Falling

You might think it would be fairly hard to fall out of a wheelchair, that for it to happen a person would have to be hit by something large or heavy or fast-moving. Or take a corner too fast. Or maybe misjudge the conditions underwheel.

But I was indoors. Nothing hit me. There wasn’t ice or water or high wind to deal with. I wasn’t moving at speed. In fact I wasn’t moving at all

Sometimes MS just does odd and unexpected things to a person.

Things like the sudden muscle spasm it gave to my legs. One minute I was sitting quite happily in my chair, not doing anything much, and the next my legs had kicked out and I had slid down and out onto the floor.

Now probably my first word should have been an expletive. Actually it was the word ‘baclofen’. Which, in the MS world, is the name of a well-known muscle relaxant and anti-spasm medication.

I hadn’t taken mine. Not because I’d forgotten to take it, which obviously, is easily done, but because I had deliberately cut down on the dosage. A side effect of baclofen is that it can lead to muscle wastage, so the amount you take can be a bit of a juggle. This time I had clearly juggled wrong.

Now in this sort of situation I have learned it’s not worth struggling. I don’t have the wherewithal to manouvre myself up and back to sitting.  I knew I’d need help.

In the past I’ve had one of those pendants with a button you can press to summon assistance. But (maybe it was over-confidence, maybe it was even a nasty case of hubris) I had decided not to pay the monthly pendant fee.

It had to be an ambulance.

So I called 999. Not 111. Ambulance people have told me before that a situation like this definitely counts as an emergency, that even if you don’t feel like your life is in danger, that you are not bleeding uncontrollably or lying there with broken bones akimbo, you do need urgent attention.

The telephone ambulance people asked me what had happened. Was I bleeding? Was I in pain? Then they said they were really busy and they would do their best but it could be a wait of up to six hours.

After an hour I called back. I know there might have been properly dying people out there who needed an ambulance NOW, but it was getting more and more painful on that cold hard floor. All you can do is fight your own corner.

They turned up just before the two hour mark.

And of course they were amazing. Whipped me onto the Manga cushion and up into the wheelchair. A quick check for any cuts and bruises (none to speak of). A quick blood pressure reading (130/75, not bad given the circumstance). And then the interminable form-filling. It’s the bureaucracy that’s the worst of it.

So all in all a far from painless experience, but maybe one to learn from. Baclofen (other muscle relaxants are available) might be more my friend than I thought.

 

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Four Years

That’s four years since my treatment ended. Four years since the last dose of radiotherapy. If I was an alcoholic and not had a drink for that long I would be on my way to having a boxful of medals by now. But no medals for cancer survival. Survival is its own reward.

In Clinic E though they have promised if I get to five years there will at least be a virtual shower of anniversary ticker tape and a blast from the confetti cannon on the glorious day. To be honest it was a half-hearted kind of a promise, and undoubtedly one that had been made by them a few hundred times before. But nevertheless.

It does seem it’s really no big deal, that jump from four years to five. In fact, once you get to even three years without a recurrence with my brand of cancer, your survival is pretty much guaranteed. It’s all about where you fit on a probability curve apparently.

The probability curve for tonsil cancer is fairly forgiving, at least once you’ve got through the early months and years. I could have had it worse.

I’m told I’ve been far from alone in having the odd niggle along the way. I haven’t been the only one with swallowing problems or food sensitivities or even a swollen epiglottis. Even the strange case of my missing uvula has a precedent. Don’t doctors always say there is nothing they haven’t seen?

So it was all quite jolly in the clinic . A bit of reminiscing over how the chemo and the radiotherapy had been, a bit of a trip down memory lane as Mr A took us through a potted history of my throat’s imagery, then the announcement that he wouldn’t want to see me for six months.

Which means that, all going well, I’ll only have two more visits. I was already feeling nostalgic.

And then. Afterwards. You know how sometimes, even though you have heard something, and you know exactly what was said, you ignore it? You put it to the back of your mind?

