Caught between the Devil and the Deep Blue Sea

Well, just in case I was becoming a little presumptuous in my hope for and anticipation of progress on this tortuous journey, Fate duly delivered a sharp rap over the knuckles last weekend, as I suspected she might.

It came in the form of increasing back pain.
The dull ache in my middle back, which has been my constant companion for a while now, took a turn to the South, slipping down a few vertebrae to my lower back and bringing with it an occasional shooting sciatic twinge in my right buttock.

Fortunately this started happening the day before my regular Monday clinic at the Marsden, so diagnosis and treatment were prompt, without adding to my already bulging schedule of hospital appointments.

The cause of the problem is probably the long-term use of steroids, which are vital for controlling the uncomfortable effects of GvHD such as dry eyes and mouth (both of which are still fairly severe and would presumably be even worse without steroids), but they also reduce bone density and can cause osteoporosis.  Bit of a Catch-22 situation unfortunately.  Or, to put it another way, caught between the Devil and the Deep Blue Sea....

An X-ray revealed that my vertebrae are slightly compacted and some have hairline fractures. The pain I feel when moving is therefore caused by the muscles (what few I have left) pulling on these cracked vertebrae when I tense them.

The medical treatment in reeponse is three-pronged: calcium supplements to rebuild the bone density, a muscle relaxant to control muscle spasms, and codeine to dull the pain. So far so good this week, although I am moving even more slowly and gingerly than before in order to avoid upsetting the demon with the sharp fork.  Meanwhile I have had the first of what should be weekly visits from a physiotherapist who has given me some gentle exercises to do, and I'm still getting out for a totter every day and trying not to remain sedentary for too long at any one time.

Another interesting physical change, to go with the darker hair mentioned in a previous post, is that I am shrinking, no doubt due to the compaction of the vertebrae. I've lost about 3 inches since before the transplant!

....and After

Before....

 Like these December days, I'm getting shorter and darker, though happily, as you can see, still every bit as irresistibly attractive.

Progress?

Progress??
Really???

I don't like to tempt Fate for fear of a sharp rap over the knuckles in the form of another unforeseen setback, as so many times before, but although I'm by no means out of the woods yet, there are definite signs of improvement since I last posted two weeks ago.

The most important change is that I have more energy, both physical and mental, which makes a huge difference to my quality of life because I have greater capacity for enjoying it, rather than just tolerating it. It makes me rather better company for Julia too, instead of the Miserable Moaning Minnie she usually lives with.

Medically my blood counts have remained stable for the last fortnight and I've suffered no new afflictions or infections, which is already a very welcome change from the norm of the recent past. The sterile ulcer on my right eye has apparently healed, so I am no longer in immediate danger of going blind which is nice!

And my back, though still painfully stiff, especially in the mornings, is much better than it was. Massage never seemed to make a positive difference, but regular use of Deep Heat cream and a conscious attempt to take a little more exercise do seem to have helped. I'm not exactly the lithe and supple athlete I never was, but at least it's less of a struggle than it used to be to get out of bed and hobble downstairs to the safety of the armchair.

So the major daily issues I am grappling with now are breathlessness, which I feel is at least partially linked to the back pain, and eating. I still get all my nutritional needs overnight through the NG tube up my nose, but am hoping that a combination of gradual general improvement in my condition and slowly reintroducing my palette to normal food will start to make a difference there too.

As for the breathing, I sometimes feel as if there is a demon on my back who, after jabbing me with his pitchfork, then takes pleasure in squeezing me so tight around the middle that I am fighting to take the next breath. Slightly scary occasionally, but so far no worse than that.




To quote someone rather more famous than I about a situation of rather greater significance: "Now this is not the End, it is not even the Beginning of the End, but perhaps it is the End of the Beginning".




Light at the end of the tunnel?
Let's hope so.





PS re my post of 11th November, the new Archbish was in the year above me at school, I discover, so maybe that's why our paths never crossed

Donkey Derby

I feel like a donkey.

Not hung like one perhaps, and not always as obstinate as one.

But I feel like a donkey in a derby.

 

My rider is dangling the Carrot of Recovery tantalisingly in front of my nose, always there but always just out of reach, and as I strive for it more desperately with each stride, he belabours me the while from behind with an armoury of sticks, using a fresh one every time he breaks one over my backside.

This week's fresh stick is a severely stiff back which makes any movement a trial and also makes me grunt and puff at any activity, however minor, like sitting down or standing up or turning over in bed. My back has been complaining for a while, but this week it has been doing so much more loudly than before. Every time I move, it grabs me round the middle and squeezes the breath out of me. So what to do?

We went to the GP, who at least confirmed that he thought it was muscular-skeletal and not a symptom of some deeper or more sinister malaise, and he will arrange for me to be seen by a physiotherapist. We suspect it is a product of my extremely sedentary lifestyle which consists mainly of struggling from the bed to the armchair and back again, and Julia has been encouraging me to take more exercise, even if it's just walking round the block once or twice a day. She is right of course, loath though I often am to admit it because I like my bed and my armchair. And I'm lazy. Though in my defence I would say that I'm not exactly brimming with energy at the moment.

So, more exercise it is, which, coupled with my continuing weekly massages, does seem to have made a difference in the last few days. Perhaps the carrot is just a little bit closer....

I have to administer drugs to myself three times a day with a syringe via the naso-gastric tube and often listen to music as I do so to relieve the tedium somewhat, pumping the syringe in time to Roy Orbison's 'Only the Lonely', to pick an appropriate example. By such means do I wring a few drops of enjoyment from the husk of my desiccated life. And it reminds me of my dear cousins Linda and Eli, with whom I shared a house in my early twenties. They invented a Dishcloth Dance to alleviate the boredom of drying up after dinner, sashaying and pirouetting round the kitchen brandishing dishcloths and various items of tableware. Happy memories! And it has just occurred to me now what an appropriate use of CHOREography that was. Geddit??!

