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Joan Chambers Derby
With regard to “Mesothelioma Day” what a
brilliant idea. I whole-heartedly agree with it. My
thoughts at the
moment are very bitter and I can’t come to terms with
Peter’s death. I am
glad that I can put my thoughts down on paper. Peter was
diagnosed with
an Asbestos related disease in January 2005, it was found on his
X-rays, he had
had a heart attack in October 2004, and the very first post brought us
the news
that there was a spot on his lung that wasn’t right. After
going to the
Chest Clinic and having numerous tests and X-rays it was then diagnosed
as
Asbestos related. As the months went by, Peter had various C.T.
Scans and
we were told that everything was going well and the diagnosis
wasn’t Cancer, we
then breathed a sigh of relief; it was the best news ever. In
May/June
2005 Peter went to the City Hospital for another test which was a
needle in his
lung, and then it was diagnosed as Mesothelioma. That was a smack
in the
mouth neither of us could come to terms with that, but both thought
very
positive and decided that the best thing we could do was not really
live with
it, but do everything that the Doctors at the D.R.I. advised us.
In
September Peter started his Chemo and the news was good, the Cancer had
shrunk,
then on the 29th September after having 3 sessions of
Radiotherapy
everything went “pear” shaped and he became ill, he was
admitted into the
D.R.I. to receive Blood transfusions and Saline drips, he was there for
4 days,
he recovered, not his full health, but managed to live his life.
More
Chemo and the Consultant seemed pleased with him, but Peter
couldn’t get rid of
the fluid from his feet and legs, then he had to have Oxygen cylinders
to
breathe, but we were told that the therapy probably had scorched his
lungs. Wednesday Peter was exhausted and stayed in his dressing
gown
which believe me was a thing unheard of, he seemed a bit better on the
Thursday
and laughed and joked with me and got up for a couple of hours.
Friday I
said I was going to get the Doctor as Peters legs were really swollen
up, but
he said don’t bother try tomorrow. Saturday morning I
phoned the Doctors
up only to be told that there was a 6-hour wait. Then a Doctor phoned
me and
told me that if anything untoward happened I should get an Ambulance,
it still
didn’t click with me. The Doctor did come to see Peter at
about 11.00 am
and told us Peter was full of fluid and would he consider going to the
D.R.I.
to have it drained, which of course Peter agreed straight away, the
Doctor then
said it would probably be an overnight stay as Peter had Cancer and
would I
pack an overnight bag. I got Peter dressed and downstairs and sat
him in
the front room, then asked him about his slippers, he looked at me as
if he
didn’t know who I was, and then he went rigid and started to
shake. I
phoned for an Ambulance straight away and they were here in minutes,
Peter
became very violent and on arriving at the D.R.I. had four more fits,
and it
still didn’t occur to me that this was the beginning of the
end. After
waiting about 3 hours we were admitted to the M.A.U. Dept and I was
told that
all they could do was keep Peter free from pain and comfortable, by
then I was
in a state of shock, disbelief, anger and could have blown the Railways
off the
face of the earth. From admittance on Saturday 3rd
Dec. my
Darling had died, within 23 hours, we were all devastated, just not
believing
it, all in a complete state of shock. Then you have the awful
task of
phoning your family up and giving them the terrible news.
I asked the Doctor what Peter had died
from but of course he couldn’t tell me, and when I asked about a
post-mortem I
was told that I would have to ask for one. I rang numbers in a booklet
I was
given and was told that because Peter had died from an Industrial
Related
Disease he would have to have a post-mortem whether I wanted it or not.
The Post-mortem was carried out on the
following day, and we were told that he had died from
Mesothelioma. On
the Wednesday we had to collect the Death Certificate as we thought,
but then
found out that we had to attend a mini inquest, there were the usual
questions
and then we were told that until the Public Inquest was done we
wouldn’t be
able to collect the official Death Certificates, that was a real blow
to us, as
we would have to go through all the questions again, we were given
Interim
Death Certificates but they are not recognised by the Registers of
Births and
Deaths, so poor Peter hasn’t been registered as dead, that is
very hard and to
be honest doesn’t bear thinking about. All we have seemed
to do these
last 4 weeks is wait. My thoughts, anger, sheer disbelief, hatred
of the
Railways, and I feel as if I have been cut in half, it has affected my
family,
we have always been close so I can’t say that it has brought us
any
closer.
I do want to thank all of you for your
help, without you to guide us through this I don’t know what we
would have
done. We were at rock bottom when we received that piece of news
but you
stepped in and helped us. There are so many things that you
helped us
with, having the Doctor come to see Peter instead of us trying to
struggle to
Leicester to see him, big steps for us but you soon brought them down
to
size. Helping us fill forms in – how many? Pointing
us in the right
direction, I could go on and on. Thank you for coming to say
Goodbye to
Peter at his funeral, I was so happy to see you both, it was a heck of
a way to
come, but that’s the kind of people you are. Pete was so
proud to know
you and go to the meeting when he could.
Carol Anthony
(Widow), Derby
My husband, Alan Anthony, died on the 27th
May last year (2005) ten weeks after first showing symptoms of what we
discovered to have been Mesothelioma.
