Leukaemia

Climbing Mount Improbable

My 2 year Bone Marrow Transplant happened to fall on Easter Sunday this year- so I decided to mark this by hiking up England’s highest point, Scafell Pike. It was a 6-hour trek in generously mild conditions, although the peak was icy cold with terrible visibility. Check out the video if you like. During the hike, I reflected on my experience- and I still can’t fully absorb the enormity of it all. I can accept the diagnosis, but the fact that I am still around, relatively unscathed, feeling healthy & medication-free is absolutely surreal. I am on bonus time, a ghost, fully aware of the astounding miracle of my own existence, isolated from most people in some ways but deeply connected in others. I have no choice now but to live my life fully awake, grateful, astounded, challenged, curious & full of love. (Although I may take a break to watch some crap telly from time to time.)

We are all on borrowed time, and it is only an effort of delusion that stops us from feeling this- If you could truly feel that you only had a finite time on this planet, what would YOU do?

Normal Man

Hey all! Hope you are well.

I have just found out that I am off ALL medication. That’s it, no more*. (*Well for now at least)

How ironic that I have spent so much energy to be exceptional and special, but the greatest news and gift is to be ‘normal’

My blood counts are all normal, my check-ups are every 3 months now and my consultant says it is safe to stop all meds. It feels good.

As it happens I have no time to pontificate on this, I have maybe the busiest few weeks of my life ahead of me with concerts, commisions and gallery exhibitions to sort. (I’ll spare you the details but miltonmermikides.com is there for the interested) Bridget is slowly and surely becoming world famous and Monkey might be the most elegant creature in the known universe.

Must dash -take care,

Milton

Messenger on a Mission Impossible II

My good friend and concert violinist extraordinaire, Mark Messenger is running the London Marathon AGAIN this year in aid of the Anthony Nolan Trust. Please sponsor the man! Thanks!

Holly Daze

So it’s f*cking Christmas again. Jolly f*cking ho-ho-ho arsing Christmas. Every year is the same ritual. I swear that THIS time I will absolutely veto the cynical-commercialized-such-a-swell-time-chocolate-rush-inducing-catalytic-tv-gazing-spirit-numbing-reindeer-jumper-wearing-uncle-farting farce that is the season to be f*cking jolly. But sure as buggery I will be drowning in the herds of last minute shoppers on Oxford Street on Christmas Eve, desperately trying to delude myself into thinking that the Beano annual 1974 is the IDEAL gift for my blind aunty. Well not this time. This time I’m gonna resist any softening in the heart, and scoff at the little choir boy’s puberty-tinged rendition of ‘Little Drummer Boy”. This time I’m gonna give nothing and refuse all gifts with an arrogant shrug. This time I’m just going to listen to Avant-Garde Jazz, eat sushi, burn my old decorations, declutter and wear Hawaiin shirts. I will jog through the Queen’s speech and not smile at any children. I will cut across anyone who attempts to wish me a Merry Christmas with a loud, slow lecture about jam. This time I will be immune to the tiniest drop of Christmas spirit.

Ooh look! some twinkly lights…

P.s. Merry Christmas, I love it really.

Bi-Annual Report

Two years ago I was diagnosed with an advanced condition of Acute Lymphoblastic Leukaemia (ALL) I was rushed to hospital and spent much of the next few months under treatment. I later discovered that the chances of me witnessing this two-year landmark were about 1 in 3. (30-40% survival rate)

So it was during a gig last night that I was struck with the (questionable) logical insight that I had a 60-70% chance of dying by the end of the set. I came close when the singer managed to forget the melody, rhythm & form to “Unchained Melody” in front of an attentive, art celebrity audience. But I don’t think that really counts.

So how do I feel? Well the answer to that question seems to be a string of paradoxes:
Shell-shocked yet grateful. More isolated from others yet more deeply connected. Acutely aware of the fragility of life yet more fearless. More confused and unsure of any beliefs, yet more lucid and clear. I feel like a ghost walking among the living, yet more alive than I have ever been. As you can see, elucidation escape me. I shouldn’t be here, yet here I am – and more glad of it than I can express with any justice. Again I must thank Bridget, my family, my close friends, colleagues and extended network for all the incredible support.

Last Sunday, my band, Rat Park (conceived before my illness) had our first public performance at the Park Lane Young Composers’ Symposium. It was an uncompromising performance in terms of style, vision and content in front of a knowledgeable, academic, critical audience and it went down really well.
We have our first full concert at the Guildford Music Festival in March 2007. It feels good.

