It was the nurse Victoria who delivered a valuable truth. When I asked the doctor about my prospects – and whether and when I’ll get my brains back – he fudged. But Victoria, sitting behind him, came in to say I shall return to a new level and it will be different, and I must accept this. It will take a few months after completing chemotherapy for my brains to return, and they won’t return to what they were before.
I’ve been getting a secondary wave of realisation that my life has really, really changed – and the extent to which this is so. It has brought a sense of loss, but something else has been coming up in its place. I’ve made a decision. I’m taking life in my hands, and I’m going to take on a self-management strategy rather than have a stem cell transplant – the default treatment that seems to work for many people, mainly younger than me.
In my own case, a strong intuition tells me a transplant will either not work or it will bring no advantage. After such a transplant – where they take stem cells from your bone marrow, clean them and pump them back in – it also involves 3-6 months of dependency on relatively intensive care to get over it. In many cases it gives some years of remission. In my case I don’t get the feeling I shall have that payoff. Some people just get six months, and some people die from the procedure. Besides, I can’t realistically manage up to six months of dependency on care – I want to get on with life to the extent that I can.
So I’m choosing another route, an integrative medical route that is partially medical and partially holistic. This has its risks, but so does anything, and it seems to me I can do at least just as well with it as with a transplant. It will be a challenge to monitor and look after myself, drawing healing through my soul, and to be willing to go back on chemo and steroids if necessary.
Few people take this choice voluntarily. Most people take a self-management route only if their condition prevents them from having the transplant.
I have between one and ten years to live, I guess. I want to die well, whenever and however that happens. I’ll stay around until my useful life is done – and then I shall go in grace, inshallah, if life permits this! Since shit also happens. But I think my chances of doing this are greater if I take life in my hands, and it will be my own choice and responsibility.
I shall not be returning to where I was before. For both Lynne and I, my contracting bone marrow cancer was not part of our plan, but it has happened anyway. Facts have overruled everything else. To some extent this is harder on Lynne than on me – it’s really hard being a voluntary carer and there is little support for them.
But I now have a new life: it brings new possibilities amongst the constraints I’m served with. Not least the threat of death, of accepting the Great Unknown like I’ve ever accepted it before. But that opens up possibilities. The edginess of mortality sharpens life’s issues, making every moment a bit more poignant.
Life is a preparation for the moment of our passing.
This said, I’m becoming a bit more capable every few weeks. It’s a long, slow process. My back still cannot support me for more than a minute – enough time to get an item of clothing over my head before I need to hold myself up again! It’s amazing how an experience like this renders small issues, such as going to the toilet, into a big event. It has made me feel grateful for small things – a biscuit, a walk on the moors, a close time with Lynne, a phone chat with my son or hearing about what’s happening with my faraway daughters and their families.
My readings are good. I’m not sure exactly what these mean, but my light-chain readings have gone from 2,000 to 350 to 134 to 103, and my paraproteins have gone from 13 to 7 to 4.9. So in haematological terms, I’m doing well. But the hospital is tending to ignore the other aspect of my condition, physical disablement – this side-effect of myeloma derives from the collapse of two lower-back vertebrae. Unless stopped, myeloma eats up your bones, and this is what has happened. Luckily, I have a really good cranial osteopath, Simon, who is helping me with my back.
I’ve been learning about fatigue. I just can’t manage sometimes to follow through on a conversation. I can shower myself but drying and clothing myself is a step too far. I have new limits. I get totally worn out. There comes a point where I just zone out with exhaustion, having crossed that limit. There’s nothing much I can do about it. It’s a big lesson in acceptance.
My goal, to be able to walk to my favourite power-point, Carn Les Boel, over three miles of rough though inspiring clifftops, might never be achieved, but at least I have a goal to aim for. It’s a place where, as the Yaqui sorcerer Don Juan once said, I could dance my last dance, with the ancient spirits and the Atlantic winds as my witness. But I’ve been there enough times to be able to dance that dance by inner visualisation. I’m still determined to get there though.
It’s funny how, in some respects, I learned everything I need to know in my formative young-adult years as a young hippy and student revolutionary, aged 16-23ish, reading books like Carlos Castaneda’s about Don Juan, forming profound values and making life-decisions that have enacted themselves ever since in the karmic threads of my life.
Everything that has happened since then has simply illustrated the point, testing my capacity to integrate the lessons I learned – on acid trips, particularly – and to manifest those learnings in real, workable terms. Life has been a series of clarifications of lessons learned then, which have remained generally true over the spread of the decades. So do we really learn much as life goes on? Well, yes and no.
I’ve succeeded in some things and not in others – and this is what life on Earth is about. It’s a place to manifest our dreams, knowing that only some will be permitted. We as souls came here to learn such lessons and to make a contribution on the basis of what we have become. I think it was Jefferson who said, ‘it’s not what you get for doing it, it’s what you become by doing it’.
Isn’t it an amazing planetary situation we find ourselves in? Life is a predicament, yet a path of light leads through its intricacies. We’re challenged to stay true to the indwelling spirit within. Falling asleep, the default human pattern in our time, is so easy. But in the end it is the difficult path, a path of self-destruction.
As the 18th Century philosopher Edmund Burke once said, ‘For the triumph of evil it is necessary only that good people do nothing’. This sums up our global situation today. The world is sleepwalking into a big crunch of its own making. A great awakening is due. It has taken longer than my friends and I foresaw fifty years ago. And what and when is ‘too late’?
I’m thankful for the gift that cancer has given. The looming challenge of death sharpens life’s contrasts, offering an opportunity live a bit more fully. My relative disability presents a challenge but it’s doable, and I still hope I’ll be able to walk reasonably freely sometime soon. This will enable me to go home to Cornwall, and I’m so much looking forward to that.
It’s time to go – my energy is flagging, even though I’m writing this in bed. Bless you. Thanks for reading. See you again.
But then, who knows? Life is what happens when you’re busy making other plans.
Your friend, Paldywan.