Motorways and hidden forest paths

I saw a different lead doctor this time instead of the usual one. He didn’t seem to be as rushed. Do you work?" he asked. "Not any more." "When did you stop? How long after diagnosis?" “I’m not sure. About 13 years I think”.  “You did well," he said. "Most people have to give up work within five or six years of diagnosis”. That should have made me feel proud, but somehow it didn’t. I was relieved that I had been able to work for as long as I had. But needing to give up work, whenever that is, is hard and the thought that I might have needed to stop even sooner was frightening. Just how many huge impacts can MS deliver?

 

Then there's the blood test. When it comes to extracting blood, in one arm I have a tiny vein that is like trying to find an overgrown path in a forest. In the other arm I have a motorway. Although Anna went for the right arm, instead of trying the motorway, she went for a slip road. Halfway through filling the last vile, it decided “I’ve had enough of this.” And refused to give up any more blood. It was stinging too and I was beginning to feel not good. I asked her to leave it for a while before trying again. When she came back to it an hour later, I suggested she try the motorway. It still stung though, more than it ever has before. “It’s because we only have green needles,” Anna said. “We don’t have any of the smaller blue ones. Everyone’s being complaining. We need to order some.” “Yes. Please do.”

When I got to Fenchurch Street on my way home, between speaking to the Customer Service desk to arrange assistance at Southend Central and scootering the 20 yards to the platform, they received news of a broken rail just outside West Ham and there were no trains between there and Fenchurch Street. Mmm… now what do I do? Do I wait for it to be repaired, however long that took, and get caught in the ensuing chaos that will be the soon to start rush hour, made worse with delayed and cancelled trains? What was the alternative? I couldn’t get the tube to Barking because there’s no step-free access at Tower Hill station. And I couldn’t get the DLR to West Ham because there’s no step-free access to the C2C line until February. Ah-ha! I could scooter to Liverpool Street Station, get the train from there to Southend Victoria. Thank heavens for two lines to Southend.

Next visit will mark one year since I began the trial...

The Trial - Here we are at month nine already

 

My nurse has changed again. That’s the fourth one now in nine months. But Anna, who had at least been at the Clinical Research Centre for long enough for me to have seen her about during my last visit, was standing in for Donna’s replacement. Dorothy’s words came to mind when she arrived in Oz… “My… people come and go so quickly here”. “You do seem to have a high turnover of staff in this place,” I said to Anna. “Yes,” she replied but did not elaborate any further.

 

As I had rolled into the clinic on my scooter, Andrew was already in the waiting room. It was good to see him again but we didn’t get time to say much more than the usual greetings before Anna appeared to take us through.

 

The first thing I needed to do was that horrid Columbia Suicide Severity Rating Scale Questionnaire that I have to do every visit. Wearing my clinical head, I can see that if I were to be suicidal, it is a very good questionnaire and goes into enormous detail. But as I am not, it was very tedious.  

Then Dr Anthony came in and it was time for the Extended Disability Status Scale (EDSS). It is a much used and much derided scale for measuring disability in Multiple Sclerosis (MS). It is subject to the opinion of whoever is conducting the test. One doctor’s level three may be another’s level two. I swear it was harder than ever but, by the end, he seemed to think not. He thought I scored a notch lower than last time, which is an improvement. “I know I’m meant to be the blind assessor and not compare,” he said.

I see two sets of people. There are those that follow the trial as it goes. And those who assess at specific points, the bind assessors. The two are not allowed to confer so that the assessments can be as objective as possible.

“It’s hard not to though,” I replied. “That’s why I don’t look at the names,” he answered, “because then I do.” When he did the tuning fork thing, I’m sure more of me was too numb to feel it than last time. But I am always fascinated by the randomness of where I’m numb and where I’m not. The nine hole peg test was definitely harder. I was much more fumbly in picking up the pegs and even less co-ordinated in putting them in the holes. But the 25ft walk test, although slower, was steady enough. And when I walked the furthest distance that I can, I wasn’t as exhausted as I have been in the past.

So there is hope. More about the visit next week…

Coffee in Halndri

Twelve kilometres north-east of central Athens lies the suburb of Halandri. Until the expansion of the city in the 1960s and 1970s, Halandri had been a tiny village. Now it joins seamlessly with the other suburbs of Athens, and is one of the largest, with a population of over 70,000. It’s where my friend, Adrienne, lives and the reason I was there.

