Men talking helping other men talk

Sharing a private matter

I am just listening to a programme on BBC Radio 4 – Room 5 where I think people talk about life-changing diagnoses of personal consequence. Today, it was about Jon, tall, successful, nice young family and ticking all the boxes. [BBC Radio 4 – Room 5 – Jon]

He was at Peppa Pig World with his family a couple of years ago when he discovered something wrong with his body, secretions from his penis that his GP first treated as a rash or basic infection, then he was referred to a Genitourinary Medicine (GUM) clinic where they determined he did not have a sexually transmitted infection. Now, I already suspected what it might be.

Anyway, after researching online, he found a consultant that diagnosed that he had penile cancer and it had spread to one of the lymph nodes, it was advanced, but also treatable and so they arranged the programme of treatment that has now put the cancer in remission apart from making Jon a totally changed man.

Time to be expressive

I share this story because it has resonance with me in many ways that I have written about before. As men we find it difficult to take about health issues, an irritation in a private place with the accompanying discomfort that we dismiss as trivial even as we are caught up in the embarrassment and tongue-tied when it matters.

Men are dying of conditions that are treatable if caught on time, prostate cancer especially, but also penile cancer and breast cancer, yes, men get it too. We need to cross that barrier that stops us getting help. Only you can properly explain how you feel for a doctor to begin a proper diagnosis or set you on a course of the treatment that would give you that best outcomes, you need to have your voice speaking loud, clear, without fear, shame, or embarrassment.

On sex and sexual organs, the words describing them should not be taboo and move out of the category of profanity. Penis, arse hole, scrotum, balls, buttocks, breast or whatever colloquialism or vernacular gives meaning to what you are referring to need to be words you can use freely in a describing how and what you are feeling as your life might depend on it, it is no time to be coy or shy.

You are going to be touched and prodded in places you have never been touched before or where you have not intended was touchable. Heck! Your life depends on touching the right places to feel and see what is wrong. You can’t play offensive when a situation has made you defensive.

Where my manliness was foolish

In early 2009, I allowed what appeared to be athlete’s foot to develop into a stinking sore half-aware that it might be related to a much earlier HIV diagnosis. That sore turned out to be Kaposi’s sarcoma, a kind of skin cancer and a manifestation in my own case of full-blown AIDS. My condition was that serious that at diagnosis in September of that year, I was given the prognosis that it was treatable if I could tolerate the treatment, else, I had only 5 weeks to live.

The treatment worked because there was a body of knowledge and experience garnered from people and many of whom had not survived that became the canon on which specialists could claim and assert confidence to tackle my condition. I was put on antiretroviral (ARV) drugs that I am still on and seven sessions of chemotherapy over 5 months to put the cancer in remission and reverse AIDS to the point where I have had an undetectable viral load of HIV for over 12 years.

Responsibility and acceptance

I know I contracted HIV through reckless and unsafe sex practices, I have come to terms with the responsibility and consequence of my own actions, however, I do not live in guilt or regret of that, I have a life to live and I intend for whatever time I have left to live it well. In the process, I have learnt to speak freely and liberally especially with medical personnel about how I am feeling, promptly, directly and without mincing words.

However, many diagnoses are not of commission or omission, they are accidents of nature bringing adversity, infirmity and challenges with them. We are left with ourselves and the help we can get to face these situations with the hope that we might surmount them and get to tell a better story.

My voice for my choice

To a team, I once had so say, “It’s my body first, before it is your guinea-pig.”, when I was challenging the determination for intrusive treatment not long after my ordeal with chemotherapy. To another, when I was seeking treatment for another condition, I was blunt about being aware of my mortality as a result of co-morbidities for which immediate action was taken. When I was asked to change to medication that gave me no quality of life, I presented the daily dairy of recorded side effects and contra-indications, and at my request, I was put back on my original drug regime.

I am in my knowledge and understanding as good as my medical notes, if not better. It comes from genuine self-interest and awareness along with the freedom and willingness to talk to address any medical situation I am facing. Then, I encourage the invitation and sitting in of medical students on my consultations, I believe that not only can they learn from my condition, that experience can also go into helping others. I would normally engagement them to appreciate what areas of study and research they want to specialise in.

All the help available

Obviously, for the outcomes I have had, I have to thank the open-minded, professional, considerate doctors in their humanity who have listened, understood, helped, and encouraged me on my path to wellness, their expertise applied with respect and consideration has been lifesaving in so many ways.

To us men, when you feel something, have it checked out and follow the full course with all the advice and help you can get, speak up, speak loudly and if you are not getting the best outcomes possible, challenge the orthodoxy. It is always your body first, before it is anyone’s guinea pig, no matter how good they are at what they do.