Category: Leukaemia

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.

Greetings, people. Well, turned up to Hammersmith Hospital
today with my not modest amount of luggage and equipment
and after a modicum of flapping, it transpires that “there
is no bed for me today” Apparently I was to wait
for a phone-call or call to check or something- I thought
it was all booked in but I guess such is the topsy-turvy
world of cancer treatment. No worries, I will move in
tomorrow *almost definitely*. The Hickman Line replacement
is set for 9am tomorrow (I wonder does it go in the same
vein or a different one? Will let y’all know). Not a
wasted visit, I had the-now-obligatory blood test and
the weigh-in. I am now 11.5 stone (74.9kg). Heavier than
pre-leukaemia! That proves my amazing scientific fact
of the day:

EATING ALOT OF CRAP FOOD CAUSES WEIGHT GAIN

Yes, you heard it here first, folks! We can all accept
the Nobel Prize, together. (If the stage can support
the weight)

Burn, Baby, Burn!!!

Also today I had my pre-Radiotherapy talk and signed
the consent form to allow them to play Captain Picard
with me. Here are the possible and probable side-effects
of the 6 zappings:

• Complete hair loss (I can now float in my bath and
  pretend I am a pre-cog in minority report)
• Destroy Cancer cells Well that would be nice while
  I’m there .
• Nausea Yes, I know.
• Mucositis Hence the nose-tube for feedings. Idea for
  new cookery program called “Can’t Eat, Won’t Eat” where
  celebrity chefs create gastronomic delights that can
  fit in a 5mm tub
• Fibrosis Bit worried about that one- I hope to enjoy
  a life of hiking & cycling etc. But I guess I need
  a life to start with…
• Increased risk of cancer Bugger.
• Infertility Yes, I know. Hence the little visit to
  the bank before Chemo started.

This machine costs

Just got back from the New Forest and am packing for
hospital tomorrow- not very effectively as it happens.
It’s hard to believe I will be away from home for a couple
of months! Feels like the last day of the school holiday.
Unfortunately, It’s impossible to call in sick!

It was great to get away, and we managed to cycle an
average of 8 miles a day. To begin with, I had absolutely
no energy and my lungs and legs would burn constantly.
But I managed to get into it by the third day. What makes
cycling so great? It’s peaceful, exciting and nostalgic-when
I get through this I will definitely do ALOT more. Not
to the level of Lance Armstrong, naturally: I am only
aiming to win the Tour De France once.

Will report back from Hammersmith Hospital- Here we
go! love, miltx

Another blood test today and… Platelets are up, haemoglobin
is slightly down and neutrophils have crashed to 0.8…well
I have to face it my blood system is just broken for
the time being. Oh well, will be getting a new one soon
enough! Amazing to think that my blood system will be
female from the 8th April. This will no doubt make me
more intelligent, sensitive, capable and attractive-
so look out!!! The doc decided to give me a GCSF injection.
(An injection in the arm that boosts the production of
blood cells) This should tide me over until Hammersmith
Hospital next Thursday. I am reading a vampire book at
the moment so rather obsessed by blood – all visitors
please leave your scarves at the door- I AM THIRSTY!

Had such a great time in the New Forest that I am returning
immediately – its the perfect retreat before my weeks
and weeks in a small ward being carefully poisoned by
trained professsionals.

My throat is almost completely better- thanks for your
concern- so I am talking again, much to the consternation
of those around me. Well just packing the car will update
later. The topics? My near-death experience, lucid-dreaming
and my life philosophy- be there or be…somewhere else.

Ciao

Milt x

Had a blood test at Charing Cross and it seems that
at long last, my blood counts are starting to improve:
(Neutrophils: 2.2 (ok) Platelets 43 (low but better)
and Haemoglobin 9.1 (slightly anaemic but not too bad)
It seems that the workers in my bone-marrow have finally
finished their extended strike and are now grumpily resuming
their duties: “Ey op. It weren’t like this in my
day- all this cancer and artificial chemicals and the
like- I don’t know- I really don’t…” I am not
entirely sure why I am characterising a stem-cell as
a middle-aged yorkshireman- but there it is.

