Six Months Away

I got a couple of pressure sores. Bad ones. One on my sacrum and one on my coccyx. Actually I got a couple of actual pains in the arse. And because of my reduced sensation I didn’t notice quite how bad they had got until suddenly, and despite having district nurses call on me regularly to dress them, they became really bad. The sores got all infected and I got all delirious and incapable and ended up in hospital having intravenous antibiotics. And what seemed like endless blood tests. I stayed in hospital for a month, bad food and all. I didn’t sleep much.

The hospital take pressure sores seriously. They take them seriously because the hospital get fined if patients develop sores on the wards. So I got lots of attention and met people from a department called Tissue Viability. The Tissue Viability people had the air of a crack team, an elite unit. They used fancy words like exudate and granulation. They used something clever called Flaminol and they used Manuca honey dressings which have miracle-working properties and they packed the sores with something even more clever than Flaminol and Manuca honey made from seaweed.

It all worked well enough for me to be declared medically fit and ready to leave. I was saved from becoming that modern pariah, the bed blocker.

But they wouldn’t let me go home. Instead I got farmed out to a nursing home for six months while the home’s pressure sore whisperers carried on the job of slowly and eventually getting rid of the sores. Now pressure sores are stubborn and don’t want to be got rid of. You have to stick with them because they definitely stick with you. The whisperers were stickers.

Six months is a long time, especially when you spend most of the time flat on your back in bed as I did. Not only flat out but being turned every three hours through the day and night. Propped up by a pillow under alternate buttocks.

The sleep deprivation wasn’t good but the food was better. Not great, but better. More like school dinner than hospital dinner. So lots of meat and two veg, and lots of puddings. Spotted dick, semolina, even tapioca. No gypsy tart though. Amazingly I did start to put on weight. The home was well run and the staff were professional, caring and friendly. It was alright. In fact it was so alright that I might have got a bit institutionalised.

I got used to being fed watered and toileted. Everything was done for me, and that was lovely. But after a while it felt just a bit too lovely. Not good to lose control like that.

I got bored. I watched too much bad tv, I looked aimlessly out of the window for too long. The pressure sore healing was taking too long. Everything was taking too long.

But at last the healing did work and the sores closed up. They let me out and I was home, with a new regime to cope with. Carers from a care agency and an overhead hoist to raise me in and out of bed. But best of all a different view from a different room.

Oh and I wrote some verse while I was away. Six months having nursing care and all I got was a lousy haiku triptych. Here it is,

 

RESIDENT

driven to certainty

yet between the soft covers

a glimpse of sunset

 

a lot of padding

along the dark corridors

a simple bright word

 

superstition but

sometimes even augury birds

don’t leave their cages

 

 

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Biopsy Results

When Keats wrote the marvellous poem ‘When I Have Fears That I Shall Cease To Be’ for all his poeticalness he wasn’t so much having intimations of mortality as wondering where his next shag was coming from.

While waiting for the results of the tests on my stubbornly painful throat my own thoughts have been no less prosaic, and the nearest they came to joining in the mortality debate was to wonder whether I’d be living long enough to see ITFC win another trophy. Now I’m a glass half full type but I have to say my conclusion had been.

Recovering slowly from the biopsy experience, which had involved a generaI anaesthetic and an awake all night stay in what seemed like the dementia ward, I waited for the promised letter from the hospital inviting me in to hear the results. They said expect to hear in two to three weeks. The pain caused by having chunks excised from all around my soft palette gradually lessened until I found myself back with just the same old painful swallow.

They’d said not to read anything into the wording in the letter, which would be the same whatever the biopsy result was.

But I didn’t have to wait for the letter. I had a phone call telling me there wasn’t any cancer. But they didn’t know what the problem with my swallowing was. I got another appointment.

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When I Have Fears That I May Cease To Be

It’s been a while.

It’s been a while because everything has or had been going smoothly. For months I had been having regular checks and they had regularly been ok. I was just waiting for five years to pass and then I’d get the cancer all-clear and it would be big cheers, party poppers and champagne all round.

But then I got a cough. A cough that wouldn’t go away. A cough that you would have to call persistent. In the terrifying TV persistent cough adverts we’re told it can be lung cancer. So in my head I already had lung cancer. Or if not that then at least mesothelioma (that invariably fatal one where you have bits of asbestos stuck in your lungs).

I thought here we go again.

I thought a lot of things. I thought oh no, I thought why me, I thought FUCK! I thought all sorts. And then I thought I’d better get to my GP.

He said it might be a chest infection and put me on antibiotics.

Which didn’t work. He then put me on different antibiotics which didn’t work either but did manage to give me a dose of oral thrush.

