Les Misérables assessments begin…

Being a full twelve months since the Drug Trial began, the full complement of assessments were due. That meant five trips into London. There was the MRI, the Lung Function Tests, eyes, skin and the usual round of blood tests, questionnaires and EDSS. And like the initial ones, they are in close proximity time wise. Three of them were in the same week! A serious challenge to my fatigue levels.

The first assessment was the skin one. Last year she had inspected every mole, spot and scratch which she then wanted photographed. She was pleased to note that the mole on the third toe of my left foot had not changed in any way. I didn’t think it would. It’s been there forever. Quick inspection over and the assessment was finished. It had taken all of twenty minutes. I was free to go meet my friends. It felt like an anti-climax. Part of me felt what was the point? It had been a long journey for a short visit. I was glad I was meeting a couple of friends afterward to go to the theatre. We were going to see Les Misérables.

As I was travelling with my little mobility scooter, I had booked assistance for when I got to the theatre. It was fantastic. I couldn’t go in the main door because there was a step but they took me round to a side entrance. They took us to where I could park the scooter and direct to our seats. They came to ask if I needed anything during the interval, and at the end, they brought my scooter to me.

The show was even more wonderful than I remember from twenty years ago. I’d forgotten just how much more there is to the story. The cast recording that I often listen to is but a glimpse. It is a powerful tale of society and life in 19^th Century France. Victor Hugo was the French equivalent of Charles Dickens and, like Dickens’ tales, although written over a hundred years ago, Les Misérables’ message is just as relevant today. Tears pricked the back of my eyes when Jean Valjean sang Bring Him Home. In my head I was singing and crying with him.

By the end we felt rung out with emotion. And we had seen the matinee. How do the cast go through all that again twice in the same day? I was exhausted.

One Year On...

I’m back at the Research Centre again. When I started this blog, it coincided with starting the trial of a drug for Secondary Progressive Multiple Sclerosis, and I thought it would be great to follow as it proceeded. Except, of course, that it is only the anticipation at the beginning and the results at the end that makes it exciting. The bit in the middle, the regular assessments are less so, and only happen three monthly. Never-the-less it has so far been an interesting experience and a reference point as to how MS fluctuates over time. The regular ups and downs and the more defined changes.

I have come to realise that, in terms of the research and my assessments at the Centre, I am more of a subject than a person. They look for different aspects of MS than my local hospital does. Being a trial, they monitor every aspect of my health, both physical and mental. Although reassuring, discussing intimate and personal aspects is also daunting. I just have to steel myself, take a deep breath and go for it.

And my relationship with the local hospital, who referred me to the Research Centre as a prospective candidate for the trial, has shifted slightly, in that there seems to be longer gaps between my review appointments. But  my discussions there been more productive. Having to regularly talk about all the gruesome symptoms that I would rather ignore, has made me more able to do so. I'm also more able to think more clearly about the impact of various difficulties because I'm clearer about where exactly those symptoms sit. That's a good thing I think.

Up until now, I have refused to be drawn on whether I think I’m on the drug and what difference, if any, it is having. I’ve had a sneaky suspicion since early on in the trial, but I was afraid to acknowledge it in case my hopes were just that. Was it real or just the placebo effect? Who knows?

So what I think now?

The one thing it has done, and the most important effect, is to give me HOPE. With the trial, if I’m on the drug there should be a slowing of progression. That’s the expected outcome. It is a Phase III trial and the early trials were promising, although they were in Relapsing-Remitting MS. And even if I’m on the placebo, I’m still helping to forward research into treatments. That’s definitely a good thing.

Of course, each person's MS is individual to them. So how do I know if mine is progressing any slower with a new drug than it would without? It is only by comparing the rate of progression, over a significant period of time, of a group of people who are on the drug with a group not on it, that scientists can have any hope of establishing an answer.

However, on a personal level... I do feel like I have been pushing my limits and getting away with it in a way that I haven’t been able to in a very long time. My last relapse, and significant progression, was in 2012, as the London Paralympics finished and before I started on the trial. So maybe…? Just maybe...? There is hope. And that alone, is a powerful commodity.

 

Mrs Overall

It was a typical seaside café, small, with half-a-dozen wooden tables and chairs. But it had an added dimension in the form of a waitress who bore an uncanny resemblance to Mrs Overall.

As we found a table and started taking our coats off to sit down, she came over. “Are you coming or going?” she asked. “We’ve just arrived,” said Amy. “Oh. Well I’ll leave you for a minute. The menu’s on the table.” She waved at it and shuffled off.

The menu was basic. We settled on a cream tea for two. Mrs Overall didn’t seem to be coming back, so Amy went up to the counter to order. The Cream Tea came with a pot of tea. “Could I have coffee instead of tea?” she asked. “It comes with tea” was the baffled reply.   “Ok. We’ll have a cream tea for two but make the pot for one. And a mug of black coffee on the side please,” said Amy. “Do you want a cream tea for one or for two?” “A cream tea for two and a mug of black coffee.”

