Apologies for the hiatus and many thanks for the many messages of support during this tough time – your kind concern for my well-being is much appreciated. Cheers.
Good news first: I am definitely at the engraftment phase and my counts are slowly and steadily rising (WBC 1.3 Neuts 0.5 Hgb 10.0 Platelets 126)-belated kudos to Sandra. So this is it, Alex’s cells found their way to my bone marrow and are definitely multiplying. It’s incredible. However: the less-than-good-news, my current physical state is subduing most feelings of relief or elation. I really appreciate the good news, but I am so done in by months of treatment that I can hardly function for exhaustion and deflation. Symptoms? Nausea (I can even retch by thinking about a smell), weight loss, exhaustion, insomnia, muscle deterioration, diarrhoea, listlessness(not making any lists-apart from this one), headaches, sneezing, general weakness, nightmares (even the classic ‘Exam Anxiety’ one- you know when suddenly you remember that you have an exam in an hour that needed 2 years of study but you can’t even remember the topic) and everything smelling and tasting bad. Oh well, looking forward to when I can report improved symptoms.
Anyway the docs all say how very well I have done and have ‘sailed through’ the treatment (If that’s the case, Heaven forbid a lesser (dinghy or canoe) course through) So grateful for that as I guess they’ve seen it all. Laying low and trying to tick off the days with as little discomfort as possible- I should be home soon. I can’t believe I can now say those words.
Onward. – Milton.
OK, no over-reacting please: It looks like my counts have been rising for the past couple of days. This may well be due to Alex’s cells having engrafted and doing their thing. So we will be tracking that progress and any signs of GVHD closely from now on.
So how do I feel? Answer: Utterly, utterly exhausted – Sick & tired of being sick & tired and in need of a REAL holiday- one that doesn’t involve being poisoned,being unable to move without trundling around a huge beeping monster, relying on other peoples’ generosity for my blood, being isolated in a small room for weeks on end and all with a sustained background of general nausea and discomfort. No, I didn’t see that one on the Holiday programme.
So Milt’s ideal holiday right now? Fairly predictable. Somewhere caribbean: Blue skies, fine sand, clear waters, fresh air, learning how to surf with dolphins offering congratulations and guidance, playing guitar with a great band for appreciative people under inconceivably star-speckled night skies, lucid dreaming in a luxurious beach cabin, freshly-squeezed superjuices, delicious, satisfying healthy food, growing stronger and healhier every day, no time, no pressure, just a sense of healthy, calm relaxation in an egoless, undemanding, uncompetitive, timeless summer of pure peace.
Okay back to my build-up instant soup, anti-sickness drugs and (reduced) morphine infusion. Sweet dreams, milton.
Yo! (And there ends my bid for the ‘yoof’ market) Today, my nose-tube malfunctioned again. But this time no amount of manipulation, coaxing, pressure from a syringe or last-resort-Coca-Cola-flushing managed to shift the blockage. So I pulled the tube out – far easier than insertion I can tell you. So in order to avoid the ‘nasal-grastic tube insertion blues’, I decided to switch from cyborg to human eating. My swallowing is a lot less painful so this is now an option.
I’ve been so thrown around by chemicals that I have very little appetite. Those of you who have been through cancer treatment may relate to me here: I can be put off food very easily (the odd texture, a chemo flashback and worst of all, the dreaded hospital kitchen smell) So to have had some relief from forcing myself to eat, thinking about food and having to balance nausea and hunger, was very welcome indeed.
The sooner I move to a fully automated human being with all natural functions taken care of the better. Then I could spend my time doing the things that make a real difference to me. Like sleeping all day.
Good night! Milt
Hell-oooo. How are yoooooou? Yes, I am still on the morphine. Some bad headaches today, apparently a side-effect of the morphine itself. Ah, so it wasn’t the cure-all wonder-drug I was promised. I’ve been quite subdued today, leading my nurse to ask as tactfully as possible if I wanted talk to the support nurse about anything. “GET THE HELL AWAYYY FROM MEEEEE!!!” I screamed at her, gobbing freely and waving my arms around like a windmill. No, I didn’t. I said that I was fine, because I am, just a little quiet, that’s all.
I have spent recent days watching a fair bit of sport on TV. This is very unlike me as I have always felt uncomfortable ‘supporting’ a team. There is something about the irrational association and support of some sports team or other that just doesn’t sit well with me. Perhaps I see a hypocritical/illogical element that prevents me from just joining in. For example, the other week the fans of Inter Milan attempted to ignite (literally) the goalkeeper of AC Milan over what they saw as an unfair referee decision. If Italy were to play say England, the fans may just as easily group together and want to make a barbecue with the english goalkeeper. Or if Team Europe were to play Team USA then, you guessed it, it would be Brad Striker (A guess) that would get the Fajita treatment. Its this infinitely movable ‘Us & Them’ mentality that gives me the creeps and to which I don’t fully relate. But I don’t mean to be a killjoy: I have enjoyed many sporting moments and I appreciate that sport provides an arena in which we reach and expand our limits.
I also feel that sport provides people with a much-desired need to judge, rank and apply values. In life, it is difficult to rate success: We put forward money and status as the currency of success but the millionaire rock-star may be utterly depressed, a pauper may feel she has enough to be happy. Sport provides a welcome microcosm where success is clear. You win. You lose. And people love it. There is an insatiable desire to build an arena where there is one undisputed winner. This provides a structure where success is simple, uncomplicated, ecstatic. We won! I have no problem with this, but the spilling over of competitive values into ‘real life’ is a shame. Top Ten music, anxiety over status, the worship of money, self-hatred are all unwanted by-products. Real life ain’t that simple and true success is an internal journey fundamentally different between people and with no common value system.
