Keep Pulling

I'm sorry I've been keeping you on tenterhooks between blogs, but the hospital PC has been becoming less and less reliable and finally seemed to give up the effort altogether this afternoon.

However, it doesn't matter any more because I'm OUT!
After seven and a half weeks since admission, they've finally let me go.
I can't tell you how good it is to be home at last and I just hope it's not too temporary a reprieve from hospital food (difficult to tell whether my lunch today had already been eaten by someone else or not).

A few last minute hurdles yesterday and today, revolving around a CT scan I had yesterday to make sure my lymph glands were not swollen as a result of the latest virus they've detected in the blood.  But no, that was fine.  However, then there was a very frustrating last-minute hold-up because my potassium levels were very low and I had to have a six hour infusion all afternoon before they'd let me go.

But it's finally happened and I'm at home again.
And spring is in full swing.
In fact the pear tree sprang into blossom only today to welcome me home.
Surely a good omen.
And certainly a delight.

I have an enormous bag of drugs to make sure all my various viruses are balanced against each other and none gets control of the situation, and I will be going in to the Day Clinic on Monday and Wednesday next week.  But meanwhile, I have the weekend to enjoy at home.

Although I'm out this evening, I have to admit to being somewhat nervous about being dragged straight back in again for a crisis, but that's partly because I can't quite believe the first phase may be over and I'm so very keen not to have to go back.

Keep pulling

So please don't stop pulling on those ropes because I feel my head has only just appeared over the parapet of the well and I might well topple back in.

Now if you'll excuse me, I'll go and tackle the stairs again (amazing how feeble my body is after seven weeks lying about) and start on that monster bag of drugs.

Thank you all for all your wonderful support so far, verbal, mental, spiritual and all.

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!

Progress?

No signs of the awaited GvHD yet, but equally important, have found that one of the Registrars and the Ward Sister are in sympathy and agreement with my diagnosis of headaches and sickness being largely, if not entirely, due to overdosing on Cyclosporine.  V important drug in controlling GvHD (which can be v nasty if left to its own devices) so no question of dumping it, but will be monitoring the blood levels much more closely in the immediate future and adjusting the dosage accordingly.

Feeling better already at the prospect!
And of course thanks to your lasers, which are no doubt pinging around my room like Pingy Things even as I write.
No headache and much reduced nausea today.
Hooray!

Hope to be up to a longer post soon, but meanwhile here's another of my favourite jokes to keep you amused till I return with more Boring Stuff:

A man went to a Fancy Dress Party, carrying his girlfriend on his back.
"What have you come as?", asked another Partygoer.
"I'm a Snail," he replied.
"Then who's she?" asked the Partygoer, pointing at the girl on his back.
"Oh, that's Michelle".

Zorsted

Tired, headache, sick.
In fact, totally zorsted.
Again.

But temp normal, so no Spikes today, other than those coming my way via your Comments.
For which, many thanks.

I'll have more to say when I've got more energy to say it!

Meanwhile, a joke provided by Shin:

A man wanting to make sure his family stayed on top of the latest technology bought himself an iPhone, his daughter an iPad and his son an iPod.  Not wanting to leave his wife out, he bought her an iRon.  That's when the trouble started.

Spike 2

Spiked again yesterday evening.  Temp 38.6 this time, but soon brought under control with more antibiotics and temp normal this morning.  Breakfast doesn't look too appetising though.

Hopefully this is the Hill of Difficulty, and Mount Clear is not far away now.

Meanwhile, here is one of Julia's favourites from a different Spike:

"Oh, give me a Home where the Buffalo roam,
And I'll show you a house with a very messy carpet."

Spiking

Spiking

Temperature started to rise today, a sign that I have an infection.
No other symptoms happily, but this is what they call Spiking, when an internal infection takes advantage of the lack of a police force to run riot and the temperature spikes.  I've got my own little North African scenario going on inside me here.  Perhaps we can see the new Stem Cells as the New Democrats, and the infection as the Desperate Dictators clinging to power.

Anyway, the staff here have been waiting patiently (geddit?) for this moment, so within an hour of my temperature reaching 38.2 (not exactly outrageously high, but they like to catch any infection early, given the lack of internal controls), I had been examined by a (rather gorgeous) young blonde doctor (it was hell, but at least she found no symptoms - and I managed not to dribble in front of her), had a chest x-ray, donated blood and other less savoury samples, and been injected with enough antibiotics to clear Tripoli in a single sweep.


