It’s about quality of life

As hinted at in my previous post, after a couple of nasty infections, my dad’s in his final days.

At the time of writing he’s being made comfortable. He’s not in any pain and he doesn’t really have the strength or inclination to eat or drink, other than a couple of spoons of mashed up weetabix he had yesterday and enough water to keep his mouth and throat from drying up. He barely has the strength to lift his head or even open his eyes.

This doesn’t mean he’s asleep though. I was talking to a doctor by the foot of his hospital bed earlier in the week and I’d mentioned my MS in passing. The doctor had started telling me about a disease modifying drug he’d read about in the BMJ: “Ock… Ockra…”

“Ocrelizumab?” I ventured.

He looked surprised, “Yeah – that’s it.”

Having MS sure makes you do your homework.

For some reason, my dad chose this moment to lift his head and eye us suspiciously; he lifted his right hand like an imaginary gun and shot me twice before nodding back off.

Good old Dad, he’s had a long life, he has never done any harm to anyone  and he still has a sense of humour.

Now, I’ll lay my cards on the table: I’m an atheist. Plenty of people have tried to convince me otherwise: evangelists, jehovah’s witnesses, you name it, but it’s like water off a duck’s back to me now. I’ve considered the evidence and I’d say I was solid in my (non-) belief. It’s not like I can say I wasn’t taken to church as a kid or anything. I’ve done it all. I’m even a Sunday school drop-out.

It comes from having a vicar as a dad.

I lived in vicarages for the duration of my childhood until I was within grasping distance of my teenage years, and then we moved into my gran’s old house and that’s where we settled.

Dad gained a job as the first full-time chaplain in the newly built local hospital, building the role up from scratch.

I don’t meet that many people who remember him in this role as it was a long time ago. The ones that I do, however, always take pains to tell me what a lovely man he was and how he had time for absolutely everyone.

He really found his vocation in life, and made it his mission to keep his finger on the pulse of all the staff as well as the patients.

Whether it was meeting or sharing jokes with the cleaners (or the ‘pink panthers’ as he called them, due to their pink uniforms), the consultants, or the mortician (who memorably tried to get the measure of my dad by inviting him to a post-mortem, expressing surprise that he hadn’t fainted during the experience), he listened to them all, and he let them all unburden their stresses, complaints, fears and sorrows onto his shoulders.

He respected no social hierarchy. We were all human. We were all made equal. We were all loved.

I remember him telling me that he’d been to see a patient who’d listed wicca as their religion. I’d expressed surprise that he’d been to see someone who wasn’t a christian. He put me right – it didn’t matter what your religion or lack of religion was, we all need someone to listen to us and that was why he was there.

When I was diagnosed with MS, I had, and still largely do have, a light-hearted attitude towards the disease and everything it throws at me. I guess it’s my way of dealing with it. No matter how breezily I’d mention anything to do with it to Dad, he’d always take me off-guard by stopping whatever he was doing, removing  his glasses and giving me his full attention.

He was retired medically in the early ’90s. A dodgy ticker wasn’t being helped by the stress of his job. He’d had pressure from management at the tail-end of the Thatcher years. He said they sat in offices away from the rest of the hospital and their main concern seemed to be balancing budgets above all else. He felt that his was a role that had no empirical value in their eyes, though I’m pretty sure one or two of the senior management team sought him out when they eventually needed him.

I also remember that he’d found it especially hard dealing with stillbirths and bereaved parents at a time when he’d become a grandfather for the first time.

Years of happy retirement followed in which he became a devoted grandfather to 6 and, in the last year (to his enormous glee), a great-grandfather. When my mum (who was born into a typical methodist mining family) died 12 years ago, on her encouragement, he ‘crossed the Tiber,’ and joined his friends in the Roman Catholic church. This was a move that eventually and inevitably led to him achieving ordination as a catholic priest, teaming up with an old hospital colleague at a church in a working class suburb of town. He retired for a second time only a handful of years ago.

