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Fred | | Person with diabetesBorn in Newbury in 1942. Diagnosed Type 1 in Reading in 1956
Overview: Fred`s family was poor and food was rationed in his early years: he remembers that a Mars bar was cut into slices to last 4 or 5 days! After diagnosis, he was told that `I had to control the diabetes rather than the diabetes control me` and has tried to follow that advice ever since. He lost his sight in 1978 and his second wife left him because she couldn`t cope. He began a successful business making garden furniture and now lives with his third wife, who is also blind. | [View Full Interview] |
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| (1) I was born in 1942, and lived in the country and quite a rural area
| (1) I
was born in 1942, and lived in the country, and quite a rural area. My mother
didn‘t actually work, just brought the family up. And I was the youngest
of three; I had a brother and a sister about twenty years older than me, and
so I was the real baby. In fact, my brother was away fighting in the war
when I was born, and I was actually three before he came home, before he realised
he‘d even got a brother. And my father worked for the local council, and
suffered rather badly with rheumatoid arthritis so restricted his movement
a little bit, so things like playing games of football and cricket weren‘t
really on. In fact, I used to play football with my mother more than anything.
And I was the one of about seven children actually born within about a four
week period all in the same village, and only two of us were actually born
on the same day. But it was quite interesting - the poor midwife must have
been tearing her hair out riding round the village on her bicycle, as they
did in those days, not knowing which one to go to next!
What did your father do for the
local council?
He, actually he did driving and
various other sort of jobs, you know, whatever there was to do - working on
roads more than anything. They used to do these, well, sort of large contracts,
you know, for building roads and that sort of thing, yeah. And his actual
trade, I suppose, was laying kerbs and footpaths and that sort of thing.
So would you say you were reasonably
well-off? How did you feel?
No, I suppose as a lot of these
pop singers say, I came from a poor background, but we managed. And, of course,
as I say, the war was still on when I was born, so things were on ration and
very difficult to come by. And we really relied on the local shop for our
main shopping, although there was a bus that went into the local town on a
Thursday, which my mother used to catch to go and get the main shop, and things
like fresh meat and fish and that sort of thing. But things like Mars bars,
we were restricted
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| | (2) in
what we had. In fact, I can remember, if I was treated to a Mars bar on a
Saturday, it was cut into slices and I had one slice per day, and that would
last for four or five days.
Where did you go to school?
I went to the village school,
as did most of the children from my end, although there were two village schools
fairly close together, and my particular village was sort of split half and
half, I suppose. And then at the age of eleven, I left and went to the local
secondary modern school in the town, which meant a journey of about five miles
by bus. And that‘s where I did my next five years. And then, having left
school, I went and did a two year, one day a week, day release course at the
local college.
Before we get on to leaving school,
we ought to come to your diagnosis. How did that come about?
I was diagnosed as being diabetic
when I was thirteen. This came about following an incident when we were on
school holidays, the Whitsun holidays. The local pub in the village used
to let us play in a paddock, which was next door to the pub, and there used
to be, I suppose, seven or eight of us congregate in this paddock. And we
were actually playing our form of hockey one day, which involved a tennis
ball and some sticks, and I had the misfortune to actually fall over, and
a friend of mine took a swipe at this tennis ball with his stick and actually
hit me between the legs. And nothing sort of happened at the time, apart
from me screaming. I suppose it was probably a couple of weeks later when
I started to drink a lot of water, orange juice, lemonade; just couldn‘t drink
enough. My mum got a bit suspicious about the problem I was having and called
in the local doctor, and it was then suggested that I might be suffering from
diabetes. So I was duly whipped off to the hospital in a town about eighteen
miles from where I lived, and that is where they confirmed that I‘d actually
got diabetes.
Do you connect that diagnosis
with the accident?
For a long time we did, although
fairly recently I was talking to a consultant in one of the large hospitals
that specialise in diabetes, and he was suggesting that perhaps that may have
been part of the cause, but he was fairly certain that I may well have got
diabetes later in life, had it not occurred at that time.
Had you got any diabetes in the
family?
Not that I know of. Certainly
there were suggestions made that there possibly could have been somebody with
diabetes, but, of course, going back to that time then, it wasn‘t such a popular
disease, and I don‘t think people probably knew, if somebody had diabetes,
that that was what it actually was. But certainly I‘ve no knowledge of anybody
being diabetic.
You said that your mother was
a bit suspicious when you began to drink so much. Do you think she actually
suspected it was diabetes?
My mother kept a book called
the "Home Doctor" in the book shelf, and I think she may well have
looked through there to see if there was anything that related to what was
happening to me, and I suspect that she had a rough idea of what the problem
was.
|
| | (3) Tell
me about the hospital you went to.
Well, I went off to the hospital,
which was actually the Prospect Park
Hospital in Reading,
and arrived there at about ten o‘clock
at night. And I was put into the first bed just inside the ward, and in latter
years I‘ve actually learned that the first bed inside the ward is usually
for people who are not likely to survive. But at that time, being thirteen,
I wasn‘t quite sure where I was really, I suppose, as they‘d only just sort
of put the light on over the bed, the rest of the ward was in darkness. And
straight away they‘d started to give me treatments and carry out tests on
urine, and suggested that I might have to have some insulin, which would be
given as an injection. And it was only the following morning when I came
to, that I realised that on the wall at the side of my bed was a display cabinet,
and in that cabinet were various syringes and pieces of equipment, the like
of which I‘d never seen before and looked very, very scary. But on talking
to one of the nurses, I later found out that all the items in this cabinet
were of an historic interest and were things that had been used many, many
years before, and I certainly wouldn‘t be using one of those syringes, which
were absolutely massive. I was looked after very well really because I was
the youngest in the ward, and a lot of the men sort of made friends and tried
to put me at ease, and the people that came and took the trolley around for
drinks and things used to get me out of bed and have them helping and all
the rest of it. And I was there for actually about two weeks, and, of course,
when I came out, I came out armed with glass syringes and needles and the
old Clinitest equipment for testing urine, and it was all a new experience,
and...
Can you remember how much you
were told about diabetes in the hospital?
