My lessons in kidney cancer

A  special blog for Kidney Cancer Awareness Week 2023 by Alistair McKay

I’m 58 and I’m originally from Belfast, now living in Lisburn, County Antrim. Up until February of 2022 I was Principal of Finaghy Primary School where I had been in post for an incredibly happy and fulfilling 23 years. I recently made the difficult decision to retire some years earlier than I had planned to, in order to focus fully on my health.

I was first diagnosed with kidney cancer over 5 years ago during an ultrasound scan for a gallstone investigation. I had no symptoms at that time and no clue that I had a large tumour growing on my left kidney. Within a matter of weeks, I had the kidney removed and was back at work the following month. I remained in good health for three years and my quarterly CT scans were all coming back clear. But just as I was beginning to hope I might remain long-term cancer-free, I developed an annoying dull ache between my shoulder blades. In short order I was called for a bone scan. This aroused suspicion of a mass, and a subsequent full body MRI revealed a significant metastasised tumour on my upper spine and a smaller one on my neck. I knew then that the cancer cells had escaped my kidney and been silently roaming around in my system all that time and eventually decided to take up residence on my spine. My consultant renal surgeon, whose care and attention had been superb, referred me immediately to the team at Belfast City Hospital’s cancer centre. I rapidly received an intense course of radiotherapy and was put on an oral chemotherapy-related drug called Sutent . My tumours responded well to the radiotherapy and reduced significantly. This six-weekly cycle of treatment, alongside quite a large collection of meds to control the side effects, have kept me stable ever since. The side effects are tough at times, especially during the first year of treatment, but I’ve kept going, aided, and abetted by the care, love and compassion of doctors and nurses, family, friends, and colleagues. I remain hopeful, active, and positive and I’m enjoying life as fully as I can.

My initial diagnosis was obviously a shock to me, to my partner Jill who is now my wife (we married in-between lockdowns two years ago), and a source of distress to my three grown-up daughters (Caitlin, Megan, and Erin),  my sister, my in-laws, my friends, and my work colleagues. It became this huge new unexpected, uninvited challenge in my life, and in the lives of those close to me. Having said that, the upset was perhaps even greater when, three-years later, having started to think I’d beaten it, the secondary tumours appeared.

But then, for the second time, nurses, doctors, consultants, and radiologists at City Hospital swarmed into action. Whilst they were honest with me about the gravity of my situation, at no time did they ever give me cause to give up hope. Quite the opposite in fact. The complex system of care and treatment they built around me was expertly designed to give me every chance of longer survival and a good quality of life. Today I still marvel at their skill, their compassion, and their commitment.

Now that I’m retired, I’ve set up a woodworking shed at home which I love and intend to sell up-cycled furniture to raise money for charity. But in my journey there’s a long list of people working at Belfast City Hospital whom I need to thank, but outstanding amongst them is Mel McNally, senior clinical nurse specialist. Mel has been my allocated link nurse since 2019. I communicate with her face-to-face, by email, by phone and by text all the time. She is always available; no request is too small, and no question is too stupid. She has encouraged me through darker days, laughed with me through brighter ones and she coordinates all my care. Mel once said to me  ‘always strive not to let cancer define you,’ and I took those words to heart. She also once called me ‘an inspiration.’ I was rather embarrassed and very humbled, but also hugely gratified if there’s a chance that my story can provide some hope for others.

Some years ago, I told Dr Herwitz, my most excellent assigned specialist at the Bridgewater clinic, that a big part of my motivation was to keep battling until the researchers came up with even better treatments. The best news of all is that a few weeks ago I was told that there are new combination drug treatments being licensed in Northern Ireland for kidney cancer which were not available when I started this journey. When the Sutent  therapy stops working, I could well be a good candidate for the new treatment. I now say I’m ‘living with kidney cancer’ as opposed to dying from it. There are huge leaps forward taking place in treatment for all types of the disease, bringing renewed hope to so many patients, and the services provided by the team at Belfast City Hospital are world class.

I’ve always been open about my condition and this has proven to be a good strategy. Not only does it give others the freedom to talk to me about their own, or their family’s  journey with cancer, it enables me to share, to avoid bottling up, and to express my own emotions. This can be a great release.  I have also had the privilege of speaking at fund raising events, participating in charity challenges, and forging new friendships. Someone once said there are only three things required for happiness: something to do, someone to love and something to hope for. I would offer that as a great mantra for others in similar situations to mine. Stay busy, accept the love and care of your family and friends and make plans, big or small, as they will give you something to strive for the next day, week, month, or year.

Good health,

Alistair.

#kcaw2023