A cancer update.
I’ve just had my three-monthly phone conversation with the haematologist – she’s at the Royal Cornwall Hospital in Truro. One good thing about my particular cancer, Myeloma, is that it is easily tested and monitored with a blood sample (I had it two weeks ago). So we can do it over the phone. She’s always rather brisk – the poor woman probably gets fed up of the list of calls to make through the day, and with us cancer patients and our anxieties.
Anyway, I had been anticipating bad news. Well, not exactly bad, but not good either. I was hovering between optimism and pessimism.
This winter I’ve begun experiencing a kind of stress – partially due to circumstances but also because part of me feels vulnerable and undefended. No one has my back. It takes me back to experiences I had around the age of six-seven-eight. I remember the feeling of it. I was turning short-sighted, and as an unrecognised Aspie I felt like a stranger in a strange land and a fish out of water. My poor old Mum was always busy with other things, without paying much attention, and the world seemed so big and incomprehensible, and somehow I was expected to manage with all this.
Nowadays they might call that ‘learning difficulties’ but it isn’t really. It’s not a lack of intelligence but a bit too much of it. It’s a complex Aspie perception of the world that takes longer to compute – for me, it took until around age fourteen, when suddenly the other boys started calling me ‘Professor’ instead of ‘Speccy-Foureyes’.
Part of me feels like a seven year old – feeling a need to have someone holding my hand and shielding me from that big world out there. This is quite a change from earlier times in life when I had more confidence and a relative invincibility that was calm under duress and pretty competent – I’m a Virgo, after all, and us Virgos tend to be quite calm and serene, or we tend to be neurotic. Or perhaps both at different times.
So I was somewhere between nervous and calm over this phone call. It could decide many things. One thing in particular is that the next line of treatment – I’ve exhausted two out of five now – is Thalidomide. It’s a good cancer drug, the doctors say, but what makes me nervous is this: my mother took Thalidomide for morning sickness while pregnant with me, and I was very lucky to emerge into life with all my limbs and body-parts intact. Apparently, deformed bodies arise only if the drug is taken during a certain early week of pregnancy, and it wasn’t that week for me. However…
I have Asperger’s Syndrome, and I have wondered whether it’s related to the Thalidomide I took, second-hand, during gestation. The chemotherapy I had four years ago made me wonder about this – particularly the steroid Dexamethasone. The drugs seemed to amplify my Aspie symptoms. The behavioural transition prompted by these drugs helped lose me a partner and some friends. It has become more difficult to manage some of life’s tricky social situations, or deal with bureaucracy, or insensitive people, or hackers, or modern-times complexities.
But, on the plus side, this Aspie-amplification has led to a wave of creativity, perspective and original thinking. As you might perhaps have noticed, I’ve been churning out loads of stuff – mainly in the form of blogs, podcasts and books. That’s the other side of Aspergers – the Aspie genius, with an ability to excel in certain specific interests and gifts (though not necessarily in the full range of abilities that modern humans are supposed to cover). Also, there’s a certain blindness to human guile and manipulation, making us emotionally rather susceptible to getting caught in other people’s webs without realising it.
Many ‘neurotypicals’ judge Aspies to be emotionally neutral or feelingless. Truth is, we get so flooded and drowned in feelingful impressions that we short-circuit or melt down, showing little or no responsive expression except perhaps the look of a rabbit frozen in the headlights. Or a bit like Commander Data. The picture comes clear within hours, days or longer, but by then people have formed their conclusions and stomped off, often making big, inappropriate decisions on our behalf.
Over two years after we separated, I have only recently lightbulbed a bundle of key insights into my relationship with my former partner that I had just not seen before. I had sensed it unconsciously but I still didn’t see it. While talking to a friend I suddenly saw it – the whole pattern and network of connections, events, clues, mistakes and junction-points. It’s funny when that happens – everything suddenly becomes very different. Nothing changes, but everything changes, and a healing can occur.
Yet the paradox is that empathically I understand the workings of the human psyche and human emotions more clearly than many people, though not necessarily in my own personal sphere of life. Many would interpret this as a growth blockage, a refusal to open up to my emotions, but that’s not the case. It’s just that I operate with a different operating system that computes things in a different way, and neurotypicals have some advantages and Aspies have others.
The main problem is that neurotypicals are in the majority and neurotypical culture is dominant, even though today we’re presented with a rather chaotic and multidimensional spectrum of psychodiversity. NTs tend to define the rules and, being more rule-bound than Aspies, they tend to insist that everyone should behave like them, according to their criteria.
Anyway, the haematologist quite likes me – I’m an easy customer. She was pleased (yet again) with my results. I’ve had no cancer medication now for four months and, lo behold, there is no significant change in my readings.
So suddenly I’m feeling relieved. My wobbles were just that – wobbles. It means I won’t have to go on Thalidomide for the next few months at least – and I won’t have to do the rather long journey to the hospital either, once a month.