I was, I suppose, told that it
would remain with me for the rest of my life. They certainly didn‘t tell
me about some of the problems that I would incur during the latter years of
my life, like blindness and the effect that diabetes would have on toes and
feet and all that sort of thing. I was just told that I had to control the
diabetes rather than the diabetes control me, and
|
| | (4) that
I‘d have to be careful what I ate and I would be put on a diet, but as I grew
then this diet would change to take my, you know, growth into account.
Can you remember anything about
the diet that you were put on?
The diet itself, I can remember
being told that I would be allowed two hen-sized potatoes to have with my
main meal, and that I could have things like cream crackers and a bit of cheese
as a mid morning break, or the luxury of a Digestive biscuit even, and that
I would need to carry sugar knobs around with me just in case I needed to
have something fairly quickly. And so I can remember having a little round
tin, which I think used to hold something like Zubes, to carry these sugar
knobs in. And in fact, when I went back to school, I was given permission
that if I needed to eat something during class then I could have these sugar
knobs if I needed them.
How were you trained to do injections
in the hospital?
One of the nurses came along
with the syringes and the needles. Of course, in those days it was glass
syringes that had to be sterilised, as did the needles. And the needles then
were quite long needles, well in excess of an inch, and they used to come
in a little tin with like a little copper strip down the centre of them, which
you pulled out before using the needle. And I was actually shown how to wrap
the syringe in a cloth and put it into a little saucepan and boil it up, and
then let it cool down and put the syringe and needles into a glass jar with
surgical spirit. And it stayed in this jar - in fact, it was an old glass
butter dish that I used at home that we kept especially for the purpose -
and it stayed in there through the night until I needed the injection, which
I did each morning.
Can you remember what insulin
you were on and how often?
Yes, the insulin was the old
Zinc Lente insulin. I started on the twenty unit insulin, and I took, to
start with, round about fifteen units of that, which you would draw up into
the glass syringe using one needle, and then you would change that needle
to inject into the leg. And you tried to sort of move round the leg so you
weren‘t injecting in the same spot all the time. And these injections I did
each morning before I had my breakfast.
Was the leg the only site that
was suggested?
In fact yes, the leg was, because
it was the only part that you could reach quite easily, because when the syringes
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| | (5) were
extended, it was difficult to hold it against your arm because, as I say,
the needles were quite long, and then the stem of the syringe, it was a job
to get your finger to the end to actually push the plunger in. So really
it was just a case of injecting into the legs, the top part of the legs, and
then to rub the skin afterwards to disperse the insulin, to stop it bulging
up underneath. Occasionally you‘d hit a little vein or something and you‘d
get a little bit of blood come out, but most of the time it was okay. And,
of course, you always had a bit of cotton wool at hand with surgical spirit
on - just wipe the leg before and afterwards.
Can you remember what training
you got in testing your blood sugars?
Yes, to actually test your urine,
you were given a little Bakelite holder with a Clinitest kit in it, which
consisted of a little test tube, a little tube like an eye dropper with a
little rubber ball on the end that you squeezed, and a bottle of Clinitest
tablets. And what you did, you passed water into a container, and then drew
up, I think it was five drops of urine to ten drops of water into this test
tube, and then dropped a Clinitest tablet in, and that used to fizz up and
it would actually change colour. And you were always looking for the pale
blue colour, because that meant that there was no glucose in your urine, but
if it went to bright orange then that was classed as two percent, which was
quite high for the level itself. Sometimes you could get away with it being
pale green, which meant that there was just a trace. But the other thing
we had to look for was the fact that the Clinitest tablets, if they started
to get quite a bright blue flaky appearance to them then they had to be thrown
away and you‘d open a new bottle.
Were your parents given much
information about diabetes?
My mother, I suppose, was given
a lot of information on what to with regard to sterilising my syringe and
everything, because when I first got it, she actually used to do the sterilising
in a little open saucepan. My father, I suppose, yes, he took an interest,
but as my mum used to do all the sort of cooking and buying of the food, she
was keen to know more about it because of what to get, and what I should eat
and what I shouldn‘t eat.
|
| | (6) And
in fact, when it came to making things like rhubarb pie or apple pie, she
would actually sweeten these with saccharin rather than sugar, so it meant
that I could actually have rhubarb tart and custard, which was one of the
pleasures of life.
What were the reactions of the
members of your family to your diagnosis?
Diabetes then was quite a rare
disease, so, of course, they were a little bit concerned to start with, but
then they just accepted that it was something I was going to have to live
with for the rest of my life, and we just sort of basically got on with it.
If I went to relatives to have a meal then I had to be a bit careful in what
I was given to eat. And sometimes people couldn‘t quite understand that I
couldn‘t have the apple pie because it had been sweetened with sugar and that
I would just have an apple or a banana or something, although in this day
and age, bananas are now regarded as quite a sweet fruit, and should only
be eaten if one is tending to go hypo. But generally, once we‘d started to
educate people on what I could and couldn‘t have, then life became easier.
Did you weigh food?
Yes, we were given a pair of
scales from the hospital - funny little things, but in the end, once mum had
got used to what I could eat and what I couldn‘t eat, we didn‘t bother weighing
the food. You could sort of tell, really, just by looking roughly that a
spoonful of something was going to be about the same as weighing it, and so
we tended, in the end, not to bother with the scales.
How did you manage at school?
When I was at school, fortunately
the school dinners were quite good as far as that goes. There were certain
puddings that I couldn‘t eat, but basically what we did was to balance my
insulin so that I could actually have some of the puddings, otherwise it meant
that I could possibly go all day and not have any basic sugar content at all.
And particularly if we‘d been playing games or been in the gym, it was surprising
how much energy you could burn off, and so certainly by lunchtime, sometimes
I was ready for having something a little bit sweet, just to push my sugar
level up a bit.
When you say
|
| | (7) balance
your insulin, what did you do?
When they... I had to go to the
Royal Berks Hospital in Reading
quite regularly as an outpatient, and each time I went I had to take a record
of the amount of sugar in my urine, and they would carry out adjustments.
