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.

Tattooed!

In the Marsden today for the first of four appointments on consecutive days this week.
All sorts of interesting preparations for the Big Day.

The dragon tattoo I didn't have

Today they were setting things up for the single dose of radiation that I am due to have on the 16th Feb immediately before the Transplant itself.  The idea is to zap my old (malfunctioning) immune system just before introducing the new one from the donor.  So I had a CT scan (lying on a bed going to and fro through a giant ring of shiny humming machinery) so that they can determine exactly how much radiation to give me on Feb 16th and where to aim it.  And in order to ensure that everything's lined up on Feb 16th exactly as it was today, they moulded the bed around me with a vacuum bag filled with polystyrene granules and then tattooed my chest and stomach.  I asked for a dragon, but was only given a couple of very central freckles.  My first tattoos though.

Back tomorrow for kidney and heart tests.

The Porpoise

The Primary Porpoise of this blog is to allow my Friends and Family to keep up with my progress during the forthcoming Bone Marrow Transplant without having to keep asking Julia how I am every time they think of it.

The Secondary Porpoise is to amuse myself.  So as well as Medical Bulletins, I intend to write all sorts of other rubbish which you may or may not want to read.  Up to you.





A Primary and Secondary Porpoise cosying up to each other