Nothing is guaranteed and we all have a less than 100% chance of making it to any future date. This is both sobering and inspiring. If the next two years were your last, how would YOU want to spend them?

Follow your Bliss,

Milt ๐Ÿ™‚

Hallo Spleen

Okay, okay, I know.

I keep promising that I’ll ‘write again soon’- I really mean it at the time, and then despite a gnawing guilt, it gets to about a month before I update. To be fair, I am usually at miltchat with my leuka community so I am very much Net-present, but I don’t like to see digital cobwebs here- particularly with my stats report telling me that this place still gets daily bona fide visits.

“What have I been up to?” I hear you earnestly inquire- (although, in fact you are rather quiet today). Well..

My 2 days a week ‘Research’ at the Royal Academy has overflowed, but its all good clean creative fun so I’m happy. I also have 3 jazz guitar pupils at the Royal College of Music, a real treat. I have a couple of commissions at the moment for my composition work- love it, more please. My PhD is progressing faster than I feel I deserve, I have even been given an estimated due date for completion(July 2008). Considering I started in Jan 2004 (with a full-time job) and then had the little matter of acute leukaemia and a bone-marrow transplant in the middle of it, I think this is pretty good going. Of course it will mean so much when the air-stewardess desperately calls for a doctor on board, and I treat the suffering man with a very therapeutic lecture on rhythmic analysis.

I have another EGO concert in the diary. 18th March 2007 at the Guildford Music Festival. My trio Rat Park will also be performing that week. If you come along I might even talk to you if I’m not too busy being hoisted up on the shoulders of the townsfolk and being paraded jubilantly around Ye Olde Guildford. (That was for my American friends)

Health-wise, my visits have dwindled to a 3-monthly trickle, where I discover that my blood counts are perfect (other than that pesky-never-above-12.5-HgB) I almost forget how ill I was. Almost. So I do my best to look after myself, don’t drink, don’t smoke & now crack cocaine only on weekends (Ho-ho) I even gave up cappuccino (seriously) in a fit of masochistic bravado. I do a weight-training program 3 days a week, and cycle, run, or go for a long stridey walk. I eat the right things to, apart from the other night when Bridget and I had an utterly deborturous (can’t spell that one) KFC attack. The guilt is yet to pass but oh, heavenly temptations…

I seem to live a life of to-do lists. Okay 3 hours till that, I can do this, this and that. Although I never quite feel that I’m actually doing anything, always just about to. Maybe I need to improve my ‘Me-Here-Now’ thing as Bridget would wisely advise. Speaking of Bridget, she continues to do wonderful things, while thinking she is doing nothing, she is in a new all-girl Blues-Rock band (details to follow) and has become some what of a lovey hanging out with all sorts of celebs. She also ‘desperately needed’ a pair of very expensive sexy black boots from Russell & Bromley a couple of weeks ago, although I note they are still in the box- so emergency averted, I guess. But yes, she is very cool.

Monkey is quite clingy at the moment and if I am too self-absorbed to give him the attention he deserves he has thaken to a) Standing on my open laptop b) Emitting a haunting elongated whiney noise c) Standing on our favourite clothes or an important document and doing a cat impersonation of Michael Jackson’s ‘Moonwalk’ move from the Billie Jean performance at the Motown award ceremony.

Well there was some quantity (in the absence of wit and profundity) So I’ll leave you there. I promise I’ll update really soon. Ahem.

As an added bonus for reading all this, I will treat you to a work of genius (I sometimes use the word lightly)

Courtesy of a chap called Jeff Brechlin, this is the Hokey Pokey as it would have sounded in the work of Shakespeare…. Take care and oh, it’s halloween so I’m gonna dress up like Derek Acorah from ‘Most Haunted’ and pretend to be possessed with a scouse accent. Just like he does. Milt xxx

O proud left foot, that ventures quick within

Then soon upon a backward journey lithe.

Anon, once more the gesture, then begin:

Command sinistral pedestal to writhe.

Commence thou then the fervid Hokey-Poke,

A mad gyration, hips in wanton swirl.

To spin! A wilde release from Heavens yoke.

Blessed dervish! Surely canst go, girl.

The Hoke, the poke — banish now thy doubt

Verily, I say, ’tis what it’s all about.

