My way of letting off steam!

So what can I tell you that is important to me?

Well it is 100% important to me to tell you that I am a 76 year old gay man who has been ‘out’ for many years and who has been an LGBT activist ever since that time when I began to be open to the world about my sexuality. And, this gay man, is happily married to Nigel, and they ‘tied the knot’ just 4 years ago.

Why did I wait so long to find Mr. Right? It wasn’t like that; Nigel is my third ‘Mr. Right’. The first one lasted almost 30 years, finally finishing with the horrors of his profound Alzheimers and him being found dead on our beach after leaving the residential home where he had been for eight years.
The second one lasted just 7 years when he succumbed to mesothelioma (an asbestos related cancer) and he sadly died too.
As I say, with a smile on my face, when I’m speaking to groups, Nigel feels kind of vulnerable as he continues the journey with me.

So that’s the first set of important things out of the way.
The next thing is that I first found a lump in my chest some 18 years ago but it turned out to be just fatty tissue, and since then I’ve been checking myself over, as and when. In December 2015 I found one again, and I didn’t need convincing that this might be something really quite serious, and so it was. A mastectomy followed, and the sentinel nodes were also removed, and I completed a course of radiotherapy in August 2016. I did not have chemotherapy.

How did I react to the news? I have to confess that after all the shit of previous years experiences, and there is more than I mentioned, I just sort of said to myself ‘well here we go again’. My husband simply said ‘that’s a shock’ and then we sat, looked at each other and quite purposely, set about working out what coping strategies we might need in order to get through this. Our friends reacted to the news with the same shock and surprise but made clear that they were going to be there for us and laughed with me when I grimly said that I might be looking for someone interested in buying just one nipple ring!

Brave eh? In truth, not a bit of it. The horrors returned every night as I tried to get to sleep and I was so grateful to have someone to hold me and calm me down and I often thought of those single people, faced with a similar diagnosis, who had no one to hold and whose thoughts like mine might range from facing the surgery to perhaps facing the end.

Together we devised our coping strategies. We would be in it together – phew! And Nigel quickly decided that his role was to provide the glass half full approach to life, as an antidote to my glass half empty attitude. Goodness, how I’ve appreciated that over the months.

Now on my first round of medication I started to search the web for forums and chat lines concerned with breast cancer. It was a relief to see that the side effects of treatment and medication I was experiencing were not specially different from what others were going through but I could have done without it. I also began a regimen to ensure recovery and to increase my physical fitness and so every other day I do a couple of miles of brisk walking and it does my neurotic mind a power of good, despite sometimes looking a hundred years old when I return. We live just a few metres from the ocean and the sights and the sounds do me a power of good. I often shout out loud ‘behold, the sea, itself’ (Walt Whitman) and, no doubt, passers by think ‘there goes that silly old man again’.

Without the walking I still feel annoyingly tired at times and there are side effects from my treatment and the consequent medication which are trying and which are probably unavoidable. I’ve been used to be extremely proactive from the start of my retirement but now I’ve had to accept a more gentle approach to living.

From the start I had decided that there was to be no doubt, both in my mind and in my contacts with all others, that this new ‘story’ was to be about a gay man with breast cancer, rather than one about a man with breast cancer who also happened to be gay. I hope you might understand the difference.

This approach didn’t begin well, however. Faced with the very new experience of being in a hospital ward and surrounded by straight male patients I amazed myself by going straight back into the closet. I even begged Nigel not to kiss me when he came to visit and I felt so guilty about it. How could I do that!

However, since then there has been no fudging of the issue. I’m not a wimp and so this new experience has to be the time when I need to say to all and sundry; to women with the condition; to health service professionals; and to anyone else, that if you intend to relate to me then you will have to engage with my sexuality as an equal feature of my experience of having breast cancer.

So for me there is a two string approach to coping with my condition and to how I would like to be supported. The first is the fact that, unexpectedly, I find myself part of another minority, one numbering just 350 per year in the UK, compared to the thousands of women, similarly afflicted. And, because, as a gay man, I know too well the value of group identity and community support, I know how much I need what I am not receiving, namely the presence and support of other men with the same condition.

