Saturday, 15 June 2013

731 days later

Or, I suppose it's easier to count it as two years, (spread over a leap year hence the odd "1" at the end).

That's how long it's been since my husband took his last breath, since I became a widower and since the world as I knew it changed forever.

As I look back I recall it was a very long night following a very long day which was a roller coaster of emotions from 01:58 when I first received the call from the hospital advising me Stephen had become acutely unwell and asking if I'd like to visit him. I was there at 02:16 but it was after midday before I was allowed to see him.

By this time he was securely wrapped on a gurney hooked up to loads of machines with tubes and wires all over him ready to be put in an ambulance and sent with blue lights flashing to a neuroscience specialist unit.

Shortly after his arrival he was seen by a consultant who immediately came to advise me what he had found. Stephen was unresponsive to light. This meant little to me at that time but it basically meant he was already brain dead and, although a variety of machines were keeping the mechanics of his body "alive" the chances of him ever opening his eyes and smiling at me were gone. It was now just a waiting game.

We were told that sedatives would no longer be given to Stephen and eventually mechanical support would be withdrawn but, as he was a strong young man of 32 then we may have days as opposed to hours to say goodbye to him. This was like nature mocking us. Firstly it claimed Stephen too many years too soon and then it toyed with us and threatened to torture us for an indefinite period just waiting for the inevitable.

Stephens final hours were peaceful. It was 04:30 the following day when he exhaled his last breath. Fate had allowed Me, his parents, my parents, his brother and some friends the opportunity to say goodbye. Wishing he could stay but allowing him to leave and go on to wherever he had to go next.

The next few days, weeks and months are a bit of a blur. Gallons of tears, recalling some wonderful memories and feeling bitter and cheated at the cruelty of life.

Looking back though I learned lots at that time. I learned a lot about myself and about those around me. More importantly though looking back I can see that actually I am a stronger person than I realised and I still firmly believe things happen for a reason.

With this in mind I truly believe if Stephen could have gone to a "pick'n'mix" counter and build a new partner for me then the person I met just nine months later is precisely that person. I guess I have another guardian angel now. This one is called Stephen and I'm sure he's never far away.

Two years on and a lot has changed. I sometimes wonder what Steve would say if he could come back and have a chat and review the past two years with me. What would he tell me off for and what would make him proud? I can guess and I'd probably be pretty close.

Time hasn't made his passing a less bitter pill to swallow and it hasn't made the hurt any less but I've got used to this feeling. Like a numb ache you can't get rid of and the feeling that something isn't quite correct, like wearing your shoes on the wrong feet.

I have a lot more happy than sad days now and I have things to look forward to. I'm not sure if I will ever feel like I used to but I'm not sure I want to. I'm proud of my 'scars' and wear them like medals of an ongoing battle where every day is a triumph.

As I start my third year as a widower, all be it a partnered widower, there's a tinge of sadness for what may have been but, I am excited about what the coming year may bring.

Thank you Stephen for our happy years together, thank you for being my guardian angel and thank you for continuing to make me smile, even in your absence your memory makes me smile. Sleep peacefully. Finally though, thank you to my Jonathan for being so patient and understanding.

Love, hugs and best wishes to you too and to everyone who remembers Steve and looks back fondly.

Xx M xX

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