Latest
update – what a couple of months it's been; deep, confounding lows
but with some great highs. Thanks to all family and friends who've
tipped up and been alongside us in their individual, unique ways.
Special thanks to Kym who has been my strength and inspiration.
Thanks to all those at Headway Luton for taking the trouble to
correspond, make me laugh and keep the sausage sandwiches appearing –
just how I like them!
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| Hats day at the Three Locks |
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| A "selfie" - or more likely taken by Sarah! |
At
this precise time I'm climbing out of the post-chemo black hole.
Every day, for the last week, has been better than it's predecessor.
Of that I'm thankful. It's almost like being ME again. It
provides me with sure hope for the uncertain future.
The
sunshine has helped – well it has mostly but I have to be extremely
careful about exposure to the sun's rays – CLL gives a
frighteningly high vulnerability to melanoma. So the days of nudie
sunbathing on the white sands of Ibiza are reassuringly located in my
past (or my age-crusted memory cells) – sorry folks you've missed
it! They say every cloud has it's silver lining. But seriously – I
need to cover up and wear a hat – no problem there – I've got a
hangerful. Got a real Panama bargain at Primark recently – a nice
Panama for £2. I'm shamed that some poor, exploited soul had to
slave for a week for less than a living wage to make it for me. I'm
exposed and sorry that I can't do much more than be grateful for
their efforts.
I
find words inadequate to explain how the days post chemo impacted on
me – well on both of us in reality.. The nausea, the overwhelming
unpleasant taste in my mouth, tinnitus and dizziness, the
hyper-sensitivity to smells, touch, hearing and temperature are all
experienced for a good few days once the drugs kick in on the second
day (of three). And one of the worst side effects which lasts about a
week or so is delusional thoughts, paranoia and delirium for a couple
of days and total mental confusion for a few more. It's a time to be
quiet, not try and make any decisions, dismantle any electronic
equipment or go on Ebay.
The
other aspect of chemotherapy which has unsettled me is that it messes
with my brain as much as my body. Fatigue – yes I expected that –
was fore-warned indeed. But compromised executive cognitive
functions; the inability to organise myself, to divide attention
(i.e. to multi-task), to reason out choices, to sustain concentration
etc – they have diminished seriously. I'm so glad I'm towards the
end of my career – because I don't think I could maintain
accountable employment in today's conditions. I know that I have been
able to make sense of organising my pension arrangements and with
support have negotiated the benefits business. I have felt
guiding hands on my shoulders.
Chemo-brain is a fact of life. I think I currently get a couple of days a month when I can function to anything like the level I am accustomed to working. Creatively; writing, digital graphics etc I am short of that brain energy that is needed to move things along from the initial idea. Music too becomes a bit of a chore because I find my timing gets compromised or I tire too easily. But – I know I still have the gift of ideas – but lack something of the application to develop and see things through. Take the little video for my musical track “Delirium” well I had the ideas – but couldn't recall software settings, simple tweaks and tricks etc. But I'm confident that, with the gift of recovery, I will be a new person; equipped and fit for the next chapter of life. Talking of fit – I'm so looking forward to being back on Mr Sparkler (my bike) and getting tired jogging – rather than being exhausted walking up and down the stairs.
Chemo-brain is a fact of life. I think I currently get a couple of days a month when I can function to anything like the level I am accustomed to working. Creatively; writing, digital graphics etc I am short of that brain energy that is needed to move things along from the initial idea. Music too becomes a bit of a chore because I find my timing gets compromised or I tire too easily. But – I know I still have the gift of ideas – but lack something of the application to develop and see things through. Take the little video for my musical track “Delirium” well I had the ideas – but couldn't recall software settings, simple tweaks and tricks etc. But I'm confident that, with the gift of recovery, I will be a new person; equipped and fit for the next chapter of life. Talking of fit – I'm so looking forward to being back on Mr Sparkler (my bike) and getting tired jogging – rather than being exhausted walking up and down the stairs.
