Caja is HIV Negative!!!!!!

Caja is HIV Negative!!!!!!

Thank god for that!!

I do not know what god I am thanking as I have no religion - but I thank them all .

They told her orginally that she would not get her results until our next appointment at the HIV clinic next Wednesday - and I am sure if she had been positive that would have been the case because they would have wanted to see her face to face to give her that result.

But because she was clear, they thankfully rang her up just now and she rang me.

I have told Barry he is so relieved - that is an understatement

It is the only bit of good news we could have had at this stage - but I thank all the gods that people believe in

My beautiful daughter is OK

Can't be Arsed

I think what I should have said in my last post about how Barry and I feel about living with HIV is:

We just can't be Arsed!!!

We will for Caja's sake

but really can't be arsed

Trying to Live

I now have to try to live, to treat today as the first day of my new life living with HIV.

But how I hate that phrase, 'living with HIV'
Right now, for both of us, to live with it seems an impossibility .
And totally undesirable.

This is not because we do not understand that people do and can live quite a few years with HIV with medication. We can and have read the information, listened to everything everyone has had to say and tried to take it in..

And we know it is thought that some may reach a 'normal' lifespan i.e 70 to 80 years perhaps - others of course will not, seems to be just random luck.

But for us having got to our 50s without something like HIV we simply lack the desire, energy or willingness to live with HIV or want too. I think if we had got this our 30s or 40s our attitude would have been quite different. But thank god we did not for Caja's sake as had we, she would have probably been born to a mother with HIV - and so she may have had more chance of having it to.

But we just lack the will to want to 'bother' somehow with what living and trying to stay healthy and alive with HIV will entail and the constant fear that your health could break down as well has having to be on medication which will have side effects.

All just too much bother!
Quite honestly, both of us would rather die than live with it and die quite soon.

But neither of us want to die ill, so we have seriously talked about joint suicide once we have sorted out our affairs for Caja.

This is so different from how I have ever felt before, and certainly Barry.
Barry has always had robust mental health.
But I have gone through many things in my life including emotional and mental ill health.
Yet the one thing I have never truly been is suicidal.
Things have felt desperate as I am sure they have for everyone now and then, but I love life and always have too much of a sense that if you can just get through your latest challenge, something else better will be around the corner.

And of course for Barry suicide is as alien to him as joining the police force would be - he just would not even consider it under any circumstances - except this one.

The suicide option was/is not a cry for help or even considered on any emotional basis.
It seriously seemed a very practical thing to do and one that would solve the situation for both of us.

But of course the one thing that makes it not a good solution, is our daughter.
And I am only writing about this here because we have decided that this is a way out we can not take, because of our daughter.

If we had decided to do it we would not ever have mentioned it to anyone - you would never have heard about it.

But we have decided against it - and whatever the outcome of Caja's HIV test as she deserves as much life as she can get, and with support.

We have had a lot of our life, so it would not be a big loss to lose the last 20 or so years we had left - lets face it we are both in our mid 50s, the average lifespan is 80 in the UK, so this really was the last phrase of our life anyway

But it would not be fair for Caja and we have a responsibility to her to live as long as we can and support her for as long as we can and in anyway that she wants us too.

Even if she is HIV negative, she is an innocent victim of Barrys actions and even mine in a way. Because I knew he went to sea and where he worked and that there was always a possibility and I also knew that he would not tell me if he did.

So should really have insisted on regular trips to the GU clinic when he came home and not had sex with him until we knew he was OK.

Barry's CD4 and Viral load

Forgot to say - The results of Barry's CD4 and Viral load tests

His CD4 is 9 - god 9!!! - the threshold that they used to consider it AIDs ( along with viral load results ) is 200 apparently!!!!

So I am actually surprised that he is as well as he is!!!!!

Viral Load I think they said was 55,000? not as bad as his CD4 but still terrible!!!

But despite this he actually did seem a bit better today - but rang tonight to say he was vomiting. Poor Barry its really so miserable to be sick in a hospital bed, far worse than vomiting when at home.

This is probably a side effect of the Septrim ( god I'd never be able to take the drugs he is on) Well I hope it was a side effect.
All I can do is ring him in the morning and hope he feels better.

I had my tests - CD4 Viral load etc

I spent a few hours at the HIV clinic having my tests/medical today
Barry was let out of the ward to be with me and my feelings were so confused and so mixed.

On the one hand, while he is a little better I can see he is still not at all well at all and of course I love him very much and do not want him to be this ill, but on the other hand I just cannot stop being angry with him.

Not so much now that he made this mistake...............

We are both!! lonely when he is away and miss the touch of bodies the intimacy that due to his job we are BOTH denied when he has to work so far away from us.

But I can not forgive him right now for at least not getting checked at a GU clinic as soon as he came back to the UK , knowing he had taken such a risk and then when he was so ill and then diagnosed with HIV not telling me what he had done
But I HAVE to try to put this behind us

Don't know if I can
But I have to try

Caja came with us to the clinic today. It was really horrible knowing that our lovely 18 year old daughter was having to have an HIV test - not because she had taken risks

( I do not know if she has but that is her own business and I would support her whatever, but that she was at that clinic being checked for HIV NOT because of anything she has done but because what her parents have done)

What could be worse?

What added to the horror of it all is she is phobic about needles and injections, blood tests etc and I asked her last night and agian at he clinic if she wanted me to be with her when she had it, she said yes, both times.
But the HIV clinic nicely manipulated us so we could not be with her when she had the blood test!!

What makes them think they have this right!!!!

I asked to sit with her, Caja asked me to be with her, just for the actual blood test. But she is 18, legally an adult and they said they just had to ask her some questions first, which I totally understand as as she is 18 they would have to ask her questions about her own sexual contacts and activity - which of course she has had - and it would not be appropriate for us to be there as she needs to talk to the clinic herself about this OF COURSE!!

We completely respect her privacy
All I asked was to be allowed to be her mum and be with her when they did the actual blood test

But while we were kept occupied in another room they took her tests!!!!!!!
Without me and without giving me the option of sitting with her .

I am so angry - everything about this makes me angry!!!

There was totally nothing to do, I was so powerless -by the time I realised the test was done and they were ushering her out the door to go back to college or whatever......
.......tried to phone her but she is not yet back from college

Did they care how she was feeling , did they have any respect for how we felt?
It seems when you have HIV you have no rights
not even to support your own child.

Today they denied me the right to be her mum and support her.
The did not even do it out front and with honesty
If they had said no - you can not be with her while she has her test, this would be one thing.

But they were totally manipulative and dishonest. They kept us occupied in another room and did the test without telling us that this was what they were doing .

She is my daughter , my child do they really have this right even if she is 18, legally an adult especialy as she asked me to be there ??????????????????????????????????

And this is not anything of her doing, she is an innocent victim of this- even having to have the test I see as an abuse imposed by Barry and me
Surely it was my right to be 'allowed' to support her through it ?

