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
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
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.
So it’s off to Hammersmith Hospital for the Bone Marrow
Transplant. As far as I understand it, it works something
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
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,
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!
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
Renegade Big Band, 7th February at RAM, who raised a
It’s a beautiful Sunday morning and I’ve slept like a trooper. (A particularly sleepy trooper on valium).
It’s Valentine’s Day Eve.
I would like to encourage all visitors to send loads of valentine messages to your friends & lovers this year. You KNOW it feels good receiving them, be honest now…
Fizzy Fingers & Tingling Toes
The effects of the vincristine chemotherapy have still not abated. My fingers are just as numb and tingly as 4 weeks ago. It is most evident doing fiddly jobs: opening packets, turning pages and PLAYING GUITAR. Oh well, vincristine saved my life in Phase I so can’t really complain – I will keep you updated on the latest developments: FingerWatch…
Okay very dangerous territory here. Lethal. But I would like to talk a little about religion. Now, I know people can become fiercely upset about this subject; even taking up arms to defend a point of view, so I will apologize in advance for any offence my personal opinion might have on the reader’s sensibilities.
I would have to say that I lie somewhere between the atheist and agnostic camps. I see such beauty in the world and at times I imagine that there is some order to the universe, but in general I do not sense the presence of an omniscient, benign entity keeping tally on our little lives and readying the scales for the after-life: Accept HIM and avoid the eternal barbeque etc.
This does not mean I don’t believe in the value of faith, compassion, morality and spirituality. However, I have never seen such things as dependent upon a belief in a G-dude – but hey that’s me. In fact, perhaps these are INDEPENDENT values from religion – we all know what damage can be done in the name of most religions.
I also fully admit that I know NOTHING and believe very little. Which means that I am completely open to suggestions and am not hanging onto any belief (or non-belief). So I am ready to listen to any ideas people have: the world was created in seven days, an after-life, water/wine tricks, karma, dinosaur-fossils as “faith-testers”, elephants with special powers, the A-team and so on. Really I am.
What I have difficulty in accepting is that any human, or group of humans on earth have THE ANSWER. How can they know for sure? Faith? Well there exist people with equally strong faith with completely different beliefs – so who’s right? I humbly suggest no-one.
I always wondered when it got down to it and my life was on the line, would I pray to a newly-found God. Well, I know the answer to that.
I didn’t and I don’t. (gasp)
The only belief I felt was that in my lust for life, joy of music and love for my family and friends.
I have the utmost respect for everyone’s opinion (clearly the greatest art has been created with the love of God in the heart). However, I do not relate to:
- The need to impose one’s belief on others, door-to-door or otherwise
- The belief that one book holds the truth and if you haven’t read it or don’t believe it, tough tutus, it’s eternal toasted crumpets for you.
- The ‘fear’ of holding a differing opinion. Following a religion ‘just in case’ it is true. I call that ‘After-Life Insurance’ and surely an ominscient geezer would see right through that trick fairly sharpish.
- I wouldn’t want to believe in a God that ‘saves’ people who accept some doctrine without questioning it and ‘damns’ those with independence of thought or the courage to think differently.
What I do know is that I believe in, and love: life, music, people, nature and creativity.
I am not sure if I am a ‘good’ person, I just do what feels right to me and I do my best to appreciate the life that I have been given. Clearly, I make many, many mistakes and have done regrettable things in my life. If my thoughts means no harp & wings and a mighty long time in the furnace, then so be it. At least it will make a change from the bloody English weather.
Love, peace and good will to you all – my friends, everywhere.