Another
sensation is the hollow feelings of perpetual hunger and the lust for
nibbles. (mmmmm . . . Wheat Crunchies!) This is a by-product of the steroids which are supposed to
keep some of the side-effects from the chemo at bay. But their own
side effects are pretty vicious; including exacerbating the mental
madness. And I haven't mentioned the dreams (nightmarish) – don't
mention the dreams!! Ha ha ha!
I
allowed myself space to explore some musical thoughts and composed(?)
a short piece in Reason – expressing some of the moods and feelings
of the time. It's linked in the window below. I've made a “little
video” - I can hear you all cringe – but there's no ukulele.
Delirium: the movie!
What
about the grand order of cosmic consequences? As a rational being
(seriously?) I have to find explanations and reasons for everything
happening to me. It leads to constant questioning. Did I cause this
illness? What does it do to my life expectancy? How can I make
contributions to society in the future? How can I survive
financially? Do I matter? What next? What is my place in Universal
space/time continuum? Is the meaning of life 42?
Blimey!
What's he going on about? Oh no he's in the mumbo-jumbo groove!
If you wish to skip some of my more cosmic and Christian thoughts scroll down to the lovely photo of Myself, Kym and Sarah below.
In
my reflective times recently – boy have I had opportunities –
I've found it hard to read deeply into clever stuff. I've operated at
a lower,
semi-conscious level – perhaps primal.
Sometime
I just sit and think about all of the messes that I’ve made over
the years. I think about how many times I’ve made poor
choices. I think about how many times I’ve lost my temper. How
many times I’ve failed to be patient. How many times I’ve
had lustful and selfish thoughts. How many times I've let things
drift along in an aimless fashion. I
have
always had a strong sense of guilt
or
inadequacy: but learned to ignore it or conceal it.
So
I’m so thankful for a God who can take this mess – some
of it
my
own making -
and can breathe recovery, restoration and redemption to it.
Indeed who can make me whole. A different (w)hole to the one I've
fallen into. Some
of the reading or
video-watching
I've done has helped me to crystallise
my own thoughts and beliefs: I'm eclectic rather than orthodox! Or
perhaps a copycat! I have lifted some others' words where they have represented my thoughts but presented them in a clearer fashion. So a few points I lay before you now.
Over recent years I've discovered that trying to please “God” can be a tiresome system of “do's and don’ts, shoulds and shouldn'ts”; many man-made which, in themselves, are incapable to change human lives but tragically capable of exhausting and devastating those of us who's religions dictate such doctrines. I have wanted to please God with my life but at the same time, in all honesty, sometimes I get tired trying to live the Christian life. Sometimes it just feels like it’s way too much pressure - on my own. At times I thought, “It was much easier before I became Christian.” As I was getting to know God, I felt the burden of a tremendous sense of responsibility to please him with my life. I would read the Bible, read a command, and it seemed that verse after verse I could honestly say, “Yep, good idea. I need to do that more – but can I?.” A struggle?
Over recent years I've discovered that trying to please “God” can be a tiresome system of “do's and don’ts, shoulds and shouldn'ts”; many man-made which, in themselves, are incapable to change human lives but tragically capable of exhausting and devastating those of us who's religions dictate such doctrines. I have wanted to please God with my life but at the same time, in all honesty, sometimes I get tired trying to live the Christian life. Sometimes it just feels like it’s way too much pressure - on my own. At times I thought, “It was much easier before I became Christian.” As I was getting to know God, I felt the burden of a tremendous sense of responsibility to please him with my life. I would read the Bible, read a command, and it seemed that verse after verse I could honestly say, “Yep, good idea. I need to do that more – but can I?.” A struggle?
However,
fortunately God taught me something in Scripture that freed
me from this highly responsible, performance-driven mind-set. I
could now see God again and deeply enjoy my relationship with him. There
is a huge principle in Scripture that is throughout the New
Testament:-
It's
this: God meets us and loves us as we are. God does not demand perfection in us - on our own. God is not expecting us to
measure up - on our own. God never thought that we could live the Christian life - on our own,
nor does he expect that we could actually meet his holy standards - on our own.
