Showing posts with label Glioblastoma. Show all posts
Showing posts with label Glioblastoma. Show all posts

Monday, 19 March 2012

A bad decision or a way to de-stress?


I really don't know if it was a bad decision or not.  I didn't plan to do it and I suppose even though I knew it was there and what was in it but I just did it anyway. I suppose maybe my sub conscious needed it.

I was thoughtful on Sunday morning.  I realised I needed to earn more.  This isn't through want but necessity.  As a rise at work is highly unlikely, the chances of a lottery win remote and there are no reserves to draw on then I need to work more. Life back on the road working the cabaret circuit again is not really an option, my costumes have gone and, whilst I am fortunate enough to have the skills and tools to make more I really don't want to.   I'm not sure what I'll look for but I need a part time evening and/or weekend job.  

Following on from that train of though I busied myself ironing and sorting and photographing stuff for eBay.  This, between doing chores such as sorting the washing.

It was then it caught my attention.  Steve's memory box.  It wasn't his per se but it is full of his stuff that I've put together in a nice red leather trunk since he died.  That is what I was wondering about in my opening paragraph.  

I sat on the bed and opened it.  I started to read cards he'd received when he was first admitted to hospital, that's 18 months ago now.  So many get well wishes.  Then the tears started and I couldn't stop them and, I couldn't stop reading either.   I didn't read them all, I got side tracked with photographs, photos of Steve as a child, with his Mum, his Granny, his Dad and Brother too.

I'm sure they are lovely memories for them of Steve but for me I just see the smiles and wonder what it's all about, life that is.  The smiles give no indication of the future how cruel it can be.  It's tough and there are a lot of questions.  Some people find answers in religion and others have different reasoning.  I don't need answers though but yet I still wonder why.
The picture is Steve and his Aunt.  She passed away on New Years Eve 2009 with Cancer.  Stephens Uncle was also claimed by Cancer a few months before he was born and then My Steve too.  Why do bad things happen to nice people?  Obviously I'd be biased toward Steve but his Aunt was lovely too, so warm and friendly and a real lady.  Obviously I never met his Uncle but I have no reason to suppose he was any different.  There is no answer though, these are just things that make me think.
 
After I'd shed a few tears I got on with what I needed to do and I sort of felt better. A lot less worried with a better outlook really.  I was still emotional and thoughtful but it made me realise that despite my positivity and polished facade sometimes things do still get to me.  Perhaps my guilty feelings about Mothers Day and thinking about other peoples losses was what did it.  For the most part I can hide from my own feelings but am often moved by other peoples journeys.  Still, I suppose it did me good to have a reality check.
 
Today has been a busy day, there's lots happening at work so I've been concentrating hard on the work I've been doing for most of the day.  I've enjoyed it, oddly.  Yes, I suppose deep down I am one of those people who says they would still work even if they won millions on the lottery.  I may do a different job or work in a different way but I'd struggle to do nothing for a sustained period of time.
 
Anyway, it's time for bed, reasonably early for me too.  I must be getting old!  Oh, and before I sign off please share my blog, if you got here via Facebook or Twitter please Share or Tweet.
 
Thank you and Bye for now,
M
 
 
 
 
 
  

Monday, 9 January 2012

New Year and beyond

Looking back new year seems to have been a long time ago.  I was so worried about it but, in the end it worked out OK.  My parents spent most of the day out and about so I was left to my own devices.  I busied myself during the day and then after a shower decided to go out for a wander.

I wanted to buy some Issey Miyake aftershave for myself.  It was a favourite of Steve and I, I wore it before Steve met me but he liked it and we wore it on our wedding day and the funeral director made sure Steve had a "squirt" once he was ready for his final performance.  It's odd but smell evokes so many memories.

I recently re read Steve's blog from last Christmas and he mentions the same then.  I bought him a fragrance which reminded me of when we first met and he bought me more of the fragrance I was wearing when we met.  Happy memories refreshed by just slight hint of fragrance.

Anyway, long story short it wasn't in the sales so I didn't bother.  I can buy it at full price anytime to I will wait a little.  I wandered through the shopping centre and didn't buy a thing.  I've lost the desire to shop, there's not a lot I need and nothing I need urgently.

I got home and relaxed with a nice cup of Earl Grey tea and then, as darkness had fallen, I wrote my letter to Stephen on a Chinese balloon lantern and then lit it and watched it float off into the night.  I was tearful but, felt so much better for doing that.

I opened a bottle of wine but, failed to drink more than two glasses.  I saw the new year in with a cup of Earl Grey.  I watched the fireworks at London on the TV and felt the "BOOM" a lot closer to home as our neighbours set off a load of fireworks.

