Yesterday we had two wonderful Mesowarriors who have talked to raise awareness. I know how hard that is to tell your story and to draw attention to your life. We do it though and we should tell our stories as we have to show people the human side to Mesothelioma. To the Patient.
The first was Kirsty who I made friends with when I read her Facebook and the devastating story of how she copes daily with Peritoneal and a small child.
She made me cry one day when she asked advice of how could she help her little daughter to remember her. I and others suggested a memory box and she soon arranged that.
We have chatted about weight and diet all things this young woman should not be having to chat about.
Mum dying from asbestos-related disease at just 33 as cause of illness remains a mystery
Kirsty List has revealed her battle with a deadly form of cancer that was discovered during surgery
A single mum has been told she will likely be dead before Christmas as she wastes away from an asbestos-related disease.
Kirsty List, who is only 33, has revealed her battle with the deadly disease, as the cause of her illness remains a mystery.
Kirsty, who has a five-year-old daughter, Aimee, was diagnosed with mesothelioma – a cancer of the lining of the body’s organs – after she began feeling unwell in September 2015.
She was initially diagnosed with gallstones but doctors discovered a tumour around her gallbladder when they attempted to remove her gallbladder during surgery.
Kirsty, of Exeter, Devon, told the Express & Echo : “It was only when they went to take out my gallbladder that they found a tumour around it.
“They left my gallbladder in and did a tumour biopsy.”
Six weeks later she was left stunned when doctors delivered the devastating news.
She said: “My consultants said I was suffering from mesothelioma. I was incredibly shocked because it’s something you hear in older people, not younger people. I didn’t know anything about asbestos disease.
“The problem for me is there is very little information to parallel me with anyone and work out any prognosis. Most people with asbestos are old and are men.”
Asbestos is a natural fibrous rock that was widely used within homes and other buildings until 1999.
Kirsty believes she was exposed to it either when she was a pupil at school in Reading or North Devon, or while working in pubs.
There are three types of asbestos-related lung disease and the type Kirsty has peritoneal mesothelioma which is cancer of the abdominal lining.
To treat the disease, Kirsty has tried five different types of chemotherapy but she says none worked to any great extent. She received her last course almost a year ago and had been on palliative care since.
Last December Kirsty was told she does not have long left to live.
She said: “It was a conversation I asked to have with my consultant and I felt ready to know.
“I said, ‘I don’t know if I will see next Christmas’, and my consultant said, ‘I think that’s about right’.”
Kirsty said her health has been gradually deteriorating since her diagnosis and even within the past two weeks she has noticed a difference.
She added: “It’s the pain and exhaustion that’s so hard to live with. I’m on quite a lot of pain medication and I feel tired all the time which makes it hard keeping up with my daughter, but luckily her dad, my ex-partner, is very involved in helping out.
“I walk with crutches now because I can’t walk very far without having to sit down.
“I do have a wheelchair but I’ve not braved using it yet. I have been on a mobility scooter in Exeter city centre but I felt like people were looking at me and wondering why I was using it at my age.
“At the age of 33 it’s kind of embarrassing. To look at me you would think there’s nothing wrong and it makes me feel like having a sign on my back saying, ‘I’m dying, leave me be!’.
“Knowing how you’re going to die and you’re just going to waste away is horrible. I will quite literally waste away. I have already gone from a size 16-18 to a size 8.”
Kirsty is focusing on keeping life as normal as possible for her daughter.
She said: “Aimee knows everything up and understands that I’m dying, and most of the time she is okay about it.
“There’s no hiding from the fact that she is likely to be six-years-old when I pass away.”
The mum has received a large amount of compensation from the government for having an asbestos-related illness. The money has been put into a trust fund for Aimee.
In the future Kirsty hopes more will be done to raise awareness about where asbestos is to help keep people safe, and not suffer like she and her family is.
She said: “I would not necessarily want asbestos to be taken out of all buildings as I know that would be incredibly impractical. But I would like to see it become part of everyone’s induction process when people start a new job.
“If asbestos is in a building everyone should be aware of where it is and how it should be treated to keep themselves and other people safe. It has to be a group effort.
“The asbestos register should also be overhauled to make sure reviews are ongoing.”
Then there was another story of another Mesowarrior A bubbly woman that I’m friends with on Facebook. her story is like mine as we washed clothes and hey ho! we have Mesothelioma when we should be enjoying retirement.
Mother-of-three, 60, claims her incurable cancer was caused by washing her late husband’s asbestos-ridden clothes
- Vivienne Swain, from Rochdale, was told she had mesothelioma in August 2015
- The form of cancer that affects the lining of the lungs is often linked to asbestos
- She would often come into contact with it washing her late husband’s clothes
A mother-of-three believes washing her late husband’s asbestos-ridden clothes caused her incurable cancer.
Vivienne Swain, 60, has mesothelioma – a form of the disease that affects the lining of the lungs and is often linked to chemical exposure.
She would often come into contact with what she believes to be asbestos when she washed Michael Power’s clothes.
