It has been a sad week for the Mesowarriors UK. We have had to say goodnight to Kirsty, who at 33 was diagnosed with Peritoneal Mesothelioma. Why do they call it an old mans disease when so many younger people are being diagnosed. I contacted Kirsty after she appeared in the newspaper.
I gave her all I could about Peritoneal and even gave her the name of Doctor’s that could help her but she was so worried about leaving her daughter to travel to London for trials as she was a single Mum. But Mesowarriors have learnt it is the only way to get treatment we have to travel long journeys to find trials.
It is Kirsty that I had in mind when putting together why I wanted to Raise a Mavis Nye Foundation I put in the hardship grant. I want Mesowarriors to be able to travel but realise we have commitments. Children at school, Aging parents to look after and even Dogs to walk.
I stayed with Kirsty and messaged her as she became weaker and weaker. She asked for advice on what to do for Aimee that she would remember her by and we talked about a memory box. She bought one and started to fill it up with things.
Back in January I asked:
“How are you do you feel better today?”
4 January 11:31
“Morning Mavis. Not great unfortunately, think it’s safe to say that I’m having a bit of a crash. My chest and back are hurting and sleep wasn’t my friend last night. Not feeling good to be honest I don’t get fluid build up. Pain is mostly in my ribs/diaphragm and lower back. I don’t have regular scans any more, I’m purely on Paliative care now xx xx”
But she fought on she began to lose weight and I gave her advice about eating little and often.
Being on her own she didn’t have the strength to cook so I said buy frozen meals then you can eat what you fancy when you come to eat. She emptied her freezer and filled it up with frozen meals bless her, But she found she could eat better but she lived on crumpets.
She wanted to know how she could raise more awareness and I said she was doing great as she was I the newspapers. Then Kirsty did her famous BBC woman’s hour.
Kirsty: ‘Yes, Mummy’s dying’
Cherry Healey meets Kirsty to discuss single parenthood and illness and how being diagnosed with asbestos cancer has affected her family.
Release date:
26 March 2017
http://www.bbc.co.uk/programmes/p04xw33v
I spoke to Doctor’s and asked if they would see her and of course they wanted to help.
Then I stopped hearing from her and I saw she had gone into a Hospice and had become so weak. She was allowed to have her dear daughter with her that must have been really precious time spent together. You can’t imagine what was going through her mind knowing she must leave Aimee.
I kept in touch through Face Book and that’s where I learnt she had died her battle was over. Rest in peace you were a wonderful young lady and now you are an angel in heaven watching over your daughter – Aimee.
This is so sad and a reason why we must clear asbestos from our schools. Young Lungs are hurt to easy and Mesothelioma diagnosis is shorter. It’s not an old mans disease.
The story of a Young Mother with Mesothelioma.
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.
The 33-year-old has tried to keep her spirits high. 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 are.
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.”
Good Night Kirsty. I have kept my promise to you and raised awreness of your story !! xx RIP
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