The waiting game

When you're just sat waiting for the phone to ring then you look forward to any concrete dates and deadlines. One of those was yesterday - I'd been looking forward to going to Kings to meet the surgeon and anaesthetist and signing consent forms. Obviously I'd kinda hoped I'd be transplanted before I'd reached that date, but at least it was something that would get me more ready for the op.

I'd been feeling quite washed out over the weekend - my energy levels are just terrible at the moment. I went to work on Monday morning but mostly just sat and stared at my computer screen. I went over to my Dad's at mid-day to have some lunch then headed home to have a quick cuppa before taking the train over to Kings. It takes about an hour, and it was bloody freezing! Still, I got there about 4pm with 15 minutes before my appointment.

There was immediate confusion at the liver outpatients reception when i arrived, and they asked me several times if I was sure about the date. Believe me I was *100%* sure that I'd been told to come today. Eventually someone in the transplant office came to apologise that she'd managed to give me the wrong date as she was looking at 2009. I just felt so deflated I couldn't even be bothered to complain much about it. Plus I don't think it would have achieved much.

So they've given me a letter with an appointment date of Thursday 18th instead. Again, I'm hoping I'll go in before that date, but then this process is just endless!

I HATE the fact that they get annoyed if I ring up to ask what my current position is on the waiting list. I KNOW that no matter what the position is it doesn't guarantee that we'll all be seen in order, and I'm completely happy that they can't give me a date. I'd be quite happy to just be told how many people they've treated in the last week or two, and what position I currently am.

Disappointingly we've now reached a time where if I go in any time soon then I'll be in hospital over Christmas. Though I'd still much rather that than having to wait much longer. I'm definitely going downhill a bit at the moment - I've just taken another day off work today as I slept so badly. I'm sure some of that is nervous stress about this bloody operation.

The stupid thing is that I'm not actually particularly stressed about the op. itself, its just the waiting, and waiting. I'm sat willing the phone to ring, then jumping every time it does, then dealing with disappointment. I keep not planning on going out or doing things with friends as I'm half hoping that I won't be able to keep to any organised time anyway, then as I get closer to the time I feel deflated that I've still not heard anything so I start thinking I'll just sit at home by myself in any case. Its stupid, I've had some lovely evenings, and the last thing I want to do is really let myself get in to an 'ill' mentality.

I've never been through anything like this before. I feel just so powerless and for someone who is a bit of a control freak like me, its just a nightmare. It's hard to believe I can still find new ways to dream about the operation and the 'call' each night but I'm managing it, and I'm waking up disappointed every morning that it hasn't happened.

Strange thing is, as my brother pointed out, when this is all over, I'll look back and it'll seem like the operation happened so quickly. But, for now, the wait goes on...