Saturday, 30 July 2011

Being unreasonable

That is how I am being made to feel by people at work. They came to see me on Thursday, before I had blogged about the previous few days and that was what my reference to it being a Shitty day was all about.

I understand they are concerned or missing me, (not me per se but the work I do, I really don’t think they give a toss about me personally). They said as much when they put pressure on for me to return ASAP.

I feel I have done really well. I have started to look for the positives in the day instead of accepting how I feel when I wake up. I push that nagging pain to one side, those tears welled in my eyes are barricaded in and the anger and hurt on the tip of my tongue is swallowed hard. Yes in plain terms I put on a brave face, but my tolerance levels are at an all time low my concentration is lacking to say the least and well.... there’s lots more to say but I won’t.

When I received a letter telling me they were coming to visit I felt my stress levels go through the roof, I knew it was coming and had expected it but I didn’t expect how I felt. After an hour of what felt like an intensive grilling, (It felt like they were trying to suss out if I really am ‘that’ upset about losing my Husband), it seems I failed the “test” as I have been asked to see the work doctor. Not a problem if I had something physically wrong with me but how beneficial will it be for me to trawl over all those things I have put to rest in my mind. Not least how it felt living, no, existing for Stephen’s last nine months with a death sentence hanging over your head, yes, it was over my head too, I suffered the death of my partner and my relationship with him and when he died I feel a huge part of me died with him.

I am expected to relay this to some stranger. It feels like work is saying that they cannot accept that I would be feeling this way after SO long. Six weeks, is that a long time? I don’t think so not when you consider Stephen will be dead for the rest of my lifetime not when the bond we shared was SO strong. We loved spending every minute of every day together, not like some couples who spend as much of their free time as possible outside of work apart from each other.

After that meeting I had an email from work, more on Thursday and Friday. Again, it sent me stress levels through the roof and I just had to go and be alone making myself busy just doing things so as not to think. Oh, the best bit was, “Are you planning to return to work?” What a daft question, you don’t get a cash lump sum to last you the rest of your days as a booby prize for losing your husband, the bills still roll in and they still have to be paid but now you have to do it with one wage not two! Of course I am going back, I loved my job, the diversity of it and the satisfaction of knowing you helped make a difference that I guess most charity employees get; I desperately want that normality back and that warm and fuzzy feeling of knowing you are benefitting others. I want it more than any.

Another comment was that “perhaps you should ask about medication.....” What? Fill my body with drugs to mask what I feel so when I finally stop taking them I can experience the natural, (yes grief is a natural and normal process), so I can experience the natural pain then instead and suffer what in my eyes would be a setback? No, I want to deal with this now and move forward, not hide it and move over.

Insensitive and uncaring are huge understatements. Maybe one day when they or a loved one are in my position they may get a slightly better understanding of how it feels and then I hope someone tells them that six weeks is enough time to get over it and get back to normal.

That it about work, it’s stressing me just thinking about it and I don’t want to go down that slippery slope.

The rest of Thursday was difficult to say the least. I ended up driving a friend in to town on Thursday night for her to photograph at an event. I had agreed to it last week when I was having a good day and didn’t want to let her down. I am forcing myself out of the house and in to places I don’t want to be, really to try and accelerate my progression. (With work’s attitude in mind it’s probably for the best too). It was OK, I was brutally aware of my single, (widowed) status, but she’s a caring mate and kept an eye out for me. It was tough but I lived to tell the tale and I hope to go and do other things with her in the future, she’s got a great sense of fun and she cheered me up a lot.

Yesterday was crappy too, as I said the email from work first thing set my stress through the roof. I busied myself doing other things. A friend came over yesterday afternoon then, as she was leaving two more turned up and then another. It was nice to see people. I ended up being up till after 1.30am again chatting but it was nice. I suppose an opportunity to forget for a while but remember nice things too.

The blog wasn’t done last night as I didn’t feel like it, no more complex a reason than that. I was late to bed again though.

Today is a glorious day. What shall I do? No plans no agenda. Perhaps a walk with the camera later? I feel the camera gives me an excuse to go out alone, I don’t look like such a ‘Billy no mates’ with that in my hand. I guess I look like a geek instead. I guess I need to force myself out and in to real life again, quiet places are fine, busy places are tough. I’ll decide after a shower.

Thursday, 28 July 2011

A HUGE update

Here goes. I’ve not written for a few days so you’re in for a HUGE update.


Monday was a fairly good day. Well, sort of. You may recall I’d had a call on Saturday from Christies Hospital to go and collect Steve’s belongings which were there. I combined this with a trip to Steve’s work to drop off his computer which was brought here when he started “Working from home”. The work visit was first and was OK; I only saw Steve’s boss and we chatted a little. He’s a nice guy and Steve got on very well with him and liked him not only as a person but as a boss too.

The Christies visit was less pleasant. I had to go in to the critical care unit where Steve had been treated just before he was transferred to Hope Hospital. The nurse offered her condolence etc and I recognised her from when I was there last. I collected his bag of stuff. On the way out I bumped into the Doctor who had seen Steve on his last Chemo run, we chatted for a while but, she also said how completely shocked she had been about Steve’s passing, ESPECIALLY since she had seen him on 1st June and he died just 2 weeks later on 15th June. It was nice to talk but she understood when I told her I hope to not see her again in a ‘medical’ capacity.

After that I needed some air and a change of thought so I picked up a friend and we went to Heaton Park for a walk. I went a few weeks ago and ended up having to come home when my battery run out on the camera. This time my battery lasted a little longer but I had not charged them so I ran out of power again but I didn’t stress about it. We ended up sitting alongside the duck pond for a while chatting, it was nice to have a proper chat.

After that I drove him home and then called in at home before A friend arrived from Scotland to stay for a few days. It was nice to see here and to be able to chat. It wasn’t purely social, she had business to attend to here but all the same it was nice to catch up. We ended up talking till way too late but, it was good to do. I ended up though going to collect her from Knutsford as that’s where she had been left, it’s a long story.

Tuesday was OK, I took T to look for a scooter, and we found a really decent one quite locally. It will give her more independence, freedom and the ability to be out of the house for longer periods of time, hopefully free of pain. After that we called home again before heading off to see another friend about a different project. It all seems a bit hush hush but we’re trying not to tempt fate by bleating on about it, fingers crossed.

Tuesday evening Steve’s Mum visited as usual and again T and I spent way too long talking till far too late but again, it was good.

Yesterday was an odd day. We got up late because we’d gone to bed late. After T finally ;-) got dressed we went out. We had to call in to the bank first then went for a drive to Marple to the canal and spent a few hours watching the narrow boats navigating between locks 12 to 16. It looked like hard work for them. It made me think how realistic it is going to be for me to live on a narrow boat and cruise the network alone. The lock needs to be opened, and then the boat driven (?) in to the lock, the lock gate closed behind then wait for the lock to fill before opening the next gate, driving the boat out of the lock and then closing the lock gate behind you and then on to the next.... multiply that process by 16 and you can see how tiring and time consuming it is all likely to be, bearing in mind each lock takes about 20 minutes when at least 2 people are operating it.

I don’t want it to alter my decision but it certainly is a leveller. There’s a lot to consider. Knowing me though I am so stubborn, (like Steve) that I will probably just do it but curse the aches and pains (and exercise) involved!

After that T and I went to the Trafford Centre for dinner, we had a Thai meal and it was lovely and we then went to watch the last Harry Potter film. I guess it was significant for us both as she had read Harry Potter to her Fiancée as he lay critically ill. For me, I hadn’t thought about it before but, Steve and I have been to see every film together. I had read the books but Steve hadn’t. I refused to tell him the ending of each part though so, I realised last night Steve never knew the ending to the story. A journey Steve and I had begun together, watching a series of films, and he never got to the end.

I spent a lot of the film with tears running down my face. The 3D glasses were a good disguise. The tears flowed regardless of what was happening in the film, the film didn’t make me cry. Stephen wasn’t seeing it with me and that is what upset me.

I enjoyed the film but I had never considered going to the cinema to see a 12 rated film could be SO traumatic and make me cry almost the whole way through it.

On the way home T and I spoke about loads of stuff but the subject of music came up. She explained how she associates pieces of music with people and places. I asked what mine was. She said it is a piece for Steve and me and invited me to guess. Show tunes or Pop Music were nowhere near so I gave up and asked what song, she told me, Neil Diamond. I immediately thought or “America” or “Love on the rocks” and was puzzled. She told me it was “Forever in blue jeans”. It hit me.

I started crying straight away, the first verse says it all and I remembered straight away the time and place and events and why that song had become significant to us. I re-posted Steve’s blog last night with the song.