Caja left and I had no option but to continue with my medical and my tests etc

My tests will not come back for at least a week - to find out what my HIV status is and if I need medication

At the moment I do not care about me or Barry - I just need to know that she is OK and not HIV positive too

And I HATE that clinic and the way they do things

Bad Moon Arising

For some reason lyrics of old songs from my youth seem to mean a lot to me and comfort me in a funny way.

'Bad Moon Arising' also hit home today .
Also by Credence Clearwater Revival
The lyrics both hurt and comfort this time.

Lets just say that I do see trouble on the way and bad times today. However good the HIV treatment is today this journey is not going to be easy.

And,
Dont go around tonight, Well, its bound to take your life, Theres a bad moon on the rise. I hear hurricanes ablowing. I know the end is coming soon. I fear rivers over flowing.I hear the voice of rage and ruin.

Relates to the plee I have always made to Barry about being 'careful out there' when he was at sea, and he did not listen but chose to go out that night and do what he did .

And all we can do now is:
'Get our things together and prepare to die' as it will happen to both of us sooner than we thought and be prepared to die.

I know that the HIV drugs are very effective - but can I take them? Not sure at all that I can .
'And once eye is taken for an eye' - yes his few minutes of fun certainly led to huge consequences

I will try to get myself together in the future to write sensibly about this

I see the bad moon arising.I see trouble on the way.I see earthquakes and lightnin.I see bad times today.
Chorus:Dont go around tonight,Well, its bound to take your life,Theres a bad moon on the rise.I hear hurricanes ablowing.I know the end is coming soon.I fear rivers over flowing.I hear the voice of rage and ruin.
ChorusAll right!Hope you got your things together.Hope you are quite prepared to die.Looks like were in for nasty weather.One eye is taken for an eye.

Test day

Today is the day Caja gets her HIV test and I get all the tests to determine my state of health!

Terrified ........................................

Neither of us will get the results until at least Friday - but this makes it all so deadly real.
Sorry about the dribble on my last post 'Heard it Through the Grapevine' but that song just makes me cry.

I Heard it Through the Grapevine

I was driving to see my counselor today, she is not an HIV counsellor but a great counselor

When the song, 'I Heard it Through the Grapevine' this was not the original version but one by Credence Clearwater Revival that I have never heard before. But it was very good perhaps better than the original.

And I just had to stop
The tears poured
Every word seemed to apply to my situation.

And in addition to it being one of my favorite songs from my youth it is one that 'morbidly' I have speculated I will play at Barry's funeral or he at mine.
As the words are just so appropriate for a final parting

i.e I heard it through the grapevine. that much longer will you be mine

But while the rest of the words are not so and may not apply to my situation , but somehow they still hit my heart and seemed meaningful for my situation with Barry now.

Not all of them but some words really hit home i.e

I heard it through the grapevine

( you did not tell me yourself that you had had sex with a Brazilian and that is why you got HIV, I had to force it out of you when I already knew because I had put two and two together )

That no longer will you be mine
( you are going to die, you are going leave me but not for another woman and certainly not the Brazilian girl you screwed, she is probably already dead by now, - I am actually so sorry for her too, I bet she did not get the benefit of the medical treatment we will - but you will leae us for your maker, who ever he or she is ...........
Maybe not this or next week but you have not got many years now you have theses symptoms)

Ooh, I bet you're wondering how I knew
About you're plans to make me blue

( you must have thought I would never realised otherwise why not even come clean when the chips were down and you had HIV. I bet you did wonder how I knew you had been unfaithful? but it does not take rocket science, I am not stupid but now I wonder if you are, and I know you very well and for 20 or more years)

You know I love you more.
( actually I do love you more but I am also VERY angry with you too)

It took me by surprise I must say,
When I found out yesterday.
( despite the impossibility of you getting HIV from anything but sex I wanted to believe so much so it did take me by surprise - I must be as stupid as you)

Oh and I'm just about to lose my mind.
( either that or I have already lost it!)

People say believe half of what you see, Son, and none of what you hear.
( I believed what I saw i.e you portrayed yourself as, a loving faithful family man, I believed all of what I heard from you i.e the times I have heard you say to others and to me how you could not understand anyone who was unfaithful or interested in wife swapping, illicit affairs, one night stands, open marriages etc, it just was not for you apparently , what a mug I was!!)

I can't help bein' confused
If it's true please tell me dear?

( I am fucking confused and if it was true - which it was - why did you not admit it from the start, why did you try to make me believe - and everyone else - that you got HIV from medical procedures when you knew you had not!!

Shame I suppose, but it is too late for shame what you should have been ashamed about was having sex with a woman in Brazil, where HIV is rife, without a thought for your wife and child back home )

And then once you had, not having the nonce to go to the GU clinic for a test for all STDs not just HIV - that is what is shameful)

Don't you know
( no you did not seem to know what you were risking and that is what is so incredible.

If I had ever had sex with anyone else in the last 25 years, even if I used safer sex, the first thing I would have done is to gone to the STD clinic - the second thing I would have done whatever the results would have been to tell you!!)


You could have told me yourself

( telling me yourself and not letting me have to guess and confront you would have just made so much difference - you coward)


Losin' you would end my life you see,
Cause you mean that much to me.

( despite it all that is how I feel, if you die before me , which as you are already ill I guess you will, it will end my life and you do mean that much to me,

despite my anger my main feeling is one of overwhelming sadness for us both

I wil never be able to hear this song again without tears

Here are the words in full ( I have changed them slightly for my situation so that guy reads gal) :

Ooh, I bet you're wondering how I knew
About you're plans to make me blue
With some other gal that you knew before.
Between the two of us gals
You know I love you more.
It took me by surprise I must say,
When I found out yesterday.
Don't you know that...

(Chorus:)I heard it through the grapevine
Not much longer would you be mine.
Oh I heard it through the grapevine,
Oh and I'm just about to lose my mind.
Honey, honey yeah.

I know that a girl ain't supposed to cry,
But these tears I can't hold inside.
Losin' you would end my life you see,
Cause you mean that much to me.
You could have told me yourself
That you love someone else. Instead...

(Chorus)I heard it through the grapevine
Not much longer would you be mine.
Oh I heard it through the grapevine,
Oh and I'm just about to lose my mind.
Honey, honey yeah.

People say believe half of what you see,
Son, and none of what you hear.
I can't help bein' confused
If it's true please tell me dear?
Do you plan to let me go
For the other gal you loved before?
Don't you know...(Chorus)

Today I feel ill 28/01/08

It has been a very difficult day for me today

Because I could not at first today phone or go and see Barry because I was just so damn angry with him that he had had sex and put us at risk and then - even when diagnosed HIV and them me diagnosed HIV- he had not even then come clean. He says he actually forgot he had ever done it!!

• On the one hand I have known Barry a VERY long time, and I know he has never lied to me - that in fact he almost finds it impossible to lie to me
• On the other I think - how could you ever FORGET that you had had sex with someone else, however brief??

I have a bad memory but I am damn sure I would not have forgotten something like this!!!!!

