Category: Health & Training

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…

Milt xx

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.

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

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

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?

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 😉

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

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

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

Please check out the pictures page! An inspired design by the excellent Ken Clark.

Today’s happenings:

• Bridget is having a well-deserved break in the Lake District with her dad.
• ‘SuperTrace’ of Houston, Texas is having a double masechtomy today. We wish her a safe op and speedy recovery.
• Bridget’s brother Chris Upson is now in Nepal acclimatizing and readying for his extraordinary challenge.
• Kathy Adamson a colleague at RAM is running the London Marathon for Macmillan Cancer Research. Please support her!

My mouth is continuing its impressive deterioration and I have started to be offered painkillers, which I may well accept soon. Today I will start on the huge task of catching up with messages. That will keep me busy, and prevent me from my favourite pastime: Pulling the emergency cord and lying on the floor frothing toothpaste out of my mouth.

Later! Milton

Guess what? I had my NG inserted today. Another experience I don’t plan to repeat every evening. 2 feet of tubing was threaded through my nostril down my throat and into my stomach. My eyes were streaming helplessly, and my mother was crying her eyes out for another reason. I can feel the tube in my throat. (I was then X-rayed to check the tube was in the right position and not sticking out of my arse or anything) This is certainly going to take some getting used to. It feels so wrong and I look like a cheap extra on an episode of Star Trek.

My body continues its breakdown. Remember when I was zapped? Well all those cells are now dying off. In the meantime, Alex’s stem cells are sloooowly finding their way to my bone marrow in order to perform the amazing job of rebu

ilding my immunity. At this point I will have a whole new set of challenges to deal with. But a change is as good as a rest, as someone maybe used to say.

Onward!

Hello chaps, chapettes, dogs and cats! Thanks for the kind messages re the new vids, Bridget and I loved making them.

What to report? Well as I outlined earlier, the next 2-3 weeks will bring about a breakdown in the lining of the mouth and the gut (mucositis). This is caused by the cumulative effect of the chemotherapy and radiotherapy and also by some methotrexate injections (on days +2, +4, +8 and +12) This will make my mouth so painful and sore as to prevent normal eating and swallowing. Therefore, insertion of an NG tube (Nasal-gastric tube) is scheduled. This is tube that goes in one nostril, down my throat and into my stomach. This will allow feeding during those days when I can’t swallow normally. I have various levels of painkillers on hand to deal with the pain in my mouth, the strongest being Dimorphone (Heroin). Apparently one of the doctors knows a guy in King’s Cross who can sort me out.

Spent most of the day watching TV. Although it’s good for me to ‘switch off’ occasionally, TV can be quite culturally draining so its the TV that’s gonna be switched off more often now.

So we are patiently awaiting regraftment, in my protocol this usually happens around Day +21. In the meantime, my blood cells are dying, my mouth and gut are breaking down and I am getting weaker by the day. Still, it beats teaching.

People, your messages are amazing! Again, thank you so much.

Felt pretty good today, I guess the Radiotherapy is still to fully kick in. However I am neutropenic (0.5 neutrophil level) and so my room has the charming ISOLATION sign outside. They might as well mark it with a red cross and be done with it!

Spent most of the day with Bridget who skillfully edited FOUR new videos for the site, including the BMT itself. We felt that these just couldn’t wait. Why not check them out after reading this?

Alex left the hospital today with some iron tablets and a sore arse. Remember people from ‘The Odds’ video that we had just a 25% chance that we matched? I will never forget to be grateful for that.

I wish you all the best, people. Have yourselves a wonderful weekend. Now, here is my sister’s account of yesterday’s events. Tally-ho from me. Milt xxx

I’m back home from hospital and wanted to say a few words about the experience of donating bone marrow to Milton.

So here it is, the day that took the most intense months of my life to reach. Alex stayed overnight at Hammersmith Hospital, and we got to see her go down to the “theatre” (Its in her blood, darling). Bridget managed to get some excellent footage of Alex “going under” (video, for your viewing pleasure to follow) The procedure started at about 10am and took about an hour. The doctors successfully removed over 1 litre of bone marrow. Incredible.

In the meantime, I received my daily Cyclosporin. This is an immuno-suppressant. The idea is that it will prevent my immunity from attacking my sister’s stem cells which would prevent succesful engraftment. I also was given Piratin and Hydrocortizone to help prevent a major reaction to the transplant.

At about 11.30am the bone marrow arrived, a big bag of darker-than-normal blood. We watched awestruck as it was hooked up and dripped into me via my trusty Hickman line. 6-and-a-half hours later, under frequent monitoring, the bone marrow had been fully transplanted. I only experienced a very slight rise in temperature and moderate drowziness.

Alex’s bone marrow is now inside me.