The first verse reads:

Money Talks
But it don't sing and dance
And it don't walk
As long as I can have you here with me
I'd much rather be
Forever in blue jeans
Forever in Blue Jeans

I told Stephen it was relevant to us, sod the drag, sod the stage lights and the glitz and glam and fun and sequins, wigs, shoes, parties, laughter and travelling, I just wanted him. I STILL only want him but, I know it will never be, not in this life at least.

I’m not going to write much about today, it’s been a Shitty day so far, hopefully I can turn it around but for now I think I have written enough.

Until next time xxx Mark xxx

Forever in blue jeans...

Tonight I have just been reminded of an old blog post of Steve's, I've copied it below, it was earlier this year just as we were going away.  Have a read and listen to the song.... hope you enjoy x

Away - Sunday 13th Feb 2011



Well we've done it. We managed to get out of the house, and we were only 34 minutes behind schedule. Which for us is brilliant.



I realised earlier that I haven't updated all weekend so here goes with a big update.

Friday I was in the office and managed to get loads done, I actually felt part of the team again. After work I went for coffee with my friend Dr Jon which was good as we just watched the world go by and had a good catch up.

Mark picked me up in town and we went shopping for dinner. Marks good at his mixed grills. From there we just veged in front of the tv watching DVD's and I did more on our diamante throw - which is slowly getting there...

Saturday we were up and dressed pretty early. I did the post run for the last of our weekly sales. Everyone should have their purchases by monday hopefully.

Saturday afternoon was spent photographing more stock which will be uploaded on Thursday - see even when were away were working.... I even have a box of tights in the car ready for this weeks sales....

Last night we did our packing and ironing ready for today, nothing like being organised. It was then veg on the sofa and more diamante and Mark with his ebay pictures.

This morning we were up full cooked breakfast and load the car. Were now whizzing down the motorway on our way.

Don't worry about the cats and the in-laws We've left them loads of food and they are house trained - the cats just please themselves :-)

We just decided whilst listening to Michael Balls Sunday Brunch show that Neil Diamonds Forever in Blue Jeans is our new song because he would rather have me and have to wear blue jeans than not to have me and have sequins.... Soppy sod. But it is really relevant to us.

Anyway will sign off and update later.
Steve x

 http://www.youtube.com/watch?v=3D27dmGp2zU


Monday, 25 July 2011

and so to bed...

Almost. I was going to head off then remembered I didn;t do a blog yesterday and haven't done one today so I guess I ought to write.

I'll start with yesterday.  Not a bad day really, I got up early and took the old car back to the garage, I wasn't sad to see it go at all, like I said before it signified Cancer to Steve and, since he had said that it did to me too.  We only had a big car in case he needed to fit a wheelchair or scooter in etc.  Anyway, enough of that, it's gone and, whilst it was a good car etc I had no complaints of it at all I am still not sad to see it go.

When I got home the postman had been and brought the decal I had ordered for the new car on Thursday evening, a pretty rapid response I reckon so I was very happy.

I loaded the car with a few bits for the charity shop, the eBay stuff which needed to be posted, yep, I am still plodding on with Steve's eBay empire although a lot slower than I was before but I am sure I will find the motivation soon once other things have fallen in to place also.

Once all sorted off I went, I took the camera as I wanted to picture the car on grass, I think cars look nice with a grassy backdrop but, the parks I chose had events on and, long story short I didn't get to find a grassy area so I went for an 'urban' look instead, the pics are below:


I did of course take a picture of the decal too, I had decided to give the car a name on Thursday evening and seeing as the car has so much attitude I decided it could only have one name..... what do you think?


It made me smile and I think it is appropriate too and I am sure Steve would also.  After this I came home and started working on filling out a few forms.  I'd received a text from G telling me he'd be picking me up at 7.30 to go for dinner and drinks at theirs.  I didn't argue.  It's so much easier when someone else makes decisions, normally I'd not like or let people make decisions for me nut at the moment i am sort of going with the flow where possible.  Now you know why I didn't blog.  I was collected at 7.30 and didn;t leave their house until 3am, I walked home and got home about 3.40 ish, off to bed then for a snooze with no blog, sorry!

Today has been another busy day.  Up this morning and finishing off my forms.  When those were done I sorted the spare room, the eBay room, T is coming tomorrow for a few days so I needed to at least make it so she can get to the bed. 

After that I finished a scrapbook I had in mind for Steve's Granny, it had lots of pictures in but not only of Steve but his stage alter ego too.  Granny loved the cabaret stuff, we performed for the residents at her wardened flats a a few times in the communal lounge.  they all loved it and she was always really proud to be stood there, all 4ft something of her next to Steve's 7ft something, (complete with high heels and wig), and introducing her Grandson to her friends, the fact he was wearing a sequin gown and a huge amount of bling never bothered her.

Once that was done I got showered and set off for Granny's place.  It was nice to see her, she was really pleased with the scrapbook and she could tell which numbers Steve was performing from the costumes.  I was pleased she liked it so much.

I was going to call in on Steve's Uncle on the way back but, judging by the cars on the drive he had company so I thought it best not to call in unannounced.  I'll go and see him soon but I didn't want to interrupt.

This evening I have been busy sorting paperwork again, I had a long conversation with J after he finished work around 11.30pm and then just finished the last few bits before I though of heading to bed..... until I remembered to do this of course.

All in all it's not been a bad weekend, I have managed to go now 5 whole days which have all been pretty good.  I'm not counting chickens before they are hatched but I hope to see more good days coming around the corner.

Not sure if tomorrow will be a good day though.  i received a call on Saturday from Christies Hospital where Steve was admitted initially.  The critical care unit have been in touch to say they have a bag of Steve's possessions there which need to be collected.  It will be his washbag and pyjamas etc but the thought of going back to 'that' hospital and 'that' ward where we received SO much bad news in such a short space of time is very daunting.

I also have Steve's computer here which his works brought in for him to work from home, I think I will take that back tomorrow too.  They are only little things I guess but they are still significant markers on the route to finding a new normal.  I'm not going to worry about it for now, it's bed time and I have nice clean crisp sheets to get in to.... mmmm I love that feeling.

Goodnight and see you tomorrow.
Mark

Saturday, 23 July 2011

WOWZERS

I know, I have turned in to Batman or Robin, well I would look as good as them in Lycra I'm sure so therefore I can say that.

Yes, I'm on a roll, (although I am not being negative when I say I don't expect it to last), this is the third good day in a row.  I have actually had a few "reflective" moments today but, they didn't turn me to a heap of wailing jelly, they made me feel warm, (and tearful) but in a nice way if that makes sense.  I have REALLY missed Steve today, he would have enjoyed the spontaneity of the day, naah not enjoyed, LOVED but, I guess I have to keep that in mind and keep going forward.

This morning I got up and tidied our bedroom, I did some washing, Steve used to do it all the time as he liked making sure the washer was busy  and I tidies our lounge.  Nothing major just putting stuff away.  I said the other day I was ready to put some stuff out of sight that had been out since the funeral and I have, theres a few things been put away, it doesn't feel like there is less of Steve here though so that is good.

After that I had a shower as the estate agent was due at 2pm.  I managed to get showered and dressed after I had done everything and was sorting some stuff out upstairs when he came.  I sorted all that out and then decided to meddle with the car as my new phone cradle and replacement button arrived for the handsfree set.  An extravagant £11 in total and it works perfectly, I am V-happy and I am now inclined to agree with Steve that maybe he has "rubbed off" on me and I am turning into a techno geek. 

Talking of Steve I thought about his this afternoon too, I was sat in the car outside the house talking to 'T' (pot)  about me and about Steve etc and there it was again, another rainbow.  'T' said that's Steve saying he's happy because I sorted the handsfree myself, I think I agree, usually I would have left it to him, not because i couldn't do it but because I couldn't be bothered and he could.  It was nice to see though and it made me smile, and this time without streams of tears down my face.  Like a bus, you wait for ages for one and then I get two rainbows in a week... BIG SMILES!

This afternoon two friends called around, J was coming anyway and I knew D was planning to come but they had evidently spoken and arrived together with D's two dogs.  I was lovely to see them.  I love dogs and would love one on the boat with me when I get it but two cats a dog and me might be a bit much.... but, never say never.

We had a coffee and had planned to go for lunch but, with doggies in tow plans were revised and we all went to D's for dinner.  It was lovely, it was they type of afternoon Steve would have loved.  No plans just deciding on the go and going with it.  Dinner was de-lish and, I wouldn't just say that but it was, good grub, good friends and good wine.... yeah forgot that bit, I had a small glass with dinner as I was driving, something I never usually do but it was lovely and, above all, it was nice to have a drink and not drink to get drunk as I guess many of us do when we are younger.

