G’day.
Author: miltonline
Holy Roller Coaster : Day + 46
Greetings. Last Friday I was given 2 units of the red stuff as my Hgb levels had dropped to 8.9. I have felt alot perkier since then, getting on with the good things in life. However, my energy levels seem to fluctuate daily: Friday I walked 6 miles in one go, today I need a motivational speaker to pick something up off the floor. I guess thats the way it will be for a while and I just better roll with it. The cough is generally alot better, I should shake it in a few more days. It’s my birthday on Thursday, I will be 34. I made it. Who would have thought? Okay, I need a nap, so I will leave this as a brief update…
Take Care…milt
Yo wHat’s uP, CaNcEr PosSe? Word uP with all the ilLin’ NEuTz, cHiX & dUdEz!? (Miltcentral.com is now brought to you by MTV-Surfer division)
I’m doing fine apart from a persistent, pesky, IRRITATING cough. Hence this is being written at 2:18am – there are times when it just won’t let me sleep. I shall be in hospital in a few hours for a blood test, so I’ll see what they can do for my cough. I’m not too worried about it as I am generally in a good way. A typical day now involves: 3 hours decent guitar practice, a good hour walk, 2 hours housework (yes, people I’m that kind of guy! NO, not THAT kind of guy!) some admin, some project marking for work, some clothes hunting (what happened to all the decent jeans? Did they get up and walk away when I was in hospital?) some cookin’, playing guitar duets with Bridge (Bach and Jazz stuff), some refreshment in a local teashop, a little reading and some loitering in bookshops. All good life things that living people do. However this is the 3rd night in a row without a good sleep, so am getting a little weary.
But hear me now: I have decided that i am over this cancer crap. (It’s just SO 2004, darling) I’m not scared of it, I feel that I’ve beaten it and I’ve learned all I’ve needed to from it. Frankly, I am bored of it and bored of being a ‘cancer patient’ – and I am indignant about giving it any more of my time. But I am very much still ‘in treatment’ and ‘in danger’ – it’s just I feel like I can take it from here. But this cough is a pain, I’ll be thrilled if I can beat it naturally.
Blood results tomorrow (will I need a transfusion on Friday? Find out here!)
No one messes with me!
Milton AKA Rebel Without Applause
Stuff : Day + 37
Another significant click today. Impossible to explain precisely, but I felt just a little bit of life in me today. Still tired and weak of course and also have picked up some weird cough- but undoubtedly I feel just a little bit better.
Unfortunately I don’t feel well enough to see Bridget’s pupils at Radley College perform a concert. A collection for Anthony Nolan Trust (how kind) will be made at the end of the concert, once a short speech has been given on the importance of the charity. How quickly life can change.
I felt well enough to walk through the park and up the high street amongst the normal people. Naturally part of me couldn’t help wondering:
“Do these people have any idea who walks amongst them-bald head covered, slightly wobbly with far-off gaze? Do they know the ordeals I have endured? The struggles I have seen? The battles for my very life?”
No, they don’t.
In fact using my very keen mind-reading skills I gathered these, the most popular thoughts in the heads of my fellow pedestrians:
– “Other people MUST notice how sexy and indifferent I look in these extortionately-priced designer sunglasses.”
– “Other people MUST notice how sexy and indifferent I look in these reasonably-priced fake designer sunglasses.”
– (Amongst 16-year olds) “I look SO cool in these massively oversized jeans that keep falling down.”
– (Amongst smokers) “Littering laws don’t count if you are cool enough to smoke”
– (Amongst 13-year olds) “This outfit makes me look like i’m twenty-two years old!”
– (Amongst 40-year olds) “This outfit makes me look like i’m twenty-two years old!”
– (Amongst 22-year olds) “I hope its clear how bored, sexy and indifferent I am.”
– (Amongst poor kids) “Wow, with this massive gold chain, I look like I’m rich!”
– (Amongst rich kids) “Wow, with these shitty trainers, shitty jeans and shitty hair, I look like I’m poor!”
