The good news is that I've had my first negative PCR result. This
means that the really accurate test can no longer detect any leukaemia
in my body! Great news, that will be even greater when I get off
This has occurred despite the fact that I've been taking a lot of
immuno-suppressant drugs in order to control the GVHD that has affected
my lungs. This is good from the perspective that the anti-leukaemia
effect has been very strong, hence no more leukaemia. This is more
of a concern from a GVHD point, as there's a pretty aggressive GVHD
affecting my lungs.
GVHD and the Lungs
I haven't updated the site over the last few months mainly due to
a lack of progress regarding improvements with the lungs. In fact,
I've been doing as much physical exercise as I possibly could to
really work the lungs and regain more function. At times I've felt
a slight improvement and at others; when I've had a cold, I've felt
a slight deterioration. In addition to all the exercise I've been
doing yoga, which really helped the flexibility a lot, along with
the breathing exercises, but the lung function has, until now either
stayed the same or worsened slightly.
In fact at my last appointment with the lung consultant on Monday,
I had a scan back through all my lung function results, and it's
pretty clear that there's been a gradual worsening of the function
over the last six months.
I've been gradually trying to decrease my steroid intake which is
currently at 20mg per day, but I've found that this was previously
the threshold after which the symptoms would worsen. Therefore I
got into a catch-22 situation where I can't reduce the steroid levels
which are; according to the consultant, dangerously high. Add to
that the 'optimism' of the consultant who reckons that it's better
to get off the steroids and have permanently damaged lungs, rather
than to stay on the drugs and await the potentially lethal consequences.
Doesn't modern medicine and some doctors have a really enthusiastic
approach of encouraging healing within their patients? I should
be happy, in the knowledge that I haven't already contracted diabetes
and died from a lethal infection was his comment!
That's probably another reason why I've lost faith in medicine,
and I now realise that I'm going to heal myself using alternative
methods. I'm sick and tired of getting pumped full of these drugs,
which are probably just as bad if not worse that heavy recreational
drugs. They play havoc with the mind and body, and then reason that
I haven't sorted out the GVHD is probably due to my body fighting
the steroids themselves! Crazy theory maybe, but not when one considers
the harmful effects of the steroids. I'd rather trust my own immune-system
thanks! OK it's needs a bit of educating, as the lymphocytes (t-cells)
are aggravating the lungs, and need to be somehow reprogrammed to
leave them alone.
In the meantime, the dose of the other immuno-suppressant that I'm
taking - MMF - has been increased from 2g/day to 3g/day. The MMF
is a 'steroid sparing' drug. In other words that more MMF one takes,
the less steroids one can take, so one can get down to a 'safer'
level of steroids.
I may be coming across as quite sceptical of medicine, but after
over seven months off work, I've been doing a lot of thinking (which
isn't always a good thing when you're on steroids) and reckon that
maybe there's a more mental/spiritual aspect to the GVHD. I've known
of someone who was faced with the prospect of taking steroids to
control her GVHD. She took up a form of Qi-Gong - a Chinese healing
art - and avoided taking the drug. The interesting aspect of Qi-Gong
is that it's a mind-body healing art. In order to sort out the body
one has to clear the mind, and then harness the energies around
us and use them on ourselves. I've been looking at going to China
to learn the art in a retreat of some sort, but the Chinese government
cracked down on these places a couple of years ago after problems
with a funny sect. (Qi-Gong has been practiced in China for may
thousands of years) It's been difficult to find a place and friends
have been helping me to track somewhere down, but I've also realised
that even if we find a place, then the language is going to be another
I happened to come across a Tai-chi Chi-Gong master in the UK in
Devon who teaches the type of Qi-Gong that I'm interested in learning,
and so I visited him last weekend to have some one-on-one training.
It was a good weekend and I've come back having learned some key
exercises to help me that I've started to practice. It's early days
but we'll see how much this helps. I'm doing it a) to get off the
steroids and MMF, and b) to recover my lung function.
One of the most difficult aspects of the GVHD has been watching
myself wither away over time. In addition I've had a lot of time
on my hands, and sometimes you can go a bit crazy by spending too
much time thinking about things. Although I've been focusing on
my health, it's hard not to think about life passing you by as you're
off work and waiting to get better. It's also hard on relationships
too, as your loved ones see you get thinner and weaker and sometimes
find it difficult to cope.
I've tried to keep as much normality in my life, but maybe therein
lies the problem, as this isn't normal. I've been spending too much
of my energies focusing on the everyday things in life, and not
enough energies focused inwardly on myself. I've found dealing with
this phase of the treatment more difficult than dealing with the
transplant itself. Perhaps it's because with the transplant it was
more black and white, and now there's a lot more grey. Now I'm embracing
the alternative approach, and making further changes to my diet
to see myself through to the end of this.
I would like to say thank you again to all my family and friends
for your generous support, and thanks for your messages!
PS: I've just realised that it's 5 years to the day that I was diagnosed....