Finally to the new Archbishop of Canterbury, why not?

He is 3 months older than me and educated at the same institutions of Eton and Trinity College, Cambridge, so I would assume we were in the same year, unless he was very bright and a year ahead or, whisper it soft, a bit thick and a year behind. Whatever the case, I have zero recollection of either his face or his name. And this time it's not just my Forgettery, because I checked with some old schoolmates who couldn't remember him either, except for one who had a vague memory of someone 'quite small?'. So sadly I cannot ring him up and ask him to put in a few words on my behalf with the Big G. Shame. I could do with a little assistance from that quarter.

 

Breathalysed

More tests this week.

First, I was breathalysed.


This was a Lung Function test to try and get to the bottom of my constant shortness of breath. I spent half an hour blowing into a plastic tube in various rhythms, which established that my lung capacity is about half of what it was when I was last tested in Jan 2011 just before the transplant. Quite what we can do about this, if anything, must wait until the docs have fully analysed the results.

Then I had a 24-hour ECG test which entailed carrying in my pocket a small machine attached to my chest with several wires, measuring my heart rate and recording any fluctuations to compare against a diary I kept of any palpitations (none) and shortness of breath (plenty). We await official notification of the results, together with advice on any action to be taken, but the absence of a panicky phone call within a couple of days of the test is at least good news initially because it means they haven't discovered anything critical.
Meanwhile the mention of heart fluctuations reminds me of the Chinaman travelling in Europe who changed money on different days and was shocked at the difference in the exchange rates he received. When he complained, the bank clerk shrugged his shoulders and said simply "Fluctuations".
To which the Chinaman retorted: "And Fluct-u-Eurlopeans too!"


In other respects I still seem to be improving very slowly.
My back is less stiff and painful, thanks in part at least to the weekly ministrations of Marco the Masseur and to the gentle exercises he prescribes.
My eyes are still often irritable and my vision blurred, but the threat of blindness seems to have receded and the antibiotic eyedrops are being gradually reduced without any adverse effects. Meanwhile I'm still pouring in plenty of lubricating drops and swabbing regularly with sodium bicarbonate solution to combat the dryness and irritability.
My mouth remains obstinately intolerant of any food or drink other than lots of water and small quantities of icecream which means I still have to rely on nocturnal feeding via the naso-gastric tube.
And my memory continues to be patchy and unreliable, particularly short-term.
But overall I can see small improvements, both physically and mentally, and these hints of recovery are willingly embraced and encouraged.
Slow business, though....

Finally, an answer to the question I eventually remembered to ask the doctor at clinic last week, namely is my darker hair due to the influence of my 25-year-old bone marrow donor??! Alas, nothing so romantic, it seems, but merely another symptom of GvHD. Ah well....

Ite and a Bite

This week I managed to get out on my own socially for the first time in nearly two years!
Quite a milestone.
The occasion was a long-standing date with some old chums from school. Classics was no longer fashionable in the 1970s and there were only five of us out of about 250 in my year at Eton who chose those subjects at A-level.
Sadly, one of those five, Richard Pemberton, died in January of this year after a long battle with cancer, so last Tuesday it was just the surviving four who met for dinner at Boodle's club in St. James's. Unfortunately I couldn't share in the delights of a very enticing menu, and the only sip I tried of what was no doubt a most acceptable white Burgundy tasted like battery acid, but the company and conversation were highly enjoyable. The latter was a mixture of catching up since we last saw each other two years ago (since Richard and I were both crocked last year, so we didn't manage to meet then) and reminiscences of classroom characters and jokes which prompted almost as much giggling as they did nearly forty years ago. And of course we drank to Richard too;

Richard

I took with me this picture of him from his blog, taken almost exactly a year ago, so he was with us in image and in spirit, if not in body. Indeed, so congenial was the evening that I managed to stay for longer than I had anticipated and was very sorry that I had to leave when the others retired to the comfy chairs for coffee, but by then my feeble reserves of social stamina were exhausted. However, I am already looking forward to next year's reunion, when I hope I shall be able to participate more fully and for longer. Inshallah.

On the subject of dinner, my rare recent attempts at eating have not met with much

Ashes

success, I'm sorry to say. In the last week I have tried mouthfuls of both sweet potato soup (specially made forme by Julia) and avocado, but it seems that anything I submit for my palate's approval, however mild-tasting, turns to ashes in my mouth, as well as making me feel as if someone has pulled very hard on a drawstring attached to the inside of my cheeks. Not a pleasant experience.

After last week's excitement with the bandage contact lenses and then the unscheduled detachment of the Hickman line from my shoulder, I am glad to say that both issues are showing improvement this week. Although my vision is still a bit blurred and milky, it is much better than it was with the lenses in, and I can at least read well enough, for example, to type this blog after a week's course of hourly antibiotic eyedrops, now reduced to six times daily. We'll see what the eye doc says tomorrow.

And happily the docs at St Thomas's agreed to allow me a fortnight's grace before reinsertion of the Hickman line, so there was no ECP treatment last week and the shoulder has another ten days to recover from the ill effects of its rough treatment last time.

Finally, Julia has remarked recently on the fact that my hair is darker and less grey than it was before all this treatment, so we are both wondering whether this is a side-effect of having a bone marrow transplant from a 25-year-old!  Must remember to ask the docs at clinic tomorrow...

The Eyes have it - but what?

Let's start with the good news...

Overall I've felt much better in the last couple of days: more 'with it' mentally and not so plain ill!
My back seems to be improving too: fewer and less violent spasms, though it still reserves the right to surprise me from time to time!
The infection in my big toe (not sure if I'd mentioned that one before) is also getting better, having been dealt with by a chiropodist who cut back the offending toenail which was the cause of the problem (ouch) and tidied up all my other tooties too.
And the itchiness which was so virulent before is less urgent and uncomfortable now.

