Day 8

With on eye to the future, an attempt was made today to reduce the amount of drug used to control the sickness. It is very powerful but unfortunately it leaves our poor captain with low blood pressure, dizzyness and a need to sleep more. Alas this morning’s reduction from 1.0 ml/hr down to 0.8 mls/hr failed to hold the nausea at bay over lunch and we’re now back on the original strength.

In addition the red blood count has really been bumping along at the bottom so a bag of the magic stuff is going in right now , as I write. Thank you all you amazing blood donors out there. If you’re B +ve it could be yours going in today.






And a second bag followed.... gad ! it’s like Dracular’s Den round here.

Day 7

One whole week gone by. Sometime in the next two or three days, we should be seeing the first glimmer of the (new) blood counts starting to kick in. Meanwhile the above contraption administers a continuous drip of anti sickness direct to my tummy, which mostly keeps the balrog at bay but it does make me very drowsy. So that's all my brains got space for today folks!

(thanks to the 'typist/secretary').

(secretary's note - it's always important to wear nice colours)!

Mr Bulgh raises his ugly head again!



A few extra platelets to top up the tanks






(posted by the secretary)

Day 6

The reverberations of the Melphalan Bomb have echoed deep and long throughout the planet Rodg. Day Zero, and days One, Two, and Three saw desperate attempts to bring Mt Oesophagus back to quiescence until finally on day Four a brief calm was achieved; only to be lost again on day Five.

Violent eruptions followed by extended periods of dreamy calm have been the pattern for days on end. (You will have noted our intrepid Captain has hardly been capable of coherent thought .... well done secretary).

Later today (+6) the first stimuli will be applied to the newly emerging, partially formed cells. In a few days time this will result in a rise from the zero counts of now, to the first indicators of a climb back towards normal. The stimuli will continue daily until a reasonable number (perhaps 1/3 normal) of ‘white’ neutrophil defenders are in place to afford some protection from disease. All seems to be going to plan so far... fingers crossed.

Day 5

Oh no, not more pills......
Rumbles of unrest down below...
Buckets at hand.....
Aargh, the smell of cooked meals ....
We have retched day five, oops reached even.


(Posted by the secretary)

Day 4

Pretty wiped out but listening to the ramblings of the secretary


The morning after the night before. The brilliant team seem to have at last succeeded in quelling Mt Oesophagus....(rumblings have moved further down the system but I won't go there).



(Posted by the secretary)

Day3

A welcome moment of calm



A brave attempt at jelly



.......at the ready.....





(posted by the secretary)

Day2

Bulgh!

(posted by the secretary)

Day1

Vive la France!
Bonjour les enfants.


















The delicate balancing act continues: Mt. Oesophagus rumbles away with nightly outpourings; and at dawn and dusk the ciclosporin teams are spreading dreams of integration, happiness and garlic amongst the bin men.

Meanwhile deep below the babes are settling in and preparing for their new roles within the planet Rodg. It is a time of quiet anticipation.

Day Zero

A few days ago (Friday) I mentioned a daily descent of stone steps towards a dark place. Yesterday I arrived at the bottom. Nearly three hundred miles away, in a nursing home by the banks of the River Ouse, my mother died. She must have been waiting for my arm. Together we took a step forward together towards the light.

T. -1 Sequel

A silent calm has descended on the planet, harmonizing with the celestial music of Aarvo Part, as the core settles back, held in a delicate balance. Now we can only wait.

After dusk the ciclosporin ‘clip’ team floated down gently and in the tranquil quiet of night began their delicate work on the snoozing bin men.
By dawn all will be in place.... Ready for the beaming across of ‘Les Enfants’. Precise co-ordinates are needed and the timing is still to be confirmed. They are to be beamed ‘direct’ from their nearby home planet, ‘Isle de France’. These babes are going to be fresh !

URGENT: UNEXPECTED FALLOUT FROM THE MELPHALAN BOMB.

PLANET’S CORE OVERHEATING.

EXECUTE ACTION PLAN B.

In an amazing feat of yet unexplained power, drones from the mothership orbiting overhead have been back and forth on the surface dropping ice floes down the throat of the planet’s only active volcano, Mt. Oesophagus, in an attempt to plug and cool the overheating core. Internal melt down has to be avoided at all costs. Two thirds of the breaking North Polar ice cap have been scooped from the seas as they drift south (they would have only melted anyway and there’s nobody in charge anywhere that will get off their self-interested political-backsides and do anything proactive).