I long for a world where people will see this and destructive competitive ‘Us & Them’ values hold no power over us.
And I would be the best at it.
Just kidding! Milt x
A Happy Weekend to all! I always regret not being at the committee meeting when it was decided that we work for 5 days and only rest for 2. I mean what group of people sit around a table and come up with that sort of work/rest ratio? Did they just hate themselves? I would have brought to the table a more feline work 2 rest 5 scenario – and probably settled with a 3/4. Yes, I know it has something to do with the creation of the universe but you would think that workers’ rights would have moved on a bit since the dawn of history. Its one of those tacet consensus things – if the whole world point blank refused to work more than 3 days a week and spent the extra time meditating, in the garden, hill-walking, doing yoga, making music, cooking, playing with the cat and/or staring at the sea – then the world would be better. But oh no, someone would be bound to get ahead and start abusing the system for financial gain and we’d be back to stressful-square-one again. I wish I was a cat.
I am feeling pretty slow today. I have cut my morphine dosage by 20%, as my pains are improving somewhat, and I would like to soften the transition back to a drug-free existence. So in general, I am sleepy, groggy, headachy and probably not much fun to be with. My concentration and memory are fairly disabled- so I have lost the energy for any involved reading and even movies are too drawn out (“Who’s that guy again?” – “I thought she was dead!” – “This car chase has been going on for ages” are typical comments) So this is probably why I have gravitated towards logic puzzles- which only require momentary bursts of deductive power and no medium or long-term memory. It also means that you can pass out in the middle of them and upon revival, continue as if nothing has happened. A movie cannot usually support any losses in consciousness as it leads to such startling plot rewrites as to warrant complete bafflement.
So happy to just tick off the days now, happy to be quiet, happy to be a little dull and happy to be alive. Milt
A good day to all you readers out there! It’s a wonderful thought that such a variety of people from all over the world are taking an interest in my morphine-induced ramblings of late. I will wrestle my wandering brain into submission and squeeze out some sense or other. Whoever you are, wherever you live, whether you have had cancer or not, I hope you find some value in these musings and I wish you a wonderful day.
Today is the 2-week anniversary of the bone marrow transplant and those new stem cells are taking position and readying their exponential-growth trick for eventual population of Mr. Milt. In the meantime, I am the Incredible Stasis Man – just hanging in there with no immunity and relying on 23 hours of multiple-infusions every day for survival. I get one hour of ‘detachment’ every day to shower and stretch. Continual attachment to drips eventually induces PDS (Phantom Drip System) This is the illogical feeling of paralysis that occurs when you are, at long last, disconnected from all the machines and find that your body hasn’t fully accepted its new freedom. So you lie there completely still, staring blankly at the ceiling with legs that stubbornly refuse any requests for movement. I find that the quickest way to 2 PDS is by several magician-style arm waves around the whole body until I can fully believe, that, yes, I am free. I AM FREE! Of course, PDS is caused by the continual fear of forgetting that you are attached and taking a nonchalant stroll. I have performed this inadvisable trick a number of times. It goes something like this: Inexplicably forgetting where the hell you are, start heading away from the bed and machine at speed, having that momentary stupid look of confusion on face as the tube(s) become(s) taut, getting sprung back into bed as your vein (or nose) puts up a forceful protest amid screams of warning and terror from all those present. Oops.
Today is also the 5-month anniversary of my diagnosis. 5 months since my life took an unprecedented twist into the multi-coloured world of chemotherapy, major discomfort, international notoriety and very long words. 5 months is a long time to spend in hospital undergoing intensive treatment, but it is a relatively short period to fit in this amazing emotional and spiritual journey. In the desirable scenario that all goes as well as possible, I will be on the road to recovery 6 months from diagnosis and restored to good-ish health within a year. Which is a short piece of life to exchange for a life-changing experience.
Still no engraftment today. That’s okay, despite some headaches and general discomfort, I am happy enough in my little room, doing my nerdy logic puzzles, hooked up to my life-saving chemicals, watching some crappy TV and writing this diary. I certainly have got the hand of living with cancer. I guess my next big challenge will be learning how to live without cancer again.
And so until tomorrow, people, take care of your good selves…
Good morning people of the world! I trust you all slept well (Not together, of course) Let me start by wishing Bridget a very happy birthday. Unfortunately, she is working in Oxford (Radley College) so I am unable to lavish her with gifts and attention today – that will have to wait until I am feeling stronger.
I am feeling UTTERLY exhausted today, probably caused by a combination of yesterday’s methotrexate, morphine, lack of sleep and months of physical abuse. I also have a bit of a temperature today. I feel like I’m floating in a mercury-and-treakle world in very slow-motion. My mouth is a shredded today, but the morphine is masking most of the pain. I can’t imagine getting through this without morphine and I am NOT looking forward to its withdrawal. Thus:
You are my morphine, my only morphine.
You make me happy, when skies are grey.
You’ll never know, dear,
How much I’ll miss you,
Please don’t take my morphine away.
I’m gonna just keep on keeping on and do my best to avoid the major pifalls at this stage- in the meantime, people, make the most of your good health and take just a moment to really appreciate your lives today. I will bid you a farewell before I pass out!