My name is Steve and I am currently 40 years old. I have an amazing wife, Clare, and two wonderful sons, Ernie 6 and Stanley 3.
In August 2016, with Clare 14 weeks pregnant with Stanley, I was admitted to hospital with severe stomach pains. I had been back and forth to the doctors and hospital for various tests since June.
I was admitted by a fantastic doctor who said I had been through enough tests, so it was time to admit me and get to the bottom of the situation.
I had a CT scan, and the following morning a consultant and a number of others entered my hospital room. I was told I had an 8.5 cm tumour in my right kidney. I was told it had probably been there for about 10 years. I was also told that they would do another all over body scan later that day to make sure the cancer hadn’t spread anywhere else.
The following day, I had the results of my second scan and was told by a different consultant that there were two very small nodules on my lungs. They could not say whether these nodules were spread of the kidney cancer or whether they were incidental. They also told me they were almost certain the cancer was renal cell carcinoma. I was advised that what they had found was not connected to the symptoms I was admitted with.
I was booked in for a nephrectomy at my local hospital, after which I would be scanned again and if the lung nodules had changed size I would be referred to The Christie Hospital in Manchester to see Professor Hawkins.
I had my nephrectomy on Saturday 17th September 2016, 3 weeks after diagnosis. Mr Bromage, my surgeon, was fantastic and despite a very small issue of my kidney being stuck to my bowel, the operation was a success. I was in hospital for two nights and was sent home at lunch time on Monday, which happened to my 37th birthday.
The first few days were tough but as time went on, I grew stronger and listened to my body and only did things as I felt comfortable to do so. Unfortunately, after two weeks a district nurse came to take out my staples and she couldn’t take them all out as she felt there was an infection. I had felt a little unwell a few days before and a doctor told me I had gastroenteritis. What the district nurse had suggested was correct and I was admitted to my local hospital for antibiotics administered via a drip. I was in hospital for a couple of days.
After returning home a district nurse came to take out the remaining staples and I slowly started to re-build my strength. I was back driving 4 weeks after the operation and back at work after 6, albeit on a fazed return for a week.
Through all of this I received fantastic support from my family and friends and a Macmillan counsellor. I did not know anybody else who had kidney cancer.
I was scanned every 6 months following this and was told on each occasion that there was no sign of spread and the lung nodules were stable and likely benign.
I was due an appointment in December 2017 for my scan results but received a letter the week before cancelling due to staff shortages. I chased the urology department and was given an appointment for the end of January 2018.
On Monday 15th January I was driving past my local hospital and I received a call from them at 13:00. I was told I needed to come in at 16:00 that day. There was no more information to give me at that time.
I attended the appointment with Clare, my wife, and Mr Bromage. He informed me that the cancer had spread to the lymph nodes in my stomach. I was told it was incurable and I was being referred to Prof Hawkins at The Christie Hospital in Manchester. I was told I was likely to be put on TKIs but Prof is trialling immunotherapy treatments. I was told I could have around 4 years to live.
We were absolutely devastated and left and told our family. There was no operation this time and no visible way out.
I then found Kidney Cancer Support Network on a Google search and set up a call with Rose. She told me about Prof’s immunotherapy treatment called high-dose (HD) interleukin-2 (IL-2). It was the only possible treatment that could lead to remission. She did advise it was an extremely tough treatment and you had to meet certain criteria to be considered for it.
When I met Prof and his team I was told I was eligible for treatment, subject to a heart stress test which I had at Wythenshaw Hospital.
Interleukin-2 is only available at The Christie and is funded by the Christie Charity. It is a hospital inpatient treatment and is certainly not for the faint hearted. One of Prof’s team even told me that I didn’t have to go through with the treatment, and that other patients had opted for life-lengthening drugs rather than IL-2.
That was never an option for me as I had two children to be there for. The doctors gave me all the medical information but just as valuable, if not more so, was the information I got from KCSN members, especially those who had already gone through IL-2 with different outcomes.
I had 33 doses of IL-2 over 4 hospital admissions, and to say I hit the bottom at times was an understatement, but you do recover from the extreme symptoms pretty quickly and I am certainly glad I took it on.
The treatment was successful for me and I will be forever grateful to both The Christie Hospital and KCSN. Both were invaluable to me and KCSN has continued to play an important part in my recovery and life going forward. I have been in remission since September 2018 and am scanned every 3 months.
I became an administrator for KCSN’s Facebook page in January 2019 and have more recently joined the charity on a more formal basis. I have carried out fundraising events and I plan to continue to be involved with KCSN for the foreseeable future, alongside the new career I am training for in person centred counselling.