The area has its own distinct characteristics, different to the frenetic-ness of the city centre. The houses and flats are rarely more than three or four stories high, nestled closely together among streets lined with trees. The roots lifting the pavement, making walking along them tricky, is made up for by the overwhelming smell of pine. It reminds me of beach holidays on the Mediterranean. There are lots of cars parked bumper to bumper, but few travelling. This is a residential street and it is peaceful.

In the centre of Halandri it is a different story. There’s more traffic than the roads can accommodate and a strong smell of fuel. It’s noisy and grimy. The traffic is at a standstill and moves a yard or so at a time. Leg power is a faster form of transport. But the furnace heat of the air slows me down, so it’s not much faster.

Adrienne took me to a tiny café, hidden in a side street, one car wide. It’s on the corner of an even narrower street. This one has room for pedestrians only. It looks more like an alleyway than a street. But its length and width is full of the umbrella shaded tables of café after café. There’s a low murmur of chatter and clinks of spoons against glass as the coffee is stirred.

This not somewhere for the tourists. It’s where the locals gather. It’s the place to find the best coffee and fruit smoothies in all of Athens. You need to know where it is to find it.

It was relaxed and quiet, but it was the hottest part of the day and a weekday. It’s at weekends and when the sun begins to cool that it gets busy. “Halandri is becoming the place for go for coffee and people come from all over the city”, Adrienne told me, as we sat there, relaxing.

On our way home, we were lured into a bakery by the aroma of breads, cakes and biscuits. They lined the walls inside. Where to look? What to buy? The choice and variety was vast. Eventually, I settled on poppy seed, knotted breadsticks and tiny cinnamon cookies, while Adrienne bought a round loaf. That was tea sorted.

A gentle beginning

After a busy festive season, it's time to go back to a semblance of normality. I'm a bit slow to get going though which is why I'm posting this a bit late this week. I hope you'll forgive me. I'll go back to my normal day next week.

As I've had a sleepy start, I thought I'd begin the year with a cheerful poem about a sleepy cat, inspired by one of my favourite childhood TV programmes. So if you, too, are a child of the seventies, this is for you...

Old Saggy Cloth Cat

Bagpuss is a cat who sleeps all day
Until Emily comes with a toy to play
She sets down a thing
And she starts to sing
The song isn’t long
Then Emily is gone
The thing has been lost
For Emily to find
And bring to Bagpuss
For he is kind
He slowly wakes and his friends wake too
They all yawn and stretch and decide what to do
The mice on the mouse organ
They look at the thing
The set to fix it
And work as they sing
The carved wooden woodpecker
At the end of the books
Is Professor Yaffle
As clever as he looks
He hops off his perch
And comes down to see
He looks at the thing
And tells what it should be
The mice they work hard
To make the thing right
Charlie Mouse tests it
But the fit is too tight
Madeleine the ragdoll
She then sings a song
While Gabriel the toad
With his banjo plays along
The mice try again
And repair as they should
The thing is soon fixed
And now it is good
Bagpuss yawns
There’s been so much to do
He settles to sleep
And his friends sleep too
They slumber in peace
After a day that’s been long
Until Emily comes next
With a thing and a song.

Eight months on and still writing

Christmas is almost upon us and the end of the year is looming. It’s traditionally a time to look back and reflect on the last year before looking forward to a new one. There were three big things that happened for me this year. I started to take part in a clinical trial for a drug for Secondary Progressive Multiple Sclerosis, I went to Australia and I began this Blog.

My MS over the last couple of years or so moved has from the more common Relapsing Remitting kind to the Secondary Progressive kind. The short version to explain this is that in the early stages of the illness, when the body goes all wrong, it then pretty much repairs itself. After a bit it gets fed up with its work keep being undone and stops bothering to fix it. And so when there’s a flare up, whatever damage it does, stays. It’s called secondary progressive because it’s the second stage of the illness. If you have Primary Progressive MS, it starts at this stage. Either way, at this point there is currently no treatment licensed and available to treat it. Hope starts to run away. There is, however, an enormous amount of research happening, some of which is becoming really quite exciting. So when I was given the opportunity to join a trial a light appeared at the end of the tunnel.

Now that I no longer have a restriction on how long a holiday I can take, I decided to go to Australia, and take the time to see all my friends. They live at opposite ends of the country you see.