Alan was seventy-two years old, but had
been extremely fit until mid-March 2005. In January last year we
were on
holiday in Gran Canaria and went swimming in the sea; in mid-February
we were
walking in the Peak District and climbed a steep hill opposite Ilam
House; at
the end of February we were in London visiting an art exhibition.
During
all of these activities Alan seemed well and showed no signs of
breathing
difficulties. In mid-March, however, he developed bronchitis,
which his
GP treated with antibiotics and from which he seemed to recover by the
end of
the week. That weekend, however, while doing a regular walk with
the dog,
he became very short of breath and on the following Tuesday, 22nd
March, he was admitted to the Derbyshire Royal Infirmary with a blocked
right
lung. This was evidently a pleural effusion and during that week
the
fluid was drained from his right lung. The following weekend was
the
Easter Bank Holiday and there was to be a significantly reduced staff
in the
hospital, particularly doctors. Alan was therefore sent home.
At this stage it was not possible to
determine the exact cause of the pleural effusion and sending Alan home
was not
in itself unreasonable, but he should have been told that, if his
symptoms
recurred, he should return to hospital immediately. As it was,
although
the extreme breathlessness recurred almost immediately, we did not
realise the
possible seriousness of the condition and did not return to the
hospital until
the following Friday. Again, because it was the weekend, there
were a
reduced number of doctors on duty and the specialist respiratory
doctors were
only available on call in the event of an emergency. As a result,
Alan
did not have a biopsy until the Tuesday of the following week and then
we had
to wait a fortnight for the results of that. Finally we were told
on 19th
April that he had Mesothelioma. The weekend after that, he was
transferred to Glenfield Hospital in Leicestershire which is at the
forefront
of treatment of Mesothelioma. Alan apparently had an aggressive
form of
the disease, however, and by the time he was treated there it was too
advanced
for him to benefit from the process called “debulking”
which might have
prolonged his life. By the time he saw an oncologist, he was also
too
weak to withstand chemotherapy and he died just over a week later.
While I was aware as soon as we were given
the diagnosis that Mesothelioma is not an easily treatable cancer and
know it
was a terminal illness, I had expected him to live longer and indeed
the
average life span for those with this illness is several months.
I
therefore feel strongly that the lack of urgency shown at the hospital
may have
contributed to the rapid progress of Alan’s tumour, which I have
discussed with
the hospital.
All of the doctors at the hospital seemed
competent and caring, but I do feel that, even amongst medics, there
needs to
be a greater awareness that the disease can take aggressive forms and
that time
is of the essence. If prompter action had been taken, Alan could
have had
the biopsy a week earlier and the results of the biopsy could have been
produced at least a week earlier.
I feel very strongly that information
about the illness needs to be more widely broadcast. Alan was not
an
obvious candidate for this condition as he had worked all his life as a
Modern
Languages teacher and lecturer.
He also disliked DIY and did very little
in that line and so the source of his contact with asbestos is
something of a
mystery.
He did, however, work at a school where a
ceiling had collapsed but before he went there in the 1970s.
Removal of
debris and building works continued during his time there and this
would seem
to be a possible source of contamination. I mentioned this
because cases
of Mesothelioma are increasing and it is vitally important to be aware
of
potential dangers, particularly in 1950s and 60s buildings when
asbestos was
still in regular use.
I have been devastated by the sudden and
unexpected nature of Alan’s death. Our relationship was one
of love and
friendship in which we shared a whole range of intellectual and
domestic
activities. The sense of loss is enormous and I also grieve for
him
because he was enjoying life so much until the end of March last
year. If
we could have had some extra months, I do feel that would have helped.
It is essential that more is known about
Mesothelioma.
It seems to me that it is one of the least publicised cancers and I
admire the
work of the Derbyshire Asbestos Support Team in seeking to counter this.
Gordon Rhodes
of Cheadle
Gordon Rhodes of Cheadle, Staffordshire
was diagnosed with Mesothelioma in the spring of 2005. His
employment
history in the Building trade involved him working with asbestos. After
his
diagnosis his physical deterioration was devastating and depressing to
his
family who had previously expected Gordon to live well into his 80s
because of
his many interests and a general zest for life. He spent four
months in a
Douglas Macmillan home before moving into an NHS hospital for the
Elderly and
Terminally Ill.
His diagnosis was quick. The Doctors
suspected the condition when they looked at his first chest X-Ray but
he did
have to go for a biopsy before they confirmed it. The worst
occasion for
us all was when we were told that nothing could be done for my father
other
than nursing care and pain control which is the treatment he has
continued to
have.
As a family we feel that although there
was much ignorance about asbestos when he worked in it, more could have
been
done even before the mid 1970s as some voices were raised as to its
dangers. Also the very fact that we had never heard of
Mesothelioma until
the day of my father being diagnosed with it shows a lack of
information about
the condition and its devastating affects.
