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Cancer and other stuff

Archive for the month “August, 2012”

Mud and shoes

Last weekend the Boy Wonder and me packed our rucksacks and enough bread rolls and bacon to feed an entire festival, and headed off to Wales for Green Man festival. We haven’t been to one all year and I’d guess we’d normally go to at least two (last year we went to four, that was plenty!). We’ve also both been so busy that a bit of husband-and-wife time was in order, before all the madness of the W overtakes us all (four weeks to go and still a silly amount to do – HELP ME BETH). Apart from the rain (well we were in a Welsh valley), it was nice just to wander round drinking fine ale, eating too many churros and listening to bands we knew and those we’d never heard of.

Green Man is quite small, with a very laidback atmosphere so it’s the perfect place to take kids. We spent many hours watching children chase bubbles and each other, with sticky, muddy little hands and faces. And I think that’s when the penny might have dropped – I thought I’d come to terms with not having children a long time ago but that was before I married the most wonderful man. We’re still very much in newlywed mode and as having a family has never been on the cards – we both knew that, right from the start – we’ve never really discussed it, what’s the point? But that weekend, as well as being lots of fun and we were very happy to have each other to ourselves for four days, was also the first time I’ve felt the really sharp pain of never having my own child. There were split seconds where Andy and I were sat on the grass and I felt like we’d lost something, the feeling you get when you know you haven’t got your wallet or something (not comparable obviously, but you know what I mean). Silly thing is though, how can you lose or be missing something you never had, and were never even likely to have? I know how it is, I accept that me having a baby would be a terrible idea, even if it were possible at all (probably unlikely, I reckon I have a period about every four months, if I’m lucky, at the moment – sorry men reading this). But it doesn’t mean I can’t mourn it occasionally, that baby of my husband’s that I’ll never be able to give him. I know Ellie felt the same too sometimes.

Anyone in my situation has to focus their attention really hard on the short-term; you’re so busy just trying to get to your next scan, through chemo, hoping your brain doesn’t pop again, watching out for every little niggle wondering if this is the start of “it”. Trying to just stay alive and sane and live as normally as you can under the circumstances. But I forget, and sometimes I think a lot of others do too, that ‘normal’ would really be being able to make your own decisions about your life. If I didn’t have cancer, perhaps I’d be sitting here thinking “a baby? No thanks.” But I don’t have that choice any more. Perhaps maybe a part of it is that the very things that were designed for me to create and sustain a baby (BRCA1 has a link to ovarian cancer too) are the things that are trying to kill me apparently so it feels doubly cruel.

 

Anyway who knows? Am sure it will pass. Am starting to get a bit nervous about the wedding, the thought of people staring at us (please don’t stare!) is odd and slightly discomforting at the moment but am sure once the final plans are made and I’m in that dress, that’ll disappear. I’ve been re-reading Ellie’s blog the last couple of days and it’s really made me miss her. So many of the things she talks about are familiar, the drugs, the veins, the portacaths and blood clots, the blood transfusions. But I hear and see glimpses of other things too, undertones of where she was at that only someone who has been in the same place will ever hear and recognise. As she was gearing up to her own wedding and the start of her married life, what else was she thinking? I know how much in love she and Tom were, because Andy and I are the same. Did she too have pangs of real sadness about babies? I know that we are/were both incredibly proud of our relationships and grateful, every single day, to be in love wih our boys, and they would always come first. Babies would have been a bonus, our men are/were enough. I think I know what she’d be thinking now too – “get the shoes on love, they make everything better” and she was right. I’ve got them out of the box a few times this week and whilst I might not have a baby, I’ll always have these beautiful shoes and a husband I am nuts about.

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Gamble

Yesterday I went to see Professor Powles for my quarterly chat; I’ve written about him before, I see him every three months for a catch-up on how everything’s going. Long story re the specifics of what we discussed but I told him I wasn’t getting on brilliantly with this new drug and he took a long, hard look at me and said “sometimes doctors can tell more about a patient by looking at them in the waiting room than they can by studying scans.” His suggestion was, maybe it’s time for a break. Yes, on paper, things really aren’t looking good for me and yes, on paper, I’m staring at the bottom of quite an empty barrel, but the thing is I generally don’t FEEL like that. I don’t feel as ill as I should or could or might do in the future. And the ‘quality of life’ thing everyone said would be so important in the future (with an ‘obvously not for ages’ caveat as there are loads of drugs left to try) is becoming an increasingly big factor in how I and my team manage this condition.

