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.