Despite being a non-believer, my upbringing means I’ve always found it very familiar and easy to talk to clergy. Thinking about his last rites, I’d mentioned to my dad that I was going to talk to a priest, and in a feeble whisper he told me it wasn’t necessary. His short term memory had already been blown to pieces by his recent illness, so I assumed it was similar to him telling me about self administering his own communion after his second retirement, but no – the priesthood had been there already.

“He’s all signed off, the Monsignor came to see him… let me see… ten days ago,” the local Dean informed me at the end of the phone, and then in a beautiful turn-of-phrase that made me choke back the tears, “he’s had his passport stamped, and he’s ready to fly.”

It must be a phrase that my dad is familiar with because when I told him I’d heard his passport was stamped, he managed a smile. Then following the Dean’s advice to give reassurance that it was OK to go, and for him not to worry about who or what he might be leaving behind, I added “when they call your flight number, just go for it Dad, just pick up your bags and go straight to the gate, OK?”

“OK” came the whispered reply.

He’s back in his care home now. The hospital where he’d worked has done everything they can for him, and he’s now being treated by nursing staff who visit daily and the lovely living saint who is his main carer. It’s a surrounding that he’s familiar with, that doesn’t involve beeping equipment, the groans of other patients, the pink panthers with their mops and brushes, or having his blood pressure checked at regular intervals. He can be lulled to sleep again by the night trains on the nearby railway, rattling past to destinations unknown.

The future and the wellbeing of the planet has always seemed to me to be on a knife edge with global warming, the ongoing mass extinction event that is the human race, and now the era of Brexit, Trump and the rise of populism across Europe. Dad’s left such a legacy to be proud of, he has touched so many people’s lives, and we need more people like him. More people to redress the balance of an off-kilter world. More people to heal the human spirit.

It’s about quality of life after all.

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Yes – I was a porker of a baby and I remember that monkey

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Pass the parcel

A week or so ago, I stood at the end of my elderly dad’s hospital bed while he squinted at me and asked “Daddy?”

Just a couple of hours earlier, he’d been rushed from his care home with pneumonia and possible sepsis, and ‘conscious’ moments like this were fleeting and rare. A few days previously, he’d been wide awake, taking several attempts to record a wedding message for my niece. While my eldest daughter held up her iPhone, he amiably stumbled over the details. He managed it more-or-less in the end, with many a chuckle between takes.

I didn’t know either of his parents; both of them had lost their lives in the years before my birth. With my dad’s milky blue eyes struggling to focus on me, I suddenly recalled a photograph from the 1930s of my grandad playing with his son – his only child – in the sand of a Suffolk beach. It felt like he was in the room – a presence handing Dad over in a game of familial pass-the-parcel, saying “Here you go: We brought him into this world, you’re seeing him out.”

Since then, my dad’s rallied a bit. He’s responded well to antibiotics and he’s been moved into a ward with other semi-conscious old men. It’s still early days and he still has a mountain to climb. Whether that climb has an end point that involves falling off a cliff or dozing in front of daytime TV with his care home cohort remains to be seen but the latter’s looking more likely now.

All in all, Dad’s bucked the trend. His parents died in their 60s and he’s overcome a history of high blood pressure, heart problems, and more recently, diabetes and Parkinsons, to come within grasping distance of his 90s.

When he was my age, he was fit and healthy, a former cross country runner, and a fairly active dad with no apparent sign of the health problems to come. Of course, I can see the many parallels between the pair of us already – we both have a compromised neurology after all.

I know any straight comparisons between us will involve lots of negatives for me in terms of balance and mobility, dependence on catheters (a sure fire way to bring microbes on board), a now thankfully distant history of cigarette smoking (including the odd dodgy one), a desk job and the lack of exercise that comes with it, and the timebomb that is antibiotic resistance. I’m not 100% sure how my pescatarian diet and the fact that I have only a dash of semi skimmed in my tea and low fat marg on my toast offsets all that, but it might be high time for me to knuckle down and set about safeguarding my future.

