Getting organised and trying to smile

I guess I should update on last week firstly. On Thursday as you know if you read regularly it was 12 months to the day since Steve was given his diagnosis. It was a tough day but I was kept busy so it sort of distracted me. Work was very busy and at night I went to the comedy night I mentioned some weeks ago in my blog.


It’s an annual event and Steve and I had tickets for last year, Steve didn’t go in the end as the event was the night after his surgery but he had insisted I go. It was a good night both last year and this. This year I did end up spending part of it with tears rolling down my face, just little things which reminded me of Steve again. I guess there will be more things like that to trigger me off for a long time to come.

Friday was an OK day. Work wasn’t great but, in part, it is because I am really not “with it”, my mind is obviously on other things. After work I went home but then decided to go out to the shops as I needed to get a few things. I got home around 7ish and spent most of the evening sitting and talking to my parents. I was too tired to blog and again, not really with it. I didn’t even put my computer on.

On Saturday I got up and decided to clean the car. I spent a while polishing it and then vacuumed it and made a few adjustments by changing the interior bulbs from the standard white to blue. That in itself sounds like an easy job but it was fiddly and involved me spending quite some time trying to resolve an issue and resulted in me having to take the door apart and take the inner panel off but, I was satisfied with the end result so that’s OK.

In the afternoon a friend called around so, after I had a shower we headed out to Botany Bay, a local place which is a garden centre but also has some artisan stalls, gifts and accessories etc. I bought a few Christmas decorations, I know it is early but I am being organised. I’m not going mad with decs this year but I have to still “do” Christmas as Steve would have wanted it, he loved the way I do Christmas and I loved seeing him so excited.

Saturday night I ended up getting some food and wine and taking that round to a friends house. We sat and chatted for ages and allegedly supped 4 bottles of wine. I didn’t see the empties so because I am not a boozer I would insist we only shared 1 bottle…. I wonder how many people would believe me?

On Sunday I was late getting up. No hangover I was just tired as I got home after 2am and then had to make the bed as I had stripped it on Saturday morning so I was late getting to sleep.

I chilled at home yesterday morning and then headed out to the shops later in the afternoon. I did a little Christmas shopping, it was quite nice really to be out and about and I only ended up getting a few Christmas things as I don’t need anything for myself. I even bought a prezzie for a friends birthday later this year, I’ve just realised too my Sister’s birthday is before that so I should look for something for her too, another excuse to go shopping.

Last night I sat and looked through the things I have bought already, a lot of things that I bought with Steve too as he also liked to be organised. I just hope people like them. We try hard to get thoughtful gifts but sometimes I wonder if it would just be more appreciated if we bought the same old thoughtless tat that seems to fill the shops at Christmas.

Today I have been at work. It’s been a tough day really but I have managed to stay focussed. This time last year we were living with the aftermath of telling Steve’s parents and our wider circle of friends about Steve’s diagnosis. Steve’s blog entry for last year said “Today has become my hat day”. Because he knew he would lose his hair with Chemo and Radiotherapy he decided to buy hats as he would be bald in winter. Steve accumulated a few hats at this time but he mainly wore the same few.

He had planned that Monday 4th October would be the first day of the rest of his life, more about that tomorrow but for now I’m going to sign off.

Bye for now

On this day 12 months ago...

It’s been a few days. Not all bad. Today I have felt a little numb. But, firstly to catch up on the saga of British Gas. Following my complaint submission I have still not received a response from them. Their policy states I will receive a reply within 24 hours, so far it’s three times that so tomorrow I shall be re-submitting my complaint and highlighting their inadequacies yet again.


On Tuesday evening after work I tried again to resolve my Internet and printing issues. I was really angry and highly stressed. MY Mum tried to help, she came up with all sorts of solutions, things I had thought of already but this also got me stressed, I just wanted to be able to fix it, I didn’t want to talk to anyone about it and certainly didn’t want to speak to some overseas call centre who would barely understand me and whom I would struggle to understand.

Eventually I relented and called Virgin. I was relieved to find that my call was dealt with by a nice Scottish man at a centre near Glasgow. He was wonderful and managed to get on to my computer remotely when I connected the Ethernet wire and sort the problem. Basically the technology employed within the workings of the hub was newer than the drivers installed on my laptops so, both laptops could see the hub but could not communicate with it. The guy managed to update those and assured me that once installed then they would be able to connect to the printer and my wireless printing problem would be resolved too.