However....
Plenty problems still remain.
I am still very weak and the slightest exertion makes me breathless.
My mouth is still very dry and I still have to 'eat' via the NG tube, although thanks are due to my cousin Patience for recommending a brand of cholesterol-free ice cream which means I can continue to enjoy the only normal food my poor mouth can cope with.

Not mine, but pretty similar

My nails are still very brittle and split easily, often tearing down below the quick.

But the real excitement this week has been to do with my eyes....


Last Tuesday I had so-called 'bandage' contact lenses fitted, which cover not just the iris but some of the cornea as well in order to retain as much moisture in the eye as possible. For a couple of days this provided a huge improvement and my eyesight was clearer than it has been for weeks. However, on Saturday suddenly my vision was 
blurred and milky, as if I was looking through a gauze screen, and my right eye became sore and inflamed. On Sunday I removed the contact lens in the right eye to see if it made any difference either to the soreness or to the clarity of vision compared with the left eye. It didn't! By Monday morning, my eyesight was so poor that I could only see things in silhouette, colours were dimmed and I could make out no detail at all. As luck would have it (and the Lady has not often blessed me thus over the last two years), I had an appointment that very morning at the Sutton eye hospital.

Having established at the initial eye test that I could barely read the top two lines on the chart, never mind further down,

the consultant had a good look at both eyes through her scope machine and advised that the outer layers of the cornea in both eyes were damaged and that there was a sterile ulcer in the right eye, causing the soreness. When pressed on the possible consequences, she started talking about breakdown of the cornea to the extent at which the eye has to be surgically removed and/or total blindness! As you can imagine, this was a bit of a rude shock to both me and Julia.

However, all is not yet lost. The final outcome remains uncertain I have been given antibiotic eyedrops to apply every hour(!) and antibiotic capsules to add to my list of drugs to be taken orally. I have to go back on Wednesday to check progress and am being referred to Moorfields eye hospital for a second opinion.

Meanwhile, Dr Julia has unearthed through research on the internet that sterile ulcers are not uncommon in those who have suffered from dry eyes for a long period, as I have, or in wearers of contact lenses (suspicion falls on the prescription of those for my condition). Dr J also advises that the most serious danger arises if the sterile ulcer becomes infected, so I am trying to avoid introducing any infection via my fingers for example.

Anyway, so far so good and my vision is already better just a few hours after dumping the lenses and starting the new treatment. Mind you, that's what I said after the lenses were first put in too, so stop counting those chooks right now.

Don't even try counting them
 

Stop Press: eyes better, back worse, nails still rubbish; and the LTS line inserted in my jugular came out overnight! No blood fortunately, but very annoying because it was only put in ten days ago, the bruising hasn't yet healed and it is needed for ECP treatment this Thur/Fri. Contacted St T's and awaiting their recommendation on what to do next. I favour leaving it for another fortnight before reinsertion because the shoulder is still so raw, but that means skipping another ECP session, so we'll see what they say.
 

Tubes 'n' Bruises

Bit of a busy ten days on the medical front since I last posted and nothing much else to write about, so if you can be bothered to read on you're going to get another dose of tiresome, and sometimes unpleasant, medical procedures, I'm afraid. At least I managed to watch the climax of the World 20/20 cricket Cup on tv as well. Both semis and the final were all cracking games.

However, to return to less agreeable topics, last Sunday night my NG tube went on strike and declared itself blocked. This, if you've been attending, you will remember is the tube that goes into my stomach via one nostril and carries overnight the only nutritional sustenance I currently get, since my mouth is too dry to allow me to eat in the normal approved fashion. So I had to go without my grub on Sunday night and ask the nurses at the Marsden on our usual Monday clinic visit to replace said tube. Unfortunately this was not as straightforward as it should have been...

A happy NG tuber

The first two attempts wouldn't go past some unexpected obstruction in my nose, probably an unsavoury combination of snot and blood clots (I warned you it wasn't pleasant), so the unfortunate nurse unwillingly causing me this discomfort decided to try the other nostril, which happily proved a better bet and the tube went in smoothly. However, having a tube pushed up your nose once is bad enough; three times was really a bit beyond the pale.

While at the Marsden, after the NG tube excitement, I also had a CT scan on my chest to see if there was an identifiable infection causing my phlegmy cough which won't go away. Happily we learned at clinic yesterday that it revealed nothing serious and the cough is gradually improving anyway. The docs have also removed Ponsaconazole from my lengthy list of drugs as the one most likely to be responsible for my low Blood Pressure, as correctly identified beforehand by Dr Julia after reading the blurb in the box! Only problem with this is that I now have to have an hour's infusion of a different drug through my new LTS line (see below) every week instead.

Going back to the subject of new tubes, you will recall that the LTS line in my shoulder, which carries the blood to and fro during my fortnightly ECP treatment, pulled out some weeks ago when the stitch broke. It should have been replaced two weeks ago, but had to be postponed because of my sudden and unexpected admission to King's Camberwell in the TIA episode reported in my last post. So it was replaced last Thursday instead. Happily the shoulder was anaesthetised and I was sedated, because there was a lot of pretty heavy pulling and pushing and the shoulder is now sporting some handsome bruises.  But at least the new line works well and the bruises (and soreness) are slowly diminishing.

Medical Update

Apologies for the long gap between postings, but I've had rather too much Excitement over the last week to be able to publish anything.

 

It all started two Wednesdays ago when I went to get my hair cut.

