Wednesday, 22 October 2014

Chapter 5 - The Rollercoaster Ride Starts

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.

BREAKING NEWS: Sally, the drip pump, has gone AWOL. No ransom note received as yet

5 comments:

  1. 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

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  2. And I posted this at 5.14 pm not 09.14!

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  3. Ace blog David, truly fascinating and humbling in equal measure. Keep it up old bean, Christine xx

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  4. That's weird, I posted that at 22:05!?

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  5. Hi 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

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