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.