– (Amongst parents out with their kids) “Where did my youth go?” (Either meaning)
– (Amongst teenage kids out with their parents) “Sooooo booooriiing”
– (Single men in bookshops attempting to look eligible) – “Must browse contemporary fiction – Must stay away from Science Fiction section”
– (Single women in bookshops attempting to look eligible) – “Must browse contemporary fiction -Must stay away from Self-Help section”
Speaking of bookshops, I went to Waterstone’s today, sat in a leather armchair and happily read HALF of John O’Farrell’s new novel. I would have read it all but was rudely informed by the man trying to stack my chair (with me in it) that the shop was about to close.
So why didn’t I buy it? No I am not a cheapskate- in fact my LFE (Lifetime Frivolous Expenditure) may equate to the value of a subcontinental country or even a broom cupboard in Kensington. The reason I decided to read the book then and there is that WE ALL HAVE TOO MUCH STUFF!!! And we don’t need it. (Also it wasn’t out in paperback yet)
I have a theory why we all have a tendency to hoard and own so much stuff we don’t need ( Yes YOU. Don’t believe me? Men look through your CDs, books and especially DVDs. Women: Count your shoes) No its not the caveman “Hunter/Gatherer” Theory or the fear-of-time-passing-and-inevitable-death “Material Hoarding” Theory.
My theory is that we are all scared of NOTHING. I don’t mean we are fearless. I mean we are scared of the concept of nothingness, the ether, nada. Deep down we KNOW that we are just comprised of atoms, their nuclei so distant from one another that we rival a Cadbury’s Aero chocolate bar in our scarcity. We are mostly absolutely nothing, occupying an infintessimal fraction of space and with a lifespan that is pathetically fleeting relative to any astral body. Just nothing. Our reaction as nothing-averse people is to coat ourselves with as much STUFF as possible, internally screaming ” I exist! I EXIST!!!”
I say: Let’s all just chill and learn to live with Nothingness for a while. In the meantime please ask yourselves this:
“Does the thought that we are just outlined sections of nothing floating in space, bouncing off but never actually touching anything else, terrify you? If it was true that we are just nothing then how would you chose to live your life?”
No differently I hope!
Okay blood test tomorrow, followed by Waterstone’s to finish that book.
Sweet dreams- Milton
Crash Course: Day +34
Okay, I would have updated sooner, but it can mainly be summarized with one repeated letter:
“zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz…”
Any day of modest activity (Hour-long walk, sorting that mountain of letters etc) is followed by a day with 20 hours of sleep (no exagerration) I guess I have been knocked to the ground and this is where I start (FAME!) paying…
Went to Hammersmith Hospital on Monday for a routine blood test and got some pretty encouraging results:
Hgb: 10.6 Platelets: 308 WBC: 5.6 Neuts: 3.8
Which apart from being slightly anaemic, are NORMAL results ie. what YOU might have(unless you happen to be a neutropenic reader) Crazy, huh? Have been imagining a Mid-September return to work. That gives me 4-months clear. So better get back to it:
“zzzzzzzzz…..”
-Miltonius
THE HUMAN RACE
Proud to report that my brother-in-law, Chris Upson (2004 FRA Long-distance Runner of the Year) has returned safely from the Himalayas where he was competing in the gargantuan Everest Lafuma Sky Race. He did fantastically well, finishing every leg of the race in 12th position or higher!(Out of 40 top runners) The final leg Chris finished 7th, beaten only by the 6 sherpas! He is incredible! Many thanks to those who supported him,
GTFOOH* DAY: Day +27
*a true milthead knows what this means
People I am gone, solid gone. 5/5/5 has neatly heralded my discharge from le hospital mes amis. Today’s counts (with yesterday’s in parentheses) read:
WBC: 2.6 (2.1) Neuts: 1.1! (0.8) Platelets 272!(similiar) Hgb 9.7 (9.7)
Although my immunity is compromised, these are reasonably safe levels with which to go home and they are ON THE RISE. Why? Because Alex’s, well, my, bone marrow is working. Put THAT in your pipe and smoke it!
Of course I am still under treatment for leukaemia, have major potential dangers ahead, am yet to receive an ‘all-clear’ biopsy, have a 2-week supply of drugs that would make Hunter S. Thompson blush and have still got a lot of recovering to do BUT this marks something extremely significant for me. (By the way, feel free to break up any of my sentences into GCSE bite-size nuggets.)
