Crisis, what Crisis?

Apologies it's been such a long time since my last post, but I haven't been in good enough shape to turn on the PC.  However, all is now resolving.

The aforementioned back pain that you were all so sympathetic about in your comments moved around all over my body, changing its nature and making it difficult, no impossible, to move around without considerable discomfort in various places.  Then other more obvious symptoms of Graft versus Host Disease (GvHD), eg itchy body rash, made it clear that that was the underlying cause and it needed bringing under control prontissimo.  Cue a course of high dose steroids, and insertion of a cannula so that my drugs could be administered intravenously again instead of orally because I'd been bringing them back up again too frequently, which rather reduces their efficacy, as you can imagine.

The medical team was very efficient and decisive and Julia too has made sure that not only does she continue to come every single day (and for most of the day too regardless of her own tiredness, work crises etc) but also to ensure that she is always here for the important medical consultations, because I have been drifting about in my own little world for the last few days.  Three million cheers for Julia: RaaaaaaaaaaaY!!!

The upshot of all this is that I feel much better now, though very Feak and Weeble, my temp is normal and they're starting to wean me back onto oral drugs rather than IV, with the intention of throwing me back out onto the street by the end of the week.  I have to say I've given up on targets myself.  It's enough that I am where I am, I've been where I've been and let the future take care of itself.  So much easier to live like that.  It'll come when it's ready.

However, other very good news is that all the results of the Bone Marrow Test that I had ten days ago are now back and show that 95-98% of all my blood cells are donor cells (the benchmark they are looking for is 90% plus), so engraftment has definitely been successful, and there is zero sign of any CLL.  Still early days, but everything there looks positive.

Finally had visits from brother Andrew, sister Sally and son Ben, all very supportive and frequently emotional which felt very cathartic, restorative and healing.

Glimmers of Hope

Had a lovely afternoon on Saturday at the Cottage, sitting in deck chairs enjoying the spring sunshine, me wrapped up in several layers and a woolly hat, Julia making less use of her Arctic wardrobe.  No sickness either, unlike the previous week.  By such small, slow advances do I measure my life at the moment.

Another positive sign over the last few days is that my average temperature is gradually reducing.  They measure it six times a day.  There are a few 38+s still, but quite a few low 37s and today a 37 spot on.  I feel a bit better today too.

However, these things are never straightforward and I was kept awake for quite a bit of last night by a Sore Froat and a Sore Back, which I guess is finally protesting at all that time I spend lying down, though I try and vary the position as much as poss.

Still no useful results from any of the tests I've had, but I'm hoping that the temp will come under control before they start the test cycle all over again from the beginning!

Keep pulling, Team, and thank you all for your comments, emails and vibes.  They mean a lot to me.

Break for Freedom

Although I still feel continuously unwell, I am in a much better state than this time last week.

So we may try another Break for Freedom tomorrow, if only for the day.
Gotta keep trying.

St Patrick's Day

Shamrock

It's St P's Day today and I am to be treated to three tests, two on my heart, since infections can lurk undetected in the chambers of the heart.  One of these involves an outing to nearby St Hellier's hospital since they have a super-snazzy machine.  The others will take place here and are a hi-res CT scan also on my heart, and finally a Bone Marrow Biopsy this afternoon (not a very pleasant experience, as they drilll a big needle into the hip bone from behind.  Happily, getting the bone marrow itself is reasonably painless cos it's all anaesthetised, but they also take a sliver of bone which can't be anaesthetised.  Ouch!

Yesterday I felt a lot better in the middle of the day, but sadly it didn't last and I brought up my supper later.  Such setbacks can be very depressing.

Still no closer to identifying whatever infections are inhabiting my body unfortunately.
I have a constant high temp (peaking at 39 yesterday evening), feel permanently feverish and now have a bad case of The Shakes (another possible side-effect of cyclosporin apparently).

Hoping to be able to give you better news next time...

Hickman's gone

Miserable night last night.
Bad diarrhoea and even worse stomach cramps.

They decided to take out my Hickman line this morning, but no change yet.
But when my temperature spiked in the afternoon, I had to have blood taken from my arm instead.

Hoping for a better night, no spiking and no diarrhoea.

Frustration

Still a constant temp and very low on energy and appetite.

Yesterday's outing was not a huge success.
It was nice to be in the Gingerbread Cottage, but unfortunately my lunch refused to stay down and I spent the whole afternoon sleeping or dozing under a duvet on the sofa.

By the time we got back to the hospital at 7pm, I felt very feverish and ready only for bed.