My throat is still drier than a non-alcoholic sandpaper
shop in the Sahara desert on a particularly dry day.
Fortunately, I have some semblance of an immunity now
as well as antibiotics, and both homeopathic and western
mouthwashes to prevent it blossoming into a dangerous
infection. Still painful when I talk or laugh or eat
but I now have painkillers and I am sure it will get
better soon. So all is cool. More later!

Yours in silence,

Milton 🙂

Forest for Rest

We are off to the New Forest (Beautiful area of South
England) tonight for a day or two. I love nature and
hiking and this will be a very welcome break before the
months in hospital. I have some forest walks planned
and will take some pics. I am off to pack: The bare essentials
plus a couple of books and a guitar. Hopefully will see
some fairies in the wood. (Little mythical creatures
not men with good dress sense and a thorough knowledge
of musicals)

Toodlepip and tally-ho!

Milton of Hampshire

Typical, really. You may have noticed a lack of correspondence
with the fabulous Red Class recently. The reason? Well
one parent complained about the class communicating with
me via the guestbook saying that it was “promoting
chat-room behaviour” – so all communication wirh
me is forbidden by the Head. Hmmm…Now I understand
parents being protective of their children but this seems
to me irrationally paranoid. (Remember the good old pre-internet
days, when no child was subject to abuse? Er, no.)

What children (and some parents) need to learn is discernment:
good/bad, positive/negative, dangerous/safe and not a
complete rejection of a communication medium i.e. the
Internet. (Which they WILL be using very soon-is this
parent hoping their child will magically BYPASS the internet)
Is that parent worried that their 4-year old will go
out and buy a computer (cash or credit-card sir), arrange
the installation of broadband, handle the idosyncracies
of WinXP or MacOS X and fall into a den on paedophiles?
If they could do all that at age 4, they should be running
daddy’s business.

There is a difference between letting your child run
around in a playground while supervised and letting her
wander the streets of London alone. Let’s face it: a
responsible teacher relaying messages between a class-room
and some non-dangerous guy with cancer is very different
from a free rein of the internet.

This is just an irrational fear of a new medium. The
telephone may have paedophiles at the end of it-so you
SUPERVISE its use. The television may display inappropriate
images, so you SUPERVISE its use. So what’s the plan
with the internet and kids? SUPERVISION!

My suggestions for classroom subjects of the future
(parents welcome) to Milton’s triple-S course:

Self-Respect: Valuing oneself and others, common courtesy,
the ability to say ‘no’, dealing with bullying and abuse,
commnicating worries and fear etc.

Safety: Awareness of potential dangerous situations
and how to avoid them.

Social Science: How advertising works with self-esteem,
Addictions: sugar, caffeine, alcohol and other drugs)
Healthy eating (What is and isn’t real food) etc. etc.
etc.

Those courses would do much more to protect children
from a whole variety of abuse than some paranoid parents.
I wish I was taught them when I was a child (would have
prevented my abuse)

So now, Red Class no longer have Milt as a role-model,
and can return to their very safe and caring role-models:
Tony the Tiger, Coca-Cola, the latest film merchandising
attack, Ronald McDonald, professional wrestling…

Here’s to Red Class, may they (please) live full, fearless
and meaningful lives!!!

Yesterday saw a long & heavy day at Hammersmith
Hospital, the location of my BMT to come. My sister and
I received the following tests:

Lung Function. My lungs hold 5.5 litres of air-not sure
if thats good or bad.

ECG. Very 70’s sci-fi electrodes around body and machine
with a nervous needle drawing on graph paper. Apparently,
I have a pulse.

Blood Tests. 12 test-tubes of blood taken. My platelets
are 21(low), my Haemoglobin is 8.9 (fairly anaemic) and
neutrofils are 1.7 (low). Looks like blood transfusion
on Monday, thanks blood angels!

Throat and Nose Swabs. Because of MRSA they had to stick
massive ear-cleaner things down throat and RIGHT AT THE
BACK OF NOSTRILS. Aaaargh- still pulling faces about
that one.

Chest & Skull X-Ray. They found bones under my skin.
Big deal.

Then a long talk with my 2 new doctors, who explained
all the procedures, possible side-effects and risks of
the BMT. Then I signed consent forms giving them permission
to do all those lovely things to me. A word of warning:
If you ever have the misfortune of going through something
like this, make sure you fart before you go in. I was
in there for ages desperately concentrating on not playing
the trouser trumpet. I think they misconstrued my pained
expression.

