Life has been varied and I’ve experienced good times and bad as I'm sure we all have.
In no particular order I'm a Partner, Friend, Brother, Son and Widower trying to make a difference.
That's not an exhaustive list but its a good start.
Friday, 7 June 2013
Fifty - Fifty
That’s much better odds than you have of winning the lottery.Macmillan’s report today that by 2020 almost
half of the UK population will get Cancer during their lifetime comes as no
great surprise to those of us who have lived with or had a brush with
Cancer.How many of us buy a lottery
ticket and dream of what we will spend our winnings on?How many of us dream of how different life
would be if we won the 50:50 lottery of cancer?
It’s a fascinating but scary thought, as you look around the
room or think about those nearest and dearest to you that half of you will get
Cancer.That doesn’t mean you’re likely
to die from it, the odds on that are much higher.After I lost my Husband to Cancer I checked out
what the odds were of the situation I found myself in and was surprised to
learn that Stephen was more likely to win the Euro millions lottery on a Triple
rollover week than to get diagnosed with Glioblastoma Multiforme and die just
eight months later.
Stephen’s Cancer was a relatively rare, just Google it, the
simpler term would be Grade IV (4) Brain Tumour.Extremely aggressive and quick growing cancer
that rarely responds to even the strongest treatment.Median survival is 12 – 18 moths.It doesn’t make for pleasant reading,
especially not as the sun shines through the window and we think of the weekend
ahead but, it seems sooner or later we will all have to consider cancer and the
effect it will have on us or a loved one.
Prior to Stephen’s diagnosis in September 2010 we had rarely
considered Cancer or it’s effects but we were soon plunged into a strange and
unfamiliar world.Yes, we met fantastic
professionals who told us clearly what we could expect and to re-assure us that
they would do all they possibly could to give us the best, or longest, possible
future.We were told about support
available on an emotional or practical level too and introduced to some of the
wide ranges of support Macmillan, (http://www.macmillan.org.uk/Home.aspx
) amongst others, were able to offer.
Our experience of Macmillan was great, Stephen’s specialist
nurse, Alison, was great.Just knowing
she was there was a comfort.We sought
specialist support though as we wanted to learn and understand more about this
journey we were on.We found another
charity, BT Buddies (http://www.btbuddies.org.uk/
) and they were also great in providing clear and factual information specific
to Brain Cancer but when we looked for emotional support we struggled, we found
none that we felt met our needs although many wanted to help none really
understood our situation.
You see, as a gay couple Stephen and I felt our needs were
slightly different.We were processed in
the same way with no consideration for our situation.For example, we had the obligatory “fertility
talk” from a nurse explaining that Chemotherapy could affect Stephens chances
of fathering a child.We made light of
the situation, both giggled and flippantly asked the nurse if there had been
recent scientific breakthroughs meaning that men could bear children?It was uncomfortable for us all, the nurse
saying.... “Well I have to tell you”
even though whilst not mincing in on a cloud of pink glitter, we were clearly a
couple and were proud to say so, and often had to.
Throughout his treatment Stephen had regular appointments
with various doctors and consultants.This involved waiting in a large waiting room to be called to a small
consulting room.The pattern was usually
that the nurse would call out Stephen’s name, he would stand to identify
himself to her so she could take him to the consulting room and as I stood next
to him there would be a slightlyconfused look and she’d say... “and you are?”I’d have to identify myself as Stephen’s
husband and then she’d march us off to the consulting room.
Not such a big deal you may think.It may not be for us, we were/are not shy and
retiring types but imagine how difficult that is for someone who is.Someone who would prefer not to disclose
their sexuality or are simply not “out”.They have just been identified as a same sex couple in front of a busy
waiting room.It’s a simple thing that
adds to the stress and anxiety of the situation for a vulnerable patient. There were many other situations which Stephen
and I made light of but, had we been more sensitive types, we may have been
more upset by them.It was this
experience that made Stephen and I want to address this issue.
We searched throughout the UK for an LGBT (Lesbian, Gay, Bisexual
& Trans) service which provided specific support for cancer sufferers.We wanted to chat to other men to see how
they were dealing with their cancer and how it affected them, their families
and friends and found that there are none.A chance to talk to someone in the same situation and to share
experiences.Whilst the medical needs of
LGBT patients may be the same the emotional ones are not.When we realised there was no such support
though we decided we would remedy this, just as soon as Stephen got better.
Unfortunately he didn’t get better and he passed away almost
two years ago.His dream hasn’t died
with him though.With the help of some
friends I’ve now set up the first UK charity to help provide such support.It’s taken some time andLGBT Cancer Support (http://www.lgbtcancersupport.org.uk/
) is still in it’s infancy but we are here to help.We are not a replacement for any other
support service and see ourselves in part, as a signposting service toward
other specific and targeted support but our main aim is to support the LGBT
community, their friends and families living with a cancer diagnosis.We have plans to make a bigger difference but
this will take time, experience and of course money.Sometimes our questions or thoughts don’t
make sense and there is no logical reason to ask them such as, “would my Son
have got this Cancer if he wasn’t gay?” or “I feel embarrassed about my breasts since my
partner had a mastectomy” but if these are things which trouble us then why
shouldn’t we talk about them?
You’re right, we should
but members of the LGBT community are often concerned about homophobia.It still exists and it’s still in our
communities.Yes we may have legal
rights and laws protecting us but prejudice is ingrained in some and gay hate
crime is still a real and current threat.As gay marriage is debated by government gay men are being targeted and
attacked so is it any wonder we worry that we may not get the same treatment as
our heterosexual friends, or that we may be judged for our life choices.Let’s face it, the common perceptions of the
LGBT community are often those of hedonism and promiscuity but cancer doesn’t respect
or recognise age, sexuality or even those of a virtuous nature so we, as a
community, are also facing those 50:50 odds of getting Cancer during our
As I’ve said, Cancer isn’t something any of us want to think
about and of course I can only talk about it from the perspective of a Widower
who lost his husband to the disease.I can’t
change the world and I’m not going to discover a cure but, I can take my
experiences and channel them in to making a positive change in the lives of
those affected by Cancer.I hope to
never meet or hear from any of my readers as I hope none of you have to
experience the cruelty of Cancerbut please
keep me in the back of your mind and remember LGBT Cancer Support will be here
if you ever need them.