Thursday, 1 March 2018

Barrys prostate cancer story continues

Is anyone really interested. I doubt it but I m writing this for myself.
Anyway re Barrys prostate cancer treatment.

When he got there yesterday, they said they could not do the radiotherapy straight away as planned. Because of two reasons.

One because he had Brachytherapy, originally, which is radioactive beads inserted in his prostate..

And they are now unsure with those in place - they never come out, in for life unless you have your prostate removed - that they can do radiotherapy?

Even though the noduals are not in the prostate but in the abdomen they have to be careful that the radiotherapy goes no where near those.

So it has to be targeted very precisely. And they are not sure the equipment they have in our only hospital in Cornwall can handle that?

They are going to consult with all teams involved and if not he either cannot have Radiotherapy - the best option for his type of cancer, or he is going to have to have it outside of Cornwall.

This could be problematic as once it starts it is every day for some weeks, and the nearest hospital with other equipment is a 2.5 hour drive away and truly even Barry could not drive that far and back every day while having this. He would have to stay somewhere, and we just do not have the money for this.

And it could be they can't do it there, so it could be London.
That is a 6 hour drive.
But that could be a lot better as at least my sister lives there and could put him up.

They are consulting the various teams about this and that will take a few f weeks before we know.

But the other reason is that they are worried that Barry is on ARVs.

That according to their - outdated I feel - information, on some ARVs, but also those with HIV cannot have radiotherapy?

Anyone know anything abut this?

BUT!!!!! I know that this only applied to the older drugs and just due to some research that was not proved and that you cannot have radiotherapy when HIV+ has long been disproved??

I know because we had this fight before.

They said the same thing a few years ago when we fought to get him Brachytherapy

The same happened then!!!!

They said he could not have this. Yet it was then the best treatment for how his cancer was then. But we had to fight for it, because the local team thought it was not possible for those HIV+ and on ARVs.

I had to fight for him to get this.

I had to find more up to date research and post it to them, get my niece who is a consultant in London to write to them, and get them to consult with a London HIV specialist.

I am very upset we are going thought this yet again!!!

They did say that they do now know now that the ban on Radiotherapy only applied to much older drugs.

But Barry is now on Odefsey. That apparently they had never heard of???
And have no information re that and any type of radiotherapy!!

I am pretty sure that there is no problem with that!!

As it s exactly the same as Complera/Eviplera. Except it contains the newer Tenofovir and that is fine with Radotherapy.

And Odefsey the drug Rilpivirine is in derivation for the same family as the Efavirenz in Atripla he was on when he had the Brachytherapy.

I guess I should be pleased that if they do not know they are doing their research?

But all this will take time. Were told could be as much as 8 weeks!!!

And at least, unlike last time, they are researching it, rather than just telling us as they did 5 years ago or so, that Barry just had to have his prostate removed and be on hormones for the rest of his life.

But honestly I feel they should know this stuff.
Before he attended his appointment??

They say they have hardly ever treated anyone for this cancer here that also has HIV and is on ARVs???

I find that hard to believe??


So it is now a waiting game for us.

Could now be many weeks before he starts any other treatment, except for hormone treatment, if he does

And every week counts. ...................while they consult and educate themselves.

Otherwise his only option is to be on hormone treatment for the rest of his life, like his dad and his brother was.

His dad died of it. So did his brother not long ago . It does not work forever.

And hormone treatment is not good. Especially if for the rest of your life

It is true that when originally diagnosed, if he had agreed then to have his prostate out, this may not have been now occurring.

But It could have, as his cancer is very aggressive and so could have already been outside the prostate but too small then to small to detect,
And the scans he has had recently did not exist then.

But ..............

He would have been lucky to escape urinary incontinence, like his brother and his dad.
But more of a concern for him, almost certain impotence.

Maybe we are shallow. But have a good sex life and it is very important to us both.

But I would have forgone this if that was the only option.

