Day 27

Rain,rain.rain today. Thought we was going to be house bound today. We decided to go shopping!!! First time for me for weeks. Mikey would find that almost impossible to believe. His mum not buying a thing for that long nah impossible.
The truth is i just haven't been able to drum up the enthusiasm. Even today it feels like a chore. But i do need some proper running gear. Cant keep doing this walking in jeans or the shorts i have.
We head off to Kings Lynn with the hope of perhaps having a good walk from Hunny to Heacham.
However the weather today was not at all promising.

Managed to get some Capri running Capri pants and i have to say they are black moisture something so very good in black and vibrant pink. Mikey would cringe!!! they looked pretty fab and a great fit size 10. Until i got home and the label inside said 14. All i can say is they must be cut very very small. I also got some running tops so all kitted out now.
Legs go faster cos of the shiny fabric legs don't stick together now so no chaffing. Ha.
Well it was pouring of rain and Tim said we will have McDonald's again!! but we went wrong in the traffic and headed of to sunny hunny and it was!! so had our lunch and came home. Tim cleaned the car again. No surprise there and i went to the library.

Went for a walk and we spoke about Mikey. I realised that we have had very little verbal conversation with anyone about Mikey i have spoken to Joni but other than that no one else. We have been on holiday a week now and have only spoken to each other Tom once and shop assistants. That is so sad.

Realised that although i go to work and talk to people there. We only communicated with Mikey and Tom.
We have no friends who we socialise with. There is only us!!!!
It makes me wonder what will happen if one of us is left alone.
Its a wonder that we haven't become fed up with each other before now. Maybe that's what Mike said when he used to say mum you don't listen, when i join in a conversation only to have found out that Tim and mike had had that same conversation 5 minutes earlier. I shut things out and live in my world. It must have been more interesting. They always talked about sport, cars or programmes they were both interested in i must have been feeling left out.

What do Tim and I have in common. Well nothing really. Oh my goodness!!! I go to work, come home go for a walk, used to read because i didn't like the same TV programmes. In fact don't watch TV much at all.
Tims main interest is cars. I know that once this car is 12 months old i will endure another 12 months of what car shall we have next year and he will visit garage after garage and put them up on the Internet to look at and expect me to show some interest. Well i don't care as long as it gets me from a to b and starts i don't think about them at all.

I think we are in for a long hard winter. I try to do things but am too knackered when i come home from work. Still will try to be a bit more positive!!! Conversation well if Tim hasn't seen anyone he will have nothing to tell me, he does need to get out when I'm working.

Still haven't had the bill from Mark so i will go up Monday again. He said on Friday that he wasn't worried he knows we will pay him. But i also need to sort the ashes out. What happens will depend on Claire now.

Thinking of Mikey tonight made me sad but Tim keeps saying that he made the decisions and we cant change anything. No amount of worrying now will bring him back. Tim said he wished it would but he knows it wont and we have to accept it. Tim says he thinks about Mikey all the time and misses him so much especially his visits just the two of them.
Tim also mentioned the visits to the specialists at Edith Cavell and Addenbrookes and how Mike thought Claire was going with him and then changed her mind.
The appointment at Addenbrookes on the 6th August was the most disappointing for him we know. Claire initially was going, we offered to go but Mike said only if Claire cant go. Then mike rang us to say she couldn't go and when we visited that evening he said Claire had said it was out of her way as she was camping out at Peterborough that weekend.
We met Mike at the hospital and you could tell he was hurt that she wasn't there but he said that she is only a friend now and his carer so she didn't have to come. Angie the CF nurse was with us too.
It was awful for him. The Consultant was really very good and explained in detail Mikes problem and his problem regarding Mikey's health.

Mike had 3 kidney stones one they felt that they could get to and the other was rather high up in the kidney and they may be able to get that, they though yes quite possibly. The third stone the biggest one would prove to be the hardest and the equipment they had would not be able to get at. The result being that Mike would possibly need another operation. Mike asked if it could be done by giving him spinal anaesthetic and the surgeon said no. It would mean general anaesthetic. The stone was so high up that if the gave spinal they would have to paralyse his chest to get at it and that would not be possible he would need to lay on his tummy to have the stone removed surgically.  The consultant said he was worried about giving him general because there was a high risk that Mike would not make it through the surgery. He was also worried that he had his lung collapse. Mike then said that Papworth thought now was the best time because he was at his well est.
Mike also said he had to have this operation because otherwise he could not be put on the transplant list at Newcastle they said this has to be done before that can happen. Mike said the transplant was his only option for him to be well.
The Consultant said he would have to speak to someone at Papworth and both Mike and Angie said Helen his consultant would be happy to speak to him even though it was her day off because it was her daughters birthday party.
The Urologist went to phone her. We sat in the room trying hard to hear what was being said but couldn't really hear anything. Mike sat in his wheelchair looking so very very sad and desperate for positive outcome.
When he came back he told Mikey that he had spoken to her and that they felt that the risk was worth the try as Mike was probably at the best he will ever be. The consultant said he would also try to speak to his anaesthetist to discuss the case with him.
We waited again. He came back and said that he would do the operation but had to be sure Mike understood fully what may happen and would he like to go and think about it first. Mike said he had no choice. Mike said I'm going to die if i don't have the transplant and i cant have the transplant if i don't have this operation i will die either way, but it may be OK.
The consultant said we can do the op next Thursday. We will have you in the morning of the op. He asked if a nurse from Papworth come come with him as the nurses at Addenbrookes not familiar with his meds and treatment etc. Angie said yes that was fine someone could come and stay until he goes into surgery.
When Mikey was given the form to sign for agreement his hands were shaking and both Tim and i would have given anything to take it from him. We thought the risk was too high but Mike had made his mind up.
We were asked if we had any questions and Mike just looked at us as if to say no ! So we both said no we didn't have any questions. I was trying so hard not to cry but Mike looked at me as i was wiping my eyes as if to say don't you dare.

When we came out of the room the transport was waiting for him. So Mikey said i will see you later and was pushed away to return to Papworth. Hoping that he would be able to go home on Tuesday but now doubtful because he thought hat they would want to keep him in until Thursday. Tim and i were both upset and very worried because we thought the risk was to high for him but had to respect his choices. Coming home all we could talk about was how he looked in that chair, so sad  and looked as though he may cry but was holding his emotions in and yet so brave at the same time. He looked as though the world around him had fallen. We thought that it was in some way because Claire wasn't with him. What a thing to come to terms with that he knows that there is a very high risk that he would die next Thursday. How many people have to cope with that. At 25 he had made this huge huge decision. God only knows how he must have been feeling.

When we got home Tim said I'm going back to Papworth i asked him if i should come too and he said no he wanted to see Mikey on his own.

Tim returned later and said the first thing Mike said is what are you doing here. Tim said he told him he was worried about him being on his own after having that news. Mike said he was fine and that he didn't have a choice to make. There was no option other than to have the operation even though they told him the risk. Tim asked him if he had told Claire and he said yes. Tim asked if she was coming up to see him and Mike said no shes camping out at the festival with her friend Claire at Peterborough. We thought once she knew about the op she would spend every day with him. Mike hoped to see her on Tuesday he thought.

I had a phone call from him on Saturday the 7th and he asked if dad come and fetch him home for the afternoon could he come at about 1130. Tim said of course he could but it may be a bit after that cos he was just finishing the cat. Mikey said that's fine.

I cant write anymore tonight and i cant do any to my story either. I will continue the next few days later and will write up what Helen said at the meeting after Mikey passed away. But that for another night no more today.