The barber is only about 200 yards from our front door, but that's quite a long walk for an Old Crock. I counted my paces (350) and then had to negotiate 3 steep flights of stairs down to the basement. When I relaxed into the barber's chair, I was therefore exhausted and when I tried to say "I'll have a Mohican please" or "Give me a full Afro", pure gobbledegook came out! I simply couldn't form any words and sounded as if I had an extremely severe case of cerebral palsy. As you may imagine, this was a bit scary. It lasted for 3 or 4 minutes, during which time the poor barber, who didn't speak much English and probably thought the problem was his lack of sufficient vocab rather than a speech-impaired client, dashed upstairs to get his colleague to interpret. Eventually my powers of speech returned and I settled for a short back and sides.

 

However, when this loss of speech, preceded again by a dizzy spell, recurred that evening, Julia took me to A&E at St Thomas's hospital. Which was the start of a Nightmare night, involving umpteen tests, hours of waiting on extremely uncomfortable chairs in hospital waiting rooms and a transfer to King's Camberwell in the early hours before I was finally given a bed at about 6 am the following morning. More tests followed that day: multiple scans, X-rays and blood tests. The only thing confirmed by all these tests was that I had suffered a series of mini-strokes or TIAs (Transient Ischaemic Attacks) as revealed by the MRI scan, so I was kept in the Stroke Unit at King's for observation.

 

I was kept in over the weekend too because I had a few more dizzy spells followed by temporary loss of speech. However, once I recognised the advance symptoms, and sat down as soon as I felt dizzy, I always recovered quickly and avoided the speech problems which were the most worrying issue. But the Big Question remained unanswered, namely Why were these spells occurring?

 

And it remains unanswered yet, although the Major Suspect is Low Blood Pressure because the spells occur when I get up quickly. I suspect this has been exacerbated by a prolonged period on a cocktail of drugs, but there's no easy way to change this because other aspects of my condition necessitate their use, and the cocktail has now been increased by drugs for dealing with low blood pressure! To encourage the blood to keep flowing, I'm back in Surgical Stockings too - very fetching. But at least there is no evidence of anything more serious such as roving blood clots.

 

The only other abnormality revealed by the battery of tests was a high cholesterol level, which has been blamed on my ice-cream-rich diet, given that it's the only normal food I've been able to tolerate. So I've had to give that up for the time being as well. Disappointing, but perhaps not too fundamental a loss, at least temporarily.

 

And now I'm back at home again, which is always good for the spirits, having been released from King's on Tuesday evening after 48 hours without a dizzy spell. I am taking it easy and doing what I can to keep the blood going round, such as getting up (carefully!) and moving about every hour or so. Not too exacting a regime, I'm sure you'll agree.

 

Apart from that, I'm fine.

Oh, apart from my eyes as well of course, which are still very sore and don't work very well.  Otherwise, I'm fine.

Oh, apart from my mouth, which is still bone dry and means I have to eat via the NG tube up my nose overnight, instead of orally and by day like a normal Human Bean. Otherwise, I'm fine.

Oh, apart from the fact that the slightest exertion, such as turning over in bed, leaves me exhausted and breathless. Otherwise, I'm fine.
Oh, apart from the constant itchiness all over.  Otherwise, I'm fine.
Oh, apart from having to cut my nails down to the quick and file them smooth because they are so brittle that they split very easily, then catch and tear......ouch!  Otherwise, I'm fine.
Oh, apart from the frequent muscle spasms in my back, triggered by any sort of movement.  Otherwise, I'm fine.

Oh, apart from my general weakness and lack of energy......

Enough! I'm fine, ok?!

 

Tube Strike !

No, not this Tube...

Tube Trouble again....

No, not that Tube, nor the NG tube which carries my nocturnal grub this time, but the tube inserted in my jugular vein via my right shoulder which is used every fortnight for the ECP treatment, taking blood out for exposure to UV light and then pumping it back in again.

Somehow on Friday night (why do these things always happen on a Friday night? at least it wasn't a Bank Holiday weekend this time) the stitch attaching this tube to my shoulder broke, and when I awoke on Saturday morning it became apparent that the tube had slipped from its previous position and there was therefore less of it still inserted in the vein. No blood or pain thankfully, but it did require another visit to St Thomas's on Saturday morning to have it checked out.
The X-ray revealed that only the very tip of the tube was still in the vein, so they taped it securely to my chest to prevent it moving any more and I will get it sorted (either pushed back in or, more likely, replaced) at my ECP review appointment with the consultant at St Thomas's, which as luck would have it is on Tuesday.

No excitement otherwise since my last posting just over a week ago.
And not much change either.
I'm still weak and wobbly and can't eat solid food, I'm still on the same cocktail of drugs, my eyes are still very poor and I'm still very itchy all over, varying from Moderately, through Seriously, to Incredibly.
However, looking back over the previous weeks and months, I can see General Improvement overall because I do feel slightly better and am capable of slightly more activity, but it is still imperceptibly slow going.

Condition Stable...
sorry, couldn't resist it!

But hey, it's 4 months since I was last discharged from hospital and my condition at least continues to be stable.

Sloppy, Slushy and Mushy

All these terms can aptly be applied not only to my search for suitable foods (see previous posting of 3rd Sept), but also to the state of my brain and of my emotions at the moment.

Food first.
Nothing new to report, I'm afraid.
I still haven't mustered the courage or enthusiasm to try anything other than ice cream yet, although Julia has thoughtfully bought a few possibilities. I know I must start, if only to take the first steps towards getting rid of this horrible tube up my nose, so maybe I will manage something this weekend. Pathetic lack of willpower, I know.

As for my brain, the combined effect of drugs and encephalitis have brought about some interesting(?) changes. My intellectual faculties, such as they ever were, seem relatively unimpaired. I think reasonably logically most of the time and can still do the Times crossword, but my Memory is all over the place. My long-term memory appears fairly intact, but I struggle to remember what I did yesterday or even a few hours ago, although if I am given a prompt, the appropriate image will suddenly spring into my mind.

