“it’s cancer” said the Urology Consultant, and in that instant, my life changed.

Stephen Elliott my kidney cancer journey

Steve and wife Jan

It was August 2020 and I’m otherwise reasonably fit and healthy, I’d been feeling a bit under the weather then one Saturday evening there, in my urine, I saw blood.

I called my GP Monday who phoned back very quickly asking me to provide a urine sample and the following Friday I had a scan at the Lister Hospital. One week later the consultant showed me the scan of my kidney with the 10cm tumour pushing against the vena cava. He explained in a couple of sentences that it was cancer and there was no other option than to remove the entire kidney along with the adrenal gland and surrounding tissue, and repair the vein, if the cancer hadn’t impacted too much.

No thanks to the Covid-19 rules, my wife had been waiting in the car park while I was being told this life changing news. Breaking the news to her was a deeply emotional event, albeit with the support of my newly appointed clinical nurse specialist (CNS) alongside.

That night, I was very poorly with a lot of blood and great deal of pain. The side-effects of the strong painkillers diagnosed by the GP left me completely out of sorts for 3 days: an indicator of troubles ahead.

How does anyone live with just one kidney? I’d never even heard of kidney cancer, so as far as I was concerned it was game over. But, once the mist cleared, I knew that all life is precious, and I had to force myself be positive; so I made a plan of action.

I asked myself – ‘what did I already know and what did I need to find out?’

Firstly, I knew the surgeon’s names and their plan. This was enormously helpful as I looked them up online and was comforted by reading about their great skills and experience. Meeting them a few days before the operation only increased my confidence. Good news, as they  were about to save my life.

I discovered that the NHS has a cancer operating target of 62 days from GP referral, so I regularly contacted the CNS for updates, and she was wonderfully helpful throughout.

I needed an independent source of specialist knowledge, so again through searching online I found Kidney Cancer UK. I read their booklets, watched their fitness videos, and joined their regular Zoom ‘Coffee, Cake & Chat’ meetings which were, and still are, enormously reassuring, supportive and informative.

I knew my hospital stay would be a week or more, so I needed comfy pyjamas, a 2-metre phone charger, fruit puree sachets, wash wipes, a flannel – in fact, everything I might need as I’d have no visitors to top up my supplies. I knew I needed to be open with friends and family and learned that WhatsApp was the best way to communicate and keep in touch.

I was so grateful to my wife Jan for her wholehearted commitment, she helped me every step of the way and has been amazing.

My objective was to stay physically fit despite frequent blood clots in my urine; to shield to avoid Covid-19, and to get equipped for a week in hospital.

Admission day arrived, 59 days from referral, and I was immediately struck by the professionalism of all those who prepared me for the operation, which really helped calm my nerves. You simply can’t ignore or underestimate the human emotion that goes with such a major event no matter how confident I may have seemed outwardly.

The next I knew was waking up in intensive care to lights, noise, interrupted sleep, a woozy head and lying still. Then 24-hours later I’m being wheeled into the main ward with all its lights, alarms, interrupted sleep but this time trying to move a bit. The effects of the opioid pain management made me dizzy every time I tried to get out of bed or sit in the chair. It would be a week before I could walk a few steps and they’d let me go home.

In this week, I was able to WhatsApp call my wife and send video messages to family and friends so they could see me as there was, of course, no visiting. I got so many messages as well as videos of my grandchildren; that’s what truly gave me the drive to get going again.

I had lost a stone since the diagnosis and simply didn’t fancy eating much. But gradually, and much slower than I imagined, I began to get back to some sort of new normal. Some things were better – my blood pressure came down, sleeping at night became regular (with a mandatory afternoon nap) and my bladder less urgent. I still had constant back ache, dull and occasional sharp pain, and troublesome bowels which made some day-to-day things more difficult. I was determined to cut down on pain killers, so stuck to paracetamol, not co-codamol, to reduce side-effects and let me feel how my body was coping, even if it did mean having some pain.

My oncology consultant invited me to join the ‘Rampart’ clinical study which researches into returning cancer.  I had no hesitation joining, even if it meant having drugs that might have unwelcome side-effects.  I had my first post-op scan 3 days before Christmas at Mount Vernon and… it was all clear. Phew!

My new post-op hobby

It’s now 5 months since the operation and although I had a recent bladder infection, which was rather worrying, and had a horrible experience of vertigo one night, much of my life is returning to normal. My weight is up, I’m trying to avoid causing a hernia – *Lesson in how to avoid a hernia – “Don’t lift anything for 6 months”, said the Urology Consultant – so, I restrict myself only to very lightweight items where stomach muscles are not involved, and I’m beginning to plan for life after lockdown. My scans are every 4 months on Rampart, so I’ll be getting regular updates on whether this cancer has given up.

I now know that I can live with just one kidney; I definitely feel better since removing my very unwelcome guest and I’m so grateful to everyone who has seen me through this.

All the best of health to you all

Steve Elliott