An Opportunistic
Infection



Hence by 7 pm, when you were generously sending Loving Vibes in this direction, I was plugged in to the drips and complementing your treatment with a dose of the Marsden's finest.

Good timing or what?!

We'll see tomorrow morning whether the Dictator is going to hang on "to the last drop of blood" or whether he'll scarper to Saudi Arabia after all.  Or will the New Democrats string him up?  Such suspense.....

Loading the Dice



Finicky Feeder

MUCH better today after a couple of days feeling tired, listless and ultimately sick.
Didn't hardly eat nuffink yesterday.
Most definitely a Finicky Feeder (old family joke).
Hence lack of Boggling for a few days.
Apologies for causing worry.  I know it's just as difficult, if not more so, for you watching from afar as it is for me going through it.
Two things to remember, O Worriers:
1. No blog doesn't necessarily mean I'm dead (they're not gonna kill me off that easy).
2. Whatever happens, all is well with the world.

More of the latter anon, when I can get a word in edgeways on matters other than medical.

Docs diagnosed too high a level of Cyclosporine in the blood (one of the chemo-poisons we've been pumping into my system), so I've had a rest from it for 24 hours to let the level decrease.

As Docs have explained, since everyone's different (we're all the same, but different, innit?) it's as much of an Art as a Science managing this whole process.  We're trying to encourage Graft versus Host Disease (GvHD), but not too much of it.  A small dose of GvHD (most likely between days 10 and 14 after the Transplant, ie next weekend in my case) means that the new Stem Cells have recognised the old immune system as the enemy.  Which means they also recognise the old leukaemic cells as the enemy and deal with them appropriately: Graft versus Leukaemia effect (GvL) which is highly desirable.  However, a strong dose of GvHD is dangerous, so we don't want too much of it thank you.

Cyclosporine and Mycophenolate (the drugs being dripped into me) are both immuno-suppressants, hampering the effectiveness of the old immune system.  But if we hamper it too much, either we won't get GvHD because there's no old system for the new system to recognise and attack, or we'll get a very sick patient who might not survive the treatment.  Or both.  But if we don't hamper it enough, we won't get Engraftment and the old system will win the war.  Don't want that either thanks, cos then the whole process has been a waste of time and effort.  Not to mention NHS resources.

Overloaded Dice?

So we're trying to Load the Dice in favour of the Good Guys without doing it so obviously that the Management hauls us off the gambling table and kicks us out of the casino altogether.
Apologies to Julian, O Mighty Casino-Owner, for casting you in the role of Bad Guy.
Only for the purposes of this illustration, you understand.
In Real Life we all know that the Casino Owners are the ultimate Good Guys.
Hmmm....

Tired and Emotional

You're all much too generous with your praise and far too free with your use of the term 'amazing'.

Just trying to keep my spirits up, aren't you?

I know your game.

Well, it won't work.

I'm going to be miserable.

So there.

Felt really quite tired yesterday, whether from the Poison we continue to drip into my poor system, or from the Emotion of the Transplant, I'm not sure.
Maybe both.

The poisons are Cyclosporine and Mycophenolate.  As the Transplant Consultant told me on his ward round yesterday, the Cyclosporine removes the ability of T-cells (the Killer white blood cells from my old system) to communicate with each other, thus putting them in Solitary Confinement "like you", he said.
I prefer to think of it as taking away their radios.
Either way, it means they can't mount a co-ordinated attack against the new Stem Cells.
Hooray!

The Transplant itself turned out to be quite an emotional hour.
It was not unlike being at a Birth.
The birth of my new Bone Marrow, I guess.
Spoons in one hand and Julia's hand (attached to Julia) in the other, it was lovely to get so many messages in response to my text saying that the Stem Cells were going in right then and there.
And very affecting.
Thank you all.

Talking of the hand being attached to Julia reminds me of my favourite Tom Lehrer song.
And if you haven't come acroos Tom Lehrer, you've been missing out.
Google him immediately!

