When you have cancer, you have to fight two battles. One is cancer itself, while the other is living in a world where only a few people understand what you are up against. I decided to adapt to my limitations. Prostate Cancer is a crisis in the black community right now. Every year almost thousands of our men die because of this cancer, and many more suffer harm to
their lifestyle due to prostate cancer treatments. I would say to you that I am the voice for the voiceless. I am a passionate patient and also a volunteer.
In 2012, I received an unexpected and untimely stage four diagnosis with a presenting PSA of 509. For someone my age at that time, which was 54, my PSA should have been two and four while my PSA was five hundred nine. I was told to shift my thinking to the short term from the long term, but despite this, as you can see, I am very much alive and kicking with my cancer now well managed.
Almost ten years later, but with a few side effects. Some of those side effects are the loss of muscle mass and the pains I still get in my lower back region. A medication that I am on has torn apart my whole testosterone in my body because I am on a testosterone reducing agent. These are just some of the side effects.
My personal experience has not been a smooth one. There have been times when I believe the care I received and the empathy towards myself and my wife regarding what we were facing were sometimes absent by some medical professionals. On a particular occasion, we had to raise an official complaint.
During my journey, I had a consultant that happened to look like me, a black male. We got on very well when I was first referred to my cancer treatment centers. He was part of the team, and we seemed to get on well. I felt he understood me from my culture to food, my lifestyle, and how I was. He demonstrated empathy towards me, and I was going to the lesson to be more when he said something and advised something to me than potential others. I am not saying that the other consultants did not know what they were doing, but there’s something about the connection we had because he spoke in my language. A bond and trust developed with this consultant when you first meet your doctor. You need to listen to your gut feeling and reside if he is the medical professional for you.
What keeps me positive during this journey?
Since I was diagnosed, I have been dedicated to raising awareness of the importance of continued research. Over several years now, I have given advice, support and awareness to men who had unfortunately followed a similar path. I advocate who works tirelessly to
bring that all-important patient voice to the conversation. Ensuring that I am heard loud and clear. I am highly motivated, extremely knowledgeable, and I have two books to my name motivated to inspire and invincibility in the face of cancer coming on the other side. I wrote these books to inspire, motivate, uplift, and educate men and their families about the disease in all the work I have done with advocacy, writing my books, and researching what is happening with me.
Lessons from cancer journey
There are different organizations and avenues that I was working with, and I realized that they seemed to be diverse individuals taking part in these programs or research opportunities. I can recall two projects I was involved in. One was to discuss new treatments being proposed in a room of a dozen men. I was the only black male in the room. I was also involved in a film project on diversity where I was only one of two black men out of twenty-plus men at the event. The other black man was also because I invited him. The organization could not find any black men to participate, which is a major problem in the research process. If we do not expose ourselves to the treatments given, how can they say that they work for us? I can only add that diverse groups are the way forward and that we need to listen more intently to what we are saying and what needs to be done for all people of all colors.
I want to say that I have now become quite involved in this work, and I am quite passionate about it. But I think those undertaking these research projects may be using the same tried and tested methods for these recruited projects and hence not getting any desired effects. For example, the recruitment of a more diverse cohort, some of my thoughts around improving diversity on research projects are as follows. The first thing is you bred to have trusted people in these communities that I will be recognised, listened to, and be respected because if you’re constantly being faced with people who do not look like you, I am sorry to say. Still, it is not going to work. There is excellent mistrust in a lot of research because of historically what has gone on before in areas. We also have to know that different communities ate in different places, and we already know there is a lot of inequality around health finance and social injustice with black and brown communities; therefore, recruit these people and retain them into research projects you have to go to then you cannot always expect them to come to you because that may not always happen. My brothers like me would like to see people that look like us coming to talk to us about participating in these research activities. Some of the reasons are that stigmas may be broken down, and sometimes you think that preconceived ideas that some people may have are not necessarily there. I am not saying I am right, but I would feel others.
Your medical professional is your partner in the business of destroying your cancer. While maintaining your quality of life, A medical professional can’t fix what they don’t know. If you feel that the two of you cannot have an open and stress-free conversation, you need to find someone you can establish a better relationship with. The best way to cure your prostate cancer is by having a medical professional who listens to you. And does not rush you into decisions you are not ready to make. Remember, when choices are limited, you might
have to compromise. Your cancer cells don’t care what your medical professional looks like; they fear only the best skillset and the most effective therapies.
Parting message to the cancer survivors
Consider prostate cancer as a chronic disease to manage with various treatments. Also, monitor yourself with blood tests and occasional scans. You will be ready to jump on the next course of treatment at an advantageous time if your cancer progresses. By thinking of your prostate cancer as a chronic disease, you will be less likely to feel disappointment, anxiety and depression if you need additional treatments. All I said till now is because of experience from the past ten years. In the end, I would like to say I am a man who, without clinical research and the treatments that have been developed for this research, I would not be here today, and I would like to see others like me also have the opportunity to participate in very important research work thank you very much indeed