I’d been thinking about setting up a blog for a while but didn’t know if I had the motivation to keep it up. Having a trial to write about, gave me that. I’ve enjoyed every minute of the challenge of writing a short piece to post every week. I hope you’ve enjoyed it as much as I have. But I think it’s time to take a break over this busy time of year, to refresh and rejuvenate my writing.

I wish you all the best Christmas and New Year and look forward to seeing you all again in January 2015.

A Greek Wedding Part 2 - The Ceremony

Inside the church was a vision of gold and light. The guests filled the tiny space to bursting. Many had to stand. They hushed as the choir began to sing. It didn’t matter that I didn’t understand a single word. It was beautiful.

The Bride and Groom were at the front, with the little bridesmaids behind. The priest sang his words. He placed a crown each on the heads of the betrothed couple, symbolising that they are King and Queen of their home, which they will rule with wisdom, justice and integrity. The Koumbara exchanges the crowns three times, following which the priest did the same. This sealed the joining of the couple as one.

Behind them, the littlest bridesmaid was playing with Helen’s train. Every so often, Helen’s friend got up and straightened it. The little bridesmaid thought this was a good game and ruffled it again.

The Bride and Groom’s right hands were joined, and the rings blessed and exchanged. They were placed on the right hands. The priest read a passage from the Bible, then poured wine into a single cup, from which the Bride and Groom took three sips each. Then it was time for them to take their first walk as husband and wife. The priest led them slowly three times around the table on which had stood the crowns, candles, rings and a cup of wine. It signified the promise of their marriage bond until they are parted by death. At the end of the ceremony the Bride, Groom, their parents and Koumbara stood at the church door while the guests lined up to individually congratulate them.

At the reception afterwards for the Bride and Groom to celebrate with their closest friends and relatives, the top table was decorated with the same flower display as had lined the walk into the church. Around the venue were lanterns and columns with flowers and candles. On each table was a vase of the same flowers. And at each place setting was a decorated ring of entwined branches, flowers and ribbon created by the Bride’s mother.

After the meal was the first dance. Helen and Jason nervously took to the floor. They needn’t have worried. It was beautiful. More couples joined them and the celebrations began.

Helen’s brother led the traditional Greek dancing. Sara joined in though she didn’t know what she was doing. But he was a good teacher and everyone followed his footwork closely.

The cake was cut. The Bride and Groom each fed the other one a mouthful to the applause of the guests. The cake was shared with them and the dancing continued.

A Greek Wedding Part 1 - Arriving at the church

I went to Athens, but not to see ancient Greek ruins. I was going to the wedding of my two good friends, Helen and Jason.

As in British weddings, it is tradition that the bride and groom do not see each other the night before the big day. SoJason went out with his friends then back to his parents for the night, while we girls had a delicious meal in a nearby restaurant. It was great to meet Helen’s friends. They all spoke such good English, I felt embarrassed that it’s the only language I’m fluent in. But they made me feel very much part of the group even though we had only just met.

The next morning, Helen went to her parents to prepare for the day. Another friend from the UK, Sara, and I got ready at the flat and then took a taxi to her parents. It is tradition for the bride’s friends to visit during the day’s preparations. Having arrived at the address, neither of us could remember which number within the building they lived at. Thank heavens for mobile phones. Helen let us into the building. “Can you remember which floor they’re on?” “Err… no.” Out came the mobile again.

Inside the flat it was all go, but calm. The dress was hanging up, the mother of the bride was having her hair done. Then it was Helen’s turn. The concentration on her face and that of her hairdresser was immense. The photographer arrived and set to work. At one point she was recruited to help with the hair. Meanwhile Helen’s mum was having her make-up done. Finished and dressed in her finery, she looked beautiful.

She, Sara and I left to go to the church to organise the final arrangements. It was tiny and beautiful and in the middle of a wooded part of town. A cream carpet was laid from the steps to the entrance. Then it was lined with flowers and lanterns that lit the path as the sky darkened. Esther, with Nikos’s and Margarita’s Mums prepared the Wishes Table. On it was a book for guests to sign with wishes for the happy couple.

The groom paced about nervously. He looked smart in a blue suit with a lilac tie.  Soon, the Koumbara (Maid of Honour), the little bridesmaids and the guests began to gather.

Then, with a serenade of beeping car horns, the Bride and her father arrived. A beautiful, white vision emerged from the car. The congregation applauded and parted to allow Bride and Groom to join. Together they lead everyone inside…