Month: January 2020

Rejoice

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I managed to walk about 500 metres on Sunday. We drove up on Dartmoor on a bright, cold day and I staggered along over the close-cropped grass with my walking frame. I didn’t expect to reach my goal – a gateway over the field – but I got there, and back too. That was a great achievement!

It’s funny how a susceptible and weak state like mine can produce a sense of immense gratitude for small things. Afterwards, Lynne and I sat in the car with tea and blueberry biscuits and I was happy to be alive – though my back was aching and I was thoroughly shagged out. This morning, sharp stomach pains brought up leaking tears of vulnerability and, grasping Lynne’s hand, I felt so grateful for her presence at that moment. It must be worrying for her to see me in this state.

At present, as far as ‘getting better’ is concerned, it’s ‘mixed signals’. I’m in a long tunnel, experiencing complications and drug side-effects. ‘Perseverance furthers’. Only ten days ago I was struggling to stay alive, with an infection. As part of the cancer treatment my immunity is by necessity reduced, and one kind of generosity I don’t want is free donations of infections! Especially from the lax teenagers living in and visiting this house, who see the quarantine restrictions placed on them as an infringement of their rights and freedoms.

On the other hand, my medical results are good. Para-protein levels, 40 two months ago, are now down to 7, and light chain readings, 2,000 two months ago, sank first to 350 and now to 134. Don’t ask me what those terms mean, but it’s encouraging. The aim is to stabilise as close to zero as possible.

The cancer specialist I’m with said something interesting: the average family doctor meets up with only two or three cases of bone marrow cancer in their whole career, so they can fail to diagnose it. A week ago, when visiting hospital, in the corridor I saw the Indian doctor who had been called in by a junior doctor when I was first taken into A&E in November. He had stood there looking at me thoughtfully, then saying “Test his blood for myeloma”. This was an act of inspired intuition, considering that my main symptom was a lower back injury. When we met in the corridor last week I thanked him for that. Good man: he had zeroed in on a rare condition that wasn’t easy to spot.

After stabilisation comes another phase. I’m inclined not to go for a stem cell transplant, the standard procedure for most myeloma patients, though I’m not fixed on that yet. It doesn’t feel right, and I trust my intuitions. I don’t get the feeling that the price – a few months of debilitation and sickness – will yield the benefits some people get from a stem cell transplant – a form of remission that, for younger people at least, can last a few years. One successful transplant graduate on our myeloma discussion group said he enjoyed not having to take endless pills after his transplant and this indeed is an incentive, but I still don’t feel quite right about it.

Bypassing the transplant means taking on a challenge to monitor myself and maintain a good condition, with the chance that I might have to return to bouts of chemo and steroids if things worsen. It’s the low-points that are crucial. However, my advantage is that I’m starting from a different starting place from many cancer patients – I’ve had a different life and I haven’t fought against myself as much as many people do.

paldenShipleyBridge-45573Sure, I’ve beaten myself up with fear, guilt and shame in my own way, but generally I’ve learned and moved forward from there, whatever my resistances. This does pay off. Yet I’ve still been hard on myself, workaholicky and living intensely, and now I have bone marrow cancer.

Radiation exposure (nuclear and mobile phones) seems to be a key cause in my case, but there will surely be deeper roots to it. It’s also a matter of how we choose to see things: is this cancer something wrong with me, arising from lifestyle or toxicity issues, or has my soul given me a late-life gift by forcing me into a fundamental spiritual and emotional initiation? The best answer is probably both, and it’s what you make of it that matters.

In my life I’ve been close to death a number of times, in illness or in risky situations in conflict zones. Each time, coming to rapid acceptance of the full situation has turned something around, deep inside. It has allowed my will-to-live to take charge if I am ill or, if I’ve been in a dangerous situation, to help me stay calm and simply get out of danger. These edge-treading experiences have helped me deal with my current tenuous situation and I’m grateful for that.

It’s remarkable how life prepares us in advance for challenges it brings us later on – as if it knows something. As if the past, present and future are not as linear and sequential as we like to think. “Spirit has a plan“, my old humanitarian friend Pam Perry used to say, “but the conundrum is seeing it“.

In choosing to have no transplant – in which they draw stem cells from me, clean them of cancer and then pump them back in to stimulate a revival of the blood and bone marrow – I’ll be taking on a challenge to maintain health and spirits. I’m not 100% there yet in terms of commitment to this path, but that’s the way I’m going unless persuaded otherwise. I must get myself totally behind this strategy if I want it to work.

There need to be good motivational reasons for staying alive too. This process has already started. I’m writing a book about the ancient sites of West Cornwall, where I live. I’m suggesting that the subtle energy engineering the people of the neolithic and bronze ages engaged in, building quoits, stone circles, standing stones, barrows and sacred enclosures, had a corrective effect on the land, climate and themselves that we need to learn about today. These ideas aren’t entirely new but I’m taking them much further. There will be opposition, yet I feel it’s necessary to present the evidence and state these ideas without hedging, in the hope of jogging the discussion forward.

So this is stage one of a new life-strategy. The next quandary concerns my humanitarian work and the extent to which it can continue. Much of it is done online nowadays but there can be intense moments, worries, costs and issues nonetheless. I miss friends in Palestine and would love to visit the Tuareg village in Mali that I’ve worked with, but such travel might be beyond me now. I might just have to come to terms with this. But I’m open to surprises.

Big ideas, insights galore, loads of pills and a good dose of back pain – a strange combination. Slowly getting stronger, I’m shocked at the extent to which my muscles have shrunk and my body is frail. When I was 15-20 years old I was an ace mountaineer and cross-country runner! Was that in another life? We think of our existence as a continuity, as one life stretching between physical birth and death, but perhaps it is not. I could count at least five lives since I was born back in 1950. The life I have now is so different even from just a year ago when I could still roam the cliffs of Cornwall – something no longer on the agenda.

“Rejoice, rejoice, we have no choice but to carry on…” sang CSNY decades ago. Just gotta keep going. That is the way of things. Treat each day as if it’s the first and last day of your life‘ – I used to try so hard to observe this maxim, but now it’s becoming easier!

Love from me, tapping on my laptop here in bed… Palden.

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.