On new years day I relaxed.  No agenda, just a whole lot of not very much and that was the same until I returned to work on 3rd January.  it was good to be back to work.  Not because I like it there but because I was just pleased to be back to normal. 

The decorations came down shortly afterwards and things have got back to how they were before.  The numbness has returned and life is as normal (or abnormal) as it was before.

I've had a bit of a thoughtful day today.  I read today about another young man who has lost his battle against a GBM, he leaves behind a wife and two children under three years old.  This disease really doesn't discriminate about age etc and doesn't care how many lives it affects it just does it's thing.

I really feel for anyone facing the diagnosis of a GBM and the more I learn about them the more I feel this.

On a different note, I learnt at New year that a dear friend of mine has been awarded an OBE in the Queen's new Year honours list, she is now Melanie Bryan OBE, read more about her here: http://www.melaniebryan.moonfruit.com/

Apart from that I don't have a lot of news, I do have a document to upload to Stephens website, http://troubleonline.co.uk/ but will do that in the next few days and write some more.  I am sure there was more I needed to write and my thoughts have been more complex than I have mentioned but right now I am in a lighter mood so I won't dwell on that for now.

I'll write soon,

xx Mark xx

Monday, 21 November 2011

Significantly different

That’s how things are right now. It’s been quite a week since I wrote last. A long and difficult week. I would say it’s possibly been one of the most difficult weeks of recent months and I don’t understand why. I’ve had a few worries, not much more than usual though.



It hasn’t been a particularly busy week, I have kept busy but under my own initiative in the main not under the direction or request of others. I am starting to become aware though of this building stress within me, I am not sure if keeping busy is helping distract me from the thing that’s bothering me or if it’s adding to it. I appreciate being busy though as I can absorb myself in the task at hand instead of sitting and reflecting, perhaps that’s what’s making the blog difficult, having to reflect, all be it for a short time. I am forcing myself to think about things. I still recognise it’s helpful though to me and to others too and re-reading Stephen’s blog of this time last year reminds me of that.



Reading Steve’s blog of November 21st Last year I came across the following paragraph:

I have thought about Mark and what he will do when am not here - we often


laugh that it will be me getting phone calls from the police station saying


that they have picked him up in Tesco shoplifting etc wearing a big Floppy


Hay at the age of 70 - that's our plan you see - he goes slightly erratic


and I go sort him out when were older. Obviously this plan has now changed a


little bit, and I'm doing erratic and odd things and he sorts me out.

It got to me. Yes, I used to enjoy being slightly eccentric, adopting a fun a jovial outlook on life and trivialising things to make them more palatable. All of that has gone. I recognise that person but I have not seen him for a long time.



Back to the present. On Friday, after a trip to Liverpool with a friend I called in to The Trafford Centre to have a wander through the shops, More than anything it was just time out, wandering around aimlessly I wandered from one end to the other. I got to John Lewis and as I walked through the homewares department I saw a cushion on a bed in a display. It was very simple, Grey and Red and had a ‘patch’ embroidered on it which said “You & Me”. It was lovely. I approached the display to take a closer look and then it hit me. There is no “You” in my bed, there is just a “Me”. I fought back the tears, just as I am trying to do now.



Such a beautiful gift and nobody to share it with. As I walked the very long walk to where my car was parked I seemed to pass an endless number of couples, Gay couples, Lesbian couples, some clearly mature relationships and some clearly new but seeing each one gave me a punch in the gut, making me remember loud and clear what I have lost. I know our family and friends have lost too but life for them is as normal. I am the one waking up alone every morning and getting in to a cold and empty bed at night, as I know many others do but every morning I wake alone serves to remind me and, every night I slip in to a cold bed does the same.



Friday was difficult



On Saturday I spent the whole day busying myself. I started wrapping Christmas presents. On finishing the first the person for whom the gift was intended sent me a SMS message. As I completed wrapping the second the recipients arrived at the door. It was an odd coincidence and I can’t help but think Steve had some sort of influence there. The third, fourth and so on did not generate any SMS or visits etc, perhaps for the best and I continued to busy myself being creative and wrapping presents.



On Sunday I did the same again, more wrapping and more creativity. Some gifts have been parcelled up to be sent abroad, they will go to the post office this week.



Well today has seen the start of a new week. I have a busy week this week at work but a few things to look forward to throughout the week. Most importantly though I’m looking forward to the weekend. Time is whizzing by lately. Christmas is looming, beyond that there’s New Year. That’s a whole other blog entry so for now..... Goodnight and thank you for being so patient.