Took me, well my mum, all morning to unpack the hospital room. I did leave one thing though and it’s written in big blue letters…hehe.
I’m home, it feels good. The updates will not stop. Back in Monday for blood tests and now that mountain of letters…
Cheerio,
Milt x
The Dry Retcher’s Cut : Day + 25
Hey, hey.
The English Impatient: Day + 23
Okay, I’m back. And when I say I’m back, I mean I’M BACK. Despite encouraging but frustratingly lackadaisical blood counts, persistent nausea and looming claustrophobia, I am starting to feel human again. There is a spark of my old(new?) self in me and I am longing to get out of the ward and into the (bloody) great outdoors again. Bridget came to see me, and brought with her a damn good home-cooked bolognese – the first meal I’ve really enjoyed in my new body. We then snuck out for a mile-and-a-half walk around Wormwood Scrubs, the sun and air was beautiful and I felt the faint but magical glimmer of spring-time in my soul.
Factoid for your digestion: Today I am starting to feel reborn, today also happens to be Greek Easter Sunday and how old am I? 33. Sound familiar? Coincidence?? Er…yes, probably.
Cannot wait to get out of here, I feel like saying “Thanks guys, I can take it from here.” and just getting out of the ward and start building my new life. Alas, my neuts are hanging around 0.5 and there is still an Indiana-Jonesian obstacle course of medical dangers ahead. These are to be negotiated over the next 60 days or so- but I should get out of here in a week or so.
Don’t get me wrong, I’m battered, not out of the proverbial woods, nauseous and fairly weak. However, something in me has switched. There is a clear feeling: Not this time, Dr. Cancer.
This week I have written, in large friendly letters, a two-word slogan on the notice-board in my room. This has acted as an inspiring mantra at this time. You may want to take this sublime messsage with you on your travels. It reads simply:
Days Like These : Day + 21
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.
A Turn Up For the Books : Day + 18
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.
Tube Strike : Day + 17
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
Us + Them : Day + 16
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 Dull Boy? : Day + 15
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
The Big Drip : Day + 14
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…
Milt xx
Many Hippies Return : Day + 13
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!
love, milton
Welcome readers, girls and boys, young and old, near and far, tall and short, thick and thin, fish and chips!
An important day today. The day of my last chemo. (Assuming no relapse) That’s it. One little methotrexate injection and then it’s over. No more fluids pumped into my body that are meticulously designed to kill my blood cells- that is a welcome thought indeed. Of course, I am grateful for the chemo I received as without it, I would be an ex-Milton. But only someone who has been through extensive treatment can fully undestand how horrible chemo can be. ‘Normal’ life seems pretty good at the moment.
I am, of course, still reeling from all the chemotherapy and radiotherapy today. My head is woozy and sometimes it takes me a good half-hour to formulate a thought:
“Me…..change…..channel”
However I am proud to say that in Countdown today, I managed to find a solution in the maths round when neither the contestants nor Carol Vorderman could. Perhaps they should do more morphine on the show. It would at least help deal with Richard Whiteley’s jokes. Apparently my eyebrows and eyelashes are destined to fall out soon, but no evidence of that as yet-will keep you posted. Some good news: It seems that, at long last, the numbness and tingling in my fingers (caused by vincristine) is starting to abate. So my guitar playing may well return intact. Wonderful.
Bridget and her good friend, Sarah visited me today. They were extremely funny and filthy-mouthed. Any americans who think that British girls are in any way prudish or shy haven’t met these two yet.
Spent the evening so exhausted that I couldn’t muster the energy required to turn the TV off. (This is particularly pathetic as I had the remote within reach) So passed the midnight hours watching Late Night Poker and stopping myself from turning over in bed – lest they discover me in the morning, strangulated by 4 plastic tubes with a silly look on my face. Adieu.
Cells, cells, cells : Day + 11
Hi, everyone! Many thanks (again and again) for all your messages of support. Take away the small matter of leukaemia, and what we have here is some strange guy in London lying in bed all day, watching TV, taking hard drugs and being told by people all around the world what an inspiration he is. Nice.
