Well, I’ve been on a ride, that’s for sure!
It all started for me at Christmas 2020, when as a man of a particular age, 53, who loves cycling, I developed what I thought was prostatitis. So, I stayed off the bike for a while and after six weeks the bike, it was not much better. So, following a GP consultation over the phone, antibiotics were started. Needless to say, it was not much better four-weeks later, and a follow-up call resulted in a longer dose of the same antibiotics. Well, at the end of all this and repeat calls to the GP, I was referred to a urologist at Lister Hospital who promptly said; “here are some more drugs”! By now I am well and truly dosed up!!
The urologist followed up my treatment with another phone call, and by now we are in June, and having recently handed in my notice at my job, I am mentally preparing myself to start with my new employer.
The phone call went almost as I expected, as the symptoms were finally going, and I was ‘thinking thank you big man upstairs. All the guys reading this will appreciate, problems with that small gland that moves around at will and controls oh so much of a man’s wellbeing is not a fun thing to contemplate!
Back to the journey: Towards the end of the call, my now best friend urologist says, “I think you should have some routine tests as part of the follow up, nothing serious.” I say, “What tests?,” he replies “ultrasound, and flexible cystoscopy (ouch!), are you up for these?” Well, who could turn down such a wonderful experience as cystoscopy, so I said ‘YES’”.
So off I went on a sunny Sunday morning in July to Lister Hospital to have my routine ultrasound. After what seemed like an ocean of cold wet gel running around my side, back and right up to my rib cage the radiographer says; “thanks, we will be in touch with the results” and I trot off home again. It did occur to me on the way home that she spent just two-minutes on my left side but 12 on my right, but why worry; right?
My journey at this point, accelerates, when 48-hours later I get a phone call from the radiographer asking if I can come in for a CT scan the following day; “Just routine nothing to worry about” she says. So, naturally I head for the hospital contemplating another astronomical parking fee and thinking ‘oh gosh’! (Well, I can’t post what I actually thought.) So, I have the injection to dye my blood and before I know it, I’m in the scanner. All goes well and 30-minutes later I am out, sprinting to avoid the parking charge. Although the next day the whole process is repeated with another phone call; “just routine, we should have done it the other day” says the receptionist most apologetically! This time I get to do the CT scanner without the colourful dye in my blood!
10-days pass and no news, although the respite was only temporary as a letter soon appeared on the doormat inviting me to meet a consultant to discuss the scans. Two and a half weeks later, at the allotted time, I rock up to the hospital again, and although I am a positive person, something in my bones told me this was going to be bad…….
And what a world changer it was! I had traded up from possible prostatitis to kidney cancer. The scan had discovered a 5cm tumour and that needed to be removed ASAP. Like everyone who has travelled this road, everything is suddenly thrown into turmoil. I have no idea how I drove home. I was offered time with a Macmillan nurse but remember politely declining it with the comment “No thanks, I will just go home and finish painting the ceiling.” What was I thinking! Once home I collapsed in tears with my wife, Jeanette, and my daughter. My wife and family have been incredibly supportive, including accommodating my change of diet, which although voluntary, has I believed contributed to very rapid recovery post operation. Macmillan were wonderful when I called later, and everyone, including my new employer, were great. The start date of my new job was delayed whilst I had surgery and recovered. Most people have a few days off or a holiday when starting a new job, me, I went for the ’major surgery’ option!
My surgery, a radical nephrectomy via Robot Assisted Surgery (RAS), followed in September and the team at the Lister were great. The day of the operation I felt like I was walking into an airport departure lounge, large chairs that recline while you wait and a really friendly team. I walked into theatre which was a first for me (I’m usually laying on a bed in absolute agony!). The anaesthetist was great talking about the wizardry of the robot, whilst the trainee went to town (all with my permission)! Five hours later I was back on the ward and recovery started the following day with me up and walking, although the usual three-mile stroll was not on the cards. My stay was short lived and six-weeks later I was back to work.
My journey continues on as I have been accepted onto the RAMPART global drug trial, which is administered at Mount Vernon Hospital. Although statistically I only had a small chance of getting adjuvant immunotherapy treatment, I have been lucky enough to be randomly selected into arm C, so I will receive treatment and be monitored further. The NHS surgeons, nurses, specialists support staff and secretaries have been amazing answering questions and fitting me in around very busy schedules.
Along the way I discovered via Facebook, Kidney Cancer UK. I have found their website and the closed Facebook group incredibly supportive. Once a month I try to attend their “Coffee, Cake & Chat” support group zoom meetings as it is good to talk with people who share the same experiences.
Being positive is sometimes hard but looking up is always more rewarding than looking down, so I will continue to read and save information relating to this completely under researched cancer. The latest news is positive as adjuvant immunotherapy with pembrolizumab is currently being assessed by the National Institute for Health and Care Excellence (NICE) for use within the NHS in England and Wales.
If you are male and reading this, please be open about all your medical conditions, as if I had not consulted my GP initially and not followed up with the tests, I would still be blissfully unaware of the unwanted, deadly visitor growing inside me. In kidney cancer cases, 40% of all discoveries are found by accident during routines tests for unrelated conditions, and 42% are diagnosed at late stages 3 or 4 which greatly reduces the chances of a positive outcome.
So, I feel amazingly blessed by the big man upstairs and although my journey through life has taken an unexpected turn, I am still breathing, treatments are improving and I have met through the network, some amazing individuals.