Unbelievably in spite of regularly using the social media in the UK for this purpose, I have not been able to make contact even with just one man and up until only very recently I have not found the various breast cancer charities willing to be proactive in enabling such contacts.

And the second string? Inevitably that has to have a gay element to it. I am starting to give up the possibility of finding other gay men who also have the condition. Within our community contact with each other has been the life blood for our survival – we are not separatist but we like being together. For me the social and psychological benefits of finding other gay men who have breast cancer would be huge but demographically I know that it is not very likely. Thank god I have a partner. And this fact forces me back to wanting to say ‘What about those single men and women facing this challenge? Where are the organisations focussing on such people’s unique feelings and needs? When will charities and support organisations wake up to the fact that we live in a world where you can no longer assume people to be in the same kind of family relationships that we have known in the past?’

How do I view the future? Well we have decided to be more sensible and talk about the creative, and sustaining use of the ‘now’. Yes we do plan and look forward to holidays, and meeting up with friends, and doing all those things which have made our lives so rich. But the secret to our living is ensuring that for us ‘the best of times is now’. Its not easy to keep to that aim and not everyone can do it but, for us, it remains the way in which to live our lives to the best.

Good wishes to all our fellow men in the same situation. Never underestimate the psychological and social significance of your existence.

 

It was over 20 years ago when I wrote to the Alzheimers Society. I was caring for my partner David, who was severely ill with the condition, and I felt I needed to call attention to the fact that all of the Society’s publicity materials and stories seemed to assume the presence of a caring husband or wife and a supportive family as they went through this most terrible of all conditions. I wanted to say that there were carers and those with dementia out there, single, not in a family situation, and perhaps gay too.

Last year I was diagnosed with cancer – not prostate, as you might understandably assume, but breast cancer. And I have to say that over the last 18 months I have had a fair share of déjà vu experiences, not unlike the ones I had with the Alzheimers Society all those years ago. It was then and remains a matter of inclusion and equality.
On average annually there are 350 men who are diagnosed with the condition and that means, over a 5 year period, 1750 of us are likely to be surviving and coping with the effects of our treatment. I will not allow that this is a small number and of people of little consequence.

So how has it been for me? I have to admit that my initial experience of coping with the disease was positive. I was given helpful booklets targeted at men and my care was probably no different from all those thousands of women who share the same condition. I have met a lot of empathic people who did their best to support me and I am grateful.
However, in the cold light of day, I have gradually started to feel less positive about my care and more dissatisfied with how things are going.

Eighteen months ago the mantra ‘men get it too’ was sufficient to make me feel included and wanted but I have now started to ask questions about my breast cancer care. For example, why are the images related to breast cancer usually feminine ones? It doesn’t hurt to show the occasionally man; it can’t involve extra cost and if it succeeds in encouraging men to identify with the condition then that can’t fail but make us feel good; it might also encourage men, especially those with a family history of the disease to regularly check themselves for lumps.

Then again language matters and its right use can provide a feeling of inclusion. I still see phrases like ‘women with breast cancer’ when ‘people with breast cancer’or ‘women and men with breast cancer’ are fairer alternatives. If organisations and charities are able to say ‘men get it too’ then they should take an extra step by giving the simplest but also strongest impression that us men are included and are an equal part of the system.
Then let us recognise that 350 men per annum all have stories and these need to be told and be heard and should be a regular feature of all materials which charities and support organisations publish. I already know that the response will be ‘if only we could get them to do it’ but the lack of such stories will continue if the approach is simply reactive and not proactive. If we males with the condition are not good at communicating our needs then organisations need to be more proactive to help us to do so. We are equals and need to be seen to be so.