Maybe, just maybe, they'll track down the source of the infection and temperature early next week.

Weekend Pass

Hooray!

Still no sign of the source of the infection, but since my temperature spikes are not severe and my blood counts are good and rising, the docs have decided to run down the number of antibiotics I am currently on in the hope that my own system will continue to deal with whatever the infection is.  If all goes well overnight, and my condition remains stable, I will be allowed to go home late tomorrow morning for both Saturday and Sunday nights.  Hooraaaay!  Then another review at the Monday morning clinic to see how things have gone.

Hickman too has been given a reprieve, his current usefulness being deemed more important than the likelihood that he is the source of the infection.

I cannot exaggerate how keen I am to spend some time at home at last after nearly 4 weeks in a single room. Fingers crossed for all going well tonight.

Is Hickman a Mole?

Still suffering occasional spikes in temperature, and they won't let me go home (quite reasonably) until they've either found the cause or the spikes have settled down of their own accord.  A frustrating time.

Hickman?

Tests continue, and results of previous tests continue to come in, but none has definitely fingered the culprit.  Latest suspicion falls on the Hickman Line, for no other reason that it has been found in other cases to be the source of these Mystery Infections.

So if the spikes continue and no other villain is identified, the Hickman Line will be removed tomorrow afternoon.  I am assured this is a painless operation.  For me, at any rate.  Perhaps less so for Hickman.  But he's done a sterling job so far, and would be due for removal shortly anyway, as my need for IV infusions continues to dwindle.

Meanwhile, I'm still managing to eat and drink enough, and sleep plenty, which must be restorative.

The Well

A much better day today, I'm glad to say.
Not only was I feeling better, but I'm trying harder too, though I hate to admit it.

On the Up

Cyclosporine level is stable for second day running on steady dose.

Promising.

No sickness or headaches.
Even more promising.

Neutrophils up to 2.38, well inside the 'normal' range.
Beyond promising and highly positive.

Feet and ankles badly swollen on account of water retention, but this will resolve as I eat and exercise more, which I am resolutely determined to do.  Easier of course when you don't have headaches and nausea.  Feet not painful anway.  Unless you tread on them.

My Major Aim is now to be out of hospital ASAP.  It will be much easier to eat and exercise more when the menu is a little more appetising and I am not cooped up in a room twelve feet by twelve. In this room there is also a bed, a bedside cabinet, a wardrobe, a desk, an Electric Chair, a fridge, an exercise bike, a drip pump on wheels, a medical trolley, a large pedal bin, a pair of scales, a wheeled table....and me.  When I have visitors it becomes crowded.  In fact, it is already crowded.

Only issue yet to be satisfactorily resolved is why I still get occasional temperatures.  What is the nature of this infection that eludes all the antibiotics we are pumping in and has still not succumbed to the Renewed Resurgence of the Neutrophils?  Will we ever know?  Do we care?!

More tests today: an MRI scan of my head which successfully located the small particle of brain which became accidentally lodged there at birth, but failed to find a reason for my headaches (that's because it was the Cyclosporin overdoses, I suspect); and a Lumbar Puncture - the removal of a small quantity of spinal fluid (not as painful as it sounds, I'm glad to say) - to check for abnormalities; answers tomorrow on that one, though we're not expecting to find anything significant, just covering all bases.  And I think that test completes the checklist for the full 50-year MoT.

With luck the Neutrophils will do their stuff and bring the temperature under control without any further outside intervention or tests.

Finally, I had a Moving Vision this morning (and no, the telly wasn't on).
It brought tears and catharsis and involved all of you.  Scary, huh?



Grand Mosque, Kairouan

 This is the courtyard of the Grand Mosque in Kairouan in Tunisia.
I was there in 1975, and still remember it clearly.
Kairouan is the third Holiest City of the Moslem world, after Mecca and Medina.  Construction of the mosque was begun in 670 AD (the year 50 in the Islamic calendar) and is not only very old, but hugely impressive.
Set at intervals in the enormous courtyard are several wells.  There is a marble one in the foreground of this picture on the left.

Groovy Well

In my vision, I am at the bottom of that well, standing in the bucket, to which are attached many sturdy ropes.
As you can see in the detailed picture of the well (see right), the rim is scarred with the grooves of many centuries of ropes hauled from its depths.  Attached to the upper end of those ropes is You.  One each.  All I can see looking up is a beautiful circle of bright blue sky and the occasional face peering down to shout encouragement or insults, depending on your fancy.  So pick up a rope, pull away and I will soon be back with you again.  No hurry, it's already happening.