Mrs. Young (Widow), Burton-on-Trent
When Maurice was first diagnosed with
Mesothelioma at the end of April 2005, we were devastated and were told
to get
our affairs in order. We were then given a little hope that it
hadn’t
spread and was transferred to Mr. Waller of Glenfield, and they would
operate
on the left lung which could give him up to four or five years
longer.
For six weeks he had a lung drain on. The operation was
cancelled
three times. On the 5th July he was finally admitted,
only to
be told the next day that the disease had spread, then the news given
that
Maurice had up to a year to live was even more distressing. On 7th
July he saw registrar which was to build his hopes up yet again that
there was
the new Alimta drug which could help and there wouldn’t have been
any problem
in receiving the cash for it. After letters, phone calls and
Maurice’s
doctor stepping in, it was finally agreed. September was admitted
for
treatment after further scans. I was informed that they thought
it had
spread to other parts of the body and to his bones and they
didn’t think his
heart could cope with the chemotherapy. Anyway they decided to go
ahead
with it. He only had one session, which didn’t really
help. When
discharged he seemed to get worse and was on high dosages of morphine
and
oxygen. So from diagnosis to Maurice passing away it was just
five
months. I have no bitter feelings against the company in which my
husband
was exposed to asbestos as I don’t think any company was aware of
the risk
thirty or forty years ago. Maurice was one of the unfortunate of
many. I don’t think there is enough information about
asbestos. If we hadn’t contacted DAST, we
wouldn’t have realised
the impact this terrible disease had in people and their families who
had
worked with it. So for me and I know Maurice would agree, you
were more
help to us than anyone.
My anger is still with the hospitals, they
knew there was no cure but kept giving hope only to be followed by
disappointment.
Nellie Parker (Widow), Burton-on-Trent
Alwyn was admitted to Burton hospital in
June for an effusion. He had more than 2 litres of fluid taken
away. By this time he had lost a lot of weight and was very
breathless. Over the coming months Alwyn had 3
biopsies. The
first two were inconclusive evidence. The third proved
Mesothelioma.
The Consultant explained the findings and
told Alwyn he was not strong enough for chemotherapy but would go to
Birmingham
for radiotherapy. This was now October 2005. The beginning
of
November Alwyn travelled, by hospital transport, to Birmingham for five
days. It left him extremely tired and his breathing did not
improve.
Alwyn fought the tiredness as long as he
could, but he could not do anything without being breathless and tired,
so he
ended up staying in bed. The doctors and district nurses were
very good,
coming every day. I did not want Alwyn to go in hospital so I
looked after
him.
When Mesothelioma was diagnosed we were
both so shocked. We discussed it between ourselves but could not
tell our
friends and family. We decided that whatever treatment was
available
Alwyn would take it.
We did not feel any animosity to the firm
where Alwyn worked with asbestos; it was part of Alwyn’s
job. There were
no masks or any protection.
From November Alwyn lost the muscles in
his legs and by this time he had lost further weight. His
breathing was
still erratic, but he never complained. He was taking a lot of
painkillers and oxygen. Alwyn fought hard to see Christmas.
Although he
could not eat a lot he had a Christmas dinner.
On 28.12.2005 at 1 am Alwyn’s breathing
was terrible. By 8.30 am the doctor and nurse came and they said
he was
semi-conscious. I sat with him and talked to him. He was
trying to
say something but I could not tell what he was saying. Then fluid
started
coming from his mouth.
The DAST and our friends Tony and Janice
were always there for us. I don’t know how Alwyn and I
would have carried
on without their support.
I feel the desolation very much. We
had 46 happy years full of doing things we enjoyed. It would have
been
nice to have had a bit longer together, but Alwyn would probably have
had more
painful times. It is comforting to know that he passed away
peacefully.
Eddie Marlow
(Widower), Chesterfield
Ann was initially told that she didn’t
have cancer, then a lung operation at the Northern General Hospital
revealed
problems in the pleural area. The biopsies were diagnosed in
America by
the Department of Defence (Washington) as a Mesothelioma.
I felt totally inadequate and helpless to
help her. My heart cried out to her.
I was unaware of Mesothelioma and didn’t
realise it was a type of cancer at first. Then total shock.
From diagnosis the disease was very
progressive. We went to tribunal to obtain the higher rate of
benefit; we
had been turned down prior to this. Ann lived 3 months after
being granted
the higher rate.
Ann received 1 chemotherapy and 1
radiotherapy at Western Park but was unable to cope with the
treatment.
Pain relief didn’t work, but our own GP was wonderful.
Palliative care
was very good at Calow and Ashgate Hospice. Ann died on Christmas
Eve
2001 in Ashgate Hospice.
Why should this dreadful Mesothelioma
shatter our lives and cut short our love. The years have rolled
by, my
searing pain remains. I live in hope of meeting Ann again, in
heaven I
hope.
Pauline Reast
(Widow), Nottingham
We had never heard of Mesothelioma, never
knew the seriousness of the illness. Carl went through
hell. He had
worked hard all of his life, dedicated to his job, never smoked, had a
healthy
lifestyle and thoroughly enjoyed life, until in 2002 went to the doctor
because
of breathing problems. He was referred to the Hospital for x-rays
and the
start of several biopsies, each one coming back negative. He had
scans
with the same outcome. After the last biopsy Carl had, he vowed
he
wouldn’t have another, as the agony, he went through he thought
it was a waste
of time. His words were “it was like being stabbed in the
back”.
