Saturday, 28 January 2012

How I met Barry

This is what I wrote on facebook about how I met Barry and why I am with him.
And still with him even though he gave me HIV

There is a lot more too it than this in fact . I would have to write a book to include all that happened for me and for him, but this is it in short - very short!!

I do not fool myself that anyone, other than me, will care or anyone wll read this except for me but I want to record it as part of our journey together.
As this was why I started this blog, as our own personal journey from diagnosis with HIV

Also/in addition!!
I so hope my lovely daughter will one day see this and know for certain that whatever a 'pigs ear' I made of bringing her up and however bad it was for her............unlike my own experience, she was born totally out of love , and we love her, she is part of out love  and always will be.

Love you so much Caja!!!!!!

I met my now husband in 1980 through a friend -  Mary Beaman.... love you Mary sorry we have drawn apart ............  while living in south London. She lived in the flat under mine in fact.

Barry became one of my best friends.

At the time I was a feminist and at times promiscuous but mostly with women, and while I had sex with some men, my only serious relationships were with women as men had abused me, let me down and so many other things I truly felt I would never have a serious relationship with a man again, although I still fancied them sexually.

But I did have a sexual  on and off relationship with a folk musician at the time called Pete and before that someone called Richard  ( who I had been seeing on and off since I was 16 years old!!!) 

Neither abused me but also neither respected me in my view or saw me as any real prospect for any real relationship or saw me really as anything but an easy available - to them, an easy lay!!

Little did they seem to realise that  in terms of men, they were the only ones I was available to and the only men I had anything to do with sexually and for many years)

And really I would then not consider to enter Barry, my lovely friend Barry into my world as it was then.
As he was such an innocent, compared to me he so was!! He would say he was not, but honestly he was! He knew how to drink and smoke a bit of dope but in terms of sexual relationships he had only ever had 4 and all of those were long term. I loved my innocent friend Barry.

We all, or mostly , think of men as those who  have the upper hand, and it is men who abuse women?
Yes I think by and large this is so

 But by then I had had enough of being abused, taken for a ride, treated like a piece of dog dirt

~So by then I took what I wanted , and when I wanted.
If anyone was abused then it was Barry by me !!


Barry and I were therefore friends for over 4 years and I never considered having sex with him as basically our friendship was too precious and so rare that  I felt that to do so would change the equality of it and ruin our friendship.
He didn't try and in fact was unlike me, he was  someone who did not ever have random sex, not with anyone.

He had only ever had sex with 4 people in his life - he was over 30 by then- and i knew he would not have sex with me unless we were in a long term relationship and I did not want to alter our friendship as I did not think I ever wanted a long term relationship

And he seemed to want me as a friend only.

Then in 1984 he decided he was bored with living in London and the shallowness of his life in London when he was home from sea, basically drinking partying, smoking a lot of dope,  and having fun, or rather trying to have fun. But in fact it was not fun, he felt empty and wanted a different life.............................

 So he decided to move deep in the country as far away from London as possible and bought a small cottage in Cornwall.

While he was preparing to move I realised I could not live without my now best friend and I loved him.
But I was too scared to act on this and did not want to change or influence his plans as I did not think it fair to do so. And did not know if i could have a proper relationship with a man, and knew this was all he would ever want.
So I remained his friend, supported him to move to Cornwall, 250 miles away..
I also had a VERY senior and well paid job as a senior youth worker, I was in my 30s at the top of my career, owned a lovely flat in Wimbledon London had lots of friends and a good life and knew that in backward rural Cornwall I would never get a job at this level again.
But I missed him so much, he missed me, I visited him in Cornwall every holiday and he visited me for 2 weeks when home from sea.
 One day when staying with him in Cornwall we had sex and I realised I really loved this man. I knw it before, it was not the sex, but this somehow made it clear!!
It turned out he did not want to pressurise me so until 1986 we conducted a long distance relationship.
Seeing each other only every 10 weeks or so when he was not at sea this was a time when there was no Internet, phone calls were so very expensive etc and he was at sea with no way of contacting him for months at a time.
It was a totally different world than the one we all live in now!!

I continued to have on off relationships with others, but I was very unhappy and missed him.

