tiltingheads

Cancer and other stuff

Archive for the month “February, 2013”

Hello!

Well it’s been quite a week and a bit but I thought it only fair to say ‘hello, I’m still here, and we’re still doing ok.’ And maybe even share some of my thoughts during this, the most bizarre of times.

First up, how am I physically? Well it’s fair to say I have a new-found respect for people who work in pain management. And I have also learnt, as if I didn’t already know, that cancer is bloody wiley. It’s not quite as easy as pop a few pills and bing! no more pain. It’s really quite difficult to get the balance right – much pain medication makes you sick, or the dose isn’t quite right, or it works for a bit then some other random pain will pop up that needs dealing with, or you get your pain nailed but the cost is you can barely speak with exhaustion as a result. And I am not prepared to let go completely and risk my faculties going before they’re ready to go on their own by pumping myself full to the brim of heavy duty drugs that mean I miss out on this last bit of clarity when so much is becoming clearer to me, on a daily basis. So much of this I would never want to miss out on, in many ways it’s the most incredible part. Being able to say goodbye with love, without heartbreak or panic. Being able to fully reflect on your life and the wonder and delight when you realise that, at the very end, when it really mattered, you did everything right. I DID IT RIGHT! ME! Who, for so many years, thought she would never get it right or be happy, because life was inherently shit and I had so much to be miserable about, and the world owed me a living, grumble grumble grumble.

It is the weirdest feeling to know you are dying, to feel it, to visibly see it (there are lumps popping up in a few places and I am now ‘medically anorexic’ due to the weight I have shed, although a well-timed dose of steroids is helping immensely with bringing my appetite back) and be OK with it and not be completely freaked out. I have been trying to think of a way to describe it without sounding all ‘far out … it’s a beautiful thing maaaaaan’ but it’s quite hard. Obviously I am not loving it, but weirdly I feel calmer than I have done in my whole life. And I know, without a shadow of a doubt, that the reason I am able to have this last part of my life with nothing but peace and love (maaaaaaaan) is because I accepted what was going to happen to me a long time ago. I was never the type to run away, I never pretended it wasn’t happening though I really, desperately wanted to, I never genuinely believed that some miracle would occur and magically take it all away. I obediently did all the drugs I was supposed to, I endured the hell of chemo over and over and over and I kept going because I was told this drug or that drug might make a difference. And over the 2.5 years I had secondaries, some drugs DID have an impact but it was never for very long. But I was always realistic and many times, that was mistaken by people for being ‘negative’. Which hurt, a lot. So many times I felt like I was constantly having to explain myself, so many times I was dealing with other people’s inability to deal with what was happening. I get that, unless you are faced with your own mortality, why would you think about your own death? I never did before I got cancer. And I didn’t even think about it when I got primary breast cancer. It never occurred to me I could die first time round, not for a second. I just had some chemo and thought that would be it, because in the majority of cases, that IS it. Survival rates in breast cancer are good, more people never develop the disease a second time than do, and even fewer actually die of it (I think). I was more bothered about losing my hair (and I stand by that and say losing your hair is the shittest thing ever. A mastectomy was pretty small fry for me, I had a decent reconstruction and no-one need ever know the difference. Hair is different. It’s like walking round with a badge, declaring you have cancer and inviting the world to tilt their heads at you. Awful).

All the time, all I ever seemed to hear from some people was the standard ‘think positive…keep fighting’ and I was and I did, but not in the way people wanted me to apparently. What do people even mean when they say that anyway? Do they think it’s possible to positively think your way out of anything? When they say, ‘keep fighting’, fighting against what? And how? How can I ‘fight’ cancer on a physical level? If I could have thought and wished it away, I would have done 100 times over and so would many who have gone before me but it doesn’t work like that generally. My way of thinking positive was just to continue to live my life even more than before, to stay working, to retain who I was as opposed to just the cancer patient, to get on with things, to go out and find my man and marry hime when all the odds were stacked against me. Not once did I roll over and crumble and give up on my life. Yes, so much of it was hard. There are so many ways in which your life changes but I decided I could either sit and feel sorry for myself, or I could just try and get to a place of open-minded acceptance. And when things seemed desperate and hopeless, during the times I thought “I can’t do this, it’s too hard”, when I was angry at the world and everyone in it.. I dunno, I just somehow kept plodding along. All the time with an understanding that yes, one day, this would be the thing that killed me but as long as it wasn’t happening that day, I was alright. Trying to explain that to other people, trying to get them to understand that actually, I wasn’t prepared to spend my life being so scared of death that I would keep blindly running from it. That was tough, some people physically recoiled from me when I tried to speak about it so largely, I stopped speaking about it. But I carried on thinking about it and exploring it which led to lots of bigger questions about life and stuff and helped me make changes to my life that have ultimately led me to become the person I am today. The person who is face to face with her death but doesn’t hate it, we’re not squaring up to each other like in a duel, it’s not a stand-off and it’s not painful. It’s a realisation that we are all human, our lives are just tiny parts of what is a massively big world and I am so incredibly lucky to have had the time to sort some stuff out in my head, really understand what it’s all about, be at peace with it and to have done the things I have done over the last couple of years. I have absolutely no regrets. There is nothing I wish I would have done or said. Andy and have this time now to talk about EVERYTHING, even the stuff we thought we never would discuss and I leave him with no regrets either which is the main thing. I can’t stand the thought of leaving unanswered questions for the people I love. What ifs? There will be no what ifs, no stones unturned. I leave everything exactly as I wish it to be and my family and friends can see that, for possibly the first time in my life, I am really, honestly, genuinely peaceful. And glad to have had the life I have had, mistakes and all. Which hopefully makes the grieving process easier for them too.

