Lettuce pray

Just got back from the regular Monday Marsden clinic visit, combined with visit to Sutton Eye hospital (handily next door) for check-up.

And I'm delighted to say that not only are all my blood counts moving in the right direction, but the Eye Doc professed herself v pleased with progress as well. As indeed am I!  Big Improvement in the last few days on the eye front and it's so good to be able to see clearly again, even though they still get tired and irritable towards the end of the day. But then don't we all?

And most of the time I feel a lot less like a Wilted Lettuce than previously.

Not only is this good news for me, but also for poor Julia, who has continued to support me so ably and selflessly through thick and thin, Cos she is a Little Gem (sorry, couldn't resist it). And I say again: I could not have done it without her. She is truly amazing. Here she is making good use of an alternative salad ingredient.




So both today's appointments confirmed what I've been feeling myself recently, namely that I may have Turned a Corner, although I hesitate to tempt Providence by saying so. We shall see, but the signs are all pointing in that direction.
Lettuce hope so...

Wet Wet Wet

What happened to Summer?
Rain, rain and more rain.
Almost as plentiful as the news reports about it:

... wettest June in over 100 years... inundation... massive clean-up operation... what a mess... widespread flooding... mud everywhere... water pouring in...  up to our knees in minutes... Biblical proportions... Emergency Services... overwhelmed... hosepipe ban... blocked drains... abandoned vehicles... rats on streets... media frenzy... hyperbole abounds... blah blah blah...

Not that it has affected me too much yet.
I don't get out a great deal anyway and happily our cellar remains dry to date...

Having said that, I did manage to get out for my first Proper Outing for aaaaaages yesterday. John Graves had very kindly included Julia and me when he bought tickets for an evening game of T20 cricket at the Oval some time ago and at the time I wasn't at all sure I'd be up to it. But it turned out I was!  Hurrah!  Progress!  Had a very good time, much enjoyed the cricket (particularly because Kent won at a canter) and managed to last the whole evening without wilting, Delicate Flower that I am these days.

AND the weather was very fine too...

ECP etc...

Well, another ten days have gone by and I'm still at home.
Hooray!

So far so good, but I'm still very weak and still suffering from dry eyes, mouth and skin (all symptoms of GvHD), so further treatment is necessary,this time in the form of ECP, Extra-Corporeal Photopheresis. Try saying that with your mouth full, or on second thoughts probably better not.

ECP involves taking blood out of the patient (that's me), separating out the white blood cells, exposing them to UVA light and then putting them back again.

The idea is that it restores the balance of T-cells (vital for immune response) in the blood which has been upset by the transplant and GvHD. It's a long-term treatment that means being connected to a machine for several hours on consecutive days every fortnight for something around 9 months. Happily I don't have too many conflicting commitments at the moment....

I had my first dose of ECP on Thursday afternoon and the second on Friday morning. Thursday's was preceded by the insertion of a Hickman line in my jugular vein in the morning to facilitate cycling the blood through the machine.

Not a particularly pleasant procedure, but at least relatively painless (with anaesthetic of course), especially compared with last week's cauterisation trauma. And Dixie very kindly stepped into the breach (which Julia couldn't cover for once), took me to St Thomas's early and stayed until the ECP had begun in the afternoon. Friday's was much quicker and I was back home again only about two and a half hours after leaving, so that's pretty good. I then slept for 15 hours on Friday night, so clearly it took it out of me a bit.

My general weakness is attributable to the long-term use of steroids apparently, so the dose is being gradually reduced week by week with no ill-effects so far. And I can still drag myself up the stairs, so no need for temporary beds or portable loos again yet. Long may that last!

Meanwhile, I'm still on a cocktail of other drugs to prevent various infections or complications from arising, but they seem to be working in that respect, so I have no complaints there.

As for my eyes post-cauterisation, they still need plenty lubrication in the form of various drops and have a way to go to recover fully and allow constant comfortable use. They tire very quickly, so reading for more than a few minutes is still out of the question unfortunately and I have to keep them closed a lot of the time which doesn't make for a very exciting life.

Julia has been and remains a Tower of Strength, Dependability and Love,

despite the fact that this whole ordeal has bee as much of a Trial for her as it has for me, if not more so. She is constantly juggling her responsibilities both at home and at work in order to support me, and any offers of assistance from Friends and Family are always very welcome with both of us, from a Flying Visit to an hour or two spent just Being Here so that Julia can escape the Yoke for a little while.

On the spiritual front too, all that rope-pulling you've been doing

appears to be paying dividends, so please keep it up!

Tear Duct Cauterisation

A Word of Warning before you read this: if by any chance you're about to have your tear ducts cauterised in the near future, Stop Reading Now!
To counter some of the effects of GvHD, ie dry and smarting eyes, I had my tear ducts cauterised on Tuesday.
It was Horrible!
I had been assured that it would be quick and painless and had therefore, or so I am told (tho I can't remember it), turned down the offer of sedation.
Well, it was quick.
And thank Heaven it was, cos it certainly wasn't painless.

First, some anaesthetic eyedrops and a thorough wash of both eyes.
So far, so good.
Then anaesthetic injections in both eyes (two each) which were exCRUciating.

Then the Cauterisation itself, which was not only exTREmely painful (despite all the anaesthetic), but contained elements of my Worst Nightmares about it, including wisps of smoke and the pungent smell of burning flesh. Yes, really!