And as I grew older, of course, and started to eat more, then they would increase
my insulin. And eventually we sort of worked on a basic level that I would
take, something like twenty units, which seemed to be quite a good balance
then, and eating food at school wasn‘t too much of a problem. And, of course,
when I got home at night, I would have to check my urine level before having
had my tea, so that we knew just what I could and couldn‘t have for tea, sort
of thing.
But you didn‘t adjust your insulin
from day to day depending on how much exercise or food you were going to have?
No, we tended to stick to the
same amount of insulin each day. Occasionally, if it had been high the night
before, then I may increase it a couple of units the following morning, because
one got to be able to tell in the end whether your sugar level was high because
of the dryness in the mouth and the amount of urine that you passed, so that
gave an indication of whether your sugar was up and down.
And would the doctors have been
aware that you were adjusting it in that fashion and not sticking strictly
to the amounts?
The doctors gave you a little
bit of grace, because it was very difficult at that time to keep strictly
to that exact amount of insulin, and provided you didn‘t go over the top too
much, then it was, you know, advisable to try and stick to the same level.
The same being that if my blood sugar was really low in the morning, then
it would be silly to take the full amount of insulin to increase the risk
of going hypo. But we used to keep it fairly evenly balanced, yeah, it wasn‘t
too much of a problem. Like I said earlier, we were told to control it and
not it control you.
How did people at school react
to your diagnosis?
In fact, I don‘t think a lot
of the people at school, apart from my immediate friends, knew much about
it, because the school was an all-boys school, and I was one of about four
hundred. And people didn‘t really talk about diabetes, and a lot
|
| | (8) of
people didn‘t really know what it was. The teachers were aware of the situation,
because it might have been necessary for me at times to leave the classroom
to go to the toilet, the same as it would be to go and get some sugar from
my coat pocket or to get something to eat, you know, because I was likely
to go hypo, so they were aware of the situation. In fact, I can remember
in the assembly hall one day - there had been a problem in the school with
thefts from lockers and satchels and that sort of thing, that the headmaster
had given strict instructions that nobody but nobody was to leave the classroom
during a lesson to go to the toilets until this problem was sorted out. And
in fact, there was only one exception to that rule, and he would know who
he is without me telling him, and I said I just assumed that it was me that
they were talking about. But that is the only time that I think I was ever
given a special dispensation.
So you didn‘t stand out as being
different?
No, I didn‘t. Sometimes, if
my sugar was a little bit high, I began to feel a little bit lethargic, but
I would go and just sit down or go and get a drink of water or something,
you know. But people around me really didn‘t know what was going on. My
immediate friends knew that if I was having a problem and I was likely to
go hypo, then they would know exactly what to do, and that is either to get
me a sweet drink or to look for my sugar knobs or give me a sweet or something,
to bring my level back up.
How did you manage sport?
I took part in all sorts of sport:
football, athletics and one or two other games. I suppose I made sure my
sugar level was at reasonable heights if we were going to play a game of football,
because the last thing I wanted to do was to pass out on the playing field,
knowing that I‘d got nothing with me at that particular point that I could
quickly call on. So again, you just had to be sensible about it, and, you
know, do things accordingly so that you were okay.
Did you ever pass out at school?
No, I didn‘t. In fact, I never
had a
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| | (9) hypo
until, I suppose, five years ago was when I had the first one. But all through
school and all through my working life as such, no I‘d never had a hypo.
I‘d had periods where I needed to take something in to stop me going hypo,
but, I mean, again, you worked out exactly what would happen, like half a
Mars bar or some sweets or something, you know, or a sweet drink would rectify
the problem, so again you… You could actually tell when a hypo was going
to come on, so it gave you time to do something about it.
Did having diabetes affect your
academic progress?
No, I can‘t honestly say that
it did, no. Really, I suppose, it was fairly evenly balanced. The only time
that I would not be able to go to school was if I was going to the hospital
for a check-up, which, because of where I lived and the distance I had to
travel, basically meant all day travelling on buses and sitting around in
hospitals.
Tell me about leaving school.
When I actually left school it
was at Christmas just after my fifteenth birthday, and I actually took a job
in a furniture factory. My mother had said to me that to be a carpenter was
always a useful trade, and I suppose I developed an interest in wood and woodwork
that I went to a local furniture factory, and, in fact, the last thing I was
going to do was to learn how to make furniture. Like all boys of fifteen,
you start at the bottom, and I spent basically all the time cleaning drawers
which had been sprayed with the polish, and where the spray had actually got
inside the drawers, our job was to clean it all out with using a very coarse
sandpaper and a scraper. And I spent all day, with a team of two others,
doing that.
How did you feel about that?
I wasn‘t very happy. It was
a very boring job, and in the end I thought “well, this isn‘t going to get
me very far”, and I only stuck the job for six months. Because one of the
things, it meant leaving home at about seven and not getting home till about
seven, because the
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| | (10) factory
hours were eight till six, and then there was travelling time
before and after. And I was also finding it difficult, because by the time
I’d got home, just after seven, I was really feeling hungry, and having not
been able to get anything beforehand, then it made life a little bit difficult.
So after six months, I actually gave the job up and went to work in a little
shop, selling furniture and carpets and flooring and other bits and pieces
for the household.
How did your colleagues react
to your diabetes, both in the furniture factory and in the shop?
Well again, in the section that
I worked at in the furniture factory, the people that were around me were
aware of the situation. I just basically said to them that I was diabetic,
and if I was feeling unwell at all, that there were sugar knobs in my bag,
which hung on the peg within the actual workshop, and that, you know, they
had my permission to get them if I needed them and just to administer them
to me, or get me a hot, you know, a sweet drink or something. And so, apart
from that, nobody really bothered, you know. Fortunately, my brother-in-law
actually worked at the same factory, in a different part, but he was also
aware of the situation obviously, so that if there was a panic situation then
they could call on him as well, so. But life just jogged along normally really.
And what was it like working
in the shop?
