Category: Leukaemia

Got hit with an infection on Christmas eve and an emergency doctor came out Santa-like and prescribed antibiotics. Spent most of Christmas mumbling ‘utter nonsense’ in bed, with a fever. Bridget drove me back on Boxing day, and I have now been readmitted at Hammersmith Hoospital for antibiotic drips, tests etc. All pretty precautionary. Im feeling anywhere between fairly rotten and pretty okay. But to my great annoyance have had to postpone my USA trip AGAIN. I also am rather frustrated, I just want to feel OK and get on with things, but time to be a patient patient again. I will be staying at HH for a few days- I hope I am out for New Year’s Eve. I won’t be able to update often-but wishing you happy in-betweeny-christmas-and-new-year-thing. Bridget has been making the best of it, stocking me up with good food for my stay.

All the best- enjoy the turkey sandwiches… Milton

Okay before we are off to Wales for Xmas, I would like to wish you all very, very happy holidays. Try and leave at least a few brain cells intact after the mindless television marathons, spare a thought for the battery poultry that we devour, learn to forgive the brats for their staggering ingratitude and ability to irritate and practise ways to look surprised and delighted at yet another utterly useless present. Try and repress the urge to attack any family members, throw overcooked dinners through the window, vomit at yet another xmas card whose sole purpose is to show off pictures of their children and show how painfully happy they are, and tell that family member, that no, actually a complete analysis of the interior workings of the late 90’s Ford Mondeo is not the most rivetting account imaginable. But do remember to be grateful for what, and who you have in life. On that note I will pass you our christmas cards and wish you a wonderful time with much love.

This card is for people who are offended by the word ‘fuck’

And this one is for people who are not offended by the word ‘fuck’

Merry Xmas!!! milt xxxxxxxxxxxx

Me, again. Who else? Well I’ve been pretty busy. Things I have done these 8 months post-BMT: Travelled to the Lake District, Scotland & Greece. Played squash twice (& won twice) , cycled dozens of times. Written, with Bridget, four months of articles for Guitar Techniques Magazine, organized a big concert for January, planned a trip to Dallas, Texas for new year, presented a research paper at the University to an excellent response, got pretty drunk at an office party and ended up dancing to ‘Killing in the name’ and ‘Tubthumping’, made some important new friends, been flooded, played 2 gigs with Bridget, practised alot of guitar and have pretty much got my playing at least as good as before cancer, written a rhythmic analysis computer program, been out many times, drunk endless cappucinos, read 12 books, memorized the birth and death dates of 50 composers, 100 artists and the reigns of all the British Monarchs since 1066, won an award for ‘advancements to music technology education’,swam in the mediterranean, chatted with Frank Gambale(world-class guitarist) ,written some new music, had my videos used to train medical students, taught 5 course at the Royal Academy of Music, panelled the entrance auditions at the Royal College of Music with the fantastic guitarist, Carlos Bonnell, lost some friends, given my sister away(in marriage!), raised several thousand pounds for cancer charities, argued with complete strangers, had the car towed away, caught up with some childhood friends, spent WAAAY too much money on myself and found a new love for life and sense of self-confidence and pride. Is it enough? Not even close!

Today I went to the funeral of the pianist Chris Ross, who lost his battle with leukaemia 2 weeks ago. He was 44, possessed a rare musical talent and love of life. He also had many, many friends. I have to say it was a devastatingly sad experience, but I was profoundly moved and inspired by the courage of Marisa and Chris’ children and the stories of Chris’ life. It was wonderful to see so many people there who had been touched by his life, among them several mutual students and a one of Chris’ nurses (who was important to me also at Hammersmith Hospital) So an excruciatingly sad yet spiritually uplifting day.

So what the hell it all about? I don’t know but at the end of it all, all our life amounts to is what we leave behind in the hearts of others. Nothing more, nothing less. The one that dies with the least regrets and the greatest positive impact, wins.

So time to get on with life… Milt

I’m back. “So soon?” I hear you cry. “Yes”, I reply rather breezily. “Oh” you say. The end.

Well tickets are going- how exciting! Please come by clicking here It would be so nice to meet you and share the experience 🙂

My good friend, colleague and master violinist, Mark Messenger is running the London Marathon in aid of the Anthony Nolan Trust. I am very moved and grateful, please support him! Let me be clear: he is a musician and he is running a marathon. So do the good thing, sponsor him and feel smug for a while. Why? Because you’re worth it.

