Life has been varied and I’ve experienced good times and bad as I'm sure we all have. In no particular order I'm a Partner, Friend, Brother, Son and Widower trying to make a difference. That's not an exhaustive list but its a good start.
Friday, 22 July 2011
A good habit to get in to...
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
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
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 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...
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 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....
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 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...
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 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
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!
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
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
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
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.....
Saturday, 9 July 2011
Second blog of the day...
Today has been a long day. I was up pretty early and had loads to do, I don't think I have done it all, I certainly forgot to go to the post office, I stayed in all day and I am sure there was more on my list (in my head) that needed doing but hey ho, there is always tomorrow.
Today I have been mainly working on the foundations of Steve's legacy, it seems odd writing about it but not saying what IT is but you will understand, I want it to be right before everyone sees it, I know Steve would be chuffed with what we have done so far but there is a lot more to do.
This weekend I am not sure what I have planned, hopefully a walk at some point, it has been raining today so it will be a chance to wear the wellies we bought for Crick. Thinking of that has just reminded me that I need a boot jack and some more wellie socks.
If I do go out I will take the camera, not sure where I will walk to though but I guess there are lots of places I can go to although I do have plenty of other things to occupy my time.
I had an email from work today, nothing heavy but I've been told there are BIG changes, I don't know what that means though. Even when I was in the office I was the last to know, we would have new staff and I would not get introduced to them until their second or third week. I don't know what "BIG changes" means but you can guarantee if it is that big a change it hasn't been decided since I have been off, it will have been "in the offing" for a while, why the secrecy though? Hmm, not going to worry about it, I have too much else on my mind right now.
I put some music on earlier, really the first time since Steve died. It went off pretty soon after it went on, I just can't tolerate noise or distraction right now so silence is king, seems odd for an Ex DJ to say they prefer silence but I do.
Not a lot else to report, it's been a crap weather day, heavy downpours then glorious sun, I hope I don't get caught in a downpour if I go out with the camera tomorrow....
Anyways goodnight and I'll see ya tomorrow...
Friday, 8 July 2011
A balancing act...
Well yesterday was another mixed day. I got up really early, I didn't sleep much on Wednesday night, i went to bed early but my mind would just not switch off. I was up and about a few times in the night and then awake really early so a pretty unsuccessful sleep.
Yesterday morning i planned to head out to the bank, as I was getting ready though I got a phone call from a friend in Australia. it was lovely to hear from her, she has been out there a while now and although we chat on facebook occasionally it was really nice to catch up. She obviously knew about Steve passing away but wanted to chat too. I felt much happier after speaking to her, she didn't say anything special it was just nice to talk to someone different but familiar, (if that makes sense).
After that I did head out to the bank, well there I was stood at the counter and suddenly got a "waft" of a strange smell, I turned around and it hit me, the smell of wee from the old lady behind me. I felt sorry for her a little as she was with her granddaughter who was well groomed etc (and in her mid 30's I'd say) so you'd think she would have a word with Granny.
I was asked to take a seat to wait to speak to the right person and the woman in the waiting area with children in tow smelt of poo, (or at least one of them did). I get that maybe the child's nappy needed changing so go and do it.... eeew it just made me feel sick. I am not judging and I guess some will take issue with me mentioning it but personal hygiene is not an expensive luxury, it's about respect and self respect, it's just not necessary.
When I got home I busied myself with various things and spent ages on the phone to a friend discussing Steve's legacy. It motivated me but, tiredness caught up with me and I ended up having to go to bed.
I slept OK last night I guess, I still feel tired this morning but I just got up anyway, I guess theres a fine line between being tired and being lazy and I know if I stay in bed that is (or can be) a slippery slope to depression. I feel I am at the top of that slope, a bit like sitting atop a triangle. Sometimes I start to slip down it but I pull myself back up. I am trying to move away from the edge but it has a sort of magnetic field which drags me back so I teeter on happy and sad for the most part of most days right now, still I guess it is an improvement from being on the side of sad just getting an occasional glimpse of happy....