I came home and have been on the PC most of the night, not doing what I needed to but still it's been nice.  I am not going to start what I need to now as I have had a few Bacardi's now, well, two actually but they were very large ones.... oops.

I am quite excited about tomorrow oddly, my car goes back to the garage tomorrow, I say goodbye officially to the car Steve and I had and officially hello to the new one.  the new one is not as new as the old one but she is lovely, an absolute pleasure to drive, (she's put the fun back in to driving) and it is more the sort of car Steve and I would have liked, smaller, sportier and fun.  We always had big cars, when we had the 4x4 it wasn't because we wanted or needed a 4x4 but we needed the space to get out DJ kit around plus suitcases of costumes.

With the next car again, we needed the space for ferrying the kit around and with this car, a Peugeot 3008, we got it because it was practical, it could comfortably fit four people and the boot was big enough to fit a wheelchair in even if we had 4 people in the car. 

We didn't know how sick Steve would get or if he would need a wheelchair but we thought about it just in case.  Steve hated the thought of a wheelchair but was quite sensible and keen to get a car that would suit our needs whatever they may have turned out to be.  He never needed a wheelchair, with hindsight we could have got something sporty and had a more fun car but, we were being practical.  Hey though, it's not a big deal. 

I guess you can see now why I am excited about getting rid of it, it symbolised Steve being ill and us planning for that.  It wasn't a car which reflected two young(ish) guys with no children to worry about and just enjoying life.  Although Steve loved the car he hated it too because of what it symbolised and the reasons behind it's purchase.  I guess tomorrow is a significant day too, it's saying goodbye to another marker or reminder of Steve's illness and how it affected and changed our lives and how it continues to affect my life.  Today has been a good day though and if I keep thinking of the positives about the old car going and the new car meaning a cancer free life then hopefully tomorrow will be a good one too.  fingers crossed.

Well I am going to bed, it's 12.56 here now and I hope to be tucked up in bed by 1.30am .... here's hoping!

Goodnight xxx

Friday, 22 July 2011

A good habit to get in to...

Today has been another good day!  I know!  Shock horror and all that.  It was good insofar as I didn't feel so down today.  The sun has shone for most of the day, well for long enough for me to put the washing out to dry after being lulled into a false sense of security just before the heavens opened and the rain came down! 

I got up this morning and pottered for a bit, I cleaned the car out, took it for a wash and then came back to polish it, stopping off en route for some cat food and the obligatory new air freshener for the car.

This evening I called round to see a friend and we went out for a drive.  We weren't out long but I suppose it beats sitting around with a brew.

Tonight I have been sat here reading, reading stuff on the Internet but reading all the same.  A friend (M) said to me a few weeks ago I should  consider writing a book.  I initially thought no but, I guess my life is quite unusual in some respects.  If nothing else it will be therapeutic to write.  I've looked in to it and, the first thing I need to do is map out my chapters.  I guess if nothing else it will give me something to do, especially as the winter nights approach, we've had the longest day now you see so we're now on the down hill slope to winter.  I'm not looking forward to that.  Steve and I used to sit in and snuggle on the sofa in the winter.  I guess this year I will need a throw or a blanket to snuggle in to.

The other positive thing today is that my olds have celebrated their wedding anniversary, I think it's 38 years, either way it's more years that I am old if that makes sense.  38 years eh!  I was late with their card, I didn't forget I just remembered late.  They didn't bother with cards though, they said they didn't feel like celebrating this year.  I understand that but I know Steve would have got them a card and would want them to celebrate too  as it's a decent milestone.

that was one of the things Steve liked about my family.  He said on more than one occasion how he loved that special days and dates were made to feel special.  I am sure he had a fuss made for his birthday as a child but he said as he got older it just became another day.  That was until he met me, he loved birthdays, Christmas, anniversaries even valentines day because he knew I would usually get him something, sometimes something odd, sometimes useful but he just loved the surprises.  He kept most of the cards I ever sent him.  When I went in his bedside drawer after he had died I found a lot of cards from me to him there, he was very sentimental really, odd but some of those cards are years old but he had kept them close to hand.

I'm going to miss spoiling him this year at Christmas, I loved how his face lit up like a child's because he had no idea what he was getting.  I guess I am glad thats one habit he didn't pick up from his Mum.  She opens her presents straight away, regardless of how early they are.  She will look at them and then close the package back up,  Whats the point?  Theres no surprise then.  Steve loved surprises, I guess I do really but Steve had a special way with surprises.... need I say more than "Star"?!?!? (go back to my blog around mid June onwards if you have no idea).

Well it's time for bed now, I was good yesterday and got in bed a whole hour earlier than the night before, it was 2.30 am, I did meddle with the phone for a bit though and will probably find something to do tonight too but, at least I am in the right place.

Before I go, if you use twitter then follow me at:  adifferentmark I guess then at least there is a "Chance" of a 2 way conversation.

Goodnight xxx

Thursday, 21 July 2011

Naked Boys Dancing and Free Chocolate

Today has certainly been a different day, in the main because I have been out for most of it I guess.  For the past few weeks I have been in for the most part of most days, (or it certainly seems that way) but, today has been different.

I was up at a reasonable time this morning despite still being up till 3.30 am meddling.  I am planning on going to bed quite soon so hopefully before 1.30 am today.  I have not thought about whether I am still avoiding bed or if I have now just got into a routine of late nights and minimal sleep?  I don't know but I guess I ought start to go to bed at a reasonable time sometime soon.

I had to go to Wigan today, there were a few reasons none of which need to be explored here but I did get to see a friend there too and have a good old natter.  We are as bad as one another and can both talk for England but we just flow from one thing to another.  Steve used to laugh at me, he could tell who I was speaking to just by hearing one side of the conversation but, I guess that is because he knew me so well.

After leaving the house around 2pm today I got home just before 9pm, that's unusual for me at the moment as I said, most of my time seems to be spent at home these days but, today has been a good day, I've not had a "Steve" focus to the day and it's not felt bad doing something for me.  In fact this morning seemed OK too, I was thinking about putting a few things away.  Just stuff which belongs to Steve which I have kept around since he passed away, old pictures, (in a box; but close to hand),  some clothes and bit's and pieces really which were his.  I think I am now mentally in a place where these can be put away.  Out of sight, NOT out of mind but I suppose it means I can reduce the clutter around me, something Steve hated and tried to rid us of, (even though he was a hoarder, a gene he definitely got from his Mum).

I now have a sense of busy-ness, there seems to be a lot to do.  By doing it I will keep my mind active but also perhaps just be able to move on mentally from under the big black cloud and make my way toward the end of the cloud and moving toward those nice fluffy white ones before I get to clear blue skies and sunshine.

Well not a lot more to report, like I said it's been a good day.  Last Wednesday was a good day too, I had "things" to do on both days though so I doubt there is a Wednesday connection just a "being busy" connection.  Hmmm, good job I have lots to occupy my time tomorrow, there's another estate agent comimg on Friday, this one seems to be a little more pro-active in finding punters.  Lets see what he has to say but I reckon we'll be reducing the price and trying to get things jogging along pretty soon, our boat is calling...

Well goodnight again oh and sorry about the title, I just thought it looked a little more interesting than "A Good Day" but, if I were to ever have a day like that I can assure you I wont be writing my blog until both are long gone, well, you need to make the most of these things which reminds me.... theres chocolate in the cupboard which had a "best by" date on it of April some time... they tasted OK last week so should last a little longer.

Well TTFN,
Mark x

Wednesday, 20 July 2011

A busy day of updating

Phew, that's all I can say!  I have spent most all of today at the computer.  My first mission today was to update Steve's website and get the interviews up there that he did for www.gaydio.co.uk a few months ago.  I started on that train of thought when I updated the site after Steve died but I had techie problems and I needed to be in the right frame of mind to do it.

At the time I wasn't able to split the audio up but I got some help (thank you Tpot), and they have sat there on Steve's computer ever since, just waiting for me to do something with them so now I have and they are here http://troubleonline.co.uk/#/steves-thoughts/4553483178 if you want to listen to them.

Whilst you are at the site be sure to take a look around, I have added a few more pages including a piece on radiotherapy masks, it is something Steve wrote but I have just added pictures.  It's odd seeing his writings, I can just hear his voice reading it to me in my head as I read his words, it's sort of comforting in a way.

I spoke to a few people on the phone today, there were a few things I remember thinking of as I was speaking which made me think, "Ooh that's what today's blog will be all about", of course I have forgot though.

I did read Steve's blog again today though, almost the full 9 months worth from diagnosis to his last entry.  It made me smile but also made me think as there is a lot of 'back story' which fits behind or around his blog entries, I guess like me he was cautious about not wanting to hurt feelings, seem dramatic or cause upset, I could explain further and give examples but I wont.  I have copied a few of his entries and made my comments on a new page I added today http://troubleonline.co.uk/#/more-thoughts/4553485583, I have only taken a few of his entries though, I guess just ones which seemed important to me.

