Urology. Rhymes with Eurghh-ology

Urology. The dark arts of investigating malfunctioning bladder and bowels. I doff my cap to anyone who enters or leaves medical studies and says, "I know, I'll become an expert in wee and poo and stuff."

Sadly, like many a person with Multiple Sclerosis, I'm well-acquainted with urologists and their capacity for rummaging around and describing with complete precision the shape and size of my prostate. All the while chatting to me about the time of day or this afternoon's weather.

And the title of my blog, "One man and his catheters," may just indicate one routine I have to follow three or four times a day. The first time I did it, the nurse training me, (no, she wasn't young, Swedish or gorgeous), told me she feared I would pass out. It really is rather scary at first poking something up your willy. But it soon becomes as routine as brushing your teeth. And much quicker. Best not mix the two jobs up though...

Usually a urology check-up lasts a few minutes at most. This afternoon, as a result of my recent morphine-hazy hospital stay with a stonking bladder infection, I'm in for a thorough examination. Could be up to four hours they tell me. I'm wincing thinking about it. And I won't be reporting any details back, thank you.

Ten Years... Happy Diagnosiversary to me!

Tuesday May 1st 2007. It was cloudy and a bit miserable I recall. Perhaps some drizzle.

For the previous three or four months I'd been going through a barrage of tests for those clever-ologists to find out what was going on.

My brand new neurologist, a bookish little chap with small round glasses, had made me do various eyes-closed tests, touch my nose, touch each finger to each thumb in rapid succession, and some creative variations on walking in a straight line. He had also poked my feet with a pin a few times. I hadn't realised how numb they were until that point. Still a bit ouchy though.

My new urologist, meanwhile (the waterworks specialist), poked me and rummaged round in rather different places. Though fortunately not with a pin.

Off I was sent for a scan of my brain and spine (MRI). Strange, unpleasant, buzzy. They forgot to scan my spine so I had to go back. Strange, unpleasant, buzzy again. I blogged about one recently, trying my best to describe the awkwardness of it all... http://onemanandhiscatheters.blogspot.co.uk/2017/02/my-oh-my-oh-mri.html
And a lumbar puncture, otherwise known as a spinal tap in the USA and in the world of pop... It's truly horrible, lying side-on in the foetal position and having a doc drill millimetres away from your spine to extract a few drops of liquid. After the pain-killers, the sensation was a 'grinding' one. But it hurt like buggery for three or four days afterwards.
Finally a very strange test - as if the others weren't bizarre - where I had to watch some dots on a screen while receiving constant mild electric shocks to my hand. Ours not to reason why...

Weeks had passed by while the experts scratched their chins knowingly. Or more likely while my file sat in a sky high in-tray gathering dust. And all that time Mrs W and I sat there with rising blood pressure, biting our nails and wondering what was wrong with me. Joining the dots, we suspected it might be serious... Constant pins and needles; weakness in my left leg whenever we went for a walk or a run or a bike ride; bladder issues, with many a quick roadside stop, many a tree and bush enjoying my emergency visits; and 'blue pill' sales doing very well thank you...

A neurology appointment letter finally crashed onto our doorstep, but it was set for a month or more away. We just couldn't wait that long. Suspecting our GP might already know, we booked a hasty appointment with him. Big mistake. Huge. Our GP did know, but did he care? Had he thought about how to to tell us I had an incurable disease?  That MS symptoms vary from person to person and that the disease can be just as extremely mild as it can be extremely serious? Of course not.

The conversation is hazy in my mind, but I remember the GP's attitude. Relaxed, chatty, arrogant. As if he was telling us I had a verruca. He sent us off with no information or reassuring words whatsoever and I remember his closing nonchalant farewell, "Good luck old chap!"  Grrr... If he wasn't retired now, I'd find a way to get him retired. The rest of the surgery is great so I won't name and shame.

Home we drove in a daze and after a tearful hug, onto google I headed. Another big mistake. Huge. Within minutes, because it's usually the worst cases that make the headlines, I decided I had only a few years to live at best, and effectively my life was over.

Happily, I couldn't have been more wrong. Life is good, if challenging on a daily basis. With the love and support of family, friends, colleagues, carers, charities, volunteers, social media, health professionals and my amazing employers, I'm ok, honest. I need a wee though. And maybe a nap.

I dedicate this blog to incompetent GP's everywhere. Thankfully they are in the minority.