Alex’s Recovery

Alex is recovering very well and seems to have regained much of her colour. She will be sore in her “lower back” and a little anaemic for a couple of weeks. Needless to say, I am inexpressibly grateful to Alex for giving me the gift of another chance of life.

The Road Ahead

Unfortunately, this doesn’t work like a movie when the sweaty doctor pulls his mask down to tell the anxious family “We saved him!” Not at all. This is just the beginning of my (possible) cure. There are basically 2 phases to my recovery:

The next 3 weeks: It will take Alex’s stem cells until approximately Day 21 to find their way to my bone marrow and start building up a new immunity system. Do you realize I’ll actually change to my sister’s blood type? (From O-Positive to O-Negative)

During this period, my current immunity system will be killed. (The reason is twofold: To make an attack on remaining leukaemic cells and to clear the way for my new immunity system) This is already happening due to the last round of chemotherapy and particular those mother radiotherapy sessions. So I will experience a breakdown in my blood system: I will become anaemic, lower my clotting ability and become open to infection (neutropenic). This openness to infection(neutropenia) is the major danger during this period and will be tackled with extreme hygiene, choice of diet and prolific use of antibiotics. I will also receive transfusions of red blood cells and platelets as necessary to deal with the anaemia and clotting issues respectively.

Another major issue during this period is the fact that the chemo and radiotherapy attacks the fast-growing cells in my body. This causes a painful condition called mucositis where the lining of the mouth and gut become very sore. This weekend I will be fitted with a very attractive nasal-gastric tube (NG tube) that will allow feeding through the nose during periods when my mouth is too sore to eat or swallow. Scrupulous oral hygiene will be employed during this time. If the pain gets bad enough, I have been promised dimorphine (Heroin!). So things aren’t all bad.

There-on: By day 21(although this varies widely) we hope that my new immunity will be in place and my body will start to rebuild to normality. However, the major danger during this period is Graft vs Host Disease (GVHD). Basically this means my new immunity will recognize my body as ‘foreign’ and start attacking it. This will be somewhat controlled by the continued use of the immuno-suppresant cyclophosphamide. There are various degrees of GVHD and although it can ultimately prove fatal, there is also a benefit to a slight amount of GVHD. Namely, it can help ‘scour out’ any remaining leukaemia and prevent a relapse of the disease. So I’ll hope for a very slight amount 🙂

Thanks again for all the support, I will update as often as possible.

Until then, follow your bliss! Don’t let fear and anger spoil the gift of your life. Oh, and no white socks with black shoes. Toodlepip, milt.

I must commence today’s missive with an enormous & incredulous THANK YOU for the amazing number of guestbook messages of late. I am so touched. They are a great source of support, warmth, love and encouragement. Bridget, Alex, Olga(my mum) and I would like to thank you all. I will start the challenge of responding to them all, as soon as I can. This has been an amazing personal journey and it is just phenomenal that so many people from around the world are right here beside me- it has a created a complete reassessment on my view of humanity.

The Last Supper: Day -1

Oh, bliss. My transplant coordinator tells me that I am the best-condition Day -1 patient she has seen, and that I can spend until tomorrow 8am, AT HOME. When I came in, I collapsed on the sofa. Bridget, covered me with a duvet and put “our” beautiful siamese cat on top of me. ‘Monkey’ is an amazingly intuitive and healing cat and just sort of hugged me, purring continously until I fell into a comforting 2-hour sleep. Hurrah for cats!

Had a last family meal and non-alcohollically toasted a ‘Bon Voyage’ to my sister’s marrow: May I accept it as my own. Alex is going in tonight and will have the procedure, of removing 1litre of bone marrow, tomorrow morning.

This just in! It so happens that Bridget will be having PMT when I am having my BMT. She will hopefully find some TLC in the form of a BLT.

Will spend the rest of the day shaking this dizzy feeling, ptuting up a vid and some pics and enjoying what will surely be my last moments at home for some time. Y’all have a great day, ya hear?

Managed to get some sleep last night, despite a sore Hickman line site and yesterday’s lingering problems. Most of the dreams were rather nightmarish- Ancestral home with bodies in the basement, unwanted intruders, a shadow of evil draped over all affairs…

However, in the early morning I had a beautiful dream of pure lucidity: In the midst of a moment of danger in my dream, realizing my own consciousness, I floated from the scene and flew up into an incandescent night-sky. Flying with pure lucidity through a dreamscape is an undescribably ecstatic feeling. I have been practising lucid dreaming for 15 years now, the ability to ‘awake’ in one’s dreams, has been the greatest skill I have ever learnt and it is most welcome at this time. It allows me to both challenge the disease within me (using visualization), and transcend the fear and attachment of the material world.

I had my penultimate radiotherapy session this morning, and having made the ironic selection of the ‘Disco Classics’ CD from the hospital library, I enjoyed a 6m23s toasting on each side (while listening to “Disco Inferno”) I am on a 4-hour cyclosporin infusion at the moment and so far, no painful stomach cramps. Just a dull headache and the general cornucopia of medication that is now de rigeur. Feeling pretty groovy. Will report back after my LAST radiotherapy session this afternoon. Ciao for now.