However, it was the last one because it came back positive. Our
world
fell apart. We were told there was no treatment and no
cure. My
feelings were “why us” but another cancer patient said
“why not us”. You
have to think about that. After that things happened so
fast. All
our plans for a happy retirement had fallen by the wayside. The
weight
dropped off him. My feelings were seeing such a wonderful loving
man
suffer as he did. He felt very bitter. A bigger shock was
to come,
as he appeared to have had a stroke, his left side was completely
lifeless. He couldn’t stand, couldn’t dress himself
etc. He was
completely reliant on me. However, it wasn’t a stroke we
were told that
the Mesothelioma had gone to his brain. We had been told that it
doesn’t
usually spread to other parts of the body. The lack of
information
available was not very good. The disease progressed rapidly, just
a
matter of weeks. He was given drugs and chemotherapy.
The Macmillan nurses were wonderful, so
dedicated and so caring. I nursed Carl myself at home with help
from my
family. I was an auxiliary nurse before I retired. I had to
have a
bed downstairs but the problem was the toilet was
upstairs.
Social Services provided a commode, I was loaned a bath seat and with
help from
family managed quite well. As Carl’s condition
deteriorated, he was
referred to Haywood House Day Centre for 2 days a week to give me a
break but I
just wanted to be with him every minute, time was so short. After
only 3
days he was admitted into Haywood House (in Carl’s words
“the nurses in there
are angels”) Carl passed away on the 14th July
2003 peace for
him at last but I am left with the pain, tears are falling as I write
and if by
writing this it will make other people aware, I know we are not wasting
our
time. I live now for my family and the memory of a wonderful
husband. My soul mate. Thank you Joanne and all of you at
DAST.
Sylvia Waddington (Widow)
I feel that anything that can highlight
the situation when someone, through no fault of their own, is struck
down with this
dreadful disease is definitely worth the effort we are asked to make.
Over approximately thirty years Jim worked
at different locations. Unknown to him and his work mates they
were
exposed to asbestos. No protective overalls were provided, or any
showers
after their work shifts.
In 1993 following a chest x-ray I was
found to have pleural plaques, which I believe was caused by having to
wash
Jim’s dusty work clothes. As I was unaware of being exposed
to asbestos
Jim was sent for an x-ray and he was found to have even greater amounts
than
myself. Jim was referred to a chest physician who examined him
and sent
his report stating as he was a non-smoker he only had a 1% risk of
developing
Mesothelioma. On this assumption when he was claiming
compensation he
took a full and final settlement. He was paid the compensation in
the
year 2000 – it took seven years. He had annual chest x-rays
and in July
2002 he was found to have fluid on his right lung.
It took four biopsies before the correct
diagnosis was made. It took from 17th July 2002 to 1st
October 2002. Ten weeks is too long. I am aware it is a
difficult
diagnosis to make. Taking a biopsy is quite an invasive
procedure,
after the first one he was in hospital for four days. We were
impatient
to get the diagnosis confirmed and treatment started, we thought
perhaps as the
disease was in its early stages he would respond to treatment
better.
On being diagnosed with Mesothelioma, our
feelings were of disbelief at first. This sort of thing happens
to others
– not us! Then, as Jim was a fit man with no lung or heart
problems and
the disease was at stage one he was eligible for the operation Extra
Pleural
Pneumonectomy, we felt there was a glimmer of hope. We were
impatient to
get the operation done as quickly as possible before the disease moved
to stage
two.
The firms and governments that knowingly
allowed the workforce to be exposed to a deadly disease are
criminals.
Who takes them to task? Obviously we were very angry and still
are, and
the feelings of frustration we were so helpless to do anything about
it.
If only he and all the other victims had known the dangers they would
not have
worked in those conditions.
The compensation that Jim fought for when
he was diagnosed with pleural plaques in 1993 took seven years to be
finalised. Numerous visits to the solicitor, phone calls and
having to
have witnesses to vouch that he was exposed to asbestos was belittling
in my opinion,
and they have the audacity to set the three year rule –
can’t claim if you
haven’t claimed within three years of knowing about the pleural
plaques.
Isn’t there something not right about this? No amount of
money can
compensate for such a loss and no one should have to fight for it.
Following his annual x-ray in July 02
fluid was found in the right lung pleural space. Various tests
were done
and eventually on 1st Oct 02 Mesothelioma was
diagnosed. The
radical operation to remove the left lung, the linings of the lung,
diaphragm
and the heart on the effected side was performed. Jim survived
the
operation well and also the radiotherapy which he eventually had.
He was not given chemotherapy as some
authorities advocate. I queried when the chemotherapy was starting he
said
nothing had been proven so he was not prepared to give it. I
pushed for
it again a few weeks later without success. At a stage when I
felt Jim
was too ill to cope with chemotherapy it was offered to
him!