I was bellowing throughout like a Wounded Buffalo.

And then I heard myself apologising for being such a wimp.
Well, I take it all back!
It was Seriously Painful and my bellows were fully justified.

It was quite scary too, because it was so painful and one's eyes are very precious, so I was a little frightened of permanent damage.

However, it was at least all over in 5-10 minutes and though both eyes are slightly bruised, they were not painful afterwards and have been fine since.

And best of all, they are already showing signs of improvement even though it's still very early days. I was warned that they would take 2-3 weeks to heal fully, so they should continue to improve from here. I can already read a bit without discomfort, even without my specs, and they are much less dry, so need fewer drops daily.

But I'm very glad I took the surgeon's last minute advice to have all four done at the same time, rather than just two, which I had originally decided on, because I won't have to go through that Appalling Pain again!
 

Temporary Stability

It's already a week since I last blogged.

Hope no one's worrying.

Cos the reason is that there's been nothing much to report.

We have achieved a sort of Equilibrium with the help of the drugs and the Lack of Crises is a very welcome interlude.

However, I can't remain on this drug cocktail for ever, not least because the steroids are gradually making me weaker and weaker. So once again we have to Tinker. And hope that my own immune system will fill the gaps as we reduce the drug intake.

So we've started by reducing the steroids from 35 to 30mg per day.

Still quite a high dose, I'm told, but a step in the right direction.

No noticeable effect so far, but it's early days yet...

Got a chiropodist to come and see me today to tidy up my poor feet which have been suffering from splintered nails and the constriction of Surgical Stockings overnight. She did a grand job and me Plates are a lot more comfortable now.

No, they're not really mine.  Nice though, aren't they?!

Other treatments on the horizon are the Cauterisation of 2 tear ducts (out of 4) on Tuesday next week (19/6) to try and relieve my dry/smarting eyes, and then a long-term course of ECP treatment (Extracorporeal Photopheresis) which is thought to assist recovery from symptoms induced by both GvHD and steroids, although it's quite new so the evidence is thin. Worth a go though. It involves taking blood out of the body, exposing it to UV light and putting it back again.

Here's a clear description of the process and how it's thought to work from the Stanford University School of Medicine website:

The process requires the patient's blood to be temporarily drawn intravenously and then the white-blood cells (WBCs) are separated before the rest of the blood is returned to the patient. The WBCs are then mixed with a liquid medication called psoralen (UVADEX®), which makes the T-lymphocytes more sensitive to ultraviolet (UV) light, more specifically the long wavelength form called UVA. Afterwards, the WBCs are exposed to the UVA which promotes death of the diseased cells. Then the treated WBCs are returned to the patient. The mechanism of photopheresis is still unclear, and there are several theories on possible ways it works. One such theory states that after the treated WBCs are returned to the body, the immune system recognizes the dying abnormal cells and begins to produce healthy lymphocytes to fight against those cells.

It involves a consecutive afternoon and morning of treatment on a machine similar to a dialysis machine, twice a fortnight for 6-9 months or possibly longer, and I'm booked in to St Thomas's for my first session on June 28th. So I'm afraid the rope-pulling will need to continue for a while yet...

To conclude, I will return to the theme of Stability with an offering from my godson Sam, via his mum Cate, which I rather enjoyed:

Q. What's a horse's favourite sport?

A. Stable tennis

Perspective and Awareness

One of the effects of Drugs or Disease, or both, has been a complete loss of perspective on my situation and condition, which is best illustrated by the fact that I said to Julia a couple of days ago: "Gosh, I've been really quite ill, haven't I? And for rather a long time."

I've been so wrapped up in the way I feel day by day that these rather self-evident observations only dawned on me properly after 16-odd months post-transplant, as if I was seeing my illness for what it is for the first time, rather than accepting it as Normality.


This too seems to me, and Julia agrees, to be a positive development because it indicates a return of some Awareness of myself from outside myself which is a healthy part of being a normal Human Bean, as opposed to an Old Crock to whom Things just Happen. I've had quite enough of the latter now and am more than ready to move on. Still plenty of Room for Improvement on the physical front, but things are moving in the right direction, it seems.

Jubilee Weekend

What a fantastic Jubilee weekend!
In true British tradition, the organisation was superb, and spirits failed to be dampened by the worst of the Great British Weather. And in fairness, the weather was by no means all bad, though pretty chilly throughout. Monday evening, for example, was beautiful for the concert.

With the help of the wheelchair and nasal feeding tube, Julia and I managed to get into a Disabled Viewing Area for the Procession of Boats on Sunday afternoon, so we had riverside seats for the whole event right opposite the Houses of Parliament. We took lots of photos and only came away when the rain started in earnest towards the very end.

As a result of standing up for over an hour to see over the Embankment wall, I was Utterly Zorsted by then and fell asleep in the armchair when we got home, but it was worth it! Still knackered on Monday too, so took it very easy and watched the magnificent evening concert in front of Buck House on TV. What a spectacle! A parade of ageing rockers performing their hits from the last 60 years with wonderful lighting and fireworks in perfect time to the music. The whole thing was just breathtaking.

Only a few days or weeks ago I wouldn't have been able to do it, so that signals further improvement as well.

Onwards and Upwards inshallah...