I am a fortunate man. I have a loving partner who provides the best support I could wish for and we are not afraid to talk about having cancer! I cannot tell you how liberating that experience is, and I hasten to believe that most other men might find it so. But there is also huge value in sharing with others with the same condition. When dealing with such a relatively small number, achieving person- to-person contact is not easy, though groups in the USA and Australia exist based on websites and social media. So far such contact has not been achieved in the UK and it has been suggested to me that age, non-use of the internet, and ‘embarrassment’ to talk about the condition, might impede the formation of support groups. This places the ball firmly in the court of charities and health providers who have the contacts with BC men and could be proactive in forming such groups.

Finally, and perhaps more importantly there is the issue of our treatment. I am starting to ask some fundamental questions and am discovering that fundamental answers are not always available. For example: Is female breast cancer congruent with male breast cancer? Do we have the evidence that the available medication has the same effectiveness for men and women? Do we really know why so few men succumb to the disease? And there are other questions too.

It is not encouraging for us men to be told that finding answers has to take into consideration the fact that there are so few of us and research money is short.
So it is an interesting world where we men are calling for more focus; where we men have to yell to be included; and where we die sooner than women because we are not women. It is a fact that our later diagnosis means our prognosis is worse.

On October 20th my partner and I, in common with many men all over the world, will be saying ‘think of us and support us too’ and we will be proudly wearing our t shirts which proclaim ‘Breast Cancer. Men get it too’.

https://www.churchtimes.co.uk/articles/2017/25-august/news/uk/john-bell-why-i-came-out#.WaPoc1i6zFE.twitter

Permit me to say a few words about this article.

It isn’t necessarily easy for anyone to ‘come out’ about their sexuality and when it is done it is rarely without some cost.
But fortunately we are now where we are because over the years people, sometimes with great courage, have acknowledged their sexuality and have realised that they are happier, more fulfilled, healthier and more honest when they have said publicly ‘I am gay’. Nowadays we can listen to and read the stories of those brave people who took the step and, sometimes despite persecution, knew that it was better to be ‘out’ rather than to stay ‘in’, and often such people are inspiring. All these people have paved the way for us and we should be grateful.

This article from last week’s Church Times was therefore good to read, because every ‘coming out’ should be applauded, but it only gets two cheers from me.

So, come on, John tell us more, if you will.

Are you really saying that its only recently that you realised you were gay? Or have you been hanging on for the arrival of that safe day when you could finally spill the beans? Some of us did not have the luxury of such safety.

Is it really the case that that tragic story of the Manchester school girl forced the acknowledgement out of you, or would you have stayed in the closet if you hadn’t read the story?
It surely couldn’t have been just a preacher’s device to get empathy from a potentially difficult sermon, could it? I don’t want to sound cynical.

And what sort of counselling and support have you given over the years to those who were in the same situation as you, and have there been times when you really haven’t been true to yourself? Come on, tell us the truth. Its ok, in our community we are quite big on forgiveness.

Finally, can we now expect more positive words and actions from you to combat the possibly resulting antagonism to your, in my eyes, very limited courage. You have a greater responsibility now to yourself and us, in the wider LGBT community. We look forward to hearing more from you.

Well, John, your new journey has only just begun – good luck.

The Rainbow Dementia Cafe

https://m.youtube.com/watch?v=ajn401u7CFo&feature=youtu.be

Opening Doors London, that wonderful organisation for older LGBTs has embarked on a project which will provide a meeting point and support for LGBT people with dementia and their carers too.

This video launches the project and it is hoped that all dementia groups and all LGBT people will spread the message and encourage its success.

 

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Don’t give me all that ‘isn’t Christmas wonderful?’ stuff. OK, if you aren’t surrounded by unwanted relatives nor, even worse, by tragedy which seems to like this month to drag you down, then it can bring happiness, but for me it has often been a grim time, and it starts dead on December 1st.

This early December Sunday was typical of so many others. Dark by 4 pm, and with a cold dankness which reaches right to your bones. At such times surely best to stay in, reach for whatever booze might be available, and fix your eyes on some dreadful TV programme; but not on this particular day.

At 5 pm, with an unvarying determination, I decided on the number of layers I needed, dressed, opened the front door, and launched myself into the darkness.

