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)
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?