Working in the shop was a bit
more difficult, because part of my job there was to go out on deliveries with
the van, and often we would be collecting or delivering fairly heavy furniture,
particularly some of the second hand furniture that we would take in as part
exchange. Some of the old wardrobes that we had to hump up and down stairs
could use up quite a bit of energy. And I can remember, on more than one
occasion, asking the driver to stop at a sweet shop, so that I could go and
get a bar of chocolate to push my blood sugar up before we got to the next
delivery. But again, everybody understood, and it was just accepted as the
norm. Sometimes, if I needed to have sugar knobs or chocolate, it was difficult
to just convince people how long it actually took to react. A lot of people
would think that as soon as you‘d swallow the sugar knob, it was instant -
that two seconds later you could be up and running again. They didn‘t realise
that you needed to sit down for a few minutes to actually give it time to
work.
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| | (11) What
did you do outside work?
Well, I suppose, still as a young
teenager, we still used to use the paddock next to the pub, and we played
football and cricket and various things, go for cycle rides and all that sort
of thing. And then as we got older, of course, most of my friends started
to actually use the pub itself, and this is where I had to be careful, because
of obviously drinking beer and drinks and that sort of thing. There weren‘t
the range of diet drinks that there are today, so I had to be very careful
what I consumed. But the one thing I did enjoy was playing darts, and in
fact I joined the local dart team and went on to spend four years as captain
of the dart team. And that, I suppose, was my main interest, because still
working in shops, although I‘d moved onto a department store by this time,
we always worked Saturdays, and whereas my friends would go off and play football
and cricket on a Saturday, I was always working, so I suppose darts became
my main interest.
Was it difficult to accept the
discipline of diabetes when you were a teenager?
Yes, it was, because everybody
was going off and doing things. And sometimes they‘d say "oh come on,
why don‘t you come here?", "why don‘t you try this?" or "why
don‘t you try that?", and it was difficult at times to explain to them
why I wasn‘t able to do something. If we were out on our bicycles and been
on a long ’cycle ride, sometimes we‘d get to a hill, you know, and they‘d
start pedalling off, and I‘d say "no, I‘m going to have to walk for a
minute", really just to sort of save a little bit of energy because I‘d
realised that my sugar was starting to drop a bit. And by walking up the
hill, I could slip a couple of sugar knobs into my mouth and crunch those,
and then be ready to go by the time we got to the top of the hill, but it...
Really, again, it was trying to control the diabetes and keep it that way,
and not let it interfere with what I was trying to do.
What reactions did you get from
girls to your diabetes?
When I first started going out
with a particular girl, who eventually became my wife, her parents were quite
sort of apprehensive about diabetes. In fact, they tried to end the relationship
because they thought that there would be complications later in life.
(12)
And we actually did go on to get engaged and get married, and unfortunately,
shortly after I‘d got married, my mother-in-law died within a couple of months
at quite a young age. And her father was a bit more understanding about it
and didn‘t seem to bother him too much, although if we went out to parties
or something then sometimes it was difficult knowing what to eat, because
they were catering for the majority rather than the minority, and sometimes
I‘d find that I could probably just have sandwiches but not have some of the
goodies.
How old were you when you got
married?
I was actually twenty six, and
still working in the department store. My wife then was a hairdresser and…
But we used to go off on holidays, and in fact, we bought a caravan which
we had down at, on the coast, near Weymouth for several years, and we used to go down there and stay.
And, of course, pack everything up to take with us, still the old glass syringes
and the disposable or the needles that you used a few times and then threw
away, but everything still had to be sterilised. In fact, I can remember
going down one weekend and getting up on a Sunday morning to do my injection,
suddenly realising that I hadn‘t taken any needles with me. I‘d got the syringe
and the insulin but nothing to connect it to my leg, sort of thing. Anyway,
I then spent the next two hours chasing round Weymouth
trying to find a chemist that could sell me some needles, and unfortunately,
of course, unlike today, people didn‘t open on a Sunday. And in the end we
had to pack up and come home, and so that was the end of the weekend, which
was a bit of a disappointment.
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| | (13) But
anyway, life continued, but unfortunately, when I was into my early thirties,
my marriage broke up, and we actually got divorced. And I was on my own for
a while then, which made living with the diabetes just a little bit more difficult,
because I was having to cater for myself. And eventually met another girl,
although we didn‘t get married for some time, and it was during that relationship
that I started to lose my sight, and again, this brought on other problems,
because some people can cope with blindness, some people can‘t. And at that
particular time, we were actually living in a flat in the town, and I was
quite restricted in what I was able to do. I‘d had to give up work, and at
this point I‘d actually left the department store and taken a completely different
job doing sign writing, and because of my failing sight, obviously that wasn‘t
going to be something that I could continue with. And spending all day in
the flat was like being a prisoner, and so eventually I managed to move out
of there into a house. And we got friendly with the people living next door,
and in fact my wife, who was finding it difficult to cope with my blindness
because she was quite a lot younger than me, got too friendly with one of
the neighbours’ friends, and eventually they went off. And again, I found
myself living on my own, with the added problems of being blind by this time,
and trying to cope with cooking and cleaning and trying to get on with life,
and also trying to get some sort of work organised.
How quickly did you lose your
sight?
I had a problem at the Christmas
of ‘77, and in fact I went back to work at the beginning of January ‘78, and
one of my eyes by this time was starting to give me problems. And, in fact,
I went to the doctor, who sent me to the optician, and he used to hold a clinic
at the local hospital, and said "look, I‘d like to see you at the hospital
this
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| | (14) afternoon,
can you come up there?", which I did. And eventually he examined my
eyes on a slit lamp and said "I want you to come to Reading
on Monday morning, I think we‘ve got a problem". And, in fact, I went
to see him at that following Monday at Reading,
and it was then that he started to sort of make noises about me losing my
sight. And within a very short period I‘d actually lost the sight in my left
eye completely and starting to get problems with my right eye, in as much
that I had to give up driving, and then eventually that deteriorated and left
me just with a little bit of guiding sight for really, I suppose, the whole
of ‘78.
You say that your second marriage
was affected by your blindness. Was your first marriage affected by your
diabetes in any way or not?
No, my first marriage… where
we used to go to the pub - I was still playing darts at this time - there
was a chap there who‘d been married and divorced and had got a little girl,
and I didn‘t realise that while I was playing darts, he was busily chatting
my wife up. And in the end they formed a relationship, and in fact she went
off with him and they eventually got married, and, as I say, I just carried
on with the rest of my life.