There was something that niggled at me after I left. Mr A had said, kind of off-handedly, in an ‘it’ll probably never happen’ sort of way, that there was a teeny tiny chance in twenty or so years time the cancer might, just might, flare up again.

Because of the radiotherapy. Apparently the very thing that kills your cancer can bring it back. Radiotherapy. Radiation. The same that did for all those folk in Hiroshima. It’s powerful stuff. I’ve got something to think about for the next couple of decades (assuming, etc). A reason to keep looking for lumps and swellings.

But no, hang on a minute I thought. Let’s not think of tomorrow lest we disappoint today. This is no time for worry and misery. I made a decision. I’m not one for worrying (well not much). I’m four years clear. Today I’m a glass half-full kind of guy.

I’m looking forward to the ticker tape. And the confetti cannon.

 

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Epiglottis Finis

Another trip to the hospital, and it turns out my epiglottis thing is no longer a thing. Mr A had another good look around my throat, saw there had been no change and decided against doing a biopsy. Good news for once.

There is still a bit of swelling, but it’s no worse and nothing to be concerned about. Turns out it might be caused by the new inhaler I’m using for my COPD. In the handy multi-language leaflet that comes with the inhaler it says a side-effect might be nose and throat problems. So there we are, bingo!

And it’s not a one in ten thousand side effect like a collapsed lung or death, but a one in tenner, common as you like, up there with pathetic stuff like dizziness and headaches.

So it was smiles and high fives (though disappointingly only restrained, virtual high fives) all round in Clinic E, and now a four month gap until my next appointment. I’m back in the routine, run of the mill patient queue now. I expect I won’t even get to see Mr A next time.

Next time it will be one of his helpers. Next time it will be a Junior Doctor

And I’ll be there beeping my virtual horn in solidarity with him or her for their brave fight against that nasty Jeremy Hunt the NHS wrecker. Yes there I’ll be, side by side side on the virtual barricades with people who earn 70k a year and get an 11% pay rise.

But things were going smoothly for me. For once I was having a good day at the hospital. So headed to the handy (and obviously very profitable) Costa franchise in out-patient reception for a celebratory coffee and nice cake. Stopped off first at the ambulance people’s desk to let them know I was ready to be taken home.

But the ambulance people weren’t there. And their desk wasn’t there. What was there was an innovation

The hospital had made a change. Apparently this had been to improve the patient experience. When I hear that, my own experience of such things says there might be trouble ahead.

And guess what?

The innovation has made things worse.

A new Patient Waiting Area has been created. Which is a distance away from the Outpatients reception and the nice Costa franchise. In fact it’s tucked away ’round the back’. A long way ’round the back’.

But there is at least free coffee, and biscuits. It would be a bit churlish to complain that it’s cheap coffee served in those burny plastic cups. And it might be churlish to complain that it’s furnished like a badly furnished doctor’s waiting room.

Well call me a churl, but the truth is it’s all a bit shit. The waiting area has been created by faceless NHS bureaucrats who don’t have to spend time sitting around waiting for ambulance transport.

The waiting area is in the wrong place. It looks shoddy, cheap and unwelcoming. Even the biscuits are rubbish. And the thing will probably be hailed as a great success.

That’s if it lasts. I’ll see what it’s still there four months from now.

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Sufferer

I like the word sufferer. There’s a ring to it, and a kind of epic fall quality which is easy on the ear. It’s a gentle word, but one with a dignified air. I like sufferer

But I don’t want to be called a sufferer. If I feel like I’m suffering I might tell you. But I might not. I don’t want to be called a sufferer, and I particularly don’t want to be called an MS sufferer.

I’m a person who has MS. And quite honestly it’s up to me to decide whether I feel like I’m suffering with it. Sometimes I do feel like I’m suffering. Sometimes I really properly feel that way.

But sometimes I don’t. And actually I think it’s up to me to decide how I feel.

It’s no surprise though why people say it. Because they repeat what they hear or read.

