tiltingheads

Cancer and other stuff

Archive for the month “September, 2011”

Stable

I know I say this every time but I really will keep this one brief. I had both scan results back this morning – there is no cancer in my bones and the things in my lungs are no worse. I’m stable. I love that word. Stable, stable, stable. I could say it all day and still never get tired of it. Lovely, lovely Alison with her very clever brain has spent the last few months tweaking the dose, adjusting the time between chemo by a week here, a week there and it sounds like she’s got it exactly right – enough drugs to keep the little bugger at bay, not so much my poor old blood can’t cope. God bless her. I’ll do maybe another two chemo sessions to give me a bit more time to bank then I can finally, FINALLY have a break. There is currently a very big green light for Thailand in January – I should come off chemo by November then that will be it until the end of January when we’ll see where we’re at then. Two whole months of no hospitals, no waiting rooms, no throwing up at 3am. I am literally the happiest girl in the world today.

One chapter

I’ve recently finished reading “How To Be A Woman” by Caitlin Moran. Some of you will know first-hand how funny it is and if you live in London and use public transport, you’re almost bound to have seen at least one woman glued to it in the last week probably laughing her head off. If you don’t know it, get it – you don’t need to know what it’s about, just get it. It’s been ages since I read a good book and, wandering round Waterstones, there it was. I’d been a bit sceptical about it, thinking it would all be right-on girl power etc etc which I’m not keen on but I had seen women on buses and tubes chuckling away reading it so I thought, well it’ll give me a laugh if nothing else and I could do with one of them. I was also a little dubious flicking through seeing chapters about boobs and having kids – having breast cancer kinda leaves you ever so slightly out of ‘the gang’ when it comes to this stuff, or so I thought anyway. So my rationale was: “well I’m sure I’ll have a giggle and there might even be certain ways this book reaches out to me as a girl, but probably not as a woman with breast cancer and all the complex questions and quandaries that raises, which is infinitely more serious, Caitlin.” I don’t think I could have been more wrong, there is something for every man, woman and stupid dog in this book. Read it and you’ll know what I mean. The chapter that really opened my eyes, in one sitting in the chemo suite recently is called “why not to have children.” Context: It’s very very unlikely I can have children. Not only would it be dangerous for me to come off my drugs for 9 months, there would be risks to the baby and anyway Alison reminded me this week that I’m likely to have been rendered permanently infertile thanks to these drugs (and all the rest of the poison I’ve ingested and had injected into me over the past two years). Caitlin Moran has two children and in the previous chapter, “why you should have children” which I was dreading a bit as I knew what was coming, she talks about what it’s like to have a child, how they utterly change your life, your view of yourself and she describes one scene where she is in the bath with her daughters, everyone’s biting each other’s faces and laughing and her husband takes a picture, and I thought – ‘there, that’s it’ – the one beautiful, heartbreaking moment I will never have and I’m sure the mothers among you will have your own versions of that bath scene. But, and here’s where she got me, more than any counsellor ever could, she explained that it’s OK TO NOT REPRODUCE, for whatever reason. Not passing on my DNA does not make me any less of a woman or, more importantly, a person. Which is all women are, humans. People who should try and be good and live useful, honest lives in the same way men should. My reason for being is not just to pop a couple out. It might have been 50 years ago but it’s not now. And I really get that now, I’ve had to. It will never, ever be acceptable to me that I won’t be a mother and it will never, ever not be devastating. I’m not OK with it, at all. But I’m getting there. Loads of people have rightly pointed out that there are ways round this – adoption being the obvious way and we all know there are millions of children round the world who need a mother and a family. But having cancer makes things really, really difficult on that front and I just don’t think I could put myself through that. The crucial thing though, is that what kind of life would I be able to give a child the way things are at the moment (note, I am aware that “you just don’t know, do you?” my situation may change in the future so I’ll maybe revise my thinking then). My life revolves around hospitals and treatment, highs and lows and for me personally, I don’t want to involve an innocent child in any of that. I’m knackered and drained enough in every possible way a lot of the time as it is. If I were to be a mother, I would want to devote myself utterly to that child and the desperately sad thing is that I just can’t. Not at the moment. It would be v easy for me to say “screw it, I WANT a child” but it wouldn’t feel fair. And IF the statistics are to be believed then there’s a fair chance I won’t be around long enough to raise a child to adulthood anyway. Mothers aren’t supposed to leave their kids while they still need them. Of course it happens, all the time sadly, but having some form of vague idea about my own life expectancy means I’m just not cool with knowingly bringing a child into my world when I might have to leave them when they are still quite little. It’s a personal decision, not everyone feels the same and I’m not expecting them to. It’s just how I feel. So basically, largely thanks to Caitlin Moran weirdly, I’ve made the very sad and reluctant decision to give up any plans for motherhood. At least for the time being. It’s mainly been forced on me anyway but constantly fighting against it and wailing about it is not going to help me. There are certain things I just have to accept, I’m picking my battles a lot of the time. I now see that there are lots of ways I can find fulfilment – I’m lucky enough to have lots of great things in my life, things I’m passionate about and can devote myself to, things that mean something to me. I was wondering how I was ever going to deal with and process the thought of a childless future but I’m a little bit closer to finding some peace with it. And any progress towards peace and calm when you’ve got this kind of insanity in your life is a good thing.