Well, I need to crack on today, loads to do. Sorry for the "mystery" re Steve's legacy, some people know what it is, well those who need to know right now do and everyone else will just need to wait until it is complete, or almost complete, to be able to find out more. I think you will all like it though xxx
Have a good Friday.
Mark
Wednesday, 6 July 2011
A Tiring Day
As you may have seen from my post yesterday my Dad was rushed in to hospital yesterday morning. To cut a long story short I went across to be with him yesterday morning so spent a large amount of the day at the hospital, (the same one Steve died at). We came home for a few hours late afternoon and then went back in the evening as they were planning to let him out. We got out at 11.30pm!
The upshot of it all is that they don't know what caused the collapse and they will do further investigations and will send him for tests. I guess it's lucky he didn't pass out in the car on the motorway or at the top of a flight of stairs or something. He's not concerned, he said he feels fine now. I am not convinced, he would say that anyway just so people don't worry, he doesn't realise it makes them worry more.
I came home and went to bed, or at least I tried, I had stripped the bed in the morning and washed the quilt cover and had not had a chance to change it so had to fight with the duvet before getting in to bed :( I still managed, by about 1 minute, to get in to bed before midnight, the first time in as long as I can remember. I didn't sleep great though, I was awake early this morning.
Today has been a tiring day. not because I have done a lot but I think I am just coming down with a cold or something similar. My everything aches, I have a sore throat, nasal congestion and and my head is throbbing. that sounds a little like Steve's symptoms on times, I know I am not as ill as he was though but I think an early night is in order.
I have spent a lot of today working on Steve's legacy, I have been trying to map what it will look like and more importantly what it will achieve, it's all interesting and enjoyable but I lost focus around lunchtime. I got bogged down in reading technical stuff so had to change my plan. I wrote some more instead.
I keep trying to push myself to focus and concentrate more every day as I need to go back to work soon but I am struggling. At home I can be grouchy, get upset and change my mind about doing something or not. At work there is less flexibility and I really don't want to be grouchy with my colleagues or turn to a blubbering mess when the phone rings and distracts my silence or when I just cant think what I need to do next. At home those don't matter, at work they do.
I feel I have so much to do but not enough time to do any of it, I guess in part it's because I am tired. Yesterday didn't help, it brought back lots of things to me and it consumed the whole day, from 9am when I took the call to 11.30pm when we finally left the hospital. Still, at least he is OK.
Not a lot of other news really, I spent a while on the phone today talking to a friend and then this evening to another friend, I have read the comments on my blog from yesterday too. I guess it comes to us all, bad stuff I mean, and what does seems to be evident from those and other emails and messages I have had is that bad things always happen to nice people, I have probably said this before but, maybe I need to not be so nice!
One nice thing though, to end on a positive, is that Steve's charity collection is now OVER TARGET!!! this is FANTASTIC, obviously it would be great to get it even higher and I would desperately love that. If you have donated already THANK YOU and especially to those who have donated MORE than once. Remember every little helps, one beer less this month or one less take out coffee can make such a difference to the fund. Remember, you won't be able to buy Steve a drink when you see him out so leave it here for him where it can do more good http://www.justgiving.com/teams/StephenFaccendaakaEnidWhiplash I know I keep harping on about it but I make no apologies, brain tumour charities are VERY under funded and need as much help as possible. Thank you for your help from the bottom of my heart xxx
On another positive, and my final thought for the evening is that the 13 year old boy I mentioned a few days ago is making slow progress but in the right direction, please join me in sending lots of love, hopes and positive vibes to H and her family.
Goodnight and take care, until next time xxx
Mark
Tuesday, 5 July 2011
Hospital again...
Here I am again sat at A&E at the hospital. Not for myself but this time with my Dad.
I received a call this morning just before 9am to let me know that my Dad had collapsed at work. His colleagues had tried to contact my Mum but were unable to get through so must have got my number from his mobile.
