumps in our throats,
with just two random strangers who happened to be wandering round the gift shop as witnesses, we vow to love and care for each other, for richer for poorer, in sickness and in health, until death us do part. And immediately the pressure we’ve almost been suffocating under disappears and we stand in front of each other as husband and wife. We did it, we made it.

Under ‘normal’ circumstances, it maybe wouldn’t have been like this. But our relationship has been built and nurtured
under very abnormal circumstances right from the start. From our very first date we’ve known this and we’ve made it work in spite of this. We made it clear that we wanted to do this alone and our family and friends respected our wishes and let us slip off quietly. ‘Normal’ couples don’t have to live with what we do and we now recognise that making those vows in front of a church full
of people wouldn’t have been the right thing for us. It was too personal to share. That’s not to say we don’t love our families and friends to bits – we do – but this was absolutely the right thing to do. We hope you understand that. As for Ellie, I know she would have approved.

So now we’re back to real life and finally we can start looking forward to September instead of dreading it, and panicking that one of us wouldn’t make it to that date (Andy is not immortal either, he cycles enough for me to worry he’ll get squished by a lorry). We just couldn’t live like that for the next three months. We have enough to deal with without that. We’re REALLY excited about September, when our marriage will be celebrated and blessed in front of all our family and friends. The party will be immense, and the whole day becomes one big celebration of love for everyone involved. It’s not *just* about us, it’s about everyone there too. We still feel September will be “the wedding” – the dress, the booze, the music, the “isn’t it amazing being in love?”, it’s just the legal marriage has already happened. I said in my last blog how vital it is to make the most of every second and not have any regrets and for once I went with my own gut instinct and didn’t bother trying to please everyone else. There is absolutely nothing I regret about Friday, it was magical in every way and to become Mrs Marvell is the best thing that’s ever happened to me.

So we will see you all in September for the most beautiful day ever when undoubtedly I will spend most of it in tears, happy ones. And perhaps a bit drunk on the very good wine Andy is flitting off to France to buy this weekend. The food has been chosen, the canapés are in development, our bands are practising, the playlists are being drawn up. We can’t wait to see you and look forward to sharing a toast to love, happiness and of course, to Ellie & Tom.

Lots of love Mr & Mrs Marvell (it will NEVER get boring writing that) xx

20120708-075939.jpg

Post Navigation