Chapter 26 - Not quite over yet

It is 8.00pm on Thursday and I am sitting in the D3 dayroom awaiting a bed on a ward a floor below; so it's not over yet.

Charlie Hellard getting his Curtain Call award for best supporting actor

Having been home since last Saturday and the final chemo, I have felt really, really good. I have done normal things again, socialised, popped into rehearsals and witnessed Charlie Hellard receive his 'gong', fixed stuff around the house, been shopping...and was lulled into a false sense of security regarding the state of my immune system, I guess. I should have remembered that at this stage of this final three week cycle - Day 10 - it is the most dangerous time for me to catch something or bleed to death.

Monday saw niece Jo Greatorex come and stay for 24 hours - on a UK mercy mission for a couple of weeks so great to catch up as Brisbane is a hell of a long way away!

Jo, Rosie and Sally enjoying a glass of vino. Not sure Rosie liked it!

Tuesday morning at Winchester Hospital (8am and slithering around on icy roads) I went to have my bloods tested as usual and the call duly came late morning that my platelets were down to 28 so they requested my presence on Thursday for a blood test at Southampton and "bring a bag in case we keep you in".

11.30am Thursday saw Sally and me arrive on time for my test and within half an hour I learnt that my neutrophils are rock bottom, my platelets at an all-time low of 5 (yes, five) and they want me to admit me to D3 at 4pm to give me platelets and keep a close eye on me. All fair enough and despite plans to go and wander round IKEA whilst waiting for my bed, I was persuaded that even this innocuous pastime of browsing could be a tad dangerous in my condition so I stayed in the hospital as asked, had a cuppa at The Macmillan Centre and compared notes with Steven, a fellow Burkitt's sufferer on D3 going through the same regimen, and waited.

Spring is sprung!

Five hours later I had my supper (famished and very relieved that I brought with me a huge bar of fruit & nut chocolate bar) and was still waiting for that elusive bed, having been told late afternoon that I would have a sideroom on D3. And the same old stories: one old lady in the day room waiting for transport home cried and cried for her lift home but after four hours her daughter had to arrange babysitters so she could come and pick her old mum up; another chap admitted at 4pm was sent home again at 7pm, having had a totally wasted day; another couple waited next to me for two hours for their take-home meds. This is what lets the NHS side down, I fear. And with the best will in the world, these delays have an inevitable knock-on effect to clinical treatment.

A brisk walk in a blizzard

So I was not a happy bunny, having wasted the best part of my day too, sitting around in a hospital day room, becoming more neutropenic - loss of feelings in fingers and a couple of blisters in my mouth. As it happens, the blisters were from hot food rather than being ulcers. At least I managed to administer my own evening meds, since no-one was here to do them for me or to take them away (of course, you are trusted to do it at home but not in hospital). As for keeping an eye on me, ha! No-one was taking any notice of me, let alone keep an eye on my health...

So eventually I got my food; my 'lift' - I can't believe they sent a wheelchair to transport me - to C3 AOS, a temporary emergency admission ward, came a bit later and eventually I was admitted to a bed. As my PICC line was blocked, a new cannula was necessary to administer platelets. Not the best of nights and would really rather not be here.

An interesting graph below shows my platelet situation from Nov 10th to February 5th (showing a pretty healthy rebound after Chemo #1 and 2). Note the slow recovery in January and the most recent plummet to rock bottom.

The state of my platelets since mid November - they recovered well after the second treatment but not after the third/fourth

So, after a stay of 24 hours and two transfusions of platelets, the Prof sent me home again but on strict instructions to be very careful not to catch anything or put myself in danger. My temperature is up and down a bit, sometimes well below normal and sometimes rather too high for comfort, so Saturday has been a day of standing by to go back to hospital if necessary, monitoring the temperature and taking it very steady.

I have to go back down to C3 AOS on Sunday morning for blood tests, but hopefully I will be coming home again straight after. Not out of the woods just yet but hanging on in there. Fingers crossed - yet again.