The former joiner, who worked for Manchester City Council in the 1970s, died from a brain disease in his early forties.
But after struggling to breathe, Ms Swain sought medical advice herself before being told that she had just three years to live when she was diagnosed in August 2015.
Now she is appealing for people to support her claims that she developed the disease through washing dust off Mr Power’s clothes.
Ms Swain, from Rochdale, said: ‘I would shake the overalls before washing them and they would be heavy with dust – so much so that it would cover the kitchen floor, and I’d have to sweep it up.
‘I believe these were asbestos fibres.’
Previously fit and healthy, she began feeling wheezy in early 2015 – but thought it was because she was looking after a hamster at the time.
Then, in May of the same year, she went to the Greek island of Rhodes on a family holiday and found herself getting out of breath easily.
‘The hotel we always stay at is up a hill. I’ve never had any problems before, but found myself wheezing and having to stop,’ Ms Swain said.
‘I knew then that something wasn’t right.’
Back home, she visited Rochdale Infirmary for an X-ray where she assumed it wouldn’t be anything serious.
But, after studying the scan, doctors admitted her as an emergency patient.
They told her that it looked like a third of her lung had collapsed and asked her if she had suffered a fall or had knocked herself.
However, she had no recollection of any such events and was transferred to Fairfield General Hospital in Bury.
Over the next few months, she underwent a string of tests – but everything kept coming back negative.
Then, after undergoing further testing at Wythenshawe Hospital she received her diagnosis three weeks later.
‘I was told it was incurable, and a cold feeling went through my whole body,’ she said.
‘I didn’t cry, I just launched into asking about treatment. I was on autopilot. I kept thinking about how I’d tell my sons Craig (43), Paul (39), and Todd (26).’
‘I asked how long I had and was told, at best, three years. But I said to the doctors, ‘I guarantee you I’ll still be here in five.’ I’ve got too much living left to do.’
Following her heartbreaking diagnosis, Ms Swain was fitted with a pleural drain to help prevent a build up of fluid on her lungs.
Her partner, Ian Johnston, 63, was taught how to drain it, which he had to do roughly every three to seven days.
Next, she began chemotherapy, which she underwent every three weeks until October 2016.
Doctors have since told her that her cancer was most likely caused by asbestos exposure, which she believes was through washing her late husband’s clothing.
WHAT IS MESOTHELIOMA?
Mesothelioma is a type of cancer that develops in the lining that covers the outer surface of some of the body’s organs. It’s usually linked to asbestos exposure.
Mesothelioma mainly affects the lining of the lungs (pleural mesothelioma), although it can also affect the lining of the tummy (peritoneal mesothelioma), heart or testicles.
More than 2,600 people are diagnosed with the condition each year in the UK. Most cases are diagnosed in people aged 60-80 and men are affected more commonly than women.
Unfortunately it’s rarely possible to cure mesothelioma, although treatment can help control the symptoms.
The symptoms of mesothelioma tend to develop gradually over time. They typically don’t appear until several decades after exposure to asbestos.
Mesothelioma is almost always caused by exposure to asbestos, a group of minerals made of microscopic fibres that used to be widely used in construction.
These tiny fibres can easily get in the lungs, where they get stuck, damaging the lungs over time. It usually takes a while for this to cause any obvious problems, with mesothelioma typically developing more than 20 years after exposure to asbestos.
The use of asbestos was completely banned in 1999, so the risk of exposure is much lower nowadays. However, materials containing asbestos are still found in many older buildings.
Source: NHS Choices
Following her diagnosis, she contacted specialist asbestos disease solicitors Thompsons in Manchester to investigate her case.
Now, she is urging others who worked for Manchester City Council as joiners from 1969 to 1977 – particularly those that may have known her late husband – to come forward with information.
Determined to carry on in the face of her devastating illness, she hopes compensation will help her fund treatments that aren’t currently available on the NHS, but could potentially prolong her life.
She is currently working closely with charity Mesothelioma UK, raising awareness of her type of cancer, and also praised Greater Manchester Asbestos Victim Support Group for the invaluable help they’ve given her since her diagnosis.
They organised funding to help her, which she plans to repay if she gets compensation.
She continued: ‘I refuse to be defined by my illness. I’ve been given a sentence but I won’t give in to it.
‘I’ve kept very positive, and am surrounded by positive people. I’m not downbeat because there’s nothing I can do about this.
‘I’ll just keep looking forward, keep making plans and spending time with my family. I never used to be one for having my picture taken but now I do it all the time because I’m determined to make memories.’
A spokesperson for Manchester City Council said: ‘It is always deeply regrettable when anybody has contracted mesothelioma or any other asbestos-related illness, but it would be inappropriate for us to comment on this case at the present time.’
Anyone with information about potential asbestos exposure with Manchester City Council as joiners between 1969 and 1977 or anyone who worked with Mick Power during that period please contact Steven Dickens at Thompsons Solicitors on 0161 819 3571 or email firstname.lastname@example.org
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Im happy to have had this opportunity of blogging these to lovely ladies and although they need help in different ways I pray this Awareness will help them to find the answers.