So while I have every right to be angry with him this doubt also denies me the support I need from him and he from me.
I eventually rang him today- he offered to never come back to us, he said take everything I have and if I recover from this infection I will go away somewhere on my own and leave you everything.

He kept saying

I am so sorry , I am so sorry!
And of course he is!

He is devastated and of course very ill
He is still my Barry and this does not devalue all the great times we have had together and the fact I love him.
I would never leave him and the last thing I want now is for us not to be together.

So we have to go forward from here - and we will - but he is a shit to have not said NO!! The one time it mattered. No is a very easy word.

He has said it to me often enough - so often I have wanted a kiss or a cuddle and of course at times sex and he has said NO more times than I ever have to him.

He fucking did not find it hard to say no to me ever - even when I was 'putting it out' to him because I really wanted it - why did he not say no to this girl!!!!!

But as well as this I have been panicking for myself today .
I am scared that I am getting ill

I know this is probably stress but again I have felt so ill myself today - and have done off and on even before I knew he and I were HIV. I have not felt entirely well for a year and not well at all for about 3 months.

Today I have had constant hot sweats, and nausea. I am OK for a while and then it comes in waves, if I eat anything 10 minutes later I am sick and vomiting and I am so scared of vomiting .

It is probably panic and stress over the situation - god I hope it is!!!!
But if I am right about when he brought this back and when I got infected, I have had HIV only 4 weeks after he did and he is now very ill!!!!

So I can not be sure that what I feel is panic
And right now I feel psychically horrible .

But everyone has been so wonderful , friends and family thank you for your support today

The truth is I am bloody so scared

Isentress New HIV drug

Chantal my sister rang me from Holland where she is working today.

To say there is a new drug for HIV positive people that has just been approved by the NHS and has less side effects and works in a new way.

It is called Isentress: see: http://www.pharmatimes.com/UKNews/article.aspx?id=12705
Hope it is the miracle they say it is, I will look into it - but I doubt it.

The nightmare continues

When will I wake up?

I keep feeling as if I am in a dream, lack of sleep and too much red wine does not help.

And that I will wake up and realise it was just a dream, I am not HIV positive, Barry is not HIV positive and their is no possibility of Caja being HIV positive!
But then I realise it is all true

Christmas just gone

Caja and her Dad at Christmas 2008

I thought I would post some 'nice stuff' about the Christmas just gone in case it is our last together as a family.
Me and the younger members of the family in Mousehole. Noni, me, Chantal, Caja

Chantal my sister

Medications and Plans

Talked to our niece yesterday - the respiratory doctor - and she said that Septrim is the right drug for him to be on.

Septrim may be an old medication but she said it still works for pcp pneumonia. Thank goodness we have a neice that knows as she is a doctor and in this area of work. Thank you for what you are doing to help us!

But I am also concerned that he is not yet on HIV drugs, which I think will be his best chance of beating this.

On one hand why do I care?

He has totally betrayed me and there is no way I can go and see him today and I do not know when or if I will feel able to go and see him.
For one thing I know that right now if I did I would hit him, yes, I would slap him hard in that hospital bed probably scream and rave at him and it would not be fair on those other poor patients in that bay. They don't need that disturbing them when they are so ill.

On the other hand I need him to get over this crisis, so he can come home to me and help me sort out all the things we have to sort out.
We need to sell this house - which also entails chucking out incredible amounts of junk we have accumulated, and I am just not physically up to doing this on my own.

And we then have to try to get enough for this house to buy Caja a small flat but one big enough for her to have a flat mate to help her pay the bills, and us a small place we can live in until he dies, or I do.

Where I live will have to be near the hospital, within 5 miles. I just can not drive or travel far when feeling unwell and I guess I will feel ill one day? And I need to be near enough to get to the HIV clinic at Treliske for checks and treatment, near enough to meet the people from the positively Kernow group and counsellors etc, and of course near enough to the hospital that if I need procedures or to be admitted it is near enough for me to get there if feeling ill and near enough for me to be able to do this on my own without having to get a friend or my daughter to drive me. I want to disrupt Caja's life as little as possible - we have interfered with her life too much already and others lives.

A tall order as anywhere I live will have to be within 5 miles of the Royal Cornwall Hospital, and house and flat prices are expensive that near to Truro.

But I am going to try.

Betrayed

Barry has blown it big time now- he may be dying - if not right now I doubt he will survive for more than a couple of years if he gets though this crisis .

And he has given me HIV and has the possibility his daughter ( who he does really love ) could have HIV too.

The thing is Barry lied??

He lied to me and has probably been lying about his life at sea for the 25 years I have been with him .
He has made a total mug out of me and I thought I was not that stupid .

He got HIV from sex with a pretty young Brazilian woman at a party in Rio!!

And I guess he had to bloody know his from the moment he was diagnosed but to the bitter end he kept lying to me
And I am very sure that was not the first time or the last although even now he says it was!!!!!
But how can I ever believe him now!! I feel he can not bear to be found out even when he is this ill so it seems even now he can not tell the complete truth.

This HIV did come from him having sex in Brazil with an attractive young woman, who sat on his lap at a party!! he said he felt flattered!!
A bloody good reason to risk HIV and bringing it home to your family that is - he was bloody flattered.

I told a few good friends about this late last night - why not I do not feel I owe Barry secrecy anymore and I need support - and at least 3 said 'are you sure it was a Brazilian girl and not a Brazilian boy'

At the time when this was said I instantly said
'Oh no, it was a girl not a boy, Barry is not gay at all'

But now I realise I don't know? I thought I knew but now all I know is I do not know anything for certain. If he can lie about where he got HIV, when there is no point as the chips are down and he is very ill, and when there may be a point in telling me as it may help my treatment to know where it came from ......................

Then I can not guarantee I know anything really about Barry now!
There are lots of 'closet queens' who have children and are 'good' family men but cruse toilets and Barry's job is ideal for being able to lead this sort of double life.

I really am not homophobic, I have had lesbian relationships myself though a very long time ago and have gay friends. It is the lack of honesty that is getting to me.
I do feel that in fact there is not chance that he has every had any gay contact, I think or used to think that I knew him well enough to know that he is as orientated to hetero as it is possible to be.

But it is this feeling that I can not trust anything he has told me about himself

I asked him how old this girl was she was he said at least 22. But the fact he called her a girl does make me doubt that as he calls women, women not girls. I am not saying he knowingly had sex with someone too young but the fact he called her a girl means that subconsciously he had a sense that she was not that old.

And I said if she looked 22 this means she was probably about 16 or even younger!! Women use make up to look older up until about 30 , after that they use it to look younger. So if she looked 22 she/he was probably the same age as his daughter is now!!

I never believed that he would be so stupid

I thought my life was shattered anyway - but it truly is now!!
And what makes it worse at a time I was very unwell myself due to the horse riding accident.

