I was a bit lost the last time I wrote this as being 18 months post surgery and still experiencing pain was beginning to grate. I've mentioned before that I am fortunate enough to have an excellent GP who referred me to an orthopedic consultant and the visit to her was enlightening, just before this though I had to have an MRI scan - which I found really traumatic
Having had 3 or 4 CT scans I thought the MRI would be straight forward but hadn't banked on the high pitched noise and my nerves which combined meant I ended up in tears asking them to stop it. So embarrassing...they had to restart once I'd composed myself. I'm still not sure why I got so upset as having gone through so much already I wouldn't have thought another scan would phase me but it hit me all of a sudden, freaky.
The results came through while I was with the orthopedic consultant and thankfully there was nothing irregular showing other than expected 'wear and tear'. I'd already learnt that my time on the operating table had meant being twisted and turned and that my kidney had been more difficult to remove due to the tumor hemorrhaging and causing it to stick...gross. So I can live with wear and tear, literally.
Fast forward to my first physio appointment and there was the biggest revelation, I was crooked! When asked to measure either side from the bottom of my ribcage to the top of my hipbone, the left hand side was significantly shorter than the right. I had in part been protecting my wound and then leaning to the left which was placing strain on my right hand side.
I can recall vividly the day after my surgery being asked by the ward physio to climb out of bed and walk to the window - 3 beds length. This had been the most difficult and excruciatingly painful experience and I'd had to sit at the end of each bed. Once accomplished, this was the extent of my post surgery physiotherapy and I was signed off. Although I spent a further 5 days in hospital I had no further physiotherapy and neither was it discussed.
Once home I'd struggled to walk for some considerable time and so can see how I'd begun to lean over and protect the area most painful. I'm not going over again the issues I had with my consultant surgeon but lets just say his dismissal of any subsequent pain having anything to do with his surgery was absolute and final. This led to my dismissal of him and the reason I switched hospital trusts.
I have continued with physiotherapy exercises over the past 3 months and at my last appointment this week I was signed off. I think having shown that I was committed to doing the exercises regularly and the improvements these have made both led to my sign off as I have tremendous resolve and a great deal of will power to get back to 'normal'. The physiotherapist has given me a new lease of life in as much as I'm no longer afraid to try exercises and have a better understanding of where the pain is coming from. For this I am very grateful.
As far as pain goes I'm not entirely free, but there are other reasons for this. Going back to when the pain was unbearable, even to sit, I was prescribed Gabapentin which is, amongst other things to treat neuropathic pain such as I was experiencing. My dose gradually increased as the pain did and I was taking 900mg per day on top of which I would also have Tramadol when it became unbearable. From the day I started physiotherapy and learnt about my posture problems I decided that if I could correct what was wrong then I could wean myself off the painkillers. And I have.
Over the past few weeks I have gradually decreased the dosage until last week when I stopped taking them altogether.
This is something I'm sharing on here before even telling the doctor, I've made an appointment but I needed to see if there were consequences before I confessed. I can't say the pain has gone as I can feel it even now however, I am managing it better. I truly believe that much of this is down to maintaining a positive outlook and a little is me being able to identify where the pain is and controlling it with movement. The one thing I couldn't face was the thought of being drug dependant indefinitely. Before I became ill I hardly ever took anything apart from the occasional anadin extra (usually for a hangover). Now I don't drink and I want to be mindful of what other toxins my remaining kidney may have to process and Gabapentin had to go.
I have every intention of continuing with a fitness regime as my confidence has grown with the physiotherapy and today I started yoga classes. I did attend one a few months back but just wasn't ready as I didn't know what was causing the pain or if I might be exacerbating it. I also began running last October and now average 9min per mile regularly running 3 times a week.
The next hurdle will be my 2 year scan in March but once I've skipped over that I'll be back on the straight and narrow, no turning back.