tiltingheads

Cancer and other stuff

Archive for the month “November, 2012”

Sunbed

I’ve wanted to write a blog a few times over the last few weeks and in hindsight, I’m glad I didn’t as I’m pretty sure I would be reading it back now in horror, not recognising the person who wrote it. The fact is the past few weeks have been completely surreal, it feels like so much has happened – I’ve experienced every emotion under the sun it seems and there have been many, many times where I couldn’t even speak. A rare thing indeed as those who know me will testify. I have no real plan for where this is going so I’ll just write and let’s see what happens, shall we?

So. Radiotherapy is awful. Really. (NB to anyone who may be reading and facing the same thing, it’s do-able. It must be as I’m sitting here now and I’d refer you back to Ellie’s blog of 12 November last year for verification of this. I just had a bad time of it but I put that down to the fact I’d only had pretty horrible brain surgery a week or so before). I’ve only just realised that my radiotherapy is almost a year to the day of Ellie’s. I don’t know what this means, perhaps it just reminds me of how much of a connection we had and how important she was to me – how it really felt like only she could ever, ever know what this was like, though I didn’t know her for very long.

I went in every day, to the same department I had radiotherapy to my breast back in 2009. On my first day, they took me into a room to explain exactly what was going to be happening every day for two weeks and it was only after a few minutes of deja vu that I realised it was the exact same room they took me and my friend Lisa into in 2010 when they told us my cancer had spread to my lungs. So a great start to the week. First blast on Monday, by Wednesday I’m sobbing on the registrar saying I can’t do it, please can I delay it or at least be sedated in some way every time I have to be clamped to the table in that sodding mask? The NHS has delivered for me on numerous occasions over the last three years but I have never known kindness like I was shown by all the radiotherapy staff at UCH (if by some weird coincidence anyone knows anyone there, please do forward this onto them). Every day, they’d see me come shuffling and quivering down the corridor, pale and clammy with fear (it’s the mask! It’s horrible) and every day, they would put a walkie talkie by my ear and talk to me constantly, explaining what the machine is doing now, counting down the seconds, then rushing in and freeing me with massive smiles and “well done! You’re very brave and you’ve only got 8/7/6/5/etc to go now!” I mean, THAT is the true spirit of the NHS: people who care. People who understand this is frightening and go above and beyond their duty to make it as easy for you as possible. By the time I left my final session on the Friday, I was almost sad to leave and had a little cry on the way home, largely as I was so thankful I had had them there that whole two weeks.

During that two weeks, I was sick. A lot. With no real warning or pattern (although tended to be in the mornings). My appetite went, I could only stomach the blandest of foods – plain noodles, mash, buckets of Lucozade. I was so scared of throwing up, I developed this weird food phobia where I just couldn’t face anything. Energy-wise, how I managed to get to the hospital every day is beyond me. Every day involved sitting in my pyjamas watching films until the time came to get dressed and get on the tube. Thankfully the kittens arrived just as I started so I had loads of time for cuddles and playing with them, they’ve been my salvation so far. What you have to remember is that really, this is all new for me. I’ve been knocked around on chemo but it’s been temporary and I’ve bounced back relatively quickly. For two solid weeks, I was virtually housebound, exhausted and tired and wondering ‘Is this it? Is this what cancer is going to feel like now?’ For the last few years, I’ve largely felt ok from the disease itself and my God, after the last two weeks I now know how fortunate I’ve been in that respect. I’m not in any pain, I can get around, I can keep my life going to a substantial degree. Having your head cut open for the second time in a year, then fried shortly after – all I can say is even my limits have been tested and there have been split seconds where I’ve really thought ‘this IS it, I’m going to die’. Yet here I am, writing a blog.

My biggest fear was that the treatment was going take something of ‘me’ away. Having been reassured that, clinically, that wouldn’t be the case, I went into it a bit blasé and not anticipating in the slightest that the combination of actually having to emotionally process what’s happened since we got back from honeymoon (it all happens so fast, to think about logically at the time is impossible) and the physical effect of having part of your brain destroyed on a daily basis (albeit as gently as possible and always with the view that your good bits of brain regenerate themselves, which they do) would be hardgoing. So the shock of feeling so physically bad and bewildered and confused and frightened all at once, let’s just say I ended the treatment a hissing, spitting, clawing ball of rage and poison. As Andy will testify. Bad wife, really bad wife!