The phrase ‘MS Sufferer’ is an example of what gets called lazy journalism. It’s a cliche, the use of which is of course itself a bit lazy. My using it doesn’t make things any better, but then I’m not claiming to be a journalist.

Of course some of the cliches really do work. I always smile when I see the word tot used to describe a small child. And then there are all those things which appear in the press but don’t get said in real life, such as love nest, love rat, sex romp. You get the picture.

But hearing about MS Sufferers does get annoying. ‘Cancer sufferer’ is much the same, though less common and maybe more forgivable, given that cancer is more obviously horrid. ‘COPD sufferer’ is a rarity, and anyway hardly anyone knows what COPD stands for.

I don’t mind ‘MSer’ as a way of identifying us, but that’s a bit gimmicky and really I prefer just ‘person with MS’ if I have to have a label. Not quite as sexy as the S word perhaps, it certainly sounds a bit bland, a bit nothing even, but it’s honest at least, it says it like it is. It says I am what I am. No airs and graces.

‘MS Sufferer’ annoys me though. It gets my goat. But I’ve recently had a bit of a moment. I’ve realised that even though I’ve banged on about it for ages, the banging on has done me not much good. For one thing, little has changed. ‘MS Sufferer’ is still everywhere, in almost every article you read about MS. But for me it has become something else. It’s become a hobbyhorse.

And hobbyhorses can be dangerous. They can take over your life. They can take you places you don’t want to go and turn you into people you don’t want to be.

You only have to read Tristram Shandy (and if you haven’t I’d recommend you do, it’s a belter) to know what I mean. I don’t want to end up spending what’s left of my little life turning the back garden into a scale model of the Battle of the Somme.

So from now on I’m going to do my best to embrace my inner sufferer. I’ll try not to bat an eyelid when I hear that phrase, I might even use it myself. Occasionally.

But PS, I have one or two more goat-getter turns of phrase. What about that ‘what doesn’t kill you makes you stronger’ line? Much as I might admire old Nietsche, that’s just plain wrong. Then there’s ‘but you look so well!’ and all those other platitudes people grasp onto when they don’t know how to respond to seeing illness or disability.

The most annoying trope though is all the talk of people who are ‘fighting cancer’ or having ‘a brave battle’ against it. The truth is that no one who has cancer is doing any battling or fighting. Where we are is not a war zone. Actually it’s much more as if we’ve been caught out in a really bad storm.

The wind is howling and the rain is lashing down. We have to make shelter. We need help from people who can put together a safe refuge to see us through.

My own refuge maker is good old Mr A. Me and my epiglottis have an appointment with him next month. He’s someone who knows a sufferer when he sees one.

 

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MS, Epiglottis, George Washington

Relapse or no relapse, there was not much I could do. After the MS nurse said tough it out, wait and see, I did just that. I put up with feeling a bit shitty, like she said. And after five days of not being able to feel or use my hands and fingers as I should, not being able to cut up even a fish finger, I woke up and found I was (just about) able to hold a knife and fork again.

I was what seemed like suddenly back to where I’d been before the relapse. Or not relapse. And as seems to be the way with these ‘miraculous’ recoveries, I couldn’t actually recall how it had felt when things had not been working correctly. There must be a name for that. Some sort of Effect. Some sort of Syndrome. It’s as if the brain doesn’t want you to remember the awfulness of what just happened.

It’s been like it before. In the old days when I had relapsing/remitting MS, I did at various times lose feeling down my right side. I’ve had cartoon-like double vision. I’ve had the sensation of looking at the world through an out of focus lens that is called optic neuritis. And in each case I recovered. And straightaway forgot how the trauma felt. But that’s the way it is with RRMS.

With RRMS there is a relapse, then there might be a remission. And that cycle repeats. But with every remission there comes an ever-increasing level of residual disability. Usually.

Because everyone’s MS is different. One person’s relapse might last for a short time and lead to a complete recovery. The next person might have a relapse that lasts weeks or months and they never properly get better from it. And no one seems to be able to predict which way things are going to turn out.