The first is his first entry after his diagnosis and after his parents knew about his prognosis.  The last is his last entry in his blog.  He commented "I would have been ill at home anyway so might as well be happy and ill", it made me smile, it proves to me in his mind he had never and would never give up.  That night he was quite excited as we sat and spoke to H about the protest march she had been on, "Slut Walk" seemed like fun and much more interesting that sitting in watching the soaps.  He was also excited about www.Sheffieldpride.org.uk

We sat like old men, in the corner of the bar, glasses of Coke, him because he more or less stopped drinking when he got his diagnosis and me because I was driving, (Steve reckoned his body had enough to deal with without adding alcohol to the mix).  We put the world to rights and had a really nice night.  I suppose that's where Steve and I were alike, yes the grand gestures, fancy restaurants and swanky hotels are nice but nothing beats good old comfort food, good company and a proper chin wag.  I miss talking to him, of course I still do, in my mind and out loud too, the difference is I now look odd doing it and nobody is there to answer back or tell me how silly my new idea is. 

Anyway, after doing Steve's site I have been working on his legacy this evening, it's at a frustrating stage now, I want it to leap forward so I can shout about it from the hills but I also know I need to hold back as there is a long way to go yet.  I'm sorry I can't share it with you just yet but I'm not sorry that your first sniff of it will (hopefully) knock your socks off and make you proud that you knew the person that has inspired this piece of work.  It's all very cryptic, I suppose here I should ask what you "think" it might be.....?

I suppose overall today has not been a bad day at all, again, doing stuff for Steve has made the day a positive one, what happens when I cant do that?  I'm not thinking about that now, my mind is racing and I have thought of something else I need to investigate right now, he's given me plenty of food for thought you know.  Someone told me, (or maybe they told Steve), "bags are for holidays not for eyes",(or something like that), well my eyes are ready to go on holiday I guess as they have been packed for weeks now, oh well, it will all add character to my face and, each one is packed with stories.

Until tomorrow.... Goodnight xxx

Tuesday, 19 July 2011

Nothingness

I am not sure if that is a real word or one I just made up but thats what today has been, a whole day of nothing.  I got up at a reasonable time even though I was up till very late last night.

I pottered around this morning, in fact I have for most of the day.  I guess with everything that has happened over the weekend I sort of felt a little lost so amongst other things Steve has been on my mind a lot again today.

I have to start looking at financial stuff in detail soon too, two peoples outgoings with one persons wage isn't easy and Steve has not made things easy for me, I guess the plans we had made were just too long term because we had no reason to doubt a longer prognosis, lesson learned I think and learned the hard way too.  The thing is it has all lost it's relevance now he has gone.  I just want to bury my head in the sand until it all goes away and, as it will never go away then I will have my head there for a very long time.

I have been thinking about something said on the Brain Tumour course I was at last week for http://www.btbuddies.org.uk/ plan the fun in your week.  How can I plan fun?  Anything fun and exciting and interesting I have done for the last 6 years has included Steve.  Before Steve my 'fun' used to be dating and partying 6 or 7 nights a week but that doesn't sound attractive anymore, I have been there and done that.  Whats fun?  What fun can a Gay Widower have?  I want some and I want to be happy on the inside not just presenting a smiling face to the outside but I don't know how.

I was thinking earlier, quite a few people have seen pictures from the weekend and have said how happy I look, how much fun it all seemed to be and how Steve would be pleased.  I suppose it hurt a little hearing that I "look" happy  Isn't it though funny how easily fooled we are, just painting on a smile makes people think we are happy but they have no idea what is going on inside.  Before I start on this train of thought I know I will sound bitter and ungrateful so I won't even start, I guess I am still hurting.  The world is moving on as it should do, people are picking themselves up and being inspired to live their life to the fullest because they have heard and seen Steve do the same.  I want the world to stop, right here right now just stop, let me cling on to the fragments of Steve I have left,  memories, pictures and thoughts, I don't want anyone or anything to move as it may unsettle the dust that is falling around me, I can't turn the clock back but I dont want it to go forward either.  What will the future hold?  I know what I want it to hold and when my head is in a "good place" I can see the vision clearly, right now though it is not, the vision is blurred by the tears in my eyes, my heart is scarred beyond recognition and I start to wonder why we thought knowing this was coming would make it easier to deal with.  I can't imagine hurting more,  My chest aches constantly, feeling hollow has become the norm and this sense of being lost is becoming all too familiar.

People say I am doing well but I wonder if I am dealing with it well or just masking it well.  I don't know if I am sliding down that slippery slope to depression or whether I am bumbling around it and making slow progress away from it.  I don't know and that is part of what is difficult.  I like to be in control and I am not.  Steve liked to be in control and he wasn't either, neither of us liked uncertainty other than that which we had planned, like taking 'pot luck' on which  jokes to tell at a gig or whether the motorway route or dual carriageway would be quicker.  I can't control these emotions yet.  I guess they are like a new pet, they need to be trained to be kept in check, sometimes I spot them, grab them, and put them away but other times they just creep up on me and consume me.  I suppose I need more time to be able to train this new 'pet', perhaps I should give my new 'pet grief' a name so I can laugh at it like Steve laughed at his Cancer.  Either way I know I have a mountain to climb, I'll get there but perhaps I need to be a little easier on myself.

Tomorrow will be a good day, if I tell myself that now then hopefully it will be.

Until then goodnight,
Mark x

Monday, 18 July 2011

Like not wearing underwear...

Apologies for the late update, I did think whilst driving back that I would do this earlier in the day but I have not really been in the mood.  I didn't want to have to talk to anyone, see anyone or think at all I just wanted time out.

AI guess firstly though you'd like to know a little more about yesterday. 

It started quite early, I had been up on Friday night until the early hours of Saturday morning for no good reason other than I was avoiding bed again.  I was up early yesterday morning though and realised I hadn't ironed any clothes for after the event and for today so I did that first.  Then I got shaved, the big beard and hairy chest had to go unfortunately, (I am looking forward to their return already).

Then, after showering etc i went to the dressing room and started to get ready.  It was a quiet time really.  Steve would always have show tunes on but I was happy with my thoughts.  It all went to plan and, to think I have not put a face on since August I was surprised, eyebrows looked right first time and even eyelashes stuck first time and in the right place... that's a first EVER!  I used to get stressed sometimes because they would be wonky, after the third or fourth attempt Steve would have to put them on me but yesterday the whole lot was easy and stress free.  when I finished I noticed Steve's wig to the side, on a block but sort of watching over me and supervising.

I got dressed then and set off for Sheffield, I had planned for 10am but I got going at 11am, not bad really as my initial plan hadn't included ironing and packing, it took me just over 1 hour 20 minutes from shower to leaving and that included having to iron another shirt.

En route I picked up a friend, that too could have been a drama as Steve knew where he lived and had always directed me as he was familiar with that part of Manchester, (he had lived in the area years before), but I was not.  Anyway I got there and then we set off for Sheffield.

I tried to call en route to let the organisers know my ETA but there was no signal on the phone as we drove through the mountains so I just carried on.  by the time I approached Sheffield i had received an almost frantic message asking me to call.  They were wondering where I was.  As Steve and I usually got there early morning and they had already had a string of disasters including some acts cancelling on the morning along with some of the volunteers.

When I got there the relief on their faces was evident.  I changed into costume and then familiarised myself with the running order, the new stage manager, Andrew, (conscripted that morning because someone was ill and unable to do it) and I chatted to a few early visitors.

One of the first groups I spoke to said "where's the other one... you always come with another one as well so where is she?"  The question was perfectly reasonable and it was nice they remembered that I am indeed only half of a double act.  I explained Steve had passed away but, in short that I was there for him.  the understood, they too had lost a friend recently and although they didn't really want to party they did want to honour their friends memory.

Despite that though I didn't get upset.  I just continued. A few more people arrived then more friends arrived including Stephen, (another one, not MY Steve), Stephen, or Mistress Muffy, was to be my co-host for most of the day, along with a few of our other friends too but, I was happy to step out on stage with him as Steve and I had worked with him before, being a friend firstly but also someone we have worked with before then it just made it easier, the same can be said for Dan and Heather too, as friends they understood the bond Steve and I had and it made what was looking like a difficult day a whole lot less daunting.  I also have to say though that the last minute stage manager Andrew was fantastic, a complete pleasure to work with and he just managed to keep everything running smoothly, (as smooth as it can be when we have problems thrown at us such as we did), I was able trust him and rely on him completely, (which is out of character for me being a known control freak) as I couldn't possibly keep tabs on everything whilst I was on stage.  As I said he was just great and truly an asset to the www.sheffieldpride.org.uk volunteer team.

