And so it came to pass that the days of public transport to King's College Hospital were no more...the time of the SatNav had come.
In fact, the height of the step into the train has become too much for Roch. We used to drive to the station and catch a South West train to Waterloo, walk across the concourse out to a bus stop and catch a bus the rest of the way to Denmark Hill. At first it worked out ok and it felt good to Roch to accomplish the journey but it's too much now.
Anyway, there's always a way around these things and so we got a SatNav which is incredibly simple to use. Andrew, Roch's MND research nurse, who is monitoring him for the Licals trial (clinical trial for Lithium Carbonate), arranged a really handy parking space for us for the day, and off we went. It was pouring with rain last Thursday and we set off in some trepidation. Roch drove and I think we only took two wrong turns, so we did well. More importantly, we both kept our cool at the hairier moments -it takes a while to get used to Mrs. SatNav's instructions but we soon found out that the word 'Recalculating' was not a good sign.
In a funny way, we look forward to our meetings with Professor Al Chalabi. A feeling of relief flooded me and I felt close to tears as he greeted us. He is interested, engaged and his expertise and the depth of his knowledge bring great comfort. He was really pleased with Roch and happy to have his prognosis confirmed thus far. He feels that the disease is progressing slowly and this is what he predicted, given the way Roch's symptoms presented. This is all good news, but it's hard for Roch to feel happy and grateful about it. He has lost so much already and life has become so much more limited for him. It doesn't matter that compared to most of Professor Al Chalabi's patients (most die within two years, some on their first visit have much more severe symptoms than Roch has now) he's doing so well. It doesn't feel like he's doing too well, to him.
I did feel cheered by the visit. For me, the news means Roch will almost certainly be around for longer than we had thought and that has to be a good thing. Of course, this also poses a very important question for Roch - for how much of that time will he enjoy a good quality of life? This is a question even Professor Al Chalabi cannot answer.
I was listening to of all things - a 'happiness expert' on the radio the other day. For a fee, she will fix your life so that you can be happy and reach your goals! She said the first thing we need for happiness is certainty and I couldn't help thinking about our situation. Well, there's one thing we're certain of, but then that's a certainty present for every living being. We don't know quite how we'll arrive there, but we have a better idea than your average healthy Joe. However, we're lucky I guess, because the second thing we need, according to our 'happiness expert', is uncertainty. Well, there's plenty of that.