My kidney cancer journey

Hi there, my name is Ali Gorman and I have been asked by Kidney Cancer UK to share my own personal kidney cancer journey, and I am more than happy to in the hope it can help anyone in a similar position to me. 

My kidney cancer story began around 6 years ago in 2018. One day, I had been feeling very stressed which resulted in my blood pressure increasing. I remember my wife saying to me that it was like “living with a time bomb” as I was always on edge and snappy.

Like anyone, I thought my stress was work related and thought nothing of it. Then, one day I started to get numbness in my hand and pain in my arm, again, my wife took my blood pressure which was dangerously high. Calling 111 for advice, I was scheduled an emergency appointment with my doctor who sent me straight to the cardiac department for assessment.
I was sent for tests, which all came back that the issue was not related to my heart. Luckily for me, there was a consultant on duty that day that insisted for me to have a full body scan because they were still concerned about my high blood pressure. After having the full body scan, I was then sent home.

The next evening I had a call from the hospital asking me that they had the results from my scan and I needed to come back in and bring my wife with me. Obviously incredibly concerned by the phone call, my wife and I went straight into hospital, it was then I received the news that I had a ‘growth’ in my kidney. Shocked, I still didn’t fully understand what a ‘growth’ meant and frustratingly, our doctor didn’t explain the severity of the growth to us either. It wasn’t until my wife and I read the results letter that I realised the growth was suspected renal cancer. I am 56 and was diagnosed just before my 50th birthday. I was classed as ‘young’ for this type of cancer.

The next few weeks were a bit of a blur of emotions and anxiety while waiting to see the renal cancer consultant to get a plan in place for what could be done for me, and what I was dealing with. At my appointment, the consultant informed me that the growth on my kidney was, in fact, a large cancerous tumour. He showed me the x-rays of my tumour, and I asked to take a photo so I could show my wife. The consultant told me that, luckily, the tumour looked like it had been contained to my kidney which meant I could have surgery to hopefully remove the whole of the cancer, including my kidney. I reacted with ‘thank you’, and left to go back to work. To be honest, part of me was still in shock and the other was pleased that it sounded like the cancer would be removed and I could continue to live my life.

I found out that chemo and radiotherapy do not work with renal cancer, but if needed to explore the chemo route, there is a tablet that can be used. Knowing about the side effects of chemo, this was something that worried me. I was allocated a cancer nurse who helped me in my journey to navigate kidney cancer. Unknowingly to me at the time, my wife and consultant had thought I hadn’t taken the news in after I left the first consultant appointment. The truth is, I had taken it in but I felt like I could manage it because I had a better understanding of what I was dealing with. 

Scheduled for surgery, I kept busy by working straight up to the day I went in. Although I did get extremely weak and tired, I felt it was the only way I could deal with everything that was going on.  My wife said I was very difficult to live with, she told me that I was acting like it wasn’t happening and being quite cold and angry with all those closest to me. Being a man who struggles with empathy and to show emotion, I could not understand why she was getting upset when I was the one with the diagnosis. Looking for support, my wife was advised by my cancer nurse to go to a ‘Maggie’s’ centre. The support class at Maggie’s was highly beneficial, they gave my wife the tools she needed to navergate my diagnosis herself and reassured her that places like Maggie’s, and charities like Kidney Cancer UK are there for the families, as well as the patients. So please, if you’re or your family are in the same boat as my family was, please use these resources, they’re there for us.
Looking back, I do feel guilty that I didn’t quite understand how my kidney cancer diagnosis would affect my wife and also my children. My youngest teenage daughter really struggled with coming to terms with everything. She kept her concerns to herself and didn’t want to worry me. The first time I found out she was struggling was when she wrote an essay at school stating her worries. It actually took a support worker to speak to me to make me realise how it was affecting my entire family, and that we needed to navigate this journey together. If I could go back, I would hopefully deal with it differently and I would advise anyone to be aware that a cancer diagnosis can affect the whole family, and it is a time to stick together and all get the support you need.   

Surgery day was here, I had my surgery to remove my kidney and woke up to the consultant at the end of my bed. He told me they had managed to remove the whole tumour and there were no signs of it having spread. I was elated that no further treatment was required! I was tired and slightly sore but felt so lucky that the surgeon was able to remove it with keyhole surgery, and the recovery itself was without any problems. 

I felt so lucky the way everything happened, but I couldn’t shift this feeling of ‘survivors’ guilt’. My wife and other friends and family finds this difficult to understand, which I get as they haven’t gone through what I have. My wife and others have the opinion that I should be so happy that I am still here, appreciate every single day of my life and be grateful that the cancer hadn’t spread. And believe me, I am grateful, but at the same time I think, why me? Why was I a lucky one?

After speaking to other kidney cancer patients/ survivors, I learnt that I wasn’t the only person to feel like this. I also realised that others share the same fear I have, the constant fear that it will return one day. Every time I have my 6 monthly check-up scan and chest x-ray, I become incredibly anxious. Thankfully,I have been clear and they are now down to yearly check-ups. I thought the checkups would end in year five, but I was so grateful I had another this year. It really puts my mind at ease knowing that the cancer hasn’t returned. Although please remember, everyone’s experience is different. 

I had many questions about having one of my kidneys removed and wasn’t sure how much it would affect my life. But, I have not had any health problems or feel significantly different with only having one kidney. I pee more (this may be an age thing!) and I am aware that I should drink a lot more water which is something I have struggled with, but with some nagging I am trying my best! I try my hardest to keep fit and eat healthy but don’t do without my treats – because, why not! 

My overall experience of having kidney cancer and learning to navigate my life has been positive and given me a lot of things to reflect on. The NHS staff have been amazing and I feel so fortunate that everything has gone in my favour. I have completed a couple of kilt walks now to help raise funds Kidney Cancer UK, a little thank you from me for the support and a way to give something back.

Signing off now with my final words; stay positive and don’t forget this also affects the people who love you, so stick together as a team. Good Luck with your journey. I hope this gives you a bit of insight into one person’s kidney cancer journey. 

All the best, Ali Gorman