It’s just that right now it’s impossible for me not to imagine a day when I might confuse my daughter for my mum.img065

The brutal brilliance of bladder Botox

I’m away on holiday for a couple of weeks soon and this means taking two boxes of urinary catheters plus an extra box just to cover all eventualities. And that’ll take up a considerable amount of space in the case.

Recent experience bears me out. A couple of years ago, we spent four weeks travelling round Australia. This was an unforgettable experience that involved everything from snorkeling on the barrier reef to cuddling baby kangaroos. The whole holiday was marred only by a kidney infection in the outback (treated) and subsequently running low on catheters in my final week. I was still able to pee at that point, but unable to completely empty, which left me needing the loo more often. In the end, I had to make do by rationing myself to one catheter a day (middle of the night) to leave me enough for the flight home.

Last year things had deteriorated to the point where I was less able to ‘go’. At the end of a week in Spain I had one catheter left for the journey back. I decided to use it before the one hour drive to the airport as I felt the need and I knew I had a few spares in the boot of my car in the car park back home.

Stuck in traffic on the ring road round Barcelona, a text came through from the airline to say our flight would be two hours late leaving. On the one hand, this was good news because we weren’t confident we were going to make it to the airport in time, but it was also bad news for me as I knew I’d need the loo again before take-off. To say I was ‘bursting’ all the way home is the understatement of the year. I don’t think I’ve ever been in so much bladder-related pain.

I recounted all my experiences to my sympathetic MS nurse who laid out the different options. These mostly consisted of different medications to either augment or replace the Solafenacin I was already on.

Of the options presented, there appeared to be only one thing that would do the trick, and a subsequent visit to the urology department sealed it: Botox injections it was.

The theory behind this is you get twenty or so injections into the bladder wall; this causes the relevant muscles to contract and then the bladder can take loads more in terms of volume. The only catch is if you were able to pee by yourself before, you definitely can’t now, so you’re completely reliant on self-catheterisation.  Not a problem for me, of course.

Eventually the day came for my injections. I turned up on time after dropping my youngest off at school and driving the ten miles to big-city hospital. My name was called just as my bum hit the waiting room seat, which at least spared me the torture of the piped local radio.

After a quick, less-than-gentle, wash of the relevant area by what was apparently a sponge on a stick, the procedure itself involved a rod being inserted into the bladder. There’s only one way to get it there folks, but as the rod’s no wider than a regular catheter there’s no real discomfort. It’s wide enough just to enable instruments such as a fibre-optic camera and needle to be passed through.

First, the bladder’s inflated with saline solution so the camera can have a proper look round to make sure everything’s healthy. I had a peek on the monitor above my head to satisfy myself and everything was pleasingly pink with little red veins spidering the walls. Then once the two doctors were happy, handling what appeared to be long thin joysticks, they got to work – one advanced the needle to the next injection spot and the other deployed the Botox.

The injections were as you might expect: they hurt in the same way that dentist’s injections hurt and some more so than others. For some reason – possibly because I have to inject medication everyday into relatively fleshy, relatively pain-free areas – this came as an unpleasant surprise. I was a bit too much of a wimp to watch the procedure on the monitor, opting to grit my teeth and stare at the ceiling instead. I’ll save the joy of that experience for another time, when I’m an old hand.

After about ten injections, they let me know they were halfway through, allowing me to have a breather for a second or two, and then they were off again: 21 injections in all.

And that was it. I was led away to dry myself and get dressed and then my pressing need was to find a loo to empty the saline they’d pumped in.

Apart from me, there were three others in the operating room: two doctors (one female) and a student observer. I didn’t mind, I’ve long since lost any inhibitions about exposing my nether regions to medical staff. I just found it a short, relatively brutal experience. It’s over in ten minutes flat.

