You must make the effort to talk to people in the waiting rooms. Everyone sits there looking gloomy. We always try to chat to anyone and everyone. Lots of patient have good news to tell, and by sharing it amongst the Outpatient 'family' (other patients, nurses. admin, doctors that you have all met lots of time) it can help pass the time, lift your spirits, and make you feel that it is not just you. We all become too self aware, and pre-occupied with ourselves. There is real hope out there and the team does its best to make you feel at ease and be positive.
It can be much harder for the younger patients, as they always seem more upset, nervous etc. This is understandable as they should have a long life to look forward to and diseases like ours can change this potential. And in fact they have far better chances of recovery than older people. So do spend extra time with them.
I am doing really really well. That is what the Doctors and nurses who know me say. I am starting to come off some of the horrid tablets. I am able to do more each day and I am generally feeling more and more normal but I am aware I still have a long way to go.
Even with the Hickman line in, I think I will have a go at driving the Mini soon. Yesterday we sat in a cab in London with the strap over it and it felt fine.
I had a bone marrow biopsy, blood tests, and two lots of blood that took all day, so in the afternoon we watched a movie on Dad's computer with earphones on.
Dad is doing well too - no worsening off his figures. We watched another film on the train back home. We were both really tired by the time we got picked up from the train but very positive.
Love
Roz
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