Ask the Advocate: Black, Bald, and Battling Bladder Cancer
The Editorial Team interviewed our own community advocate Noel Forrest, known on Instagram as ‘Black, Bald, & Bladder Cancer,’ to get his personal advice and insights about what he’s learned since his bladder cancer diagnosis. His experiences living with cancer and supporting others in the community have given him a unique perspective to share that we wanted to highlight in honor of Bladder Cancer Awareness Month.
What is one piece of advice you would give to someone who is newly diagnosed with bladder cancer?
The one piece of advice I would give to someone newly diagnosed with bladder cancer would be to make sure you understand what your medical team is offering in regards to your treatment. Do as much research as possible on the treatment available for your diagnosis, and don’t be afraid to challenge your medical team if you are not convinced with their treatment plan. One of the best ways to get a great understanding of your condition is to speak with other bladder cancer patients who have been through what you are about to experience. Joining a bladder cancer group is so important. The depth of knowledge you get from other bladder cancer sufferers can completely outweigh the information you receive from the specialist within the field, in my experience. I received plenty of leaflets and went onto the internet after being diagnosed, but none of this compared to when I actually spoke with other bladder cancer patients/sufferers.
What do you wish people outside of the cancer community knew about bladder cancer?
I wish people outside of the cancer community knew more about bladder cancer. Bladder cancer lives in the shadow of some of the more well known cancers, and many people have never heard of bladder cancer. I wish those in positions of authority understood more about what it’s like to live with bladder cancer and were more educated on how to deal with sufferers, particularly those that have had a radical cystectomy. Another area that is totally underestimated is that bladder cancer sufferers become engulfed in the passing of urine, and every day you have to keep on top of when to go and where to go. This pressure will never be fully understood by those outside of the bladder cancer community.
Why is bladder cancer awareness important to you?
Bladder cancer awareness is important to me because we don’t fully understand how or why you end up with this disease. There are a number of lifestyle issues that I’ve implemented since being diagnosed, which is something I wish I could have done beforehand. Hindsight, of course, is wonderful thing, but the abuse we can give to our bladders without realizing the damage we are causing should be known by others. I also from a personal perspective believe men should be made more aware of the symptoms. Many men tend not to seek medical advice unless they are in real pain and bladder cancer does not always show itself with painful symptoms. It does, however, have symptoms that are recognizable, and awareness of this will help men like me who ignored the obvious signs, because I was in no pain.
Do you have any ideas or creative ways to celebrate bladder cancer awareness month?
I’m a qualified mountain leader and have climbed many big mountains over the years on a personal front and introduced many groups to the beauty of the outdoors. Now that I have been living with bladder cancer, I would love during the cancer awareness month to help anyone living with this condition to climb anyone of the three biggest in the United Kingdom to raise awareness and to celebrate either their own or another’s fight with this disease.