Saturday, 27 August 2011

“Reasons why the north will always be better than the south....”

I don’t drink beer but I do buy pints for friends and by ’eck it was cheap up north. As you can see from this photo MyMan posted on Facebook with the caption: “Reasons why the north will always be better than the south....”

We had a wonderful few days and the best news came on Thursday via a text from my MS nurse: 'Morning. Yr pacmans have returned. Hooray! 0.7. Text me when u can come + see us for ecg attachment.'

I was wired yesterday and now am detached and hoping the red splodges will have faded before tonight’s posh frock wearing for a friend’s 40th birthday party.

I’m back on Gilenya. I have wonderful MyMan who literally went the extra mile for me on our Yorkshire break. As he would say: ‘all is good’. And he’s a Yorkshire man.

This is my reason why the north is better than the south

Friday, 19 August 2011

This is how it is but that was how it was

I’m going to Huddersfield, West Yorkshire tomorrow. It’s a bit like going home. I lived in this bastion of Luddites’ uprising for many years. It features the location of the first home I ever owned. A wonderful stone built, end terrace house appropriately enough opposite a mill where they spun yarns – a bit like me. Though mine are less good at knitting into cardigans.

A great friend of mine still lives there. Not in my old house but in one of her own, a back-to-back in what some might think of as a slightly posher area of town. She doesn’t have a genuine Irish pub down the end of her street. Nor a mosque at the other end.

Many years ago we went away together on one of my very few holidays abroad. I was reminded today that I had promised to email my photos of it to her although I have already given her a little booklet with them all in. I had scanned the prints for an online site so I could create that booklet. They weren’t taken on a digital camera – it was that long ago.

I love old photos. They remind me of how things used to be. How I and my friends and family used to look. Things we used to do. Just this morning, I emailed a bad photo I had taken on my mobile to MyMan saying: “I still want a photo of you… and of us together.”

He doesn’t like having his photo taken. I don’t particularly like it either. Of course, some photos are different. They are a professional necessity. Despite this evidence from childhood, I am not really a poser – I’m the one in the middle!
At home I have a photo frame with a picture of me and two of my best friends in. The frame says Good Times all round the edge. That’s what photos are great for – reminding us of the good times. In the dark days and in the dimness of my diminishing memory I need those reminders.

I hope I can persuade friends to take some photos over the coming few days. Then, in years to come, I’ll be able to look back at them and say “This may be how it is, but that was how it was”. Meanwhile, tomorrow night me and my Huddersfield friend will be saying “those were the days my friend”. I don’t think we’ll be singing it. Even in Corfu we weren’t that drunk.

P.S. Hopefully, on Thursday I'll get my new blood test results. Equally hopefully there will be something to celebrate and I will be having to curtail my Yorkshire holiday to come back for the ECG testing that accompanies restarting wonder drug Gilenya. Cross your fingers for me please.

Saturday, 13 August 2011

For the Longest Time

It’s that time of year again. I’m not there but I have hugely fond memories of the Edinburgh Festival Fringe. I went about six or seven times in consecutive years. Four of those years were with productions rather than just going to see other people’s shows.

When I was at university going to the Fringe was a major summer focus.
We were all-singing, all-dancing in the days before most companies were out on the streets publicising their shows. We were organised. One year I was the company administrator and I remember having to get people up after our late night binges to go out and drum up audiences. We had good audiences.

In 1985, the LA Times witnessed our routines in front of the Fringe Office. We got a big picture in their newspaper – it’s crumpled and blurred but you can still make out our striking T-shirts through the rain. 
I regret not being able to find my ZTC T-shirt now. I probably had cut off the sleeves from the start – that was the fashion then. I may have used it for painting in since. Perhaps it got splattered. I don’t know where it is. Not that I would wear it but it is a reminder of the songs we used to sing. Like For the Longest Time

We changed the lyrics to include show titles and venue names. The songs became our publicity vehicles. I still hum the tunes even if I don’t remember all the words we used.