He accepted this treatment but unfortunately was only able to tolerate
two
sessions, and then it was just palliative care until he died 23rd
October 03, just one year and 22 days post operatively.
I think it is very unfair that there is
different treatment in different area. Treatment should not be a
‘postcode’ lottery. If the reason for withholding the
drugs was due to
funding I would like to have been informed so we as a family could have
pooled
our resources and raised the amount needed. We all miss him so
much;
hardly a minute goes by that I’m not reminded of him.
Jim was a great character, he was nearly
seventy when he died but he didn’t look it before his
illness. He was
funny and witty; he had many friends from all walks of life. He
loved
having the “crack” with his cronies in the pub over a
pint. We enjoyed
the lovely holidays we went on and I’m so pleased to have those
fabulous
memories.
I haven’t mentioned all the marvellous
people we encountered along the way, i.e. Our GP was excellent with her
care
and advice. Her two colleagues the Practice Nurses and all the
reception
staff I class as my friends as I have worked with them for more than 25
years.
Janet the district nurse, I never asked her to come but was pleased
when she
did. Father Leon, the Curate from Holy Cross Church, just knew
the right
things to say to both of us. Jim made me laugh when I told him
the vicar
was coming to see him, he said “I don’t want him to come
– I don’t want the
neighbours thinking I’m having the last Rites.” He
did allow him to come
later.
I found your own team at Derbyshire were
brilliant and your advice was very much appreciated. Hopefully I
have
mentioned this before and thanked you. I’m lucky to be a
member of a
large close family, they all rallied round and still do two years
later.
We all know we have to die at some stage, but no one deserves to die
from a
preventable work related disease such as Mesothelioma or other asbestos
related
disease.
Sylvia Waddington
David
Keogh, Workshop, Nottinghamshire
“I first became ill at the end of May 2005
with what was thought to be a chest infection, a short course of
antibiotics
did nothing and my breathing problems when walking became worse and I
was sent
for an x-ray. This showed that I had fluid on my right lung to a
large
extent and I was referred to my local consultant who arranged for me to
have an
overnight stay in my local hospital for the lung to be drained and to
have a
needle biopsy. The samples being sent for test. The test
proved
inconclusive.
I was sent to see another consultant
arranged for me to go to The Northern General Hospital for a camera
inspection
and full biopsy. This took place on the 29th September
2005.
Two weeks after leaving Northern General I
returned to clinic where I was told that I had Mesothelioma and this
was mainly
caused by working with or close to asbestos.
The only time I could recall coming into
contact was at the approximate age of 17 years as an apprentice
engineer.
I remembered that the company I worked for had the factory walls
sprayed on the
inside for insulation. I was told that would be the likely
time-scale of
40-45 years before showing.
I have since been in hospital in Leicester
under Mr. Waller, Cardio-thoracic Consultant who performed an operation
on my
right lung and I am now awaiting radio and chemotherapy.
I cannot really come to terms with this at
the moment, in 2003 we lost our youngest son and on the first
anniversary of
his death my wife was diagnosed with lung cancer. I lost my wife
in
August 2004. I did not think that anything else could go wrong,
how wrong
I was!
I feel that I must point out that I
received immediate practical help from Derbyshire Asbestos Support
Team.
They helped me fill in claim forms and made claims on my behalf and
guided me
to a good solicitor who is currently looking into a private claim on my
behalf.
Ann Betts (Widow), Brandon, Suffolk
My husband was diagnosed with Mesothelioma
in January 02. He lived until October 05. He/we were
extremely
lucky in this area. Papworth and Addenbrooks hospital in Cambs
were
excellent and he was denied nothing. The hospital staff could not
have
been kinder. Our Macmillan Nurse, was so professional and
marvellous to
both of us and enabled me to keep my husband at home to the end.
I choose
to believe because of her he was totally unstressed, at ease with
himself and
died very peacefully because of her advanced planning. We were
immediately
offered legal help – it lead to no compensation – but at
least we were able to
go down that road and given the opportunity. All of this makes it
obvious
we are in a very good area for help etc. It is a very stressful
situation. The post mortem proved my husband had nothing wrong
with him,
other than Mesothelioma at 68. He should not be dead.
I would like to point out how incredibly
caring and obliging the Coroner and Coroners Clerk were. My
sister-in-law
was returning to the States on 24th October. As John
died late
night on 13th October, with the weekend in between it was
asking an
awful lot to get his post mortem and funeral (cremation) completed to
have the
funeral on the 21st October. The Coroners Office must
have
fast tracked everything and we were able to go ahead on 21st
October. The following week the Coroners Officer at Bury St.
Edmunds
phoned and asked me to write a report for the Coroners inquest, and
provided I
was in agreement, it would be on 15th November. I did
as they
asked and the Coroner returned a verdict of Industrial Disease. I was
really
pleased as one company John worked for refused to accept he ever worked
with
asbestos and the first company said they had no record of insurance
etc.
However, I and the family were satisfied with the results.
I feel so terribly sorry for all those
patients who must have to fight for help and treatment. My
husband was an
auto electrician and I have positive proof that it was asbestos in
starter
motors. I would be prepared to let anyone who needs proof a
copy of
our flyer. It just might help a claim.