I know nothing about the workings of the human memory, but it seems to me from recent experience that we retain a vast quantity of mental images and that the trick is managing the recall process. It's as if I have in my head a huge library of memories, but have lost many of the pages of the catalogue! So I can't find them when I want them and indeed have no idea that they're there until someone or something else presses the right button. This doesn't however explain why my long-term memory is more reliable and more easily accessed than the short-term, which remains a mystery. I can only assume that l-t and s-t memories are on different shelves in the library and that my mental librarian takes a while to catalogue the s-t ones and move them to the l-t shelves. Or it may simply be in many cases that I struggle to recall anything that's happened since the Transplant in Feb 2011 because I haven't been with it for much of that time.

And so to my Emotions.
Presumably as a result of going through what I have over the last 18 months, they are pretty raw at the moment, meaning that I find I have much more empathy for my fellow Human Beans than I used to, especially if they are suffering, and that I blub at the slightest provocation! The empathy is a Good Thing, I think. The blubbing is just embarrassing....













One side-effect of this emotional development is that I find I have a strong taste for soppy music and have been downloading a collection of my favourite ballads and Luuuurve songs.
To date this comprises the following (in no particular order):
Memory - Elaine Page
Killing Me Softly - Roberta Flack
Sorrow -David Bowie
San Francisco - Scott McKenzie
I want to know what love is - Foreigner
Always on my mind - Elvis Presley
Can you feel the love tonight - Elton John
The first time ever I saw your face - Roberta Flack
I can't help falling in love with you - Elvis Presley
Goodbye Yellow Brick Road - Elton John
My Lady D'Arbanville - Cat Stevens
Unchained Melody - The Righteous Brothers
Wonderful Tonight - Eric Clapton
I don't wanna talk about it - Rod Stewart
Without You - Harry Nilsson
Yesterday - The Beatles
Sailing - Rod Stewart
Morning has broken - Cat Stevens
You don't bring me flowers - Neil Diamond & Barbra Streisand

Mostly 70s I know, but that is My Era for pop music after all.
If any of you can suggest any Glaring Omissions in this collection, please let me know.
Blog it to me, baby!

Sleeping Sickness and Soldiering On

Well, no, I haven't actually got Sleeping Sickness (one of the few afflictions to have passed me by so far, it seems), but I am doing an awful lot of sleeping.



If I don't have to get up for any reason (usually a hospital visit) I quite happily sleep for anything between 12 and 15 hours a night. That's a lot of sleep for a gwown-up. Hope it's doing some good. But if it is, the effects are not obvious yet, which also goes for the ECP. No appreciable change in eyesight, dry mouth or overall itchiness this week unfortunately.

So what to do?
Well, what can one do except Soldier On in good old British fashion?


Oh, and Rant and Rave a bit. And Swear and Throw things. Not so British, that.
But the Frustration has to come out sometimes.

Two hospital visits last week:

Tuesday, unscheduled visit to A&E at St Thomas's to replace NG tube which became blocked on Monday evening and refused to soldier on. Can't be British then. Tube replacement is not a very enjoyable procedure and was performed this time by a junior doctor who hadn't done more than one or two before. Having removed the old one without mishap, he pushed the new one up my nose. Unfortunately it went down my windpipe instead of my oesophagus; cue lots of gasping for air and urgent hand signals by Yours Truly. However, the second attempt was successful, happily, and the noo toob now works fine.

Thursday: appointment at Guy's oral medicine department, at which the consultant made it clear that my saliva glands have been permanently damaged by the radiotherapy and chemotherapy I've had and are very unlikely to produce more saliva than they do now. So at least the message was clear, though not very welcome of course.

The question now is how to deal with it?
Unless I want to continue being fed by NG tube for the rest of my life, which I most certainly do NOT, I have no option but to try and find sources of nutrition which my poor dry mouth can cope with. This means eating Sloppy Stuff like ice cream, rice pudding and baby foods,

and definitely not dry things like bread or crisps which soak up what little saliva I do produce and form themselves into an unswallowable ball of dry paste in my mouth. So this week I will start experimenting with various foods to see what my mouth can tolerate and to try and construct a menu of suitable things which are both edible and provide enough nutritional value to allow me to end my dependency on the tube.

Julia had the week off work and had hoped to manage a few Outings with me as welcome relief for both of us, but what with hospital visits and marathon sleeping sessions, we didn't get out for pleasure at all. Poor Julia did manage a couple of evenings out with friends  and some daytime activities for herself, but it hardly constituted a Holiday, which she is in sore need of to ease the burden of drudgery involved in looking after her Ailing Husband.

And so we carry on soldiering on....

Eyes, mouth and skin

This week is a week without the usual hospital appointments since Monday is a Bank Holiday. Hooray!
And Julia has the week off work.
Double Hooray!

Everything was fine at the Monday clinic last week and I continue to take minuscule steps forward in terms of blood test results, which is at least better than going backwards. A lot better!

I also went to Sutton eye hospital, where I was prescribed a revised cocktail of eyedrops: less medicine, eg antibiotics, steroids etc, and more lubrication. Fine by me.
I was also fitted with 'bandage' contact lenses to try and keep the moisture in my eyes for longer and prevent them from drying out. These are not bandages (happily), but ordinary contact lenses with no prescription for altering focus. However, my experience with them was short and unsuccessful! On Thursday night one of them came out on the end of my finger as I was gently rubbing my eye and the other had disappeared completely. So on Friday, back we went to Sutton, where we saw a very friendly and no-nonsense sister who said she thought the lenses were probably not the answer, given the irritability of my eyes, and I would be better off just dropping in plenty of lubrication as and when needed. So that's what I'm doing now. My eye problem has not therefore been solved, but at least I can get temporary relief by piling in the drops throughout the day which enables me to see better than if I did nothing. The eyes are still sore and gritty most of the time, but I can see well enough to read crossword clues and short articles in the newspaper. We now have to hope that the ECP blood treatment, which continues fortnightly, starts to have a beneficial effect soon.

