So far so good...

Very tired, very Wobbly on my pins and still smelling of hospital, but I've had a great 24 hours at home, lying in front of the telly watching the cricket World Cup Final (very good game too), having the dryness massaged out of me by Julia and beginning to eat properly again.

It's going to be a long haul before I can get up the stairs without having to pull myself up the banisters without several pauses for breath and to give my legs a rest, but at least it's started well, I still feel OK and no health crises yet...

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!

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.

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."

The Gift of CLL

CLL

CLL as a Gift.
A strange way to regard a disease, you might think.
And so did I before it happened to me and I began this latest stage in my journey of Self-Discovery, for which CLL was the catalyst.

My reactions six years ago to the diagnosis of a potentially fatal disease were mixed.  Some obvious, some less so perhaps.
Some self-pity, some anger tantrums certainly.  A bit of 'Why me?'
But also a touch of feeling Special: not everyone gets CLL, you know.
I used to walk down the street, looking at other people and thinking "If only you knew that I have a Terminal Disease, you'd treat me with a bit of Respect!"  Daft, eh?
I used to fantasise about being mugged and fighting back, saying "I've got cancer, so I'm going to die anyway, so it doesn't matter what you do to me!"  Blimey, the weird things the human mind is capable of thinking...

And then, with a more mature realisation of the fact that my time on this planet might be more limited than I'd assumed, came a greater appreciation both of Life itself and of what I had right now.  We spend so much of our lives, or I do anyway, taking what we have entirely for granted and bemoaning the absence of what we don't have.  The effect of the CLL diagnosis was to redress this balance for me somewhat.  I guess this is why Buddhists are encouraged to meditate on Death.  A Conscious Awareness of the Transience of Life helps us to be more appreciative of its value.

In my more Reflective Moments I was thus led to a Re-evaluation of my life, Past, Present and Future.

Looking at my Past, I realised how lucky I'd been, and how varied and interesting my life had been thus far.  I've led a life of great privilege materially, compared with 99% of Human Beans on this Earth, lived in different countries, travelled widely, been married (twice!), had children, siblings, cousins, nephews, nieces and gathered a host of good friends from every Episode of my life so far.  It's been a very Rich, Absorbing and Exciting (sometimes perhaps rather too exciting) Ride.



Cleobis and Biton

If I were to die tomorrow (which I have no intention of doing, I assure you), even that old miseryguts Solon might have trouble denying that I'd had a Happy Life; or, as he might have said if they'd invented cricket in Greece in the Sixth Century BC, a Good Innings.  Solon, as you all remember, was asked by Croesus (as in 'rich as Croesus'; yes, that Croesus), as he stroked his golden staters (or whatever they used for dosh in ancient Lydia), just whom did he, Solon, consider to be the happiest man in the world.  Croesus clearly (and smugly) expected the reply "Oh gosh, it has to be you, Croesus, me old olive; just look at all your money, power etc" and only wanted it confirmed by Solon because the latter had the reputation of being a Wise Man.  However, Solon was also a Spoilsport and wouldn't play Croesus's game.  So he mentioned a bloke that nobody had ever heard of called Tellus, purely because he'd had children and grandchildren and died heroically in battle.  Croesus, clearly peeved, ignored this insult and asked "So who's the second happiest then?"  A slightly desperate question, one feels.  And bugger me if Solon still doesn't relent, but launches instead into a long and boring story about a couple of thick Greek rugger buggers called Cleobis and Biton who were pressed into service by their (evidently domineering) mother when she couldn't find the oxen for the oxcart and needed to get to the temple quickly for a service (a religious service, not a 5000 mile service for the oxcart, you understand).  So C & B dragged their Nagging Mater in said oxcart all the way to the temple, despite only having two and a half arms between them (see pic).  Whereupon  they promptly fell over and turned their toes up.  "So," said Solon, as if this proved his point somehow, "call no man happy until he is dead."  Croesus was not unnaturally getting quite cross now, according to Herodotus (for, as you recall, it is he who tells the story) and must have been thinking "Eh??? And who exactly thinks you're wise?"  So imagine his reaction when Solon confirmed what he must have been suspecting by now, that he didn't even come third in the Happiness Stakes.  At which point Croesus apparently gave up asking and called for the Dancing Girls instead.  Well, you would, wouldn't you?

