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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Feeling the heat

Well, last week was a scorcher.

So much so, that I gave up on Fathers’ Day activities halfway through the afternoon and went to bed for a bit. The following day, I dressed for work, drove my youngest to school, and then turned round and headed back home I felt so rough.

Again, I had an hour’s kip during the afternoon. After this I felt brave enough to step outside into our south-facing garden with some crazy idea about hanging out some washing.

Stepping out of the back door, I felt sure, was pretty similar to stepping off an aircraft in Saudi Arabia.

I turned round and went back in.

I felt so fatigued, dizzy and achey that I even Googled to see if I’d given myself cyanide poisoning. I’d made elderflower cordial, and elderflower and gooseberry jam a day or two previously and the stems apparently contain cyanide (in the same sort of way that apple pips do).

To a paranoid, heat-addled, MS-scarred brain like mine, it’s pretty amazing how similar the symptoms of MS and elderflower-induced cyanide poisoning are.

Tuesday, I was pretty much right as rain, so I ventured back to the office knowing that I could leave any time I needed to, and on Wednesday I’d booked a day off anyway to attend school sports day.

My youngest daughter’s school sports day involves a lot of standing up and moving from one event to another. The weather reports said partial cloud.

After two and a half hours of hanging around in full burning sunshine, I ventured back to my car that I’d helpfully parked about a mile away.

It was then that I found it was incredibly hard to walk in any meaningful foot-in-front-of-the-other kind of way. As I was the first one out of the school gates, I wondered what the other parents thought of my stumbling feet; feet that felt like they were made from bags of sand, and legs that felt like they were wading rather than walking.

At least I’d had the forethought of deliberately parking somewhere shady. Slumping into the driver’s seat, I allowed myself a rare emotional moment – probably no more than a few seconds, but enough to release the weight of what I’d bottled up – before turning the key in the ignition and just getting on with the rest of the day.

When I eventually got home there was a letter from Big City Hospital waiting for me. It was my neurologist to say the results of my recent MRI were back. It showed new lesions, apparently.

Now here’s the interesting thing – my neuro’s exact words look designed to set my mind at rest: ‘a small number of small new lesions compared to the scan of three years ago’. For someone who proof reads as part of their job, the use of the word ‘small’ twice in the same sentence stuck out like a luminously sun burned neck. The scan of three years ago that he mentioned had itself shown no new activity since the previous scan when I was first diagnosed, so these are the first new lesions on a brain scan of mine in nine years.

Anyway, my neurologist didn’t think this ‘necessarily need prompt a change in treatment’, but he’s asked that I come in to see him anyway ‘to discuss’.

Hmmm… all well and good if I’m being summoned to ask questions and set my mind at rest, but there’s also a little part of me that feels a little worried.

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.

It’s been a while..

I knew I hadn’t updated this blog for ages but I didn’t realise the last time I had anything to say was September 2015.

I’ve been busy caring for an elderly relative (now in residential care) and editing a poetry journal (now resigned), so I’ve either been exhausted or lacking the will and free time to exert myself with anything less pressing unfortunately.

My MS could also be described, to nick Viv Stanshall’s genius description of Rawlinson End, as ‘changing, yet changeless as canal water’, so it might be a year or two before I realise that anything has changed significantly enough to report on.

So what’s new? Three things mainly…

Firstly, I had a relapse involving optic neuritis about a year ago which kicked me into safe mode for a few weeks and I took some time off work. It’s a symptom that hasn’t really bothered me much for over ten years so for it to kick in was a bit of a shock (and painful to start with). All better now apart from a bit of noise in my vision.

Secondly, I’ve lost a stone in weight. I asked my GP to refer me to my local council-run sports centre a while back to try and get myself in shape. I didn’t have the time to do that, though, as already described, so I just put myself on a strict diet of my own devising. This seems to have worked. I’ve also recently taken to waking up at 5am to go for a run round my local neighbourhood (just a couple of miles each time). It’s a good time of year to do this as you have to keep moving to avoid freezing solid. The only other people around at 5am are milkmen, gritter drivers and people who either commute long distances or care about their careers too much, scraping the ice off their windscreens.