And the same goes for my mouth and skin, which are still very dry and itchy respectively. I continue to take drugs for both conditions (without any obvious effect) and apply cream to my skin more or less daily. ECP should make a difference here too in time. Inshallah.

Sometimes you just....

...HAVE to scratch!

And so Life drags on. I no longer feel quite as close to Death's Door as I have in the past (and I'm clearly not) but generally my Quality of Life is still poor, since I am constantly irritated both physically and mentally by these side-effects of GvHD on eyes, skin and mouth, and am also denied most of life's simple pleasures, such as eating, drinking, reading a book and going for a long walk. For the moment, I have to be content with the knowledge that my general condition is much better than it was and is still slowly moving in the right direction. Patience is required. In spades. And as we all know:
Patience is a Virtue,
Virtue is a Grace,
And Grace is a little girl who doesn't wash her face.

Thankfully I am also blessed with the physical, mental and spiritual support of a Gorgeous, Loving and very Long-suffering wife, without whom life would be very miserable indeed and I wouldn't have made it this far anyway. So perk up, Burrows, things could be a lot worse and tomorrow is another day......

Sore throat

Well, the Olympics.
What a show,eh?!
As Simon Barnes wrote in The Times: 'Did that really happen? Or did I dream it?'
And: 'My favourite moment of those 17 days? All of it. It's like a balloon; cut out a piece of it and you haven't got a balloon any more.'
And thanks to Julia (a. getting the tickets and b. pushing me all over the place in the wheelchair), I managed to get to 3 live sessions. Our final visit was an evening of athletics, but although there were no fewer than six medal events that evening, Team GB didn't land a single one, not even a bronze. A shame, but they did magnificently otherwise.

And how about me? A subject of Endless Fascination (yawn).
My mobility is still gradually improving, so the stairs are no longer as daunting an obstacle as they were, although I'm not quote mounting them at Olympic pace yet.
My vision is clearer too, though my eyes spend a lot of time smarting and stinging as if to complain at having to go back to work.
But my skin is still excruciatingly itchy, especially in hot weather and at night, which doesn't do wonders for the quality of my sleep.
And my mouth is still too dry to allow me to eat solid food, so I'm still getting my sustenance overnight through the NG tube.
All these things, and therefore my Quality of Life too, depend on the success of the ECP treatment for which I still make fortnightly trips to St Thomas's and will be for some months yet.

I often think of my Dad, who died at the age I am now, and it is impossible not to draw comparisons between his illness and mine.
He was a little under two months into his 57th year. I am just under three months into mine.
He had a lymphoma in a gland in his neck, a complaint closely related to CLL. Both are caused by malfunctioning lymphocytes.
Like me, his immune system had been knocked for six by drugs and disease, so what finally finished him was a streptococcus infection, or in other words a common-or-garden sore throat.

So I was more alarmed than I might otherwise have been when I woke up a few mornings ago with a sore throat. The GP responded promptly to my call and when he came to see me, happily advised me that there was no sign of any infection and the most likely cause of soreness was irritation from the NG tube. This rang true because I always have difficulty swallowing the few pills I take (most of my medicine is liquid) and they sometimes get lodged between tube and throat lining, which is very uncomfortable until they eventually dissolve and is probably the source of the irritation.

So a False Alarm then.
But it does reveal something about my state of mind.
Call me a Drama Queen, but this bloody malaise has gone on for so long now and the outcome is still so far from certain that I find it impossible to ignore the prospect of an unhappy conclusion.
And on this subject, there was another strange coincidence this week when the blogsite of my old school and university friend Richard Pemberton popped up on my iPad unbidden.
Richard died of cancer earlier this year.
Spooky, huh?!
But not an Omen, I trust.
Maybe he's just looking after me...

Good days and Bad days

Good days, Bad days.

Well, that's life, innit?!

You win some, you lose some.

And other appropriate cliches.

 

Happily at the moment the Good days are much more frequent than the Bad ones and included another outing to the Olympics to watch athletics on Wednesday. No finals or medals, but a great atmosphere and lots of cheering and flag-waving nonetheless.

But Tuesday this week was a Bad day, principally because my NG tube, through which I take all my food and medicine, went on strike late on Monday evening and refused to allow anything to pass up or down it. And of course it was at too late an hour for anyone to come and sort it out for me. I tried pulling, I tried pushing (through a syringe, that is). I tried cold water, warm water and fizzy water. All to no avail. So I had to take my evening medication orally (which at least proved that I could manage it if absolutely necessary) and forgo my usual overnight feed entirely.

 

Hence on Tuesday morning I felt even more feak and weeble than usual, and no doubt prompted by the unexpected change in my feeding routine, Montezuma took his Revenge suddenly and unpleasantly. I summoned the strength to make a few calls to various health professionals for assistance, but happily on Tuesday afternoon, just as I was bracing myself for a visit to A&E at St Thomas's to have the tube replaced (not a particularly enjoyable experience) the current tube declared itself open for business again. So at least the story had a happy ending. I felt much better on Wednesday and Montezuma has withdrawn his attentions again now, so my bowels appear to be back to normal too, thankfully.

 

And just to prove that Life does have a sense of humour, you might like to note the Irony in the name of the unfortunate competitor in the screenshot below who failed to finish her hurdles race in the Olympics. With thanks to my nephew Gulliver for spotting it.

 

 

 

A Busy Week

Over a week since my last update, so high time for another one.

 

And what quickly became apparent while composing this message is how Truly Awful my short-term memory has become. Thanks to a combination of past infections and my continuing drug regime, I could remember very little of what I'd been doing last week and had to ask Julia!  Happily, when reminded of specific events or activities, I did at least manage to dredge up a mental image of each one, so there's clearly something still there in my memory, but the retrieval system is completely messed up. Very frustrating and annoying, particularly because we normally take it so much for granted. If I'm to be able to recall what I've been doing (without asking the long-suffering Julia all the time) I shall have to keep a daily diary. If not hourly.