Just a few hundred yards down the road was my venue. It was a hospital, which had seen better days in its history, but which still catered for some special medical needs, and also provided a school for children who were not yet well enough to be catapulted into the challenging life of regular education. This hospital also had a secret which only a few of us were very well aware of.

I had become initiated into that secrecy not many months before in some other hospitals. Such as at the Mildmay in the East End where, before you visited, stringent checks were made on your identity and a clear mandate from the patient was needed. Or at St. Bartholomews in Smithfield, where no one seemed to know of a ward with the name I was visiting and where, once I had found it, I was intensely questioned as soon as I entered it. And, at a more local hospital where the staff nurse insisted I scrub up before entering. This secret shared with other places was the reason why I was there on this evening.

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Adjacent to this hospital courtyard was a grossly oversized church. More high than wide, mostly unused, and rapidly becoming disused, I found my way in and looked around. Others had already arrived and some I recognised. We did not greet each other warmly, there was just a nod of awareness and all resumed their silent steadfast gaze towards the altar. Others were there also though not known to me. There was almost a sense of feeling brave for being there; a sense that in some situations we would not like it known that we were there or had been there; and even a feeling of danger present.
However we were clearly there to worship God and before long, a priest, well known to me and seemingly to all the others present, stood and began a service which guided our thoughts and, more especially, focused on a loss, which for many present, was acute.
The priest seemed to share our need for secrecy. It was obvious that many in the congregation were gay and his identification with us, though complete, harboured a shared secret for him too. We knew that he was doing this service officially, but gladly, because his bishop had given him the role to serve us, but for him, as for everyone involved it was clear that it had been best not to advertise the event.
We prayed, mumbled a hymn and then lit a candle for each other. Silently we named a person or people who were the reason for our presence. They were mostly men but some were women too, and all had been beautiful people, who had done nothing wrong. They had loved, and known the joy of sex, some had been drug takers, and, desperately, some had simply followed medical advice and had received a transfusion of blood, which should have had a huge skull and crossbones printed on its packaging, because it was infected.

Some of our named people were currently being cared for in the adjacent hospital, not known to the population at large why they were there, but most were now dead and others, like those in the hospital, would be sure to follow them.

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The condition we were acknowledging was, of course, called AIDS and, in the west, it had become mostly associated with a person’s sexuality. Some newspapers had disgracefully called it ‘the gay plague’ and so, by implication, society had begun to be suspicious of all of us who shared this sexuality – all gay people, it was assumed, would become likely victims because of our common nature.

What had previously been a time of feeling safer about acknowledging our sexuality was now terminated because of this disease, and suspicion had taken its place. ‘Don’t even touch them’, was a maxim felt by many. Someone I know, who was gay, had a niece’s new born child abruptly taken from his arms by another relative – you never knew if there was a danger, even by touching!

And so we were forced back into ourselves. We had become more careful, more insecure, and also more suspicious of others. It was back into the closet time. But, there was an upside, we also organised; we buddied our wounded right up to the time of their departure; we fed those whose strength had sapped and could not feed themselves; we were not afraid to be numbered with them; and we made our beautiful memorial quilts as a testimony to them and as a sign of our wonderful innate creativity.
And there were also the unique victims who simply by their need for blood had been given a death sentence because their transfusion consisted of infected blood. The haemophiliacs, and those with other serious conditions now shared a common fate with those in the gay community and who, with their families, shared much of the prejudice which the media and the ignorant had stirred up. Some also developed AIDS and had to keep secret about the fate that dared not speak its name.

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It is only now, too long since, that the iniquity of those times and the failures of some authorities are being exposed. They have blood on their hands and, like Lady Macbeth, cannot wash themselves clean.

So, back to our December church evening, we completed our worship and went our ways, returning to our grieving and to serving those in such dire need. It would be many years before our confidence was restored.

Times have since changed and medicine has advanced but all too many still bear the scars of others failures and behaviour.

It is time again to remember and learn and act.

 

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