Sunday, 9 October 2011

A half week update

You seem to be getting updates every few days now.  I will eventually get back in to the swing of it I guess.  Lets start with Thursday. Firstly the same day last year had been Steves first visit to Christies hospital. Here is his blog, click here I remember the visit and I remember how nervous he was, I was too but I kept him calm.  The hospital is quite pleasant really, not like a general hospital, it felt more friendly.  Steve just accepted everything that was told to him but, on this visit we were also asked about "harvesting sperm" just in case Steve wanted children after his treatment.   We explained that gays have still not evolved into child bearing creatures, the nurse giggled and, although we understood she was asking a serious question we politely told her that children had never been a consideration for us.   Anyway, this Thursday as I said I went to see Top Hat with my Mum.  It was a good show.  Not the same as a musical but really good and Tom Chambers who was in Come Dancing played the male lead.  Top Hat was filmed in 1935 and starred Fred Astaire and Ginger Rogers, a classic black and White film.  Apart from anything else it was nice to go out with my Mum. Friday was an ok sort of day.  Work was  busy and stressful, I am conscious that my attention span is still less than it used to be and constant distractions from people in the office and others coming in and out of the office only distract me more so all in all it is annoying me.  I guess I will get back to how I was eventually. On the same day last year Steve had been to have the first part of his mask made for his radiotherapy treatment.  He was nervous about it as he was a little claustrophobic but I was there with him in the room which made him feel more relaxed and afterwards he said it hadn't been anywhere near as bad as he feared it might have been, see what he said click here http://troubleblogging.blogspot.com/2010/10/another-day-over.html Friday evening I popped to the shops, I needed to collect a gift I had order for my Sister for Christmas but when I got there it had not arrived.  I called the order line to check on dispatch date and was told it had been delivered and signed for at my home address!  There was me collecting from store and they had sent it to home.  It was there when I got in.  There's not a lot of stuff to buy now for Xmas which is good.  I might start wrapping soon... Woo! I spent Friday evening curled up on the sofa with a bottle of wine.  It was nice to chill but of course it's then that I miss having Steve around to snuggle up to. Saturday was a busy day.  I got up and relaxed for a bit then went to do my ironing ready for my next gay road trip.  As I'm travelling with friends and they have quite a small car I needed to pack smart and take as little as possible.  I think I managed ok. In the afternoon I got showered and then went out to see another friend I have not seen for some time.  It was good to catch up.  He's due to move soon so he took me to see the new place too.  It looks nice, it's a 1 bed flat but is a really good size and looks like it's in a nice quiet area.  I'll see him again when I get back. On this day last year Steve had been to Christies for an MRI scan.  I had a meeting I couldn't get out of with a friend about a bid she was submitting.  I met Steve later in the day, I remember the feeling of relief seeing him after he had been out alone for the day.  I would never have worried before but he had never had Cancer before.  Here's his blog http://troubleblogging.blogspot.com/2010/10/today-has-been-good-day.html It was tough for me to adjust to the realisation I couldn't wrap Steve in cotton wool and protect him.  I am not sure he ever realised how tough it was to do but I did it.  I hope he didn't notice how much i worried, if he did though he didn't let on.  I vehemently defended his independence when others told him he can't or shouldn't and I know he did appreciate that.  He wanted to live his life as normal as possible, that was truly inspirational to me and many others. Last night, after visiting my friend I popped to the supermarket and picked up a few bits before heading home.  I made a delicious meal and supped a bottle of wine watching X  Factor and meddling with my iPad.  I trundled off to bed at a reasonable time, well, just before 1am.   This morning I got up, packed my bag, bundled my eBay stuff ready to go tomorrow, got ready, had breakfast and waited to be collected.  We set off around 10.30 for our big gay road trip to Wales. Steve and I booked this trip in February for us and two friends.  It was a gift for them for birthday and wedding anniversary, we are staying in the centre of Cardiff for 5 nights and head home on Friday 14th.  For Steve and I it was a chance to be tourists as well as for me to meet up with some old friends. The reason we wanted to head home on 14th was because it is our wedding anniversary.  This year would have been our 5th.  We were planning on booking in to a hotel nearer to home for 14th and 15th so we had some time out alone.... Instead I will just be alone. This is the last trip I need to make that Steve and I had planned together.  The only other things I still have left to do that were planned with Steve is wrap and deliver the Christmas presents we had already bought.  Steve never stopped looking forward and planning for our future, he and we lived every minute of his last nine months from diagnosis to death to the best we could. I have read Steve's blog again this morning from this day last year, t seems we had a lie in last year, not this year though, here's what he had to say about this day last year, http://troubleblogging.blogspot.com/2010/10/sleeping-in.html Right now I'm sat in the car typing this.  I like not driving, it means I can make more use of my travel time!  Hope to catch you soon, Mark x