Still as stone and breathing deeply

The next two assessments were the MRI scan, always a challenge, and the Lung Function Tests. You don’t need to fly to make your ears pop.

The MRI was nowhere near as stressful as last year. For a start there was no waiting around. A few minutes after I arrived I was called through and the cannula was put in straight away, so I didn’t feel anywhere near as ill as it had made me feel last time. It was still slightly uncomfortable but that goes with the territory. And even better, I then went through for the scan. The hardest part of an MRI is lying dead still for almost an hour! That’s not just a turn of phrase; dead still is how you need to be for the scan to take a clear picture.

I was all right for the first half of the scan but towards the end I started to fail. “Don’t worry about it”, the radiologist said just before I left. “I wasn’t going to”, I thought.

She slid me out of the scanner halfway through to add the contrast dye through the cannula. “It’ll feel cold as it goes in”, she warned me. “Yes it does”, I replied. “Can I have a blanket too?”

The cannula was removed within a few minutes of the scan finishing, but I didn’t put enough pressure on it and when I looked later, it had bled, leaving a bruise. “Oh flip!” I thought. Usually I’m really good and I never bruise after a blood test. Oh well.

I hate the Lung Function Tests. All the breathing… in, out, keep going, hold, now as fast as you can. That’s what makes your ears pop. Breathing out quickly. I can only do so if I pretend I’m blowing out birthday cake candles. I had to do each test three or four times before she was satisfied that I had done my best. She gave me a few minutes rest between tests, but even so, I was exhausted by the time they had finished. Thank goodness there’s another year before I need to do them again.

The merry-go-round continues

The next assessment was my eyes at Whipps Cross Hospital, not the easiest of places to get to at the best of times. Going by car would be the easiest, but because they put drops in my eyes to dilate them, I’m not allowed to drive. Travelling by public transport is further complicated because I need to take my mobility scooter and so need step-free access. It’s taken three visits but finally I have worked out the best way. One train to Stratford then one bus to the hospital. Except there were problems on the line that day and I couldn’t go that route.

That was ok. There are two railway lines into London from Southend. I’ll get the other one to West Ham and the Jubilee Line or DLR to Stratford, I thought. Err…no. There was no lift at West Ham for the moment. Well there was a third option? I took the train to Limehouse and picked up the DLR from there going, via Poplar, to Stratford. It turned out to be quite straightforward, but my simple journey of one train and one bus had become three trains and a bus, and felt like it took forever.

I arrived five minutes before my appointment. No time for a cup of coffee then.

There was a brief vision test with my glasses on then in went the drops. They stung a little and it was hard to resist rubbing them. But they soon settled and after a few minutes they had dilated my eyes enough for the scan. Look at the green light and don’t blink. Why is that the first think you want to do when someone says don’t? Scan done and looked at by the doctor and I was all finished.

Fortunately for me, my eyes have not been affected by MS and the only problem I have I related to age. I’ve got to that age when my sight is lengthening. I don’t yet read at arms’ length, but it’s coming. Otherwise my eyes are as healthy as they can be. Something to celebrate I think.

There was a short wait for the bus and I was back at Stratford in no time. I was desperate for a cup of coffee and some lunch. Oh look. There’s Westfield. There’ll be lots of places to eat in there and I can do some shopping at the same time.

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.