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.