If he thought that we could, he wouldn’t have come to earth to die
for us. But he did. “God so
loved the world that he gave his son. . . .” - John's Gospel
Chapter 3, verses 16 and 17. Those few verses are pretty much the
message of the whole Bible: all the rest of scripture is a pretty
much a commentary to that short passage. Jesus said to love one
another as he loved us. Elsewhere in the New Testament we read that
God is love. Love must be the key. God loves us first in order that we can be loved and give love.
There's
a song “Where is
the Love?”
(Either Black Eyed Peas or Roberta Flack and Donny Hathaway – two
different songs) And that is what seems to be missing from a lot of
this religious how-do-you-do! I believe that it is primal Love - in
the acts of creation and compassionate Love - in the acts of
redemption that show us a better way forward. Therefore we need to
bring such love into our own lives as we treat this Creation - our
home – and all our interactions and relationships – our neighbour
or family - with real generosity of spirit. I do believe that we will
all, one day, have to account for how we have been good stewards of
the gifts we have been
given – including
this incredible planet Earth. If
we fill all our thoughts with love we will learn to act with love
too.
I
bet you think I've gone a bit potty or the steroids have got the
better of me.
But I thought I'd share those thoughts with you. It's possibly marginally better than whinnying on about how these damned drugs are causing my hair to fall out or my toenails turn mouldy! Fact: neither of those is true.
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| More Three Locks fun: this time with my lovely daughter Sarah |
I
know I've been blessed. I look at others in the hospital and I think
– phew you look ill. I don't look poorly – I know, however, I
think poorly. But I
worked pretty hard at my physical and mental well-being last year.
Was that a coincidence or was I guided to get fit for the trials that
I was to face this year. I had a similar feeling about my life in
1980/1981. I took up jogging to help me get fit. It was at the time
of James and Anna coming into the world and I wanted to live to see
them grow up. I felt at that time that my life's horizons were being
pushed back. I jogged through the beautiful Ross on Wye countryside –
out along the old abandoned railway line and back along the banks of
the river. I was in harmony with my surroundings and I mentally
shouted and screamed at those people and circumstances that were
giving me pain. I also sang about the beauty of my children and the
loveliness of the surroundings and the opportunities that I was been
given. I didn't really know God then; but felt the warmth of loving
care. During that time
I needed mental and physical fitness for the work and family
challenges of the day.
Back to the "treatment" - I'm left one full session of the Chemo-Imuno therapy as it's actually called plus one session of the Immuno part. That will be about two months duration. We can't say the end time because we don't know the start time. I've had a poor record of keeping to the four-week cycles due to my low blood levels. This is what you get for being diagnosed at the wrong end of the disease. But all the signs are encouraging: CT scan looked pretty fair and blood levels are not fluctuating so wildly. I guess it's fair to say that this has taken a good twelve months or so out of my calendar. Not out of my life because I feel that inwardly I have been given and gained much.
Just
to pad this out a bit more (well there's nothing like frank honesty!)
I thought I'd share a few
links which give some more up to date information about CLL (Chronic
Lymphocytic Leukaemia. )
Youtube
is our friend here.
Basics of CLL
recent conference
lecture on prognosis
first line treatment
the changing face of treatment
are we closer to a cure?
Also
my son, James, provided me with an interesting link to an article
written by a cancer survivor who belongs to a Yoga discipline.
If
you're interested in delving with a bit more depth into some of my personal faith matters:
Well
that's probably enough rambling for one day – it's rather
exhausting. What no “old man's music” links? No I'd sort of
forgotten. My friend Diarmuid gave me the recently repackaged
Brinsley Schwarz boxed set. I will be listening to that. Oh I just
can't help myself!
Firstly
a link to the Brinsley the man - Brinsley Schwatz: the man
And
now a link to the band of the same name:-
Goodness
me – if you read through this lot – you've read two thousand
words. Next time I promise that I'll hire an editor!! Next time a run
down on daytime TV – hahaha you must think I'm joking.
Goodnight and don't forget to comment - cheques or cash gratefully accepted - we're on benefits street at the moment!!
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