Darron, radical cystectomy, and choosing life over fear

Published on 28 February 2024

With Florence Maponga

Meet Darron, who narrates his story from diagnosis to treatment and his advice to other bladder cancer patients.

My name is Darron; I am 53 years old and have been a chef all my life. I have always enjoyed country pursuits – fishing, dog training and general outdoor life- a relief from the pressures of a commercial kitchen. Back in 2015, I noticed some blood in my urine but put it down to kidney stones as I passed what I thought was a stone about a week later. I thought nothing more of it until I again saw blood in November 2021, at which point I went to my GP, and there, my journey started.

THE DIAGNOSIS

I was diagnosed with grade 3 agressive bladder cancer (that word aggressive sounds like the bully in the playground). You seem to forget the number. It’s just the word “aggressive”.

While sitting in front of the surgeon, he told me that my chances were 65% to 70%, and there was a chance that I could make it through. The fog descends, and my wife is crying. Then the nurse approached me, and I said I did not know if this was going to be an easy road for me, a bit like the losing side on The Apprentice, who should be thrown under the bus (was it smoking, was it the drinking, was it my lifestyle or just simply bad luck?) I remembered that as we walked down the long corridor, the nurse turned and said it was a champagne moment because we knew what to do and how to treat it.

TREATMENT

I had chemo for three months. That was tough.

Eating habits changed, and I reverted to childhood, Coco pops, sweets, hot chocolate, even cold rice pudding, and still having to take laxatives for the ruddy constipation. I still had to make up my mind about which path I should take. After a long talk with my wife and family, I decided on a radical cystectomy.

Note from Florence: Radical cystectomy is surgery to remove your bladder as a treatment for muscle-invasive bladder cancer. It also involves removing the nearby lymph nodes part of the urethra ( the prostate in men). It is a major operation lasting for at least six hours. Read more…. 

At a meeting with doctors and nurses at Addenbrooke’s, there seemed to be a sigh of relief from all in the room. I am thinking of the right choice out of the three that I had. Now came the change of mindset. This was to be thought of as an all-inclusive holiday. On arrival at the reception at Addenbrookes Hospital, I was signing in not as a patient but as a guest. I dropped my bag off as I was called in, went into my cubicle, and got dressed into my holiday gown and flight socks. Sam was my wonderful stewardess.

They gave me my holiday injection (epidural) as I was lying on the bed; I said “I have done all I can do to prep, and now this bit is yours”. They all smiled and said I was in great hands. They asked which was my favourite wine I enjoyed the most; I then drifted into my holiday flight. I awoke some 11 hours later, minus a few body parts in the ICU ward, but my mind was at the hotel spar, full pampering by two wonderful male nurses; they took care of everything. As I was in the ICU ward, I was receiving texts from the NHS, could I give them ratings on staff and service? I think this is Trip Advisor NHS style. I thought I would wait until I leave here before the rating starts. I was ushered to the upper decks of the Addenbrooke’s hotel, overlooking the plains of Cambridgeshire as I lay on my sun lounger attached to all my new bits and pieces, thinking, “What a holiday (legal drugs all you can eat and drink, full service 24/7)!” I placed my food order with the waitress /nurse. It arrived sometime later. They lifted the cloche, and it looked just like the picture, and unfortunately, it tasted like the picture, not the chef’s fault. I blamed it on the chemo. I was getting myself out and about as soon as possible as I had heard about the physiotherapist from the other guest in our room. It was on the 5th day that the surgeons or hotel management came around and said if I had had a poo, I could then be on my way. I had something that I had only seen in movies; it looked funny on TV, and when I texted my wife and said I would be home soon as I was having an enema, she replied, “Best of luck with that”. Never again, but I will say I was home that day.

On leaving the Addenbrookes Hotel, I left with an attached stoma. We had a few mishaps, but I have an understanding, I promise not to change the bag when having drunk two pints, and it will not piss on my toes. People ask me how I got through that. The answer is that I had no choice; it is life-changing, not life-ending. There have been a few changes in my life since then. I have given up being a chef on a day-to-day basis, although I still enjoy cooking for friends and family and the odd private dinner. My sleeping habits have changed as I now cannot turn in bed with the night bag attached. I now flip over and top to toe with my wife; she must put up with my feet for some of the night. Luckily, we have a very large bed! Other than that, everything in life is the same, if not slightly better, as I appreciate every day.

Note from Florence: Read more patient stories.

ADVICE

Fight Bladder Cancer has helped, and also the private Facebook forum, as it is always good to hear that other people are going through the same thing and that you are not on your own.  There is always someone there to offer help and useful tips.

My advice to anyone starting on this journey is to let the fog settle first, as you cannot think straight after the diagnosis. Please put your trust in the professionals and follow their advice as you are now on the NHS conveyor belt. Always focus on the end of treatment and award yourself when you get there.

SHARE YOUR STORY

Note from Florence: We urge you, our readers, to share your own stories, seek family support or consult our resources. If Darron’s story resonates with you, we invite you to share your experiences on our platform. Together, we can fight bladder cancer.

Muscle invasive bladder cancer

Living with a stoma

Living with a neobladder