Meanwhile, all through the day and long into the night and early morning, rivers were being diverted to pipe their waters into the deepest caverns in all parts, to cool and protect the essential life support systems hidden within that will soon be needed.

RED BUTTON DAY

As promised, the dustbin men survived, but only a few of their babes, I’m afraid. The trouble is they’re part of the problem. They can’t tell a Rodg lymph from a zombie and it’s likely that there will be a few scattered survivors. but not enough to rebuild the ecosystem. They’d just make a mess of it again anyway. No, what they need is outside help, from beyond the planet to repopulate; and this is where the French have come to the rescue.

On board our craft, in suspended animation, are an elite force of French baby lymph's. But before they can be taken down to the planet’s deepest subterranean caverns to begin replication, the dustbin men have to be dealt with. They can’t tell a Rodg lymph from a zombie but they can sniff out a French one at a 100 centimetres ! It’s the garlic.

After the detonation of the Melphlan bomb, in only a few minutes from now, there will be a lot of cleaning-up to do. What life forms are left on the planet will be on high alert. It is essential that the dustbin men are fitted with nose clips before ‘les’enfants’ go down, otherwise they’ll bin the lot. And so tomorrow, a special Ciclosporin team will get to work down on the planets surface sorting out the bin men’s olfactories.

Can the task be completed on time ? Will the new babes survive ? The most critical point of the plan is fast approaching.

THE RED BUTTON

( £5.00 on its way to the lucky winner)

Meanwhile.... down on the planet things are hotting up. Fludarabine has beamed back up and the ground is being prepared for the final solution. Communications may become erratic.

Captain Campath’s final day really ‘Bagged’ me. Incapable of creative thought all evening; just lay in bed with my life line, the iBook, and streamed Mozart into my head through stereo headphones.

The final obs. last night were done at twenty min. to midnight and first today were at ten to six; one snatches sleep when one can and strings lucid thoughts together as brain and body allow. The band when that is possible is ever narrowing; sometimes it’s four am.

The feeling of nausea was quite strong at 5 pm., which is dinner time here, and I did not feel like eating. Waves of hotness flowed through me and with my eyelids closed it was as if someone was turning the dimmer switch up and down in my room. Several times I opened my eyes to see if there was some sort of power surge happening to the electricity supply.





I haven’t mentioned the food before and I don’t think it will get mentioned again.

We are all - patients and nurses - on the ‘Glasgow’ diet plan.

Welcome from the bridge of the star ship Enterprise as I clutch the rails, cosmic wind streaming through my hair (well it would, if I had any) on our rescue mission to save the planet Rodg. There’s a crisis down there and the planet is in mortal danger. The dustbin men are on strike and alien zombies are taking over the whole lymphocyte population and replacing them with indolent teenagers. There are Fifteen year olds hanging about on every corner, doing no work and generally making a nuisance of themselves. Soon there will be no adults left on the planet and the whole ecosystem will collapse.

But help is at hand. Campath and his sexy sidekick Fludarabine have a cunning plan. Four days ago Campath was beamed down onto the surface and started bundling-up the whole lymphocyte population, good or zombie, in large bin liners labelled ‘rubbish’, and there were many. At last the dustbin men were stimulated into some action. The first few days of the cleanup were ugly, with piles of rubbish every where, but by the fourth day there were only a few stragglers left. Meanwhile, a day after her partner, the slinky Fludarabine beamed herself deep into the subterranean marrow, where the baby lymphs hatch, to seek out each and every one and snip their DNA strands. Slaughter of the Innocents for the greater good I’m afraid.

Campath will have finished his job today, and by tomorrow Fludarabine’s gruesome work below will stop and she will evacuate the planet prior to execution of the final part of the plan. The Melphlan Bomb.

Can their audacious plan possibly work? Will the bomb destroy all communication with the space craft?

Stay tuned for Chapter Two of the dynamic duo’s exciting adventures.

ps. Don’t worry about the dustbin men; they survive.

Yesterday, late afternoon, I was presented with a solitary white and Yellow capsule. Christine had come up from Galloway and was sitting beside me in the room. The capsule was Tamiflu and its message was immediately clear: the Swine flu tests on the nurse Lisa must have proved positive. Let’s hope the amazing clean air-system they have installed sucked it out !