Had a chat with my consultant Dr. Eduardo Olivaria – he really knows his stuff. Apparently, I am doing extremely well – any infection that caused Saturday’s temperature spike seems to have been almost immediately obliterated by the antibiotics. I also have gotten away with much-better-than-expected nausea/discomfort levels. When, I hear the late-night retching contests from the adjacent cells (rooms), I do feel like I’m having an easy ride. Then again, maybe those fun and games are ahead of me in GVHD land.
Eduardo also mentioned the ‘excellent’ sample of stem cells that Alex donated(thanks Alex for looking after yourself so well) Those stem cells should now have made it to my bone marrow. They will continue dividing over the next 10 days until mature blood cells start spilling out of the marrow and into my blood circulatory system. Exciting, amazing stuff.
From then on I will be watched for GVHD (Graft versus Host Disease)- which is basically my new white blood cells attacking my own body. GVHD can be nasty but with it comes the beneficial GVL (Graft versus Leukaemia) GVL offers another line of attack against any leukaemic cell that survived ALL the chemotherapy and ALL the radiotherapy that I have been subjected to. Get dem suckers!
You know what? Maybe this just might work…
And so to bed.
Milt x
Where Do We End? : Day + 10
Greetings and thanks for reading. The big one-zero today. Feeling replenished by yesterday’s 2 units of the red stuff. Had very little sleep last night due to a lot of coughing in the night (leading to medieval-bedlam style mouth froth) and I still have difficulty swallowing. Other than that, no big complaints – things just aren’t so bad.(Perhaps I’d be singing a different tune sans morphine) I’m chilling out, and getting all the food, water, anti-sickness medication and morphine I need, automatically pumped into my body. And look, my hands are free to type this. Okay, I keep falling asleep between every sentence and the late-night snooker is mixing up a strange cocktail of its own, interweaving into morphine-induced reveries (the last of which, by some freudian connection, featuring the Cheeky Girls on an InterCity train and me hovering from cabin to cabin announcing – among gasps of disbelief – my imminent departure from the train.- interpretations on a postcard please) So please understand if this reads a little dreamily.
The doctors are happy with my progress and say that I am in a very good condition for this stage of the treatment. Good-o, have settled in here – and the less impatient I get. so the days are tunbling by a tad bit quicker.
As I sit here typing in the wee hours of the morning, I marvel at the ability of the human body to adapt to such treatment & abuse. The body just wants to live, and happily adopts artificial orifices and probosci to achieve that end. A plastic tubing running from my stomach up my throat and out of my right nostril in order to absorb ‘pre-chewed’ omni-food, now feels perfectly normal. The same may be said of my Hickman line that now feels like part of my body: a 3-pronged, easily-accessile exo-vein ( or exo-artery) with standard connectors. Technology has provided the human body with an evolutionary lineage of its own-transforming us into organic/technological hybrids. Telephones have thrown our voices over thousand of miles, spectacles remedy nature’s imperfect optical system, we steer our cars with as little conscious control as when we walk, good typists think words onto a page, we virtually ‘chat’ to others all over the world and we can replace entire organs – even a complete immunity system. It can be difficult to tell where we end and the technology begins and indeed, where it all may end. (homo sapiens technicus?)
With this rapid expansion of technology comes a great responsibility. Perhaps the most important technological development will be the much-needed Intra-Cerebral-Common-Sense-Filter.
Good night.
