Sorry about the off-the-shoulder number. |
An
Insincere Apology
Having re-read the first quartet of blogs I
notice that they are rather me-me-me, a little self-centred and even
irreverent? I felt bad about this for a minute or two then thought Sod It,
that’s what a blog is for, isn’t it? Bev Siddle from RAODS actually prompted me
to write it properly rather than only post ambiguous facebook postings and I’m
grateful she did.
So no apologies, this is my personal diary
which I am happy to share and if it doesn’t work for some then that’s tough; I
have come to the conclusion that this blog is every bit as important a part of
my treatment as the 12 tablets I just swallowed (washed down with Diet Coke…),
the numerous i/v chemo drugs, stabs, needles, steroids and fluids. That and the
positive attitude readers have kindly attributed to me. It’s part of the cure
as far as I’m concerned.
The
Treatment Schedule
As seen in Part 4,
there is a schedule to this chemo cycle; unlike some chemos which can be done
as outpatients and then you go home until the next one, the nature of this
régime is intensive and keeps close watching on a day-by-day basis. For what
it’s worth, a rather poorly taken shot of the R-CODOX-M treatment cycle (the
one I am on now) is shown, so you can see just how difficult it would be to
monitor as an outpatient and react quickly if necessary.
The first and third cycles, R-CODOX-M. |
The problem with Burkitt,
or Burkitt’s Lymphoma, is that it is extremely
fast growing and aggressive. That means that it has to be treated with great
urgency before it has the chance to spread and grow into other parts of the
body, following as it does the lymph system which has mini HQs all over the place. The original tumour which alerted to me to the problem and that was surgically
removed just three weeks ago, probably grew in a matter of a few weeks from nothing. It is apparently
the fastest growing cancer known to
man.
That’s quite frightening of course – the
thought of thousands of the little buggers rapidly multiplying many times over
as I write this is more than a slight cause for concern.
But apparently the fast-growing nature of
the cancer also makes it susceptible to treatment, providing that treatment is
delivered intensely, quickly and monitored carefully. Burkitt’s
is ‘highly curable’ – whatever ‘curable’ means in the context of words like
cancer, remission and so on.
But if it
buys me ten years that would be like receiving gold at the Olympics.
So Saturday 18th was Chemo Day 1, and an important one. It
was a long day, starting with Rituxamab, the antibody i/v designed to flag up
the cancer cells and administered slowly
over several hours – done slowly because of any allergic reactions to the
infusion. This reaction I duly got, within an hour – I felt fine one minute
then as though I had been hit by a truck in the tummy the next, especially
around the area of my surgery. I got a really tight chest, found it difficult
to catch my breath and was a bit panicky. But they were expecting it,
administered something to relieve it, stopped and restarted slower and by mid
afternoon we were sort of back on track.
An hour off, then a series of CAV chemo
drugs over the next hour, hand-pushed through syringes the size of garden hose. No problem there. Finished about 7pm…
Next four days – chemo-wise at least – Days 2-5, are by comparison a doddle –
just a ten minute ‘push’ of C only. Not much more to say about that, really.
Monday 20th, Day 3,
a tricky day in anxiety terms. I was told I would be having my first
IntraThechal injection into the spine, a bit like an epidural given to women in
labour. This is to inject chemo straight into the well protected spinal fluid
so it can get to the spine and brain. Having had a fairly uncomfortable bone
marrow biopsy only a week before and with the thoughts of large needles into
the back filled my imagination with horrors and trepidation. That would have
been ok to deal with but they wheeled me down to have the procedure at 2.15pm
for a 2.30pm slot. I didn’t even start until 3.40pm by which time I was a
nervous wreck. The procedure itself wasn’t too bad but my BP and pulse rate
must have been through the roof.
The delay caused a knock-on effect with
visiting; Helena Gomm, fellow thesp, popped in to see me 10 minutes after I had
left my room, which was a bummer – a wasted journey for her and sad for me to
miss her (but she did leave me a good bag – thanks, Helena!). Then back on ward
abut 5pm for ten minutes before visitors Nick and Marion Symes arrived, later
as advised but followed closely by sister Sue and brother in law Bob. As I was
told to lay flat on my back for at least an hour, I had to try to conduct a
horizontal party with four guests, make meaningful conversation and try to eat
my food which arrived early. Tricky.
So for the next one (Wed 22nd
Day 5) I am going to see if we can play better: no waiting around in corridors,
anxiety treatment, no visitors ‘til much later.
Horace
and Sally
Horace, the faithful old retainer of a drip
pump, attached to an equally up-for-retirement trolley, became my faithful
companion during these first few days. Until – horror! I was allowed time off
for good behaviour, went for a ten minute walk and returned to find him
hijacked. Horace was replaced by Sally (so called because she was inspected and
cleaned by someone called Sally, nothing to do my with my Sally…). Sally has a very short battery life and bleeps
incessantly when unplugged from the mains (which is often).
For the first few days they have kept me on
i/v fluids to keep me hydrated and to
keep the flushing out procedure going well. So first Horace, then Sally, have
been very close friends.
My new view - the new hotel for parents with kids in hospital |
Moving
Home
I’d only been in my room barely four days
when I was moved to another side room to make way for an A&E case. Luckily
Tom was visiting at the time so helped me move, not a lengthy job. Nicer room,
the shower drain works (as opposed to the first one which spewed water across
the ensuite floor, under the door and halfway to the bed and which Tom had
brought in a Philips screwdriver so we could fix it) and generally happy here
except the 3G signal is now weaker and keeps dropping out…
Lizzie put my cards up on my new wall with
White Tack (they keep falling off but that’s another story) and I am surrounded
by everything I need – copious crosswords and Sudokus to cock up, books, DVD
player for the laptop, ipod and headphones, important lines of comms with the
outside world.
I have settled into a routine of sorts –
early mornings mean early morning updates to family and friends and facebook.
Read for a while, strip my own bed (well trained), help with my own breakfast
prep, have a Horace-free shower, update the blog, keep notes and go for little
walks to keep stretched.
Sally and Lizzie were in every day until
Monday which was great – sadly both had to go back to work on Monday/Tues but
am seeing Sally again tonight (Wed 22nd) and I speak to all the kids
at least once a day. I am blessed with a supportive family and network of
friends, lucky me.
Weight
watchers
My ‘normal’ fighting is about 85kg (13st 5lb).
In the past week this has fluctuated, mainly because of rapid fluid retention
over the weekend and then being given a carthorse strength diuretic to
counteract it on Sunday night, from a whopping 88.5kg down to today’s 79.5kg.
During a 12 hour period between Sunday and Monday I gained 2kg, lost 4kg/3.5
litres of fluid and filled 13 urine bottles.
It seems to have settled down a bit, thank goodness.
That’s me up to date…at last… Part 6 will
follow in due course if anyone’s still awake.
If course it's 'me me me' - it's an 'ill bloke's blog' - that's YOU! Keep it up. And I am loving the 'off the shoulder' look in the top pic - you NHS fashion trend-setter! XXX
ReplyDeleteAnd I posted this at 5.14 pm not 09.14!
ReplyDeleteAce blog David, truly fascinating and humbling in equal measure. Keep it up old bean, Christine xx
ReplyDeleteThat's weird, I posted that at 22:05!?
ReplyDeleteHi David. Just been sent your blog and discovered your crap news. Go fight the little buggers hard and hang on to your amazing attitude. Your blog is great :-) and so are you! Huge hugs to you and Sally....and the rest of your family. Thinking of you Ailsa xx
ReplyDelete