Then when RRMS becomes SP (secondary progressive) MS, as the textbooks say it almost always does, there are not supposed to be relapses anymore. Except you can have something called relapsing SPMS where there are relapses. Confusing, isn’t it?

But whatever, Wednesday came around and I had to shake off my confusion and switch attention from one chronic illness to another. MS one day, cancer the next. I skipped past COPD like it wasn’t there at all. I had an appointment with Mr A and  Clinic E to get to. An appointment with that camera on the end of the tube that goes up my nose and down my throat.

Mr A had his video screen back. And I could crane my neck just enough to see the lens-eye view. He said have a look, there it is. And there it was, that flappy bit of gristle we all have. My epiglottis didn’t seem much different, as far as I could see.

But Mr A is the one with the experienced eye. He said the swelling had come down. A bit. He said what do you think. I thought what do I know but asked him do we need to do anything, allowing us the illusion that I had some sort of control. I really didn’t want to go through that biopsy palaver again.

It would have involved a general anaesthetic and probably an overnight stay in hospital, with all the logistical hassle that comes with it.

Now Mr A has seemed quite happy to start wielding the knife on me at the drop of a hat in the past, but this time he rather changed his tune. He said he thought we (meaning he) should wait. He thought the swelling would subside some more. No need to do a biopsy. Not yet.

So an appointment in two months time. Two months of trying not to fret. Of trying not to do too much looking up of ‘epiglottis’ on google. And certainly not ‘epiglottic cancer’, which is, as they annoyingly say, a thing,

But you can learn interesting things from google searches. Like for instance, without all this I would never have known that George Washington, first president of the USA, died from a sudden and nasty bout of epiglottitis.

Epiglottitis is a severe and painful inflammation. Which is plainly what I haven’t got. Along with wooden teeth which, contrary to persistent rumour, George didn’t have. He was apparently a martyr to his dentures though. His ill-fitting, ivory dentures.

I will be receiving a new appointment to see Mr A in February.

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Epiglottis and A Great Big Fob

A routine check-up back at Clinic E. Not with Mister A this time but one of his nice assistants. A nice assistant who introduced herself as ‘one of the doctors’, a phrase I’ve heard before both in real life and on the telly. It’s a comforting phrase. It’s good to know they’re part of the gang.

I hadn’t met this doctor before. She said she had just rotated. I nodded. She said she was enjoying it so far. I wondered where it fitted in. How did a stint in ENT rank in the scheme of things? I’d guess it was fairly low to middling. Maybe worse than spending time in plastic surgery but definitely better than a month in stoma care. Or the diabetic foot clinic.

The nice doctor may have been new but she knew the drill and soon had that familiar camera on the end of the familiar tube going up my nose and down my throat. There was no screen for her to look at the view on (only Mr A gets that perk). She had to make do with a sort of scope thingy.

After a minute or two she said she wanted to get someone else to take a look. I said is something not right. She said she’d just get someone else to take a look.

I instantly wanted to know how many months I might have left to live.

She left the room and came back in after what seemed like a couple of hours with Mr A in tow.

Let me have a look then, he said. And he took over the scope thingy.It didn’t take him long to work out what was what.

It’s a cyst. A cyst on your epiglottis.

Now the epiglottis, as every schoolboy knows, is a little bit of gristle that goes across the top of the windpipe when we swallow. It stops stuff going down the wrong way.

Mr A said it’s away from the site of your tonsil cancer. Meaning the cyst. It will be benign. They’re always benign. He said he’d seen loads of them. So no need for a biopsy. Then I was waiting for and I heard a but.

Mr A said but I’ll bring you back to clinic in a month to check it hasn’t grown. And if by some freakish chance it has grown? He said we’ll see. And he gave me what I’m sure he meant as a reassuring touch on the shoulder.

It didn’t stop me looking up treatment options and survival rates for epiglottal cancer on the way home, but it was reassuring. It really was.