I don’t know if it was because it was my first time, but I immediately felt the need to be by myself and ‘lick my wounds’ afterwards. Not easy in a big city hospital with a concourse filled by wheelchairs, visitors, charity stalls, staff waiting for lifts, and people in dressing gowns clutching cigarette packets making a bee line for the exit. I didn’t even feel like sending the promised text to my wife to say that it was all over. I just wanted to shrink into a quiet corner. Even the chocolate I’d promised myself as a reward for being brave tasted flat.

But, boy! What a difference . . . I go to the loo as often as a ‘normal’ person now, four to six times a day, and only once during the night, depending on how tired I am (I’ve even slept through a couple of times). One exceptionally busy day at work, I only realised I hadn’t been to the loo all day when I was halfway home – a total of eight hours. This is a far cry from the bad old days of yo-yoing to the gents and back. I can’t tell you how much this has improved my quality of life. It was totally worth the ten minutes of discomfort.

So how long does the Botox last? I’ve been told it could be anywhere between three and 12 months with most people averaging at six. It’s been four months for me, now, and it still seems to be going strong, so I’m very happy so far. There are no side-effects either – from the Botox or from the medication that I no longer take.

All the better for me to enjoy my forthcoming trip and one more aspect of MS that I won’t be taking with me.

Making lemonade

“To make lemonade out of the lemons life throws at you, you sometimes have to strangle kittens.”

Somebody tweeted that recently. Oh wait!… It was me! I tweeted it!

Why?

Because to aid a restful night’s sleep and to stop myself getting urinary infections, I will now have to self-catheterise every day, at least once a day, for the rest of my life.

Hooray! MS rarely gets sexier than that, eh?

Oh well, something else to put on my health CV.

So what’s happening?

I went to the hospital for my yearly check-up this week. I had to have a bladder scan after my usual neurologist appointment. Despite this, I needed a wee really badly when I finally got to the clinic and I used the loo before I’d even checked in at the desk. I’m sure you won’t mind me saying – it was a nice big wee.

45 minutes of waiting room passed as all sorts of MS patients came and went. Some who looked fitter and healthier than me to those in wheelchairs. MS waiting rooms are funny places. I always sit at the back, so I can look out over the city (the clinic is on the 11th storey of a hospital on top of a
hill). I always feel like I’m being weighed up by the other patients when my name is called and the very slight limp I have and the clumsiness I feel as I circumnavigate all the chairs seems amplified all of a sudden).

After my usual questions with the neurologist I got to see one of the MS nurses. Not my usual one.

He scanned my bladder – I had about 640ml of urine in it. I was just about ready for another wee, so he gave me a bed pan and off I went to the loo again. Again, it felt like a nice satisfyingly big wee. As it trickled to a stop I had a slight residual feeling there was more there but the feeling passed and I couldn’t go any more.

The reveal moment came when he told me that I’d managed to pass 120ml of that original 640ml and sure enough the follow up scan revealed that I had about 500ml of wee still inside me. To put it in context, a bladder can hold up to 1.5 litres, so that pint of wee I’m carrying around everywhere is about a third of a bladderful.

I think I can say I was mildly shocked.

Anyway, treatment options were discussed and we both decided that self catheterisation was the way forward. This will involve passing a thin lubricated tube, about a foot long into my bladder every day, once or twice (or more) a day.

It sounds potentially painful, but to his eternal credit he intimated that he’d tried catheterising himself to see how it felt. Just so that he could talk honestly about it to his patients. I felt completely reassured about it and I’m sort-of looking forward to the nursing team who will visit me in the next
week or two to show me how it’s done.

Actually, I’m not looking forward to it at all, but if it needs to be done, it needs to be done, and I’ll have a follow up appointment with the MS nurses in a month or two to see how I’m getting on.