Milton
Knowing Our Limits: Day + 9
Hello again. First of all congratulations to all the London Marathon runners and particular thanks to RAM colleagues Kathy Adamson and Lindsay Wood for their great achievement today and for raising a wedge of cash-ola for Macmillan and the Anthony Nolan Trust. Great job, guys. (Note, in a bid for international appeal, my american unisex usage of the word ‘guy’)
Watching the amazing Paula Radcliffe knock off mile after mile I was reminded of am intriguing fact. Apparently not much longer than 50 years go, some members of the medical community were promoting theories of why it was physically impossible for a man to run a mile in less than four minutes. (I am sure that they would go on to attempt to prove that it was equally impossible for a woman to run at all – due to fainting spells, pinafores and general frailty)
Of course ever since Bannister did his stuff in 1954, the 4-minute mile has been repeatedly smashed, so it wasn’t impossible after all. Another angle: In the 70’s when air travel was relatively new, passengers actually used their sick-bags – a lot. In my experience, they are hardly used at all these days. It’s as if we no longer have a conceptual problem with being hurtled between continents at high altitude – and our guts are now cool about it. We humans are very stubborn with our beliefs but when they are blown away, most of us tend to adapt quickly discarding our old paradigms like unwanted Christmas sweaters and doing our best “I knew that” swagger. (Some belief changes that (most of) humanity have rolled with: Atoms, round earth, circulation of the blood, evolution, space travel, general theory of relativity, bone marrow transplants, Arnie in politics…)
So what will be the next preconception to fall? What is the next thing we ‘know’ to be impossible that will be achieved? A computer that exhibits consciousness? Impossible? Only the domain of humans, apes, dolphins, whales and Lassie? A renewable energy source? Intelligence in Space? Intelligence on Earth?
Perhaps. the next discontinuity for our little heads to leap-frog is a link between mental attitude and healing: A scientific explanation of how mental thoughts can encourage heathy cell growth and promote recovery from serious illness.
Nah, that’s impossible…
Bye chap(ette)s!
milt 😉
The Low-down : Day + 9
Morning. Things are fine. A wee bit discombobulated (bamboozled, twirly-headed etc.) by the cornucopia of fluids pouring into my artificial orifices. (Basically yesterday’s menu replacing the platelets and piriton with 2 units of red blood) Swallowing is very painful, but am getting my whole daily allowance of food and fluid through my trusty nose-tube- so I’m not bothered. For some reason I am finding solace today in a book of logic problems. So who’s a nerd now, eh?
Can’t Swallow? Don’t Wallow! : Day + 8
I think I achieved a personal record last night. Simultaneously I received fluids from FOUR pumps (Magnesium solution, Anti-sickness, Morphine and 1000ml of ‘feed’ called Osmolite) At one point, the tube that attaches to my nose-piece became disconnected and I had the unique experience of having pink liquid pumped down my back. Strange but not entirely unpleasant.
Osmolite is pretty clever: Each ml gives one calorie. So last night I had half of my daily quota of calories through my nose. Today, because my swallowing is getting more painful, I will get my full daily allowance (2000 ml=2000 calories) through my nose-tube. So at last we are getting some futurism going on. Okay its not the just-add-water-roast-dinner-in-a-pill scenario, but the idea of being fully nourished without eating still impresses me – so do portable handheld video/audio communication devices (mobile phones) and a hugely vast and reconfigurable interpolated nexus of data flow (The Internet) Now where the hell are my teleporters, weekend trips to the moon and lady-aliens??
Hair Today…
Yesterday, I noticed that I could easily pluck hair from my head and stubble from my chin. So last night, Bridget did the honours and gave me the Crowning Glory (Also known as the Full Kojak, the Cue-Ball, the Potato-With-Glasses, the Chrome-Dome, the Captain Picard, the Milton McNugget, the Golden Baldy, the Talking Melon, the Shining Noggin, the Boiled Egg, the Globe-with-ears, the Easter Treat or the Stubbly Beacon)
I am told that hair takes a long time to return after a BMT, so I am doing my best to list the positives:
1) Save on Shampoo, Conditioner & Gel (We’re in the money..)
2) Shorter showertimes = time to learn a new language, lead double-life as secret agent, longer sleeptime…
3) Adventurous (and non-pretentious twat-ty) use of hats
4) Telling door to door salesmen I only have 2 weeks and admiring the clouds of dust they leave behind them. (Doesn’t work on Jehovah Witnesses- they tend to linger for the 2 weeks, reading the WatchTower, eating all the chocolate biscuits and pretending not to believe in dinosaurs)
5) No Bad-Hair days. Then again no Good-Hair days, just No-Hair days.