In other news, I have discovered that despite being a very mellow and peaceful guy; I am getting into arguments ALOT more than I did pre-cancer. Arguing with smokers in non-smoking areas, queue-bargers, rude service personnel, tele-sales people, Jehovah Witnesses, jobworths, cheeky students… Come to think of it I guess I’m not that peaceful. Anyway so on SATURDAY, we were out Christmas shopping having a nice time and all. Then on Kensington High Street, near the tube, I was carrying lots of bags and this woman coming towards me blew smoke right into my face. Not in an-oh-so-sexy-and-seductive way, more of I-don’t-care-about-anyone-else-way, which I find less attractive. The weird thing is, I reacted IMMEDIATELY, without thinking. I swung round as she passed and whacked her in the arse considerably hard with a bag full of domestic goods. No thought: Smoke-bag-arse. The cycle was complete. Either she was terrified, remorseful or had a prosthetic arse, because she didnt come after me. If YOU are that lady, then stop blowing smoke in my face or I’ll smack you in the arse again, and this time with the toaster. Then today, in Starbucks I was loitering looking for a seat while Bridge got the cappucinos in. A table became available and a younger woman trotted up to claim it. Now, no big deal, but I was in the queue in front of her. Pre-cancer, I would have let her take the stupid table, but today I just slipped right past her and sat down completely neutral and unphased. An argument ensued whereby she verbalized her less than generous opinions of me, and I did a shruggy “I was here first” thing. The nearby tables supported HER, cause they hadnt seen ME waiting around, but I just held my ground. She eventually backed off before kindly advising me to get “the fork off the table”- Perhaps it was dirty. It was nice of her to be so considerate despite our little difference. Anyway the point being, no-one messes with me now- I’ve faced cancer, so social disapproval is like a holiday.

Take care, but be dangerous! Milton

This entry marks the one-year anniversary of MiltCentral. Stats for the year are over 150,000 visitors,

Today is the one-year anniversary of my diagnosis. It feels like a lifetime of experience in that one short year. Some years just come and go, unnoticed. Not this one. So what have I learnt? Cancer gets just anybody, with little rhyme or reason: smoker or non-smoker, organic vegetable eater or MickyD muncher, drinker, tea-totaller, old, young, spiritualist, hedonist and nonce- all the same. I also realize that there are many things in life (TV, media, peers, ourselves) that conspire to make us forget that this is our ONE LIFE – from cradle to tomb. We are led to believe that we can just quietly plod through our lives, property ladder, career path etc and not make a fuss, don’t rock the boat and just ignore the fact that THIS IS IT. No dress rehearsal, not even a sound check. What you are doing right now is what your life is. And I must shave away with Occam’s Razor any concepts of a reward system at the end of it all.

So here I am, one year on with D’s sword still dangling precariously above me, and it begs incessantly the question: “What are you going to do with your life?” It’s a tough one but I always know the answer: Live MY life with gratitude, creativity, love, irreverence, humour and wonder.

What are YOU gonna do? Best, milton

P.S. If you wanna nice surprise- go to your local magazine dealer and locate a copy of Guitar Techniques (Winter 2005)– Now who’s that new columnist on the CD cover?

Okay, from the site stats, it seems that many people check this page often. I also get messages from newly diagnosed people every day – which is somewhat humbling, and keeps me focused on the important things. So here is another update for anyone interested:

First off, I have been contacted by a doctor who wants to use my videos to train medical students. That is both flattering and amusing to me. Let us hope they are of some benefit to medical science(?) – I imagine they are more useful to patients than doctors but am happy to help of course.

Secondly, I am arranging an amazing evening of music on the evening of January 28th 2006. This will involve an ensemble made up of some of the best Classical and Jazz guitarists in the country (and me). They all said ‘yes’ which is great. Proceeds will go to a cancer charity. London venue to be decided, watch this space(or the space above) for all the details. It will be a fantastic event. If you would like to come, or offer support in any way; then just let me know.

Thirdly, I am off to the states (Dallas, Texas) in December to play some jazz and blues gigs with my old college friend, David Karnes. If you live in the area, why not come see me? These will be my first performances post-Cancer, so I am looking forward to it, but now concerned about missing Xmas and new year with Bridge. hmmm..

I’ll sign off as I am absolutely swamped with things to do. More soon. Thought for the day: It is not what happens to us, but how we react to those events that defines who we really are.

Ta-ra for now, Milton

Went to work last Monday, but turned around as soon as I got there as I was feeling quite weak and I had developed a strange rash on my legs- like giant mosquito bites and very itchy.

Went straight to clinic where they took the mandatory blood sample (have I got ANY left??) and waited to see my consultant. I was suspecting that this was my first sign of GVHD and it had finally caught up with me. But I was in for a shock: Bloody Chicken Pox!!! Of all things, but it seemed obvious in retrospect-and nothing really to complain/worry about. I was advised to take a week off work with a load of antibiotics. Oh well, my students will have to fall temporarliy by the wayside of ignorance on the path of wisdom.