So then I got sent for a chest X-Ray. Knowing she wouldn’t want to give too much away, I asked the radiographer if I was likely to be called back quickly. She said as far as she could tell no but don’t quote her on it etc.

Which sounded like good news.

And a week later my GP confirmed it.  He said there would need to be other tests but it was more than likely I had COPD. Which was not quite so good news.

COPD is Chronic Obstructive Pulmonary Disease, the most common form of which is emphysema, the most common cause of which is smoking. Now these days I hate smoking. But I did smoke for a few years in my youth when I was living forever.  I gave up on May 9th 1984. Nearly thirty years ago.

And not only did I give up smoking, but I then gave my lungs a good airing for at least ten years while I went on a several thousand mile run. It seems that didn’t work. Apparently it’s just bad luck.

And growing up in a pub probably didn’t help, what with all the passive smoking.

The GP gave me an appointment. I had to do a test. Something called a spirometer test. I first off thought this was something to do with a spirograph, that educational toy thing which looked like it was going to be so much more fun than it actually was.

But it turns out the spirometer test involves breathing explosively into a plastic tube, then breathing in from an inhaler then resting for twenty minutes before breathing explosively again. Believe me, it’s harder than it sounds.

I went back to my GP for the results. He said they were good. He had a smile on his face. He said I only had mild COPD. Fair enough.

Then he said the damage there was could not be repaired. It was all about preventing things getting worse. I said how do I do that? He said it’s good you’ve given up smoking. And he wrote me a prescription for inhalers (like the ones asthmatics use except mine have to be special breath-activated ones because I can’t use my hands due to MS).

Now I like this GP. He’s the one who spotted my dodgy tonsil. You could say he saved my life. But I’m not sure my having only mild COPD is something to get all smiley about.

Then again, it could be worse. A lot worse. Cancer, Mesothelioma, TB, at least it wasn’t one of them.

And talking about TB, the line at the top is by John Keats. And if anything about this whole incident is going to get me smiling it’s the knowledge that I can now add lung disease to the list of things old Bright Star and me share.

The other things are growing up in a pub. And being on the short side.

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Putting On Weight

After the weigh-in on my latest trip to Clinic E I found myself sat waiting for new money kilos to be converted into some old money pounds and ounces I could understand. I was fearing the worst and expecting a familiar dressing down from the diet police, but unexpectedly I found myself facing smiles rather than thin lips.

I’d actually managed to put on a whole seven pounds since I was last weighed. I’m now eight stone ten. My cream cake and Chelsea bun diet seems to be paying off. There’s a way to go before I can call myself a normal weight but at least I’m going in the right direction.

My BMI is now 18.9, which turns out to be a way short of the UK average (26.9) and even a bit off the Ethiopans (19.3)  a people not known for their hoarding of fat. But I’m on a roll, I’m coming after them.

So I’m still on two of the protein drinks a day, though there’s talk of cutting those down/off if progress continues. There’s no doubt I’m able to eat more and more often these days, though it’s still a bit of a struggle at times. My appetite, though better, is still a way off what it was.

And because my saliva production is poor there are some foods I have problems eating; dry stuff like bread and, infuriatingly, chicken. Now these days eating the occasional chicken body part is as far up the evolutionary scale as I’m prepared to go for protein, so it’s been particularly infuriating to find myself chewing and chewing, trying to get each forkful into a swallowable condition.

When the dietitians said try chicken thighs and since then I have and it’s worked, it’s been pretty much a time for singing and dancing.

I’m getting well used to Clinic E, and it seems the feeling is becoming mutual. These days the nurses say hello Mark when they see me. Now this is all very cheerful and matey, though I can’t help sensing the bonhomie is only a step away from their thinking ‘oh here he is again’.

This time I was ushered in to see Mr A for what has become my regular examination, only to find yet again it wasn’t him I would be seeing. He apparently had more serious patients to see.

Well that’s probably fair enough, I know what they mean. But it is slightly off-putting to be termed non-serious, as if I’m somehow not pulling my weight and need to pull my finger out. Don’t these people know how hard it was to put those seven pounds on? Ethiopians aren’t easy to beat.

I must have looked a little disappointed because the day’s doctor was at pains to tell me that he knew what he was doing, had done it lots of times before, had all the qualifications. In fact I was beginning to think he was protesting a little too much. But I thought well I know the drill, if he needs any help I can probably nudge him along.

Of course he was brilliant. He managed to combine friendliness with professional efficiency in a way that made trusting him easy.

He was a bit let down by his equipment though. It turns out Mr A holds onto all the hi-tec stuff. His assistant has to do things manually. So it was back to how it must have been done in the old days. There was no screen to view the images from inside my throat on. The doctor just had a hand-held viewer attached to the camera, which was at the end of the same old tube that he stuck up my nose.