However Barry said he would rather not have it and would take his chances. Have have a few years, with me and some normality, and then die.

And actually if you knew Barry?? He is not at all an emotional person ( I am but he is NOT and not at all)

He s not given to saying anything he does not truly mean.

He meant it.
But due to me basically, we found he could have Brachytherapy and not then prostate removal and then hormones.

It was not a hard procedure to have and it gave him ( us) a few years
It is too late now for a Prostatectomy as it has spread.

But hormone therapy as he is on now also can also make you impotent - more than 85% + and grow breasts, and feel ill and emotional etc.

He has some of that - breasts expanding, irritability and feels unwell - And he has shingles right now that we have no idea if related.

And he is so hating it and so hope this is only until he can have Radiotherapy.

I will fight for him to get what he feels he needs.

Wednesday, 28 February 2018

It's not all about me.

Barry has prostate cancer. It was in remission but now it's spread.

He is on hormone treatment and starts radiotherapy very soon.

It's not about me. I don't have cancer.
But he does.

And I have absolutely no one to talk to or who understands.
But mostly I have no one.
He does not either.


That above was a cry from the heart when feeling down last night. I am better this morning.

I'm really feeling down at the moment and it is difficult as it not 'all about me' or about me at all and I have to support my husband. But my problem is I have no one to support me. Not in person. I only have people online.

12 years or so ago I had many actual friends, who lived nearby. Or so I though.

Now I have none.

No one even to talk too from one week to the next in person, except Barry, and he is trying just to cope so I cannot expect support from him, understandably.

And I guess it is selfish to think about me at a time like this for Barry.

His prostate cancer was in remission for some years but has returned and is now outside the prostate
He has been on hormone treatment - daily tablets and weekly injections - for over a month, to shrink the nodules before radiotherapy and perhaps chemo..

And has shingles is irritable - at least he has not had uncontrollable bouts of crying and emotion that we were told was a possible side effect - and is not feeling well.

Today he is off to the treatment center to discuss the radiotherapy which will begin in the next few days.

I am so scared I will loose him.
And he has been my rock for so many years and I am scared I can't be his rock now.
But I have to be. It is not me that has cancer.

Sunday, 25 February 2018

I think may have been once a modern day slave. In the 1970s in Cornwall anyway.

My story of my time in Penzance, Cornwall, so many years ago.

Don't bother to read it unless you are interested and have time. As it is far too long.
I just wrote it for me ......lest I forget. As now I forget so much


I found on Facebook pictures of the Western hotel in Penzance, now long demolished,

I worked there!!
I cannot remember the exact time or year. But it was between 1969 and 1975. Maybe as late as 1973/74?

But all those years it is mostly a total blur as to dates.

I do know was in a total state mentally during those years and I was drifting and often homeless on the streets, often in London.  Or living in squats or doing seasonal work which provided accommodation and food. In between going back to mum briefly when I was desperate and had nowhere else to go. And in early 1970s doing a course in Pattern Cutting and Design at the LCOF - London Collage of fashion.

Then subsequent work in very dire conditions in factories – mostly in the rag trade after I qualified But as that was very dire so also in boutiques………which was only marginally better!

You would think boutiques in central London would be good money at least?
Maybe for some, but not really then for the likes of me??

As I depended entirely on commission on what I sold to make enough money to live on.
We only had a very small basic wage in the places I worked anyway, not even enough to get you to work daily if you lived more than a walk, nor enough to feed yourself.

So at one point I even moved to live in a cupboard so I could walk to work when I worked in Kensington Church Street - and mostly I did not earn much in commission. As I only got the jobs because I looked very good then and I looked the part.
But then I could never be bothered to suck up to anyone just because they were buying something!!!
So did often did not get the commission enough and so I could not afford to live

So a lot of the time then I drifted in and out of work and in between I was a homeless drifter. And when you live like this, life can be a blur.......

