Category: Health & Training

Okay a super-quick message. I am off for a last minute short holiday in Greece. My plane leaves in a few hours, time to start packing methinks. The Med will be my med tomorrow! After Greece, I am joining Bridget to teach on the IGF (International Guitar Foundation) Guitar Summer school in Bath for a week. I will update when/if I can. I am still a bit anaemic (10.0hgb), but my blood is otherwise good, and I am feeling pretty fit. (I have played squash 3 times in the last week and am yet to lose a game…) This vicious cancer has taken up the last 9 months of my life and I would like a break!

Oh today I had my first post-BMT haircut- what a great feeling to be (relatively) normal and do normal things…

Yassus!!

I have finished my Cyclosporin! Feels great to be rid of it- Imagine, I may not have to take any more ever again. Just penicillin and septrim for a few more months and then my immunity jabs (mumps, measles, rubella etc.) I am grateful and humbled not to have experienced any GVHD to speak of. (Even though my blood system is, at last count, 93% grafted) I hope that GVHD is kept at bay now that I am no longer on immuno-suppresants.

What have I been up to? Well, I was best man at my sister’s wedding last week (pictures to follow). It went very well, a rather special event: My sister looked fantastic, Bridget played classical guitar beautifully for the ceremony, no-one fell over and I apparently looked pretty healthy. I was grateful to be around for it.

Yesterday I played my first post-cancer squash match. I was worried that I wouldn’t be able to play, but I lasted an hour and ended up winning 5 games to zero! (9-6, 9-2, 9-0, 9-1, 9-5) Apparently it was not a pity performance from my opponent, so I was very pleased with myself. I am playing again tomorrow, so let’s see how it goes. I am now capable of walking several miles a day without issue. Bridget no longer has to adjust her pace. I may try to get back into jogging again although that is a rather scary concept. I get a little stressed revisiting my old activities, as I fear not being capable of them.

The mornings are still tough. It is like a wall of hopelessness, sorrow and depression paralysing me. I just have to lie down for however long, feel it fully then, when possible, get up and go about my day. I have been offered anti-depressants repeatedly, but am not taking them. Why? Well, because they take 2 weeks to kick in, there always remains the hope that things will improve in the interim. Also, I have found depression to have appeared in my life at the brink of important developmental stages, and am loathe to obfuscate the process. Maybe I am just being silly, but I’d rather be naturally moody than artificially ‘chirpy’. Then again, without drugs, I would now be deceased, so it is not as simple as drugs=bad. But for the time being I am coping ‘au natural’. I guess, I don’t want to miss real issues and opportunities for growth, painful as they might be. This is where I am at the moment, anyway. All I know is that sometimes, when things are okay, I momentarily forget what I have been through and it almost feels like earned happiness.

I have just had a cheese omelette with a watercress salad with olive oil(extra virgin naturally).

Back from the Lake District. Bridget and her family took me for a great 7-mile walk around Ullswater, starting with a steam boat crossing.

I would like to send my best wishes to all of those going through the cancer fight today.

Day 100 is here! It has oft been mentioned in hushed, reverent tones as a far-off mystical land that I may just reach one day if I am really, really good and lucky. Well it’s here. What’s more, I have a bone marrow biopsy on Thursday that may offer a little closure of sorts.

Bridget is being extremely patient and supportive with me. I am doing some sort of exercise each day: a 1-6 mile walk, a 1 km swim or a light jog.

Thank you all for your concern about yesterday’s horrible events in London. My family and friends are all well. The death toll has now exceeded 50 people with over 700 injured. Our thoughts are with all those directly and indirectly affected. Senseless, cruel and evil acts against innocent people is the only description I can make. The perpetrators can never hide their own personal responsibilty and shame behind any ideology. Damn those people who think only they know the truth and who have the arrogance to elect themselves as judges & executioners of others. But today, I am proud to be a Londoner and witness my fellow citizens get back to their work, lives and dreams undeterred.

Monkey was extremely smelly yesterday, so Bridget decided to wash him. We purchased some ‘Cat & Kitten Shampoo’ and read the instructions carefully before commencing the procedure. I will now give you the instructions on the bottle followed by what we feel are more realistic directions for use.

Instructions

•

Wow- closer and closer to that big day 100- and what a journey it has been. Am coping better these days- still a lot to deal with but no longer do I feel paralysed with depression- am just getting on with things now. Namely a daily walk (1-3 miles), guitar practise, some preparation for work, loving the cat etc. Some tough times still but am just carrying on with life as bravely as I can.

Time to thank Radley College YET AGAIN. Bridget and Simon had worked really hard, putting on another charity concert for the Anthony Nolan Trust. The rain held off this fantastic oudoor affair with a BBQ, Big Band, Soul Band and excellent Elvis tribute band. It was my first big day out since hospital and I (and my sis) was greeted with great warmth and support. Over

A big thank you for all the support out there- it is really appreciated.

Am happy to report a glimmer of hope in my mood, and it centres around guitar practice. Have felt inspired to start working on my classical and jazz guitar again. It is really tough after months of set-back- but adopting a “Me, Here, Now” approach really helps. Bridget and I are planning a “Return to Life” Guitar Duo concert over Christmas-(in a church in West London) you are all very welcome of course.

I’ve ditched the pills for a few days now- I’d rather feel the truth of how I feel- as excruciating as that might be- (the mornings are particularly desperate). But I guess our characters are determined by how we behave at our lowest ebb- so it’s time for me to decide who I am again. I walk as much as I can each day and now practise with as much care and gratitude as I can muster (easier said than done!)