A lot is said about specialist MS nurses and how great they are, but let me say this… I have received care from my MS nursing team for about five years now and going to see them is like going to see a good friend. Even though I’d only met this nurse for the first time, we had a long chat about music, bands we’re both into, cycling, drumming, vegetarianism, local neighbourhoods I wanted to explore after my visit and so on… He even made me a cup of tea. Despite the white coats and the technical equipment hanging from the walls, I completely forgot I was in a hospital.

I said as much on the online hospital feedback form the next day – credit where it’s due, and all that.

Travelling the ten or so miles into the big city and the usual pains of parking spaces, students and traffic congestion put aside – it’s always a pleasure to visit. Long may it continue to be so.

Three cheers for MS nurses!

Incidentally, I nearly chose “Taking the piss” as the title for this post, but felt that would have been unfair.

More soon…

PS – the shaking I experienced recently, didn’t tick the boxes of a fit, but may have been some residual dream-movement, like I thought.

The eyes of the monster – part 2

Well, I went to see the eye surgeon.

The upshot of my meeting was that I’m not going to have an operation to correct my doublevision. I decided that it wasn’t worth it because I have what he termed a “complex squint” and any correction to my doublevision to the left would be offset by new problems to the right. The surgeon said he could perform the operation if I wanted it and give me single vision looking straight ahead but he couldn’t cure me.

I decided that I would rather stick with what I’m used to and avoid an unpleasant operation with its uncertain aftermath.

There is, of course, the consideration that my eye movements could be affected again by a future relapse and undo everything the surgeon did.

At least I can stare out the monster with my prism lenses. They’re not perfect, but they iron out my straight-ahead vision when I need them to. They have their drawbacks in that they’re not very good with computer screens as they blur the text and they’re not very good with bright light (direct sun or car headlights) as they tend to splinter any brightness into vertical lines.

The extent of my problems as they stand is as follows: I see double from the centre (I hold my head slightly off kilter to make up for this, apparently) and to the left. This gets worse as I look further to the left and I get a little nystagmus (flickering eyes) to the extreme left.

Rather than screw up one eye, I either turn my head or trust the image from my right eye and mentally switch off my left eye image when I look left, which is odd because my left eye is a little bit sharper than my right one..

I see single, slightly off centre to the right and then it doesn’t take long before I get a textbook case of very noticeable nystagmus (surgeon to student yesterday: “take a look and note that for your finals”) coupled with not so extreme doublevision to the extreme right.

When my eyes look up and down in the single vision field, they’re fine and when I look left and right, my eyes travel at slightly different speeds – there’s a little bit of lag in my left eye.

If the truth be known, I have to say the meeting answered a lot of questions and I’m relieved I don’t have to go through all that.

The eyes of the monster

Regular readers may know that I have had doublevision ever since my last big relapse in 2008. Every time I look left I see double. Looking straight ahead I’m fine and looking to the right, results in a textbook case of nystagmus (shaky eyes).

Doublevision is the reason I saw my GP in the first place. It coincided with a lot of other symptoms I was experiencing at the time, but I think if I’d had a severe case of tingly hands and feet or fatigue, I’d have probably let it ride. Doublevision is a more concrete sign that something somewhere is well and truly not right.

Back in 2009, I went to see my local orthoptist at my hometown hospital, to see if I could get some corrective prism lenses. Despite doing various tests all afternoon, and despite the fact that I only wanted lenses for specific situations, I was turned down. Apparently my 20/20 eyesight was too good to ruin with lenses, albeit plain glass ones.

At the time, it affected me more than I had expected because I was very surprised 100 yards or so later down the road to find myself suddenly bursting into tears.

I think this is the one and only time I have ever been truly upset about having MS.

But it’s the helplessness of the situation that does it… Yes it’s being turned down for something small that could considerably improve my quality of life and yes, it’s being patronised by a grinning medic demonstrating how to turn my whole head if I want to look left. But the one thing that really bugs me is that it’s always there and it’s always the same and I’ve had to get used to it whether I like it or not.