However, it all had a Happy Ending because when, at a later date, Croesus had been defeated, captured and stuck on top of a pyre to be burnt alive by Cyrus of Persia, he realised (a bit late) that Solon might have had a point and called out his name three times.  At which, Cyrus (being a bit deaf) asked what he'd said. Croesus thereupon told him the story of Solon and the ridiculous Happiness Contest.  Cyrus sympathised mightily with Croesus and ordered his slaves to put out the flames and get him down from the pyre and they all lived happily ever after.  Or something.  But I digress.  Rather too lengthily perhaps.

And so from the Past to the Present (as opposed to Gift).
The Shadow of the possible consequences of CLL has made me so much more appreciative of what I have now.  I have much more materially than I really need, I'm ashamed to say. I have a Beautiful, Wise (and High-Earning) Wife, whose abundance of Common Sense so perfectly complements my lack of it. And a Handsome, Happy and Loving son. Then what better illustration could there be of the Wealth I enjoy than the comments on this blog, both on and off it? So many excellent friends sending messages of support and love.  These are the most important things I have, but there is much more of course.
With all this Now - right Now - how could I not feel Blessed?

Greener Grass?

If we stop to think, we all have so much, but it is Human Nature to take what we have for granted and to want what we do not have.  And maybe not just Human nature (see pic).   I am one for whom the grass has always seemed greener elsewhere. So much of our Suffering and Dissatisfaction is caused simply by our state of mind, our Attitude. CLL made me stop and think.  And now I try and encourage myself, with occasional success, to look at Reality with unblinkered eyes, to count my Blessings, not what I think I lack.  This I owe to CLL.

Since this post is already long enough, and because the Future never comes (since by the time it does, after all, it's the Present), appropriately I shall leave the Re-evaluation of my Future, which CLL inspired, for a future post.

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.

Drips and the Electric Chair

I had the third and last of my chemo-drips yesterday, but from today we're on to an extended regime of multi-drips instead.  Two different drugs (Cyclosporine and Mycophenolate) which assist in preventing the body from rejecting the Transplant.  This of course is a Good Thing (don't want my body rejecting the transplant without considering the alternative options properly; and I am rather relying on it to come to the sensible conclusion), but it does mean that I'm hooked up to the Drip Machine for 6 hours a day.  That's 3 lots of 2 hours, the last one starting at half past midnight tonight.  So a new skill required, sleeping while being dripped.  The nurses assure me it's no problem, so who am I to disagree?

And thank heavens for the Hickman line (see Hickman & Marrow post of 3rd Feb), which makes these drips easy and painless, and without which I'd have more punctures than the Tour de France.

Only side-effects so far have been wooziness and tiredness from the chemo (glad that's over then) and a very slight headache from the Myco-whatsit last night.  Nothing that a couple of paracetamol couldn't deal with though.

Which reminds me:
Q: Why aren't there any painkillers in the jungle?
A: Cos the parrots eat 'em all...

And the Electric Chair?

Not the US Death Row version, happily, but a very comfy Recliner which changes position at the touch of a button and makes sitting about all day a veritable pleasure.  However, I have had to evict Julia from it most ungallantly because it's not big enough for two.  Nothing to do with the fact that I can't get a look-in on my new iPad cos Julia is addicted to playing Harbourmaster on it.  Not entirely inappropriate for a one-time shipping executive, I know, and it's keeping her quiet, but also increasing her stress levels, I fear.

Had time to get out for a walk in the countryside with Julia this afternoon in between drips.  Grey, drizzly February day, but great to get out of confinement for a while.  Until/unless my neutrophils drop below a count of 1 (official definition of neutropoenia), I'll still be allowed out from time to time, which is v nice to know.

D-Day tomorrow: TBI (Total Body Irradiation - a 20 minute burst of radiotherapy) followed by the Transplant.  But the timing is still uncertain and won't be fixed till tomorrow morning (Wed 16th), so I'll try and get time to post a comment to this posting tomorrow when I get the schedule.  So that you can target all those Luuuurv Lasers.  I'm not expecting any pain (thank goodness) but my poor old Bod is in for a Biiiiiiig Surprise.  It's coping well so far.  Long may it last.