Anyway, barring a tiny blip last week where I had what I now know was a mini-seizure on the way home from the tube (nothing too major, got a bit lost on the way home, took meds and was fine), all I can say is that today I feel OK. I’m still really tired, a lot of the time, which is going to take some getting used to but I hope will improve fairly soon. My hair fell out completely – for the third time, lovely! – the day after I finished and my forehead is a little on the pink side. Three separate people in work yesterday said I looked brown and had I had a sunbed? Which is actually good, I’d rather come in looking like I’ve been in the sun than pale and sickly-looking. The Weave is back on, carefully and gently but I’m just so glad to look and feel a bit more normal.

Where has all this left me in terms of THE DECISION? I know what my gut, and my heart is saying but that’s just what it’s saying now, having had a bucketload of poking, prodding, drilling, puking, crying. The good thing is I don’t even have to make any decisions yet, who could have anywhere near enough lucidity after having had what I’ve had to be able to make that kind of decision?! I saw Alison last week and without prompt she said ‘you need to get better’, listened to my chest and in spite of all the coughing (pretty constant), decided that my breathing was actually fine and there was no need for chemo at this stage anyway. So I see her again later this month and we’ll take it from there.

I can’t lie and say that during the past few weeks I haven’t really started thinking, in real terms – time? place? pain? things that need sorting before I go? The cats! Who is going to have the cats?! – about what my death will be like. At times, it’s felt like I’ve come to a fork in the road and the people who have been with me on this “journey” (ick, sorry, hate that cancer cliche bollocks), have suddenly had to stop at this junction and can only stand and watch as I have to take one of the routes on my own. I’ve walked a few steps up it, and it is not nice. At all. But I know, at the very end of the route, there is something that resembles peace and tranquility. I know that when my life comes to an end, I won’t be kicking and screaming. I know I’ll be ready as my body will have told me it’s had enough so I just leave my body here. Whether there’s something in/about you that goes onto other things, I have no idea but I’m not afraid of that. People have gone before me and they could be waiting up there – “Finally! You’re here! See, wasn’t so bad was it? Right, here’s the bar…” If they’re not and there’s nothing, well then it doesn’t matter does it? I’ll be dead so I can’t be disappointed. The thing I have struggled with, so much, is the absolute panic I feel at leaving people behind but I am slowly coming to terms with the fact I can’t change that people will be sad but what I can do is reassure myself that life DOES go on when someone you love goes. It hurts, and perhaps life is never quite the same again but in time, people move on and they cope without you. I have to believe that, otherwise I will never be able to go to my death in peace and that is all I truly want.

Having said all this, I’m now – right now – not on that scary, lonely path. I am at home. I am with my kittens. My house is warm, I have made a nice dinner for my husband who I have cuddled and kissed and laughed with tonight. I feel well, I feel happy, I am coming back to life very surely. I have been back to work a bit this week, I have plans next month for my birthday. Tomorrow I do my first shift with the Hackney Pirates. I am filling myself with the best, most nutritional food I can, swallowing so many supplements I rattle, filling my weeks with alternative therapy after alternative therapy – any day I’m not in hospital being fiddled with is a good day and anything I can do for myself to avoid having to go back there I’m totally game for trying. Today is a good day, yesterday was a good day, I hope tomorrow is too. I am under no illusion about what a precarious position I am in. No-one has any idea whether this treatment has worked and to be honest, I’d rather not know today. Today I don’t WANT to have to live with the reality, I want to just live. And live and live and live and live until I can’t live any more. This whole thing could go tits up in a very short space of time,of course, but it might not be for a long time yet. All I care about is today, and maintaining my sanity and dignity as best as I can which means surrounding myself with people and things that are going to nourish me in those ways. Today is all I have and I’m glad I’ve got to 9.46pm, having had a good day. I really can’t ask for much more at this stage. Oh and some drunk man said he liked my boots today which I thought was nice.

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.

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