Today, I feel slightly different to how I did yesterday. I was more fatigued yesterday, and I was clumsier. My fingertips were more tingly and I had a bit of pain in my legs which I don’t have, so far, today. On the other hand, I have been having some muscle cramps today that I didn’t have yesterday. I find I have to take my MS on a day to day basis. Over time, it’s been more or less the same, but the symptoms ebb and flow subtly all the time.

The doublevision doesn’t do this. There’s been some permanent damage somewhere in my brain stem, so that when I look to the left there’s always the same displacement.

I’m looking directly into the eyes of the monster.

It reminds me how futile it all is and how helpless I am. The doublevision is a constant reminder of how my life has irreversibly changed.

Anyway, moving on two and a half years, I brought the orthoptics experience up with my non-plussed neurologist at our yearly meeting. “Would you like a second opinion?” He asked.

“Oh! Erm… yes please!”

“With our guys or the guys at [your hospital]?”

“Definitely your guys.”

“OK, I’ll write them a letter and we’ll get you seen.”

Four weeks later and I arrived at the eye clinic at Big City Hospital expecting to fight my case. I had drilled myself with the things I wanted to say about how prism lenses would make a difference when driving, or at the supermarket, or in meetings, or watching late night telly, and so on.

My first surprise was that I turned up 20 minutes early and was seen straight away.

The second surprise was the opening gambit from the orthoptist: “OK! Please take a seat. Today we’ll look at your eye movements. We’ll get you to look through some lenses. I’ll take some measurements and we’ll consider some treatment options for you. But today we should get you fitted out with some prism lenses to take away with you.”

Wow!

“Are you sure?” I filled him in on my previous experience including the turning my head to the left demo, how they had made me feel and how I was told it would strain my eyes and so on.”

He just shook his head and smiled in an ‘absolute nonsense’ kind of way. “No, that’s not true, we’ll try you out with some prisms.”

After that we got on like a house on fire. I learnt a bit about eye physiology as I had lens after lens passed in front of my left eye and he explained about the muscles that control my eye movements.

The upshot of it all was that I have some rather lovely NHS specs with prisms on the left lens which improve the doublevision only slightly in terms of the field of single vision, but massively in terms of  everyday practicalities and, perhaps more importantly, morale.

After my appointment, the morning sky looked a brilliant blue, the sun shone off the windows of the hospital towering above me and everything seemed different. I had been listened to and I had the result I wanted without having to battle for it. The world was a better place and again, I felt a little emotional.

That was all about six weeks ago. I have a follow up appointment this Tuesday followed directly by a meeting with an eye surgeon to explore my options (I’m thinking that these options will involve detaching and reconnecting eye muscles). Of course I have a whole raft of questions I need answers to, if I’m to go down that route, but I’ll keep you updated with whatever happens.

I might be staring into the eyes of the monster, but this time it feels like I’m staring it out.

Neuro update

I went to see my new neurologist last month at big city hospital. Like my last neuro, he is another twinkly eyed, amiable bloke. My last neuro- has a vastly increased workload apparently. Either that or he’s too wrapped up in his trials and research (which I have consistently turned down the chance to take part in).

The consultation involved him muttering about registrars not being up to their jobs, simultaneously finding a supposedly missing reflex in my arm and striking through some notes in my file.

I asked him about the permanence of my doublevision in the inevitable Q and A.

It seems that it probably is permanent, but you never know…

Lightning can strike twice in MS, in terms of the parts of the brain it affects. I know this from what I have read online and in literature. This is why you tend to get the same symptoms re-appearing over and over in relapses and the gradual worsening of symptoms over time.

With this in mind, apparently a future relapse could involve the formation of a lesion in a similar part of the brain stem which caused my doublevision in the first place (get this…) cancelling out the first lesion and setting my vision straight again.

That’s something to look forward to, eh?

When I reported back regarding my local orthoptist’s opinions regarding corrective lenses, he seemed skeptical, promising to get a second opinion from the big city hospital opthalmology department.

That was nearly two months ago, now. I still haven’t heard anything.