The other thing that makes it awful is I am not unattractive - Maybe I am unattractive now at nearly 55 and after an accident but certainly when I came to live here with Barry I was only 32 and pretty much still OK to look at and desired still by some. Over the years I have lived with Barry going away to sea I have had many invites to be unfaithful and at times I have been tempted - but I have always said NO!

While of course I wanted to be faithful to him and would not go out of my way not to be, but we are apart for months at a time when I then get no cuddles, sex or intimacy and I find this very hard.
A big factor in why I always said NO if the offer came around by accident was I thought he would always say NO too!!!

Over the years I have refused both men and women, as I have and still do have women friends who are lesbian and in terms of risk to have sex with a woman would not have been that risky, well not as much as with a man, but I did not want to betray his trust!!!!!!!!

I understand why he would be tempted as we are apart for 7 months a year due to his job as a marine engineer. We are all human. And at the time of this encounter with a Brazilian girl/boy I was in a wheelchair with a fixator on my leg.

Not very attractive to anyone I guess?
As you can see from a picture at the time - I do not think I have ever looked worse!!!!

This is an insult that he strayed when I was so ill, but I am mostly disgusted that he did not tell me as I have always made it VERY clear that he could tell me anything without risk to our relationship - I just felt I needed to know given where he worked, and one of the reasons I felt I needed to know was the risk of HIV!!
Which I have always been aware of.

But I am angry with him even more for not telling me when he was confirmed HIV positive and then found I was . He could have told me then , he had every opportunity but he did not!! He owed it to me to be honest then!!

He let me rabbit on in the HIV consultation to the consultant and Gina the HIV nurse and on here and to anyone who asked about what a 'faithful ' man he was and how there was no possibility of his HIV being picked up through sex !!???????
And let me tell everyone he got HIV completely innocently.

I believed this and he let me think it. Let the consultant think it - but in retrospect I can see she and the nurse was not buying it!!!!
What a complete mug he has made of me.

He told me also today that the man who took him to this party in Brazil has since died!!
I wonder what from - it could not be HIV/AIDs could it??? Bet it fucking was!!!

It was only when I put things together i.e that he had a horrible flue like thing that was really bad just after he came back from Brazil that time and then 4 weeks later I got it and the consultants and my niece asked me if we had ever had anything like this as this can be an acute HIV stage.

So yesterday I asked him to think about what had happened in Brazil on that trip away.

I was thinking it may be a medical or dentist thing, but then I started to realise that this was just so unlikely - so it had to be sex.

So I told him today I knew he had to have sex with someone HIV positive at around that time that he came clean - and he told me from a hospital bed that he may well never leave - three have died in his ward/bay since he has been there on Wednesday.

If I had not challenged him today in hospital , even as ill as he is he would not have told me.

I think now he has always led a 'double life' when at sea and it is this that has led/contributed to my being so unhappy over the years and having to have various counselling over the years and to find ways of coping with the situation.

As you sense it don't you ?

If you are told one thing and your instinct /awareness says it is different - yet you do know?- but if you love them and they have given you no reason to think that your instinct is right ??

All you can assume is that it is your problem that you do not feel 'right' about your situation or your relationship - so you try to solve it on your own - you take 'responsibility' for your own feelings, you try to live your life despite your fears and your 'gut' feeling, you get counseling - you try to get help

Barry is still in hospital acutely ill - he has PCP pneumonia which is what terminally ill AIDs patients can die of see: http://www.aidsmap.com/en/docs/D239B440-65DF-44B2-B957-1E94A8943AC2.asp

I am hoping with modern medicines they can sort it out and he can have some time home with us to help us sort out our situation

But time will tell - he is not very well at the moment
But right now I both love him and hate him

Side effects and IV

Poor Barry he is having side effects now

As well as his red face and chest he is now feeling really sick. Poor Barry I could not stand to feel sick and vomiting in a hospital bed and not at home - this has happened to me often , but I still can not stand it!!

He is on IV Septrim but this in itself worries me as, as far as I can find out as a lay person this is not really 'state of the art' treatment for an AIDS patient with PCP phenomena??? See: http://www.aidsmap.com/en/docs/D239B440-65DF-44B2-B957-1E94A8943AC2.asp

I keep getting told there are so many new drugs for those with HIV - but this is a very old drug ?????? Maybe it is still the best they have - if so God help us!!!

Oh god just read this:

Side-effects Some people are allergic to Septrin and develop reactions such as an itchy red rash, sometimes with fever. In affected people, this usually occurs during the second week of taking the drug. In rare cases these reactions are extremely serious, so they should be reported to your doctor at once. Anaemia (shortage of red blood cells) is the most common side-effect experienced at the higher doses used for treating PCP.

He is bright red!!!!

He has theses side effects!!
It could be dangerous!!


I phoned the ward
Got the usual dismissive reply

'there is nothing we can do as it is weekend. I will pass your concerns on to the doctor'

What doctor?? he does not even seem to have a main consultant!

It seems that Dr Couttes is his respiratory consultant and Dr Keanes his HIV consultant.

As far as I can work out Dr Keanes does not have any beds in the hospital and works 9 to 5 at the GU and seems only to be available to us on a Wednesdays!!!!!! at the GU clinic.
Dr Couttes is not available at the weekend - at least not this weekend - and neither Dr Keanes or Dr Couttes have got together to negotiate and work out the best treatment for Barry.

I would have thought he needs to be on 'aggressive' anti HIV therapy NOW!!!!!!

Not next week or sometime in the future when they finally get it together to tie up his results.

He needs to be on the proper antibiotics to target his bugs right now and anti HIV drugs all at the same time

I feel no confidence in the treatment he is getting and fear they are going to let him die!!
Not deliberately but because they really do not know how to deal with a HIV patient who already has symptoms.

Nursing in the NHS

Yesterday when I went to see Barry, he told me his sheets had not been changed since he got there!!
He was admitted on Wednesday and this was Saturday! I think he changed wards from the medical admissions ward to Wellington Ward late Wednesday.

In addition to this when his cannula had been put in he bled on his bottom sheet so he was sitting and sleeping on a big blood stain for most of that time!!

Appalling, at the very least sheets etc should be changed when soiled?
I was very angry and went gunning for the nurses, but because it was Saturday the only ones I could find right then were a student nurse and a young nursing assistant.

They were immediately defensive - that this could not happen, of course his sheets have been changed!!!!!!

Do they think Barry has lost his marbles as well as having HIV? Or do they think he would lie?

I was so angry.............
I said I can prove it

'You will have records made for when his cannula was fitted' - come and look. I made them look.
And took them to see the blood stain on then bottom sheet that had been there since Thursday at least !!!!!

They then changed his sheets and apologised.
But still defended themselves and the ward - said he/Barry had not been out of bed much and they only changed the sheets every 2 days anyway. But Barry gets up and dresses every day in jeans and tee shirt and has a shower in the morning and is only sitting on the top of his bed during the day and he finds his chair uncomfortable

He said he had seen them change the other men's sheets - most of the others in his bay are bedridden apart from him so I guess if someone can not get out of bed they change them routinely but Barry got overlooked because he can fend for himself a little - but it is still not at all right, he is not in his 70s or 80s like most on this bay and therefore can do stuff for himself but he is still very ill and needs proper nursing care!
And as he is mobile between IV drips anytime they wanted to change his bed they only had to ask and he would have sat in a chair or gone for a walk down the corridor .