You can imagine my thoughts, not again, I really don't need the stress, neither does my Mum or anyone else in the family for that matter.
Steve's Mum and Uncle Mike were due to come and visit me today, I called to let her know my Dad has been rushed to hospital so that's been postponed. She will be down later in her own, hopefully we will know more then.
Right now I don't seem to be feeling anything, obviously worry and concern for my Dad but sort of numb too, I guess it is just too soon after Steve, I have pushed back the tears etc, not sure what I would be bawling about.
A friend tried to comfort me recently in how well I had been coping with Steve's death, her hubby says we don't get sent anything to deal with that we can't handle, now whether you believe it is God or Fate mapping our future is irrelevant, I just wonder why he or she thinks I CAN cope with all this.
How do I appeal the decision?
Sent from my iPhone
Monday, 4 July 2011
A Mixed Bag
I got up and went out and about, just a few shops I needed to visit, the same old thing Steve and I used to do really but yesterday I did it on my own. I got upset en route from one place to another. It felt like a normal Sunday out and about with Steve but when I looked over to the passenger seat Steve wasn't there. It got to me..... it hurt a lot actually just seeing the empty seat next to me where Steve should be.
Later in the afternoon I had planned to walk along the canal with Dr Jon and Nick & Geoff but Jon had a migraine so wasn't able to come. Usually I would have opted out too rather than go on my own, we're all heard the saying which ends, "three's a crowd...". Well it was a nice walk. A walk Steve and I have done before and the plan was when we got to the pub we'd have lunch and a beer and then walk back.
Being a sunny day the place was packed, family groups and couples and me. It hit me like a punch in the face. I just looked around and I suddenly became aware of being VERY single. Not something i saw myself being and not something I wanted to be but there I was. Even though I was there with friends I felt lonely, I cant explain it really and I don't understand it but my stomach was in knots and I just wanted to run away. I didn't, I walked back as planned.
I said goodbye to Nick and Geoff and came home, they invited me in for a drink etc but I was aware I had become crap company just about the time I was reminded I was on my own.
I got home, read the local newspaper and went to my room, I just wanted to be on my own but when I sat on the bed I just fell asleep, I woke up around 9.30 and I could really have got undressed and stayed there but I got up.
I don't really remember how I filled my evening from there on, I guess it was just a bit of a blur until a friend called around 10.30. He was a real tonic, I guess like most people I answer the phone and put on my phone voice so as not to upset whoever the caller is but with him I don't feel I need to, he has lost a partner too so understands. He's very patient and just knowing he understands makes a huge difference.
After that I spoke to another friend until around 2am this morning, again someone else who has been there and lost a partner and understands first hand how it feels. It wasn't all doom and gloom though, we discussed Steve's legacy. It's gathering pace and I really cant wait to give more info but i know it needs to be right so will be patient.
After that I went to bed and read until 3am this morning. I got up at 9am though and went to visit Steve's Mum. We sorted a few things and then I headed back home. I called into a park on the way back to take some pictures, I thought i would photograph some flowers but I didn't. The battery died on my camera so I went home. There are some photos online, follow the link, they were taken yesterday in my garden and today at the park.
Saturday, 2 July 2011
Saturday thoughts...
Yesterday was a bit of a nonsense day really, I don't remember much about the earlier part, all the days seem to be the same right now. I did spend a lot of it though on the phone, advising Steve's business connections he has passed away and also interestingly the tax office, I waited in a queue for over 20 minutes and my call was dealt with in 2 minutes, they will "send a form", seems to be the usual response, a blanket "we will send a form". I guess it is better than the numpty at RBS who said we would BOTH have to sign to have Steve's DD's cancelled!
Last night Nick and Geoff came around, it wasn't planned but they brought a Chinese meal as it seems they established via my text replies I had not had not eaten since lunch. It was much appreciated, I had not thought about dinner and would probably have settled for a bowl of cereal so "meals on wheels" was good.