So we‘ve got to the point now
where you’re living on your own after your second marriage had ended and you
haven‘t got a job and you‘ve lost your sight. What year was this?
This was 1982. I‘d joined a
local blind club by this time and used to go to their meetings about once
a month, and whilst on one of those outings I actually met another girl who
had just lost her sight, and like me she was having problems with her marriage,
having a sighted husband and her going blind. She also had a boy of about
four. And we chatted on the coach about the problems with being blind, and
then it turned out that she‘d worked at a hostel where I had a niece that
also worked and they obviously knew each other. And eventually, although
she was living out in the country, she actually moved into the town where
I was living, into the next street. And time went on, and by this time I‘d
started making garden furniture - I‘d been able to set up a small business
at home with a workshop to make some wooden items. And it was while I was
doing this that she came to me one day and said could I make a sandpit for
her little boy to play in, but she wanted something with a lid on to keep
the sand clean, and leaves and all the muck and everything out, so we designed
something and actually made it. And so that, basically, was the start of
a relationship, because her husband by this time, although he was still living
at home, was actually having an affair with somebody and eventually they got
divorced, and she moved in with me. And the rest is history, as they say,
because we‘ve been married now for several years, and I now have a stepson
who is an IT manager at a school. And my wife works as an aromatherapist,
reflexologist, again from home, and so the two of us lead a life side by side.
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| | (15) How
did your furniture business come about?
Well, I went on a course down
at Reigate, which was workshops run by the RNIB then,
and it did some sort of training. It was very basic, in fact it was an old
retired cabinet maker that just taught me one or two rules and regulations
about woodwork and equipment, and showed me some of the things that blind
people were making and selling in the shop at that point. And one of the
things he showed me was a garden seat that had been made out of old pallet
wood, and to be quite honest with you, I wasn‘t too impressed with it, and
I thought, well, if I couldn‘t do better than that then I wouldn‘t bother,
quite honestly. So I came away with one or two ideas, and from that started
to produce things like nest boxes and bird tables. Then one day somebody
asked me to make them a garden seat, and I thought, well, this is the opportunity
to have a go at doing something a little bit larger. So I produced this seat
- it was actually for an old people’s home - and they seemed to like it because
they ordered a second one. Then somebody visiting the home one day saw it
and wanted to know where they got it from, and promptly came round and said
"we‘ve seen the seat that you made, can you make us one?", and so
that really is how the business got going.
In what ways were your seats
better than the pallet wood one on the course?
The fact that I was using what
they call prepared timber - it‘s a nice smooth timber, and that it was screwed
and glued together and not just nailed, and so it was quite a rigid construction.
Really, going back to my beginnings of my working life, working in the furniture
industry, both making and selling furniture, gave me a good idea into background
as far as proportional sizes were concerned, and this I find to be very useful
now, because I‘ve gone on, obviously, to make things like picnic benches,
rabbit hutches, dovecotes, chicken houses, all manner of things really for
the garden.
Have you managed to make a living
from this?
Yes, I have. I shall never be
a millionaire, but then job satisfaction comes into it and the fact that I‘ve
been able to achieve something. We exhibit at local shows once or twice a
year, which is my main
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window, and it‘s surprising the things that I‘ve got involved with just through
actually being blind. I suppose, in a way, it‘s taken me places that I wouldn‘t
have gone if I‘d been a sighted person.
For example?
I made the prize for the White
Cane Award for several years. This was an award that was given by Action
for Blind People, and they wanted to present something to local authorities
and organisations that had done something towards creating special gardens
for disabled people, and so this was the start of the sensory gardens coming
about. And to encourage local authorities, they decided to give a garden
seat as a prize, and so for several years I actually made that prize.
And you say it‘s taken you places
you might never have gone. What sort of places?
Well, I‘ve been involved in Chelsea
Flower Show. I went to several of the presentations of the seats when Action
for Blind People did the actual presentation to the local authority, and they
usually were scattered about the country, mostly in the Midlands.
And I‘ve also been involved in various radio and television programmes, and
in numerous nationwide magazines, as well as the local press, where people
have been interested in my work, and also through local authorities wanting
to know how to help blind people in a similar situation. Social services
would ring me up from different parts of the country and say "well, we‘ve
got this blind person whose interested in woodwork, what help can you give
us?", and that side of it I quite enjoy, because it means that I can
pass on some of things that I‘ve actually learnt as an encouragement to other
people.
How well do you think you were
treated by the health service around the time that you were losing your sight?
Well, unfortunately the laser
treatments were only just beginning to start and they were still basically
in the experimental stage, so my sight had deteriorated really too much for
them to be of any benefit to me. I went to Moorfields and I went to St Bart‘s
for some sort of diagnosis on
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was happening to my eyes, and in both cases I was told that there was nothing
that they could do; that I would be registered as a blind person, and unfortunately
that was going to be the way for the rest of my life.
Did they treat you sympathetically?
Yes, they did. In fact, one
lady that I met at Moorfields Eye Hospital wanted to see me at the Hammersmith,
because she knew somebody there that possibly might be able to help, although
she wasn‘t too sure about it. So I went across there and saw her and met
this professor, and unfortunately it only confirmed what her thoughts were,
that there was nothing that could be done. And with relationship to my diabetes,
she wanted me to go and see an old colleague of hers who was then working
at the Radcliffe Infirmary in Oxford and was very knowledgeable on diabetes, and
she thought I might benefit from going to see him, which I did. And in fact,
she wrote to him, and I had an appointment to see him within two weeks of
my visit to the Hammersmith Hospital.
When did you first come to the
Radcliffe?