A friend passed on your letter and
charter. Her husband and mine were friends and went through their
treatment together. Her husband only survived for 2 years and
died in
May. Their illness has resulted in us women becoming firm friends
– but
what a loss!
The photograph, taken on 2nd
August 2005, shows John (on Ann’s birthday) – just 2 months
before John
died. He had lost weight but looked well, fit and was able to get
out and
enjoy himself. This was the last one taken of him.
James Neale
1948 – 2005
It was April 2003 and it was under two
weeks before we were due to go on holiday to Mexico. Jim had been
feeling
increasingly breathless for a few weeks so when he went to the doctors
for a
repeat prescription he decided to mention it. The GP sent him for
an
X-Ray which revealed fluid on his right lung. An urgent
appointment to
see a specialist was made and the holiday had to be cancelled as the
fluid on
Jim’s lung made it dangerous to fly. That turned out to be
the least of
our problems.
We attended the chest clinic on 24thApril
and a sample of fluid was taken for testing and a brondcoscopy carried
out.
At a later appointment the results were discussed and we were told that
Jim had
a non cancerous reactive nodule. He was booked in for a CT scan and an
appointment to have the fluid drained. After that we were sent a
letter
to say the scan had identified changes and we were to be referred to
Glenfield
Hospital in Leicester. On the 20thMay we attended
Glenfield
Hospital and saw Mr Waller who advised us that he believed Jim had
Mesothelioma
although we were told that it was difficult to diagnose. We had
never
heard of it but we knew it was very serious. At that point our
whole
world caved in and was never to be the same again.
Jim was admitted on June 3rd
for an operation in order to diagnose the disease for certain.
There
followed an extremely stressful and anxious 10 days waiting for the
results
which confirmed Mesothelioma. As the consultant talked to us it
was
almost like being in a film - very surreal as though he was talking to
someone
else. We were left in no doubt that without treatment he would be
dead
within 9months and that with treatment it would still be
terminal. No one
survives this dreadful illness. Fortunately following tests Jim
was
deemed fit enough to undergo radical surgery to remove his right lung
and lung
and diaphragm lining. This was a high risk operation but Jim
never
considered not having it as he knew without it he would soon be
dead. The
operation went ahead on 23rd June and thankfully was
successful.
This was followed by a course chemotherapy which started in August and
was
completed by the end of October.
Once Jim had recovered from this he was
off, he was determined to pack as much into whatever time he had
left. We
travelled extensively and even managed to go on three cruises, on the
first one
we were married by the Captain and it was a very special day for both
of us. We
enjoyed our time together so much, but the fear was always hanging over
us
knowing that at any time IT could be back and destroy everything.
Living
with the disease was difficult but we were grateful that we had been
given some
time together as we knew others were not always that lucky.
Jim got pneumonia in May of 2005 and it
was eventually confirmed that the cancer was back. Jim died very
unexpectedly on 27thAugust and my life will never ever be
the same
again. Jim was the love of my life and my soul mate and I miss
him
dreadfully, but I hope that eventually I will be able to comfort myself
with
the many wonderful memories I have of our life together.
I am only 50 and am a widow it is not
really what you expect. People are still being exposed to
Asbestos on a
daily basis and many people have no idea what it actually looks like or
realise
how deadly it is. No one I have spoken to had heard of
Mesothelioma,
Asbestosis yes, Mesothelioma no. The Government knew in the 1920
and
1930s that it was dangerous and did nothing about it. Jim was
just a
plumber who loved his job and worked hard, he didn’t deserve to
die doing
it. He left behind three sons and four beautiful grand daughters
who he
will never see grow up. Somebody should pay for that and more research
must be
done to try to find a cure.
David Childs, Northampton
During summer 2005 I was finding my work
as a self-employed plumber and heating engineer (now mainly
concentrating on
gas work) harder. It was taking me longer to complete
installations; I felt tired by the afternoon and my toolbox
felt
much heavier than it used to. I got short of breath going up
stairs and
when walking – which was unusual because I loved walking and had
done a lot of
it, we lived and loved the outdoor life.
So, at the end of July 2005 I made an
appointment to see a doctor. After a quick once-over he told me
to lose
some weight. I was no heavier than I had been for many years but
thought
he knew best and tried to cut down on food. However, my breathing
got
worse and after about five weeks revisited the surgery to see a
different
doctor. This time the doctor sounded out my chest thoroughly and
sent me
for an x-ray immediately. This was on a Friday afternoon and I
received a
letter from the doctor’s surgery on the Saturday morning asking
me to contact
him as soon as possible. Not a good weekend at all!
On the Monday I was sent to Kettering
General Hospital and there they drained approximately two litres of
fluid from
my pleural cavity, which was quite a painful experience! Whilst I
was
there the doctors were asking various questions and the word
“asbestos” kept
appearing. I had started worked with it over forty years ago but
thought,
wrongly, that I had escaped the harmful consequences of it.