A bit mental

That’s what I am today – a bit mental. The good thing is I know why: every now and again, I’ll have one of these episodes where I’m all over the place and only just holding it together and instead of it being ‘Christ, what’s brought this on?’, it’s now becoming a bit of a regular pattern and I recognise it’s all linked to my next scan being just round the corner. And at least I can identify that now so that’s good.

I had a blood test today and tomorrow it’s off to see The Boss for the results and to see whether chemo goes ahead on Thursday. And if it does, my scan will be on 17th which is less than 2 weeks away. Less than 2 weeks. Every scan is important obviously, I’ve been doing this shizzle long enough to know that. But for me, this one is vital, paradoxically because the last one was so good. My weird illogical, irrational side is saying it’s bound to go the other way, you’ve had a year of being well, SURELY your luck is going to start running out any day now. And remember the chemo tabs I was on last year had a stunning result at first then out of nowhere they stopped working completely so you can never rest on your laurels. One good scan is good, better than a bad one obviously, but one good scan does not maketh the happy ending I so desperately want and if I am brutally realistic, know probably won’t happen. What does ‘bad’ actually mean though? Haven’t figured that out yet. If it’s good, then perhaps I can breathe a little easier for a while at least (‘scuse the pun). I’ve had a few niggly little aches and pains that I can’t seem to pass off as just that, aches and pains – instead I’ve almost convinced myself that ohgodohgodohgod it’s in my bones. Which I don’t do, I’ve never done! Today I had an x-ray on my hip, after getting a mysterious ache which I’m 90 pc sure is linked to a completely unrelated back issue I’ve had for yonks and yonks but, well, to quote what seems to be a very popular phrase at the moment, “you just don’t know, do you?”

A good friend who also has secondaries described our predicament perfectly recently when she said that having secondary breast cancer is like someone walking round 2 steps behind you with a gun to your head every day for the rest of your life – you never know when that trigger is going to be pulled, could be months or years but there’s a pretty good chance it’ll go off at some point. I’m just not ready yet.

Anyway, as I’ve spent the last year coaching myself – there’s no point worrying about something before it’s even happened so perhaps it’s best to get all this mentalness (I know that’s not technically a word but I like it) out of the way now so I can get my shit together for chemo and my scan. Yes, good plan. No doubt there will be news soon but in the meantime, please please say a prayer for me as I could really do with them at the moment.

One year on

Can you remember what you were doing on this day last year? Apart from all this pinchpunchfirstofthemonth thing and mourning the end of summer? Probably not. I can. A year ago today, my world fell apart when I was told my cancer had spread to my lungs and was now incurable. The last 2 and a bit years have been crazy and there have been too many things happen to keep track of but I can remember like it was yesterday every detail of September 1st 2010. Rewind slightly…

Having had my mastectomy in July last year when I was diagnosed for the second time, the plan was always to do the left side first, then do the right side as a preventative – due to the BRCA1 gene thing, there was and still is, a strong chance it would come back in my ‘good’ boob so as hard as it was to accept, it was a no-brainer to get rid of both and hopefully put an end to this nightmare and stop it from ever happening again. The thought of losing both breasts was not a particularly rosy one but when you’ve had cancer twice in the space of 18 months, you don’t really have any other choice. So I was due to see my surgeon that week to discuss dates for more surgery. The reconstruction I had is a big op and involves pulling a big muscle from your back round to the front so they’re generally not keen on doing both sides at once, hence the few months gap between ops.