And while I cannot remember exactly the year somehow, at some point, I came to work at the Western in Penzance

I found London exciting but so very tiring and could not live with or near my dad for long from about when I was 15, and consequently was sectioned in Park Prewett asylum

As it was then, and nearly died due to the abuse I suffered there.
I had there what was then called DST -Deep Sleep Treatment. An artificially induced coma
Now long banned almost everywhere. And in some countries killed young people like me.

I feel so very lucky to have survived this. Relatively in tact? But it did take its toil on me Even now. Which is still very sad, for me anyway.

I often drifted wherever I could and often took seasonal/holiday jobs abroad and in the UK. As long as they provided, food and accommodation.

And the Western in Penzance was, briefly, was one of them.

And I cannot remember the exact year or the time? But I think I came down in April and may have been 73/4 and it was supposed to be a job that lasted the season.

But I can so very clearly remember the details. Sad fact of getting older that this can happen. I remember vividly the  details of years ago, although not the dates and cannot always remember what I had for breakfast!!

Or this is my situation and this is very worrying also as my mum had dementia, as did others in our family. But theirs started a lot older than I now am. I am only 65.

I do however remember clearly that I got the job through a seasonal job publication around at the time and then by letter and then by phone in a telephone booth. As I always did then.
There was no internet or mobile phones then so that was how you did it. I always preferred seasonal jobs abroad and had a couple of such jobs during those years. I will maybe write more about those too, one day?

But then I was homeless and totally broke at the time, fancied change, did not want to go back to my parents and my brother had bought a cottage in Mousehole near Penzance so I figured if I got desperate I could always go there? Which indeed I did for a short while later.

I got the job and used the last of my money to get the train down rather than hitching, as I was very tired and cold, and hungry and expecting to be fed when I got there. I was not!
I was expected to work the season.

I got a room and was supposed to get meals?
At the time a place to sleep and to be fed was good enough for me.
And any money was a bonus. I was to get a small wage. I did not ask what that would be? I was just happy if I had a bed and was to be fed. But I guess did expect about £6 to £7 a week, but I stupidity did not ask what I would earn?

At the time I just wanted to get out of London and go where there was sea and nature and where I felt at home

The Western then was run by a family that I could see even then, were struggling to hold it together. And were not.
It closed not long afterward, and I am told was later demolished? Must have been a tragedy for them, as I could see they were on their uppers even then. They had a daughter and I think a younger son and I could see they were so stressed and struggling to keep it together. I wonder what happened to them?

I was a general dogsbody. I cleaned the guest rooms – made beds etc - cleaned the bar and the public areas………. on my own, I cannot remember having anyone helping me with this?
Except with the food as the owners did the food and I only helped with that.

I helped to prepare breakfasts and other meals.
But they locked the food up afterwards and never offered me any food???

In the afternoon I ran the outside ice cream booth when the owners had an afternoon kip/rest before starting again doing evening meals and running the bars. As it was a big hotel and there was more than one bar. But I did not get a rest and I too helped with the evening means and helped run the bars and I had been up often earlier than them. Cleaning the rooms and the bars

Before they went for their rest they counted the ice creams and lollies in. And then I could not leave, not even to go to the toilet, until they got up and counted them out, I guess to stop me eating them?

But even though I am terrible at money and maths I was sooooo hungry and hunger and survival can sharpen your mind I must admit as I was so hungry I sometimes managed to fiddled the money and had an ice cream or ice lolly or two and sometimes customers bought me one. If I talked to them entertainingly and answered their inquiries about the area, sometimes I struck lucky. Some even gave me a tip!!

But I am so sorry to any punters I may have served there as many times as I also carefully opened the top of ice creams and lollies and had a lick or more, then carefully closed the cardboard so it was not noticed.

I was sooo damn hungry! I am sorry now. But survival is survival.

I also worked behind the bar, and the folk club bar. I think may have been underage to do that, maybe not if it was 1974? but no one asked anyway - was up by 6am and worked until they did not need me anymore.