It must have been getting towards
the end of 1978, and I had this appointment to go and see this chap, Mr Hockaday,
who was very knowledgeable person on diabetes and very well respected. And
he obviously again confirmed my sort of eye problems, and said “well, we‘ll
take a look at your diabetes and see if we can do anything there to stop anything
else happening”. I think his main concern was that I shouldn‘t start getting
problems with my kidneys. And so we changed over my insulin at that point,
and, of course, by this time the old disposable syringes had come in, and
I was having to have the local district nurse come in to do my injections,
because, as I mentioned, my wife was actually blind, and the difficulty was
drawing the insulin up. And so I found that quite restrictive, because it
meant that we couldn‘t actually go away on holiday, unless I could arrange
for somebody to do injections at the hotel or wherever we went. So, chatting
to them one day, they said that there was a new syringe coming on to the market,
but it was experimental at that point, called the NovoPen. And so they made
me an appointment to go to a separate clinic at the Radcliffe and be shown
how to use one of these new pens, which meant that there was a possibility
of becoming completely independent. And so we tried it out and I found that
I was able to use this pen, and so we changed over to this particular form,
and in fact I‘m still using it. At the same time, they also managed to obtain
a machine for testing my blood glucose level which actually talks, and so
they got me one of these machines, and again, we‘re still actually using it,
and that we find a great help. I think that must have been round about 1988,
‘89, something like that, yeah, but it‘s certainly made life much easier.
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| | (18) You
obviously benefited from the experimental stage of NovoPen. Did you take
part in any other experiments?
Yes, I did, but by accident really,
because I started to have a problem with my right eye, where it was getting
very, very painful, and it was decided that the eye wasn‘t draining properly.
So I went into the eye hospital in Oxford
and they tried treatment with drops, which didn‘t actually work, and in the
end they decided to operate and put a drainage tube into the eye. And this,
again, was experimental, and it had only been done once before in Bristol.
And so the two eye surgeons at Oxford were keen to see whether this would work
and asked my permission to actually video the operation so that they could
learn from their experiences, and this is what actually happened. And so
this operation was carried out and the tube was inserted, and for a while
it actually worked and eliminated the problem.
But only for a while?
Only for a while. In fact, I
went on in latter years to actually lose my right eye, and I‘ve now had an
artificial eye and lens in its place.
Can you remember when that eye
operation was, to insert the tube?
Yeah, it must have been round
about 1990, I suppose.
What other complications have
you had with diabetes?
Well, the only other one is my
feet really.
What‘s happened?
Well, back about four years ago,
I was actually working to get ready for a show, and had been kneeling down
putting a picnic bench together. And then I realised that I‘d got a problem
with one of my toes and that a little blister had formed on the top of the
toe. And I started going to the local hospital for treatment, and they decided
that I ought to go to the Radcliffe in Oxford to see just what the problem was, because
they weren‘t having any luck in treating this blister. And when I went there,
they discovered that it had actually turned to an ulcer, and despite the fact
that I was having regular treatment from the
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nurses coming in to dress it, I‘d actually got MRSA into the toe, and I was
promptly whipped into hospital where the toe was actually amputated. But
it did mean an eight week stay on intravenous antibiotics for quite an intensive
period to rid me of the MRSA virus. And, in fact, at one stage, although
I didn‘t realise it, I was quite ill, because one of the antibiotics was starting
to affect my liver, and so I was promptly taken off that, and then, of course,
given further treatments to try and rectify the problem. And eventually,
after an eight week stay, I came home, and life continued quite happily then
for a while, until I managed to get another blister on my big toe on the same
foot, this being the right foot. And eventually, I suppose must have been
a year later, I was back in hospital having half my big toe removed, and so
again having to recover from that. I was then being treated for hard skin
on the bottom of my feet, and this seemed to be the start of problems with
my feet in general, so much so that I‘ve now gone on to this year having lost
half my big toe on my left foot and all of my small toe, and just had a piece
of bone taken out of the bottom of my foot which had got a little bit of infection,
and it‘s that that I‘m now recovering from.
You seem to be walking quite
well.
I‘ve actually got dressings on
my feet. My problem is that because my feet have had these dressings on for
so long, the skin has become quite delicate, and, therefore, when they reduce
the amount of dressing it means that I‘m putting more pressure onto my feet
and the skin is constantly breaking down that I keep getting these silly little
blood blisters that I have to keep having treatment for. It‘s annoying really,
because, having had my right foot done up for so long, it‘s actually completely
clear now of dressings and blisters and ulcers and everything, but I‘m just
constantly having problems with my left foot. And this is just being a bit
of a nuisance at the moment, but I‘ve been told that if I‘m careful
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they should heal up, and I just have to be careful with the sort of footwear
that I wear and the amount of walking that I do, and not to wear shoes that
are likely to rub my feet.
You‘ve been in touch now with
the medical profession as a result of your diabetes for over thirty years.
What changes have you seen in the medical profession?
Well, we keep hearing about all
the amount of money that‘s being poured into the National Health, but having
had several stays in hospital now, varying from five days to three weeks,
eight weeks, what have you, there certainly isn‘t much of this money being
shown on the wards, because there seemed to be less and less staff doing more
and more work, and they just really don‘t get time to take breath. And it‘s
the same during the day as it is during the night. To them, night time is
daytime in hospitals, because the amount of noise that‘s going on is just
the same, and they‘re changing beds, they‘re treating patients, they‘re moving
equipment around, and it‘s just a twenty four hour cycle. And it‘s quite
evident, with the way that they‘re working, that they‘re absolutely exhausted
at the end of their shift.
What about the consultants?
The consultants, again, seem
to spend quite a lot of time on the wards. In fact, during my recent stay
this year, consultants were coming in to do their ward rounds at eight o‘clock
in the morning and they were still on the ward at five o‘clock in the afternoon,
and then going on to do operations, albeit emergency ones, but their day seemed
to be never-ending. I think they may well have got a small break in the middle,
but they always seemed to be about. And, in fact, one of the operations I
undertook, I actually saw the consultant at eight o‘clock in the morning, and she was in the operating theatre doing
the operation on my foot at quarter
to ten that night.
How has your experience of outpatients
changed over the years?