This blog has come to be really important to me and it’s never more so than when I go back and read through what I’ve written. I think my last blog post scared a few people as there was obviously quite a big air of despair about where I was just after that chemo session. I’ve actually recovered pretty well and had a good couple of weeks – I’ve been cycling everywhere, in the office more, going to visit friends, generally having a lovely time with my husband and planning what looks set to be quite an epic day next month (argh!). Almost like I’d never had chemo so even I read that last blog and think ‘God yeah, I WAS in a bad way, wasn’t I?’ And that’s a classic example of the complete headfuckery of my situation – one minute you’re throwing your guts up, wondering if you can carry on, it’s so horrible; the next, you’re flying down Spring Hill on your bike. This blog was never really meant to be anything than a way of keeping people up to speed on what was happening, but, vitally, it’s become a way for me to record where I am mentally and emotionally at any given time as it can change almost daily. This is most definitely not a ‘how to’ guide to dealing with cancer, I have no advice, no words of wisdom and I’m aware it can sometimes make difficult reading but absolute raw honesty is all I have to give. I don’t go breezing aound saying ‘yep, everything’s totally fine, I’m really strong blah blah’ because that’s not the case. At all. It’s really, really shit sometimes and it’s really, really not too bad sometimes too.

Anyway, off I go and see Alison today ahead of what was supposed to be the start of my second chemo cycle – I floated the idea of a break to her and she almost instantly agreed, to my surprise. Between the three of us, we’ve reminded each other that a) I’m only ill from the drugs and b) the point is to keep me well for as long as possible. So I’ve been given two months off chemo and, barring any disasters, won’t go back until after the wedding and a good honeymoon, in October. Two months may not seem long to you, to me it’s a lifetime. I know there are risks but really, there are risks in everything – there’s a big risk that drug wouldn’t have done anything anyway, then I would have had to face cramming in 4 more sessions, plus 2 scans, all whilst trying to plan a wedding and live a relatively active life, the life most other 32 year old women have, just for them to say ‘oh no that hasn’t worked either, sorry.’

There isn’t really a day when I don’t think about Ellie and I doubt there ever will be, and it’s at times like this, I could REALLY do with her advice. I wonder what she would do if she were me? I know what she did for herself but we are two different people and, of course, when she died it was probably no surprise to anyone that not only was I grieving for her, I was also absolutely terrified for myself. What had happened to us up until that point had been so scarily similar, I just assumed I was next, and soon. It’s been almost three months since she died and as much as I still miss her for the person she was, and not as a cancer patient, I have also come to realise that we were quite different in lots of ways. As Tom quite rightly reminded me fairly recently, Ellie was nowhere near as well as I am now when went into her final chemo. And I really want to stay well, for as long as I can. But if that means calling a time-out for a while, just for  bit – I can always pick it back up in October if I need to – then I’m willing to risk it. No-one can give me clear answers any more, they stopped being able to do that a long time ago, so it’s all a calculated gamble, with some prayers along the way.  And in the meantime, there are LOTS of exciting things happening, not least the wedding (sorry I promise not to bang on about it forever). There’s lots going on there and I’m lucky enough to have a fantastic group of friends, old and new, all pulling together to make it brilliant. I had thought for a while that I wanted to do something in Ellie’s memory on the day and I’ve bought the same shoes she would have worn for hers. They’re so perfect, every time I look at them I get misty-eyed because I know how beautiful she would have looked and what style she had. It really does feeling like I’ll be walking into that church for both of us.

So that’s it essentially. No more chemo for a while. I have no idea if this is the “right” thing to do, it’s just so unpredictable but I’m learning to rely on my gut instinct and that is currently telling me it’s right. Whether this proves a mistake, well we’ll only see that with hindsight won’t we? But for now, I’m snatching these two months with both hands and, as Ellie would have said, “grabbng life by the balls.”

 

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