Any excuse to thrust the blame back to the patient and not admit responsibility!!

I bet those nurses I complained to do not make a record of this incident so I can complain officially - but they may when on duty make sure Barry's sheets are changed and he is looked after properly.

Similar happened to me so may times when I was in hospital after my accident in 2003 and it shocked me then i.e the lack of nursing care

- as a patient I was appalled at some of basic care that was lacking both for me and other patients. I challenged so often over the lack of cleaning the lack of hygiene and precautions - but it is always someone else's fault and if they can blame you, the patient - they fucking will.

I agree Barry is too unassertive and too non-confrontational as he had known that they had not changed his sheets but he sat there and said nothing until he told me - he even made his bed every night since Wednesday himself before settling in for the night - if a nurse had done the minimum of personal care and just straightened his sheets they would have noticed the big bloodstain and changed the sheets ( I hope) but no one even did this for Barry .

What has happened to basic nursing skills and standards?

I went to see Barry for three hours at the hospital yesterday - three hours was the longest I could get on the parking meter without having to go back out to top it up.

It is so sad to see Barry, such a dignified, quiet man, lying on a hospital bed with a drip in his arm and oxygen up his nose.
He has had several different IV antibiotics tried and one by mouth, and none seem to have had much effect.

One of them turned him bright red on his chest and face as you can see from the picture, but they were not sure which one it is and being a weekend I only got to speak to a student nurse!

He says he is not having any other side effects, which is good. As every time I have been on IV antibiotics ( when I had the fixator on my leg and got infected and before this when I had peritonitis after my appendix burst) I have become very ill from side effects of the IV medication. One time I had anaphylactic shock and nearly died - at least he is tolerating theses drugs well- better than I would. ( which does make me worried for me if eventually I become unwell and have to have them)

But he just does not keep a note of what they are putting into his body. When I was there yesterday I asked the nurse who set up his latest IV what was in this and she said Septrim.

I am a bit worried about this now as I have looked it up and this is an 'older' antibiotic that was used in the early days of AIDs patients with pcp pneumonia. But many of them died!! i thought that treatment had moved on since then with lots of medication available to tackle such infections and he is on one used first for this in the 1980s?
And it is not seen now as being a very good idea to use for those with HIV: http://www.rethinking.org/bmj/response_34477.html

I am very concerned because they have not got the test results back to target his bugs specifically and being a weekend they may not until Monday.

And while they are trying different IV antibiotics they are not working as I know that if the IV antibiotic is having an effect you will start to feel better once one of two bags have run through.

But he does not feel any better - in fact he feels worse

He was able to walk around slowly when he first got there without too much chest pain and without coughing too much, but now he can hardly move without this. I worry that by Monday when they get the results, he will be so much worse. I am not feeling very confident at the moment about the treatment he is getting.

This is confirmed by the fact that when I go there yesterday ( Saturday) Barry said they had not changed his sheets since he had been there!!! He was admitted Wednesday!!!!!!

This is so shocking I will write about this in a new post.

How can people keep their dignity when they do not even get basic nursing care?

Tell me why did we have to ask?

Tell me why did we have to ask for an HIV test before we got one? I understand the reasons why this used to be wise - but is it now?

Even when Barry became very ill and I could see clearly that nothing else could really explain his symptoms -yet we still had to ask the GP to do the HIV test even though they had done lots of other blood tests they had not done this.

Why?
If the numerous locum GPs we saw when Barry had become seriously ill, had, Barry would have got the treatment in hospital he needed sooner and would now have a better chance of living with HIV healthily and for longer.

(We hardly ever saw the same GP twice when Barry became so ill as unfortunately at that time our GP was on paternity leave, but even our own GP would not have done a test unless we specifically asked! )

We should not have had to ask!
As other couples and individuals like us who truly believed that the chances of them ever becoming HIV positive was minimal, may not think to ask and they could die waiting to find out why they were so ill.

Today - trying to get support - A rant!!!

Oh God what a total nightmare

I am HIV positive, my husband is HIV positive, my daughter may be our lives are in tatters and all I get from any helpline or anything I contact is platitudes like' things have moved on since HIV was first diagnosed' - 'it is not a life sentence' - the treatments have moved on' - 'you can be HIV positive for years with few symptoms'

All of which I know and for me right now that is just not the point!!!!!!!!

Right now I have a husband seriously ill in hospital - he has PCP pneumonia which is something that you get when you have HIV infection and usually, at least in the past before the effective anti HIV drugs, when it has progressed to AIDs - he will not be home for some time - and a few days ago we did not even know either of us had HIV.

Right now I need people to talk to who are HIV positive and understand the shock this has been to a couple who lead a relatively 'HIV risk' free life and therefore never imagined that HIV was a possibility. How - for now at least - it has destroyed the life of a family, our hope and dreams, our expectations for retirement and older age now shattered.

Every help line I have tried has been answered by a gay man who seems to wear his HIV positive status like a badge and take pride in telling me how many years they have been positive.

This is not an attitude towards being HIV positive I believe I or Barry will ever be able to take. There is NOTHING positive about it for us, except the bloody virus!!

I do know they are trying to help and telling me that they have carried HIV for many years and are still relatively symptom free they are trying to reassure me that HIV does not mean we will both be dead by next month. Which I know! How ignorant do they think I am ? As I am not at all!! .
I do not need to be told this, I need to find a way of dealing and coming to terms with the turmoil this has caused my family right now and this is not helping much.

I/We are not homophobic - far from it - especially me as anyone who actually knows me, including the local gay community, will confirm - but I think I/we need to talk to other heterosexual couples maybe with children with HIV positive status.

Or right now if I need peer support with anyone with HIV I need to speak to women
( of any sexual orientation, being lesbian is not an issue for me as anyone who knows me will know, but that the person is HIV positive, is female and has children is very important)

i.e a woman or women who are HIV positive and have children to think of, and Barry, if he needs any peer support, needs to have contact with an HIV heterosexual family man, with children .

They must exist but so far I have found no one like this. I guess it is the nature of HIV that the gay community are 'out' and deal with it differently . Heterosexuals with it may feel more barriers against going public? Especially on the net?

But so far I have not found anyone as yet in any of the forums or any of the support orgs I have found. And I have not yet talked to one HIV positive person who has a child to think of too!

The Dairy - of our HIV Diagnosis

I started writing this in my dairy, before I was certain Barry was ill - I knew he was but as he could not see it and I did not know for sure I just wrote my thoughts in this dairy. I wrote it as I write a lot in my dairy. I always address it to who it is aboout , myself Barry or Caja.  I wrote most of what I went through when I had Post Natal Illness in my Dairy, http://www.pni.org.uk  but have never shared it.