6) No risk of Nits, Head-Lice or the Lesser-Known-Colombian-Hair-Lizards
7) A Reflective Surface is useful when Lost At Sea
WE INTERRUPT THIS RIDICULOUS SOLILOQUY TO BRING YOU THIS LATEST REPORT…
Saturday Night Fever
After spending yesterday hanging around the 37’s degrees centigrade area (98.6-100.4 degrees fahrenheit), today I busted the 38 degree threshold with a temperature of 38.5 (101.3 degrees fahrenheit.) This is due to an INFECTION and means being blasted with antibiotics for ONE WEEK and (maybe) feeling lousy for a while. I say PUMP UP THE MORPHINE.
So get out your wide-collar white-suits, your sequine dresses and your platform SOULS….coz we are partying tonight!
In that spirit I give you my ammended lyrics to the BeeGees’ classic ‘Stayin’ Alive’
Well, you can tell by the way that I can’t talk,
I’m a chemo-man, I can hardly walk.
Needles and pills and morphine sweet,
Bloat so much, can’t see my feet.
And now it’s alright, I’m okay.
Please don’t look the other way.
We can try to understand,
Why cancer gets a healthy man.
Whether I’m a baldy or whether I’m all fried,
I’m stayin’ alive, stayin’ alive.
Everybody’s jabbin’ me and the drugs grabbin’ me,
I’m stayin’ alive, stayin’ alive.
Ah, ha, ha, ha,
Stayin’ Ali-i-i-i-i-i-i-i-ve!
An infection at this stage is very common, hopefully we caught it early and it won’t cause too many problems. What is certain is that I’ll be monitored constantly from now on and be very much ‘hooked up’. Here’s today’s menu (inhale and say in one breath)
20-hour anti-sickness drugs, 20-hour liquid morphine, 3 x 10-minute antibiotic syringes, 1-hour antibiotic drip, 20-hour Osmolite ‘feed’, 6-hour hydration drip. 3-hour immuno-suppresant, 10-minute methotrexate chemo injection, 2-hour saline drip, 2 blood-tests, 1 Chest X-Ray, 10 ‘obs’ (blood pressure, pulse, oxygen saturation and temperature readings), 1-hour magnesium drip, 5-minute piriton injection, 1-hour platelet transfusion, 12 antibiotic/antifungal tablets, 6 antibiotic mouthwashes and 2 soluble paracetamol.
So do you think I’m still okay to operate heavy machinery?
Later peeps – milt
I don’t really like TV at all. Apart from the odd amazing documentary, Derren Brown show or movie, I usually find it rather depressing, trashy, celebrity-worshipping and painfully unevolved. However, I don’t mean to sound like an arse and I do appreciate the ‘comfort quality’ of TV and its amazing time-killing powers when one hasn’t got the mental or physical strength to get through the day in a more creative and constructive way. In this spirit, I present The Ultimate Consumer Guide to Crap (British) TV or How to Numb Your Brain and Kill the Day when you are in Isolation, on Continual Drips, Can’t Speak and Want To Get ONE DAY Closer To Engraftment.
Time | Channel | Program | Survival Tips |
7:30 | Channel 4 | Friends | Pretend you’ve never seen that episode |
8:00 | ITV1 | GMTV | Hard drugs |
8:55 | Channel 4 | Will & Grace | Think how recently homosexuality was taboo on TV. Still basically “oo-er missus” humour |
9:25 | Channel 4 | Nikki | Imagine how on earth a WHOLE TEAM of writers managed this. Or… |
9:25 | Five | The Wright Stuff | Marvel how people will ring in with absolutely nothing to say. Be grateful that we live in a country where things are up for discussion |
10:00 | Five | House Doctor | Promise yourself that your house will be beautiful (again) |
10:30 | Five | Trisha | You are on your own here. Absolutely vile. |
11:00 | BBC1 | Weighing In | A kids “fat camp”. Hope you get weepy. |
11:45 | BBC1 | Mind Your Own Business | Marvel at the power of presentation on our spending instinct. |
12:15 | BBC1 | Bargain Hunt | The lowest prize-giving show ever! Think of more crap puns for the items. |
1:00 | BBC1 | BBC News | Remember that unreported good things are also happening every day |
2:00 | Five | Day-time old movie | See how films can actually be made without 20 minutes of car-chase and explosion at the end e.g. a script. Or.. |
2:35 | BBC1 | Murder She Wrote | Marvel at the leniancy of the police in letting a writer investigate a case AND how the harrassed culprit folds and sings like a canary in the final confrontation. |
3:15 | Channel 4 | Countdown | Play the game. Count very slowly to 10 when Richard Whitely uses a weak pun. Live in eternal hope that a REALLY rude word crops up. |
3:30 | BBC 2 | Flog It! | See Bargain Hunt. |
4:00 | Channel 4 | Room for Improvement | See House Doctor |
4:30 | BBC 2 | Ready, Steady, Cook | Vow that you will learn to cook, watch how closely Ainsley hugs from behind |
5:00 | BBC1 | The Really Wild Show | Awww, tiger cubs. |
5:30 | Five | Five News | See 1pm |
6:00 | Channel 4 | Simpsons | Enjoy. |
6:30 | BBC2 | Ask the Family | Nice functional families |
7:00 and on | Any | Any | Freestyle it. Remember it is possible to watch several programs at once |
The Ultimate Consumer : Day + 6
I am extremely well-connected these days; meaning that all my artificial inlets and outlets are seeing some use. Here’s a list of the day’s comings and goings.