Outpatients, as such now, seem
to be far busier than they ever used to be. I‘ve always said that the outpatients’
clinics that I go to, I never seem to meet the same person twice, and yet
they always seem to be full. And waiting times can vary very much, although
I actually use hospital transport, which is
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to take priority over people that make their own way to the hospital. I do
find sometimes that, particularly at the eye hospital, I can wait at least
an hour to an hour and a half before I‘m seen by the consultant. It can be
quicker at the podiatry clinic; sometimes the waiting period is not much more
than three quarters of an hour. But we are given certain times for our appointments,
because the transport people won‘t pick up after certain times in the afternoon
because of the areas that they have to cover to take people home, which is
one advantage, because it means that we do get an appointment sort of not
later than three o‘clock in the afternoon, which is quite good.
How do you feel about not seeing
the same person twice?
As far as nursing staff goes,
I find this quite difficult with podiatry, because if I‘m being treated for
an ulcer, that person is aware of the situation, and then when I go back the
following week I see somebody completely different, they have only got what
is written down on my records to go by. They haven‘t actually seen the injury
to know whether it‘s worse or getting better. And I find that some people
can treat different ulcers in different ways. One day you come out with minimal
dressing on and next week you come out and it‘s completely padded up, and
this can actually affect the way that you walk.
Have you had any changes in insulin
in recent years?
The insulin now, whereas when
I first started, of course, it was the old bovine insulin, the pork insulin,
it‘s now all synthetic insulin. There was a problem, I think, as with a lot
of diabetics, when we changed over; it took a long time to get settled on
the new synthetic stuff. In fact, I think a lot of diabetics really wanted
to go back on to the old bovine insulin because they felt that it was a lot
better, and I know a lot of people were upset at having to make the changeover.
But having been on it now for several years, I find I‘ve got quite used to
it.
What about the equipment you
use, how do you find that?
I‘ve had a recent hiccup with
the equipment, because, I don‘t know how other blind people have coped, but
using the original NovoPens, the particular model that I had, when you pressed
the plunger down it clicked, and every click was two units of insulin,
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was quite useful to count up exactly how much you were taking. And if the
cartridge had insufficient insulin in it, it would actually stop - the plunger
would not go down, so you knew exactly what you‘d taken. But recently I was
given a new type of syringe to try, which is to accommodate the new three
ml cartridges, whereby you dial up the dosage at the end of the syringe, which
is okay, because as you turn the dial it will click and you count the number
of clicks. But when you push the plunger down, if there isn‘t sufficient
insulin in the cartridge, the dial will stop on a certain figure, but if you‘re
blind you can‘t actually read that figure, so you don’t know how much insulin
you‘ve taken. And that in itself presents a problem, because when you put
a new cartridge in again, you don‘t know how much more to take. But I‘ve
recently been in touch with our local chemist, who‘s been very, very helpful
- this is a branch of Superdrug. And what he‘s done, he‘s managed to get
hold of two different types of syringe for me, because I take a Mixtard 30
in the morning and Mixtard 10 at night. And these two syringes that he‘s
got me, one is flat and has the dial on the front of it that you can turn,
and it will click each individual unit, and if you actually miscount you can
turn the thing back to the start position and start counting again. It also
has a dot every five millilitres on the face of the ring by the dial, so you
can count that round and know what you‘ve got to. And again, it uses a disposable
needle, so you can inject into your arm or your leg quite easily with this
because it‘s quite small and compact, and when the syringe is empty you just
throw the whole thing away; it‘s all completely disposable. And for my evening
dose, so that I don‘t get mixed up, he‘s actually provided me with a pen that
is completely disposable, and this looks like a fountain pen. And what you
actually do is, you turn the part of the barrel of the pen and that will click,
you can actually feel it click, and that is two units of insulin. And you
count up, in my instance I take twenty six units in the evening, so I count
up two, four six, eight till I get to twenty six.
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when I press the plunger down, if there isn‘t sufficient insulin in there,
the dial will only go to the amount that I‘ve counted to, it will not go beyond
that point, so if it stops on eighteen then I know there‘s only eighteen units
in there. And the same with the morning syringe - if you go to dial up the
dosage and there isn‘t sufficient insulin, it will actually stop at the point
at which you‘ve got to, and you know exactly how much insulin you‘ve taken.
So is that as satisfactory as
your old system?
It is. The only thing is that
being disposable, of course, everything is made of plastic, whereas my old
original NovoPens were metal and much more substantial. I do find with the
flat syringe that you have to be very careful when dialling up, because it‘s
easy to turn two clicks and not hear it, because it is plastic and obviously
made thousands at a time, so therefore it‘s not one hundred percent accurate.
But, as I say, you can actually turn the dial back to the beginning and count
again if you think you‘ve misdialled.
And how do you test for sugar
levels nowadays?
Urine we don‘t bother with, because
the hospitals these days don‘t seem to take as much notice of the urine level,
whether you‘ve got sugar in, although when I go for my six months check up
they always ask me to take a sample with me, which I do, and they test it
at the hospital. But we do have a talking blood machine that we can prick
the finger and put a little bit of blood onto the tab, onto the stick, and
we put that into the machine and it will actually count the number for us
and give us the result.
Can you remember how long you‘ve
had that?
Yes, I‘ve had that quite a number
of years. I should think, ooh, must have been about ‘88, ‘89, I think, when
I got that.
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| | (24) Have
there been any changes in your diet over the years?
Well yes, one of the advantages
now with diabetes is that there are far more diet foods on the market, this
is prepared foods like drinks and that sort of thing. Because people have
got far more conscious of what they eat and weight problems and that, many
of the well known manufacturers now produce a diet range, which has helped
or given diabetics much more variety. The other thing I‘ve found is that,
particularly recently in my stay in hospital, that the type of food that you‘re
getting now is actually being catered towards diabetics, with a range of diabetic
puddings and unsweetened puddings that we‘re able to have, which has made
life just that bit more interesting and makes the choice a bit wider, because
you can get fed up with having mousse all the time. And I was being offered
things like pineapple slices in natural juice, peach slices, pear halves,
and even unsweetened apple pie, which was quite nice. And, in fact, I must
say that the hospital food that I had was quite edible. And I also found
that the people that are doing the catering in the hospitals now, I‘ve found
them to be very helpful, in as much as they come and fill the menu in for
me for the following day. And once you‘ve sort of made them aware of the
situation, that you can‘t actually see, instead of just planting the plate
down on the table and walking away without saying anything, they actually
make a point of telling you where your plate is, handing you your knife and
fork, and if you have got a pudding in a sealed plastic container they will
actually take the lid off, and, you know, make sure everything is to hand
before they walk away. And that I‘ve found very, very useful and very helpful.