In the end I suddenly had enough. In the space of a week I suddenly decided to throw my life as it was then to the winds
I decided to sell my flat, leave my job and just risk everything and move down to his cottage in Cornwall just to be with him.

Which I did.

In the space of  3 months I sold my flat left my job  - I had been there 7 years and had a job at West 14 Girls House, Based at :  73 Talgarth Road, London, W14,+London,+W14&um=1&ie=UTF-8&hq=&hnear=0x48760f9591289595:0x40ffcb921cf5ed10,73+Talgarth+Rd,+London+W14+9DJ&gl=uk&ei=3yElT9TSMqHU0QW_s-TOCg&sa=X&oi=geocode_result&ct=title&resnum=1&ved=0CCIQ8gEwAA

Such a shame as I can see on Google that it is no longer any kind of youth house or charity, as it is now a privately owned house.

 Yet I gave it my best shot and my most productive working years and I so hoped that it would continue after I left. But I know it folded very shortly after I left.

Maybe now they know how much work I put into it??
I agree I may not have  been a great employee!!!!

But I did my very best and they did not sack me and I truly
loved the girls and young women I worked if my management did not sack me that was their problem and I thought in fact I was very good value for their money??

But they would have found it hard to get rid of me????
 However in 1986 I gave up this secure job and a job I loved......because I wanted to be with Barry

  - So I sold my flat and I then bought an old Luton van, packed absolutely everything I owned into it and my 2 cats and drove  250 miles to Cornwall

I was risking everything as he would not commit - It turned out because he knew I would not be able to work at the level I had in Cornwall and he was a friend as well as a lover and did not want to destroy or be responsible for altering my life.
 But I did not know this so drove with everything I owned to his cottage in Cornwall not knowing if he would not want me there
 Luckily, for me,  he did, with all his heart.
He is just not a risk taker and would also not do anything to risk my life either.

The rest is history. I was right I never did get a job at the level I was at in London in Cornwall. I did work for 14 years as a youth worker here but it was a very sexist work environment and women did not stand a chance at a senior job. Things changed in the end,  but far too late for me, as by then I was burnt out and ill.

But we sold Barry's cottage bought a rambling derelict smallholding together with  the money from the sale of my flat money and his money from the sale of his small cottage in Ashton.

We have been renovating it now since 1986 - a lifetimes work .....for what I now  sometimes wonder ???? It is our home and a lovley view but wonder sometimes if it has been worth the effort of over 20 years of renovation, just to live in a smallholding?
We had a daughter in 1989 - after many attempts and miscarriages ........maybe I should not have tried but we so wanted our daughter , a child of our own that was begot from us both - it was hell the fact I miscarried several times and Caja's birth.....well several times and I so nearly died .........we are both so very lucky to be here now
......but I am so very grateful I had her.S he is amazing.  I just hope one day she reads this and will feel the same too??

We also had foster child before Caja one after wards and it is now 2011 and we are still together and always will be

This is why when people question that because he was unfaithful just once during a stupid drunk moment when working away at sea for 6 months, lonely and probably because he was 50 and had never sown any wild oat sexually so had his only moment of madness in his life, and and people question it was more than once and he was a serial adulterer, I know this is not possible!!

I know him so well and know that sadly that brief encounter with that woman in Brazil was the only risk he has ever taken in his life and how much he regretted it even before it was finished .

And I am so sad for him that unlike many he could not even get away with just one fling!!

 As he got HIV from just one time and gave it to me and lives with guilt every day despite the fact I have long forgiven him and I do not want my lovely husband to feel guilt.

 And we are in this together to death do us part , just as we always were and HIV alters nothing in terms of our relationship.

Me?? My Heath etc

Me??My health problems are minor compared to Barry's, as I do not have cancer like he does.  So I truck on, we both do.

But I do have disabilities and conditions as well as HIV that affect my life. And all but the ankle fusion has happened since I got HIV

I have an ankle fusion so I have to walk with a stick and it affects my ability to do many things, high blood pressure and high cholesterol ( both common in people with HIV and on certain drugs and the drugs increase the liopids in your blood. Barry is on the same HIV meds and he has high cholesterol too and we are both on statins that gives us side effects)

I have psoriasis which is so very irritating and I did not have this before HIV.

