“Kidney cancer broke my leg”. That’s what I say to anyone who asks me “what happened to you” as I walk around on crutches and I get some strange looks. I was diagnosed with a kidney tumour in 2011 and had a nephrectomy in August that year. The urologist was very confident they had got it all, and I was monitored with alternate 6 monthly CT or ultrasound scans, all of which showed nothing. I had no idea I had secondary cancer until I started to develop a limp in August last year.
I would trip over something and it would hurt, but I thought it was just a muscle thing and I soldiered on, as I was full on renovating our investment flat for our son to move into. Then the limp became worse and I had to use a stick.
Right, I thought, time to get this checked out. I went to the doctors on the Friday who manipulated it and arranged for an X-ray the next day. I never made it – that Saturday morning my femur broke as I was sliding across the bed to get out. It was an experience I wouldn’t wish on anyone. After 36 hours in traction, I had an operation to fix the leg with a long rod through the femur, with bone screws top and bottom. Apparently the met was large – my best estimate from the x-rays is it had eaten a 6cm hole in the bone.
Once back on the ward, as well as coping with the leg, we had the consultants visit and the gist of the conversation was ‘that’s its now, you’ve got secondary kidney cancer and there is no cure” . I guess they were thinking it must be widespread if its that big in the bone. They were dark times indeed. My wife and I were devastated. There was not one reassuring word and the whole implication was I haven’t got long. Medical staff were astounded when both CT and bone scans showed that the only met was the one in my femur, so perhaps not on my last legs yet (sorry about the pun!)
I was given 5 doses or radiotherapy. I never really understood why buy they said it was for the pain, but once pinned I didn’t have any bone pain.
So I was discharged after 2 weeks, with a whole new landscape in my life – I was told I could only put partial load on the leg, so I had to use crutches. I had limited flexibility and little stability in the leg, so I had to sleep downstairs in the front room (or try too- my mind was in turmoil and at a low ebb). I couldn’t use the stairs, so had to flannel wash in the utility, luckily we have a downstairs loo and sink. My wife was amazing during in this time doing lots.
After the radiotherapy, I saw the oncologist, who gave a little more cause for optimism in that she was seeing patients who had been on Sutent for 3 and half years – she said it was lucky it was available as the previous drugs were rubbish! And I was young -57 at the time.
After 3-4 months of not going into decline, I made a mental adjustment and just forgot at the cancer and got on with things as best I can. I am lucky that I retired early so I don’t have the stresses of work to deal with.
Fourteen months later on I am on my tenth cycle of Sunitinib. The first couple of cycles on a regime of 4 weeks on tablets and 2 weeks off were tough – very sore mouth, ulcers, difficulty swallowing, dire rear, also dry mucus leading to bunged up nose, leading to lost sleep, got an abscess, a lot of fatigue (although not debilitating). It was suggested I could switch to a 2 weeks on and 1 week off regime, which I did and I instantly found this much kinder and easier to manage because the side effects do not have time to build up and this is much easier for me to deal with both physically and psychologically.
The side effects are now manageable and follow a predictable pattern, mainly dire rear and rough mouth. Omeprazole fixed my swallowing issues and reflux that became quite bad.
I’ve just had a CT scan and all is stable, so that’s another whole year since we discovered its secondary – so I think I’m going to be around for a while yet.
I’ve regained full use of the leg, the muscles are strong and the flexibility is back, but I still can’t walk without the crutches , as there is a bit of the pin in my leg that is unsupported by bone any they fear it may break with metal fatigue. But I can get about well – walk faster than most, up to 2 miles. I am active and on my feet much of the day. I can now get upstairs – so things are more normal. I can drive and ride a bike, which I love (although I have to strap my crutches to the crossbar!), but I can’t race my sailing dinghy, which I miss.
I have adapted so I can do lots of tasks, but all the ones that require walking and using both hands I can’t do so my wife has to. The last x-ray looked like there may be the beginnings of repair of the bone. However, I am now mentally adjusted to the fact that it could be 2-3 years, before I can throw the crutches away.
Until a recently, I had kept thoughts of the cancer out of my head, then someone we knew got kidney cancer and recommended KCSN – I have realised that it was time I wise up and find out all about the minefield that is KC treatment – since it seems that I am the best one to take future decisions about my treatment. I have learnt so much from the Support Network, especially the Facebook Group, that provides great advice and support. I now want to support KCSN in any way I can . Unfortunately the elephant will always be in the room, but I feel better equipped to deal with it, and I’m making some new friends.