Pain

Pain, or Discomfort, as many in the medical profession prefer to term it.
Now, there's a subject I've had plenty of experience of recently.
Although I can't say I'm much better at handling it than I used to be.
Maybe a little.
Practice makes Perfect, after all.

The care at the Marsden is first-class.
The staff are gentle and thoughtful.
And I try very hard NOT to see it as the House of Pain.
But one of the major reasons I don't want to go back in is the routine of Daily Stabbings to take blood. My veins have all shrunk in protest at this treatment, which makes them harder to find and creates a Vicious Circle of increasing pain - sorry, I mean discomfort.
On some days it would take up to four attempts to get the blood they needed out of me, and I haven't met a nurse yet who enjoyed that. Nor of course did I.
Happily, that daily routine is behind me for the time being.
Long may it remain so!


The principal source of pain in my life now is the constant soreness in my mouth, throat and eyes. This is mainly caused, I believe, by GvHD (our old friend Graft versus Host Disease) which is a product of the donor's blood and bone marrow not getting on with the rest of me as well as might have been hoped.

I am on a daily cocktail of.continually adjusted drugs to try and relieve both the GvHD and the pain, but all solutions have so far proved temporary. I am taking ten or twenty little buckets of anti-virals, anti-fungals and anti-biotics every day; maybe even anti-freeze, who knows? Hang on a minute, there IS a pink one.....

But still it sometimes gets too much for my Feeble Disposition.
A couple of nights ago, the soreness in my mouth became much worse and I woke up in excruciating pain in the early hours. I woke poor Julia with my Whimpering and Moaning, to which she responded magnificently (as is her wont), not once, but three times that night. She then rang the hospital the following day to discuss it and we are now managing the pain with a regime of 3-hourly alternate doses of codeine and paracetamol, without which life would be quite literally unbearable. For a couple of days I couldn't bear anything in my mouth at all, not even a sip of cold water or a dry thermometer! It is still too painful to eat or drink, though I have managed a couple of sips of water today, so maybe it is improving. It's also too sore to talk much, so I communicate largely in sign language and whispers at the moment.

Which reminds me (with apologies to those of you who have heard this from me before, which may be most of you because it's one of my favourites):
Why are there no painkillers in the jungle?
Cos the parrots-eat-em-all.

So what have I learnt about Pain through these experiences?
Not a great deal that isn't very obvious if you stop to think about it, to be honest.
But I didn't use to stop and think about it much.
Like most of us, I took my health and wellbeing for granted until they were removed.
But suffering a fair degree of pain myself over the last few months, and especially the last few days, has made me more aware of and sensitive to the suffering of others; particularly children and animals, the Innocents of our World.
This is all rather banal, I'm afraid, but one of my principal sources of pleasure in the past, namely wildlife documentaries, have suddenly become rather affecting and upsetting if there is too much violence in them. Which there usually is!
I expect I'll get over it in time.....

More usefully, as I discovered on the first night of mouth pain, before we had implemented the codeine/paracetamol solution, an alternative source of physical pleasure went a long way towards alleviating the suffering. It meant poor Julia sitting up half the night tenderly stroking and soothing me, but it worked!
However, wonderful as Julia is (and, believe me, she IS), it's a little too much to ask of her to make a habit of it, given that she is holding down a day job as a Company Director, continuously managing both her life and mine, and hasn't had a holiday in months....

I cannot say enough in praise of Julia throughout this Torrid Time.
She of course has been through the mangle herself as it has unfolded, but despite that, has retained her resilience and unwavering support for me. Not to mention her amazing facility for practical management of each situation as it develops.
And I say this as objectively as possible, not just because I love her.
Without her, I simply could not have coped.



Enough for now.
Or maybe too much already...
Please do leave your comments on this blog, however short.
It's always very good to hear from any or all of you and I draw strength from knowing that I am in your thoughts from time to time.

With love and best wishes to all,
Patrick