Thirdly, I was referred to my big city hospital’s urology department to sort my rapidly deteriorating bladder problems which were a massive drain (‘scuse the pun) on my quality of life.

I’ll cover the last two points in forthcoming posts – bet you can’t wait.

Until then…

My other ailment

“You’re looking well.”

There’s a lot of messages on MS related social media sites from annoyed MSers who hate to be told they’re looking well.

Of course the reasoning behind this is that MS is an invisible disease and while I may look OK on the outside… blah blah blah – you get the picture.

Can I just go on record that I will never tire of anyone telling me that I look well, or have a healthy complexion or that I’m an irresistable sex god, because frankly it doesn’t happen that often.

One of my wife’s friends dropped by the other day to drop something off and she remarked about how well I looked. I’d spent a day of industrial action working my allotment plot and while I was still feeling the after effects in my limbs I’d caught the sun and, the risk of skin cancer notwithstanding, I probably do look healthy (I also probably glow in the dark).

If people think they have to complement me on how I look because they know I have MS, then let ’em.

One of the key afflictions for anyone with MS, quite apart from any physical symptoms caused by demyelination, is psychological.

On occasion, if I’ve had a bad day and I’m feeling nackered, and maybe my body hasn’t done what it’s meant to do, I can get quite maudlin. If someone wants to remind me that I look fabulous, let them. It won’t make the MS go away, but it will go a considerable way to healing my other ailment.

And by the way… just so you know… you’re looking fabulous.

The Beta Interferon blues – update

After just two injections I can feel the familiar feelings returning. Aside from the flu-like side effects (achey joints), I have been waking up, not suicidal, but with little enthusiasm for life shall we say?

One phonecall to my MS nurse later and I can announce that Rebif and I are officially no longer an item.

A(nother) month of no drugs should clear my system and by that point I’ll have a meeting with my neurologist about possible alternatives.

Of course, one of those alternatives might be a lower dose of Rebif, because whatever I say about it, it has done its job by keeping relapses at bay.

But I’m going to celebrate tonight. I’m looking forward to being officially completely drug free for the first time in six years with all the benefits that brings.

The Beta Interferon blues.

I’m about to go back on Rebif after a four week trial period of coming off it.

It wouldn’t be the first time I’ve done this, I tend not to take it on holiday (just a hassle) or over Christmas (to give myself a break).

So, have I noticed any changes?

On the negative side, I’ve noticed some extra dizziness and tingling arms and hands. A couple of days ago I woke up with a partially numb right forearm extending into my little finger, which isn’t usual for me.

And that’s it!

Of course I realise that a prolonged period off the meds increases the chance of a relapse etc, so I’m going to start injecting again tonight to see what happens next.

On the positive side (and this is a big one) I’m happier.

Granted, I’ve been on holiday to Florida over the last four weeks which might explain my improved Disneyfied mood, but I haven’t had the usual back to work blues this time.

I can quantify the improved mood as well.

A couple of months before I came off Rebif, my GP asked how I was feeling and handed me a mood questionnaire. The same questionnaire is available on the NHS website. I scored pretty highly: 15 out of 20, I think, which puts me bubbling under ‘severely depressed.’

If I complete the questionnaire now, I score 3 or 4, and I get those for MS related things rather than anything mood related. I might get up a lot in the night, for instance, because of my bladder.

Because my mood has improved, I’ve been eating less and been more energetic. I’m also sleeping better. My wife jokes that she doesn’t know many people who can go on holiday to the States and lose ten pounds, but I did. Ten pounds!! In two weeks!

Among the listed side effects of beta interferon 1a (Rebif and Avonex) is suicidal thoughts and depression, so it will be interesting to see what happens when I resume the meds. I’ll be monitoring my mood score and contacting my MS nurse if my situation changes.

The medication choices have changed in the six years since I was diagnosed, so if the worst comes to the worst I’ll have some research to do.

Anyway, wish me luck. Time to get those syringes ready.