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, ( ) 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 ( ) 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 slightly  confused 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 and  LGBT Cancer Support ( ) 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 lifetime.
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 Cancer  but please keep me in the back of your mind and remember LGBT Cancer Support will be here if you ever need them.

Take care,
Mark x 

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