Death sentences and Life sentences. The blue pill or the red pill?

Hurrah! I'm out of hospital after a total of 13 nights fighting a bladder infection and temperatures twice steaming scarily over 41 degrees.. My ward routine that started around 5am with a rude awakening for blood pressure checks and a refreshed IV drip is no more. It's been replaced these last mornings with a gorgeous 6.30am start, the time my two much-missed children are allowed to start bounding around the house before school. I'm utterly exhausted and I'm blissfully relieved...

My last five hospital nights were spent in a ward of four chaps including myself. One stubborn but lovely old gent of 89 also recovering from an infection. A big nose, a big smile and capable of humongous, prolonged noises when sitting on a commode thrice daily.

Another, a bushy-haired, goatee-bearded Scouser, was trundled in a few hours after me with increasing back pain and a hacking cough. It had come out of nowhere. When he arrived he was extremely and forever uncomfortable. By the time I left he was the colour grey, in agony, on constant oral morphine and had been diagnosed with at least three cancers, including bone and the esophagus (throat, roughly). It was terrifying to see him worsening what seemed by the minute, and torture every night listening to his suffering. He had a wicked laugh and kept it going through all the bad news and grimacing. He made a special effort for the constant stream of worried family and friends dropping in. Heartbreaking.

The last of the four was a 6 ft 7in East Londoner, loud and sweary of mouth. Never stopped talking but most of what he spouted was great fun. Like me, he has an 11 year-old son. He came in knowing he was two years into pancreatic cancer, but with a newly bloated stomach. It was drained of over 4 litres of fluid one morning - Charming, but I was delivering not far off that via a catheter, so each to his gruesome own. One morning, a posh-looking consultant marched in and drew the blue curtains around his bed. Those blue curtains are handy enough for privacy during a clothes change, a bed bath, or a musical sit on a commode (see above). But they're hardly the best way to deliver devastating news. I tried not to listen, but it was impossible not to. Right there, three metres away from me, he was told firmly but with compassion that he had three to six months to live. He hyperventilated, he wailed, he swore like never before, while I cried quietly to myself taking it all in.

As the curtains drew back, I considered pretending to be asleep, but instead took a deep breath, and asked him how he was. I let him pour out his grief and confusion, and slowly he came to a calmer place. He called his wife in and gave her the news. More counselling, more gnashing of teeth. Given I was feeling bloody awful myself, and with Scouser possibly facing a similar fate, these were perhaps the hardest, most intense few days of my life.

I have a life sentence. There is no cure for Multiple Sclerosis, and there's unlikely to be one in time for me. Indeed probably not for a long time after. At my MS Centre, I meet lots of cancer survivors who come in to use our Oxygen tank to accelerate the healing process. I learn so much talking to them. They are usually in remission, and hoping that they'll stay that way. I look at them unable to comprehend what horrible treatments they have faced. They look at me, permanently disabled. More often than not, I know they are glad they have 'only' had cancer. And I'm glad I 'only' have Multiple Sclerosis. We frequently and guiltily say it out loud to each other.

The guys in my ward were cruel extremes, but definite Life Sentence or (potential) Death Sentence. Which would you choose? I hope you never have to.

On Porridge and Patients…

So my escape from hospital was brief by any depressing standard. Out Saturday evening in time for a delicious Thai takeaway, shared with my equally delicious wife. All the ‘deliciousier’ after five nights of beyond bland (‘they try their best’) hospital food. A lovely lazy Sunday with the family. Blue-lighted back in on Monday evening with another raging temperature, paralyzing cramp, and a brand new sensation to take in, a bladder in spasm! Indescribable but most definitely bizarre and thoroughly horrible.

Usual routine of an overlong stay in A&E and a confused couple of nights in an Assessment Ward. Then out into exactly the same ward as last week, and happily, a new selection of three different chaps to share the endless, relentless and often degrading routine of 24/7 hospital life.

I say ‘happily’, because alongside two pretty much unconscious patients last week, I was plonked opposite a truly odious man. He was the spitting image of politician and loudmouth George Galloway, complete with scowl and arrogant air of superiority. A bit skinnier and possibly older... I remember his real name, but I’ll call him George. George’s main sin was to be abusive to pretty much every member of staff. From cleaners to doctors, nurses to caterers, he always found a reason to take umbrage at their reasonable requests and routine questions. He shouted back, sneered back, complained to anyone in or out of hearing range, and generally tried his damnedest to make everyone’s life more miserable than his. The National Health Service is far from perfect, but it is full of overworked, underpaid staff, nearly all of them straining and multi-tasking as best they can to make life comfortable for patients. And in return they receive too little thanks, far too many snipes, and an astonishing level of verbal and physical abuse. ‘George’ was far from being the worst offender, but he was definitely the blackest cloud in shouting distance of my bed. And he was forever in my line of sight.