— by “William Shakespeare”

Love is in the Air

Admittedly when asked at age 8 about my aspirations, “World Air Guitar Championship Judge” wouldn’t have ranked very highly. (Astronaut, Marine Biologist, Photographer, Artist, Explorer, Dinosaur Hunter, Journalist, Ghost-Hunter and Musician made up the list If I recall)

So it was with a great sense of surrealism (and excitement) with which I arrived in the city of Oulu (“Oh, Loo”), Finland. Incidentally, Oulu is an intriguing blend of cold war austerity and cutting-edge technology (and one of the only places on earth to have reached the level of civilization to offer FREE wireless broadband internet to ALL in it’s city centre.

The 6 days that ensued would fill a book in themselves- if I could remember them that is. But in short, the melange of enormous fun, an opportunity to share my story (“Healing Power of Music” Lecture) and be heard, immense hospitality, new great friendships and surprising emotional involvement made up one of the BEST trips in my life. I am REALLY hoping that I am invited out again.

For a peak of the winning air-guitarist, together with a half-second of me giving a score (5.9!) click here Browsing the site should satisfy any air-head.

A life-enhancing experience. What did I know when I was 8 anyway?

FYB,

Milt

P.s. Air Kisses to Alex Lipsitz (Director of the great movie “Air Guitar Nation”, Dan Crane aka Bj

Sun Update: Day 492

Hope you are all enjoying the summer. I am trying to enjoy the British version. My last full blood counts are, I am happy to say “Indistinguishable from a perfectly healthy male'” My check-ups have dropped to 3-month periods- within 6 months I will be off the last remaining medication (penicillin) and will have my last innoculations (MMR)

Within a two-year time span it seems I have managed to contract leukaemia, undergo severe chemotherapy treatment, achieve remission, then the mother of all radiotherapy sessions, then a full bone marrow transplant, engraftment, continued remission, survived a few infections along the way, rebuilt my devastated body and immunity system. Of course I will NEVER truly escape the danger of relapse but it is as if an alien just leant over and added “+2” to my age. Have I learned anything. Well:

  • Life is short- grab it while you can
  • Take nothing for granted
  • Treatment for leukaemia makes you feel REALLY, REALLY sick
  • Not even morphine can make “Trisha” bearable.

FYB, milt x

Careering, of course…: Day 419

Gig last night in the lovely PictureDrome, Northampton (An old-style cinema converted into a plush music/comedy/film venue. It was just Bridget and I (2 guitars & voice) playing Jazz, Blues ballady stuff. It was a nice venue but people just talked loudly through the whole set, which is slightly depressing. I also got to sit in with the next act, an acoustic guitar duo (Graham Roberts/Geoff Tooley) for some Jazz/Latin instrumentals. Good fun. It always strikes me that careers such as music must have the worst length of study to income return ratio of any undertaking. Lawyers need a degree and a few years before earning loads of money at the bar (and presumably spending it in the bar also). 8 years total? A doctor’s training- 10 years before they can hack at you and not giggle at the word ‘penis’? Now consider that most of my STUDENTS at the Royal Academy and Royal College have been training for a minimum of 10 years- My musical peers have been training for 15 years to 40+ years. And by training I mean BOTH Academic and Practical and usually not confined to term-times- we are talking a DAILY grind here. (Many of my musical friends feel lazy if they don’t practise every day) Are musicians paid proportionately for their work? Er no- I know some tremendously talented and dedicated musicians who in their forties are still struggling to pay rent, let alone own their own houses. Some of the most intelligent, creative, talented and inspirational people I know earn about the same as a Tesco cashier. Last night Bridget & I, drove over 2 hours to be largely ignored for

Diplomatic Immunity

My childlike immune system has, according to my medical team, recovered enough to be treated to some lovely immunity jabs. Today I had a serving of Revaxis (Tetanus, Diptheria & Inactivated Poli) in the left arm and Pneumovax II (Pneumoccacal vaccine) in the right. Big deal. I probably ingested all of those during my last visit to KFC. Measles, Mumps and Rubella on their way. Anyway, I got a sticker for being really brave, but unfortunately the nurse was all out of lollies. I didn’t make a fuss, as it wasn’t really her fault, but I have since wrote a formal letter of complaint. I want my lolly.

Milt x

Running Commentary: Day 415

Just completed the 10K Charity Run. The total raised so far is

One of those days : Day 414

Hey all! I enjoyed my 35th Birthday yesterday. Played guitar most of the day and went with Bridge to see Derren Brown’s live show in the evening. I usually dislike magic but this guy is different, not hats and rabbits just amazingly interesting and impressive psychological techniques bordering on the Jedi. The BEST show of any genre I have ever attended. Just catch him whenever you can and I won’t say anything more. All in all I appreciated this birthday more than any other in my life- I just feel so f&cking grateful to be around.