So that‘s one area of improvement
then in hospital catering for diabetics. You‘ve talked about the negative
aspect of all the nurses and doctors seeming much more hard-pressed and seeing
a different person each time in outpatients. Would you like to just reflect
any more pros and cons in the health treatment that you‘ve had over the last
thirty years?
Fortunately, and I mean my doctor
is one in a million. Although I‘ve known him since he came into the town,
in fact we are very, very similar ages,
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about a fortnight between us in age, and right from day one he‘s always referred
to me by my Christian name, which I‘ve always found to be, you know, very
friendly, although I‘ve always referred to him as doctor. He has now taken
early retirement but is still working two days as a locum. And one of the
things that he has to do is to check my blood pressure regularly, and because
of the problems of going to the surgery, the stresses and strains of getting
there, this tends to create a false reading, he will just drop in at home
and take it when he thinks he will, and that way he gets a much more accurate
reading. And we sit and we have a chat, and as far as that goes I can‘t fault
the service. The whole surgery in itself is a very friendly organisation,
and even if I pick the ’phone up, they usually call me by my Christian name.
It‘s only if it‘s somebody new that doesn‘t know me that they refer to me
as Mr, but I like the way they work. And also in hospitals, the nursing staff
themselves actually bend over backwards to make sure that you‘re comfortable,
that you‘ve got everything. And on several occasions, I‘ve actually been
put in a room on my own, because it means I‘m working within my own environment
- I can have my tape recorder and my talking books and everything around me.
And as they pass the door, they will just stick their head round and say "everything
all right?", and, you know, "is there anything you need?".
Everything is just made so comfortable.
Have you actually noticed any
changes in the way you‘ve been treated by medical staff over the years?
I think since I‘ve been blind
I can say yes, there is a change. I suppose you‘re the minority, you‘re the
one that sticks out. I‘ve been, on various occasions now, been to hospital
and walked in, and the receptionist looked up and said "oh, hello Mr",
without me even saying anything it… And I think this is mainly because, as
I say, we‘re in a minority group, and that white cane makes us stand out.
So that means you‘ve had better
treatment?
Yes. People are more caring.
You know, there is the odd occasion when you meet a new member of staff, who
perhaps isn‘t quite sure what to do, and will actually try to steer you through
a door and walk you into it rather than through it. But most of them, once
you get them trained that you‘ll take their arm, then there‘s not a problem.
And with the way that the training is going on now, and getting more and more
popular, it‘s much easier to go into a hospital, because you know that that
nurse is going to sensibly sit you in a chair or walk you into a room or down
a passage, whereas before they were very nervous about it, you know, and weren‘t
quite sure what they should do or how much help they should give you.
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you noticed any changes in society‘s attitudes to diabetes?
Yes. We, when we go on holiday,
tend to go to a hotel particularly for blind people, and, of course, there
are a lot of people there now with diabetes, so the staff there are tending
to cater more for diabetics, again with choice of food and that sort of thing.
Life in general, I suppose, when you go into ordinary cafés and that sort
of thing, it‘s a bit more difficult. You don‘t find cafés and restaurants
doing special foods or anything for diabetics, it‘s very much of "well,
if you can‘t have it, you can‘t have it, it‘s as simple as that". Although
I think now, with the NovoPen, when you‘re sitting in a restaurant, there
are far more people opening up their shirt and injecting insulin into their
tummy so that they can have a nice sticky pudding or something. But as far
as the actual establishments catering for it, then no, there hasn‘t been that
much change.
Do you ever think about how different
your life would have been if you hadn‘t had diabetes?
Occasionally I sometimes think...
I wonder what it would have been like not to have been diabetic, just to be
able to go out and have a pint in a pub, and sit down and have a meal without
having to think “ooh”, you know, “is it going to be a bit sweet?”, or "shall
I have this?", or "it‘s time for my injection", or "I
mustn‘t forget to take this when I go with me", because when I go out,
even to go to outpatients at the hospital, I never go without taking the syringe
with me, because there have been odd occasions when I‘ve gone and they‘ve
said "right, we‘re going to have to find you a bed in the ward",
you know, and I‘ve found I‘ve not been coming home. And suddenly you‘re in
bed and you‘ve got nothing with you, and it all takes time to get things arranged,
you know. So at least if you‘ve got a syringe with you, you‘ve got insulin,
you know, you‘ve got your life saver, sort of thing.
But you sounded quite positive
about your life earlier in the interview?
Yes, I think you have to be.
I suppose, in a way, I‘ve been lucky because my diabetes has been fairly static,
fairly even. I‘ve been able to control it for most of my life. It‘s only
recently that I‘m starting to get the long term effects of diabetes now, you
know, being a problem. I appreciate there are a lot more people around with
much more severe diabetes than I‘ve got. I‘ve actually had people come here
to see my workshop and see how my wife works
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have been diabetic, and they‘ve been on four injections a day, and, you know,
quite seriously ill with it, so to a certain extent, yes, I‘ve been lucky.
What message would you have for
someone newly diagnosed with diabetes?
Be sensible. Be careful with
what you eat. It‘s not the end of the world, you just have to be that little
bit more cautious on what you do and what you eat. As far as life in general
is concerned, it shouldn‘t affect you too much. I suppose the one thing in
life that I miss terribly is the fact that I can‘t drive any more, well, I
say I can‘t drive, I can drive but I just can‘t see where I‘m going. And
you control it. If you can control it then you can control your life, and
you can do most of the things that other people can do; I won‘t say ordinary
people, because we‘re all ordinary in our own way, and you just, as I say,
have to be that little bit more cautious and careful in what you do. But
it shouldn‘t stop you from doing a job of work. It possibly may not mean
you can do the job that you really want to do, if it‘s going to burn up too
much energy or make balancing your diabetes difficult, but there‘s such a
wide range of jobs available these days, and with the fact that you can inject
basically any time of the day, that one can lead a normal life.
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