They must have left before10pm and then I just got on with writing some letters I had been meaning to do, I have more to do including one to a mate in Auz. It is surprising how many people, no, not people, friends, who have stepped up to the mark throughout Steve's illness to be there for him and us. Something we have both appreciated, (and something I continue to appreciate) Some have stepped away too though. It hurt Steve to see people he thought of as friends avoiding him. Yes we knew it was difficult to face but it was Steve with the illness and shit prognosis not them. It hurt me too to see how it affected Steve especially in regard to those friends of mine I introduced Steve to who showed their colours as "fair weather friends".
Fortunately for me Steve got to say whatever he needed to say to them before he died, he didn't worry himself about them any further but there were a few he felt sorry for afterwards. Feeling sorry for them through is not the same as regretting. He felt very strongly he had made the right decision and, for the record, so do I. It is just a shame he had that stress to deal with on top of everything else in those early days and if I knew then what I know now then I would never have introduced them but such is the gift of hindsight. Steve has taught me to be a better judge of character. Aside from all that we have met many more friends since Steve's journey began and it is nice because we have been able to spend time with people who appreciate us.
Anyways, all that from being grateful for meals on wheels! Later last night I put my wedding suit in the wash..... for those who don't know Steve and I wore Asian wedding suits for our marriage, a Shilwani, Steve wore his for his farewell performance as he had said it was the happiest day of his life. I wore my jacket but with black trousers and shirt. Mine got makeup and allsorts on it at the funeral, people crying on my shoulder etc..... remember I am the widower not them..... anyways, it went in the machine and I waited with baited breath to see if it would come out OK, if it would shrink, if the metal embroidery spoilt or if the marks actually came out.
I didn't go to bed until 2am, again I guess I was avoiding bed but I justified myself by busying myself with paperwork that needed doing.
Today has been another odd day. I got up this morning and felt very "slow", I just struggled to get into gear. I tidied up a bit, put the hoover over, cleaned the cooker and generally did a few chores. Really, this was to distract me from it being a Saturday which I would normally spend doing something nice with Steve.
I also inspected my jacket which came out of the wash before bed. It was fine no damage apart from a few missing crystals which can easily be replaced. I tried it on and it had not shrunk either, I was VERY happy. It will definitely be worn again for special occasions and every time i wear it I will of course remember the day we tied the knot.
This afternoon, (after getting lost en route), Steve's Mum came down. We went to the shops to get some picture frames for pics of Steve I had printed, we went to return a shirt I bought and don't need and we also had a little look around form something suitable for Steve's ashes. We didn't find anything for his ashes but we had a nice time out and about chatting, I explained to her how I am going to need her to help with Stephens legacy. It's a big ask but I am sure she can do it, I wont push though and I know she needs time to get over this as do I but in time I am sure she will be a huge help.
When we got home my olds were home, they got back from Norfolk about 30 minutes before we got home. they had a nice time. it was nice to see them and they seem to be better for the break, I felt better for the break too so hopefully now we are all feeling a little more positive to move forward, flog the house and start our new lives. A scary thought but equally exciting, I guess it just depends how you view it. A fresh start doesn't mean forgetting Steve, it means remembering him and taking all the good things he taught us and taking them to a new place. I am not sure how composting will be useful to me on a boat but positivity regardless of the outlook certainly will be. There are big changes ahead, they were not scary with Steve so I wont let them be without him.
This evening has been pretty chilled, I made a risotto for dinner, I never realised how long it takes, usually I would be chatting to Steve so time just flew past but tonight seemed to take ages. I guess I have to get used to it.
Well not a lot of other news really, Steve's fund is growing nicely we just need a few more to smash his target and help two charities and causes very close to Steve's heart and ours, please help if you can, payday has just been and £5 even £2 or £3 will make a huge difference, you cant buy him a birthday card or Christmas present so your help is VERY MUCH APPRECIATED, we would love you to help us exceed his dreams http://www.justgiving.com/teams/StephenFaccendaakaEnidWhiplash. for those who have donated though, THANK YOU, from Me, Steve's Mum and Dad and all who will benefit from your kind donation.