Not even with Caja, even though she is now an adult and even though I addressed a lot to her even when she was a little baby. I never intened to share it with her then, nor Barry when I wrote this below. It was a record for me and perhaps to be shared later, if it is appropriate - as I am with this now.

This I am sharing because I now know I was right and Barry has HIV and so do I!

Always trust your instincts - you know yourself and your loved ones more than anyone else.

___________________________________________________

Friday, 16 February 2007

Dear Barry

I can’t say this to you right now – and I so hope I am wrong……….
But I think you are dying – at least you are very ill.

I love you so much – there is no unfinished business between us – you have always been my rock and I love you just more than I have ever been able to tell you.

Why do I think you are dying?

Because I have seen you wasting away – losing weight – sleeping whenever you have a spare moment to sleep –sweating in your sleep, no energy, no interest in sex, or even life really, looking so very ill……..

And yet your spirit is so full of life that you do not even get a sense of the fact you are dying or even that you are so ill. And that you have been for a long time.

You have never been aware of your body very much, or your state of health, so somehow you have not noticed – but I have

I have known you for some time now –over 22 years, actually longer as I think I first met you in 1979/80 but for a few years you were only a friend  – so I know you well enough to know - but how could I say?

How can I say that I sense you were not only ill but you are dying? When you were not even aware that you were even ill?
I have sensed death in others and I have never been wrong – but I did not think I would be sensing it in my husband who is only 55 if it was not so.

It’s just too soon……………….

Weirdly and out of the blue the other day a thought popped into my head  that you have HIV, or some rare tropical illness!!!

Why did I have this thought? On the surface I have no reason to have this thought. The GP dismisses your being unwell as late onset asthma or you are just run down and my worries are just a product of my own anxiety!

But I know well and you are VERY. VERY ill.
And because you are a seaman who has worked out of places like Africa, South America, Thailand, etc , etc for over 33 years now, yet your doctors have not seemed to take that into considerations and have not tested you even for malaria or any more rare illness that you can get in those countries.

And  because you have been in and out of the doctors for some months and you are getting worse each and every day and no one has come up with a reason and you have had so many test and none have come up with anything .

And I am ill too! Not as ill as you but I have felt so awful myself for over a year and had many tests too and all they say  - it is all in your mind!! - probably due to my history of Post Natal Illness etc they assume anything is in my mind if they do not have any other explaination - this is the story of my life with doctors. 

 Even when I nearly died of a burst apendicitus when I was 31 until it was nearly too late I was told it was anxiety, and when in labour I knew my daughter was dying inside me they told me it was also 'all in my mind!

Yet she , and I nearly died and we  only survived due to a lanst minute C - section that I was partially awake for - the horror of this I can not explain - as their was not enough time to do an epidural or even knock me out properly with a general and still save our lives!!

And when Caja 'failed to thrive' at 6 to 10 months I was told it was my anxiety that was affecting her health or I was not looking after her properly! Yet I knew it was not this and later it was confirmed she was born with a heart problem.
Be warned , if you have had mental health issues in the past and any illness is put down to anxiety by your doctors , you could, and your loved ones,  be in gave danger.

I have been in this position many times and do not want any other person ever to be.

I know beyond doubt I am not  at this time suffering any mental health issues right now so I know I am physically ill and so is Barry.



And I have known others with HIV and you just seem to be the same.
But what evidence do I have besides just a feeling?

You have never said you were unfaithful and even I know that the most common way, and probably the only way these days as you are not a drug user is to have sex with someone with HIV?

And every time you come home from sea, before we have sex I have for the entire over 20+ years of our marriage asked you if you have been unfaithful while away, and you have always said no.

I did not ask because I do not trust you but because you are human and often away in these countries for months at a time and I have seen the way women target the seamen in the hope of landing one and making a better life for themselves in the UK.

And I know how they can be persistent, atteactive and hard to resist, and as a youth worker who has run HIV awareness workshops in my job and worked with those with HIV I know how easy it can be to get if you have sex with someone infected.
And the countries you go to have a high prevalence of HIV in all, including heterosexual women.

But you always say you have been faithful so I have to think that this was just my paranoia, my mental fragile mental health, that made me think this – but underneath I know it is not, that it could be true – I hope not, GOD I so hope I am so wrong!!!!!!!!!

But most of all I know you so well that I have a sense that you are not long for life.

I so hope/wish that I am wrong.
But we will know soon.
Maybe I already knew……………but…………..

I have to get you to have a test and have one myself.
The doctors have never suggested it and I have been reluctant to say I may not believe you and to insist on a HIV test.

But I must, even just to put my mind at rest. I love you. I do not want to watch you die anymore.

When you came home and said about your symptoms – prostrate symptoms – I that this must be a reason for your ill health!
That it was not my imagination all these months
When you came home for the doctor and said your prostrate was enlarged! – I thought I knew!
That it was not my imagination all these months.
When you came home and said you had blood in your urine – I knew!
That it was not my imagination all these months


You are going to a course on Monday and you have to travel many hours by plane and then drive when tired (at a time when you are so ill and tired that you sleep the minute you lie on our sofa) yet you are going to fly to Leeds and drive to Newcastle and then do the course and drive back to catch the plane at 7 which means starting before 5 in the morning……

And I so do not want you to go!!!!!!!!!!!!

But what can I say?

If I say this it will either make you think I am mad, or if you believe me - make you scared too.

I just know that if I am right that you would rather not know until you absolutely have to – until you are in pain or so ill you can not function.

I so love you

But I look at you now and wonder how you are functioning now – how can anyone that thin, that ill and that tired function??
But somehow you do
You are amazing and I love you and just so very much

August 2007

You seem to have been better recently. The steroids seem to have helped a little – but I am still so worried.
You sleep every opportunity you have – this is just not right, you never do this. You do not seem right at all.
I have seen illness and people with HIV

I just hope that this worry is my madness – but really do not think it is .
I know time will tell

I love you

Sunday, 06 January 2008

Dear Barry I love you so much

I started to write what I did last year in Feb 07 – thinking that it was just an obsession of mine and if I wrote it down I would see how daft it was and look back at it as a passing silliness of mine.
But you seem now to be so ill to me. I am really so worried
I love you so much – you have given me so much.

But I am even more scared now.

Today is your Birthday

You came back from sea before Christmas looking like death warmed up – but you tried and as usual did not tell me how ill you were feeling. And I always take what people say not what my instincts tell me as I am always worried they my instincts are wrong – that they are just figments of my potently sick mind.

So I nagged you that you were not doing enough and there was so much to be done round the house that I could not do. And you just did not seem to be able to complete the simplest of tasks.
Of course you have always had difficulties when home in completing jobs because – I guess – you feel that you are on holiday and only want to potter. So at first I confused it with this.
But it quickly became apparent how ill you really are. Even you could not override your body any more

It soon became apparent that you were just too ill to do anything.

