Sometimes a comment spontaneously written in an online discussion can say it in ways it’s difficult to think up most of the time, and this morning I had one of those. I was commenting on a FB post by a fellow Myeloma patient who had just had shocking diagnosis news, and she was reeling from it – her fears were overwhelming her. So I wrote this to her, and it sums up a lot for me, as a cancer patient. Might be useful to a few of you….
You will pass away when your heart and soul feel the need to give up, or when your angels decide to take you out, or when it’s time and it is good and okay. You’ll have your own way of seeing and defining this.
But this kind of idea brings more control back to you, and it places an emphasis on keeping your heart and spirits up, as a primary focus. In this sense there is a perverse gift in cancer: it prompts us to monitor, be aware of and look after ourselves like never before, and to look at some of the more fundamental life questions that previously we avoided. It’s even arguable that some of those avoidances can be seen as a psycho-spiritual cause of cancer.
Without cancer we are nevertheless prompted by life to learn and grow, but with it the stakes and the issues are amplified. One of the big lessons that has come to me since diagnosis has been this: if it lifts me up, I need to do it, and if it weighs me down, I need either not to do it or I need to reassess. Psychological de-burdening.
Amongst other things it is an opportunity to redesign our lives to make them work better, for us and those around us, prompted by the tightened parameters, disabilities, fears and challenges myeloma brings.
Sometimes, early at dawn when it’s too dark to photograph it like the other birds shown here, a little wren flits to my window. It surveys the scene, sees a few crumbs on the breadboard, flutters down, feeds and looks around, then flutters back up and out. What a gift. It doesn’t know that it has become a healer of the highest order – or that news of this would stretch across the world. So wren and I are doing a good business in crumbs – and this morning, guess what, it had crumbs from the last of Lynne’s Christmas Cake! Bonus.
Slightly soppy Jupiter in Pisces that I am, I’ve been leaking tears recently, and it’s fascinating to discover what it’s all about. Several things seem to connect up to get it going – some are very positive, such as the little wren. One is about me, one is about people I know and have a connection with, and one is about the wider world.
I’m starting chemo on Monday 1st February and this will last 5-6 months, probably followed by a few months of fatigue and other side-effects. If I don’t do chemo, then the blood cancer I have will gradually hollow out my bones, I will get more collapses of vertebrae in my back and bones going brittle, I’ll become seriously disabled and eventually I’ll die, quicker than otherwise. I don’t have great expectations, but the chemo might give me a few more years with which to complete things, inshallah.
To holistic crusaders who think there’s a better path to follow: I’m on the same side as you, and if something had come up that was sufficiently convincing, based on real experience with my particular cancer and who and where I am, and if there had been a sufficient support system that I could afford, I would have done it. So thanks, and I know you mean well, and I have chosen this path, and here we go…
But it scares the hell out of me too. Mercifully, I’m not unused to that: before working in conflict zones or entering risky situations I’d grind through my stuff in the days and weeks preceding, though increasingly I found that, on the day, I was fine, balanced and fully present. It worked, mostly, in those things I could affect. In those things I could not affect, which are many in chaotic situations, I just had to take my chances. And here I still am.
So at times I’ve been feeling vulnerable and shaky, digging around in my fears. One big thing to overcome is lingering resentments over the way things have been in my life, that have not changed for the better, despite all that I and so many others have done over the years. This is coming up now with the doctors I’m working with. As a longterm vegetarian, meditator and consciousness-explorer, also very underweight, I believe I should be dosed with medications about 30% below the norm. In the last few days I haven’t taken a single pill or shot of chemo yet, yet my body and psyche are already going there, as if autonomically inducing it. My medical results have been pretty good: last year my chemo treatment, standardly eight cycles, was cut to six, then five. These results the medical profession just calls ‘good luck’. In this they are incorrect. I’m lucky, yes, but these outcomes arise from choices I have made and positive inputs that are way outside their zone.
Back to the fear. It is activating pain from the past, about being, or feeling, misunderstood and treated inappropriately, being judged and penalised for being who I am – and I’ve had a good load of that! But it’s still going on now to some extent, and I’m unhappy about that. On the other side, I do trust my doctors, and while they do want the best for me and to get things right, they can also make my life more difficult than it needs to be. Owing to institutionalised taboos against alternatives in medicine, and because doctors lack experience of holistic solutions and odd people like me, they don’t take seriously those things that are serious for me – particularly concerning pharmacological side-effects.
To be honest, this is also the case with some holistic practitioners too, who might be qualified, and who might think they know, and they mean well, but some of them also try teaching their grandmother to suck eggs, or they err a little too far on ideology, or they lack specific experience, incorrectly applying knowledge about tumorous cancers to my much rarer leukaemia-like blood cancer. With a rare disease and an unusual person, this can be problematic, being misjudged from both directions! Though I don’t want to seem entirely critical either, since doctors and healers are genuinely helping me too. However I am yet to find someone who is competent, experienced and unbiased in complementary and conventional medical fields together – integrated medicine.
One other thing I’ve had anticipation about is the task of training friends and people how to behave with me, as a cancer patient. Most people don’t know how, so they leave me alone, and this isn’t a solution – especially with people I’d like to see. Others get awkward, or try too much to help, or they’re so sorry or anxious for me – and I just need people to slow down, make us both a cup of tea, be a friend and act naturally!
Here’s a tip for dealing with someone with brain-fog: instead of asking me what I want, tell me what you’re proposing and let me say yes or no. Or just do it anyway – keep it simple. This gets around chemo-brain and the frontal-lobe issues it brings – making decisions, finding words, remembering details and following long explanations.