Well finally, and importantly, I just want to mention a friend of ours, her Nephew is very poorly after an accident on Tuesday and is is intensive care, he is 13 years old, all my hopes and positive thoughts are with Helena and her family right now. I really do know how it feels to see someone you love dearly fighting to get better, I hope with all my heart he gets better soon, sending HUGE hugs, hopes and love to H and her family xxx
Until tomorrow xxxx Mark xxxx
Friday, 1 July 2011
Ham, Egg and Chips
Funny but just after that I tried to recall when I last ate that, I thought initially it was as a child but then remembered Steve and I had both said the same thing when we had that for lunch a few months back.
If you've been reading a while you will know in January Steve and I went to Peckforton Castle for short break, it was a Christmas present and very nice it was too but, on the way to check in at http://www.peckfortoncastle.co.uk/ we passed a pub and decided to call in for lunch, one of these country pubs jam packed with people who have driven from all over to eat there because the food was so good.
We paid a daft amount of money for such a simple meal but we both REALLY enjoyed it, free range eggs, proper chips and locally sourced ham, ah, simple pleasures.
Eating my lunch has been very pleasant as I have been able to reminisce about that happy time.
When Steve got diagnosed we tried our best to do lots of nice things, see our friends, spend time with people we like and with each other as we knew those experiences are what memories are made of, as I said, even the little things like a simple lunch can bring so many warm and comforting memories.
I realise I have not done a blog yet for yesterday, no excuse I just didn't feel like and avoided the computer last night.
Yesterday after getting up I decided to deal with the eBay stuff, long story short there was an issue with one item which we had listed (I say we because I am not taking the blame), basically we listed something in error which had already sold. I wrote to the buyer and apologised etc and set the refund in motion but imagine my surprise to get several really horrible messages back, this is AFTER I had explained the situation and with Steve dying.... Anyway, he apologised later and the issue is now resolved but like I said the other day, life goes on. The missing item is not a big priority for me as I have bigger things on my mind but other people don't have the same perspective on life as me.
Yesterday afternoon Mel came over and we went for a walk on the canal, it was nice to get out. usually we chat for hours at home so it was nice to do that but out and about as we got to chat and spend time together but we both got out and about too, it was nice to be "normal" for a bit even though I guess Steve monopolised the conversation, still i am not making excuses or apologising for it, right now I don't seem to think about much else, I miss him more and more each passing hour.
It's the nights that are the worse bits, I was more or less OK all day yesterday but as it got to 10.30 ish I was feeling tired, a friend text to say goodnight and I thought yes, bed, I need to go..... I didn't, I played silly games on the phone until around midnight when I realised i wasn't interested in the game, I was avoiding bed.
I went to bed and then it hit me again, just as it seems to every night and every morning, not loneliness but just a sharp awareness of loss. For all the hugs my friends and family have given me the only one I want is Steve's and I will never ever feel that again. Most of my friends have someone there to hug when they get to bed, or when they wake up, I don't anymore. When I feel crap the one person I want to turn to is not there. The one person who would know and understand how I feel, is not there. The person who understands my sense of humour and sarcasm is not there.... he's just not there at all.
I feel him in my heart and yes, people say he is "with you" but lets face it, it's now a one way street with one way conversation and how can you hug a memory? I guess in reality the tough bits are always going to be there, being without Steve is not hurting less as the days roll on but I am getting used to the feelings I am left with.
People say time heals, I don't believe it, all time does is allows us to adjust to and accept these new feelings. to know that this pain is "normal" and will not go away. I WILL learn to accept it though, if I don't then I have let Cancer win and I am NOT letting it take my life too, I am going to live on for Steve to make sure his legacy lives on.
Funny isn't it how Ham Egg and Chips can bring all this on....