In our thoughts
I found out I had kidney cancer after having an accident on my then trout fishery. We were working on the lake and the boat we were using crashed into my ribs. After a couple of days I went to the hospital as I knew that I had at least a couple of cracked ribs, and wanted to have an X-ray to make sure there was no real damaged. X-ray results showed that I had cracked four ribs and in time they would heal.
About 10 days after having the X-ray, my wife got a call from the hospital asking for me to go back and have another X-ray as they had spotted something they wanted to re-check: I knew that something was not right and was very concerned what it could be.
Before I go on a little bit about myself
For more years than I want to remember, ever since I left school I have always worked very hard: 16 years in the Army, worked as a driller for many years in appalling weather conditions and always worked in most cases 7 days a week, smoked like a trooper and drank like a fish. My diet was crap and I weighed 15 stone 4lb, but was very active.
My passion was fishing, from a small boy and still today. My hobby became my living and some 20 years ago I opened a trout fishery with the help of my wife, Claire, and a service centre for repairing fishing reels. We had 7 staff and we all worked very hard.
Back to the X-ray; I had the X-ray done and was told to wait in the room, 20 mins later a consultant came in to see me and give me the results. You could hear a pin fall as he told me I had cancer. I would have to go for a scan. I went home and told Claire, my wife, what I had been told and I can admit I cried my eyes out as I said why me! Is my life over, how long will I live, what the hell am I going to do? From the outset of this journey, my wife, Claire, has been my rock, and at times had to push me that you just cannot give up.
On the 3rd of April 2013 I was diagnosed with kidney cancer and was told that it was not all bad news. This baffled me a little as I said, what is the good news then? The kidney was the primary sauce of the cancer so we take out the kidney and with treatment we can sort out the metastases on the lung.
So on the 21st of May 2013 the kidney was removed, 10 days in hospital and the day I came out of hospital I went back to work. But I could not do any physical work, but I knew if I was back at work I would get better quicker as I felt more comfortable being able to help in some way. So working on my computer, I was able to be useful. My staff and Claire were great and kept everything running smoothly, and without them I am not sure what I would have done.
I was told that I would be under Professor Wagstaff at Singleton Hospital. At the time this name did not mean anything to me. But as I started my first lot of treatment his name will stop with me for evermore for his dedication to all his patients. All Professor Wagstaff’s oncologists and registrars are the best in the NHS.
The first treatment I was given was pazopanib (short name paz) in September 2013, and for a while showed good results, but by mid-2015 paz stopped working and I would have to come off it. I had a lot of bad side effects and all food tasted like metal. I lost count how much Claire spent on food to try and get me to eat and Claire would go mad at me if I would not eat. Although Claire was right, what do you do when you cannot face food? And I did try many things, but with perseverance Claire found a way round for me to eat some types of food, but I now had to come off the paz.
After a few weeks off paz, I went on to a drug called axitinib, in September 2015. This one was the worst one for me, the side effects were awful for me. Now on axitinib I wanted to eat, but one of the side effects was a very sore mouth and I found it very difficult to eat and must admit I did not eat a lot, but it was a little better than paz. The other problem I had was the axitinib caused very sore feet and also created big blisters on my feet so I could hardly walk. Even a chiropodist could not do a lot for me, but by padding the blisters I was able to walk a little better. The scans were showing reasonable results and my oncologist was happy with the ways things were going.
But sadly this was not to be, as for some reason I caught some sort of infection. I felt very ill, did not want to do anything, felt very weak. Christmas was a wash-out, not just for me but also the family. I could not eat and did not want to eat. All I wanted to do was sleep, and felt very sorry for myself. Once again this is where the strength of my wife, Claire, came in, doing what she knows best was to keep nagging me to eat. Claire said I do not want to see you die and I will not let it happen. This hit me more than anything. Claire has never been so upset and I knew I had to buck up. I did buck up a little bit but did not feel right. My daughter Louise, who is a Doctor, took me to see my GP and gave me some tablets to take, but by end of January I was still not right. Then on the morning of the 3rd of February I had got up as normal and that’s the last thing I remember.
My wife had our daughter to call up to our house and straight away Louise called for an ambulance. Once in hospital they took me in to ICU. After a while, doctors told Claire that I was very poorly and advised her that I was so bad that I may not make it through the night. With strong antibiotics being pumped into me there was some light at the end of the tunnel. 5 days later they moved me out of ICU to the cancer ward as I slowly recovered from severe sepsis. The doctors and the ICU nurses were incredible; they got me through this and all I had to do was get well. My weight had dropped to below 10 stone, so there was a lot to do.
While recovering, Professor Wagstaff told me that I would not be going back on axitinib but a new drug. The name of the drug is nivolumab, which I started early April under the Early Access to Medicines (EAMS) programme. I have had 28 infusions to date. I have had 4 scans with good results. The side effects are very little and certainly not worth complaining about at this stage. Nivolumab has given me my life back and also to my family; what more could anyone ask for.
The one thing I have learnt is once you have been told that you have cancer you are not the only one affected. The whole family has to live with this as well. Wife/husband can go through hell, but love and being positive can get you through any obstacle that is put in your way.
My wife, Claire, gave me the strength to get through this and, yes, there still a long way to go. I do now have a life.
I would like to sincerely thank Rose and the KCSN who helped Claire through the very dark day of the 3rd of February 2016, and showed her that a promising new treatment would help me.
Today, a year later at the age of 67, I weigh 13 stone and I am back at work full time. I go fishing every Saturday and Sunday and I am loving life. I know there is still a long way to go, but I also know that with love and good people around you, you can do anything you put your mind to.