As I fell asleep last night the sound of the blower transformed into a speeding cross-channel ferry, and I was out on the highest deck alongside its monstrous funnel. The deck plates vibrated under my feet and the deep bass of the engines below reverberated in my chest. The strong wind streamed across my face and I had to hold tightly to the rails.


At 2 am I was woken by Marie to have my temperature checked, it had been up slightly at 11 pm, and they were being ultra cautious, regards the flu, but all was fine. I slept right through until Michael, the only male nurse, came in for the early morning infusion in my line. I didn’t feel like getting-up and snoozed for another half hour before a little voice in my head said: ‘come on, you’ve got to exercise. This is the only solid bit of peace and quiet you’ll get until bedtime.’

Christine had spent the night at a friend’s house and was in early to see me and eager to tell me of all the goings-on. She had brought her bicycle up with her in the back of the car and so, as I got hooked up to my lines and gradually got more sleepy, she cycled off to explore the area and potential launderettes. (Providing me with clean clothes daily is quite a task, having observed my sister doing it for 15 weeks over the summer for my stroke stricken mother).

When Christine came back she was laiden with newspapers, up-to-date map of Glasgow, and a novel, ready for a siege. I’m afraid I am not much company just now, as I withdraw more and more into my shell under this drug onslaught. There is a body here in this room but there’s not much of me in it; I am trying to be in another place.

The rain never stops drumming on my ceiling. A full blown Atlantic gale rages constantly overhead, filtering the air I breath; while outside beyond the window, is parallel universe with calm blue skies.

Annie Horsley had her transplant a year ago. She described to me how she would wake in the night and scrawl down an idea in the dark and then wait until morning to see what was decipherable. Her words came echoing back to me at 4 am this morning as I scrawled. I thought ‘how typical of Annie’.

Each day I take another step down into this dark and narrowing stairway. I could turn back; but in 4 days from now I will reach the bottom and take one step forward, as the walking dead. A door will close behind me and there will be no return. This other amazing spirit will be infused into me and give new life and then forward and upwards I will go, along the dark tunnel, groping towards an unknown and distant glimmer.

This morning I was definitely ahead of the game; no headache and blood pressure acceptable for 6.30 am. In the intervening peace I managed to exercise. The ‘form’ was much more focused today but I only got 3/4 of the way through it before being interrupted for infusions in my line. I tried to pick up from where I had been and it went well, so did the whole thing again. This time without being stopped. I was aware of my body odour; the chemo must be oozing from me. I showered and was ready for breakfast before eight.

Last night I spent a frustrating hour trying to check my ‘pay-as-u-go’ internet balance but it requires registration with Vodaphone. That was mission impossible. Tried again this morning... same problem; maybe it’s at their end. Yet another faceless and remote organization. I would have liked to have spoken with someone but ‘due to a high volumes of calls, all our operators are busy’. Tried sending an e-mail but ‘Error: The page you are trying to access is not available. Please contact the administrator for more details’ came up. And so it goes....round and round. Meanwhile they carry on oblivious, happy in the knowledge that they are running an efficient and profitable business. There’s a rant for you.... and don’t get me started on Enron and British Gas !!

So if I disappear ‘off the radar’ it may just be that I’ve been eaten by a megalosaurus or abducted by an alien spacecraft.

ps. I managed on third attempt this afternoon but not without a bit of jiggery-pokery

T. -7

The anti-sickness infusion started a little later today - 6.10 am. It didn’t feel quite so ‘middle of the night’ as yesterday’s 5.30 am rousing. I need to get ahead of the game with this hospital routine. Undoubtedly I’ll be drowsy by early afternoon so I can catch up on sleep later. So with that in mind I just got up and did the Tai Chi hand-form twice. It was still rubbish despite the ward being quieter until after the staff change over at 7.00 am but it meant I was all showered and listening to the morning news bulletin on the radio when breakfast arrived an hour later.

Blood pressure was 153, first thing this morning, no wonder I had a headache and the Tai Chi was disconnected ! Mine is usually 108 but it climbed steadily throughout yesterday’s initial onslaught of Campath and overnight sleep was difficult. In the night I imagined standing on Carrick Shore in a howling gale, looking out to Murry Isles, and just filling my lungs with all that fresh sea air instead of all this filtered stuff in here.

10.20 am and the anti-histamine is in, the 1/2 hour Fludarabine drip has started, and Campath is to follow. Almost got through the ‘Form’ a third time before they came in and hooked me up, It was more focused without a headache but I still couldn’t get ‘in the zone’, however the exercise is good.