About three weeks after that I was sent to
a consultant who told me that he thought I had an asbestos related
illness and
he would refer me to a surgeon as soon as possible. Another
three
weeks passed before I saw the surgeon who said I would have an
operation at
Leicester when they would put a camera into and around my lung cavity
to investigate
and to seal the pleural cavity to prevent fluid build-up.
On 27
November I went into Glenfield Hospital for the biopsy - four
months after
my first visit to the doctor! In the hospital they gave my wife
and I
books to read on Mesothelioma – our first cold inkling of the
cruelty of the
disease! On return from the hospital I went to see the
consultant
and he told me that it was Mesothelioma and, with a nurse present, gave
my wife
and me the cold facts of the short life span expectancy once
diagnosed.
We were devastated – I am 57 years of age,
as is my wife. Our children had flown the nest and we had just
started
preparing for early retirement, after nearly forty years together.
We had
purchased a caravan and an estate car to pull it and planned to have
most
weekends away now we had enough time and money to do what we wanted to
do. I am
a Town Councillor and, at present, Deputy Mayor, and will be the Mayor
next
year. We felt so angry and cheated – why
me? What had I
done wrong? The answer was not what I had done wrong but
what my
employers had done wrong. I worked for a big construction company
locally from
fifteen years of age and when I was about seventeen was using asbestos
regularly – in mixing compounds, ropes and roofing sheets.
No Health
& Safety Executives told the employees to use masks or protective
clothing. The material was cheap and used in all parts of the
construction industry.
I also felt angry that the government had
not told the companies not to use the material once they found it was a
dangerous substance – in about 1939! I was using it
in the late
1960s and early 1970s.
So, I became ill and unable to work.
I had been self-employed for many years and therefore, as well as being
ill –
had no income. I had enough plumbing and gas work –
if I was well
enough to do it – to keep me in full time work constantly.
It was an
extremely worrying three months – to be told you have a terminal
condition is
bad enough but to be told that you will never work again was quite
distressing
My wife was, therefore, unable to stop work to be with me until we were
sure we
would have some form of income. Income Capacity Benefit
kicked in
after a few weeks, the problem being that I was self-employed. Once
DAST became
involved – my benefits were soon sorted – this took a load
off our minds!
Nevertheless, this is still far short of the income we would have
enjoyed from
my trade for the remainder of a normal working life.
Jean Kerry, Tibshelf
My dear husband Frank started losing
weight and saying he had indigestion, taking all kinds of
remedies. The
weight was just dropping off him. In March 2004 he went to the
doctors
who put him on antibiotics for two weeks; still in pain he went back
again two
weeks’ later. Another course of antibiotics, still not
working. Six
weeks had passed.
Next he was sent to hospital for a scan
after waiting a few days we returned to hospital for results.
“Could not
see anything” they said. He was put in a ward with about
eight
beds. We felt happier because he was!. After two or three
days he
was put in a corner, they said “we think he has TB”.
In there about eight
days then home with lots of tablets and medicines. He could do
nothing because
he was in so much pain.
Next he had a camera down his throat.
We returned for results. The doctor came through smiling and said
“all
looks fine”. We felt better. They could not find
anything. We
thought all the tablets he was taking would clear everything up and
make him
better. Getting worse now, another biopsy. Waited five
weeks for
results which we got in July 2004. It was then the doctor told us
it was
terminal. You have Mesothelioma. We were absolutely
dumbstruck. There was nothing they could do for him, only in
there 10 to
15 minutes but he made an appointment for Frank to have chemo where the
needles
had gone into his skin for the biopsy. We went and sat there for
about
one hour and Frank was very poorly. When we eventually saw the
doctor he
said “I can’t do anything because I can’t see where
the needles went in”.
Two days later he went into Ashgate Hospice for about 2 weeks. He
came
out with all new tablets and morphine, plus the Macmillan nurse came
every day.
She was brilliant, helped us with everything.
One day she came and Frank was outside on
the back yard walking up and down picking up chairs, putting them down,
really
agitated. He didn’t know what he was doing. She rang
the hospice
and he was taken straight back in. It was terrible to see
him. We
were all heartbroken. They gave him morphine and more morphine
and then
he died, 22nd September 2004. My family and I will
never be
the same again. We all worked together, did everything
together. He
was the rock of our little family.
I must mention John and Joanne at DAST;
they have been very wonderful to us and continue to support us.
As Thomas
Fletcher & Co. of Mansfield went out of business in 1976, it is
proving
very difficult to find the insurers. Frank worked at the Company
on a
tunnel at New Bevercotes Colliery using bags of blue asbestos which
they
blasted through the tunnel. Its 16 months now since he died and I still
cannot
believe he has gone. I cannot settle into things. Our
little
business, A. J. Miniatures, has gone, he helped us with it. All
his tools
are here, his coat still hung on the door. We have no heart in it
now. A big light and leader in our lives has died out.
THE
PETAL GUIDE
The
PETAL
guide to recovery from a major operation by Graham Sherlock-Brown
(September
2006)
“Major
operations can have an unimaginable impact on your life. Whether
it be
the result of an accident, injury or a disease (in my case, cancer),
operations
can totally change your lifestyle. Major illnesses can have a
similar
effect if you do not achieve a complete recovery. I had an Extra
Pleural
Pneumonectomy (removal of right lung, chest wall, diaphragm and part of
pericardium) in October 2002, to try to ward off the effects of
Mesothelioma.
