Saturday, 21 June 2014

Eighteen Month Later. Still Waiting.

I never thought this day would come but it has. Today I have waited exactly eighteen months on the transplant list. I know there are people out there who have waited longer, and I know there are those who will never get on the list but it is really hard not to focus on myself and feel down.

The problem is I don't know whether it is better to have a false alarm or not. If I hadn't had the false alarm I'm not sure I would feel quite as bad as I do today. I was just getting my head around it never happening. I was getting on with my life without the shadow of transplant sitting on my shoulder. I'd freed myself of the tyranny of the phone. Life was as good as it could get and although there was a sadness it was a bearable one. Now I feel as though I'm back to square one. I now know what it feels like to have that extreme hope, joy and relief all mixed into one, and I want to feel that again so desperately it actually hurts. Worse I'm now tied to the phone again, jumping at an unexpected call, fretting over running out of battery, checking the volume to ensure I hear it even in the depths of sleep. Last year I went down to Wales perfectly relaxed, safe in the knowledge the call wouldn't come. Now I'm fretting that it will and that is making my trip a reason to be anxious rather than happy. I know Papworth will be able to collect me, from whichever part of the UK I happen to be in when the call comes, but the fear of missing my chance persists and gnaws away like an insect burrowing under my skin. I hate it!

Thankfully I have a chance of distracting myself today. The weather is beautiful and I'm hoping that this afternoon I will be able to sit quietly on the decking with my music plugged in my ears and my paints in front of me and just doodle. Both Peter and Andrew are around the house so if the phone does go I know it will be answered, which takes the pressure off. With a bit of luck I will be able to resist looking at my mobile every five minutes too.

So on the hottest longest day of the summer so far guess what I'm cooking? Yes a roast dinner! I was rummaging around in the freezer yesterday checking I had peas before going shopping. In the process I took several things out of the freezer and placed them on the counter to ease the search. After establishing that I didn't have peas I went shopping and returned to find a huge leg of pork happily defrosting. It was too far gone, it was a warm day despite being overcast, to go back in the freezer so I've had to let it defrost and am now having to cook it. I don't really mind but it is going to feel strange eating a full roast out on the decking. My spaghetti will have to wait until tomorrow.

While out shopping I came across two new teas I'd never heard of, let alone tried. Being a bit of tea buff I bought them to try out. I will let you know how they taste once I've opened them, at the moment I have four different teas on the go so I really should finish at least one of them before I embark on a new one.

Andrew also made a purchase yesterday and one I am really happy about. A new pair of protective trousers to wear on his motor bike. The ones he had were not, to my mind, that protective although they did have the pads around the knees and shins. This pair also has pads around the hips and is also waterproof. Although I still have kittens every time he gets on the damned thing at least I know he's better protected now. For those into bikes his is a Suzuki Bandit 650, nope, no idea either, all I know is it's blue.

Right better go and see how dinner is doing. Next blog tomorrow.