“That was painful,” said Amy when she returned to the table. A few minutes later, Mrs Overall came across, still confused. “Did you want a cream tea for one or two?”

“And we thought it was us” came a voice from the next table. “When she brought our tea over, she just brought the teapot. There were no cups. We had to ask for them”.

“Oh dear,” I laughed. “I wonder what we’ll get.” As they left, they wished us luck. We were now the only people left in the café.

Mrs Overall came over carrying a large tray that seemed almost too heavy for her. She placed it on the table and dispensed a large teapot, a mug of black coffee, two knives individually wrapped in little serviettes and two plates. On each was a tiny, warm scone, a small pot of solid jam and melting squirty cream that was in danger of running off the plate.

“Could I have a cup please?” I asked. She looked confused. “But you asked for a mug of coffee. And tea for two.” “Yes. But I’d like a cup to drink the tea from please.” She scanned the table. “Oh” she said.

She wandered off and came back with a small cup missing its saucer. Then the sugar arrived and was plonked on the table with a thud. It was just as well neither of us needed it for we had no spoons.

The scone was quite nice and the tea drinkable. After a while, Mrs Overall arrived with the bill and waited for us to find the money. She looked at my jumper and asked “is that a cat on the front? Do you like cats? My daughter’s got cats.” She rolled her eyes and tutted. “She’s got names for them all.”

Jump

Another 200 word story...

Why did I do that? If only I hadn’t. Then it wouldn’t have happened. Everything would be fine. Would those few minutes really have been such a bad thing? I was on a mission. I had to be at the meeting on time. I had to make an impression. I wanted time for a coffee first, to get myself prepared. My career depended on it. I needed to be calm, measured and in control.

She was beautiful. Her hair flowing in the breeze, immense concentration on her face. This is a girl who knows where she is going, I thought. She had her whole life ahead of her. She was at University. The basket on the front of her cycle was full of books. She had a stuffed rucksack on her back. The good girl was wearing a cycle helmet and a high vis sash across her chest. There was another taped across her backpack. But that’s not what caught my eye. It was her long, blond, flowing locks. But I saw her too late.

A split second can change your life. It could have been so different. If only I hadn’t jumped the lights.

Um...

More flash fiction. A story in 200 words...


I’m trussed up in a dark corner and forgotten. My arms are tightly bound together. At last, I get to see the light of day. I go outside. Fresh air! I’m unbound and can open up to my full potential. Just for a second, it is wonderful. Then a deluge of water hits me. It is relentless and cold. On and on it goes. Finally, I am taken back inside. I’m given a good shake. Drops of water fly off everywhere. Relief. I can dry out. Or maybe not. I’m bound again, still wet. But at least I’m not hidden.

I’m lifted and unbound. I’m outside again and can stretch, even if I am pounded with more cold water and a fierce wind too. I catch it. It tries to pull me away. I’m straining to escape. No such luck. But this time when I’m taken inside I’m allowed to stay unfettered. I’m not in a corner. I’m spread out in an empty bath in a room with a window. “This is meant to be unlucky”, I’m told, “but it’ll be all right”. Yes, it’s all right. It is definitely all right.

 

Train

We've been doing some flash fiction in my writers' group recently. This is my first effort. A story in 200 words...


She stepped out of the door. Her face stung as the cold air smacked it. But it was a relief to be out. She started walking. She didn’t know where to. She just walked as if in a trance, but with a purpose to get away. At the Railway Station, she bought a ticket to the end of the line. It was a single. She wasn’t coming back. At each stop, the train emptied more people. Nobody boarded. By the last stop, she was the only one left in the carriage.

She sat still for a few moments, gathering her thoughts, if only she had any to gather. Leaving the train, she walked along the desolate platform. The street outside was empty. A little way along was a sign directing her to the sea. She followed it.

She found a wide empty beach. The tide was out, revealing mud beyond the sand. Stuck in the mud, was a small boat. It was tilted to one side with no water to keep it upright. Sad until the tide returned the sea to rescue it.

Who would rescue her, she wondered.


 

Bill

My Mum’s much-loved cousin died early Christmas morning. This is my tribute to him…
 

Bill, with his infectious laugh,

When his upper body jogs up and down.

He greets with a smile and a hug.

Always pleased to welcome

And sad to say goodbye.

Every summer, a party in the garden.

Always the sun shone.

He took charge of the barbeque,

And left Jan to do the rest of the food.

Talking and laughing all afternoon

A grandchild visited all summer,

A different one each year.

Random guests also stayed.

Often from overseas.

Always they were welcome.

Russia. A favourite place.

The scouting movement,

International links

Building friendships,

Sharing experiences.

He was Brother, Cousin, Uncle,

Husband, Dad, Grandad.

Friend.

Lovable and cuddly.

Bill