Tag: dying

Coming up for air

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I’m beginning to see the light at the end of the tunnel. My cousin Faith visited recently, bless her, pointing out how my life has become one of super-concentrated uncertainty. It’s funny, when you’re caught up in the intricacies and subjectivities of your own life-bubble, how a simple observation like that really helps see things more clearly.

I’m on cycle five of a planned six cycles of chemo and steroids and am expected to plateau at a stable level when all the intense treatments I’ve been having end in April. My readings are still improving.

At the three-weekly meeting with the haematological specialist, Deborah, I asked whether there would be follow-up drugs and she said No, none at all. That was a surprise, but it now frees me up to design my own myeloma self-management regime, so it feels like a release. But into what? Swimming in a sea of uncertainty, hazard and possibility.

It’s a challenge to maintain a good state of being and spirits. There will be periodic blood checks to make sure my myeloma levels haven’t risen and, if they do, I’ll go back on chemo and steroids if necessary and if it feels right. I hope to delay that through good self-management – and we’ll see how that pans out in real life.

Bone marrow cancer doesn’t go away – you just get minimisation. Myeloma or a related issue will eventually do me in. If I’m one of those unfortunates to catch coronavirus and kick the bucket, then there will be work to do Upstairs with others who die, who are perhaps struggling, unready for death-transition – helping them get their relationship with their soul sorted out. So all is not lost.

But then, every one of us gets done in somehow, sooner or later. So, when Life does you in, do it well! It’s one of the great breakthrough opportunities Life gives us. Screw the workshops, trainings and books – this is for real and it comes for free.

I’ve treated this bone marrow cancer as a spiritual challenge, but it’s very much a human one too. I’ve been digging around in all the fears I seem to have, and they’ve been digging me out too – there will be more.

Mercifully, I don’t get depressed. When I was young I had terrible dark depressions until I realised, during an inner journey, that there’s always a lump of gold down there in the dark depths. I met the dragon guarding the treasure, knowing it would annihilate me if I were afraid. Yet somehow my depressions had made me more fearless, making me give up on many customary defences and attachments since they seemed to do no good. Suddenly I saw depression as an asset. Since then, things have been different: depressions have transformed into times of interiority where I go quiet – unsociable and shut off to some – and it’s often a creativity-cooking period. A time for meta-processing, preparing the ground for breakthrough.

This chemo-induced tunnel I’ve been drifting through recently has been weird and difficult. I would have been depressed if I were inclined that way. Fatigue, spaced-outness, a kind of dementia, feeling I was getting nowhere, feeling of lack of progress and perspective… but the end is now coming into sight. When this intense phase of chemo ends in April or May I shall move back down to Cornwall.

And start again. Again. Much of my preceding life has been zeroed, and now I need to find a new level that works, for whatever time I have left. A life-redesign.

Guess, what, after that down period, my body has made a breakthrough. I can now stand unsupported for a longer time and walk short distances. It’s like going back to toddlerhood – the moment when you start standing up. It’s not a gradual process – it’s a sudden overnight activation of circuitry that allows you to do all the necessaries to make you stand and walk. It’s suddenly there, as if you’d always been doing it.

Talking of uncertainty, I’ve been thrown into it and now I’m watching the world getting pushed that way too. Despite the best efforts of those addicted to the status quo and striving to preserve it, things are slipping out of control, and this is symbolised by the coronavirus outbreak. We’re helpless whatever we throw at it, in the hands of fate. We actually need this – collectively at least. Blessings to those individuals, particularly doctors, nurses and helpers, who pass away – they make this sacrifice for us all, though it is meaningful only if we actually change and learn lessons.

We need this loss of control. There’s too much feigned certainty in our world and it’s a defence mechanism, a wall of groupthink denial. It needs to melt and break up faster than the icecaps of the Arctic and Antarctic. We need to lose our fear: and the fear epidemic is growing larger than the coronaviral epidemic. Fear, guilt and shame: in these three big blockers of global progress, the personal and the collective interlock through groupthink.

But we humans… we have a determined need to stage a “Final Clearance Sale – Everything Must Go!” orgy. It’s a perverse unconscious wish for what Mahatma Gandhi called satyagraha, truth force, the power of consequence, of inevitably, unavoidably changing facts. Something to stop us in our tracks, giving us an epiphany opportunity. To get through the 21st Century, we need this to go viral. It needs to rock the hearts and souls of billions, at the same time and with one underlying, shared thought and priority. That’s how the world will change.