Thank you all so much for all the hauling you have done so far.

The HospiTrial

Most of this past few days the poet's words have seemed most apt:
"Across the wires the electric message came:
"He is no better, he is much the same."

And "the same" wasn't much cop, frankly.

Today, though, there are definite Signs of Change.
And quite possibly for the better.

1. I'm feeling a bit more human: this is the most important and welcome change.

2. My neutrophils are up again today, from 0.74 to 1.26.  The 'normal' range for healthy neutrophils is between 1.5 and 7, so we're getting there.  Quite how anything inside me can even be dreaming of ever being normal again is a Miracle, given the battering it has taken over the last three weeks.  Though no one has yet shot me or thrown me into the frozen River Neva after dark (I don't think), I feel I know a little bit about how Rasputin must have felt after Round 1, which was the poison at dinner.  This is the Before picture.  I'll leave the After to your imaginations (though you can Ghougle it if you're feeling really Ghoulish).

3. The docs have, it appears, finally taken on board that my system is more sensitive than most to Cyclosporine (a vital weapon in the battle against Graft versus Host Disease - see post Loading the Dice of 22nd Feb) and are not only measuring it daily again, but adjusting it rather more delicately than previously.  At times I have felt like a character in a Kafka novel (The Hospitrial?), my pleas for more sensitive treatment of this particular drug falling initally on deaf ears, then finding some sympathy in authority (see post Progress? of 28th Feb ), only to have the situation reversed again.  I had seriously considered hiding some of the pills instead of taking them, so sure was I that they were causing a lot of my nausea, headaches and fatigue.  But then without professional help, I didn't know what dose to take myself and didn't want to knock it on the head entirely for fear of suffering something worse.   However, they have appeared to accept that it needs more careful control in my case.  Long may it last.

Low Energy

Thank you all for your continuous stream of vibes, thoughts and good wishes.

Lack of communication from my side is not because I don't appreciate them (not at ALL), but because I have been very low on energy over the last few days (see pic).
Can't eat much, or drink much.
Can't bat, can't bowl, can't field.
Can't blog.
Can't catch mice.

Blood counts are low as a result of everything we've been doing to my Poor Body over the last three weeks.  Umpteen drugs every day, many of them to counteract the side-effects of the others.  Pretty constant temperature over the last week, though nothing frighteningly high.  Saline drips to keep me hydrated.  Headaches, nausea, sensitivity to bright light or loud noise.  Sickness, diarrhoea.  You get the picture.

However, two items of possilbe good news: docs reckon the new Stem Cells have started to engraft because I am showing mild signs of Graft versus Host Disease.  Nothing too severe, but enough to show that things are happening.  Secondly, some of my blood counts have started to turn around and move back up towards normal.  In fact, my platelet count is higher than it has been for years, which I'm particularly pleased about because that was a secondary symptom of CLL in me.  The count we really want to see improving is the Neutrophils, which are a type of white blood cell and the body's first line of defence against bacterial infection.  Once these start to recover properly, they should deal with the minor infections I have been suffering from for the last week which have caused my constant temperature.

Onwards and Upwards!

Gingerbread Cottage

Gingerbread Cottage

Today Julia took possession of the keys for our Gingerbread Cottage in rural Surrey.
Our bolt-hole for the summer.
Also known as Convalescence Cottage and, more officially, Skinner's Cottage, which conjures up images of rabbits taking off their coats in the kitchen and nestling up to each other in a nice comfy casserole, warming their toes in rich, thick gravy.  Yum.

We're just renting it for six months initially and then will review a) how we like living in two places (is it a pain because whenever you want something it's in the other place? or will we love the mixture of town and country?) and b) what else is going on in our lives and whether it's practical to extend the rental or not.

Unlike the Tardis, it looks bigger on the outside than the inside and is a perfect size for the two of us.  Also important is that it's only 30 minutes from the Marsden, making the regular journeys during the next few months of convalescence (at least twice a week to start with, once they let me go) much less enervating than the one hour or so from South Island Place.  It's also been newly refurbished inside, so it's nice and clean for a man with next to no immune system.  Handy.

Hansel...

...and Gretel

Next step is to divide our furniture, cutlery and crockery between the two houses before Hansel and Gretel move in.  We both feel very lucky to have found such a perfect place.  And no sign of a witch so far...

Meanwhile, I'm still tired and feeble, but better than yesterday.  I guess my physical (and therefore mental) state will fluctuate regularly over the next few days.  Nothing to do but take it as it comes and try to make the most of the better times.  Or lie about, moaning and cursing of course.