The song's called 'I Hold Your Hand in Mine' and it starts like this:

"I hold your hand in mine, dear;

I press it to my lips;
I take a healthy bite from your dainty fingertips.
My joy would be complete, dear,
If you were only here,
But I hold your hand in mine as a precious souvenir.

The night you died I cut it off,
I really don't know why.
And now each time I kiss it,
I get bloodstains on my tie....."

Can't remember any more.
That's enough for now anyway.

What Next?

A quiet day today, except for the lads in the bloodstream who I hope are keeping busy.

A Little Fatigued

I feel fine, if a touch fatigued, but appreciate the rest after yesterday's Excitement.

Not much to do now but wait for nature to run its course, hopefully in a Favourable Direction.

I'll still be blogging from time to time, but less on the medical front with luck.

So it'll be more to amuse myself from now on.

Unless there's a Crisis.
Don't even think about it.

Meanwhile, here's an interesting offering from my Old Mucker and Golfing Nemesis, Ian, taken from Chambers Dictionary:

Marrow (1) ... the essence or best part of anything
Marrow (2) ... a match, equal, like, a mate

Durham dialect that second one, apparently.

Make of it what you will, but I like it.

A la prochaine, mes Tireurs fideles de Lasers.

T-Day

Drip, drip, drip.
A veritable Day of Drips.
Not content with six hours of Cyclo and Myco (see yesterday's post) again today, I've also had eight hours of drip either side of the Transplant (four before and four after) to boost the fluid content of my blood, as well as the Transplant itself.  Lots of Simultaneous Dripping to reduce the overall time connected, but still a total of 13 hours in the day hooked up to the Drip Machine.

Two new skills learnt today: sleeping and dressing while connected to a drip.  Neither as difficult as they sound, so long as you're careful...  Thought about attempting a drip-
connected shower too, but decided that would be just too much Excitement for one day. Got to have something to look forward to.

The TBI was a breeze.  Lined up by my tattoos (see Tattooed post of 1st Feb) with lasers, so that it was accurately targeted, I just lay on my back and meditated for 20 minutes to the strains of Jeff Buckley singing Hallelujah!  They turned me round once at half time, so that both sides were evenly cooked and done to a turn.  Mustard, anyone? 

The TBI is the medical equivalent of a Tactical Thermo-Nuclear Device.  It kills all the fastest-dividing cells in the body, which takes care of the stem cells in the blood and bone marrow, but also includes the entire lining of the digestive system, from mouth and throat, all the way through the gut to the Other End.  So the most likely side-effects arise anywhere along that tract, from Mouth Ulcers to Montezuma's Revenge.  Can't wait!  Happily the damaged cells are replaced fairly quickly, minimising long-term harm.

Nurse Helen,
the Stem Cells (in the bag at the top),
my Spoons and Me

And then at 440 pm the Transplant itself, which was another drip, though that took just 55 minutes, the least time-consuming part of the whole treatment so far.  But the most colourful.  All the other drips are colourless.  The Transplant cells were a Life-Affirming, Health-Giving, Rejuvenating Blood-Red.  Actually they were rather more like chilli sauce or watery ketchup, but allow me a little poetic licence.  Just astounding to think that they were a vital part of someone else's body less than 24 hours ago.

So far my body has proved amazingly resilient to all this Rough Treatment and apart from a little shortness of breath when the stem cells went in and some fatigue at the end of the day (hardly surprising), I have felt no side-effects.  Astonishing how my heart immediately recognised the difference between all the chemicals we've been pumping in and these alien stem cells; hence the slight shortness of breath.  Anyway, the Alien Invaders are the Home team now, streaming into the system, weapons at the ready, settling into their new bone marrow home (which we hope they find very comfy and well appointed) and ready to deal ruthlessly with any surviving members of the Old Guard who were so brutally bombarded and disarmed this morning.  No, Dixie, I haven't joined the army; I am the Battlefield.  But the worst of the Destruction is over now.  Let the Rebuilding begin!

My Marrow Spoons have been by my side throughout the day, a constant reminder of their mysterious message of Hope and Meaning from beyond this temporary life.  Temporary, but not too short, we hope.

Finally, a big Thank You to everyone sending vibes from their Lurv Lasers.  Or just plain thoughts and prayers.  Not to mention all the texts, emails and blog comments.  All very gratefully received and surely a Valuable Reinforcement of the medical procedure.