As usually you would not recognise how ill you actually were and would not go to the doctor and wasted at least two weeks when you could have been getting medical help in trying to sort out what was/is wrong. And instead you gave up smoking, which really was not the issue as you could not have smoked anyway as you were too ill and your breathing was too bad for you to have smoked anyway.

You rallied for Christmas when Chantal was down, with the help of steroids, and over- rode what your body was telling you, and you were ever hopeful whenever you got a new medication from the doctor. It is amazing how you can ignore your body and illness when you have reason to – I guess this is how you have been able to do the job you do all theses years? Because you have so much confidence in your ability to cope with the un-copeable.

I so admire you for this as I can not do this at all, as I can not.

I think you are ill enough to be in hospital, but then again if you got a hospital acquired infection I do not think you would survive it as you are and you would hate hospital anyway, so maybe it is better that you are here.
Why am I so worried?

Because only I see you at your worst.

You are so good at putting on an act when anyone else is around or when you need to do something. You do it for everyone, even for doctors and for Caja yet you are not even aware that you are doing this.

But when you are just with me and are lying on your bed or on the sofa, I see a man that if I saw him in a hospital bed I would feel he was not long for this world.

Please understand that I do not want this to be so!!!! I desperately want to be wrong!! Please let me be wrong!!!

Tuesday, 08 January 2008

The results of the blood test for HIV are back and of course they won’t fucking talk to me!!
But she did say there was information and something had shown up.

Now I am thinking of what could match his symptoms..
Leukaemia due to the radon is the first thing that springs to mind, Hepatitis, even HIVs as I have long been worried about this and he has lost so much weight. Otherwise cancer – not lung as this would have shown up in the Chest X Ray, but somewhere else.

God I hope it is none of those things but if it is Leukaemia or cancer we are moving from this house – the Radon has already got Gill, I do not want anyone else to get it.

We have to ring Anna at Helston surgery – or rather Barry has to – before 6pm today. God at least we may get some answers or at least more tests and sooner.

I still can’t help but think he is very seriously ill. I guess we will know soon.
I hope not but I think I am prepared for the worst.

08/01/2008 18:47:54

It was a waste of time – they rang him about the blood tests just to tell him the electrolytes test as to be repeated in a month!!!? And all they found was lowered electrolytes, which is not surprising as he has had weeks of watery diarrhoea. Why can't they find out what is wrong with him? He is really so very ill, at some points I have felt he was actually dieing at home in front of my eyes and without any medical treatment and without us being taken seriously!!!

He goes back to the doctor tomorrow.

13/01/2008

Doctor did not do anything when he went but Barry got far worse in the meantime

So I phoned the surgery on Friday night 11/01/08 as I was just so worried about him – he could not get up, he could not breath, he had a terrible taste in his mouth and could not eat!! He was weak and listless and cold, he just lay there staring into space. I was scared he was dying!! I have seen patents in hospital much less ill than he is . But he would not let me call an ambulance so I tried NHS direct and then the doctor’s surgery.

It took all day for the doctor to ring back and then he would not come out!! As they just do not think you are ill. Our GP is still convinced your illness is somehow only in my head!!
 But he did say his blood tests were a little ‘unusual’ and showed he had had a serious infection, but seemed to think that this was dealt with, but to bring him in first thing Monday Morning.
I was worried Barry would not make Monday morning but the doctor just did not seem to be concerned enough to see him

So that night in desperation I made Barry start taking the steroids again. They are not a ‘cure’ but did seem to help over Christmas so I was hoping they would improve him so he was OK to go to the GP on Monday.
They have worked he is a lot better, eating, getting up and doing a bit. But I know that they are only keeping him stable and are not a cure. Have to wait until Monday.

14/01/2008

Finally got a doctor who is listening and taking it seriously – thank god.

This is the GP who I rang on Friday who will be substituting Dr Old who is on paternity leave and at last someone is doing the right things. He has ordered more chest X Rays and more blood tests, including, hepatitis, TB, some obscure tropical diseases, malaria and HIV as he worked for many years in Africa
Barry has a consultant’s appointment on the 31/01/08

Barry, the toad, told the doctor something he has never told me before. That in Malabo (Africa) while waiting to join ship, he went out with an AB to a ‘girly’ bar and was chemically coshed in his beer and woke up in the street with all his money and other things gone !! He does not know what happened or if he had sex with any of the girls!!! Nor did he check his arms for needle marks – he is so stupid sometimes.

This is a part of Africa with a lot of HIV and other infections and he was in a girly bar with prostitutes!!!
He did not tell me because he was embarrassed! I am pretty sure he would not have had sex I doubt he would have been capable, he was probably just ‘rolled’ for his money, but he really should have told me! As this could affect me too!!

Monday, 21 January 2008 10.15am

So Scared!

Barry has just gone off to see the doctor as at last they seem to have found something in his blood tests!

Barry was called by the GP very early 8.40 am to go in at 10am to 'discuss' his blood test and other test results' He has not long gone.

This can only mean that they have found something as his next doctor’s appt was not until Friday and this was only that he should phone them to see how he was doing and usually when there is no substantial results they just tell you over the phone or when you next go in.

I am sure it will be quite bad - I just know Barry is very ill, but what is it?

He had every test under the sun, including hepatitis, TB, some I think for some tropical diseases, malaria and HIV as he worked for many years in Africa...On the one hand I am really glad if they have found something as he is definitely pretty ill and it is horrible not know why - but on the other I am scared about what it might be.?I think he is too, but does not want me to come with him?

Last weeks blood tests did show that he had had pleurisy or pneumonia - they did not know which as it was Christmas when he was ill with this and we just did not get anything taken seriously and so he was just put on antibiotics with no tests over the Christmas and New Year...
But they can tell now from his blood counts and antibodies or something that he had either pleurisy or pneumonia but not which?

But this did not explain his continuing symptoms as the antibiotics he has been on seem to have dealt with those germs, so the GP said getting theses may be just a part of low health as you can get theses along with other infections or conditions .I am just hoping that what is wrong is a by product of the pleurisy or pneumonia - like ME for instance as I have know others get ME after a major infection that was not treated soon enough. Oh well I will know soon! I hope

Monday, 21 January 2008 12.33

He has a positive HIV test!!
God what can I say
Everything I have feared has been confirmed!!!!

He is banking on the second test being negative – but I used to run HIV awareness weekends so I know quite a bit about it.

And I know the chances of a false positive are so very slim. And with his weight loss and his tiredness over the last year or two, and his recent symptoms - that the chances that this test was wrong are millions to 1!!

I have Caja to think of now and I may well be HIV positive too. I have been ill, not myself, but while  I have been tired recently and generally not as well as I might be, I am not as ill as you.

But I have to have a test; I know that catching HIV from sex as infrequently as we do it given that he is also away at sea 7 months a year is not as high as it might be.

But of course I probably have it too. We love each other and have a loving relationship and thought there was no reason to have 'safe sex' so I am probably and positive too.

Thursday, 24 January 2008 14 30

Went with Barry to see HIV consultant yesterday. Confirmed HIV and  he was admitted straight into hospital from the clinic into hospital due to his breathing.