On a practical level, because I was prepared to accept it a while ago, I’ve got an incredible palliative care team around me that I have known for a long time now. They know me, they know what’s important to me, they know the kind of person I am and I have absolute faith that when the end comes and I have no control they will know what to do because we have discussed it. Plenty of times when I was well and it was all just a mad theory and not very really at all. Andy knows who to call, when, what the protocol is, what will happen and we have absolutely covered our backs as much as we can. I have possibly the best palliative care doctor leading my care now, who has become very close to me, and I cannot imagine how horrific it would be to try and start that process with a whole new team now. It’s March soon and you will see daffodil badges everywhere for Marie Curie’s appeal. Please please do buy one and support them, I cannot tell you how much easier they have made this whole thing for both me and Andy.

This is probably the worst written, most poorly constructed blog I’ve ever written – sorry – but I suppose what I want to say is, I didn’t run and because I didn’t run I’m not afraid, and because I’m not afraid, I can sit here now in peace and that is all I ever wanted.

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Another blog? That was quick

OK people, I’m going to keep this as brief and as factual as I can for the moment – again the blog comes into its own when having to keep people informed when there are big developments. Hopefully you are sitting down? Good.

Yesterday I got my scan results which revealed that the cancer has spread far and wide, fast. It’s now moved to my spine, ribs, adrenal gland (no, me neither) and liver and probably more places. The fact they are not telling exactly how much (just ‘a lot’) or where exactly (just ‘in a lot of places’) speaks volumes – it’s unspoken that it’s not good and I have been told my time is now limited. I don’t know what timescales we’re talking although I suspect, based on how bad I’ve been feeling for quite some time and how quickly it’s come on, that I will be lucky if I get another couple of months, at best. I’ll be starting on a drug which protects your bones from the cancer, helps them stay strong so the risks of fractures and breaks is lessened. Thankfully this can be given at the hospice in Hampstead where I’ve been going for a long time, and where I feel safest. I don’t think there is much point in being in the hospital any more and I don’t really want to sit in ‘the chair’ surrounded by people who are having chemo which is aimed at making them better when I have no such hope any more.

Clearly we are both stunned. And yes, devastated. BUT I always knew this day would come and I’ve been lucky to have been as well as I have during all this time. As in my previous post, I did so much for so long and that was great. And in a way, I’m almost relieved. I have been feeling so bad for quite a while and I kept trying to explain it away as something else and hang on to the thought it was just a blip and I’d start to feel better, very soon. At least now I know I wasn’t actually being a baby about the pain, or imagining it. There was something very wrong the whole time.

There’s a lot to do and think about now but I just want to assure everyone I’m as ok as I can be. I’ve had plenty of time to prepare and I’m so, so grateful that I had the opportunity to do a lot of ‘sorting’ well in advance of this day and there is nothing I have to rush out and do because it’s already done and was done a long time ago. Now I just get to enjoy the time I have left with my family and friends. And we get to laugh and remember all the amazing times we had, and start saying our goodbyes, making sure nothing is left unsaid. I’m glad for that, so glad. Few people get that chance and the people I leave behind can hopefully draw some comfort in the fact they always knew how I felt about them and that I died a happy woman because of the man who captured my heart from our very first date.

I know this is probably hideous news for a lot of you reading this but the last thing I need is sadness all around me, there’s time enough for that when I’m gone. In the meantime I intend to buy outrageously expensive new boots, cuddle the kittens till they can’t breathe, laugh laugh laugh as hard as I can and bury my face in my husband’s armpit at any given opportunity (he’s so tall and I can’t lift my head at the moment as my neck is mega sore. And actually it’s the very core of him I want to breathe in, every second of every day I have left).

I am not afraid of dying. Not any more. Me and death will be just fine because everybody dies, it’s what happens. I haven’t gone yet, I’m still here. With a sense of humour and a personality and a very clear sense of who I am which I never had pre-cancer. And that’s a gift in itself.

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.

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