Please spare a thought for 20-year old Gareth Mace A really cool and brave kid who is going through a terrible time with his treatment. I will be thinking of him in particular tomorrow when I do my 10K Charity run. I will also be carrying around these names with me- If you have a request for someone who is battling or has battled cancer/leukaemia to be included let me know soon- there is just an overwhelming number of brave people to remember. I will do my best for them, you all and myself tomorrow. Just don’t expect me to win ๐Ÿ˜‰

The total raised is a funky

Spain Barrier: 410 days

Not sure if you know about this, but last month I was interviewed by the BBC for the Spanish/South American arm of the BBC Website: It was an article about 4 blogs from around the world (of which Miltcentral was one) You can read the article here- perhaps it will make more sense to you. Looks very nice though and some lovely people have responded from Mexico, Columbia and Venezuela. Ole!!

El Milto xxx

Greece Writing : 409 days

Just arrived back from a weekend in Greece- I went for the 40 day commemorative service of my grandmother’s funeral. A sad but somewhat uplifting event. It was followed by traditional greek coffee and food with many friends and family members. As much as I don’t relate to formal religious practice, it was a very good send-off.

What have I been up to? Well Bridge has been very busy with teaching at Radley and a ‘demanding filming schedule’ (Stylish Holland Park, eh?) Since the last update, I have had my ear pierced (quite fun actually), been training, run another 10K, started weight training again, completed the Academy’s new studios and had a week of events launching them, won my first ever pub quiz, did my first post-cancer function gig (It was refreshing to do a wedding gig when there was no attention whatsoever to my cancer- people there didn’t know or care just any other treated-like-waitstaff musician. I give them 6 months, tops:)). I also wrote an exam for RAM which leads me to my next story:

I had to get 50 16-page exams printed for the monday morning exam.
It was late on a Saturday and I went to a shop that was just closing but said they could do it double-sided ‘no problem’ in the morning.

When I went in the morning, the assistant insisted that double-sided was impossible so after much faffing I said f*ck it single-sided then.
I came back to find that he was printing 46 page 1’s then on top of that 46 page 2’s. So i had to re-sort them all in the shitty shop which took over an hour of my time while he stapled them. VERY badly. When at last it got to the end, he said it would cost

Up Jumped Spring : 1yr 25 days

I love the Spring. When it finally breaks it is never a disappointment and I feel just as good as a kid on the last day of term. Still it took its f&*^ng time.

Been really busy, since the last post: Bridge and I recorded a classical guitar piece at the Academy Studios, I’ve written a new ‘cello piece and had it performed by Nick Allen at the London College of Music, put in 4 funding applications for my work, rehearsed and performed 45 minutes of music for Bridget’s band at the South Bank (check out the pictures ) Rehearsed and performed with a 60-piece orchestra for the MAAM concert at the academy, been interviewed by the BBC for their website, worked on the Academy’s studios and been training for the 10K. Not enough time!

Bridge has been chosen to appear in a 7-series BBC programme in the capacity of the ‘Guitar Expert’. Her job is to be filmed teaching a tv ‘personality’ over 20 weeks in preparation for a big performance. Filming starts Friday… More as it unfolds. FYB, milt x

Pick em up : Day +374

Sophie & Floyd showed up in a women’s mag called ‘Pick Me Up’ So I took the mag’s advice and did, here’s the article. Good on them- they are wonderful people! When she read it, Bridget cried into her cappuccino in StarBucks:) More later…. milt

Gigs: Day +373

If anyone would like to come and hear me play a couple of nice (but free) gigs. 26th April Universiy of Surrey- Electric guitar and electronics improvised concert and May 1 Southbank Centre, Purcell Room Foyer 4pm, Bridget’s band (plus me + bass and drums) -lovely pop, country bluesy vocal tunes with words that mean something and no endless jazz solos. lol. Love to see you there!

Legs : Day +373

Except for having to deal with a recent infection I have kept up the training, runing 3 short distances 4-5k and 1 long distance (7-10k) a week. I’d like to say its getting easier, but it is still a bit of an uphill battle. Am not complaining though, it is an enormous privilege to be able to move at all anytime after November 2004. And with a current sponsorship of

Words : Day +373

The MiltChat forum & guestbook is hotting up with more than 40 wonderful people now sharing their experiences. Survivors, battlers, family and friends, you are all very welcome.

FYB, Milt

News : Day +373

Sad to report the passing of my maternal grandmother, Ismene. She was an amazing woman and will be very fondly remembered. Farewell, Nana.

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