But no one remembered to feed me???
Or offer me any food at all!!

The bedroom I had was by default OK. In fact a large room to myself which was more than I was then used to. A double bed,  but damp, and just a blanket, I used my sleeping bag I had brought with me. It was  not good enough for hotel guests as in the ground floor wing or basement,  but OK for me and as I was about their only employee at the time I had it all to myself. But had nothing to eat and worked very long hours.

And for over 14 days I could not buy anything for myself as I’d used the last of my money on the train and they did not pay me anything for over two weeks.

In those days it was always what was called ‘a week in hand’.

You were supposed to get that week back when you left.
I never got it back when I left. But to be fair I did not ask. I just legged it one night when I had had finally had enough.

Once I remember vividly I was so very hungry that while helping to make the breakfasts I nibbled on something off the preparation table, some bread perhaps? The owner’s wife was so very angry…. hygiene she said?

But what about my starvation, I thought??

She was furious. And I was such a dork then it never occurred to me to say she had promised me my meals and I had not yet even had one??
I cannot ever remember getting any meal there, not once?

In fact, I fainted about 10 days into the job while vacuuming and cleaning the bar.
And that was not me in those days. As then I was so very physically healthy.

It did scare the owners though as I went down like a lead balloon and was afterwards so groggy.
So they did send me to the local doctor. He prescribed me an iron tonic. But no one thought to ask when I had last eaten?? .......I had not for at least a week or more??

There was no minimum wage then and as long as I got accommodation and food, and a small wage, that was usually then good enough for me.

Well it was as long as I got fed. But I did not get fed there!!
When I got my wage at the end of two weeks, it was under £4. Which even for then was quite dire. OK if I had had good meals it would have been OK, but I did not. So out of my wage I from then on had to try to buy enough food out, to survive on.

Perhaps this cannot be classified exactly as slavery?  But I de to this I therefor know and for sure that modern slavery has to be so very real. As sadly I got pretty close to it myself then.  As that was what it felt like. And if it happened then, I know it is happening now.
And that is not the only incidence of it I went through at that time.
It is very unlikely that a white, young women who is a UK citizen would experience this now?
But there are so many other young women and men, from other countries that may.

The one saving thing of working here is they had an amazing folk/music club in the hotel once a week. On a Friday I think? And not the folk clubs as is now.

This was a very big thing People came from miles around. And it was fun and was happening.

Where I often worked the bar – I doubt I was of age to do this, but they never asked my age and the owners did not like the music so left it to me and at times their daughter, also too young - and I saw so many.

So many, some local, Barbara Wootton, John The Fish ( real name John Langford who was once a friend on Facebook but seems to have removed himself for my friends list?) Mike Silver, Tell Mann. And some that became more famous like Clive Palmer with and without the Incredible string band, Wizz Jones and  ( l was later in that year was invited round to Ralph McTells house as he lived near and you may not get it but as he had a number one record out at the time, played all the time on the radio then – Streets of London - that was amazing for me to be invited to his house. I was after all a very young and then very impressionable young woman.

Anyone remember the folk club there? It was while this existed I worked there. Yet it is not mentioned in any page I can find about the history of folk in Cornwall. The Railway which I also went to is but not the folk club in the Western

Except one post on one group from someone that mentions it in passing?? Yet the folk club there was such a very big thing then.

But the folk club did not help me to eat!!
So one night I packed up my stuff and in desperation I phoned my brother who had a cottage in Mousehole and I asked to stay there.

He said yes.
And I went there. And by coincidence a boyfriend at the time, and indeed then the love of my life and was for many years, before then and actually after.................. Richard was coming down to Cornwall for a holiday and I invited him to stay in my brothers cottage with me. And he did.

We had such a lovely two weeks or so there. I will never forget it,.
It was such a lovey time for me. I do now so realise now I was just available and was just there.