But the most limiting thing is I have had  severe problems with my hands for the last couple of years.
This makes even typing this blog so very difficult - which is another reason I do not update it often.

I already knew I have carpel tunnel and cubital tunnel syndrome in my hands but also something more than this was going that affects my left hand and wrist mostly but also my right slightly,  but I could not get a diagnosis for a very long time.

But I have now found out what it is thankfully ? As I have been diagnosed with Kienbocks Disease at stage 3 in the last 15 months. Kienbocks is a very rare condition that is a form of avascula necrosis in your writs/s. Whereby a small bone, the lunate dies in your wrist or wrist due to restricted blood flow and the bone collapses which is painful and affects the use of your wrist and hand.'s-Disease.htm

Above is an Xray of my wrist where you can plainly see the lumate bone is dead as it is very white.
This Xray was before it started to break down, it is worse now as it is breaking up.
You might think that one tiny bone can not be much of a problem??

But believe me you need EVERY!! bone in your wrists to work perfectly so as to have articulation and therefore proper use of your wrist and hands. Also you are constantly moving your wrist and hands and a dead bone is like having a permanently broken bone in your wrist and as it is forever you can not wear a cast forever and it would not heal anyway, so you are constantly moving a broken wrists and the pain is considerable.

It is not really known what causes it but a fall or blow to your wrist can set it off and also avascula necrosis of all kinds is a condition that people like me who had undiagnosed HIV for long enough for their immune system to be seriously damaged do get. But usually in the hips not in the wrist. So my Kibebocks could be due to this? Another reason everyone to be regularly tested for HIV and to know your status - its too late for me.

I had an operation to relieve the Kienbock pain and symptoms in November 2011, it did help a bit. I had denervation - a process whereby they cut some of the nerves to the bone so you do not feel the pain, but it did not do a lot and it is incurable - like HIV sadly -'s_disease

Untreated it will get worse and my wrist become misshapen and unusable and when this happens they said they will fuse it but for now want to keep the flexibility in my wrist as long as possible.

At the same time as this operation I also had decompression of the cubital nerve on my left wrists which has partially helped.

I do really need the carpel tunnel syndrome operation and the cubital nerve decompresed on my right. However it was suggested , and I agreed as I really do not want to have more operations and general anaesthetics than need be, to wait until I need my left wrist fused and have the carpel tunnel on my left done at the same time and then the right cubital and carpel at a later date once I have recovered from the wrist fusion.

I have been told that that in my case Kienbocks could be due to having undiagnosed HIV ? But who really knows? Not my doctors it seems?
All I know is I have HIV and now I have Kienbocks and life is now changed forever for me!!
Well that is all the sob story you will get here

Sorry if this is gloomy, but I wanted to put my blog up to date, but we both truck on
And I having done so I will resume by blog updates on a more positive theme from now on.

Doctors & Consultants do not always know best - so always question!!

We have been quiet for the last few months as we have had a lot to cope with........... And it is ours to cope with who cares really except us?

But I wrote this on facebook, so I may as well share here?


My husband has a history of early Prostrate cancer in his family, his older brothers have prostrate problems, one has prostrate cancer and their father and other males in their family died of it.

Yet he got a negative reaction here in the UK when he asked to be checked for prostrate cancer just over 2 years ago . He is now just 60, he was then 57. He was told he was worrying about nothing and he was too young to have prostrate cancer?!

His internal examination by his GP was very so brief and showed nothing and Barrys prostrate did not seem to be enlarged to this doctor, but the PSA test was high and this was a GP, not someone who specialises in cancer.
However despite high PSA he was told at his age he would/COULD!! not have it!!

But we knew better and fought and insisted it was investigated further.
He eventually had a biopsy - which is the only way of really knowing!!

It turned out he had stage T2a prostrate cancer - probably not outside the prostrate but would swiftly be if left and of an aggressive nature.

He has now just completed 'Permanent Seed Brachytherapy' - a very up to date and effective radiotherapy that we had to fight to get and Barry had to travel outside Cornwall to get as they do not do it here in Cornwall, UK.