Here’s another one: please don’t ask me ‘How are you?’! I am asked this multiple times per day, and you’re requiring me to do a systems check and report this to you verbally and then to deal with your responses and concerns – and, believe me, it’s tiring and repetitive. I write these blogs to report what’s happening. If we do meet or talk, please just treat me like a ninetysomething, have a good conversation or communion with me and you’ll then find out how I am. My state can change on an hourly basis anyway.
Anyway, I was feeling vulnerable over all sorts of things. It’s good to bring it up, stir it round and get some of it out of the way – because many of the experiences we have in life are there to teach us. If we learn quickly and willingly, on or ahead of time, we unmanifest certain kinds of difficult learning experiences. Or they become testing experiences instead, where the Universe checks whether you really mean it, emotionally and in your cells and bones. Again, progress in tests depends on our capacity and willingness to go make something good out of a bad situation – and working through fear, guilt and shame in advance really helps us deal with such situations when we’re actually in them. And what we fear and what actually happens are two very different things.
So I am working on welcoming and befriending the process I’m about to go through and doing the best I can with it, on all levels of my being. Really, it’s the only option.
I get emotional over other people too. There’s a woman I know in Ghana whose child died on Friday night – Kwame was perhaps three or four years old and he died of pneumonia. I paid for some medicines but it was too little, too late. God bless Kwame, little soul – he had only a short life. His mum doesn’t even have enough money to bury him, so she’s stuck and rather overwrought. This is the case for many people in countries where health and social support systems are weak, or where paying for healthcare makes the difference between life and death. I cried not so much for Kwame, who returns to his Maker, but for his mother Grace, and for people like her (Lynne is one), who are left with a gap and a shadow of loss or regret when such things happen.
Then I get emotional about the overall world situation. Problem is, I’ve been dedicated to world transformation for fifty years and the new age hasn’t started. I could perhaps have done more, though I’ve done my best, but I’m now deeply sad for the world. The price it has paid for not getting the message fifty years ago is enormous – and there’s more to go. If necessary change leading toward ecological rebalancing, social and economic justice, peace and appropriate development had started back then, the situation we face today would be very different.
I’m a philosophical guy with a longterm sense of history, and I deeply believe things will work out better than many people fear – eventually. But I feel such grief over the way things have gone, and the pain and damage involved. Yes, there have been advances, but the fundamentals have not yet been addressed. This grief is what Germans call *weltschmerz* – the pain of the world. In my meditations I work to reduce the heat and increase the light in world situations and I’m very much a believer in the maxim ‘Don’t complain about the darkness – light a candle’.
When I go to my Maker, then to see things from that perspective, I have a feeling this innerwork, of all the things I’ve done, might be what I’m most satisfied with – even though, here on Earth, it is difficult to see what benefit it has brought, and even though, especially in the now-defunct Hundredth Monkey Project and Flying Squad, we did have definite instances where miracles happened.
Sometimes my tears come up from nowhere. I think of someone, or I hear something on the radio and, whatever I’m doing, I start wobbling, so I stop and give space to that precious and revelatory emotion that’s surfacing. Personally, this is important: I learned to cry only when I was about 30 – and it was an enormous loss that did it. Back then, it wasn’t just my own self-pity, but I felt so much regret for the others who also had lost in that situation. It cracked me up and cracked me open, affecting them a lot too. This experience was important for me as an Aspie: it taught me to look people in the eyes. Aspies are often regarded as feelingless and emotionally neutral, but actually we’re flooded with feeling, often confused where to put it and how to deal with it – so we go blank and get short-circuited.
This loss set me on a path of commitment to pursuing my purpose. It’s the case for many altruists and server-souls: intense pain and dilemma can unleash one’s superpowers, if one so chooses. One supporter of Alexei Navalny in Russia recently said, when asked why she was risking so much by demonstrating in the streets, “I could not bear the thought of not being there” – and this is what changes history. There comes a point where you lose your fear – or, at least, a crucial chunk of it.
Fear is natural. In the animal part of ourselves it warns us of danger, alerting us. But the deadening, sleep-inducing, inculcated and inherited fear we all have challenges us to use it to move forward, to do what we fear, to do it anyway. Though intelligently.
So I start on Monday, getting shot up with Dara, Velcade and Dex, and a load of other stuff to compensate. It involves three visits to Treliske hospital and multiple home visits from a nurse. I reduce my holistic treatments during this period, to minimise complication and avoid conflicts between holistics and pharma. Certain things, like CBD, Vit C, colloidal silver, basic nutrients and other things, I continue because they help the process (Lynne’s flapjacks too). There are other helpers, including an eLybra machine (radionics-like) and homoeopathy. There’s a mighty inner influence from Upstairs, from healers, meditators and well-wishers round the world, from Lynne and close-by supporters, from my adopted homeland of West Penwith and the landscape of the farm where I live. And my tears are part of my arsenal as a warrior-soul. And, fuckit, the past is past and this is today, the next stage on the path. All is forgiven that I’ve uncovered so far, and I’ll try to deal with the rest when I get to it.
I hope to report the whole process, as and when I can. If possible to the end. This said, I must be self-focused in the next few months, and I won’t be very interested in or respond to many people’s questions, concerns, worries and neuroses. Or endless Youtube videos. But personal, briefly-put, interesting thoughts are welcome – I’ll probably see it but you might or might not get a reply. My day will gradually go down to about six hours, probably.
I’ve said this before and it’s worth repeating…
Everything is okay in the end. If it’s not okay, it’s not the end.
This is one of those that’s worth writing on your toilet wall for further contemplation.
Now for the next bit.
Love, and thanks for being alive,
The pics are of birds who have visited my home in earlier years – including one wren who seemed to like hanging by a Tibetan thangka on my wall.