Anyhow, am all signed up and ready to go. Here’s the
schedule so far…

31.3.05 Admitted into Hammermith Hospital. Revamp room
immediately.

1.4.05 Operation to remove my Hickman line and replace
with a 3-loom variety as they are planning some serious
servings of drugs.

2.4.05-3.4.05 2x twice-daily Chemotherapy treatment

4.4.05-6.4.05 3x Twice-daily Radiotherapy(Total body
irradiation)

7.4.05 Day off. (Maybe Alton Towers-just kidding)

8.4.05 Nose-catheter inserted for feeding (my mouth
and throat will become too painful to eat normally) Alex
gets general anaesthetic and has operation to remove
large quantity of bone marrow tissue. She will stay overnight
and be very sore for a week. I receive her stem-cells
through Hickman line.

9.4.05 A few weeks in isolated ward, trying to prevent
infection with hygiene and massive antbiotic doses, constant
monitoring of condition, feeding through nose-tube. What
a party.

That’s the plan so far- of course I will be documenting
my progress daily, on miltlatest as will as producing
pics, movies and music.

The Milton Eat-o-thon

My dietician at Hammersmith has recommended a high-fat,
high-energy diet leading up to (and beyond) the BMT.
I told her my normal diet and I had the surreal experience
of advice such as “Instead of grilling your chicken,
try frying it”, “In addition to your apple
snack, have a chocolate bar”, “Add lots of
sugar to your muesli”, “Follow up your dinner
with a generous amount of ice-cream” and “Add
lots of chocolate, cream, biscuits, fried food to your
daily diet”

It was like every health advice in reverse-but apparently
the BMT process will kill loads of my energy and research
has shown better results when people eat ALOT leading
up to it. So I have been eating like crazy-even forcing
down ice-cream (which I may be the only person in the
world not to really enjoy), large meals 3 times a day
and eating chocolate between meals. It’s a tough job,
but am trying not to make it a chore!

Farewell Dorothy

I am very saddened to report that a fellow patient of
mine, Dorothy Shammaa has passed away. She was a lovely
lady and I really enjoyed our chats about life, music,
art and nature. Both of us were often neutropenic and
in isolation and we had fun exchanging silly card messages
via the nurses. Dorothy stars in “The Present” video.

Dorothy was a lovely, warm-hearted and gentle soul and
my deepest condolences go out to husband Emile and son
Marc.

Best wishes to all of you, lead your fullest lives!!!
-milt x

Well I finally staggered out of Charing Cross Hospital
on Friday 4th March at 3.30pm. It was a strangely melancholy
experience to leave the ward. It was home to such a deep
personal experience that perhaps it was painful to walk
away from the location. It was witness to such incredible
human sorrow and courage and it will remain a part of
me forever. The smell of the food, however, I am happy
to leave behind.

See the last day in “The Bright Side” video!

Come Heavy Sleep

It seems the effects of months of treatment have finally
caught up with me: I slept 12 hours on Friday night and
18 hours on Saturday night! Now I am starting to feel
somewhat human again.

Stairway to Heaven/Highway to Hell

The current schedule is that my BMT (Bone Marrow Transplant)
will start in approximately 3 weeks at Hammersmith Hospital.
I have an appointment at Hammersmith Hospital where I
will be x-rayed, ct-scanned, blood-tested and given the
official plan. I will let you know of the news tomorrow.

The BMT is a serious procedure. I snuck a look at a
medical student’s pocket reference book and there it
was:

Bone Marrow Transplant. Mortality Rate: 20-40%

But with ALL(T-cell/Pre-cursor), I have little choice
but to accept the BMT. Statistics are a little misleading,
as in the end I will only be 100% dead or 100% alive.
I will give it my best shot.

Am I scared? Nah….

Take it easy, Milt-heads! Love, milton xxx

Hello all. Many thanks for all your kind support and
concern. So Monday turned out okay and its business as
usual in Phase III, my last blast starting on Monday
28th February. It’s a high-dose methotrexate (that yellow
stuff in the “Singin’ in the Rain” vid). It
is some powerful stuff, the procedure is, basically:

1) 12 hours of fluids in preparation. (These fluids,
like every other drip, are put into my Hickman line.
This is a plastic line (in iPod-white) that has been
surgically planted in a vein to allow painless removal/insertion
of various fluids).