I am not ashamed to admit that disappointment and depression are now part of my daily life- there are very real issues in my life- but hey I’ll just have to learn to hang with them for for a while. I will continue to report from the frontline with honesty and candour-more soon…

Follow your Bliss- Milton

I cannot tell a lie- things are tough. Have been prescribed ani-anxiety pills- Am not sure what is happening to me other than writing crap poems.

Crap Poem #1

I don’t care if Tim wins or loses,

I don’t care who Davina chooses,

I don’t care if Marco is gay,

I just want to feel okay.

Crap Poem #2

Dogs can just poo and be everywhere,

Birds can just take off without a care,

Cats are too cool to have a name,

So why are humans born with shame?

On April 23rd some very kind boys at Radley College held a benefit concert on my behalf and raised a most impressive

Hello again. Thank you for your continuing support despite my distance from computers. Quick recap: I was readmitted to Hospital on the 14th June with suspected infection. I received the whole gamut of antibiotics that they had going(“What’s that?” “Dunno. just stick it in..”) and I had a vomitous, coughing uncomfortable 2-week stay. At which point there were less symptoms, they had run out of antibiotics anyway and I was sent home (2 days ago)

How am I? Physically: Very, very weak. Managing 1-mile a day walks. I feel like an empty shell.

Emotionally, this has been the worst time for me in the last seven months. It is as if when I am so close to a physical cure, the emotional thunderstorm hits me all at once. Basically, I am depressed. Weepy and depressed. Possible reasons:

Antibiotics are said to cause depression, and I’ve had my fill.

The months when I had to fight physically with positivity have caught up with me and its just a natural rebalance.

Reassessment of life is not easy: Same old problems and some new ones added.

I am reborn and this is the pain of birth.

Self-pity?

Just a physical setback that links with my mood that will ‘turn around’ once my hair is flowing Samson-like (One of Bridge’s theories)

What will I do?

Cry

Sleep

Eat

Walk in the park.

Talk to some important people to me.

Feel it. Sit with it. Live beyond it.

G’day.

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

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

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

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,

*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

Hey, hey.

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:

Apologies for the hiatus and many thanks for the many messages of support during this tough time – your kind concern for my well-being is much appreciated. Cheers.

Good news first: I am definitely at the engraftment phase and my counts are slowly and steadily rising (WBC 1.3 Neuts 0.5 Hgb 10.0 Platelets 126)-belated kudos to Sandra. So this is it, Alex’s cells found their way to my bone marrow and are definitely multiplying. It’s incredible. However: the less-than-good-news, my current physical state is subduing most feelings of relief or elation. I really appreciate the good news, but I am so done in by months of treatment that I can hardly function for exhaustion and deflation. Symptoms? Nausea (I can even retch by thinking about a smell), weight loss, exhaustion, insomnia, muscle deterioration, diarrhoea, listlessness(not making any lists-apart from this one), headaches, sneezing, general weakness, nightmares (even the classic ‘Exam Anxiety’ one- you know when suddenly you remember that you have an exam in an hour that needed 2 years of study but you can’t even remember the topic) and everything smelling and tasting bad. Oh well, looking forward to when I can report improved symptoms.

Anyway the docs all say how very well I have done and have ‘sailed through’ the treatment (If that’s the case, Heaven forbid a lesser (dinghy or canoe) course through) So grateful for that as I guess they’ve seen it all. Laying low and trying to tick off the days with as little discomfort as possible- I should be home soon. I can’t believe I can now say those words.

Onward. – Milton.

OK, no over-reacting please: It looks like my counts have been rising for the past couple of days. This may well be due to Alex’s cells having engrafted and doing their thing. So we will be tracking that progress and any signs of GVHD closely from now on.

So how do I feel? Answer: Utterly, utterly exhausted – Sick & tired of being sick & tired and in need of a REAL holiday- one that doesn’t involve being poisoned,being unable to move without trundling around a huge beeping monster, relying on other peoples’ generosity for my blood, being isolated in a small room for weeks on end and all with a sustained background of general nausea and discomfort. No, I didn’t see that one on the Holiday programme.

So Milt’s ideal holiday right now? Fairly predictable. Somewhere caribbean: Blue skies, fine sand, clear waters, fresh air, learning how to surf with dolphins offering congratulations and guidance, playing guitar with a great band for appreciative people under inconceivably star-speckled night skies, lucid dreaming in a luxurious beach cabin, freshly-squeezed superjuices, delicious, satisfying healthy food, growing stronger and healhier every day, no time, no pressure, just a sense of healthy, calm relaxation in an egoless, undemanding, uncompetitive, timeless summer of pure peace.

Okay back to my build-up instant soup, anti-sickness drugs and (reduced) morphine infusion. Sweet dreams, milton.

Yo! (And there ends my bid for the ‘yoof’ market) Today, my nose-tube malfunctioned again. But this time no amount of manipulation, coaxing, pressure from a syringe or last-resort-Coca-Cola-flushing managed to shift the blockage. So I pulled the tube out – far easier than insertion I can tell you. So in order to avoid the ‘nasal-grastic tube insertion blues’, I decided to switch from cyborg to human eating. My swallowing is a lot less painful so this is now an option.

I’ve been so thrown around by chemicals that I have very little appetite. Those of you who have been through cancer treatment may relate to me here: I can be put off food very easily (the odd texture, a chemo flashback and worst of all, the dreaded hospital kitchen smell) So to have had some relief from forcing myself to eat, thinking about food and having to balance nausea and hunger, was very welcome indeed.

The sooner I move to a fully automated human being with all natural functions taken care of the better. Then I could spend my time doing the things that make a real difference to me. Like sleeping all day.

Good night! Milt