The thing is I’m a worrier. He probably knows me well enough by now to realise that before I’d left the clinic I’d be already fretting about the probably benign cyst. And he probably wouldn’t be too shocked to learn that the next day I woke up with all the symptoms of an MS relapse. Clearly stress-related.

Now it’s often hard to describe MS symptoms in ways which do them justice without straying far into the realms of hyperbole and wacky metaphor. So in this case let’s just say I couldn’t move my hands properly.

Which doesn’t sound too bad, does it? Well, overnight I’d found myself suddenly unable to grip or feel with my fingers. Not totally, but power and sensation was much reduced. I couldn’t pick up a cup. I could barely use a knife and fork. So bad I needed a runner for Scrabble.

I also had what I initially thought might be a developing case of flu. A splitting headache,  a kind of painful ague in my shoulders/arms, and a kind of other-worldly brain fog. A fog where the world is experienced at a remove, like being off your face but sober.

A stroke maybe? I’ve got MS. I knew it wasn’t a stroke I was experiencing. It was a relapse.

I phoned my GP who agreed with me that on the face of it steroids might be a good idea but referred me to the MS nurse. She said I had secondary progressive MS and with that you don’t get relapses. I said I know a  relapse when I see one.

I checked the MS Society website. There is definitely a thing called relapsing SP MS. I phoned the MS nurse back. She said the consultants don’t like giving out steroids to people with SP MS. She said I was just having a shitty time, what with the cyst and everything.

She was right about that.

She said try to tough it out. See how you feel in a couple of days.

I felt like she was trying to off me with a great big fob.

 

 

 

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I Lost My Uvula

The uvula is that dangly thing at the back of the throat. It’s lovely, but its only purpose seems to be to promote an unpleasant gag reflex when touched. In latin, uvula means ‘little grape’, which at least goes to show that the Romans not only gave us nice mosiacs and underfloor heating, they also knew how to make words sing. They had soul.

I think Mr A has soul too, in his way.

I had gone along to Clinic E to see him for my regular cancer check-up, now 34 months after treatment ended. Nearly three years gone, and only two or so to go before the all clear. We went through the familiar procedure of sliding that tube with a camera on the end up my nose and down my throat. I was used to it by now, and as always it wasn’t painful, just a bit discomforting.

It’s routine for him. He must have done it hundreds of times, and however caring he is he must be fed up with people flinching and saying oh no, not that, when he knows it’s nothing to fret about.

As I say, I’m used to it. No fretting here. And certainly no gagging on the tube with the camera on the end. Never had been one to gag. Which maybe, now that we know what we know, should have set the alarm bells ringing  a bit earlier.

Because when he’d had a look around my throat with the camera and said it all looked ok, he said except there is no uvula. He asked me where had it gone? I asked him, all naive, what is a uvula? He explained, and started looking through all the old snapshots he had taken over the months and years of the inside of my mouth and throat. Still no sign of a little grape.

Mr A said I could get along just fine without one, nothing to worry about. But what had happened to it? Might I have not have had one in the first place? Highly unlikely. I mentioned the gagging, or rather the not gagging.  He said I would have had one, the radiotherapy might have done for it.

I said how could I not have noticed? And what else might have gone missing? He said (just like Toyah said) it’s a mystery. But it isn’t coming back.

He finished with the camera and pulled it back and out of my nose. The nurse gave me a tissue. Then Mr A ran his fingers round my neck, feeling for suspicious lumps. Nothing. Confirmation there was no return of cancer, which, obviously, was good news.

He extended the time gap for my next appointment to four months and said a cheery goodbye. He wasn’t making a fuss over my missing little grape and didn’t think I should either.

I wasn’t too sure though. I felt a tiny bit sad. I tried to remember if I had ever gagged on anything. I’m still trying. I think I know what it feels like, but is that just my imagination? Is it like that tree falling in the wilderness and no one knowing whether it makes a noise or not?

One thing was a relief. I’d thought the uvula was essential for yodelling. But no, it turns out I could still do a Frank Ifield or a Focus impression. Surely you remember ‘Hocus Pocus’ by Focus?

 

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