Through most of the day I was fine.  There were a lot of friends there and they all kept checking if I was OK, and how I was feeling, it was nice to know they cared so much and for the majority of the day I was fine.  I did have a moment though toward the latter part of the day, stood to the side of stage just watching one of the girl groups who were on and my mind wandered, it wandered to thoughts of Steve, I can't describe it really but it was almost like having a bucket of water thrown over you, this mix of feelings and thoughts just descended on me and I started to well up.  I caught myself and reigned it in fast, I couldn't afford to lose it when I was due on stage in a few minutes and, as I had done so well all day I refused to give in to the emotion.

The picture shows just a couple of friends who I was pleased to have there for the day x

The next "moment" was being on stage with Heather, I don't remember what she said, it was nothing probably, I am guessing she may have been thanking me, (she was there doing some official thanks from Sheffield Pride) but again, it washed over me.  As I replied to Heather I heared my voice crack.  Again I reigned it in and I thanked Steve, for introducing me to Sheffield and it's people, such a warm and welcoming community, they almost feel like family and I also thanked the people of Sheffield for welcoming me and Steve, I probably rambled on a bit as I am prone to doing but we gave three cheers to Steve and to Miss Whiplash. I think most people 'got' the sentiment, especially as whiplash's picture was in their official pride programme with a write-up.

I felt and hoped Steve was there with me, I wore the bracelet I made to remind me of him, the picture shows it next to the tattoo (or at least part of the tattoo), that I had done to commemorate his life just before the funeral.  It's the date of our wedding or "Civil Partnership" as it's correctly termed.  (Thanks to "G" for the pic xxx) I also wore Steve's stage rings, they sparkled beautifully, just as he would have.


Throughout the day when asked how I was I just said I was fine.  Again, it is difficult to explain but the only analogy I can give is that it is like going out without underwear on.  To everyone else you look the same, (I had the painted face and broad smile to mask the feelings inside), but, you know something is not right and something is missing.  that's probably as good as the explanation gets.  I was doing it for Steve, it didn't feel right but I did it.  I am glad I did it though and have no regrets at all, he did so much for me, and brought me such happiness in our six and a bit short years and the least I could do was to share some of that happiness with the 10,000 or so people who were there on Saturday.

After the event closed I headed off to the hotel.  The hotel booking was supposed to be for Steve and I but I went anyway.  I wanted to change and spend some time with our friends as me.  check-in at www.kenwoodhall.co.uk was fine, I did raise an eyebrow or two though as I passed a wedding reception en route to my room.  A guest was heard commenting to the bride that not many weddings have drag queens at them..... Steve and I did a few but I didn't correct him.  the room was lovely but as I sat there at the dressing table taking off my jewellery, wig and makeup I looked out of the window and saw the brightest rainbow I have seen for years.
That was it, it set me off. It may have been a coincidence but to have a rainbow so bright at the end of what was supposed to be Steve's last performance.  The rainbow was seen over the stage when everyone had gone and the cleanup had begun but I could see it from my hotel window too.  Whats the chances.  You can see how limited the view was and I had it in sight.  The international symbol for gay pride is a rainbow flag so for may of the people who were there yesterday they will have identified with the rainbow anyway, for me it had extra meaning.  I took it to mean that Steve had been happy with the day and by way of thanks, to lift the gloom I felt, he sent a rainbow.

After that the night seemed to go pretty quickly. I joined a few friends at the official after pride party but chose to drive.  I didn't want to drink.  I had managed to keep a lid on most of my emotions for most of the day, I didn't want alcohol to loosen the lid as it were so I thought it best not to drink, that, and I was tired so a few drinks and I would have fallen over!

I gave Heather a lift home on my way back to the hotel and then woke this morning after a reasonable sleep and set off for home.  I had taken my camera with me to stop off en route to take some pictures as there is some lovely scenery but the weather was too bad and I had forgotten to take a coat.

Since being home I have spent it alone, in silence for the main part.  I have not wanted to see anyone or talk to anyone.  I don't know why but I just wanted to be alone with my thoughts.  I feel anti-social but on the flip side I reckon talking to 10,000+ people yesterday will buy me some credit in the "need to talk to more people"  stakes.

I'm heading to bed now, again, it's a long one and sorry but I hope you enjoyed reading nonetheless.

Until tomorrow,
 Mark x

Saturday, 16 July 2011

The Eve of another significant milestone....

Well it may not be to you and to 99.99% of the 8 - 10,000+ people expected to be there tomorrow it wont be either but to me it is.  It will be the first time since becoming a double act with Steve that I have put a face on without him.  the first time i will have been on stage without him and the first time I don't have him to "bounce off" with banter and quips and our own brand of humour.

It's a daunting one really, I don't know what to expect of myself, I can sort of guess how the crowd will be and how our friends will be and how the artiste's will be but I have no idea how I will be.  Odd isn't it, for someone who likes to be in control and will freely admit to being a control freak, (typically only when approved as such by Steve), I have no control over the one thing I should have, me, my feelings and whatever is going on in my head.

I've already had a lot of messages and phone calls of support etc and they have come as a bit of a surprise really but all concerned about how I will manage.  The truthful answer is, I don't know, but I suppose I will.  I read my tribute at the funeral, I spoke about Steve this week at an event focused on brain tumours and I can do this too. I guess I might be more resilient than I give myself credit for, I hope so anyway.

Well not a lot else really on my mind tonight other than tomorrow.  Costume was finished today, hair started and finished today.  I have realised though I have done nothing for me, guess I ought to pack a toothbrush and some clean clobber as I will be stopping there tomorrow. Not sure what tomorrow night will bring, I guess it will depend on what the day brings and how I cope with that.

I think I need to be up early tomorrow ironing..... Oh well it's been a nice night chatting to FB friends  so not worried about that.

Will update tomorrow if and when I can xxx

Friday, 15 July 2011

Gay Widower

I sat up until the early hours of this morning reading about widowers. I wasn’t tired, as I put in last night’s blog I just have too much going on in my head right now, some things are just there and needn’t be and others are and need to be but I don’t want to deal with them. I thought I’d share an excerpt of one of the articles.


I can completely identify with almost all of this.

Grief is madness--ask anyone who's been there. They will tell you it abates with time, but that's a lie. What drowns you in the first year is a force of solitude and helplessness exactly equal in intensity to the love you had for the one who's gone. Equally passionate, equally intimate. The spaces between the stabs of pain grow longer after a while, but they're empty spaces. The cliches of condolence get you back to the office, back to your taxes and the dinner table--and for everyone else's sake, you collaborate. The road of least resistance is paved with the gravel of well-meaning friends, rather like the gravel that cremation leaves.


Paul Monette, Last Watch of the Night

Becoming a widower is a process. And it is a process the surviving partner shares with his loved one. A continuous process, it begins the moment that one is forced to half-consciously accept that you are about to lose someone very close and may not end until even many years later. Widowerhood more or less occurs in three phases. The socially accepted year or so of grief after you've lost your partner is merely the middle period, flanked on one side by a period of widowerhood in which your companion is still alive, and on the other side by a period of widowerhood long after he is dead.

If your partner's death follows a long illness like Cancer or AIDS, during the first phase your partner is still alive. The grieving begins with the various losses his illness starts to impose on your life as your relationship changes from an equal partnership into an unequal dependency. This early grieving is almost always overlooked because of the external distraction caused by dealing with hospitals, labs, doctors, social workers, sometimes ambulances, police, lawyers, various business and governmental bureaucracies, and enormous amounts of data and new routines. Amidst all this, the two of you are forced to renegotiate your partnership contract.

At the same time, something even more subtle, and insidious, is occurring: you are learning to deal with him being gone. If you doubt that, speak to anyone whose loved one has left home for the first time with some minor symptom of AIDS requiring a short stay in the hospital. The fear and panic -- or denial and frozen emotions -- these first week-long hospitalizations cause may seem greatly exaggerated overreactions to others. On the contrary, they are often healthy, early recognitions of the widowed future.

The second phase following a partner's death is when your loss is complete and obvious and this phase also has its hidden dangers. The support network, so useful during your loved one's illness and death, is often suddenly removed at this stage. People you've come to rely on often vanish, incorrectly thinking you have no need for them in your life. Others, hoping to help you, or perhaps feeling guilty about your loss and their helplessness, attempt to push you through your grieving at an unreasonable speed -- perhaps pulling you into a constant chain of social events and distractions, so you won't stay home and mope. This doesn't recognize your special need to be alone more than before, partly to rest from the mental, emotional and sometimes physical exertions you've just gone through, sometimes just for you to try to remember your loved one whose presence in your life is fading so quickly and sadly.

