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!

The problem with us nurses, so I’m told, is that we make awful patients.  We are excellent at giving out care advice – do rest, do drink plenty of water, do keep moving your legs, don’t sit in pain and try to be brave etc etc – but not always so good at taking it.  I think it is the need to continue to be in control, the difficulty in accepting someone else doing your job for you, the loss of independence.  But sometimes it just boils down to a teenage son having a completely different set of priorities to you!!

My instructions have been fairly straightforward – rest, gently start to mobilise and try to live as normally as possible during the trial without overstretching, bending, lifting.  Anything that might dislodge the leads from their position against my spinal cord is a no, no.  So vacuuming on day 3 is out!  I am really struggling with the fact that I seem to be the only one in the house who can see dog hairs.  Those of you who know us will also know, and have heard, our special needs pooch Samson – perhaps best described as a shaggy black mess.  Of course it is generally assumed that those house goblins normally vacuum up after our hairy boy, along with putting on laundry, ironing and a great list of tasks.  So imagine my son’s surprise when he found himself at the end of a hoover today when his mother became hysterical and threatened to undo all the surgeon’s good work because she could no longer stand the mess!!

I continue to feel benefit from the stimulator for my leg pain, but equally when it is switched on I do think that at the moment it may be increasing the itching around the wound site. Tricky!

I have been in touch today with a wonderful lady, Jan Sadler, who set up and runs a great website http://www.painsupport.co.uk. She sends out monthly newsletters, moderates a variety of pain related forums and gives us members the opportunity to make contact and become pain buddies.  Her wisdom and personal experience has seen me through some very difficult times over the last couple of years and the website is full of comments bearing testimony to the fantastic work that she does.  I remember very clearly about a year ago a fellow member, Tina, undergoing a spinal cord stimulator trial and writing a piece which Jan published.  I cried when I read it because this lady could have been describing me – her thoughts, her feelings, even the fact that she had been a nurse in a former life.  My last surgery, a revision of spinal fusion, had failed to ease the pain and I knew that the only course of action left open to me was a referral to St Thomas’ for neuromodulation.  Tina’s words offered me hope and an expectation, but also gave me something to give to my family and to be able to say “that is me and this is how I am feeling”.  So I am delighted that Jan has added a link to my blog on the forum, in the hope that someone else who is looking for information, reassurance or just some kinship might find this helpful.

When I climbed into bed Sat, I turned the stimulator up, felt the now more familiar electrical pulses rush down my side and into my foot and felt sure I was about to give John Travolta a run for his money on the Nightfever dance floor.  During our course, we were told that we must not sleep with the device on, so after 30 minutes off it went – and I slept. I’m not sure if I was just so exhausted, but sleep in chunks longer than 2 hours is something that has eluded me for some time now.p

Watching first David Weir, and then Mo Farah win the Great North Run this morning generated the usual quips around the breakfast bar – your turn next year, etc.  There are always so many inspiring stories that I do feel guilty for making a fuss and not getting on with it.  But it just isn’t as simple as gritting your teeth, grinning and bearing it.  So I have started to write some pages about Living with Chronic pain – to be found at the top of the blog header.

I have pottered about the house today, alternating between sitting and standing as I can’t bear for anything to touch certain areas of my back.  It is extremely sore, but worse still is the incredible itching from the sticky dressings.  I can’t even use a knitting needle like I would with a plaster cast. IT IS DRIVING ME INSANE…….

I am hoping that I might have some sort of follow up from the hospital tomorrow (Monday) to tell me when I need to return, as it feels like life is on hold.  The consultant probably wants to speak to the urologists first though, as he has something else in mind for me…….

More on that tomorrow as it is very late, the Stim has been turned up and it is now time to turn off and hopefully sleep!