St Valentine's Day

Boom boo-de Boom

An appropriate day to pay homage to the Generosity and Altruism of Bone Marrow Donors, one of whom is having the stem cells harvested from his blood tomorrow for my benefit.

The donation process involves having a short course of injections to stimulate the stem cells from the bone marrow into the bloodstream so that they can be collected more easily.  These jabs can cause flu-like symptoms temporarily.  The actual collection of the stem cells typically takes about four hours, and involves taking the blood from one arm, passing it through a machine which separates and collects the stem cells, and then replacing the blood into the other arm.  So the donor is sitting for several hours with a cannula in each arm while this process takes place, before taking a few days off for recuperation.

So it's certainly not as simple or as easy as giving blood and requires the donor to take several days out of his or her normal life in order to accomplish this undeniable Labour of Love for someone he or she has never seen and doesn't know.  The whole process is conducted anonymously, so all I know about my donor is that he is a 25-year-old male from the UK.  I can only guess at his motives, but am enormously impressed and grateful in equal measure.


Sorry........couldn't resist it



All my three siblings very generously volunteered to be tissue-typed to see if their bone marrow matched mine and all were prepared to donate their marrow for me.  But since it turned out that none of them was a match, the Marsden contacted the Anthony Nolan Trust and found that I had no fewer than 722 matched donors on their register.  This is a much higher number than normal (typically a recipient will have matched unrelated donors in double or single figures) and enabled the Marsden not only to pick a donor whose tissue type matched mine perfectly but also to choose one with other medically useful matching characteristics.

And if his golf handicap is lower than mine and he can pass on that ability too, it would be a welcome bonus...

There's more information on www.anthonynolan.org

In and Out

Julia took me in to the Marsden this morning at 11.30 as scheduled.  I checked in to my room and then had my first dose of chemo administered through the Hickman line.  63mg of fludarabine, to be precise.  All went smoothly, though I felt a little light-headed and slightly disconnected from Reality for a while (so what else is new?).


In and Out in quick succession

And then they let me out again!
Hooray!
So I was home in time to watch the rugby before having a few zzzz's this afternoon.

Very civilized.

And we should be able to perform the same routine tomorrow, so my proper incarceration won't start till Monday.
That's the plan anyway.

The chemo is of course essentially Poison.

Targeted poison, but still poison.
The idea is to reduce my immune system to rubble with three days of fludarabine, then give it a final nuking with a single burst of radiotherapy on Wednesday, immediately before the Transplant.
That clears the battleground for the new troops to move in, i.e. the new blood stem cells from the transplant donor.

During this initial bombardment of my old (and malfunctioning) immune system, I am also being given lots of prophylactic medicines to prevent all sorts of likely infections taking unwelcome advantage of the lack of a resident defence force before the new one moves in.  That's the Theory.  Now for the Practice...

Last Week of Freedom

Had a lovely time last weekend at my Little Brudder Chris's house in Oxfordshire with my Nearest and Dearest friends.  Very aptly termed my "wrap-around love and good luck weekend".  A happy and relaxing time of excellent food, conversation and activity, surrounded by the people I love most.  Not to mention plenty of Fizz.  All highly sustaining and fortifying for the journey ahead.  And yet another example of how many blessings this disease has brought into my life.  If I hadn't been about to have a transplant, this weekend would not have taken place, nor would there have been the same shared significance, closeness or harmony in the atmosphere and communion between us.  How can I possibly see myself as a victim in those circumstances?  On the contrary, I feel exceptionally fortunate.  This is not putting on a brave face or making the best of a bad hand.  It is simply reality.


I'm the one on the left

 Chris had arranged for a falconer to come round on Saturday afternoon so we all went for a walk with a Harris hawk, passing the glove around between us as it swooped from tree to hand and back.  The local rabbits had made themselves very scarce, so the hawk had to content himself with chick nuggets from the glove.  Slightly pathetic sustenance for such a magnificent bird.  But he seemed quite happy.



And the Low Maintenance version

My wonderful weekend has been followed by quite a busy week, seeing friends and tidying things up before my anticipated month's absence from the house.  And nothing medical, I'm glad to say, this week.  Nice to have a rest from needles and nurses (well, needles anyway) for a few days before the Big Event.