On the day of my appt to see my surgeon I get a call from my breast nurse to say it’s been cancelled and I needed to see my oncologist urgently. She wouldn’t be drawn on what it was about, just said to get to UCH as soon as I could that week. I’d had a CT scan the week before so alarm bells did start to ring slightly but I assumed they may have seen something that needed a closer look but would turn out to be nothing. I’d had a CT scan in July that was clear so there was no reason to think this one would be much different. I go to a lot of appts on my own but for this one I asked my friend Lisa to come.

We got on the bus to the hospital and I remember we were discussing Cheryl Cole (anyone who knows Lisa knows this is fairly standard). I was wearing a pink and grey t-shirt, Lisa in denim shorts. On the way, we were speculating what it could be and jokingly talked about a brain tumour. I don’t know why but we definitely weren’t serious. We get to the hospital and after waiting a little while, get called to see the oncologist who was in a rather fetching electric blue jumpsuit. The first thing she said: “I know you know this isn’t going to be good news…” and after that it suddenly gets quite fuzzy. Nothing can ever prepare you for what follows, talk of prognosis, life expectancy etc. This was never, ever supposed to be part of the plan. I’d had cancer twice already, maybe I should have considered this was always going to be a possibility but in all those 2 years, not once did I ever dream, not even for a second, that this could happen. I thought they would just sort it out, it didn’t even occur to me that to get cancer a second time in such a short space of time was a v bad thing. It was just a headache, an inconvenience more than anything.

I do remember lots of hysterical sobbing and that Lisa walked out of the room for a couple of seconds. She came back in of course and to this day I can’t imagine what having to hear that must have been like for her. I was told to come back next week as I would be starting new chemo and that was apparently that. We sort of stumbled outside, then the phonecalls started. Lisa called my friends Liz and Katie who immediately came to the hospital and shepherded me to the nearest pub where we spent most of the day getting smashed trying to process what we’d heard. Before that though I had to make the call home to my parents. Of everything that’s happened to me, that was by far and away the worst thing of all. I have never heard my dad cry like that and I never want to again. He was literally heart-broken, I think we all were. That was September 1st 2010.

So here we are, a year on and where are we now? 365 days later and far from my world ending, I’m still here, still fighting. I have a new job i love (with the same company who have been unbelievably brilliant to me), a new home and of course someone completely wonderful in my life who never fails to surprise and delight me on pretty much a daily basis. I never dreamt on that awful day I’d be where I am now. I thought I was going to die and I’m very far from that. A year on and I feel no different physically. A bit more knackered, a bit more creaky but I’m also a year older so I put my complete inability to stay awake past midnight or to be able to watch a film without falling asleep a third of the way in down to that. There have been lots of disappointments, lots of heartache but it’s not that constant agonising emotional pain it was in the first few weeks and months, it’s more of a dull ache that some days I don’t feel at all. It doesn’t occupy every waking thought any more. Of course it’s always there but I have learnt, somehow, to cope and to find a place for it in my life without it completely taking over. I’ve learnt to be calm (no easy feat for me as anyone who’s known me a long time will testify), I’ve learnt what gratitude means and I’ve come to love it. At times in the last year I’ve been happier than I ever have been because I am literally grateful to be alive and getting up in the morning. I’ve learnt what’s important, I’ve developed that sense of perspective I spent so long looking for. I’ve realised the true value of friendships and my eyes have been opened to the true concept of love for the people around me. I finally, FINALLY know who I am and I wouldn’t swap that for anything. I embrace honesty above everything which is something I could never do but is now a code I absolutely have to live by, no matter what form that comes in. I’ve found courage, to somehow drag myself through whatever needs to be done but to also admit when I can’t do it any more which for me is the ultimate measure of being brave. I don’t live in shame or fear any more, they have no place in my life and it wasn’t always like that. I have seen the absolute best in people and loved them all the more for it. Put simply, facing my own mortality has led to a better life for me and I’m grateful for that. I wish this hadn’t happened, with all my heart, but the processes I have had to go through have been good for me and made me a better person than I could have ever hoped to be. I have no idea what will happen another year from now but all in all, if I have another year like the one I’ve just had I’ll be happy with that. It could be a million times worse.

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