We are waiting to see if he is clear? To know for certain may take some years


But we have had such a fight with our doctors to get this for Barry !!

They wanted to give him a radical prostatectomy!!! Which would 87% leave him with urine incontinence and wearing a catheter for life and almost certainly impotent!!

Many treatments for Prostrate cancer leave men with some impotence but with prostatectomy it is almost certain.
And it is not neccessary except in cases of very advanced cancer and Barry was not at that stage and a prostatectomy is rarely done on someone of Barrys age anyway!!!

So why did they offer him only a prostatectomy and why did we have to fight to get a less radical treatment?
Because he had HIV that is why and those treating him were not up to date with recent research on radiotherapy and those with HIV and referred to a way out of date research , done in the 80s and in America that said men with HIV can not have Radiotherapy of any kind because they do not heal. 

But this research was done in the 80s, before the modern HIV meds and about bowel not prostrate cancer. Up to date research has shown there is no risk now!

The worse thing about this for me was is as soon as they said Barry could not have any form of Radiotherapy due to HIV, I knew 100% they were wrong!!

But I am NOT medically trained and I was so scared I could not prove it. And I had to as Barry said he would rather die than have a prostatectomy and I knew he meant it!!
So I was faced with the daunting task of proving to a team of oncologists and urologists that they were wrong!
And I will not go into the details, but I did prove it, but it was not easy. 
 I even had to find the up to date, peer reviewed research, and even give them a volume number and page number of the medical journal it was published in and supporting information!!
Why as the wife of a patient did I have to do this?? It is not right - thank you NHS!
I support the NHS with all my heart, but in this case they really let us down! Could not these highly trained doctors be able to get over their ignorance about HIV as it is now and read up on latest research??

But I did prove it - Barry did not have to have a prostatectomy -

But even so it has been so hard a journey over the last year or so.

I just can not tell you how hard and I can not go into the full extent of our battles over the last year or so, just to get Barry treated at an early enough stage.......but believe me the doctors certainly thought they knew better than us......and it turned out they did not at all!!! - His consultant even apologised!!!

I of course do not have prostrate cancer but I am sure affected by it !!As I have been Barry's nurse, companion and only support through it all.

Barry was able to have Brachytherapy which is less intrusive than regular radiotherapy and may indeed be cured - we do not know yet we are waiting to find out.
It has affected him in so may ways that I can not go into , but just let me say , the last year has been very difficult to say the least.

And he  is in fact now parcially impotent - as so many men after treatment for Prostrate cancer are.

Brachytherapy is supposed to affect sexual function the least but all do and Barry was not one of the lucky ones.

This may resolve in time however and I hope it does. As we have tried everything now,  Cialis, Viagra and Levitra, etc. And  he can not bring himself to inject his penis and I agree if this is not for him, it is not for us!!!!!!  and as someone with prostate cancer he gets all this free in the UK,

But nothing works. This may seem a small problem, and of course it is not compared to living and surviving prostrate or any cancer but sex is part of a quality of life for us all?

And believe me it is a very big thing for a man , especially a man like Barry who is so full of life and wants to live it and is only 60!! Men can beget children and be potent until their 90s , so to be impotent from 58 is a very big thing!!!

So this will may improve but has not so far and and I will live with this happily but he has more problem with this than I?

Not good for either of us - but it is better to be alive


I have not written on here for so very  long ................

I started this blog thinking - stupidly? - that to write it may help others avoid what we have, by avoiding HIV, and that I could aise awareness.~but I have been so very disheartened as I am no longer sure that those who do not realise hat they have a risk want to know they have any risk?

That so many just want to believe that HIV could NEVER affect them and could never be part of their lives?

So for the last many months, I just kept thinking what is the point, who is interested anyway? I do not want to dwell on what we face and who cares anyway? - we care but it is our stuff and ours to face

But now I am back. This is our record for us, and our friends and perhaps for our daughter who we so love despite the fact right I know she does not think she wants to know right now ansd mybe she never will?? But this is us , her parents, the ony ones she wil ever have.

And I did not have a good story either but while sh may not want to know now,  I know many years later I would so have wanted to know about how my parents saw it -warts and all -  .

So here goes.......................................................................