Started to drive my car on short journeys. I did think everything was ok, I live down a potholed country lane so its quite violent and bumpy driving down it. I got over the shock of the bumps but have found that doing this a couple of times, together with driving and then sitting around or walking around causes the burning \ soreness inside where the district nurse a few ago ago described as the area where the prostate was removed - internally in the perineum area. Sunday I went to a scout workshop\presentation day at a local school , 10 mins drive away. Spent most of the day ( 9am to 3.30 pm ) sat down on different chairs , by the afternoon this burning had surfaced.
In addition to the discomfort of the burning, I now seem to be getting more and more what I would call 'healing' pain. This pain feels like where maybe I have been stitched inside. These discomfort pains are across the abdomen rather than down and are internal. Still getting a sharp pain when i cough or sneeze internally on the right side above the groin area - have had this since the operation , suppose it will go over time.
Lots of these pains are occurring with the extra movement I am doing in trying to exercise and also with sitting driving or in upright chairs. Maybe I am pushing down on the internals .. I dont know. Will just have to wait and see.
Sunday's day out also proved I really wont be ready for work yet. By lunch break I was tired, by 3pm I was shattered and nearly out on my feet but hadn’t actually done anything! When I got home I fell asleep. Could be the Anaemia that I was told I have post op due to the blood loss. Need to ask the GP how long I need to take the iron tablets for and maybe get my blood levels checked.
The arm pain is still here - going to have to get on with it and see what happens. Will update the GP next week if no improvement and see if anything can be done - maybe some light physio will help.
As the nurse in the hospital told me - "your body will tell you to slow down - pay attention to it ... " Well yes I am.
Am definitely not yet ready for work and all it entails. Still early days.
Great conversation with my NHS Clinical Nurse today who again told me to call her anytime for advice. She has asked if I can get copies of my consultants letters to the GP sent to her for my NHS Hospital records. She has left an appointment in the NHS diary for August 2013 as this would be a year post my last visit to their cancer service. She has agreed that from an erectile dysfunction point of view, keep taking the Cialis as prescribed by the GP and recommended by Mr Doherty ( this is the NHS NICE Pathway recommendation and what Shropshire recommend in my case ) - it helps with atrophy. She told me not to worry about the other aspects of the male reproductive system - its more important to allow the healing.
Saw a very worrying post on prostate cancer uk forum today - one chap like me living in Oxfordshire has been refused his ED medication as the PCT in that area has now down graded to Low Priority erectile dysfunction and these treatments on costs grounds. Absolute scandal. Its worrying enough having cancer and then the treatment, but to now have to worry that the local NHS may refuse to supply treatment for the side effects of the cancer treatment is awful.
What these pencil pushers don’t realize is the anxiety of ED and its impact on your quality of life. Furthermore, when people such as myself and others chose our cancer treatment it was on the basis that NICE , NHS and Medical Experts told you that the side effects would be treated. On balance , if we had known they would not then a different cancer treatment may have been chosen. Just got to hope that Shropshire don't go the way of Oxfordshire
Fabulous news for my surgeon/urologist Mr Alan Doherty and the Birmingham Prostate Clinic. He received a Highly Commended ( runner up ) in the HSJ Awards 2012 for Enhancing Care with Data and Information Management. He was beaten to first place by an NHS London system that could be rolled out national but still finished above other systems from:
Barts Health Trust
East Midlands Ambulance Service Trust, National Ambulance Clinical Quality and Research Groups and University of Lincoln
NHS North West London
North of England Cardiovascular Network and Digital Spark Ltd
The Royal Marsden and McKesson
Am really glad that I have the benefit of being part of this innovation in patient outcome management..
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