But maybe the old ways are the best. After feeling around my neck for lumps and saying everything looked fine, the doctor hit paydirt. He found that part of the base of my tongue had fused to the side of my mouth as a result of the radiotherapy. Not easy to spot, and something the student nurse he implored to get close and take a good look struggled to pick out.

But it did explain why that area remained sensitive. Nothing to be concerned about though.

I was sent away with another appointment, and with a homework assignment. I have a minimum of another seven pounds to put on before I can think about beating the Ethiopians.

 

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One Year On

It’s been a while. In fact it’s now been a year since I went to my GP and said I’ve got this lump, pointing to my neck. As they say round here, it’s been a helluva year.

It feels like the worst is over, though my cautious self tells me not to be complacent. These regular check-ups happen for a reason. And one time when that camera on a stick emerges from my nostril there might be a silent moment from Mr A and he might say something about a curiousity or suspicious architecture or some such flannel. And the ordeal might start again.

So I don’t want to tempt fate. However, nearly eight months after my treatment stopped I have a long list of stuff that hasn’t happened for a while. I haven’t had a needle stuck into my arm for ages; no blood tests, no canulas, no sitting for hours with a bottle of chemo dripping away.

I don’t have to get into an ambulance every day and spend hours at the hospital. I don’t have to sit around waiting to be called, I don’t have to get hoisted up onto the radiotherapy slab, and I don’t have to listen to The Proclaimers.

It’s been a while since I was with a bunch of men who have prostate cancer, watching them sitting round drinking their pints of water before treatment, a while since I had a sleepover on that cancer ward, and a while since I saw someone die in front of me.

Reading back over this blog, I’m reminded there have been some pretty ghastly moments. I realise I’ve forgotten some of those moments, and maybe that’s no bad thing. Some of the horribleness is probably best left behind.

 

As I’ve said before, it hasn’t been so much as fighting a battle as enduring a sustained period of really bad weather. That I’ve been stoical and managed to put up with everything hasn’t really surprised me. Having MS is good preparation, I’ve had years of endurance.

One thing about MS though is that you’re often not believed. If you say you’ve got a symptom, say pins and needles, or you’re feeling whacked because it’s humid, you tell people and they’ll say oh yes, I get that, awful isn’t it? And you say yes but it’s worse with MS and the people nod, but they don’t believe you, not really. They’re thinking how can it be worse? And pins and needles, that’s nothing, isn’t it?

Maybe that’s being harsh but the truth is, however sympathetic a listener is, only another person with MS (even though no two of we MSers are the same) can understand the reality. The encompassing reality.

But I’m starting to steer away from my point. Which is that I found myself facing a bit of cancer unbelief that was very familiar.

I had a drink. In fact I had my first alcoholic drink of the year on 25th December. I’d talked it over with the dietitians first; they said if you want wine then white would be best, or a light red. I thought a Beaujolais, as it was the nouveau season. They said water it down if it helps, and don’t open an expensive bottle, just in case.

So in the spirit of the festive season I went for a bargain glass of Tesco’s (highly rated) vintage champagne. Which proved to be my mistake. And it was my mistake. No one made me do it. No one had even suggested it as an option. Call it over-confidence. Call it stupidity.

Over the next few hours my mouth became more and more painful. It was like the pain I had with that mouthwash, the one the nurse likened to battery acid. It did diminish, but only slowly. It was New Year before I was fully back to where I started.

And when I told the dietitians about this, I got sympathy, but I could tell they were thinking champagne pain? That’s nothing isn’t it? They said the pain shouldn’t have lasted that long. They implied, gently but definitely, that I was building the champagne pain into something bigger than it deserved. I was deluding myself.

It was a familiar kind of moment. Right then I wanted those dietitians to be me a fortnight before. I wanted them to drink that champagne and feel that pain, and I wanted them to keep on feeling it like I had. Then they’d know.

But of course that wasn’t going to happen.

They did tell me to avoid carbonated drinks for a while. Funnily enough I think I’d worked that out for myself.

 

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Three-Monthly Review

On Friday afternoonI returned to Clinic E. I wheeled my way along the seemingly never-ending corridor, past the hordes waiting to be seen at Clinics A, B, C, D, then up to the familiar reception desk at familiar old Clinic E. Where the nice receptionist was all smiles and welcomes.

And I settled myself down to wait in my usual place, by the end of a row of seats, easy for a quick dash into the consulting room. And I waited. And waited.

