26th September 2009 06.30
We had a lazy day on Friday after the panic of Thursday morning. I was making plans to sort out some of the things that needed sorting out but had not managed to do a thing not even the photos that I needed for the blue badge renewal. My mother had come over to help with the shopping and I had managed to get a shave, another thing that I was worried about when we had got the first call, I had unpacked some of the things in the bag but most things were still there. We talked about the call with my mum and I made some phone calls to enquire about putting my partner on my bank account and found out about my pension that could only be passed on to my widow if we were married, something that my partner and I had always intended to do but in the 22 years that we had been together had never got round to doing. All the things that I had not considered had been brought into the open by our visit to the hospital.
I wrote down my telephone lock code and all the passwords, email accounts logins and the telephone banking number but it brought to mind something that I had been told earlier in my life,
It is the things that you don't worry about that cause the most trouble in your life. The things you think will cause problems for you seldom do.
Planning is often used as a antidote to the randomness of how life can change and the events of the last few day had proved that and more evidence of this was to come. One thing that I had not done was to tell my eldest daughter that I had gone on the transplant list as she had only recently come back to England after a month in Australia and I thought I would let her get back to work and settled before I said anything. But a call out of the blue from my partner to say I had been taken into hospital was not the best way for her to find out.
So I rang her I asked her how she was and how she had felt since returning from her holiday she had just settled back into the routine of life but was unsettled and thinking about changes in the future I told her that I was on the active list for a lung transplant and that I had been called unsuccessfully once and that I wanted her to know in case I got another call ,she was shocked and I didn't realise how much until she became tearful .I wasn't prepared for that. I was filled with her anguish and asked her if she was on her own, her boyfriend was there luckily so I told her not to get upset and have a cuddle with him, told her that I loved her and said I would get together with her soon. She was upset that she had not managed to get to visit me but it is funny how quickly life gets past you in this frantic word and I knew that she had been working hard with her job and teaching can quite easily take over your life so I cautioned her to give herself time to herself and we promised to speak soon.
I went to sleep later that night to be woken a 6.30am with a phone call this time I knew what it was and the same coordinator was on the phone saying that they wanted me there again. This time it was different I was calmer but also more scared would this be the time? Nothing had changed and the same things were worrying me but in a different way I regretting not getting out to take my photos for my parking badge and knew that the problems with the bank could not be resolved I had intended to go to the bank on the Monday and change the account details to allow Liz access to the savings account where we have all our savings that couldn't happen now and I felt trapped by circumstances. The other thing that I hadn't sorted out was the payment of my pension should I not make it. It seemed after some enquires that the only way to get the pension paid to Liz would be if we were married and I was impotent to deal with that now that a possible transplant was on the cards again.
I went though the motions of putting things in a bag that had been taken out from our previous visit and after we had woken the kids they were quite calm and got some clothes on and were ready quite quickly. Everyone was calmer but the whole process was a lot more real and as we set of to Harefields I felt a sense of impending panic I took out my bible and read some passages and said a prayer to ask God to help us all to tell him that I was happy for his plan for me and thanking him for this opportunity of a chance at new life. We got to Harefields in a while and the journey was better for Liz because of the time of day and the beautiful sunrise that unfolded as we travelled I remember thinking is this could be the last sunrise that I see! Then quickly tried to suppress that thought and enjoy it I took a picture on my phone and then we were there.
We were directed to a ward upstairs where I had been when I had attended my 4 day assessment and shown in to a side room with a view across the hospital site in was spacious and had a TV and several cupboards and a couple of chairs. I connected my oxygen to the supply on the wall and waited for the inevitable of questions and forms to fill. The doctor attended to take a multitude of tubes of my blood again to match against the possible donor organs that were being assessed by the team from Harefields somewhere in the country as I sat there. Then we waited the pace of this visit was slower and less frantic but no less stressful I could feel the knot in my empty stomach tight and I wondered how long I would have to wait to find out if things would progress.
The transplant coordinator attended the ward and told us that they would know more by 11.30 and that we should take it easy till then. Easier said than done in that situation I couldn't get the worries I had about what hadn't been sorted out and a progression of thoughts popped in and out of my mind while I tried to reassure the kids about what was possibly going to happen while having problems keeping calm myself. The children had really gone though the mill with the two visits so close together and I felt terrible that I couldn't do anything to minimise their upset I cuddled them both and reassured them that what was going to happen if it did was the best thing to happen and even if it didn't go well I couldn't go on like I had been for very much longer and God was giving me a chance for a new life and it was in his hands now.
11.30am came and went and there was no news then the nurse on the ward attended to tell me that the transplant coordinator had been on the phone and said we should get ready by washing and getting shaved.
I didnt want to go down that route until I knew it was necessary and said so, but realised that it had to be done but it was like a final confirmation of the progression towards a point of no return the knot inside tightened again.
The nurse helped me as I washed and shaved my chest,underarms, forearms and groin and he told about what they would need to do to me and why those areas needed to be hair free at that point details I wanted to ignore. I felt weak and was reminded of the story of Samson in the bible who hair was cut and he lost all his strength. Afterwards I was offered a lovely hospital gown to put on with disposable underwear completing the hospital patient look. I was shocked by the lack of chest hair, a look that I hadn't had since puberty, it felt weird and I felt emasculated Liz helped by reassuring me but I felt very vulnerable and the knot in my stomach tightened again when the anaesthetist turned up to talk with me about the operation and what would happen when it went ahead.
He started to talk me though the process that I would go though in the operation. I knew quite a lot more than I wanted to from my days working as a theatre porter but having it described when you are that one on the table is quite different. He explained that they would site a epidural for pain relief before the operation started, then thought of going under became very real to me with the attendant thoughts of would I wake up and to what?
After he had left I really thought things were going to go ahead and I spent time hugging the kids and Liz and wondered if this would be the start of a new life or more problems. After what seemed to be an eternity the transplant coordinator came back to the ward to see me it was a no go.
It was the morning by this time and we slowly got ourselves sorted out for the journey back to Oxford.
We decided that there were to many things still outstanding and we needed time to sort them out we were in contact with Harefield and told them that we wanted time off the list for a while so that the problems with the bank and pension and we would have a couple of weeks and talk again.
Galvanised but the visit I threw myself into sorting out things and came to the conclusion that the best solution would be for me and Liz should get married so that legally she would be able to claim widows pension as my wife and the bank would give over any money to her without all the hassle it could be if something went wrong with the operation. It was not the most romantic reasons to marry but as we had been together for 22 years it was well overdue. I had in the past been down on bended knee and ask Liz to be my wife and she had said yes so I felt it was time to get on with it.
When I contacted the registrar I found out that we would not be able to marry for about three weeks so I booked the Oxford registry office and had a word with some friends to see if they were free to be witnesses and the marriage was set for 23rd October 2009 at 15.00.
We told Harefields to hold off on the list till we had sorted things out and they said they would be in contact at the after end of the month
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