Some of us have worked with this question for decades and we haven’t yet pulled it off. How it will happen has, in the last decade, looked more difficult than it did in, say, the late 1960s or around 1989-93. Another window opens in the later 2020s, driven largely by a younger generation – whom my generation would be well advised either to assist or to get out of the way of. We oldies have to get used to less comfort. We don’t actually need chocolate and holidays in Tenerife to be happy.

The astrological conditions of the late 2020 (a mutual sextile of Uranus in Gemini, Neptune in Aries and Pluto in Aquarius) could be given the description ‘florescence‘, a flowering of ideas whose time has really come and an overdue rising to the surface of what was underneath. The past suddenly becomes visibly obsolete. This could go either way – toward social control or mass-empowerment – but there’s a window of opening soon.

It’s getting rehearsed right now with coronavirus: the issue here is firm, appropriate, good governance and leadership under conditions of duress, and the key issue is public trust, discipline and intelligent behaviour. Accountability applies in every direction – we must give leaders the power they need while we, the human crowd, retain the power to determine key issues. But we must do it wisely, pulling power back also from extremists, spoilers, corrupters, fighters and advantage-takers. Public wisdom is the big question.

It’s rather like that toddler standing up for the first time, as if it were a habit that always had been there. It will be like that. We saw it in the Velvet and the Arab revolutions – remarkable acts of crowd bravery, discipline and good behaviour. It was damaged and corrupted only by the tear gas and bullets of the authorities – and this can be stopped only when satyagraha, the truth-force of what is really happening, overwhelms the habit of repression.

Dare I say a politically unwelcome truth, we have a well-habitualised addiction to being repressed – the threat of loss of this addiction gives us our fear, the fear of being unable to pay our bills and so being exiled from normality and security, all alone, shunned, helpless and wrong, a sinner who failed.

It’s in those darkest times that the buildup of truth-force happens – and that’s the meaning of our time. The Trumps, the conservatives, the warmongers, the toxic males and rampant capitalists have won. But they haven’t. They stand on precarious ground. It’s in the balance, right now. Something is building up.

When I was young, I made a vow that I’d do my best to help bring the world to an irreversible tipping-point of change in my lifetime – only then would I feel ‘mission accomplished’ and the release it brings. Since around 2000, growing older and seeing how the world wasn’t really, fully changing, I let go of this, transferring my efforts to work that might bear fruit posthumously.

But while I’ve recently been facing cancer a glimmer of hope has revived in my heart. It gives reason to stay alive. I want to see it and contribute to it. An ageing old crock of a dissident can do it just as well as a youngster. Come brothers and sisters throughout the land, the times they are a-changing.

An old friend and soul-sister, Sian, is taking me home to Cornwall next weekend for nine days, on a reality-testing mission to see how well I cope on the farm. Lynne can have a break from me. Sian and I have worked together for over 20 years in a tight group called the Flying Squad, doing ‘world work’ – consciousness work and group process to work with the underlying issues behind world events. We’ve been through a lot together, and her offer to take me home and through a reality-initiation is a magic initiative.

That’s what happens next. In gradual jumps, I’m coming back to life, returning from the bardo.

Thank you all so much, who have sent me healing and good vibes to help me on my way. I really appreciate that. Thanks also to Tomten the cat, who has slept dedicatedly on my bed, at times lying on my most painful parts and acting as an amazing pain reliever. Thanks to the amazing nurses and doctors in Torbay – remarkable people working within a very complex and rather screwed up health system.

Above all, thanks to Lynne, who has busted a gut for me, borne a heavy load and worn herself out looking after me. That’s amazing. She has been a star. Something like that can never be repaid. There’s an enormous life-lesson in that, for both of us.

With love, Paldywan.

Another Fullmoon

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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.

Nearly Went

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I did wonder whether I would make it through the night. In the 1990s I was editor for a publisher called Gateway Books, and we did a book called Today is a Good Day to Die. In the middle of the night, struggling for breath, it felt a bit like that. If I really had to go, this would be a good night to do it. But then, in the deep dark of night, sometimes it feels like that.

I had caught one of the throaty infections that are going around at present. With my immune system suppressed, as a necessary part of my cancer treatment, such an infection could kill me.

During the week I had been labouring. My spirits had been subsiding. Indistinct feelings, hovering between hope and despair, were bugging me. I had been looking ahead to the possible years to come where keeping my spirits up, no matter what, would be a key issue. If I felt bad or were faced with too much adversity, my health could deteriorate rapidly.

