tiltingheads

Cancer and other stuff

Archive for the month “July, 2012”

Elvis Safari

So I’ve been on this new drug for just over a week now and I’m annoyed to report that, despite Alison and virtually everyone I know who’s been on it previously (including my mum when she had breast cancer 10 years ago) saying it wasn’t a particularly nasty drug, it’s been pretty unpleasant so far. I started last Wednesday – Thursday and Friday I felt a bit like I’d been in a scrap and come off worst against the other girl. Everything hurt. The weekend was a little better and by Sunday I was gently cycling to church in the brief sunshine. But still not really right by the time yesterday rolled around and it was time for the second hit. I’ve mentioned before I’ve got bad veins, it comes with the territory now, and the one vein they’ve been using in my thumb has now pretty much disappeared. Cue three different nurses having a go: three different nurses, one collapsed vein in my hand, another ‘blown’ vein in my forearm later and they summon the big guns in the form of Elvis Safari (that is his actual name, and yes he’s a bit bored of the “Elvis has left the building” jokes every time his shift finishes, bless him). Anyway he’s a complete legend and managed to get the needle in a big vein on the inside of my wrist. I didn’t really want the portacath back due to the problems I had with the clot last year but it’s looking like a dead cert I’ll have to have another one fitted as I can’t keep being stabbed like this every time I go in. Eventually it’s all done and me and Goldenballs pootle off home, very glad to be out of there for a while. The staff are lovely and they try very hard to make it as ‘nice’ as possible but it’s getting harder not to sit and cry every time I have to sit in “the chair” which probably makes everyone else, especially the other patients, feel really uncomfortable. I’m always the youngest one in there by a long shot and the ‘bleep bleep bleep’ of the various machines seems to set my teeth on edge for days afterwards. I used to be the calm, pleasant, polite patient – now I’m turning into the quivering, snotty mess in the corner and I don’t like it.

I was awake at 3am this morning, steroids you take to stop you being sick play havoc with your sleep, so no real surprise there. Except by 4am, a big bout of sickness comes on which lasted till about lunchtime today. Up come the anti-sickness meds, up comes my twice daily pill to stop my brain melting, alongside what feels like everything I’ve ever eaten, and then some (nice image there, hey?). If last week is anything to go by, I’m set for a few more grim days but will hopefully start feeling better by the weekend, if I’m lucky.

This would all be do-able, fine even, if I knew there was a really good chance that this drug would work and there could be but we all know it’s unlikely. At least I KNOW it’s unlikely. It’s one thing willing yourself to keep going mentally, psychologically and emotionally – and God knows I’ve done enough of that over the past three years – but it’s infinitely harder when you feel so physically shit and the only reason you can think why you’re doing this is in the desperate hope of what can ultimately only be a few more months. And if a few more months means spending a chunk of that time housebound, head in the toilet bowl, pacing the house at 3am wired off my face on steroids, unable to make plans past the next week, unable to go to work, then really is it worth it? Is it? If, at my scan in September they say ‘yes it’s worked, things are no worse’ that would be totally amazing. I’m past hoping for a cure, I’d be happy with stability. But let’s not forget I’m still not off the hook and I’ll have to go through this shitty chemo cycle again and again and again. What kind of life is that? Not the kind I want. I look in the mirror and I see a face I don’t recognise any more. I see someone desperately tired, someone who used to spend every Saturday tearing up a netball court, someone who used to bounce around everywhere, who was happy and who still is mainly, but who is now broken in a way that not even the most beautiful marriage can heal completely. I see someone with no hope of any real plans for her life at 32, beyond just get through this next lot of chemo. Whoopie do. Someone who, more than anything, wants to be able to have her husband’s children and together nurture and raise and teach them all the things they need to know to feel loved and warm and secure and happy and confident. I see someone who feels guilt and shame that, instead of that, I’m putting my husband in the heartbreaking position of never being able to have those things with me.

I don’t like to moan, I know I am so lucky in lots of ways, and my God things could always be worse and complaining is just boring but sometimes, just sometimes, I wonder why I am doing this and how much I have left in me, realistically. I know, whatever anyone says, that I haven’t got that much time left mow and I know too that, after this lot of treatment (2 down, 4 to go) I will have to make some big decisions about what I want from the time I do have left. This kind of talk frightens people but I’m just being honest. If you were in my position, having endured 40 odd sessions in “the chair”, a few big ops including brain surgery, countless hours sat in waiting rooms and everything else, to continually be told that however long they can prolong your life, it’ll only ever be that, then I’m pretty sure you’d feel the same. For now though, we’ve got a brilliant wedding party to plan for in September and it’s all starting to take shape nicely. After that, who knows? Never say never I suppose.

