The journey to St Thomas’ hospital was appalling. Take school pickup, add a huge downpour of rain and it makes for one almighty traffic jam on every major artery into the capital. I wasn’t actually sure what this follow up was for and who I would see – after all the letter telling me my appointment was 4pm on Wednesday only arrived at 4pm on Tuesday!
Fortunately we were able to park – the parking for blue badge holders is free at both St Thomas’ and in the NCP at Guys’ – and I was greeted by one of the nurses who had helped on the pain course in May. She took my dressing down, the routine swabs for infection were taken at the wound sites and the area was redressed. Apparently the art work that Mr P had drawn last week will not wash off……I had wondered if that was a permanent marker that he was waving around in theatre! The appointment was in 2 parts, as I then needed to see the neuromodulation Clinical Nurse specialist (CNS) and a doctor. Steph, the CNS, had run a session for us at the friends and family afternoon, so it was nice to see another familiar faces. She had various assessments to make regarding my progress, including pain scores, coverage of my pain area by the stimulator, sleep patterns and how I felt about the success of the stimulator at that moment.
Various people have said to me that surely everyone will say that they have had great benefit, even if it isn’t the 70% reduction in pain required! The team are able to use a computer to “talk” to the electronics that are in the external power source implanted for the trial, and this gives them a reading of your usage, timings, the power level used. There can be no secrets!! So Steph “talked” to my device, but not before saying that she appreciated it really was still very early days as I am still recovering from the surgery on Friday. I think that yesterday was the first day that I felt the surgical pain easing. The plan is now to continue with the trial and I will return to St Thomas’ next Wednesday, with a view to having the next stage of the surgery at Guys’ on next Thursday or Friday. Fingers crossed that the swabs are clear as any sign of infection will require removal of the tunnelled electrode, as the risk to the spinal cord and thus brain is too great. Surgery is required for both continuation to full implant or removal if the trial is deemed unsuccessful, so either way I have another post op recovery to look forward to.
We left the clinic at 5.45, the heavens opened and we really could have done with wellie boots to retrieve the car. The boys had been left at home in charge of cooking dinner – no comment! – so rather than sit in traffic again we parked up outside the Royal Festival Hall and braved the elements to seek out a restaurant on the South Bank. It was hard to believe that just 10 days ago we had been on the beach in Bournemouth, for the rain was lashing against the canopies and it was difficult to see through the river mist to the opposite bank. By the time we arrived home last night I was shattered and felt like I had been hit by a bus. The journey was fine – just don’t get me going on some of the daft things & risks certain London cyclists take – but R&R was desperately required!