I had to travel home 20 miles by myself - the worse journey I have ever had to do, as I feel very ill and know now he has HIV and I have it too, even though I have not yet got the results of my test.

Next Day
He is still in hospital. Had a bronchoscopy today – not heard how it went as yet as the nurse who is looking after him was not available? Will have to ring back again

I got the results of my HIV test – I am HIV positive too!

No counselling offered, they told me by phone. I was on my own - I am soooooo scared.
Oh Christ ! what about Caja?

They asked me to bring her to the HIV clinic with me next Wednesday as we thought Barry should be out of hospital by then.\

But he is now too ill, he has PCP - Pneumocystis pneumonia (PCP) or pneumocystosis - an AIDS defning illness: http://en.wikipedia.org/wiki/Pneumocystis_pneumonia

He is so very ill but they said he could be taken to the clinic from the ward  to be with us from his ward to support us through Caja's test . She needs to have the test too, she has agreed to do it and it is her choice.

She is being very brave and not upset on the surface. But if she was HIV positive too, this could change.

I have to have the same tests as Barry – god I hope I do not need to go into hospital, I just could not stand that right now.
On the one hand I definitely do not have the lung difficulties he does but I do keep feeling hot and then cold and sick and vomit now and then and have unstoppable diarrhoea . But this could be stress, because of this dreadful news over such a short period of time, only time will tell

Thursday, 26 January 2008 14 55

Just learned that many people when first infected with HIV get an acute stage in the first week or so. I was asked by Nonni ( our niece who is a respiratory physician currently doing a PHD in the subject, many people with HIV get respiratory infections so she has worked with those with HIV) if we remembered anything like this.
This acute HIV illness is called 'sero conversion'

Symptoms can include fever, hot and cold sweats a rash and flu like symptoms.
See: http://aids.about.com/od/newlydiagnosed/a/hivsymptom.htm

Symptoms Early After Infection - Acute HIV - In emergency departments and family practise offices, people come in with symptoms like fever, headache, muscle and joint pain, sore throat, rash and diarrhoea. In response to these symptoms, physicians diagnose the flu and send the patient on their way. In the majority of cases, their diagnosis proves correct. But unfortunately, a number of people with these vague, indistinct symptoms have a more serious illness than the flu; these symptoms may signal the acute stages of HIV infection.

This makes me think of when Barry came back from Brazil when I was in hospital for the second time with my fixator -see other blog here for an explanation of my fixator: http://pni-org.blogspot.com/2006/03/bionic-leg.html

And he had that terrible bug when he had all of the above symptoms, and then 3 weeks later I had it!!!

It was awful as I was just so ill anyway with the fixator and the associated infections and more difficult because I was lying on my bed with that dreadful frame at the time and by the time I got it he was back at sea, so I was on my own.

I have to ask him if anything at all happened to him when in Brazil before he came home and had this thing, that he can think of that he could have contracted HIV

I think he was unfaithful to me!!!! And not just the 'girly' bar when he was mugged!

Veritee

The last few days - A lot can happen in a few days

This is the background to why I am writing this blog - I wrote this to a UK HIV Internet forum and never got one reply. So I decided to write my thoughts on my own blog
______________________________________________________

Where to start? We are both in our 50s.

I have not yet been diagnosed HIV positive as am awaiting results of a test taken today Tuesday 22nd January 2008. Last week we never would have thought HIV would be in our lives - how bloody wrong can you be?

I had the test because my husband of 21 years has just had a positive HIV test! He had the test because he has been unwell for over a year at least and over the last 4 months or more become very ill with weight loss and everything else to explain why he continued to have so many infections and was so unwell and thin, night sweets, fever etc had been tested for.

I eventually insisted on the HIV test last week although his doctor seemed to think it was unlikely - but it was the only thing I could think of that explained his symptoms and continuing ill health.

I thought it a remote possibility because he has worked in various places in Africa and South America etc as a marine engineer for many years. And it seems I was right as he is positive!!!!!!!

He got these earth shattering results on Friday 18th January 2008.

They have cross checked the sample to make sure but he has had another test just to be certain, but I know the chances of a false positive are slim - my husband is in denial and hoping the second test will come up clear, I am pretty sure it will not. My husband is a seaman working at sea for more than 26 years in countries like Africa and south America, Thailand etc. He is away from home at least 7 months of every year in about 2 to 3 month blocks.

He is heterosexual - with no uncertainty that he is not - has never used any intravenous drugs and says he has not has sex ever with any women ( or men) while away, or with anyone but me since we got together many, many years ago. I do believe him as sex has never been his priority but I am a realist so it could have happened.

It really does not bother me how he got it, in terms of apportioning blame - I do not blame him whatever way he got this.

But it does matter to me that he got it and where? As I truly believe that if it was not for his job and the failure of his company to fulfill their 'duty of care' properly for men like Barry who work for them in theses very dangerous parts of the world - He would not now have HIV!!!

I am absolutely certain of this!! And I plan to try to sue his company - I probably will not get anywhere as they are bound to argue I can not prove he did not have 'unsafe' sex in one of those countries he has worked in with high HIV. But I can prove he is not a drug user as his company do random drug and alcohol tests and I can prove that he is of a 'sober' and non- risk taking disposition while away at sea as I know many men he has worked with over the years will sign affidavits to this effect. And his friends and neighbours will give evidence that while home he is a steady family man who takes no risks.

I am going to attempt to take his company to the cleaners on grounds that the company did not fulfill their duty of care or welfare responsibilities.

I love him very much so my only other concern otherwise is he does have it and I may too.

But at present our doctor is working on the premise that he contracted HIV either though an intravenous drip he had in a Local Caracas Hospital in Venezuela last year or a few years before when he had dentistry by a local dentist while working off the coast of Africa.

But it could have happened before, as he has had procedures for small accidents at sea in local hospitals a few times, or from an incident when he was chemically coshed in Malabo, Equatorial Guinea, Africa at a time when it was very unsafe as it was in the middle of a political coupe - the one Mark Thatcher was involved in - and woke up in a terrible state, in the street, with no money, remembering nothing, with injuries, after visiting a bar.

He works for Maersk the biggest shipping company in the world and the do not even ensure their employees get proper protection when onshore waiting to join or leaving when in dangerous parts of the world or safe safe medical care.......
He gets no private medical care at all.
God right now I hate that company - Maersk Stinks!!!!!!!!!

But we just really do not know yet - it is very doubtful - well impossible as he is never apart form me when home at all - it would have been contracted in the UK

We both have an appointment at a GU clinic with a consultant tomorrow morning - Wednesday 23rd January 2008 . We are both in shock.

I was a youth worker for many years and for a time worked on an HIV awareness project and knew and worked with people HIV positive so am not as ignorant about it as my husband , who knows nothing. But this was in the 90s and so my knowledge is way out of date. Very scared and worried about the implications for our lives, his job, our life insurance, our mortgage and for our 18 year old daughter Very upset Thank you so much if anyone is listening.