At last a gap appears
Well that blog hiatus didn’t last long did it? Think of this as an interim update – I’d forgotten how useful this blog is as a way of just keeping people up to speed and the amount of texts, calls and emails I’ve had asking how I am and what’s happening reminds me why I started writing it in the first place. There are only so many times I can keep repeating ‘not much to say at the moment but I’ll let you know when there is’. I don’t mean that to sound ungrateful, it’s hugely touching that so many people seem to care but I really need to not talk about it all the time. So it’s only fair to everyone, me included, to provide a quick update.
As you can see, I’m still here. Three cheers for that! Medically, it’s a bit complicated and I really can’t be bothered going into the specifics because it’s quite unfamiliar to me but it’s all being worked on. I’m in quite a lot of pain much of the time; not all the time, some days better than others, and hopefully moving in the right direction. My energy levels aren’t great – I’ve never been one for middle-of-the-day snoozes but they’re increasingly necessary. The fact is I have things growing inside me that leech off a lot of my energy and there’s only so much to go round unfortunately. I’ve been prescribed a whole range of different pain medications, much of which has made me sick, so it’s a case of trial and error and I’m confident they’ll find the one that’s right for me soon. I’ve got scan results due this week, then a brain scan will happen next month. So on a medical front I have nothing to report really but probably soon.
I think the above makes it all sound quite bleak and it has been quite bleak at times to be honest but I remain hopeful that this is all temporary and I will start to feel better soon. I’ve got a new palliative care doctor who is brilliant and has assured me that I’m most definitely not going mad, and that the reason I still don’t feel on top form head-wise is because whole brain radiotherapy is actually pretty invasive and it takes a minimum of three months to recover from the immediate effects, and can be up to 9-12 months before you’re fully over it. I think I’ll be over it quicker than that but it’s a relief to know I’m still in recovery phase and can stop worrying about the fact I still don’t feel better, I still don’t feel better, ohGodohGodmybrain’sknackeredforeverisn’tit? No. It just needs time to heal, and it will heal I’m sure. I often forget I had brain surgery two weeks before so no wonder my poor noggin has taken such a battering.
I’ve been working very hard to somehow plough a way forward from where I was over Christmas and the New Year because I knew I definitely couldn’t stay in that misery for long. All I could see was a massive black mess in front of me with no idea where to even start to try and sort it out and after much soul-searching and with the help of my counsellor, I’ve realised that I am still terrified. But whereas before I couldn’t properly identify what I was frightened of, now I am a little clearer. Am I scared of dying? No. I’m scared of what happens between now and then but worrying about that isn’t particularly helpful or a very good use of my increasingly precious time and I have approached that like I would a work project: identifying who needs to be involved, when, what everyone’s role is, is everyone briefed on what they need to do. Yes? Then park that, it’s done. Medicine, oncology, palliative care – not my job, I have a team of experts who will look after me if/when problems present themselves. I cannot sit here worrying ‘well what if THIS happens, what if THAT happens?’ I’ve had long conversations with all the relevant people, they all know my concerns and I feel confident they will do right by me.
My biggest, most crippling fear relates to lack of control. I have been incredibly lucky in the 2.5 years that I’ve had secondaries in that I’ve never been troubled by obvious symptoms of cancer. I’ve felt well, I’ve continued working, I’ve played netball and cycled, I’ve had holidays, been to gigs and festivals, been to the woods and made chairs from tree trunks, and of course I met and married the love of my life. I’ve been able to dictate how this fits into my life, and I’ve largely been pretty good at it. I’ve never played the ‘cancer patient’ (although the C card has come in handy occasionally – we got the money back on the honeymoon by the way), I’ve been adamant I am NOT cancer and can we all stop head-tilting and carry on as normal please? I haven’t dragged people to hospital appts or chemo sessions with me, I’ve been determined that cancer and all the tedious, boring admin that comes with it (and there is a lot, my God there’s a lot) is going to affect as few people as possible. And for so long, that worked and it was great. But it’s becoming a little different now because for the first time, I don’t feel very well. Not REALLY AWFUL, I THINK I’M GOING TO DIE SOON bad. Just tired, barely an appetite, and old. I feel old. I look at my bike in the conservatory and it makes me sad to wonder if I’ll ever go flying down Spring Hill on it again. I can’t fill my diary with things any more because I really can’t predict one day to the next how I’m going to feel and that is SO frustrating. What, I can’t even run my own diary now? For so long, cancer was a thing I had and it was horrible but it didn’t have too much of an impact on what I was able to do.
The other thing I’ve been reflecting a lot more on is the impact this is all having on those close to me. Over the years, people have asked if they can help, what can they do? And I’ve breezily said, no honestly I’m fine but thanks for asking. Because I never, ever wanted to be the one who needed help and I didn’t need it then anyway. But now I’m having to be really honest with myself and admit that’s sometimes not the case any more. The problem (which I’m working on) is that I just feel embarrassed. And guilty and almost ashamed, like if I admit I need help, I’m giving in to this disease and I’ve failed. I am a 33 year old woman, with a job, a home, a husband and two kittens. I also have a career and ambition and hobbies and interests and ideas about how I’d like to grow as a person. And a lot of the time it feels like I am being held back by my (hopefully temporary) physical limitations and it makes me feel sick, sick to my stomach. And furious. And screaming in frustration
The breakthrough I’ve had recently though is turning it all on its head and imagining this was all happening to one of my friends. Would I see them as anything less than they really are because they had cancer? Would I see ‘cancer’ before I saw them, their personality, their spirit, the reasons we are friends in the first place? Would I forget all the amazing times we’ve had before cancer so rudely interrupted all our lives? Would I think it a hassle to go with them to hospital sometimes? Would I think, because they needed a bit of extra help occasionally, that they’re beyond help now really and they’re just the cancer patient *head tilt*? No, I wouldn’t. And more importantly, I would be absolutely horrified and devastated they could even think that, and very, very sad they felt they couldn’t come to me when they needed to. So how have I thought that shutting my friends out when they’re so desperate to do something, ANYTHING, to help is acceptable? Watching a much-loved friend go through this must be horrific and I’ve been a fool to not allow people to help. For their sake as much as mine. So, reluctantly, that has to change. I don’t need a steady stream of visitors with tilted heads bringing flowers like I’m about to croak it any second, I don’t need presents, and I definitely don’t need sympathy thanks. I just need… well I don’t know yet, I haven’t figured it out yet but I know I’ve brought a lot of the darkness on myself by misguidedly trying to protect the people I love from the realities of what living with advanced cancer brings. And I won’t be able to do that forever, will I?
So. To summarise. Yes things are still up in the air, no I don’t know what’s going to happen yet but I’m trying to be a bit more realistic even though I don’t want to. I’m keeping an open mind, hoping I can pack some weight back on, that the doctors can make things stop hurting and after that, well who knows? I know I have been a horrible, spitty, scratchy nightmare in recent months (exactly like the bloody kittens at the moment) and I’m sorry for that. Really sorry. It’s not me, I hope people close to me know that.
The title of this blog is the from a song written by one of my favourite bands, Field Music (I think I may have mentioned – repeatedly – that Dave from the band [who has now become a bit of a pal, along with wife Laura] sang at our wedding, and no I’m still not over that). “At last a gap appears, a space in which to move” and it kind of feels like that now. Those horrible dark clouds are still there a lot of the time but a gap has appeared and there is a little more room to move. Even just a bit and that’s all I needed really, the tiniest bit. With scan results due, I know I could be in for a tough time again fairly soon but I now know I’m not having to do it on my own. Not all of it anyway.