I was born in mining village in South Yorkshire early in the 1960s. I moved to Sheffield in the 1980s, got married, had kids, had a good job at British Steel.
Eventually, I got divorced and met Marie, and we were just starting to enjoy life. No children at home, no mortgage, lots of holidays, and we both had quite good jobs.
Bringing forward the story to the end of 2013. I was now 52. I banged my knee on the corner of the coffee table and fell to the floor in agony. Marie, sympathetic as ever; “Get up you drama queen, you hardly touched it.” “No honest babe it really hurts”. Over the next few weeks and months the knee got worse, but being a stubborn man I insisted I didn’t need the doctor, until it affected my walking.
I went to see my GP in June 2014 and he suspected cartilage issues, as I had played football for many years. I was given anti-inflammatories. After a few weeks there was no major improvement, so I went back to the GP and he referred me to Rotherham hospital. I was given an X-ray. In fact, I was given a quite few X-rays and I thought this was quite strange.
On getting home (same day) from the hospital, the phone rang – it was my GP; “Please can you attend the surgery now to discuss your results”. I though this was strange. Anyway, the GP informed us that it’s probably a giant cell tumour in the knee (a non-cancerous tumour that develops in bones). “A new knee joint will be fitted and you’ll be good to go. We’ll just send you to Birmingham for a biopsy to be sure.” On the 12th August 2014 I had my knee drilled for a biopsy. Two weeks later I got the results: renal cell carcinoma (RCC), stage 4. Further scans revealed my left kidney had a large tumour.
Now at this point I did not have clue what this meant, and bear in mind I had had no symptoms whatsoever other than my knee. Prior to this I have been healthy all my life. I suspected the doctors would fit a new knee joint, remove the bad kidney, and I could get back to work and carry on as normal…….NO.
I was transferred to the urology department in Rotherham hospital. The surgeon was very busy and couldn’t fit me in as he had a lot of other cancer cases, so he tried to get Birmingham to carry out the knee operation first. This went on and on for weeks, with the hospitals arguing about time of their surgeries. Eventually, I had a full nephrectomy of the left kidney in October 2014. Post op, while still on painkillers, I was introduced to Jayne, a palliative care nurse. This was a shock – am I dying? Why hadn’t I been told this? Anyway, I sobered up from the morphine quickly. We arranged a meeting for the following day with Marie and a doctor. They explained my 5-year survival rate was 8% – a shock like no other, I can tell you, plus I still had the more traumatic op to come.
The disease in my knee had now spread to my femur and shin bone. On 6th December the same year, I had a distal femoral replacement. This involved sawing my femur and shin bone, andinserting titanium rods and knee. These were drilled to my lower leg and hip (six million dollar man …… “we can rebuild him”).
Now, I can’t remember the kidney op being that painful, but boy, the leg op was. Especially as I had to learn how to walk, climb up and down stairs, get in and out of the bath etc.
Recovery was relatively quick – I heal well, apparently. Within three months I was back at work (office-based now) doing two and then three days a week. I was then transferred to an oncologist at Weston Park Cancer Hospital in Sheffield. I have CT scans every 12 weeks or so, and perhaps an annual or 18-month scan checking my bones.
Moving forward to November 2015. A CT scan showed metastases in my lungs and it was time to start targeted therapy with pazopanib (a tyrosine kinase inhibitor, TKI).
All was OK for a week. Then everything tasted like wood – food was horrible and I had to force myself to eat. I went for a haircut (now I have very short hair anyway) and I terrified the poor hairdresser – as she used the shears all my dark hair came off and left brilliant white roots – she was mortified! By week four, my skin was going yellow and I felt ill, really ill. Now again, me being me, I had expected to feel ill – its not good stuff! I didn’t know how ill you’re supposed to be before you say anything, so I carried on. Anyway, my district nurse called just to see how I was doing. She went mad! I explained I didn’t know any better, but she failed to see the funny side. So off to hospital overnight, tests for all sorts and I was put on a drip. No more pazopanib (Votrient).
So in January 2016 I started sunitinib (Sutent) – first 50mg, then 37.5mg, then 25mg. I coped quite well, to be honest. Results showed some shrinkage and I was stable for a year. Then in April 2017 my scan results were worse, so back up to 37.5mg then 50mg to try the maximum dose of first-line treatment prior to starting second-line treatment. My latest scan results were still not good, so I was supposed to start second-line treatment with axitinib (Inlyta); however, because of my low white blood count, I was given a month off treatment.
August 2017 and I’m feeling absolutely fantastic – no drugs for a month, the longest break since I started the treatment. I know, however, that I need to start treatment soon. Then out of the blue I had a phone call from my oncologist; “We re-checked your scan to get baseline measurements of your tumour sizes before starting second-line treatment”. It turns out the results were wrong. The increase in dose in sunitinib had shrunk the tumours a little, so I’m now carrying on at 37.5mg dosage until my next scan at least.
Overall its been a emotional journey, not just for me, but for Marie too. I couldn’t have got through it all without her constant encouragement and support. Thank you Marie.
So now I have a “new” life. Still similar to the old one, but not the same. I left the steel industry after many years and now work two days a week running a small warehouse.
I walk the dog, go fishing, ride and build motorbikes, and holiday as often as possible.
Its amazing how far you can come and what we can put up with.
Finally I would like to add a few words about the KCSN and the people who run it. Though only a “new boy” on here, I’ve been made welcome and the depth of knowledge and material I’ve found on here is greater than any other site I’ve come across, and it’s constantly being updated. The administrators are passionate about our fight with kidney cancer and very knowledgeable in their own right.
Plus it’s a great place for us all to talk about our problems and help each other, since we joined the elite club that is kidney cancer. Because if you (or a loved one) haven’t got it, you won’t understand.
Thank you for reading my story, good luck to you all. Stay strong.