Richard left, he was only on holiday after all but I was left with the consequences.
As my brother got complaints from the lady who lived upstairs.!

A sitting tenant as my brother had bought her part of the cottage too but she had tenancy of it for life. He honored that totally.

But apparently even though so deaf that she had her telly up full blast, which bothered us but we would never complain, she could tell that I had a visitor? And that we were having sex?

Well indeed as I went up there and introduced myself and Richard to her – and no she could not hear any details.Yes we were but no way could she hear it or be bothered by us.

But she objected to the fact that I had a man staying with me and I was not married to him? And she was apparently appalled???
She did not say this to me but phoned my brother and said it to him??

And my brother basically chucked me out. Thank you, a lot, John!

He is now dead as he committed suicide and I guess when that happens, even years later, you are not supposed to say how those now dead but once very much alive ….. once pissed you right off?
But my brother John did…then.
And my dad used money he did not really have,  to help build my brother’s house just a bit before.

Yet the only time I ever asked him for anything, just to stay in his little cottage in Mousehole, just a little bit longer. He said no!

So I was on the streets. Yet again!!

Ironic given the Ralph McTell, Streets of London,  was basically a backdrop to everything then and I had come to Cornwall to escape being homeless on the streets of London??
And this song was on every radio, played in every pub??!!

But that was how it was then. To be with someone you were not married to, was then just not on.

I was then again homeless, and now on the streets of Penzance!!!!
There was no song about that  was there.

And Ralph McTell then lived in Penzance!!
He must have had his eyes closed to the homelessness all around him as I was only one of very many.
(Homelessness is not at all new. And not ever just confined to big cities)

However I found, from the many others then also then on the streets in Penzance.
That you could claim what was then known as tramps allowance. If you reported, in person with all your belongings, to the unemployment office daily.

You could claim it. I think it was about 52p a day?
Not much? But it was a total savor for me at that time and for many others.

Even if I had wanted to go back to my parents, or back to London, and I did not. I had no money to do so anyway and while I could have hitched the 250 miles, for me to be near my dad was so destructive for me then and did not know if I would be welcomed in London by anyone?

So I stuck it out. Slept in alley ways on the beach etc in PZ and a few times in the train carriages that were then left over night in the sidings past Penzance. At Longrock.
Once or twice we struck it so lucky. As a first class and buffet car was left in the sidings…. such luxury to sleep in.
Once we really struck it good as got a buffet car that had food and booze in it!!

I did not drink then. But that night I sure did.
Whiskey, gin, wine, the lot. A very fun night I will never forget. Plus the dope and other drugs etc.

I then saw an advert posted for workers for what was then called Kenegie Country Club in Gulval.
They needed staff. Now it is

I just walked up to there with all my belongings in my rucksack and turned up on their door and they took me on.
They put me up in a tiny caravan that had 5 of us sleeping in it, including the cook ……who was a total anorexic, apparently unusual for a guy but he was? Nothing passed his lips but milk and sometimes beer. He was skeletal.

Yet he was in charge to cook all the food there what was then for at least 70 to 100+ people a day?? Yet he did not ever eat himself ?

But it was a bed. And I got food!!!!!! To be fed was very important to most of us then.
And thankfully they were very careful to offer their staff three meals a day.

We got toast and butter and jam, in the morning, after we had served the breakfasts, a small meal of left overs after we had done the lunch.

And then we even had a couple of hours off then and then came back for the evening meals serving and for the entertainment after that was finished at about 10 to 11 pm we could again have a meal of whatever was left over.
And they paid me £7 a week. Such a huge improvement!!
Well mostly, as they would deduct from that if they saw anything wrong and I was not good at serving people. But they were fair and at least I had food and a bed??

They were very good employers for the time

In fact I got demoted to kitchen porter, even though that was then considered a man’s job.
As I was so very clumsy. I have dyspraxia. Which apparently goes hand in hand with dyslexia, which I have a little but also dicalculi, which I have a lot.