The third phase is the least obvious and least talked about part of widowerhood. Paul Monette again proved himself to be the gay community's bard, describing his extended mourning for two different lovers in painfully eloquent essays in Last Watch of the Night. Long after the world and those around you have ceased to deal with your great loss, you're still stuck with it. Often new information about your loved one, or simmering resentments about his life suddenly surface and must be dealt with. Bills, letters, and legacy details can take a long time to show up and are upsetting or infuriating.

In some cases, the challenge is merely that your partner has so defined your life, that now you are completely thrown on your own, and must redefine who you really are as you did when you were an adolescent. It is a difficult, often harrowing time, yet also a potentially wonderful period and crucial to any further growth in life.

Most likely all people who have buried a spouse remain intimately connected to the deceased and to that relationship long after their conscious mourning has ended. In the last decade an extensive literature has evolved about grief, but until very recently, little or no recognition has been given to the grief of homosexual men who survive the death of a partner or friend.

Intense anger, whether at the unfairness of life, at God, at the cause of death, at the deceased or just being in the unenviable position of having to pick up the pieces and rebuild a life is typical when grieving a lover. When a partner dies, a man has no choice but to become a widower. How actively he accepts or rejects the identity of a widower will determine how he deals with all the angers. Recognizing that there are numerous good reasons to be angry, and expressing and integrating that anger are essential components of adjusting to widowerhood.

This is an excerpt taken from:


Gay Grief and Gay Widowers


by Michael Shernoff, MSW


Published in LGNY, September 1, 1997, Issue 62


1997 Michael Shernoff



Told ya so...

Well,that's what I would be saying if Steve was here now.  We had a few debates in recent months and tonight I have been proved right on at least one of those points.  It's a shame, I didn't want to be right but unfortunately I am.

Anyway I am not going to dwell on that I have other worries at the moment, I am not going to rant about those here either but I will tell you I have spent over an hour this afternoon on my hands and knees trying to sort the printer which is under the desk. 

Steve loved gadgets, he always wasted money on them and this was another such waste of money.  He wanted a printer to print A3 size, so we could produce our own posters.  Yeah great!  We have never once printed on A3!  It's wireless so he could print these posters from anywhere in the house.  This is fine until the power goes off, the router re-sets and the PC cant "see" the printer.

I used to be able to ask Steve to fix it, now I cant and I don't have a clue!  there isn't just a wire I can plug in to my computer so I just had to spend ages trying to sort it.  The same happened a few days ago and I don't know what I did but it was faxed pretty quickly.  Today was a different story.  I got there in the end though.

I have had another busy day sorting stuff out, doing stuff for Steve or on his behalf again so it has been nice just to spend time alone with my thoughts and in silence.

I'm still getting stressed very quickly, I guess it is a grief thing but one of the speakers yesterday said, "where's the fun in your week?"  Right now I don't have any but his point was we all need things to look forward to doing on a positive note, be that a walk in the park or a coffee with a friend.  I need to get something sorted.  I guess I will soon.

Well I could rant more and more as usual but I wont tonight.  I am heading to bed.  there is so much stuff swimming around in my head and it is getting me more and more stressed so the sooner I  go to bed the sooner I wake up and it's a new day.  If I don't wake up I get to see Steve, I suppose there's pro's and con's to both.

Goodnight and don't forget to click on the Facebook and Twitter buttons further up the screen and on the right hand side.
Thank you,
Mark

Wednesday, 13 July 2011

4 Weeks on and it's a good day...

I know!  I didn't expect to say that either and, I know there are a few others around me who thought the same.  That said though I don't know how tomorrow will be etc but I am not going to worry about it because today was good.

I sort of dreaded today, a whole 4 weeks to the day since Steve died, it has gone so fast but feels like an eternity.  As every minute passes I still expect a text or call from him, a silly email or just for him to come and give me a hug and ask what I'm up to.  It isn't going to happen but it doesn't stop my brain thinking (somewhere out of my control) that it will happen.

Today though was also going to be a tough one because of something I volunteered to do for www.btbuddies.org.uk .  As many of you know they have supported Steve and I with information and guidance and generally being 'there' since his diagnosis, they were one of his chosen charities, (which incidentally you can still donate to at: http://www.justgiving.com/teams/StephenFaccendaakaEnidWhiplash.)  Today BT Buddies have run a course in Wrexham called "Coping Together", it is for newly diagnosed Brain Tumour patients and their carers or partners etc.  It was a full day and included a detailed talk this morning from a Consultant neurosurgeon, Andrew Brodbelt, about the different types of tumour, their grading and how they 'look' and how they are treated.

It made for a tough session but, although learning even more about tumours may seem like closing the door after the horse has bolted, (I had similar thoughts initially too - what more do I need to know other than it killed my Steve?), it was actually interesting and beneficial to be there and hear a Consultant from a different hospital not connected in any way to Steve and not even knowing of Steve, saying what treatments are for Glioblastoma Multiforme (GBM), what the follow up scan timetables are, the difficulties in treating them and their characteristics etc, everything was consistent with what I had heard Steve's consultant say to him.  It sort of re-assured me that Steve had the best care possible and available in this country and, as he outlined the pro's and con's of some new treatments, his concerns about them and reasons why they are not used more this again served to convince me that Steve had the best possible care.  In fact listening to him and hearing about the cancers and their effects and hearing some of the other speakers really made me appreciate even more how brave Steve was and it made me even more proud of him and especially proud of his positive outlook, (notice I say positive? He was NEVER in denial, he always accepted and acknowledged the possibilities but remained positive despite this).

The other speakers today spoke about the psychological effects of living with a brain tumour and Epilepsy and brain tumours.  I could identify with a huge amount of the psychological effects of living with a tumour but they related to me in grief, how I have dealt with losing Steve and how I am dealing (or not) with where I am "at" right now.  I suppose it is the same as a tumour victim may grieve for the future they feel they may have lost, I certainly feel Steve and I grieved for the last 9 months on the loss of our future.  That doesn't mean sobbing all day but it means accepting that we are not going to get old together and have matching OAP Scooters, we wouldn't end up sat like Waldorf and Stadler (the old guys in the box in the Muppet Show), bitching about people in the street and we wouldn't ever be making the mistake of getting our dentures mixed up in a glass in the bathroom. 

We grieved not for what we had lost, because we cant lose old age because we didn't have it but we lost those thoughts of an old age.  We moved our goalposts a little and aimed for being on our boat within 12 months, for perhaps going on a holiday to see Leon in Israel later this year and we planned to make Christmas presents again this year so we could give handmade gifts, (which we knew would become even more precious if one or other of us were not around).  We didn't envisage having to bring the goalposts SO close but we still lived a full life and planned for the future as best we could, (incidentally 'we' will still be doing most of that it's just that the responsibility for them now falls solely to me).  Anyway, after him the Epilepsy woman spoke, if I am honest I didn't pay a lot of attention as it was not relevant to me, (and Steve's ONLY seizure/fit was the one that saw him off so not a nice thought).

I spent a sizable amount of the day too talking with other patients and carers about their tumours and also about Steve and his/our coping mechanisms.   A few people asked where he was, why had he chosen not to come etc and when told why he wasn't there I got the looks of shock, embarrassment, sympathy and confusion as to WHY I would choose to be there so soon after his death.  One lady burst in to tears on me... (I didn't like to tell her it should be me crying).  I explained Steve would want to help others and, if my being there helped others then that is what I will do.  I explained I volunteered and could have opted out at any time but chose not to.  Some 'got' why I was there and some didn't but they each thanked me for coming and for being so open and honest and that was appreciated.

This all seems pretty OK until you realise that this afternoon I had a small presentation to do for www.btbuddies.org.uk , as I said I was a volunteer and Natalya was naturally cautious about me doing it as she was also only too aware how soon it all is, it could have gone one way or the other with the potential for me getting Brain Tumour overload and having a complete meltdown.  As you guessed i didn't have a meltdown, the presentation was well received and I felt better for being able to do that and bring a little hope or comfort to those in the room, one said I was an inspiration, I didn't feel it but I thanked him.  I just did what I thought was the right thing to do, right for me as well as for Steve and for BT Buddies.

So there you have it, that is why it has been a good day.  Just 4 weeks on from Steve dying I have been able to help others on their brain tumour journey, something which was (is) devastating (not devestating as one of the presenters today had written),  has now been turned into a positive and is helping other people.  Just another way Steve is continuing to help people even AFTER his death.