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Terry

I finally got round to sorting a new GP this week, a year after moving house (I know). No big deal, people change GPs all the time except whoever my GP is is required to be a large part of my care, so it’s pretty important I find the right person – he or she will be part of a team that seems to get bigger every few months, who are (supposedly) collectively meant to come together, be joined-up and make decisions about what is right for me. The joined-upness of the various doctors, nurses, surgeons and specialists is another topic entirely; let’s just say it leaves a lot to be desired. I generally really like, trust and respect the people who are looking after me and know that each has my best interests at heart but the only person who really has a proper understanding of where I’m at with all of them individually is me. Ideally I’d have some central point of contact who would help me navigate this maze – I’m not even joking when I say that approximately half my daily life is spent at some medical appointment or other, whether it’s the hospice, the hospital, the GP’s office, the clinic and I never did get my PA (anyone fancy a job where you’re paid in cake). Access my calendar in work and you’d see about 2.5 days worth of appointments and travel to, from and between various places every week.

The latest big appointment this week was with Alison on Wednesday. Disappointingly, although not surprisingly, I got the call from the research place on Tuesday night to say I don’t have the right score for the trial so it’s one more option gone when there are few left as it is. Having discussed it with Alison, we’re now going to try a treatment called CMF, starting next Wednesday. Day 1, day 8, 2 weeks off. Repeat 3 times and scan. Sound familiar? Welcome to my life for the last 18 months, barring a 9 week break in January. CMF is an old drug combo (the letters stand for 3 different drugs) which used to be the “gold standard” for breast cancer until the 1990s when all these fancy, whizzy new drugs came to the market (none of which have worked for me by the way. The most recent, Eribulin, so expensive and exclusive you can only get it via a special fund? Epic failure for me. Sorry to anyone reading this who may be about to start it – the evidence is good and I know of a few people for whom it was a success). Alison has been very honest – there is more chance of CMF not working than working but she still thinks it’s worth a go and if The Boss says that, who am I to argue? Especially when I’ve got a husband to wrap myself in and bury my face in his neck. Alison, as well as being tough as old boots and a formidable force in the medical world, is also human. When we talked this week and she saw silent tears of disappointment and heartache fall down my face at the thought of more chemo that might not do anything she scooped me in her arms like my mum would do. We are in this together, me and her, and I know whatever happens she will be there.

Anyway back to the GP – whose name is TERRY by the way. Whoever heard of a GP called Terry?! I have no idea why I find that so amusing, it’s just tickled me all day. As you know, when you register with a new doctor you go and see the practice nurse who does your blood pressure and weight, asks you when you last had a smear test (yuk), all that. This (very nice) lady asks whether I have a family history of cancer, I say yes and instantly I can tell she has read none of my notes. I then had to spend 10 minutes recounting and explaining the last three years in detail, peppered with questions like, ‘well can’t they just retry some of the chemo you’ve already been in case it works this
time?’ Actually, no they can’t. Then she concludes with “well you just have to stay positive, don’t you?” Cue head in hands. I understand, I really do, why people say that and of course I agree. If I was sitting at home in a dark room weeping, it really wouldn’t help. If I moaned to everyone I came into contact with how unfair the whole situation is, if I complained and bitched and whined all the time, if I made cancer my life I would bore myself to death in seconds. That’s why when people like Alison hold me, just for a minute, and don’t try and say anything “helpful”, it’s so much better. Because Alison, and my palliative care doctor at the hospice, Karon, are just letting me BE. They never use the words ‘fight’, ‘battle’, ‘brave’. They never throw Lance Armstrong in my face. Good for you Lance, really, and I haven’t given up the hope that that could happen for me too. Of course I don’t want to die yet – I’m only 32 and I’ve just got married. But I have to be allowed to confront my own death and come to terms with it and be OK with it and talk about it and plan it and finally take some control back and not be made to feel like I’m “giving up” purely because I refuse to use up every last bit of my energy praying and hoping and wishing I could get better when there are other things I could be doing with it instead. A couple of people have looked at me in horror when I tell them I’ve done a will, written guidelines for my own funeral, the songs I want to be played, the type of readings I want, the things I want to be remembered by. And I find that completely bizarre. As far as I am aware, no-one has ever lived forever and surely, SURELY, it’s better to have some kind of influence in your own death and the aftermath. And importantly, let this have an influence on how you want to live your LIFE before you die? I am still very much alive. When I’ve finished this, I’ll stick another load of washing on, put new sheets on the bed and catch up on Coronation St. A part of being alive is accepting that you will die one day, not running around with your fingers in your ears saying it won’t ever happen and just keep fighting and battling. Death is part of life and the sooner you get your head round that, the better. That’s not to say I’ve sat around for the last three years thinking and fretting about dying, any regular readers of this blog will know that, but as I come to the end of the treatments that can be offered to me, it’s natural to spend time considering what the end could look like. I’d like to try and make it as “easy” as I can for myself and others around me and, while I won’t go into detail, I have had all the conversations with Karon that I’ve needed to and I know that, when it comes to what will be the conclusion of my life, she is absolutely the woman I want on my team.

I know this is a long one but I suppose I would just like to conclude by saying that it’s ok to talk about dying, it’s ok to try and plan for it because it WILL come to everyone. I’m not sad about it, I feel relieved at having been given the opportunity to get my shit together and my affairs in order. And in the meantime I’m going to carry on smothering myself in my husband, laughing with my friends, having regular long phone calls with my mum, going to festivals, working, eating cake and drinking beer.

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