Does anyone remember the sketch where Mr Bean changes into his swimming trunks without taking off his trousers? Hilarious but I've spent the last two days figuring out how he did it. And more to the point, how I can change my shirt whilst connected to Horace. I had assumed – wrongly as it turns out – that they would give me a 20 minute break from him on Tuesday morning prior to starting my Methotrexate (aka The Yellow Peril). This time to savour if not a shower then a splash of water and some fresh deodorant and a clean shirt.
Nope, not allowed - gotta get straight to it and furthermore I shall be connected for the next 24 hours to the Yellow Peril and another 24-48 hours continuously after that to the fluids; this I must remember for next time as it's not very pleasant for anyone.
The effects of the Methotrexate were not obvious, to be honest; I suffered no seizures, allergies or side effects other than – and this is only in hindsight – a gradual wearing down of my ability to function. After a day or so of being connected I realised that I hadn't moved from this room except to go the bathroom, and then always, always with Horace.
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| Me, Horace and The Yellow Peril |
Fatigue
One definition: Fatigue is a feeling of weariness, tiredness, or lack of energy
They're right; it's not just tiredness, that can be overcome by a power nap or a good night's sleep (though that would help). It creeps up on you and the apathetic feeling that goes with it is almost upsetting; I understand what ME sufferers mean now when they talk about not being to climb the stairs or get out of bed.
For someone who is active nearly all the time and very rarely 'ill', it is like having a limb removed; the novelty of having a bit of 'me' time soon wears thin.
I am reading a good book but barely taking it in. Eating tasty food that I can't taste unless I put dollops of ketchup on. I try watching a DVD and get interrupted so many times it is difficult to pick up the thread again, even if I can be bothered to connect it all up in the first place.
Alarm Bells
I have 'obs' every few hours - blood pressure, heart, oxygen sats and temperature; all have been pretty normal until Wednesday evening when my temperature, normally 36.9, shot up to 38.1. Suddenly a flurry of activity – antibiotics, paracetamol, talk of X-Rays and even more frequent obs, like every 15 minutes. It's precautionary rather than reactive, I know. Things have stabilised over the 24 hours since then, settling down at 37.1 - 37.5, well within normal tolerances. No wonder they couldn't do this without me being an in-patient!
Thursday 30th October sees a pre-Halloween bloodfest, in the form of whole blood hoisted up on Horace's shoulders and I start thinking about the 53 or 54 pints of blood I have given over the years, starting when I was student of 19 and got dragged along by my old college mate Ian Whettingsteel (the only chap I've ever been a Best Man for). In particular I wondered whose blood it was, and whether I might start speaking in a foreign tongue or suddenly be able to play the piano; in fact I got to wondering what the odds were of me actually getting my own blood back but I think that is highly unlikely, don't you?
Whatever, the effects, far from being unpleasant, were uplifting. More oxygen to the brain, more feeling of well-being and less fatigue. A bit like a double espresso, really.
One line out
My PICC line is now removed; the lady who fitted it was not best pleased that it had not been treated with more care and had pulled out by about 12cm - enough to leave it short of the chest cavity it should be in, and the probable cause of the blood clot which is now being treated by anti-coagulants. A new one is to be fitted in the other arm on Monday... and no-one has been left in doubt about how it should be treated. It will be good to get rid of the cannulas again - they are painful, temperamental and they restrict movement, washing, typing, writing etc.
An interesting few days and an odd feeling that it's my birthday tomorrow but I shouldn't really be here for it. Might I be allowed home for a couple of days this time next week when I have some sort of immune system back, do you think? Fingers crossed...watch this space.
Finally, an update on the fundraising. It's slowed down now, as I have exhausted my patient, long suffering facebook, twitter and other friends. We are well past the halfway point at £2,630 plus Gift Aid. I can't thank you enough and Lymphoma Association said this:
"On behalf of the Lymphoma Association, I would like to send you our very best wishes and to say thank you so much for thinking of the association.
The amount you have raised on your Virgin Money page is staggering and our thanks go to all your friends and family for the support they have given to the association."
If you can help spread the word, we can get the other half sorted over the next few weeks. It would be really good to get to the personal target of £5k.
This is the link to the page http://uk.virginmoneygiving.com/team/anillblokesteam
Thank you.
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