I always wished I could relive my life with ‘adult wisdom’ just like any number of 80’s movies. But alongside (very cuttingly and eloquently) telling nasty bullies, teachers, ex-girlfriends etc. where to insert things, chicken pox did not feature. I better look out for measles, mumps and rubella I suppose. In fact, I will be getting my jab in a few months. If I don’t get a lolly, I’m going to make such a fuss…

So Chicken Pox and jabs. What next? Puberty???????

Cheers, milt (now feeling better, less itchy, non-contagious and back to work)

Just flew back from Edinburgh, where I was visiting my good friend, the jazz pianist Steve Hamilton and the artist Denitza Petrova, Deny.

It was a last minute trip, and we got pretty lucky with the weather: Visiting a defunct 1683 castle in beautiful Scottish grassland and Edinburgh’s excellent art galleries. I was thrilled to see one of Charles Jencks’ landscaped gardens next to the Dean Gallery- I had no idea it was there and it was the first of his works that I’ve seen ‘in the soil’. I also got to see some Picasso, Mondrian, Braques, Miro, Leger & Max Ernst. I’ve been interested in the history of art, so I really enjoyed it. Each painiting is like a message from the artist’s soul whispered through the ages (bit too profound, milt)

Was surprised to hear that Steve has moved slightly away from music for the time being (despite his well-recognized talent) and is focusing on professional poker. The money is much better apparently! Good luck to him, I hope he makes a million, but I (want him (selfishly) to come back to the music making world as soon as he is ready…

Bridget is performing in a production of ‘Les Miserables’ and is busy learning the guitar parts. She is a very talented musician IMHO. She is also writing a series of articles for ‘Guitar Techniques’ Magazine. If you want to keep up to date with her, check out her new site. Now that I am more on my feet, I will also be continuing with my (music-focused/non-cancer) site- which will be more music-nerdy. www.miltonmermikides.com

Pictures are updated so please check them out if you are interested Okay GP appointment tomorrow and then maybe visiting a lovely couple (one awaiting BMT) at Hammersmith Hospital. Leukaemia doesn’t define me, but it will certainly be part of me from here on- and so will MiltCentral. Love, milt x

I fell off my bike today and scraped my knee. No sympathy please, coz I looked like a real twat.

Gonna spend the evening recording some music that I will post up later. Also you may notice that I am putting up more pics (both new and old) often – so check them out.

A big thank you to Paul & Yoko Ono for doing a guitar & piano concert (Sunday 16th October) in aid of the Leukaemia Research Fund. This raised

Hello to all! A surprisingly bright day, my half-term holiday is here already so an opportune time for Bridge and I to walk the local parks and take some pics. (See the Pictures section) Am feeling physically stronger every day and in some ways I am back to ‘normal’- the cycling and music has really helped. There are certain things I cannot do at the moment: Work too hard, be around cigarette smoke and dark enclosed spaces are kind of unpleasant. Other than that, I am a stone (=14 pounds-20 dollars) underweight and still slightly anaemic (11.4 Hgb, aiming for 14) – a few more months of good food should help. (Starting with just one more square of that green & black’s almond chocolate) I am back into my food. Soft-boiled eggs for breakfast, a winter vegetable soup for lunch and a dinner of organic steak and brocolli is a typical day’s diet. This makes a change from a pink protein mix pumped by machine through my nose and directly into my stomach (Which let’s face it, is unlikely to feature on ‘Ready, Steady, Cook!’ anytime soon)

As day 200 approaches, what are my plans? Well am really into practising and writing music, I will try and update more often, get as much exercise as practically possible, spend some quality time with Bridge, my friends and family. I also have various musical ventures that I am spending my time and energy on, and I *may* continue my PhD in Music in December. I also want to put on some charity concerts over Christmas and hopefully offer some support to others facing big medical challenges. Basically I want to ‘live well’.

Man, life is short. How will you spend yours? Chat later- Milt

11.30pm Salutations and best wishes to all. What’s going on? Well I have been a) working at the academy b) riding my bike everywhere c) practising & recording musical ventures d) Reading about History of Art etc.

It’s still not a year from diagnosis- unbelievable. My life is irrevocably changed by this experience. I take seriously now my TRUE experience of life and put the highest stock in it- if this is at the cost of some earnings or CV power then so be it. I have nothing left to fear which is very liberating. My new boundaries that have been forced upon me at work are also a blessing. What is frustrating is that the creative fire inside me is limited by a) time b) energy – but my commitment to them is immovable and I am excited about the future. It is still hard work and there are often mornings when I have to remind myself , yet again, that it is a miracle that I am here at all. Bridge and I are still shaken by the events but we are doing pretty well considering. I include for your listening pleasure, a track we recorded at home last week (In the ‘Music’ Section) which features Bridge singing beautifully.

Enjoy your days, speak soon: Milt.