I was concerned about money, going back home to Cornwall, care and support issues… and one big, inevitable question. What kind of plans can I make? “Take it one day at a time”. Well, yes, but people and authorities want plans and timetables. When can they visit, when can I do an astrological session, can I take them on an ancient site tour next September? Um, the answer is, I really do not know!

In the morning, when Lynne came in, she was really worried. I was ‘out of it’, wheezing for breath and a shadow of my former self. Poor Lynne – I’m putting her through such a lot. She called the hospital. Anticipating possible sepsis, they called an ambulance. Bring him in. Quick.

The ambulance guys were great. They exuded competence and calm. One of the paramedics was in training, and I was impressed even with him. They listened to my lungs, took blood pressure, asked questions, tapped on their rather amazing mobile computer… Then the main paramedic decided it would be safer, given the infections that are rife right now, for me to stay at home rather than to go to hospital. Indeed, that made sense, but it was a bizarre truth too. There I was, ready to get whisked off to Torbay hospital with blue lights flashing, dressed in my Arabic jalabya and slippers, and suddenly I was back in bed again!

I was prescribed antibiotics, which Lynne later got from the local pharmacy. I don’t like antibiotics. But they are an integral part of the cancer treatment, counteracting the immuno-suppressant chemo and steroids. It’s a brutal system of medicine, but this is what was available when I was diagnosed, back in November. There was no holistic GP or hospital to turn to.

This sad fact goes back to the 1970s, when wiser heads could have adopted an integrated medicine approach to healthcare rather than suppressing complementary medicine and denying it facilities and funding. Had they done so then, we might not have the health and social care crisis we’re having now. It concerns money, politics and social control.

A holistic approach to myeloma would interest me but, in my current condition, I’d need proper supervision from someone who really knows their stuff. I’d need to pay lots for it and I’d need an emergency fallback system, as was needed yesterday. Also, if it involved fasting, forget it, because I’m already down to 60kg (9.5 stone) – there isn’t much of me left to detox! The only person I’ve found thus far who has specific knowledge of bone marrow cancer is Chris, a homoeopath who also has myeloma. But he’s going through the mill too, poor chap. Meanwhile, being treated remotely online without examination by someone in Oregon or Germany doesn’t quite give me confidence.

The paramedics left, and there I was, back in bed, with the fullmoon about to rise behind the hill outside the window. Quite a humdinger fullmoon lining up with Saturn, Pluto and Mercury for a hard-facts, gear-grinding, seismic few days of intensity that are part of the larger Saturn-Pluto conjunction happening at present. Not an easy time – except perhaps for viruses and their propagation needs.

I had a privileged glimpse into the dying process last night. When you approach the moment of death, the world narrows down as if like a funnel to squeeze through, and all the ten thousand things we normally concern ourselves with evaporate into irrelevance. The issue simply becomes taking your next breath. That is, until that ends too. You step through, over the threshold. Suddenly, a big, wide space appears – light-filled if you choose to see it that way. There can be feelings of relief and release.

It’s easier than you think and it’s important not to struggle against it. I know this because, when I was 24 I had a near-death experience. I went to the Pearly Gates and the Guardian told me, “Sorry, not your time yet”, but he took my friend Mike. So I came back, minus most of my childhood memory. I had been unconscious for nine days.

Life is precarious for the best of us, but cancer has brought me closer to the edge. I’m in a myeloma Facebook group where new entrants join, saying they were diagnosed just last week. But also people leave. Their carer comes online to announce that, sadly, their ward died two days ago, so they will now leave the group. It must be one of the more profound Facebook groups around. The solidarity is immense.

Yay, I’m still here! I’m more ‘with it’ today. Lynne was able to leave me alone (with tea and flapjacks) in order to go out shopping – and I hope she finds a friend to hang out with. She is so good to me, looking after me so caringly and tolerating me. It takes its toll on her. A sign at the hospital says that unpaid carers like her save the government £18,000 per year. Well, that’s good. But she is getting zero support herself for doing so. If she pulled out, the price-tag for professional carers and other issues would sky-rocket.

More another time, inshallah. ‘Inshallah’ is a useful word. In secular English it means ‘with luck’. In Arabiyya, the Middle East, it means ‘if it is the will of God’, and whenever they make a statement about anything, they tack the word onto the end of the sentence. It’s a statement of realism. It acknowledges the role of the Great Unknown in our lives.

God bless you all. Still your friend, still here. Palden.