Behind-the-headlines story of NI mum who refused to sign a form stating she was terminally ill in order to get benefits
The Larne mother-of-two has defied medical forecasts and continues to work tirelessly to raise awareness of the rare and aggressive inflammatory breast cancer which led to her undergoing a double mastectomy. Stephanie Bell reports
Thousands of people were moved when mother-of-two Lynette McHendry went public last week about the challenges terminally ill people face when claiming benefits, but behind that brave stance is a story of even greater courage in the face of adversity.
Lynette (40) from Larne, who has two boys Jay (14) and Lewis (11), has been living on borrowed time for the past three years.
In June 2017 she was told she had just seven months to live but over 17 months later she is feeling good and continuing to defy the odds.
While undergoing gruelling treatment she has also found the strength to campaign hard to save lives through awareness and fundraising while also building special memories with her family.
An inspiration to many, she was awarded an MBE by the Queen this year in recognition of her voluntary work and the money she has raised for research - mostly while undergoing gruelling treatment.
Lynette had a rare and little known form of breast cancer which was initially missed by doctors.
She went for tests complaining of pain in her left breast and was stunned when a cancerous lump showed up in her right breast which wasn't giving her any problems.
Told that she her left breast was fine it wasn't until some months later when she was still enduring immense discomfort and pain that it was discovered she had cancer there, too.
Inflammatory breast cancer does not present as a lump and many women are unaware of the symptoms which is why Lynette has been so passionate about raising awareness.
Lynette's medical journey during the past three years has been brutal and relentless.
Following a double mastectomy and chemotherapy she has also had three tumours removed from her brain, had full brain radiotherapy and then faced another seven months of chemo when the cancer spread to the lymph nodes in her neck and collarbone.
She has also had 19 blood transfusions in the past three years.
While going through her first course of chemo and a double mastectomy she put a fundraising plan in place to raise money for research into inflammatory breast cancer.
After just nine months she was able to hand over £28,000 to Inflammatory Breast Cancer Network UK which was then given to Dr Berditchevski of Birmingham University to initiate research into this aggressive breast cancer.
Since then she has raised over £40,000 to help fund breast and ovarian cancer research studies ongoing at Queen's University, Belfast.
In addition to this she has provided support and advice to many women diagnosed with all types of breast cancer, taking part in forums across the UK.
She recalls her own dreaded misdiagnosis: "In July 2015, I visited my GP with a pain in my left breast.
"I was referred for a mammogram at which stage I was told that it was glandular and nothing sinister; it was totally dismissed and I was told there was nothing there.
"However the mammogram had detected a small lump in my right breast.
"Following a biopsy I was diagnosed with triple negative breast cancer in my right breast for which there is no treatment.
"I had a lumpectomy but while recovering from surgery the pain in my left breast continued as well as the breast getting larger, becoming hard with dimpling and hot to touch.
"At the end of September I saw my oncologist and I showed him my left breast. He took one look and sent me to have a biopsy. It confirmed I had cancer in my left breast and I started chemo for it that day.
"By that stage my breast was twice the size of the other one, pure purple and I had shooting pains through it. It was also very dimpled. Those are the symptoms of inflammatory breast cancer.
"I went from having stage two to stage three cancer and was told I needed a mastectomy.
"I know a lot of women diagnosed with cancer want to keep it very private; however I felt I needed to get awareness out to women about the symptoms of Inflammatory Breast Cancer as it is so aggressive any delay in diagnosis could be the difference between life and death."
Lynette worked in the civil service but has had to retire on medical grounds. She has emerged as a voice for people who would not otherwise have the confidence to question medical opinion.
Some months after her diagnosis she arranged a face to face meeting with her surgeon to discuss why her cancer was missed and ensure it wouldn't happen again.
She says: "In my previous life as a civil servant I would be required to communicate with all levels of people therefore have been the voice for ladies who would not have the confidence to question their diagnosis and treatment plans.
"At every opportunity I tell people about Inflammatory Breast Cancer.
"I don't refer to it as breast cancer as I want every woman to know of the very different symptoms than a lump. I have been surprised by the number of health practitioners who have never heard of it.
"I met with my surgeon to ensure lessons be learned on my misdiagnosis to ensure it does not happen again.
"My aim is to give women a voice, emotional support and practical advice from my own experience over the past three years.
"My main advice to women is never ask for a prognosis and do not look at the statistics as I am walking evidence that you can defy the odds if you put every ounce of hope and willingness into living rather than dying."
Defying the odds is something she has been doing since last June after her third brain surgery and full brain radiation.
At that point she was told that at the most she should have seven months to live.
She then went on to develop cancer in her collar bone and neck and went through more chemotherapy which only finished in March of this year.
She has a full body scan and a brain scan every three months and so far is clear of cancer - doctors are baffled and her neurosurgeon just looks at her in wonder.
She says: "I am so headstrong and I just feel for so many people who don't question things. I have had to fight for so much and I've changed trusts and oncologists and if I hadn't been the person I am I wouldn't be here today.
"My doctors are baffled and my neurosurgeon has told me I am unique.
"They said whatever I am doing to keep doing it. I take cannabis oil, turmeric, lemons, herbs and other healthy foods which research has shown helps.
"A lot of problems start in the gut, so I take probiotics as well. I try to eat healthily although I've been on steroids for two years and have put on four and a half stone which makes it difficult to get around."
While coming through so much and thinking of others she has also been focused on her family and building special memories with her husband Graeme (43) and two boys Jay and Lewis.
Against her will she had to take early retirement from her job and she has used her pension to treat her family to some amazing trips abroad.
Last year they visited America, touring LA, Vegas, New York and San Francisco and this year they enjoyed a family trip to Madrid.
Lynette has been honest with her boys about her health and has remained very positive for them.
Leaving them is something she cannot bear.
She says: "I've had that difficult conversation with them and I've explained that they are only getting so many trips because I got my pension and the only reason I got my pension is because I had breast cancer.
"If I am looking normal they cope okay but they don't like to see me not well, so no matter how I am feeling I try to get up in the mornings and be there for them, even if it means going back to bed when they go to school.
"I watched that £50 Christmas advertisement the other day in which the mum leaves the tapes for her son and I sobbed and sobbed.
"It breaks my heart and I am just going to enjoy what time I have with them and try to have a normal life."
Last week Lynette again took a stand for terminally ill people when she refused to complete a benefits form in which she was asked to declare that she had just six months to live.
When she was assessed for benefits, she was told she could "save some time" if her GP or oncologist completed a form to say she had just six months left to live, as there would be no need for her to complete another assessment.
Lynette described it as "cruel" and like signing a "death warrant".
She is just one of a number of people who have faced issues getting benefits while coping with serious illness.
A local father Tom McWilliams also recently highlighted the issues facing his daughter Roisin (28) who was denied financial support despite undergoing treatment for stage four Hodgkin's lymphoma.
Also the father of disabled Co Down man Declan McMullan questioned the PIP system for the approach taken towards his son.
John McMullan (50) revealed how Capita staff wanted to visit and assess his son Declan, who has locked-in syndrome for PIP, despite him being "one of the most disabled people in Northern Ireland".
Lynette says: "It's totally unfair. I don't want to think of my last six months of living, and I certainly don't want to think I will be spending those months filling out forms to get a payment to support me and my family. It is cruel."
An independent review of PIP assessments has recommended the requirement for the terminal illness form to be completed be abolished.
However, it will require a minister to be in place in Northern Ireland to make the decision on the matter.
Given the continued absence of devolution, Secretary of State Karen Bradley is being urged to intervene.