Having recovered my quality of life to a significant extent, I feel
qualified
to impart some guidelines on how to do this.
PETAL is my
acronym for the five key
parts:
P
– Is for Positive
Attitude.
This is key to everything that follows. Without it you probably
won’t
bother. But you only have one life so you have to decide quickly
how you
want to spend the rest of it. Addressing it with zest and
positivism is,
in my view, the only way to regain any sort of quality of life.
E
– Is for eating properly and
Exercising well.
Even if you’ve never done it before it is never too late to start
exercise. If you only have one lung left you are down to half
capacity so
you have to get the remaining one into good shape to stand any hope of
recovering your quality of life. Only exercise can do this.
It
isn’t easy, it takes a long time and you cannot rush it but I can
vouch for the
fact that it is worth it. Your immune system is fundamental to
any
prospect of long term survival so you have to look after it.
Healthy
eating and drinking is key to this.
T
– Is for Targets.
The recovery process can seem so long and tedious that you may wonder
if it is
worth it after a while. Setting targets helps enormously in
demonstrating
that you are improving; achieving them doe’s wonders for your
attitude.
In my case I had both short and long term targets. The short term
ones
were mainly on the exercise front. It helped that I was used to
having
them anyway but I had to start from scratch after the op. The
simple one
was the number of calories I could burn off in ten minutes on a
treadmill. I started at around 70 three years ago and have now
reached
150. I can also run again for short periods which I haven’t
been able to
do since the op. Walking was initially painful, especially up
small
gradients; even climbing the stairs. Now I can climb
mountains. The
point is that without targets you may not know if you are getting any
better
and that can be a big disincentive. Two long term targets were to
become
a grandfather (my granddaughter is now nearly two and absolutely
wonderful) and
to see my 60th birthday (celebrated in August 2006).
A
– Is for Adaptability.
Having a major operation causes so many changes that you have to adapt
to them
very quickly to avoid being consumed by your inability to cope with
life.
For instance, I was no longer able to work, I couldn’t do the
sports I loved
and even my sex life was greatly affected. These can be pretty
major
parts of your life to lose all at the same time. I was
lucky; my
company looked after me well, I have many interests and was able to
replace the
sport with more sedentary occupations; and I have a very understanding
wife! The biggest part was coping with retirement as I could no
longer
work. Discovering the Open Studies courses at Warwick
University and
taking up Bridge have helped
enormously to fill this gap. I’m also addicted to Sudoku
and crosswords.
L
– Is for Living your life.
The most important one of the lot; but you cannot do it without the
other
four. Since my op four years ago I feel as if I really have lived
life to
the full. Initially, although I was perhaps doing better than many
people, I
still had a very limited life compared to what it was. I spent a
lot of
time doing jigsaw puzzles, watching the television and going for short
walks. My posture was awful giving me a lot of back pain.
After six
months I was finally able to travel (abroad) and start going back to
the
gym. Now, four years later I can look back with great
satisfaction on my
achievements. The many holidays we have enjoyed include trips to Canada, the
States, Marrakech, Prague, Budapest plus
various cruises. I’ve attended three
courses at Warwick University covering Geology, Archaeology and
Creative
Writing, none of them intellectually demanding but all highly
enjoyable.
As a result I’ve joined the Warwickshire Geological Conservation
Group and the
Warwickshire Wildlife Trust. I’m now a County
Master at
Bridge after only two years –
but I do play four times a week! I’ve been on Countdown,
unfortunately
losing to an eventual Octochamp, and qualified for the Times Sudoku
Championship in Cheltenham both
last year and this. I
go to the gym at least twice a week and can play Golf again to my
original
handicap. I’ve also been doing Pilates for two years which
has done
absolute wonders in sorting out my posture and muscular problems.
To top
it all I have a lovely granddaughter. But best of all, I now feel
that I
have completely recovered my quality of life. In many ways it is
better
than it was.
Where do I go from here? At one point I felt cheated in
developing
Mesothelioma. I’d never worked with asbestos and always
looked after
myself. So why me; it wasn’t fair. My surgeon gave me
a stay of
execution. He could not promise any long term recovery because
historically this does not happen. He told me to treat the near
future as
my Golden Years and to enjoy them while I could. I can look back
and say
I’ve used them to the full so far. I’m now resetting
my targets. I
intend to write my recent life story. Frankly it is not easy to
adopt the
right discipline but the Creative Writing course has helped
enormously.
I’m hoping to play at least one game of hockey again so I know I
can do
it. But the main thing to decide is how to spend my Sixties and
where I
will celebrate my 70th birthday – yes, I do now look
that far
ahead. And even if by some misfortune Mesothelioma comes back to
strike
me again, I won’t feel cheated and will try to treat it as just
another
challenge. But it isn’t going to happen.
© David Martin 2004-2009
Charity
Registration No. 1119684
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DERBYSHIRE
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