2am. A warm greeting to all. Apologies to all those who have been awaiting an update, here it is. In short, I have been busy trying to re-integrate into life: I am back working at the Royal Academy of Music (3 days a week). Students and colleagues have been touchingly supportive. It is surreal to be back to work. I am also busy practising and working with 2 new musical projects, which is a welcome source of absorption and comfort. Surprisingly the obligations of work help create the motivation to get on with my own creative projects, more than if I had all the free time in the world. I was getting very low and unmotivated with empty days but am feeling more positive now. I feel the past few months post-BMT have been, in many ways, the toughest part of the journey- hard to believe isnt it? Health-wise, things are pretty good: no GVHD, engraftment appears to be full and my stamina is slowly increasing. My medication is minimal: Penicillin twice daily and Septrum 3 times a week. I was looking back at some of my old entries and only a few months ago my daily medications were unbelievable. How I recovered from it, I don’t really understand- but I am grateful and I am trying to justify my experience by living my life better. What that means exactly I am still working out. Anxiety is also improving, although I am faced with various stresses and challenges at this stage in my life. I am 34 and I feel I have lived a number of lifetimes with this experience- but somehow, life goes on. What I do know for sure is that life is short. Fleeting. I feel we need to grab it when we can because we are on very fragile ground. Although I feel this vulnerability keenly now, it has also lessened a lot of petty stresses in my life. Being presented with one’s own mortality, leaves one with little to fear.

I had lunch with Tim Stollery ( a fellow cancer survivor) – there we were just like normal people. He said that he was finding it hard to cope with the fact that the world hadn’t changed it all despite him personally having a life-changing experience. I would have to concur. I will probably spend the rest of my life assimilating and deriving meaning from this event. I still don’t feel sorry for myself or ‘regret’ this- only in the anguish it has caused Bridget, my family and friends. I just feel indescribably grateful to have a life at all, to love and be loved, play music and to have some more precious time to rediscover the good in the world. Well it’s late and I am lecturing in the morning, so I will sign off. After work, I may go and surprise the docs and nurses at Charing Cross Hospital (Where I spent Nov 2004 – March 2005) and thank them for, you know, saving my life and all that. Still can’t believe that it is not yet a year since DIAGNOSIS (Nov.22) Occasionally the bizarreness of it just hits me and I have to call Bridge and ask “Did that really happen?” Well apparently it did. Anyway I will endeavour to write again sooner and post up some more pics and music. All my best to all of you, love Milton.

P.s. I have memorized the names and the dates of the reigns of all the British monarchs from 1066-2005, the birth and death dates of 50 composers and the melodies and chords of 63 jazz tunes recently. Why? Erm, so I won’t get invited to parties perhaps?

Hello all. Back to work tomorrow…unbelievable. My fatigue is a little worse this days, it seems to fluctuate. But am still feeling well enough to be up and about and start working part-time again. Visited the academy for a meeting on Friday and was overwhelmed by a warm welcome. A surreal experience to be back…the same world through different eyes. Came home to find the flat flooded and Bridget desperately using every towel in the house to prevent damage. Nothing too bad: Am sitting here with two industrial humidifiers whirring away and half the carpet removed. Insurance is a GOOD thing. Latest results show a 96% graft/host ratio in my bone marrow which is “as good as can be hoped for”. So far so good. Still no GVHD, let’s see how it all progresses. In the meantime, follow your bliss- and do one thing that scares you today (nothing dangerous) adios, miltonus

Just returned from an extended stay in Greece. It was great to get away and look at the blue sky, swin in the sea and gaze at shooting stars. My latest results show that my bone marrow is 94% new. That is very good apparently. I am very grateful.

I am very sorry to here terrible news about 2 fellow cancer friends of mine. Julie-Anne Congdon passed away on August 21st 2005 following GVHD problems during her BMT. She was a very inspiring woman and I send my condolences and very best wishes to her family. Eric Roche passed away on September 6th 2005. Eric was an extraordinary musician and spirit and will be sorely missed by so many others. My thoughts go out to his family.

I go back to work on Monday, I can’t believe it but it’s here, another life. I wonder what it will bring this time?

Milton

The results are in. A couple of weeks away from my BMT anniversary and my blood results are pretty much perfect Ok 12.4Hgb is slightly low for a guy but for a female-bloody like me, it’s just fine. Are people treating me different now that I am O-negative? Not really, but I can see something in their eyes that gives away their prejudice.

So am I cured? No & I never will be. This precursor-T-cell Acute Lymphoblastic Leukaemia is a tenacious son of a beeatch and could come back AT ANY TIME. in 2years, in 2 days, in 22 years, or never… I am basically living as if it is my last 2 years so an ideal balance between self-development, hedonism, meaning, focus & fun. I am certainly living with more enjoyment, motivation, courage & gratitude than I did before Leukaemia, so what do I have to complain about?

Nothing! m x

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