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.