And t serve it was a juggle of silver service for the veg and you had to carry the starters - mainly then soup – and the mains around to the tables on a sort of 5 tire wire carrier that you had to balance.
I could not do it!!

Sadly, one night I tripped and dumped the soup in the owners mothers lap!!!
At least they did not turn me back out into the streets......... They made me a kitchen porter which I in fact preferred even though my wage dropped. I then got about £5 a week.

I worked with the man that fed the gigantic dishwasher who, I guess, had Tourette's?

Only we did not know this name for it then?
He punctuated every rack of plates or cups or whatever he loaded, with a stream of profound swearing. That even though I had lived on the streets I had not until then heard quite such profanity?

And even when off duty he had what would now be known as ticks and constantly swearing etc.
But he was a very lovely guy. Who came with us all even to the Barn and other clubs.
One of my jobs as a kitchen porter there was to take the remains of breakfast out to feed to the pigs they then kept.
Even then I knew that feeding bacon to pigs was somehow so very wrong?

But we had some fun. Somehow.
We somehow fitted in going to the Barn club and other music venues around this end of Cornwall after we had finished work. We used to also sneak into the outdoor pool a night – they have an indoor pool now. But then but then only an outdoor one – even when really cold we would often swim at night.

But some tragedies too.
A suicide, of a fellow worker that I have to say sadly we hardly noticed. So very quiet, but now will never will forget...........

And a fellow worker, a receptionist, that we had thought that although quite thin, though had a big tummy.
Suddenly gave birth!!! In front of us pretty much basically. Even still she did not accept what had happened?

I then left there and got a job at the Wimpy bar in Penzance.
Cannot exactly remember now why I left, but guessing I got sacked for being too bolshy and not towing the line?

I had nowhere to live so even though autumn was coming on I went and bought a small tent and put it on Eastern Green. That was then basically a farmers field and also a camp site in the height of the summer but he let a few stay on after the main season.
But I was not alone in leaving. It sort of comes back to me as I write

I left with another woman. She also had a got a job in town. She left before me though.
I only had a thin ridge tent but my life and sanity was saved by a couple camping next to me, that later would probably be called ‘new age travelers’?

But then there was no name for them and how they chose to live. They had a young child and large van that I think they slept in and a big green ex army tent, with sofas and a wood burner...................

So I lived in my very cold tent and worked at the Wimpy bar in Penzance and spent evenings warm in the green tent next door. But the Wimpy paid me a decent wage for the time and fed me.

I used to wash my knickers and other essentials in the sea. Down om the shore, next to the road, opposite what was once Eastern Green, there is a sort of bridge with two arches?

When I drive by now I still can see them. It always brings a tear and indeed a joy to my eye. But also sad as no one will ever understand why, now. So I never bother to explain.

I used to sit under there and wash my knickers and sometimes my body when living in a tent a Eastern Green. The camp site then had toilets but no real washing facilities and no laundrey facilities

And then there was sewage flouting around in the sea there - including turds and tampons etc - so I used the fresh water stream that flowed under the bridge for the actual washing.
Actually it is a fond memory and I love the place I even once painted a picture of me in that place washing my pants!! Long gone now.

I was very well known locally when I later worked at the Wimpy in Penzance. Even then I would often have coloured hair and like I do now I wore a lot of silver rings. This was very unusual then.

I did leave, probably when it got too cold in my tent or I had had enough of living like that.
And went back to London to sort myself out,  (I was lucky to get into the Henderson Therapeutic Community, 

Which I feel if the Henderson did not save my life, it did save my sanity and taught me how to live in this world

And I then went  then to get educated and qualified and the rest is history .
Although I never thought I would come back to Cornwall - a whole other story why I did - I have now lived here again since 1985

And I will never forget that, when I was back living in London, for some years, at a concert a guy came up to me and said I remember you, you served me in the Wimpy in Penzance!!!

What is the chance of that?