Saturday 28 April 2012

April Showers



I love April showers!
Maybe it's because I was born in April.
From late winter to early summer in the Twinkling of an Eye.
And back again.
A bit like me at the moment.

I've had a tough few days and nights this week.
My mouth and throat are still very sore, too sore to eat, and my eyes need constant lubrication from one or other of the 4 different eyedrops at my disposal, but at least the Itching has subsided somewhat and I can swallow a bit now.
Oh, the bliss of a Sip of Iced Water!


I'm still on a Daily Cocktail of Antifungals, Antivirals and Antibiotics, but some of these must be having a positive effect, and I avoid the ones which come with Pain attached.

Two new additions to the Armoury today: a PICC line and a Pain Patch.

I've had a PICC line before (Peripherally Inserted Central Catheter): it's just a plastic tube inserted into a vein in the upper arm (painlessly, I'm glad to say) through which the nurses can administer drugs and take blood at will, without recourse to the Multiple Stabbings to which I've been subjected recently and which have left me with a Handsome Collection of Bruises all over arms and stomach.

The Pain Patch is a Thing of Wonder: a tiny sticky patch which sits unobtrusively on my shoulder, gently releasing Pain Relief for 72 hours. A most Modest and Remarkable creation. Assuming it works!  We shall see...

Finally, yesterday, I spent a very tranquil afternoon in the company of my very Dear and highly Devoted, though sadly currently overworked, Wife, playing Upwords (3-D Scrabble - she won!), having cream applied lovingly and expertly to my poor old dehydrated, drugged-up bod and just Filling up the Furniture (her expression). A very soothing and relaxing experience which has left me feeling Caaalm!




Long may it last......

Thursday 19 April 2012

Spring

Spring is sprung!
De grass is riz.
De Boid is on de Wing.
But dat's absoid.
I always t'ought de Wing was on de Boid.

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Spring! April showers take us from Winter to Summer in less time than it takes to say so.
New lambs are gambolling round their mothers in the green.
The swallows are returning.
Though not many of either, admittedly, in Central London.
So I'm guessing.
 
Spring!
Renewal.
Fresh Growth.
Resurrection, even.
 
Now surely is the time for the Winter of my Discontent to pass.
 
Thank you all so much for your messages on the blog and by email.
Not sure if/when I'll get around to answering each and every one, but rest assured they are all v much appreciated and mean a lot to me.

Wednesday 18 April 2012

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.

View DSCF0297.JPG in slide show

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

Saturday 14 April 2012

On His Own

Well,  here we go again.
It's just over a year since my last post on this blog (2.4.11), during which time I've had more Ins and Outs to and from hospital than the Boat Race.  Well, nearly.....
Oops! Clash of blades....







Here's Julia's record of them all since the Transplant (I haven't been sufficiently compos mentis a lot of the time to keep a record myself):

15 Feb -  1 Apr (6 weeks)
  8 Apr - 27 Apr (3 weeks)
27 May - 14 Jun (3 weeks)
18 Aug - 13 Oct (8 weeks)
27 Oct -  29 Oct (St. Thomas's)
29 Oct - 18 Nov (3 weeks)
22 Nov - 28 Nov (1 week)
13 Dec - 30 Dec (overnight at SIP from 25 to 30 Dec; daily return for antibiotic (2 weeks)
Total weeks in hospital in 2011 = 26 weeks
12 Mar - 26 Mar (2 weeks)
  2 Apr - 13 Apr (2 weeks)

I'm still tired and sore in all sorts of uncomfortable places, but feeling better overall than I have for a while, so maybe that's a good sign.  We shall see....

So counting the weeks in December when I was a daily outpatient, this is my 10th Bid for Freedom since the transplant. Let's hope it's the most successful and The Last!

To mark the occasion, my lovely cousin Eli and dear friend Sue are looking after me this weekend, giving the Brave but Super-Stressed Julia a well deserved break to visit her parents.

And the title of this post?
Is the name of a runner in this afternoon's Grand National.
Seems particularly appropriate to me.
So put all your savings on at 16-1!
Best of luck.