GOOD NEWS: Everything was through before 4 pm and a second dose of anti-histamine headed off the Urticaria rash before it got to yesterday’s state.

BAD NEWS: one of the nurses that came to my room earlier may have Swine Flu so all ten patients on the ward are to be protected with Tamiflu tonight and tomorrow morning as a precaution. Ye Gads... some cocktail I’m on !!

But the day outside just got more and more beautiful as it progressed. The light on the buildings around my window was quite impressive.

T.-8

Well, not much of a nights sleep. I’m sure I will get accustomed to the noise of the air filtration system but last night felt like an overnight journey on a North Sea ferry with a cabin down near the engine room. Then a 5.30am wake-up call for blood samples and anti-sickness infusions ! I was still in the shower when breakfast arrived a 8.00am sharp.

I rang Christine just after 9 to catch her before she got underway in the pottery. Grandfather had stayed the night having hatched a cunning plan to surprise her with a ready made supper on her return from Glasgow, bless him. I could hear the background sound of Inigo grabbing some breakfast before rushing off to college for the day. My room cleaner arrived in the midst of our conversation.

It was pretty much non-stop until mid morning but after the doctors had done their rounds and I’d signed my consent form there was a brief lull for 1/2 an hour. I had tried to do my Tai Chi exercises through all the hustle and bustle but struggled to stay focused. I tried a second round in the quiet spell and it was a little better. At least it got the muscles going and produced a bit of heat, even if it didn’t clear and relax the mental space as much as I’d hoped. The amazing thing is that my room has enough of a clear space at one side of the bed to do it at all.

A short while after 11am a machine for the drips was set up permanently alongside my bed. The antihistamine went in over the first half hour, along with a couple of paracetamol, quickly followed by small amount of chemo (mabCampath) again over half an hour. There was no alarming reaction to it so the flow rate was increased for the next period. It’s now way after 2pm and I’m still having the stuff dripped into me; I have written letters and eaten lunch sitting cross-legged on the bed. It will probably induce the need for an afternoon snooze shortly. I have a feeling that bedtime will be a lot earlier today than yesterday. The internet signal looks very iffy from my bed; I may have to wheel my drip machine over to the window or leave until later. Yeah, maybe ‘later’ sounds good.
Two hours later..... antihistamines do make you drowsy!!Did I say there were no alarming reactions? Bring on the next anti-histamines quick !

Up at 6am. So wide awake with last minute thoughts to sort out. Still pitch dark in the bedroom but the cats knew it was just before dawn and were both out somewhere. Downstairs the bread maker, on an overnight timer, was filling the kitchen with a fresh baked aroma. 30 minutes later I could hear Christine creeping about above, not knowing I was already up. Shortly after 7am. the car was filling up with bags. Clothes, books, CD’s, camera, computer, paper, pens and pencils. Everything I might need for 6 weeks or more, if I still have a brain though it all.

The 100 miles or so, over the Galloway hills to the hospital, went smoothly. A very still morning with mists hanging over the upper parts of a mirror calm Loch Ken. The very modern, single room I was assigned was much nicer than I’d expected which was a relief considering I am to spend the next 6 weeks in it.


After unpacking, arranging the space, and testing to see if there was a mobile and mobile internet signal ( and there was !) the Hickman Line dressings were changed by a nurse and blood taken for testing for infections. After lunch, while Christine was away having a sandwich, Shilpa, the doctor, made a physical check for any signs of lumps around the lymph nodes, but I think I was clear. Then it was off for a walk across to the old hospital building for a chest X-ray. We knew there was to be a bone marrow biopsy around 4pm back at the room but there was a good hour in hand so we explored the whole vast leafy complex that once made up the adjoining mental hospital. Squirrels, magpies, and possible parking spaces; the hospital parking is a nightmare.
It made sense for Christine to get off before the 5 O’clock traffic jams so we made our partings in the 4th floor corridor and I returned to my fate. The biopsy wasn’t too painful and, while I was still on my back letting the hip bone clot and settle, a second doctor called Mave came and covered my chest with electrodes and wires and tested my inner workings.
So that’s about it for day one or T.-9 as they are calling it, (nine days count down to the transplant). They should now have a base line of my present condition with which to compare any changes since the last biopsy in May and with any in the weeks, months, and years ahead.
Ah, not quite ‘it’. 9.30pm and a pile of tablets have just arrived. Lost count of how many, 8-9 ? Took a second glass of water to swallow them all !

Here we go