Now to be fair I was a bit early. And I’ve hung around for longer. But hanging around is hanging around. I was wishing they’d just stick to appointment times. Then I told myself to be patient, it’s a hospital, they don’t know how long it’s going to take to deal with patients.

Then a nice nurse came up an apologised. She said sorry for the delay, the morning clinic ran over, things are a bit late. She said things were about half an hour late. And she was right. Thirty eight minutes after my appointment time, the nice nurse came back and said Mister A is ready for you now.

I’d been expecting some or all of the multi-disciplinary team to be there like before, but there was only Mister A. No team, no  dietitian, not even a student. Mister A said you (meaning me) are an easy patient and as we are so busy….

Then just like last time he put the tube with a camera on the end up my nose and pushed it in. He said turn your head and look at the screen, and for the first time I could see what the camera saw. I asked Mister A what was I looking at, and he took me on a tour of my mouth and throat and the place where my left tonsil used to be. There everything was, my epiglotus, the (surprisingly narrow) entrance to my oesophagus, it was a bit like a moving picture Reader’s Digest. Mister A said everything looked ok, then pulled the camera cord out

Then he examined my neck and that was that. All clear after three months.

He gave me the timetable for future check-ups. Every six weeks for eighteen months, then every three months, then every six months, then every year. So I’ll be coming back to Clinic E for a while.

On my way back to reception to get a date for my next appointment the nice nurse smiled again and handed me a Patient Satisfaction Survey. All the friendliness suddenly made sense. Staff appraisal ratings might depend on my response. No wonder they’d all been smiling.

But fair enough. I filled the survey in. Actually I did it online, which was helpful for those of us who can’t do handwriting too well. And I was pretty complimentary to be honest, apart from the thirty eight minutes, obviously.

I hope the appraisals went well.

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Recovery Continues

More good news this week. My RIG got taken out. After three months of having to put up with a length of plastic tubing sticking out of my abdomen, I got called in to Clinic D at the hospital where a nurse I’d met back in radiotherapy leant over my wheelchair, deflated the balloon in my stomach and all in a trice yanked the tube free.

To be honest it felt a bit like being punched in the guts. The nurse said it was only my stomach going into spasm, just relax. I tried, and as promised, the feeling passed. She dressed the wound, I thanked her, and I was out of there licketysplit.

And I’m now, to my considerable relief, able to sleep on my side, not all the time on my back as I’ve had to since May. The wound looks a bit odd. Apart from the dried blood, most of all it seems now almost as if I’ve got two navels. Which, if it stays that way, will be odd. But also, the dressing keeps falling off. My new navel seems to be in a place where sticky things won’t stick.

The nurses come round twice a week though, bustling about in their Hattie Jacques way, cleaning and dressing and tidying things up, including my rapidly healing wound. I try to get them to share horror stories of other patients they’ve seen, but unfortunately, despite my saying they’re welcome to tell anyone anything about me, they all seem to stick to their infuriating confidentiality policy.

But I’ve also been back to the dietitians, who weighed me and found I’d lost a couple of kilos. So I’m not far off eight and a half stone now, and it’s a long time since I was that light. However, and as I was at pains to tell the diet police, I am beginning to eat more. It’s been a battle to actually get through three meals a day, but in the last week, maybe inspired by the sight of Michael Phelps’ gigantic breakfasts, I’ve managed it on a majority of days. Even though portion sizes may not have been great, and certainly not as great  as Michael’s.

They did come up with some helpful advice though. Like trying Weetabix with extra milk for breakfast, having moist fillings such as tuna and mayo for lunch on lightly toasted bread with the crusts cut off, and tinned fruit with custard for afters. Then they said why not add marscapone to tomato based sauces to take the astringency away, and give extra moist scrambled eggs with smoked salmon a go. So I’m doing all those things, as well as throwing myself into rice noodles, quorn, avocado, white sauces with extra herbs.

I must have been getting a bit over-excited. But then they told me I could get worse again before I really get better. Apparently it’s qute common for things to be going swimingly and then you can get a big setback, with a return of some of the worst symptoms. Well all I can do is hope that doesn’t happen. But at least I should be prepared if it does.

Now, I have to say I’ve been very encouraged by responses to this blog. Firstly by the volume of views (now well over 800) but also by the nice comments people have made. And then there are the gifts of ‘soft’ food, which  have been much appreciated. Less welcome have been the offers of Proclaimers CDs.

Hopefully the worst is well over now. I’m aware I have a way to go in terms of stamina and fitness; I’m  still sleeping a lot and I do feel weak at times. Then there’s my stubble growth. anywhere near to where the radiotherapy beam went doesn’t seem to want to sprout, so I only get bristles above and below the lips, oh and fortunately where the Bradleys are.

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