Having thoroughly grated my chattering teeth with his attitude, George further managed to wind me up with his insatiable hunger. Overnight, from 10pm and every couple of hours, he would emerge from deep sleep to shout out for breakfast and some biscuits. I would lie there suddenly awake and seething... When breakfast finally arrived he would order five Weetabix, a bowl of porridge, and two pieces of toast. Then demand more porridge. The rest of the day was spent in similar style, pursuing the next meal, and nagging for biscuits in between. 24 hours of non-stop evil foraging. I hated him, and that’s a phrase and a sentiment I try to avoid.

Just as I was due to be discharged – for the first time at least – I discovered George was in hospital with a brain tumour. When sufficiently healthy, he was due to leave his own house forever and move into a nursing home. I don’t know his prognosis, but I know he had a right to be miserable. And I know a brain tumour could have subtly or unsubtly changed his character.

I’m regularly reminding people that Multiple Sclerosis is often an invisible disease. Yet here was I having very very bad thoughts about poor old George with a brain tumour. I've learned my lesson I hope, and can only electronically wish George well. Must not judge, must not judge…

(His bonkers breakfast order still winds me up though) 

Blue Lights, Morphine and a Resuscitation Room

OK, so there's me booked to speak on Wednesday to 500 health professionals at the thrilling 'Infection Prevention and Control 2017' event. Lots of clever, senior medical people in the line-up And little old me, who wouldn't know his Metatarsal from his Metabolism. I was there because I'd been on the other side of the fence, twice hospitalised by bladder infections, or UTI's. Urinary Tract Infections. I do know that hokum phrase at least.
Here's proof I was on the line-up. I had 20 minutes to talk about my bladder. Rock 'n Roll...
Infectioncontrol2017.co.uk/speakers
So of course I had a blog lined up in my mind. How fun it was to say 'willy' at a medical conference. How when my first bladder control symptoms emerged I lived in France, so I could pee anywhere. That sort of thing.

And then guess what? Sunday night before my grand outing I felt weird, Monday too. And by the evening with a raging fever and painful cramps setting in down my left-hand side, I knew I had another UTI. The two nice paramedic chaps knew I had a bad case too and blue-lighted me to my unfortunate home-from-home, Luton & Dunstable Hospital. I was whizzed through from A&E into my own hideaway, disturbingly called the Resuscitation Room. They assured me this was just about speedy availability, but I did wonder just how serious this was going to be.

The team had a nightmare undressing me, as the fever had already paralyzed my left arm 90 degrees at the elbow, and was scrunching my hand into a painful, immobile claw. Removing my shirt around me was like a puzzle, though I did let them know they were welcome to cut it apart, so desperate was I start being pumped full of whatever.

Whopping catheter shoved in you-know-where, canular inserted (in my arm!), blood and urine samples carted off, UTI confirmed. But the pain in my cramping left elbow and hand were off the scale now. I was breathing fast and short, and my heart was pumping like a mouse's. I heard the word 'morphine' mentioned, and once that happened, I wouldn't stop nagging those around me to do the deed. It felt like hours, though was probably a matter of minutes. Morphine, marvellous morphine, intravenously. Almost instant, glorious pain relief and some freeing up of the tension. My fingers could move enough to take a crap selfie.

A whoozy two nights in an Acute Ward, with further odd morphine doses as the antibiotics grappled with my gremlins and my temperature - over 41 at one point... And early Wednesday morning a transfer to a normal,  four person ward. That three night stay has a whole other blog in it.

Suffice to say, I'm out and alive. Grateful to the overstretched NHS for acting so speedily, and for filling me with so many needles. And this visit, on at least two occasions, the morning toast was warm. A butter-meltin' miracle...

And now the unpleasant waiting game to play with Multiple Sclerosis. How much damage is done, how much can I recover? Right now I'm awaiting a home follow-up visit, then I'm back off to bed... No morphine though, but that's because there's no pain, hurrah!