Following on from that I have come home this evening and had 2 really nice messages, one from my Aunt (although she is only really old enough to be my big sister, but as she hates Aunt I will use Aunt) and from my Sister, both of which really made me smile.  Thank you both xxx

And finally, in proper newsreader fashion I thought as it is 4 weeks since Steve died I would post a pic of him.  It is one of my favourites.  I love the glint in his eye.  This picture was taken in Chester the morning after a large night out in Chester.  We had been outside a pub or club the night before and looked in through the hat shop window.  There, we both saw the red top hat, we both turned to each other and said, "I want one".  We loved the look of them and as we both had evening tailcoats which we used on stage we decided to buy a red hat to wear with them.  We thought red basque, stockings or fishnets, tailcoat and top hat..... there are pictures on www.troubleonline.co.uk of Steve (as Miss Whiplash) in that very costume.

We found the shop the following day and despite our horrendous hangovers we both got SOOO excited about having new hats to wear, we bought one each, strolled around town like the cats that got the cream and  then went home not buying another thing because we had only gone for our hats. I always thought Steve suited a hat.

This hat is the very same one the funeral director, Shirley, wore at Steve's funeral, it seemed a fitting tribute to him for her to wear his hat in honour of him.  She looked good in it too but not half as handsome as Steve.  I know I am biased but I still thinks he looks great considering he, (and I) had the mother of all hangovers!

Well I shall say goodnight now, sorry it's a long one but hopefully you feel better for reading something positive, I certainly feel better for writing it, for thinking it and for being there today in memory of Steve.

Tuesday, 12 July 2011

It seems for some reason the end of my last message is missing so here it is.... Remember this fits after my last post, oh the joy of mobile communications....

For me this represents Steve, he had beautiful blue eyes, flashes of lots of different blues and so sparkly and twinkly, especially when he was being naughty so this sparkly bracelet reminds me of his lovely eyes.  The angel wing charm us the same as he bought me not long after his diagnosis last year. He said I was like his angel so he wanted me to wear angel wings, I wear them on a necklace.

The sentiment behind this means a lot to me, to anyone else it is a row of crystal beads but to me it is a reminder, it sits on my wrist just next to the tattoo I had done there to remember Steve by before the funeral.  Both are in my line of sight many many tea a day and both make me think happy thought of Steve.

Well folks its been a long day, still have stuff to do and need to be up for 6am so I will say goodnight..... Goodnight x

Bugger!

Well today had been an ok day until around an hour ago when my Internet connection went down. It went earlier and caused me problems having to reset the wireless printer, Steve was the techno geek but showed me once what to do, it took me ages but I got the damn thing working again so I must have listened, it was something to do with ports. I think I will be wired in future, it seems more reliable.

This 'going' tonight is someone's way of telling me to go to bed as I have a lot to do tomorrow so I will go soon.

Today has been a good day, I have busied myself doing stuff for Steve or in memory of Steve, so all in all my day has been about, around or to do with Steve, even the letters I got this morning re Steves estate didn't bother me because it was for him, (a lengthy tax form to complete for him).

I think that was my downfall last week, I felt lost without Steve, and doing stuff which was for me not for or with him made me feel the loss even more, maybe I felt selfish? I don't know.

This morning I made a bracelet for myself from crystal beads Steve and I bought to make handmade Christmas presents with for this year, the pic is below.

Highs and Lows

Today has been another odd one.  It sort of started on a low, I felt pretty low, just sad and depressed, it's still no easier waking up alone.  I always say goodnight and good morning to Steve but he never replies anymore, my morning hug is usually a text or an email which has come in overnight and it is now always my turn to make the bed in the morning, I am always the last one out of bed so I get to make it.  I am also the first out of bed so perhaps I should have a word with myself.

This morning motivation was lacking completely, I guess I still felt pretty flat from the weekend.  I know i needed to sort stuff for Sheffield this weekend but couldn't be bothered, it wasn;t a personal thing i also wanted a brew but couldn't be bothered with making it.

Someone from work was supposed to come and see me this afternoon, he didn't show.  Either he forgot or whatever he wanted to discuss with me was not that important.  If I had a busy social schedule then I may have been frustrated to have waited in all day, I was in all day anyway so it didn't matter.

I started this afternoon on preparations for Sheffield, focussing on something other than the computer and away from the computer was a huge benefit.  After a few hours outside, searching for stuff and then being creative I felt so much better.  So much so that I want to do some more so hopefully tomorrow will be a creative day and a good day with good memories of Steve.  He loved being creative, if you ever meet her ask his Mum about his "Stained Glass".

Oh, something I forgot to mention the other day, when speaking to someone about Steve passing away, it must have been the pensions people anyway, either way they took some details from me and said they would write a letter.  I received the letter a few days ago.  It was from the DWP.  They thanked me for my application for Widowers benefit, (I didn't know I had applied), but they told me as Steve (and I) are under 45 we (I) am not entitled to it.  It seems I cannot be classed as a Widower, (by the DWP at least) unless I have attained the ripe old age of 45.  Steve would have loved to get to 45, in fact he was REALLY looking forward to getting to 33, mainly because it would have signified him surviving 19 months after the 12-18 month prognosis so technically beating the odds, he got 9 months.  I suppose we should be grateful for that.

What am I though if I am not a Widower?  Well, not for another 9 years or so anyway, am I in some 'other' category for now like "Widower in waiting" or something?  Who knows?  I am notgoing to stress about it, who needs a label anyway, Steve was more than my Husband he was my soul mate, husband sort of trivialises the relationship.  We always felt "Partner" to be a stronger word, even though we were "Married" (A Civil Partnership is a form of marriage), we felt Partner conveyed more of what and who we were, we were two individuals who are together as partners in life because we WANT to be there, not because of or as a result of a piece of paper but through choice, free will and an invisible unbreakable bond.

This evening I have spent time trawling the internet again.  I've actually re-visited the Macmillan website. http://community.macmillan.org.uk/, it's OK I guess and the people there are nice but it is just a bit slow.  Apparently there is an upgrade to it soon so hopefully it will become more user friendly.  Someone there though has visited our site, http://troubleonline.co.uk/ and has seen the pictures there of Steve and just commented how "right" we looked together and how beautiful Steve's eyes were.

I loved Steve's eyes, I had lots of favourite parts of Steve but his eyes just told me all I needed to know without him having to utter a word, I miss his eyes twinkling back at me, yes I have photographs but they don't twinkle like the real thing, I guess I have my memories though.

Well my mind is racing now and there is SO much I could write but I don't think it'snecessary.  I will say goodnight for now and will write again soon.

Lots of love xxx Mark xxx

Sunday, 10 July 2011

A Tough Lesson To Learn

Another painful day.  There is no other word for it, it is just painful.  The day started OK I guess, I was up and about but didn't leave the bedroom, I busied myself tidying and sorting, I don't know why, i just wanted to.

I got a phone call then from a friend to see what I was up to.  I wanted to go out and buy some picture frames (again),  so I agreed to collect him from home and we would go.  I got to his and we went out, probably around 11.30, we went to a few shops but he was home just after 2.30 and I drove off.  Just as seems the 'norm' of late when I have had enough then that's it, no pleasant cup of tea I just need to go.

I drove for a while and pulled up, probably about 20 miles away but near a canal.  I took the camera and set off for a walk along the canal, it's the Leeds and Liverpool canal so it will be one I hope to get quite familiar with when I live on a boat.  I walked for around 2½ hours, maybe more.  It was nice being alone.  Not a lot to photograph but still, somewhere different for me to walk.

I felt in a daze again, for no reason, obviously Steve was in my thoughts but I didn't just think about him.  I got home and cooked some food, I'd not eaten all day but was still not hungry.  I ate though as I know I should but even that seemed tasteless.  It wasn't, it was packed with so much fresh veg and good stuff that it was bursting with flavour but it all seemed bland and pointless.

This evening I have been sat at the PC, not doing anything productive, I have not done anything productive since Friday.  I was trying to find other people in the same situation.  It was difficult at first, so many stories of a husband lost, so many wives now having to deal with their own loss whilst looking after the children.  That's not relevant to me.

Then I found it, I found a few actually, gay guys like me who have lost their partners.  Partners lost to cancer and two who have lost their partner to the SAME type of brain tumour that killed Stephen.  So many stories of people who have found their soul mate only to have him snatched away cruelly at a young age.

Reading their stories I understood, it was like the mist cleared and I realised I was not alone.  I have got SO tired of trying to explain to people that losing a partner IS NOT THE SAME as losing a Mum, Brother, Son, Aunty, Granny or Cat and, until you have lost a partner then you will never know and never understand.  Hopefully you will be lucky enough to be the one to go first so you don't know this pain. 

