Waiting is hard, but it is one experience that is shared by everyone who at some point has to have something done in hospital.
This week my wife was due to have an operation. Having waited for the appointment to come through (actually much sooner than we’d expected!), she then had to wait for the day to arrive, and finally sit in her very attractive nightgown and hospital pants waiting for the doctor to come and tell her when she would be going down to theatre.
After all this waiting, it was then very frustrating to be told that her operation had been cancelled and she would have to go home and wait some more for another date to come through! Argh!
But for people like Andy with VHL, this isn’t just a common experience, it’s normal life. Every day there seemed to be an appointment or procedure or something VHL-related that he had to attend. There were kidney-specialists and brain-specialists and eye-specialists, then there were the genetics specialists and, as he became more disabled, the occupational health teams and physiotherapists. There were speech therapists and district nurses, community health visitors and so it went on. If it was all added up, he must have spent days, weeks, even months of his life waiting in hospitals! An endless round of health-related appointments filled his diary and his life revolved around them, always waiting for the next one to come through.
None of us like to be kept waiting, but I remember at the end of my first day on the walk4andy having to wait for my lift back to Carlisle. It was a boiling hot day. My phone had died. The church in Burgh-by-Sands was locked and so I couldn’t fill my time with having a look around. Instead I took off my boots and sat on the wall in the shade. I probably sat there for the best part of an hour or more. It was liberating actually not being able to do anything and I was struck by the creeping feeling of contentment which had grown on me as I walked alone across the marshes. There was nothing I could do but wait.
I’m not very good at waiting but maybe I can learn. Andy always seemed quite relaxed about having a diary full of waiting time. Perhaps he learnt to live in those moments rather than always feeling that they were taking him away from something more important. Perhaps what I need to learn is that this moment, this time, is what matters, and we don’t have to wait to make the most of it.