End of an Era

After two years, the trial is now finished. No more visits to the Clinical Research Centre. No more assessments.

In some ways I’m back to where I started, and yet I’m not. I’ve not lost anything by taking part, except for a bit of time and a bit of blood. Instead, I have gained so much. From the first suggestion of the opportunity to take part, it has been a fascinating experience.

It’s been daunting, terrifying and reassuring all at the same time. Every aspect of my health, physical and mental, has been assessed. I’ve discussed MS (Multiple Sclerosis) symptoms I’d rather ignore. Bowels and bladder, that kind of thing. I’ve had lung function tests (they’re hard work), MRI scans, eye examinations, skin examinations, EDSS assessments (Extended Disability Status Scale used to measure disability in MS), questionnaires of all kinds, ECGs, urine samples and blood tests. Lots of blood tests. I’ve parted with so much blood, that most of my veins now run for cover when they see a needle.

 

I’ve been able to monitor the fluctuations in my symptoms and watch the variations. I’m intrigued how some things improve and others get worse, and how they swap about like they’re dancing.

It all means I have known exactly where my MS sits, and so I’m more confident in my discussions with my local consultant. I’ve met some interesting people. I’ve debated the pros and cons of assessment tools with doctors and nurses, and had conversations about the trial process and progress. I’ve compared notes with fellow trial subjects and we’ve laughed about some of the assessments - The depressing tone of the recorded voice asking questions about suicidal thoughts and actions.

I’ve enjoyed going into town every few months. I’ve got to know all the station staff who organise a ramp to help my scooter and me on and off the train. And the staff who do the assessments have become friends. I’m quite sad that it’s come to an end. I shall miss them.

At the same time, this is the exciting bit. This is when two years of work, by over 1500 people in more than thirty countries across the world is collated and analysed. This is when we discover whether the drug has been as effective as hoped, and whether or not it can progress towards becoming a viable treatment. It is when I will find out whether I’ve been on the medication or the placebo.

What do I think? It’s a question I’ve been asked endlessly since I began this process. The honest answer is... I don’t know. I’m pretty sure I’ve been pushing my limits and getting away with it. But is that because I’m on a new drug? Or is that because I’m in a more positive frame of mind?

Whatever the outcome, it has been exciting and has given me hope. And hope is an important commodity. Hope is everything.

European Union?

By the time the referendum arrives,
Our decision may be irrelevant.
There may no longer be a European Union to stay in
Even if we want to.
The union is being tested.
Syria’s war is our war.
Its people are fleeing to us.
Desperate people
Exchanging one war-torn area for another.
It’s a different kind of war, but it’s still a war.
One of harsh words and closed borders
Within Europe as well as on the edges.
Rejection from every country
Not just their own.
Refugees are not wanted here.
Europe fears letting them in will let terror in.
But terror is already here.
Frustration and anger,
Anger bred by fear.
Terrified individuals and terrified families
Looking for a future.
There isn’t one.
Babies born on the road
Have no home or nationality.
There is nowhere they belong.
No home to return to;
No home to go to.
Nowhere to shelter.

The Beach A-Z

Approach the beach

Beat the sand

Crumble the castle

Dig a hole

Eat ice-cream

Fish in the sea

Gamble your pennies

Have fun

Invite friends

Jump the waves

Kick the sand

Lick the ice-lolly

Make another castle

Need a flag

Open the basket

Picnicking for lunch

Queue for the loo

Run from the rain

Sing for the sun

Tempt it to shine

Umbrellas at the ready

Venture forth

Win the race

X marks the spot

Yawn as the day ends

Zzzzz.....

 

Where? Nowhere.

I wrote this poem last year. I think it is almost more relevant now than it was then. So here it is again...

Where do you go when no-one wants you?

Who do you turn to when you have nothing?
When everything you ever knew has been destroyed.

When the line between life and death is paper thin,

When the journey to safety is fraught with danger,
And when safety won’t let you in.

When the Convention of Human Rights no longer seems to apply.

When the United Nations no longer seem united.
And the European Union is in disarray.

How do you comfort your children

When you are as scared as they are?

When the only thing left to lose is your life

And nobody is willing to save it.
Where do you go?

A New Camera

Original Routemaster Bus

I thought I might do something a bit different this week. Those of you who know me and/or follow this blog regularly, will have picked up that I like my little traveller’s tales.

A London Icon

I like being a tourist in my own town. I can make even the most mundane of everyday journeys sound interesting.

The "Walkie-Talkie" Building that goes out at the top

 

The other thing I very much enjoy, is taking photos.





 

St Paul's Cathedral amongst its modern companions

 

 

Every photo that has ever appeared on this blog is one of mine, and my walls are filled with pictures of my travels.

 



St Brides Church

 

I’m not an expert though. My favourite camera function is the one called “intelligent-auto”. It lets me do what I like best, which is frame the shot and click. I don’t have to worry about all the technical stuff like aperture and shutter speed; the camera does that for me.

 



An old building  sandwiched between two new ones

 

Anyway, I digress. The point is that I treated myself to a new camera which I played with, as my scooter and I trundled from Fenchurch Street, past St Pauls and along Fleet Street to Covent Garden.

Ballet Dancer statue near The Royal Opera House

 

There are so many interesting points to capture along the way. I thought I’d share a few of them.

 

Red Telephone Boxes

 



February 29th

That extra day we get every four years that we let pass by and barely notice. And yet it’s a very important day. It delays the aging process. There’s another day between you and the birthday clock notching up another year.

By the time you get to twenty-eight, you’ve had a whole week of extra days, two extra weeks by fifty-six, and by eighty-four you are three weeks younger than you would have been had there been no February 29ths. Instead of being eighty-four and three weeks, you are only eighty-four. Think what you could have done with that time if only you had noticed.

And what if you’re born on February 29^th? You get an extra three years between each birthday. So by the time you reach your twenty-first, you have squeezed in eighty-four years’ worth of experience.

If you really want some fun, you can cross the International Date Line on February 29^th. You don’t just play with time, you confuse direction. If you travel eastwards across it, you leave the Far East and end up in The West, and you time-travel to twenty-four hours ago, giving you the same day again. You can double-book yourself into two hotels in two continents on the same night and sleep in both. If you do that on February 29^th you don’t just get one extra day; you can have two.

Of course if instead, you went from west to east by heading west, you’d time-travel forward and skip a day. Unless the day you skip is February 29^th, because for three years out of four that day doesn’t exist anyway. So you could lose a day without actually losing a day.

But where’s the fun in that? Go the other way. It’s much more exciting!

Confessions of a Professional Plant Killer

My Grandad’s green fingers, whilst reaching down to Mum, have not extended to me. If you buy me a plant, it’ll be dead within a fortnight. But my reputation as a professional plant killer is being threatened.

My Christmas Poinsettia is still alive in February. It looks a bit thin I admit, but it’s growing new leaves.

And a fuchsia cutting that broke off a garden plant, which I stuck in a glass of water on the window sill, is sprouting roots and a bud.

What is going on?

I’ve not completely lost my touch though. I killed the mint!