And so many good wishes and loving thoughts from so many friends.  Not to mention cards, and hugs and kisses, and even presents...

Never has anyone entered a Lion's Den so well prepared and supported.  Especially when the LD is actually populated by pussycats.  I'm due in tomorrow at 11.30 and, though this may sound slightly bizarre, I'm rather looking forward to it.

Time to begin the Great Adventure.

The Marrow Spoons

Well, here they are at last, as promised.
And here's the story.

In July 2004, some nine months before I was diagnosed with CLL, my godfather Tom died and left me in his will what appeared to be a rather strange bequest, namely two silver marrow spoons.  Once a rather more common sight on dinner tables than today, marrow spoons are used for extracting the marrow from the bone in meat dishes, the classic example being osso bucco.  When Tom's wife sent them to me, she said she wasn't sure why he had chosen them for me, and although I daresay he wasn't sure himself at the time, they have now assumed a very evident significance.

Aside from the obvious bone marrow connotations, the silver is symbolic too.  First, because silver is traditional for gifts from godparents to godchildren; indeed, some 54 years ago Tom gave me a silver christening mug to celebrate my arrival on the planet.  Second, silver has long been known for its healing properties and is a powerful killer of microbes, both bacterial and viral.  Since Hippocrates first commended it in the 4th century BC, it was widely used for the prevention of infection before antibiotics were discovered, and hospitals, including the Marsden, use it even now, especially for the treatment of burns.  And third, Tom, a distinguished physicist at Cambridge University, studied, wrote and taught about the physics of liquid metals.  Although I don't know whether that included silver, it would be nice to think so.

For more on the healing properties of silver, this is an excellent website:
http://www.uk-cs.co.uk/index.htm

The actual transplant procedure that I will undergo involves no scraping or probing with marrow spoons, I'm glad to say.  However, it will now be clear how charged with Meaning and Mystery those spoons have become.  They are very special to me.  I keep them on my desk and think of Tom often when they wink at me.  He and the spoons will be with me for the Transplant.

Hickman & Marrow

Hickman & Marrow.  No, not a gardener's seed merchant, but a couple more medical procedures enjoyed today.  I won't go into too much gory detail, but if you're squeamish about hospitals or ops (only minor ones), probably best not to read beyond this first paragraph.  Unsurprisingly I find the medical stuff quite interesting because it's happening to Little Old Me, but I do appreciate that it's not quite the same reading about someone else's surgical experiences.  Less on the medical front after today with luck, because I don't have any more hospital appointments between now and admission on Feb 12th, barring a couple of quick visits to check the Hickman Line (see below).  And I know I still owe you the story of the marrow spoons.  Coming soon, I promise.

The Hickman Line is an intravenous catheter which is used when the docs need longer-term intravenous access.  They can put drugs in or take blood out without having to keep inserting needles.  It's a few inches of tubing inserted into a vein in the chest, just below the collar bone.  I'll spare you the picture here, but if you're interested you can Google 'Hickman line' and see what it looks like on someone else.  So a dose of sedative and some local anaesthetic, and ten minutes later I had my very own Hickman Line, including a couple of stitches to hold it in place.  It'll stay there until I'm out of hospital and on the mend, unless some joker pulls it out by mistake or I catch it in the mangle (ouch).

And while they had me on the table and under sedation, they took a needleful of bone marrow and a small sliver of bone as well, both from the back of the hip bone.  I've had this done before several times, though not sedated, because analysis of these bone and marrow samples is the best way to measure the progress of the CLL.  More accurate than blood tests.  So today's samples will serve as the baseline for my pre-transplant condition.  Again, if you're interested, there's a good diagram of the procedure here: http://www.healthline.com/adamimage?contentId=1-003658&id=1129

Personally I prefer this picture of a marrow:

Radioactive Pincushion

In the Marsden again today for heart and kidney tests to make sure my system can take the stress of the Transplant.  Scanned, blood-tested and injected, not necessarily in that order.  Six needles in all during the day, which is definitely my record.  The most interesting was an injection of radioactive tracer which they then followed through my heart and kidneys.  I have been advised to "avoid prolonged close contact with children for the rest of the day to prevent exposing them to unnecessary radiation".  Julia will be watching closely to see whether I glow in the dark when we turn the lights out tonight.