Recently, at a friend’s 50th birthday celebrations, another friend and I started singing some of our bastardised versions of the songs. It seems like the tunes will be in our heads for the longest time. I know we performed at a venue called Celtic Lodge perhaps there was one with chapel in its name which would have lead to a version of this song: Chapel of Love

My memory of recent events may be bad but some of my memories from years gone past are the sweetest things.

(NB Nothing to do with this but I quite like the video! - Sweetest Thing)

Thursday, 11 August 2011

Five minutes early or ten minutes late

When I refer to my late mother it seems wrong. She was never late.
My mother was a stickler for punctuality. As a consequence she was usually early for things. So was my father. I think it was at my father’s funeral though it could have been hers that the congregation was gathered waiting for the coffin. Someone joked that my mother would have been appalled (and probably left) as the funeral was running late.

NB this was not an uncalled for joke. The congregation was filled with friends and family. I was chatting with them to keep spirits up even though mine were down. I like the idea that it was terribly wrong for either my mother or father to be late for their own funeral.

I have inherited their hatred of being late. Professionally, I tend to think I need to be five minutes early or I am ten minutes late. I recently read: “If you’re early you’re on time, if you’re on time you’re late, and if you’re late you’re left!” It was annoyingly written as “your” not “you’re” but, in work terms, I think the warning is good.

My BFF and her husband always used to be late for things. Recently she has been surprising me by arriving on time. Meanwhile I struggle more than I ever did to organise myself so that I am not in danger of being late.

I get terribly distracted. Despite having set a variety of alarms on my phone, e.g. ‘Get out of bed, washed, dressed’ ‘Get going now’ ‘LATE!!!’, I will delay because I am doing something. Then something else.

Yesterday MyMan arrived early. Well I thought it was early because it was sooner than I expected. However, I may have forgotten what time he was supposed to be coming. Or it might be that I had started watching a film that should have lasted my waiting time for him and then had been so often distracted I had to keep restarting the dvd. I loved that he wasn’t late. So often in the past boyfriends have disappointed me by their lack of punctuality..

Perhaps my desire not to be late is because I have little patience. Particularly as a patient. I may have blogged this before but I hate waiting. If I want something, I want it NOW! I don’t mean this in a petulant shopping way. It’s more that over the last two years I have had so many tests and often had to wait for the all important results which will determine diagnosis / treatment / progress. 

Tomorrow I will start waiting for my pacmans count results. I don’t expect them to arrive sooner than that. Blood test results are not like MyMan. They don’t usually turn up early. However, if they don’t come to me tomorrow they will be late. I hate lateness.

Tuesday, 2 August 2011

Keeping count

I’m the daughter of a mathematician. Both my brother and sister have superb mathematics A levels. My BFF is a maths specialist. What can I count on?

I can count but not rely on my pacmans. Today I got this text from my MS Specialist Nurse: Yr pacmans are improving well. But not up to restart levels. Stay of drug + can I do bloods on 9th august plse?

I had been thinking about going to Dublin to see my wonderful friend Nev next week. I hadn’t booked a flight yet but was going to look into it today, partly as a result of teasing and cajoling by MyMan on the phone last night. That’s a ‘you can’t count on me’ outcome.

I am counting down the days til the blood test. Then I’ll be counting down til the results but I can’t really count on when those will come given that I thought I would get today’s message last Friday.

The only thing we can truly count on is that we live and then we die. That’s not being morbid just a simple fact. And given that it is true, we should all make the living bit as wonderful as possible.

So I can’t book flights for Dublin but I can, as suggested by @Dr_Neil_ on Twitter, have “more rest, fine dining and afternoon trips to the cinema”.

He also pointed out the positivity of the observation my pacmans are improving which I overlooked in the annoyance that they’re not up to drug restart levels.

On 5 August Super 8 opens at the cinema (UK). Cowboys and Aliens is coming on 17th. This week I’m going to see Beginners with my BFF, admittedly not in the afternoon but it’ll still be a cinema trip. I’m considering a matinee viewing of The Tree of Life. The cinema element of my Pacmans Regeneration Campaign will be on in earnest. You can count on that.