That’s good, because it comes back to that vulnerable, undefended feeling. My fear is that my Aspie tendencies will get switched up by Thalidomide. The bit that concerns me most is that I have no one to speak for me or cover my back. There are times when I blank out and (this might surprise you) have nothing to say, at precisely the moment when I need to fend for myself. Or I simply forget about something important, remembering it afterwards, and too late. Again, it’s that eight-year old feeling where there are quite a few things you can handle, but some things are too much. You need Mummy or Daddy, or someone, to come to the rescue.
But there’s a lesson here too, in trust. Things always work out alright. My anticipations were based upon the fear that my readings would deteriorate and they’d put me on the new drugs quite quickly. I have a few public speaking engagements coming up, and some anticipation about how well I’ll do on stage if I’m on new drugs. Or whether Thalidomide would lead to regrettable behavioural changes, just as the steroid Dex did. But there was no need to worry, and everything is alright. My readings are fine.
So is Paldywan the oratorical bard. Lacking anyone to talk to, a few days ago I went up the hill to the 2,000 year old ruin of a courtyard house and recorded two podcasts on the trot. And one of them, Ascension, comes out with this blog.
There’s a funny twist I discovered recently. In 2021 I contracted Osteonecrosis of the Jaw (ONJ), as a side-effect of some pharma drugs I had been on earlier. It caused pus to drip from my chin – urgh, yuk! It made me feel horrible and disgusting and, naturally, no one wanted to come near me. I asked myself about the inner meaning of this, digging up an image or a memory of having had leprosy sometime back in history, and being rejected by society. Rejection and exile are two karmic patterns of mine. When I twigged this, it made some sort of sense – deep memory was involved in the ONJ.
As time went on the ONJ subsided, becoming manageable. Then, a few days ago I was looking up the various uses of Thalidomide and the two specific ailments mentioned were leprosy and multiple myeloma (my kind of cancer). Ah, there’s a connection. I’ve been given a clue. Clues like this can act as keys to healing. It’s fascinating how intuition can know things long before the brains catch up.
I’ve started on some new holistic remedies – the main one is Resveratrol, a specific treatment for Myeloma. I’m back on Shitake Mushrooms as well. I have started some new supplements and remedies too, including one by Detox Trading in Devon called Happy Mix – it really does lift the spirits and, with the late spring we’re having, it has helped me emerge from wintertime blues and cabin-fever.
I didn’t need to be worried about the haematologist’s verdict. Perhaps I am a neurotic Virgo after all. Though there’s something else here too… cancer has stripped away many of my defences, sensitising me to vibes, energies, situations and scrangles. There’s more emotional lava erupting as well. This makes me both more open and more vulnerable. Small things demand more processing than before, yet I’m less dulled by the very defences, built with the cement of trauma, that are designed to protect us from a rather tough and violating world. Life has become more colourful, textured and meaningful.
So a key cancer benefit – or a possibility, at least – is that cancer is a big jolt to become more human, to live more fully – even if physically constrained like me. In some respects it might be worth looking on cancer as an upgrade – and other terminal, serious and painful ailments too. From a soul viewpoint, at least.
It’s not a matter of primary importance how long we live – dying ‘before one’s time’ isn’t necessarily a failure or a shame. What matters is how we filled the time and space we were given, how we chose to experience the life we had and what contribution we made. In terms of soul evolution, three years with cancer can sometimes be equivalent to fifty years of normality.
But then, you don’t have to contract cancer for that to happen. It’s the way cancer hits you that matters, and what doors it opens – and whether we choose to go through them. This is regardless of how well or badly the cancer goes from a medical viewpoint. It’s the psycho-spiritual impact and the jolt that matters. It induces a cards-on-the-table focus of energy and of will-to-live.
It obliges us to face our shit, stuff, fears, failings and foibles. And regrets. On a deep level, that’s one reason why cancer is increasing in incidence: it’s one way in which the soul of humanity is serving us notice that we need to wake up. Or, at least, wake up more. Or you die. It’s a simple formula. It’s a bit like being in a war or crisis zone – the situation is terrible, but a crazy enspiritedness can take over, making you put your life on the line and getting you through to where you truly need to go.
My cousin Faith calls it a state of super-concentrated uncertainty. Or I’m reminded of the title of Alan Watts’ book of fiftyish years ago, called ‘The Wisdom of Insecurity‘.
Even so, I’m rather relieved to know that I’m cruising along on a cancer plateau and my results are okay. I felt it was so, but the confirmation is much appreciated. After all, it does help to know at least a little about what’s going to happen next. Should I buy a new computer or put some money down for my funeral? Um, I don’t know, but it might be the computer. Sometimes you just have to choose. And that’s what life on Earth is about.
With love, Palden.
[Written using human intelligence. Such as it is.]
PS: my cancer book is progressing, and recently I decided to release it as an audiobook too – better for people with fatigue and chemo-brain. I still haven’t found a really good title for it though. That’s most strange. I guess it’ll come in its own time.
Site: www.palden.co.uk
Blog: https://penwithbeyond.blog
Palestine Audiobook: www.palden.co.uk/audiobook.html
Podcasts: www.palden.co.uk/podcasts.html
Meditations: www.palden.co.uk/meditations.html
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