Tick-tock: Day -2

Last Radiotherapy session done. Naturally, I was thinking “last one, last one” all the way through it so those 2 x 6-minute-23-second blasts seemed to take a lifetime. It reminded me how very flexible time is. I must be disciplined and not become too impatient during these final few weeks: “Me, Here, Now” and so forth.

In the future, they will discover the hormone that effects our sense of time, and help us manage our experiences through difficult, or enjoyable experiences. One pill will make it feel as time is zipping by: WYHF (“When You’re Having Fun”) Another pill can slow time down to a trickle: WYHC (“When You’re Having Chemo”) WYWTM(WLK) will be the most powerful drug, forcing time to screech to a dead stop. (“When You’re Watching This Morning with Lorraine Kelly“) Later, taters.

Okay, now I know how a microwave meal feels. I experienced my first two TBI (Total Body Irradiation) radiotherapy sessions today. I will attempt to describe it in a single sentence. Being packed in with ice-bags while receiving 15 minutes of enormous X-Ray energy, with a pan-pipe pop soundtrack, leaving one slightly concussed with a massive dose of sun-stroke. Not on my top-ten recommended ways of spending an afternoon. MiltVid to follow when I have the (non-radioactive) energy. Okay only 2 more days like this- I will do this for myself and my loved ones. “I get knocked down…”

Hiccup Havoc

A side-effect of the last two days cyclophosphamide chemotherapy is rather violent hiccuping. Why? I have no idea, but I have a video (to follow) that documents this strange phenomenon. I also discovered today that there is a medical cure for hiccups. I forget the name but an injection of a small amount of this magical mixture, cures hiccups in a couple of minutes. There is a limit to how often it may be taken, so I was stranded like a gulping fish on occasion. Hopefully this will pass soon enough. Okay 2 more days of Radio, a day rest and then it’s “SisTa bLoOd” time! Bring it on.

Today’s blood test:

Platelets 105 (+2) Hgb 7.9(-1.1) Neutrophils 2.2 (+1.7)

Because of the low level of haemoglobin I will be getting 2 units of blood later today. I really think we could cut out the ‘middleman’ with blood donations, and I can just suck blood from the necks of willing volunteers. My crap joke: A beautiful woman comes up to me and says “Please, please suck the blood from my neck” I reply “Sorry, darling, you’re not my type” Hardy-ha-ha.

Just starting my 2-hour Cyclophosphamide, administered by a very kind, very passionate preacher-nurse. (This I am very fine and accepting of, but the literature I’ve now been given is a little worrying)

In the happy eventuality that the BMT is a success, and I have no further leukaemic relapse, this would be me my last major chemo session, ever. I still have 3 days of TBI (Total Body Irradiation) RadioTherapy, 4 low-dose methotrexate injections and a long, long recovery ahead of me. But still, a possible farewell to chemo is an amazing feeling. I realize that a great challenge lies ahead: To assimilate this immense expense and try to rebuild my life with this new sense of meaning.

Follow your bliss, people, live your fullest lives! Milt x

One day closer to the biggie, and am taking it all in
my stride. Blood test this morning:

Platelets 103(up) Hgb 9.0 (up) Neutrophils 0.5 (down)

So it looks like, in general, my bloods are finally
playing game. This is all academic now as this particular
blood system is going to the great gig in the sky soon
enough.

Had my first chemo today: A 2-hour cyclophosphamide.
One again tomorrow and I will be on a continual mesna
drip till monday, so no ice-skating for me this weekend.

Feeling just fine. Once again I would just like to say
how amazing this whole experience has been. I had no
idea that so many wonderful people would respond with
such love and generosity of spirit. It really is incredible,
much appreciated and has changed my life.

Peace n’ chocolate,

Milt x

Hello everyone! Today I experienced the joy of a Hickman
line replacement, performed by the very capable and witty
Dr Ash Saini. I was awake during the operation (local
anaesthetic) and watched Ash remove my existing line
and replace it with a monster triple-lumen in the same
vein! Despite repeated explanations, I still don’t quite
understand how he managed it. I feel slightly sore and
faint but otherwise just fine.

After the now obligatory faffing about, a room was eventually
found for me on Weston Ward so I am back in hospital
mode again. I may be moving to Dacie Ward early next
week but this is as yet unconfirmed. The room is shabby
but clean and a decent size, and would respond well to
miltification.

Chemo starts tomorrow and it is both familiar and daunting
to be back in hospital facing this crap-ola again. However,
once I am settled and happy in the room I will feel much
more relaxed about accepting the treatment. So happy
poisoning tomorrow!

Toodlepip! Milton.