Zap zap zap
Ooh it’s Saturday night, it must be time for a blog. I don’t know why but I seem to associate Saturdays with writing at the moment. Perhaps because Andy has been out gigging the last two Saturdays, maybe it’s easier to write when he’s not here. The last few weeks have been bizarre and I think sometimes people forget that it’s just as hard, if not harder, for him as he can do nothing but stand back and watch as all this chaos unfolds around us. Anyway. Right, so the staples came out this week, the wound is healing quickly and neatly and I’ve made a really good recovery this week. I saw Naomi and Mr Kitchen on Monday and the plan is to start 10 sessions of radiotherapy to the whole brain on Monday. It’s quick, painless and I’ve been reassured that they won’t be zapping me to the point of making me a dribbling wreck. Side-effects I hope will be minimal and short-lived and, according to the brainy people, there’s every chance this will sort it for good and I never have another problem in my head again. Turns out they found three, not two, but anyway it doesn’t really matter how many, just that they are not currently in a worrying area. If they can be zapped – pow pow! – to smithereens, excellent. If they stay the same size and no more have popped up, also a good result. So onwards, starting Monday for two weeks. I’m happy to have a plan, I’m hoping for and expecting a good result and, while I don’t particularly want to do it, there is no choice on this one so I’m manning up and preparing to get on with it. Let’s hope I’m not sitting here next Saturday going “urrrrrgggggghhhhhh, it’s horrible, I feel really sick.” I keep thinking back to Ellie, I think we became friends around the time she was having hers and I can’t say I ever remember her saying it was overly difficult and Tom’s view is that it was definitely one of the best things she did. So, while Ellie may not be here and God knows she’s still missed, every day, she still has such an influence on how I cope with all this. Ellie knuckled down and got on with having her brain fried, all with that gorgeous smile, thoughtful nature and wicked sense of fun, so I will do it too.
Where Ellie and I differed was that she never got to the point I am at now. She was never told by the oncologist she loved, trusted and respected that there was really only one option left, not even a great one, and given the choice about what she wanted to do (not that I am aware of anyway, she didn’t share it with me if she was). I wonder if, had she been given the statistics about the drug I’ve been offered, she would be thinking about turning it down. The drug she was on when she died was one I had been on previously, the only one that had ever really made a big difference for any length of time. In fact, it was well over a year ago that I was on that drug and in all the months that have passed and all the drugs I’ve tried in that time (three), I have not had anything except bad news – nothing has worked. I had just assumed with Ellie, that that drug would have helped her as it did me and obviously she did too otherwise she wouldn’t have put herself through yet more chemo, not unless she really believed it could make a difference.
As I’ve been steadily getting better this week, I’ve done a fair amount of wandering round Walthamstow, drinking lots of tea, people-watching in cafes. Remembering that, whilst the focus has been so intensely and frighteningly on my brain this last couple of weeks, there is still a decision to be made. That decision may have been delayed due to recent events but it’s not going away – do I have this chemo, ANY chemo even? This week I’ve really had time to think about life, what it means, death, what that means (every time I say or write ‘life’, I get that Des’ree song in my head; incidentally if you’re on Twitter, follow @desree_life – highly funny). I haven’t come to any conclusions yet but I do know that I am considering questions I never thought I’d have to at my age, or ever really, who does? What does my life mean to me, what’s important? How much do you let hope run roughshod over reality? How can you turn fear into something positive or at least dull the pain of it down a bit? How can you explain things to people who aren’t ready to hear what you might have to say, refuse point blank to entertain it because they are so utterly devastated by the prospect of what’s to come? How do you, as the person who is going to be mourned one day, carry that knowledge and the absolute agony that comes with it? Without a doubt, the hardest thing about trying to come to terms with what could be your own relatively imminent death (I’m not saying definitely, pipe down ‘think positive’ brigade at the back) is knowing that the people you love most in the world, the people you would protect to your death if you could, the people you want to be happy and to never know a moment of pain are probably going to be pretty upset for a while, to say the least? How can you ever come to terms with that? The only answer I have at that moment is: you don’t, it’s bloody horrible. I’m not sure you ever can.