2) 24 hours of the chemo.

3) Uninterrupted fluid to flush out the chemo. During
this time every urine ‘offering’ is tested for pH level
to check that I am not becoming too acidic from the chemo.
Blood tests are taken daily until it is clear that I
have flushed all the chemo out of my body. This usually
takes 2-4 days, but I managed to break some kind of record
by clearing it in 24 hours (apparently I have Olympic
kidneys)!

And that will be my last few days at Charing Cross Hospital
– my home for the past 3 months. Despite being the scene
of much discomfort and some pain, I will take from it
mainly a positive experience and am rather saddened to
leave. Apart from the very, very occasional ‘bad egg’,
the level of care and support of the NHS doctors and
nurses has been simply excellent. What I saw was a lot
of hard-working and dedicated staff doing excellent work
in very difficult and under-resourced circumstances.
There are so many to whom I owe my gratitude. My thanks,
in particular, to the following fine people working at
Charing Cross:

Dr. Donald McDonald

Dr. Mamta Sohal

Dr. Philip Beer

Dr. Natalie Phillips

And the caring nurses of 6 South (Missy, Margaret, Jo,
Vicky, Maribel, Maria, Anne-Marie, “Rainbow” and
all the others my silly head cannot at present remember).

I owe you my life.

The Biggie

So it’s off to Hammersmith Hospital for the Bone Marrow
Transplant. As far as I understand it, it works something
like this:

My bone marrow had decided to create leukaemic cells.
My past 3 months involved destroying these leukaemic
cells to suppress their relapse and to give a window
of opportunity to perform the bone marrow transplant.
The bone marrow transplant means I will adopt an immunity
system that won’t create cancerous cells.

So, we blitz my immune system (through some very heavy
chemotherapy and radiotherapy – leaving me hairless and
I imagine completely frazzled). This is done so my body
doesn’t attack the grafted (new) immunity system. In
the meantime they extract “stem cells” from
my sister, Alex.

Stem cells are produced in the bone marrow and go on
to develop into blood cells (white blood cells, platelets
and red blood cells). While my immunity is suppressed,
I receive a load of my sister’s stem cells. These stem
cells then find their way to my bone marrow and hopefully
start building my new immunity system. The danger at
this point is “graft vs. host” – the new immunity
system may recognize my body as “foreign” and
start attacking it. (The implications range from okay
to not-good-at-all).

If all goes well the process will be 3-6 months long.
(That’s some process…) I know that the procedure is
risky and potentially fatal, but for some reason, I am
not scared. I will be documenting the whole experience
in words and video, so stay tuned…

Love & Music,

Milton

I have only one week remaining in Phase III of my initial
treatment. Once that is completed, there are a few weeks
recovery followed by the Bone Marrow Transplat procedure.
However, the last week of Phase III has been held up
as my platelet level (a blood cell that enables clotting)
is too low (66 when it needs to be above 100). My schedule
has been pushed back a week already, and if the platelet
level is not above 100 by Monday, then it’s time for
another Bone Marrow Aspiration to see what’s going on.
I have already filmed one of these (“My Aspiration” video)
so am not desperate to have another, but if that’s what’s
needed, so be it. If my platelet levels are above 100
then I continue with my final week of chemo in Phase
III. Then it’s goodbye to Charing Cross Hospital (hopefully
for ever) and on to Bone Marrow Transplant at Hammersmith
Hospital in late March. So fingers crossed, let’s hope
that the low levels are just the cumulative effects of
all the chemo and nothing too concerning. Onward!

Kind Souls

I’d like to take the opportunity to thank the very,
very kind souls who have organized concerts to support
my chosen charities. They are:

Martin May, Valerie May and their associates on Saturday
19th February who are playing in Haddenham in support
of the Anthony Nolan Trust.

Colchester Institute Guitar Department under the direction
of Tim Pells are playing in the Head Gate Theatre, Colchester
on February 28th in support of the Leukaemia Research
Fund.

Renegade Big Band, 7th February at RAM, who raised a
fantastic