One small thing at a time.
It’s currently 7:30 a.m. on a beautiful October morning and I am sat on the bed trying to get my breath back after the epic exercise of – walking upstairs. Things are not good at the moment.
I actually write many more pieces than I publish which often end up languishing in a folder un-posted for two reasons: the dreaded imposter syndrome and balance. When writing about something like incurable cancer it can feel hard to strike the right tone: write when things are absolutely awful and it’s too much for people, write in a light-hearted manner and it perhaps doesn’t ring true.
The last piece I wrote and didn’t publish I talked about trying to find a way to a good death. I will come back to this. But first an update.
Things are pretty bad right now, in fact the worst they’ve been so far. This comes as an added blow as the downwards turn has come hot on the back of what was, for a month or two hope that we had found a chemotherapy that was working towards maintenance of the cancer. Spoiler alert, it stopped working and the cancer is having a swift surge return and growth. I am back in a lot of pain and unable to move my head much. I have so much swelling in my neck now that it is hard to swallow and breathe. I do not look like me from all this swelling and I have almost completely lost my voice and so I do not sound like me either.
I have to admit, I am finding it all a bit hard at the moment. When I look in the mirror and see something so alien looking back, when I open my mouth and barely anything comes out and being unable to do anywhere near as much as before without being wiped out and gasping for breath, it’s hard to not wonder – just what is left of ‘me.’
I feel I am being stripped away, unwillingly, bit by bit and I find I spend an awful lot of my resource just putting my mind to trying to deal with this, to decipher who I am anymore. There are days where it is too much and I find myself among the huge waves of grief that feel impossible to navigate. Other days I am able to look at it all with a strange detached curiosity. Let things come, let things go – I must say this fifty times a day to myself. One small thing at a time.
‘Okay, what can I do, then?” is how I am trying to learn to steer myself from being just a great big wet puddle of despair and who am I? “What can I do?”
On a practical note – not as much. I have to rest a lot more and some days it is as basic as; get myself washed and dressed and cook the main meal of the day and if I’ve achieved that, it’s a win. Other days I manage a little more. I have terrible feelings of guilt about contributing so little to the house these days, it’s something I can’t shake off having always worked and done my fair share before: let things come, let things go. The guilt feeling won’t give me more energy to change things – I attempt to release.
I am unable to sing with my singing group, but we have been meeting for so many years now, and as we say, we are more than just a singing group because of it, that, energy permitting we still meet but craft instead of sing. It is not the same, of course, but we get to see each other and be creative still, just in a different way.
But what of ‘me’ and my place in this world when everything is getting smaller, closer, more restricted? Well, this. I can still write and I have always promised that I would write truthfully about what I am experiencing in the hopes that it may further understanding and discussion about what is somehow still quite a hushed conversation.
Yesterday was a Big Grief Cry day. Today I am able to mentally stand back a little and think with curiosity. Warning, I shall now talk about death – and life.
I found myself a few weeks ago trying to explain what I meant when I said “To have a good death I think you need to find a way to be at peace with it happening.”
I was in the middle of a couple of weeks of all-consuming grief. Having thought that things were going well with treatment and then finding new cancer, I was suddenly unable to pull myself out of a huge low and yes, my thoughts did begin to focus on my death. I know a lot of people won’t want to hear that, but it is a reality and to deny it would be to be untrue.
I am not afraid of being dead or what comes after. I am afraid of the lead up to dying. And the thing of it is; I just don’t want it to happen. I’m not ready. I don’t want it. There is too much I love in and about this world for me to want to leave it.
I find that I get glimpses of truths, intangible, often slightly just out of reach bits of knowledge or belief that I catch small pieces of before they melt just out of fully holding. But there are things that feel certain and right and true sometimes.
One of these things is that we know that everything of the natural world has a vibration, an energy. I believe that our natural state is to give and live with positive energy and I think that is how we need to die too so that the vibrations we leave behind are kind and gentle and our passage from this place to whatever comes next is a positive one.
But this throws up a conundrum for me because the idea of being at peace with dying makes me feel like I am betraying the ones I love. It would be like saying I am okay to leave them – and I am not. I still rail against this. I don’t want it. I am not ready. (I can hear my Darling Husband interjecting now in my mind saying that I am jumping ahead anyway as no one is talking about being at that place yet – and he is right, of course.) So this is where I find myself being pulled back and forth between believing I need to find peace and not wanting to yet because it feels like I’d be saying it’s okay.
I guess I am talking about these things precisely because I have always said I want to talk truthfully about it all and let’s face it, we humans are dreadful at actually addressing this subject in any way other than flippant throwaway comments.
I know it makes most people feel horribly uncomfortable but maybe it would help us all if we really could find some peace with these thoughts sooner rather than later.
So, what can I do? I will try as hard as possible to leave pockets of positive vibrations wherever I can. Maybe with these posts, with my nature writing newsletter, by sending a loving message, by tidying just one drawer in the house. Some days it may be that I am having a bed day, but I can still focus loving thoughts out into the world. These may seem like the tiniest of things but I truly believe that if we all lived this way it would have a huge impact on the world. Ripples of love and positive energy would flow out in concentric circles reaching far wider than we can imagine.
From everything I have heard, learned, the things I feel and those glimpses of truths that dance just in sight but a little out of reach, I would like to offer the reassurance that I really do think that the final act of dying can happen in a positive way and with peace and I think that peace is found in the life we live up until that point. So fill your world with love, kindness, fun and curiosity and I believe it will all be okay in The End.
P.S. Despite the subject matter above, I’m not planning on going anywhere anytime soon. I am starting a new chemo this week and will not give up hope. X
P.P.S. October is Breast Cancer Awareness month and so perhaps I will try to post more pieces throughout it. I am always curious as to what people want to actually read. Is it the truth, as above or do people just want to hear the edited highlights that you see on most cancer adverts that to me do not represent the enormity of it all, but put a shiny veneer on the subject – the old, fought the battle and won now I’m completely new person story?