Most of my life I’ve been afraid of something and it’s crippled me occasionally and led me to some poor decisions that have brought bad consequences. For quite some time now I’ve been sure that the only way out of fear (of anything – cancer, money worries, spiders) is to face it and that’s not to say I’ve cracked it, my God, far from it. Last week I was, as you’ll know if you read my last blog post, in a pit of absolute despair and for a short while I thought “I’m not going to come back from this, I feel so broken and miserable and frightened.” And then by Sunday night, something just clicked and I then realised I had no other option than to try and claw my way out of that pit. Of course I’m scared of having my brain fried but my general rule is that if I’m scared of something that is inevitable, even if it’s an awful prospect, well then I’m doubly screwed aren’t I? It’s going to happen anyway, I’m just making it worse for myself by adding a whole lot of stress if I then try and leg it. I have a good chance of a good result with this treatment, it’s a no-brainer. But when it comes to having more chemo, I have to ask myself for a brutally honest answer as to the reasons why I would be doing it. Would it be as a way of running away from the inevitable, to try and delay it as it’s too horrible to contemplate? Is my definition of how worthwhile my life is based on its duration? And if not, then how do I measure it? Put starkly, when do you decide you’ve had enough – not that you can’t do any more, but that you won’t because something else is too important. But what if you never come to the ‘right’ conclusion until it’s too late?
It’s also very, very difficult to discuss this with people – as a society, we are still so afraid of death. No-one wants to talk about it, it’s like they’re afraid they’ll catch it. Well bad news for you friends, you’ve already got it. You were born with it. Same as me, I’m just more aware of my death as I’ve had notice about it, plenty of notice too. This week, a friend – @iswhiz -who also has secondaries wrote a great blog piece about the complexities of having to constantly explain, very gently for fear of upsetting people, that yes you may look well and yes you may live for a long time with the right treatment, but that ultimately no you’re not going to be ok and that yes, you will die of this one day (probably. Unless the famous bus comes first). I understand, I really do, that this is not something a lot of people feel comfortable with, and I am absolutely respectful of that. But what I am becoming increasingly pissed off with is when all people can say is “weeeeeeeeeeell, you never know do you” and then the famous, classic cancer line: “YOU’VE JUST GOT TO STAY POSITIVE, HAVEN’T YOU?” The thing is, if I don’t die of cancer, I’ll die of something else one day, and so will you, so what, are we all supposed to go round blindly telling each other to “be positive” every time it looks like one of us might snuff it? Really? Bloody hell, how miserable. No thanks. I don’t want death to be that powerful that I spend all my time and energy and avoiding it. Not that I welcome the prospect of it, I don’t right now, although I certainly wouldn’t want to live forever. Or into my 80s or 90s
particularly, I couldn’t afford it if my current spending is anything to go by. I’m still young and doing pretty well, all things considered; I’ve just got married; I like my job; I have great friends and have recently found new interests, formulated some new ideas and views. I feel like I’m growing in lots of ways, so of course in an ideal world I wouldn’t choose to be where I am. If there was a potential miracle cure on the table, even one that came with a tiny 1 per cent chance of effectiveness, then I would do it. In a heartbeat. But there isn’t, not that I’m aware of. Secondary breast cancer cannot be cured. It can be managed for years and years and I would have been more than happy with years and years. But if I go on this last drug, it will give me months, at best. What price for those extra months, after 8 different types of chemo, two lots of brain surgery and a brain-zapping? My body is getting tired now, even by my elephant standards. I want good months. Great months. Not months of feeling shit. I crave peace, and I have to think very carefully about what will bring me the most peace.
It sounds like I have made a decision – I haven’t. I’ve thought lots and lots, that’s all for now. This is not a decision to be made lightly! There is a point you have to get to called acceptance and I’m not sure I’m quite there yet. In the meantime, I’ve got me some head frying to do and I’m also picking up two little furry bundles of fluff this week, kittens called Moomin and Fleur who will be the newest additions to the Marvell household, so no decisions needed just yet. I’ll be too busy cleaning up kitten poo probably.