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.