Ed - From Diagnosis to Determination
With Florence Maponga
I want to share Ed's story with you in this blog post—his journey from an unexpected diagnosis in his early twenties to the wisdom he carries today.
Introducing Ed
My name is Ed. I am 50 years old, and I live in Stamford, Lincolnshire. I work in Human Resources. I love spending time with my family at home with my partner, Steve, and our Welsh Springer Spaniel, Arthur.
THE DIAGNOSIS
In 1993, I was on a university trip in the Netherlands. I noticed bleeding in my wee. I never thought that it could be a sign of cancer. I was diagnosed with bladder cancer after passing debris - that was when I was 21 in 1994. I popped a wee sample through the doctor’s surgery letter box after being worried. After sending the sample, I got a call to say I should go to the hospital immediately, and I was admitted straight away. I woke up with a catheter and was scared that I had gone through that on my own. I was lucky my cancer was low Grade 1 superficial and did not have to go through chemotherapy. I went through regular checks until I reached the age of 39 and was given the all-clear.
TREATMENT
During my treatment, it was a slight inconvenience going for check-ups initially 3 months, 6 months and yearly back and forth. That did not stop me from doing anything. I have lost count of how many flexible cystoscopies I have had over the years. I then passed some more blood in April 2023 and had a flexible cystoscopy, which I identified a new growth. It was removed in June. My biopsy results said it was a superficial growth, though it was Grade 2.
Note from Florence: Tumour grades are expressed as a number; the higher the number, the less the tumour resembles a normal cell and, therefore, the more aggressive it is. One way of classifying bladder cancer tumours is Grade 1 (low grade), Grade 2 (intermediate grade), or Grade 3 (high grade). Learn more at Fight Bladder Cancer’s page on Types and Stages of Bladder Cancer.
I have recently finished my 6 treatments of intravesical chemotherapy. This was a new experience as I hadn’t had it before. I think I am lucky as the bladder is contained so that the chemo will be contained and not passed around my body, so there were minimal side effects, just a little bit of fatigue on the day. It has given me a boost to think about making some lifestyle changes in my fitness, so I hope I have joined the gym again to make 2024 the year of the body. I have also just been for another flexible cystoscopy, and the good news is that the chemotherapy has worked, there are no signs of reoccurrence, and my next check-up will be in 3 months.
Note from Florence: Intravesical therapy refers to a procedure in which physicians place liquid anti-cancer medication directly into your bladder through a catheter rather than giving it by mouth or injecting it into your bloodstream. Learn more at Fight Bladder Cancer's page on In-Bladder Treatments.
MY ADVICE
If you have been diagnosed like me, don’t beat yourself up if you have waves of good days or off days. I always tell myself I am in the medical system now, I am being checked, and my treatment is about prevention and stopping reoccurrence, so that’s a good thing. If this new diagnosis motivates me to return to the gym, I will probably find that my overall health will improve.
My advice to someone just diagnosed is this: family support is so important. If you have family around, go out for a lovely meal with lashings of love. Don’t stop doing anything; live your life fully, but still get all your check-ups. Avoid smoking and try to think about overall health again. Avoid alcohol over treatment and drink a lot of water.
Try to find helpful groups on social media. Fight Bladder Cancer and its social media are valuable places to read other people's testimonies and how they managed their journeys.
Note from Florence: Read more patient stories on Fight Bladder Cancer's Real Stories webpage
Share Your Story
We urge you, our readers, to share your own stories, seek family support or consult our resources. If Ed's story resonates with you, we invite you to share your experiences on our platform. Together, we can fight bladder cancer.