After I got “connected” I had to go out and sort a few things. When I got back later and finally settled it was after 10pm so I was slightly hesitant about raising my stress levels again before bed by trying to connect my printer. The wonderful Scottish man was right, it connected no problem at all, I was back in the land of the connected and I felt better knowing the problem had not been my incompetence but a software problem which I couldn’t possibly know anything about unless advised.

Yesterday evening, (Wednesday) was an OK sort of day.  Work was OK I guess but after work I had to sort out my eBay parcels and get them to the post office.  After that I called around to see a friend.  We chatted for a while and he gave me his view of where I am "at" at the moment.

It was interesting to listen to a different perspective, something which has obviously been discussed in other circles but not in a bad way.  It was interesting to see how there is a perception that some things / people / circumstances etc are hampering my ability to "heal" and make positive moves to re-construct my life.

Some of the points raised were completely valid I felt and I agreed.  I did state my reasons for allowing the circumstance / situation / issue to continue and although on one hand I know I could be selfish and only think of me but Stephens life touched so many and it is not only me dealing with his loss.  Part of the points raised I felt were not relevant and I explained why and hopefully I made sense.  It makes sense to me.  Simply put, some things which seem to be negative are in fact positive some negatives I agree are negative but I have reasons for not addressing them right now so it's a case of taking a little rough with the smooth.

On the way home I called in to the shop and bought some wine, Odd but I am sure bottles are getting smaller, only 2½ glasses from one bottle..... Really though I was being piggish, it was a 750ml bottle, my glasses are just a little too big I suppose.

After that I decided not to open a second bottle and headed for bed.  I was tired.  Then it hit me.  I can only explain it as "washing over me" much like someone throwing a bucket of water over me.  I was consumed by grief and started to cry.  No good reason, no trigger song or word or picture it was just there.  I sobbed myself to sleep last night.

I suppose if I am honest I really do know the reason.  Today, 29th September, is a year to the day that Steve was given 12 to 18 months to live.  He managed 8½.... where is the fairness in that?  To be told such news at just 31 years old.

That day was easily the worse day of my life up to then.  That was surpassed a few days later as I had to break the news to Steve's parents that their little boy may not be alive in 12 months time.  Steve's parents went away on holiday before his surgery and got back after his biopsy results it meant, in reality, that Steve had a few days to accustom himself to the news before breaking it to his parents.  We dumbed down his diagnosis and treatment regime when his Mum called.

Steve later said that through that period and beyond I was his rock.  I didn't feel it but I knew I had to be for him.  I took up the role immediately without asking or being asked and it started just after the news was broken to Steve.  He asked, "how long have I got?"  To be told "I don't think now is an appropriate time or place to ask that question..." really annoyed me.  You have just told a 31 year old man he has an aggressive and malignant brain tumour called Glioblastoma Multiforme growing in his head and then don't think he should ask about his future?  I was probably more than a little patronising in my response, tinged with anger and upset as Steve's hand was in mine and he was gripping it with all his might and I just wanted to stop it all for him and for me or for someone to jump out of a cupboard and say that it was some sort of sick joke.

She told Steve.  It was no joke.  I don't know if being told you have between 365 and 547 days to live was more of less than we anticipated but that 10 minute walk back from the hospital to home seemed to take an hour or more.  With my arms around Steve to support him and comfort him and both of us sobbing uncontrollably as we walked through a busy hospital, it's grounds, through the village and along our street we managed to get home where we sat and we cried in total disbelief.

We were unable to talk, but after some time Steve composed himself and carried on vacuuming the lounge which he had started before he left for the hospital.  We told a few people. We were careful though as we didn't want Steve's parents to find out via Facebook or from another well meaning friend or relative.

A mixed response would probably best describe how people took the news.  Much disbelief seemed to be the "theme" over the following days but with one notable exception, the text message that read, "Oh you might need a few days to get your head around that" was one such comment which felt more like a pat on the head that you would give a small child who has fallen and cut their knee.  No prior or further message of support or even concern, just that.  Hardly appropriate for a 31 year old man who has just been told he is living with a death sentence through no fault of his own and there is nothing he can do about it.

That's is why these past few days have been tough.  I have replayed those days in my head hundreds of times in the last year, the past months and in recent weeks.  It still doesn't feel real that I will never see him, feel him, hug him, smell him, touch him or kiss him ever again. 

Here is a link to Steve's post on the afternoon he was due to collect his results, Click Here and then the first proper blog entry after his diagnosis Click Here

I will write more in the next few days but right now I am knackered.  Today has been a long and busy day and this post is long enough....

Goodnight xxx
 first blog entry after