So, it’s almost that time again. Am getting used to the idea now that I never really get the chance to get used to anything before it all potentially changes again and I have to deal with a whole new set of new challenges, largely involving a change in treatment. Having been on this chemo since early May, and pretty much hating it yet resenting the delays I’ve had with it, I’ve now got technically one more blast on Thursday then the scan to see whether it’s worked will be here before you know it. And then what? The agony of having to sit in a waiting room every 6 weeks to discover whether the treatment has worked or that it’s actually got worse, well it’s pretty grim put it that way. It never gets any easier.
At times like this, it helps to try and be logical and look at the facts. In September, it’ll be a year since I was diagnosed with secondaries. A year! I still can’t quite believe it. On the one hand, I’m in a great place considering. The first thing I’m sure a lot of people in my position ask is ‘how long?’ It’s definitely what I asked and I was told that, worst case scenario, it could just be 2 years. Hearing that at 30 is MENTAL. BUT, here I am, 9 months on and feeling no different. Looking no different? So there is a part of me that thinks maybe, just maybe, I might be defying the odds? However, it also might be the case that my time is now starting to run out and if my treatment options keep failing as they have, then maybe that initial time estimate might turn out to be true after all and this next sitting around in the waiting room might end with the devastating news that it’s spread somewhere else. I just don’t know what I am supposed to think. What would you think? I reckon I’m still pretty much on the optimistic side but you just don’t know do you? This isn’t me being dramatic, I wish it was. Every scan I have could well be the one that goes really bad, it’s not been going so well so far has it? And when these scans come around every 6 weeks, you might be able to imagine how little time I ever get to relax and try and get on with a normal life. It’s a wonder I’m still sane although if you talk to the boy wonder I’m sure he’d vouch that’s questionable at times, God bless him.
Still a little way away yet though so not panicking just yet. More worried about the forecast for Glastonbury at this rate.
I passed my blood test finally today and chemo starts tomorrow. If you read the last blog post you’ll know how pleased I am about that.
I’ve also had a good day on another level – today I did my first bit of work for Breast Cancer Care, having been accepted onto the Board of trustees last month. I’m SO pleased about this – it’s a huge charity, and one that I’ve had lots of support from over the past 2 years. They offer a lifeline to anyone diagnosed with breast cancer and they support you every step of the way, however long your journey. They’re also big into campaigning and have started some great work around secondary breast cancer and ensuring women like me get the support we need, which is so different to what you need when you have primary breast cancer (when it hasn’t spread). We shouldn’t be forgotten about or written off, we’re still people and it is perfectly possible to live a relatively normal, happy life even with this thing. I’m living proof that you don’t have to be wholly defined by breast cancer (yes a lot of my life is, it has to be, but at least I have the chance to make it on my terms) and I really hope anyone reading this in a similar situation sees that. Yes it helps I have great friends, a family who love me, fantastic employers who genuinely care how I am and a man in my life who I’ve come to love very much but it’s also about attitude. Of course I am scared, and sad a lot of the time but the majority of the time, I’m not and that’s all that matters. I work hard every day to keep life normal. It doesn’t always work but on the days it doesn’t I know I can try again the next day.
Anyway I’m really, really pleased to be a part of this charity at quite a high level now and I hope I can help make a difference. A bit Miss World but definitely true!
I am aware that I am blogging more frequently than ever at the moment but that’s because lots of big stuff is happening, or at least it should be. I’ll try and make this one quick as I’m knackered and a bit hungover from Karen’s show last night but basically my chemo was delayed yet again this week: on both Wednesday and Thursday my blood count was too low, in fact on Wednesday it had fallen from the previous week which it shouldn’t have done given I’d had an extra week’s break. So it’s yet another week off, putting me almost two weeks behind schedule now which is not ideal and runs the risk of me being ill for Glastonbury.
I can’t quite understand the reasons for it being so low, I normally sail through these tests so it’s all a bit of a mystery and I can’t help this nagging feeling that perhaps my poor body is just not coping with all these drugs, I’ve barely had enough time to recover from anything for the past 2 years. That’s a very scary possibility – that my body might say ‘enough’ before I’m actually ready to. No-one likes having chemo, it’s totally crap, but now I’m starting to get nervous as the longer it gets delayed…well who knows what these things in my lungs are doing, they could be growing and spreading as i write which is totally terrifying. I’m sure I’m just being dramatic and all will be back on track next week but it just seems to be one thing after the other with these drugs at the moment – sick as a dog when I’m on them, bit freaked out and paranoid when I’m not. I can’t win! 😉
I think the best thing I can do is stay calm, get some rest and eat well. And thanks to my boy and his green fingers, I’m getting through some really nice homegrown veg so that’s good.
Fingers crossed for Thursday then I suppose?
Tomorrow I am attending the private view of the final year show of a friend of mine, Karen, who has just completed a three-year degree in photojournalism. Nothing too exciting about that you may say, except I am in it. I AM it.
Karen and I have spent the last 6 months working together and she has been shadowing me taking pics of various things, including hospital appts, scans, weekends away, days out, lots of things really. When we started this project, we both agreed that we wanted to capture the reality of my situation but also to show the other side too – my life is not all bad, in loads of ways it’s good and better than it ever has been, there’s just obviously a rather large shadow lurking but it is possible to still live a normal, happy life.
I don’t think either of us will claim that this intense experience has been easy – there have been some days when I’ve found it incredibly hard to have some very difficult and personal moments captured on film and I’m sure I haven’t always been the easiest to work with. Karen has had to go through much of the ups and downs of the last 6 months with me and I know it’s been very upsetting for her at times (Co-op, anyone? Sorry private joke). To her credit she has been flexible, gentle and as unobtrusive as anyone can be, and I guess that’s the mark of a good photojournalist. We have also become firm friends which has been a bonus.
I saw the pictures for the very first time last week and I was, of course, initially very apprehensive about how I would feel looking at them. Would it bring it all flooding back and would I have to relive certain nightmare moments all over again? Weirdly, that’s not how it felt and actually, it made me see how far I’ve come on this journey and I’m proud of me for that. One or two pictures will probably be very harrowing to an outsider and I guess if you haven’t been directly involved, then the sight of me crying rather hysterically (all screwed-up, red snotty face – nice) and looking so desperately scared and sad might be a bit unsettling. But there are other, happy ones too! This is my life, in all its ugly, messy, heartbreaking moments and it’s important to me, still is, that it’s reflected in reality. Breast cancer isn’t all about pink fluff, glitter, painted wonderbras, girl power and ‘the cure’, as great as all that stuff is. There are scars, emotional and physical, and moments of blindingly amazing happiness followed by the pit of absolute despair, especially for women like me who will never be ‘cured’, but the point is it constantly changes and it’s real. Not all bad, certainly not all good, but whose life ever is and having an illness like this is no different.
Anyway I’m really, really pleased with what Karen has done and I think everyone who lives in London should go see her show when it’s on next week. I’m proud to have been a part of it.