 

So what HAVE I been doing?!

Well, quite a bit actually, which is a useful indication of continuing recovery.

 

Last Friday after my morning dose of ECP at St Thomas's (see entry for 2nd July if you can't remember what ECP is) we watched the Olympic torch sail past on the very handsome royal barge Gloriana from the riverside terrace at the hospital.

Then on Saturday we spent practically the whole day out at our friends Sue and Steve's, the entertainment including prime position for watching the men's cycling road race whizzing literally past their front door. Blink and you missed it, but we had a great close-up view. We travelled to S&S's by train, something I haven't attempted for 18 months, so that was a notable milestone too.

 

And Sunday was Julia's birthday, so we were out again, though a much shorter trip this time, having a quiet potter round the Chelsea Physic Garden just the other side of the river from us,

and the oldest garden in Europe, having been laid out in 1673, and a calm haven in the centre of London in which to spend a restful hour or two.

 

 

Then most of Monday was spent at the Marsden clinic as usual, so I've packed more into the last 3 days than I've done in the last 3 months. And all after my fortnightly double dose of ECP too.  Tiring? Yes, but no other ill effects so far.

Tomorrow (Thursday) will test my fitness again because we have tickets to the Olympic rowing at Eton Dorney which calls for rather an early start since the sporting action starts at 0930 and we need to be there two hours before that apparently, so we'll have to get up at Sparrowfart.

Bring it on!

 

As for the Medical News, apart from the memory and ECP already mentioned, my overall condition is still gradually improving, so I am a little stronger, more mobile and more with-it mentally than this time last week. The blood test results this week also showed a marked improvement in my liver which is particularly encouraging because that should help clean up the residue of previous infections and prevent any new ones from arising.

 

There are still plenty of physical issues that need resolving, the most irritating being dry eyes and mouth and constant itching, because they have such a significant effect on my Quality of Life, but none of them is life-threatening and the combination of ECP, drugs and liver improvement should start to make a difference soon.

Inshallah, as ever.

Allez, Wiggo!

All hail the incomparable Bradley Wiggins!

First ever British winner of the Tour de France in its 110 year history (99 tours cos of the war years).

And his teammates Chris Froome who came second, and Mark Cavendish, Super Sprinter.

Let's hope they can all recover in time for the Olympics.

British cycling is on a high and the medals are theirs for the taking... 

But enough of jingoism, what about me me me?

Er, nothing much to report actually.

I'm still at home and I'm still improving slowly sloooowly, as ever.

Which is also an apt description of my walking speed.

In fact my condition has improved to the point at which Julia felt she could entrust my overnight care to someone else, in the person of Dixie on this occasion, to whom many thanks are due for stepping in and giving Julia the opportunity to spend an evening and night with her Walking Buddies in Sussex. Dixie and I had a very nice evening together, though with less alcohol consumption than Julia's, I suspect, and happily there were no overnight crises to be dealt with.

Not quite up to a Tour de France yet, but still heading in the right direction.

Out and About

As I gradually recover some strength and energy, Julia and I are able to get out and about a bit more. Nothing too strenuous, except for poor Julia who has to push the wheelchair...

Following our outing to Westminster Abbey on Saturday, we went to look at the magnificent display of the flags of all the world's countries in Regent Street on Sunday.  Very impressed that Julia, who's a bit of a Flag Buff, could recognise almost all of them and attribute them to the correct country.  But then she wouldn't recognise a Carmine Bee-Eater (to pick a random example...) if it sat in her lap, so I guess we all have our own specialities.

Monday is Marsden clinic day, which always takes most of the day, then yesterday we went to see the newly-arrived young otters at the Barnes Wetland Centre and managed to get a very good view of them at feeding time which was a delight.

 And today we made a rather damp excursion to Battersea Park.

So, as you can tell, my energy levels are definitely improving, and it's very good to be able to get out of the house at last and do something other than the daily puzzles in the Times, though I'm still keeping my brain in trim with those as well. Last, but by no means least, it provides some relief for Julia too from the constant grind of meeting the demands of her Moaning Husband.

No news is good news

 

Nothing much to report this week, which is good news.
No crises, no emergencies, no traumas.
Or, in Stanley Holloway's best deadpan Lancastrian accent in his rendition of  'The Lion and Albert':
"There was no wrecks and noobody drownded, 'fact noothin' to laff at at all"
Which is when the trouble started for Albert of course...
But hopefully it's a good sign for me, and not the Lull before another Storm.

I even managed an Extended Outing to Evensong at Westminster Abbey yesterday

with Julia and cousin Eli, for which many thanks are due to Bob and Dixie for organising a wheelchair space for me and for entertaining us all afterwards in their house in Dean's Yard. Bob even threw in a free guided tour of the Abbey after the service. And the choir of course was magnificent. All very spirit-nourishing and memorable.

I'm gradually getting stronger physically and more with-it mentally, although the progress can only be measured week by week rather than daily. But progress there clearly is when I look back a week or two and remember how grim things used to be.

Julia is now encouraging me to try eating some solid food again, so I can wean myself off the NG tube, so we'll see how that goes over the next few days. I hope the recovery process will snowball and therefore accelerate gradually as I take each new step. Inshallah, as ever. We shall see...

Lettuce pray

Just got back from the regular Monday Marsden clinic visit, combined with visit to Sutton Eye hospital (handily next door) for check-up.

And I'm delighted to say that not only are all my blood counts moving in the right direction, but the Eye Doc professed herself v pleased with progress as well. As indeed am I!  Big Improvement in the last few days on the eye front and it's so good to be able to see clearly again, even though they still get tired and irritable towards the end of the day. But then don't we all?