Out: 3 vials of blood for testing.
In: antibiotics, antifungal and paracetomal tablets.
50mg syringe of the immuno-suppresant Cyclosporin. (3hrs)
Pre-platelet dose of Piriton to prevent allergic reastion. (1 min)
One unit of platelets. Thanks stranger! (<1hr)
One dose of Buscopaine for stomach cramps (1min)
500ml (=500 calories) of feed through my nose (10 hrs)
50mg syringe of Cyclizine (anti-sickness) (12hrs) and…
50mg syringe of Morphine (22hrs) which brings us to…
The God of Dreams
Morpheus is the ancient greek god of dreams (Kids, this was some time before the Matrix) I am now embraced in is loving arms – albeit a very slow dose. The effects are subtle but noticable. I have a general feeling of well-being and am feeling far more comfortable (less headaches, cramps and general discomfort.) It is, however, not a strong enough dose to relieve my swallowing pain- I am using anaesthetic mouthwashes for that and it helps a little. Since November, I have grown accustomed to a general crappy state; it is therefore a wonderful respite and makes me feel excited about feeling good (naturally) in the future. In the meantime, if you need to reach me, I will be floating in a viscous time-distorted nexus of multi-dimensional (sur)reality…
Cheerio, milt
Ouch : Day + 5
Okay, now I know what all the fuss is about. In the middle of the night, my mouth just deteriorated rapidly. Very sore to swallow and a continual pain. It looks like most of skin in my mouth has been removed due to the effects of the conditioning chemotherapy, radiotherapy and the methotrexate injections. This condition will worsen until my new stem cells have engrafted. This usually happens around Day + 21. So this will get worse (or get no better) for a couple of weeks- during which time all my hair will fall out and my blood counts will bottom out. So an important job at the moment is PAIN MANAGEMENT, FEEDING and BLOOD TRANSFUSIONS.
Pain Management: At the moment I have Paracetomol, a couple of pain-killing mouthwashes (Difflam & Lignocaine) and Dimorphine, which I will probably start tomorrow.
Feeding: I will probably start using the nose tube very soon as it is getting increasingly difficult to swallow. It will probably be liquid, as the only food that could make it through are individual strands of spaghetti.
Blood Transfusions: Once my platelets drop below 10, I will get transfusions. The Haemoglobin level will probably drop later and I will get red blood cell transfusions to tide me over until I start producing my own. Did I mention how important donating blood is? 😉
Am still in good spirits and coping fine. However these are quite challenging times and I am just focusing on knocking off each day at a time and patiently inching towards the magic day when things start to turn around. I refuse to be depressed or sorry for myself; I am too grateful to have made it to remission and to have matched my sister for any of that.
Tomorrow, my good friend and fellow patient Tim Stollery is having an operation to cut out any remaining cancer. Please visit his site for updates and sign his guestbook.
Okay peeps, thanks so much for your messages and to my brother-in-law Martin May for ‘presenting’ me at his school’s assembly. Hence the plethora of messages from Welsh schoolkids!
Have a good one! Milt