Also, people underestimate the word "partner" is is not just someone you are married to because it is convenient, because you felt you should for the kids, because you have been together for 20 years.  My partner was like part of me, half of me.  We loved spending every minute of every day together.  How many married couples do you know who can't bear to be in the same room or who each live separate lives under the same roof only to curse the time they "have" to spend together on holidays etc.  Steve and I were not like that, we loved living together, working together, socialising together in fact just sitting in the park watching the world go by...TOGETHER as the friend who led Steve's funeral said, like two halves of the same coin.

I have learned today that no matter how much I try to eaplain people will not understand until they have experienced it, no matter how eloquently or bluntly I put it no matter how much they want to and no matter how much they truly care.  It seems like i am being ungrateful, I am not, I really am grateful for all the love and support around me but I have decided now not to stress about trying to help others understand.  It is difficult enough for me to get my head around it without having to explain it. Again, i really am grateful for all the love and support around me but I have learned the discussions I have about my feelings and thoughts need to be with people who understand, not with people with whom I have to explain each minuscule detail before they can even begin to understand.

There are a few friends I can talk to and, talking to one of the ladies at the party last night and chatting to a few gay strangers tonight who have also lost their husband or partner has made me realise that no amount of wanting to understand will help.  I know my friends care, I appreciate that more than they know and they care for me in so many other ways but they do not need the burden of having to try and understand me or my feelings, I know they want to help but sometimes just a brew, a hug or a text is all they need to help me most.

I saw this yesterday, it struck so many chords with me, I have hesitated over posting it.  I didn't want my friends to read it and think I was pushing them away or that I am in the slightest bit ungrateful for their love and support but after realising I have learned a tough lesson I also realise that my friends will understand I do need them and want them in my life and I do need them and want them around and I actually like the odd messages I get and strange pictures but their love cannot take my pain away, only I can let my pain go and right now I am trying to do that.  I know my friends cant do it for me but they can cheer me on, and they have done and I hope they will continue to do so, as I said I know my friends will understand...

Don't Tell Me...


Don't tell me that you understand, don't tell me that you know,
Don't tell me that I will survive, how I will surely grow.
Don't tell me this is just a test, that I am truly blessed,
That I am chosen for this task, apart from all the rest.
Don't come at me with answers that can only come from me,
Don't tell me how my grief will pass, that I will soon be free.
Don't stand in pious judgment of the bonds I must untie,
Don't tell me how to suffer, don't tell me how to cry.
My life is filled with selfishness, my pain is all I see,
But I need you, I need your love, unconditionally.
Accept me in my ups and downs, I need someone to share,
Just hold my hand and let me cry, and say,
"My friend, I really do care."

Author Unknown

Guilty

I've decided today I will not use the word "Well" to start my vlog, I seem to do it a lot and "Well" is just not something I feel right now.

This morning started pretty slowly.  I got up and Steve's Mum was already on the phone to mine , not sure what about but I spoke to her first thing.  I can imagine what Steve would say and what he is saying now, I just wish I could hear him say it for real though.

I had planned to do loads today but the computer went on and I got distracted, I updated the Trouble site http://troubleonline.co.uk/ which is now effectively a tribute site for Steve, I felt pleased though it's had a bit of an overhaul and is now more relevant to where we're at, if that makes sense.

That took me till lunchtime I guess so I had some toast and got on with writing a few cards.  there were still some "Thank You's" to do from the funeral so I did those along with everything else.  they have all been posted now so hopefully people will get them soon.

After that I got dressed and have really sort of been in a daze for most of the day.  Tonight you see, Steve and I were supposed to be going to a friend's 30th birthday party.  It was fancy dress but, as we had sold most of our costumes we spent ages trying to think of what to wear.  Steve's first idea was that he would go as Lola.  That is Lola as in the Manilow song, used to be a showgirl with yellow feather in her hair etc.  This would have been VERY appropriate as we had given up life on stage.

We then decided we wanted to go as a couple, the same i guess as we always did in Drag, we always complimented each other.  We were torn between either going as the Mario Brothers, Luigi and the other one or going as Miss Piggy and Kermit The Frog.  I was of course going to be Miss Piggy and Steve would have made a  fetching kermit.  We had discussed it the Saturday before he died but had planned to decide for sure on the Sunday when we could look online at costume ideas, as you guessed we didn't get to make that decision.

When I thought about tonight's party I wanted to go to support a friend we both cared about and who has been good to us too.  I was daunted at the thought of walking in to a party, a house party at that, on my own, not really knowing anyone other than the host.  Usually it would never have been a consideration as I would have Steve to talk to and he would have me but I didn't have him to talk to.  It's just over 3 weeks since he died and I wasn't convinced I could do it.

I busied myself with various things, making excuses not to think about it really then decided.  I decided at 7.10 pm I would go.  I sent a quick text to ask for the postcode for Sat Nav and got washed and changed and set off.  It took less than 10 minutes to get there, just as well really as any longer and the doubts I had would have resulted in me turning the car around and heading home.  I got there just before 7.50 pm so you can see how quick I was getting dressed and out the door.  No, I didn't go in fancy dress, that would have required more planning and would have probably resulted in me not going.

The host was still getting ready but there were two people there initially that I did know so I chatted to them for a bit, they left quite soon after as they had to go to work but by this time people were arriving in costume and asking who I had come as.  they decided I had come as "The Bouncer", probably just as well as I couldn't think of what to say, I didn't want to explain why I was not in costume and I did feel I'd let the side down a little as there were some fab costumes and clearly a lot of effort had gone in to them all.

After a while, chatting to the host and feeling a little lost I got chatting then to two ladies, talk came around to costumes as I had taken an interest in how the host had made his hat.  They asked if I had ever done drag etc and I said yes, until last September I had worked every week up and down the country.  One asked why I had stopped and I said, I was part of a Double Act and my partner had to stop performing.  It seems they already knew of me even if they didn't know who I was as the realisation came across their face that I was the partner of the person they had heard about recently.  No apology was necessary and in reality it saved me having to explain why he had to stop performing.

After chatting a little more one of the ladies turned to me and said "I know how you feel", I imagined myself rolling my eyes thinking, "here we go again", as even the most well meaning people manage to get it wrong when they say, I lost my brother, son, mother, granny, uncle, cat etc.  Yes, I am sorry for your loss but it is not the same as losing a partner.  You don't have the same relationship with your Mum as you do with your partner and, whilst you may be very close it is not the same, neither is it the same as a best friend, a sister or great aunty flo who died at 97. 

This lady did understand though.  She lost her husband 4 years ago.  She crystalised my feelings in a few sentences, she knows EXACTLY how I feel.  She is still feeling the pain after 4 years, it seems her relationship with her Husband was as perfect and as strong as Steve and I had.  She confirmed my thoughts, time does NOT make it easier it just changes how you deal with the pain.  She said she still finds it a struggle and the thought of meeting someone else is as abhorrent to her four years on as it is to me now and yes, we have both heard people say, "but you're young, you should meet someone else and be happy", NO!  Why don't people understand when you have a bond that strong it cannot be replaced or patched up or forgotten.  Someone else cannot fill the hole in your heart left by your lost loved one.

The other favourite saying is, "it's what he would have wanted" How do you know?  You didn't know him like I do, he didn't tell you his innermost thoughts, his deepest fears or his wildest dreams so how could you possibly know what he would want?  I can make a pretty good guess at what he'd want and to have other people speaking for him would not appear anywhere on his list, not even near the bottom. It was the one thing he detested most and it was the one thing people felt they had a right to do as soon as he got ill.  He used to tell me "when they operated they took away my brain tumour NOT my brain" he hated how some people felt they knew what was best for him.  I understood and fought his corner for him and with him and backed him all the way, thats why he went to work and thats why he enjoyed a "normal" life, because it was something HE wanted to do and WE were prepared to fight for.

Tonight I struggled with my decision, I knew Steve wanted to go to the party, thats why I felt guilty, because I didn't want to enjoy the party he didn't get to go to.  I know he would want me to go alone but I felt guilty going alone, he should have been with me.  I flipped the decision though.  I thought about what I would want Steve to do if it was me that had died 3 weeks ago.  I would want him to go, I would want him to smile and be happy and be the vibrant and bubbly person I know he can be.  I would never ask anyone to do anything I wont do myself.  So that was it, my decision was made and I went.

I cant say I was vibrant and bubbly but I feel I was pleasant and sociable.  I don't feel I enjoyed it but I feel better for going. I didn't enjoy it because Steve wasn't there, because it was difficult and because I was hurting inside but the host was lovely, his family and friends are lovely and I don't think anyone could have made me feel more welcome than I was tonight.  I feel better for going as thats the first time I have had a night out without Steve, better because the first time has been done now, hopefully the second and third and fourth will each get a little less uncomfortable and so on until they become bearable then tolerable and eventually enjoyable again.  It may take years, my new friend this evening said it is still difficult after 4 years but she is doing it, and so will I.

So Will I.....