And most of the time I feel a lot less like a Wilted Lettuce than previously.

Not only is this good news for me, but also for poor Julia, who has continued to support me so ably and selflessly through thick and thin, Cos she is a Little Gem (sorry, couldn't resist it). And I say again: I could not have done it without her. She is truly amazing. Here she is making good use of an alternative salad ingredient.




So both today's appointments confirmed what I've been feeling myself recently, namely that I may have Turned a Corner, although I hesitate to tempt Providence by saying so. We shall see, but the signs are all pointing in that direction.
Lettuce hope so...

Wet Wet Wet

What happened to Summer?
Rain, rain and more rain.
Almost as plentiful as the news reports about it:

... wettest June in over 100 years... inundation... massive clean-up operation... what a mess... widespread flooding... mud everywhere... water pouring in...  up to our knees in minutes... Biblical proportions... Emergency Services... overwhelmed... hosepipe ban... blocked drains... abandoned vehicles... rats on streets... media frenzy... hyperbole abounds... blah blah blah...

Not that it has affected me too much yet.
I don't get out a great deal anyway and happily our cellar remains dry to date...

Having said that, I did manage to get out for my first Proper Outing for aaaaaages yesterday. John Graves had very kindly included Julia and me when he bought tickets for an evening game of T20 cricket at the Oval some time ago and at the time I wasn't at all sure I'd be up to it. But it turned out I was!  Hurrah!  Progress!  Had a very good time, much enjoyed the cricket (particularly because Kent won at a canter) and managed to last the whole evening without wilting, Delicate Flower that I am these days.

AND the weather was very fine too...

ECP etc...

Well, another ten days have gone by and I'm still at home.
Hooray!

So far so good, but I'm still very weak and still suffering from dry eyes, mouth and skin (all symptoms of GvHD), so further treatment is necessary,this time in the form of ECP, Extra-Corporeal Photopheresis. Try saying that with your mouth full, or on second thoughts probably better not.

ECP involves taking blood out of the patient (that's me), separating out the white blood cells, exposing them to UVA light and then putting them back again.

The idea is that it restores the balance of T-cells (vital for immune response) in the blood which has been upset by the transplant and GvHD. It's a long-term treatment that means being connected to a machine for several hours on consecutive days every fortnight for something around 9 months. Happily I don't have too many conflicting commitments at the moment....

I had my first dose of ECP on Thursday afternoon and the second on Friday morning. Thursday's was preceded by the insertion of a Hickman line in my jugular vein in the morning to facilitate cycling the blood through the machine.

Not a particularly pleasant procedure, but at least relatively painless (with anaesthetic of course), especially compared with last week's cauterisation trauma. And Dixie very kindly stepped into the breach (which Julia couldn't cover for once), took me to St Thomas's early and stayed until the ECP had begun in the afternoon. Friday's was much quicker and I was back home again only about two and a half hours after leaving, so that's pretty good. I then slept for 15 hours on Friday night, so clearly it took it out of me a bit.

My general weakness is attributable to the long-term use of steroids apparently, so the dose is being gradually reduced week by week with no ill-effects so far. And I can still drag myself up the stairs, so no need for temporary beds or portable loos again yet. Long may that last!

Meanwhile, I'm still on a cocktail of other drugs to prevent various infections or complications from arising, but they seem to be working in that respect, so I have no complaints there.

As for my eyes post-cauterisation, they still need plenty lubrication in the form of various drops and have a way to go to recover fully and allow constant comfortable use. They tire very quickly, so reading for more than a few minutes is still out of the question unfortunately and I have to keep them closed a lot of the time which doesn't make for a very exciting life.

Julia has been and remains a Tower of Strength, Dependability and Love,

despite the fact that this whole ordeal has bee as much of a Trial for her as it has for me, if not more so. She is constantly juggling her responsibilities both at home and at work in order to support me, and any offers of assistance from Friends and Family are always very welcome with both of us, from a Flying Visit to an hour or two spent just Being Here so that Julia can escape the Yoke for a little while.

On the spiritual front too, all that rope-pulling you've been doing

appears to be paying dividends, so please keep it up!

Tear Duct Cauterisation

A Word of Warning before you read this: if by any chance you're about to have your tear ducts cauterised in the near future, Stop Reading Now!
To counter some of the effects of GvHD, ie dry and smarting eyes, I had my tear ducts cauterised on Tuesday.
It was Horrible!
I had been assured that it would be quick and painless and had therefore, or so I am told (tho I can't remember it), turned down the offer of sedation.
Well, it was quick.
And thank Heaven it was, cos it certainly wasn't painless.

First, some anaesthetic eyedrops and a thorough wash of both eyes.
So far, so good.
Then anaesthetic injections in both eyes (two each) which were exCRUciating.

Then the Cauterisation itself, which was not only exTREmely painful (despite all the anaesthetic), but contained elements of my Worst Nightmares about it, including wisps of smoke and the pungent smell of burning flesh. Yes, really!

I was bellowing throughout like a Wounded Buffalo.

And then I heard myself apologising for being such a wimp.
Well, I take it all back!
It was Seriously Painful and my bellows were fully justified.

It was quite scary too, because it was so painful and one's eyes are very precious, so I was a little frightened of permanent damage.

However, it was at least all over in 5-10 minutes and though both eyes are slightly bruised, they were not painful afterwards and have been fine since.

And best of all, they are already showing signs of improvement even though it's still very early days. I was warned that they would take 2-3 weeks to heal fully, so they should continue to improve from here. I can already read a bit without discomfort, even without my specs, and they are much less dry, so need fewer drops daily.

But I'm very glad I took the surgeon's last minute advice to have all four done at the same time, rather than just two, which I had originally decided on, because I won't have to go through that Appalling Pain again!