‘It breaks my heart when I look at my children and think they’ll be left without a mummy, but I plan to live as long as I can... my Facebook page is a place where I get everything out’
Fighting to stay alive after being told her cancer was incurable Northern Ireland mum Lesley Kennedy began fundraising for a new treatment and set up her Terminally Fabulous Darling Facebook page to update her supporters. Her posts are, by turns, poignant, revealing and inspiring. Leona O’Neill meets this remarkable woman
A terminally ill Londonderry mother who has amassed thousands of followers while posting about her ‘roller coaster’ cancer journey says she likes to keep her updates ‘real’ regardless of how uncomfortable it is to read.
Mother-of-three Lesley Kennedy (35), from Maydown, has been charting her journey with cancer for the last year on her Terminally Fabulous Darling Facebook page.
Through her posts, photos and videos she brings her thousands of followers into the hospital wards as she receives chemotherapy and into her home as she deals with the aftermath. She opens her heart in her darkest moments, reveals her heartache in her bad days and shares her victories and her good days.
Her often heartbreaking and raw status updates spark outpourings of love and support. Her followers are there with virtual hugs and positive affirmations to keep going when challenges arise and are there cheering her on when things go right.
Lesley, who is married to Lee and has three sons — Ben (14), Jake (10) and Corey (8), was diagnosed with breast cancer when she was just 32 years old.
“I found a lump in my left breast,” she says. “I went to the GP who said that given my age it was probably nothing to worry about, but she referred me to the breast clinic at Altnagelvin Hospital.
“I had a mammogram, ultrasound and a biopsy that day and found out I had Stage Two Estrogen positive (ER+) breast cancer.
“I had two tumours in my breast and evidence of cancer cells in my lymph nodes. I was told there and then that I would need a mastectomy, chemotherapy and radiotherapy. I thought immediately this is bad, that I’m going to die. I don’t recall any more of what was said in that room that day.”
The young mum spent 2015 undergoing surgery, chemotherapy, radiotherapy and hormone therapy. In 2016 after developing a severe pain in her ribs doctors discovered her cancer had spread to her liver, lungs and bones.
She was told that her cancer was now terminal and that only palliative chemo would be offered. Desperate to stay around for as long as she could for her boys, Lesley began researching a radical treatment that would give her more time.
“I set about researching a treatment called SIRT,” she says. “It is an internal targeted radiotherapy treatment. It is not carried out on the NHS for breast cancer patients but I had read of its amazing results. I set up a Just Giving page and began fundraising to raise the £25k to have this done privately. I couldn’t believe that I had reached my target within one week. I came off chemotherapy and had this procedure done in the Christie Clinic in Manchester in July 2017.
“All the tumours within my liver had an amazing response to SIRT, shrinking all of the larger tumours and completely removing the smaller ones. I was delighted.
“But unfortunately a follow-up CT scan showed new lesions within the liver. The ones treated with SIRT has shrunk but new ones had grown around it. I had to go back on chemotherapy and am still on it.”
Lesley says that it was while researching and fundraising for her SIRT treatment that she set up her Terminally Fabulous Darling page to let those who got behind her know how her treatment was going.
“I created Terminally Fabulous Darling after setting up my Just Giving page,” she says. “I felt that those who donated towards my SIRT treatment genuinely cared and I felt I would like to keep them updated on how the treatment went as this was a treatment not used within the NHS.
“I also wanted to raise awareness to those faced with a cancer diagnosis that there are other treatments available outside of the NHS, that if you search for it you will find it as you won’t be told about it.
“Updating my page is about connecting to a wider audience who are interested in the topic in hand. I didn’t feel my personal page was the place to do this as there may be friends on there who felt uncomfortable reading some of the things. The page keeps those who do read it up-to-date on how things are going so I am not continually repeating myself. It also removes the awkwardness for them if they are wondering if they should ask me how I am all the time.
“I like to keep things real on my page and also try to lighten the mood by adding a bit of humour because that’s the sort of person I am. It’s not about frightening people — it’s about real life. This is me, it’s real, it’s happening.”
Pragmatic and frank, Lesley adds: “I like to give the good and the bad days and the reality that treatment doesn’t always go to plan and how my life is a roller coaster of highs and lows on a daily basis.
“My Facebook page is a place where I can get everything out and into words. It really helps me understand where I am at and deal with the situation. People can choose to read if they wish or not if it upsets them. However, my intentions are not to upset anyone.”
Lesley has found the feedback from her page uplifting. “I am overwhelmed with the amount of support I have from it,” she says.
“I have never done anything like this before so I wasn’t sure how it would go. There have been numerous occasions when I was going to delete the page as I felt it just wasn’t for me but realised it is a release for me to post.
“I love how you can have a terminal diagnosis or live with a chronic condition and still be fabulous when you learn to accept it. I called my page Terminally Fabulous Darling on a whim just to get the page started. I was sitting in a hotel room in Manchester the night before my consultation, I couldn’t sleep and was awake the whole night. I couldn’t think of another name for it. I had every intention of changing it when I was in a better mindset and able to think more clearly but I never did and it has stuck with people now.”
Lesley says that she is often buoyed by the support of online followers.
“I do get quite a lot of messages from different people,” she says. “Those who just want to say hello and others who are facing or living with a cancer diagnosis themselves.
“It is lovely to be in contact with others in similar situations as they are the people who understand you and you understand them. A lot of people say how strong I am but the truth is I don’t have a choice. I didn’t ask for this, it’s not something I factored into my life goals, but here it is and has to be dealt with.”
The young mother says that it’s her family who are ultimately the ones who give her the strength to keep going.
“What carries me through this journey is my family,” she says. “It absolutely breaks my heart when I look at my children and think that they will be left without a mummy.
“No child should have to grow up without their mummy. I try to not read too much into the statistics.
“You have to live in hope that you will be the one that defies them. I am a wife, a mother, a daughter, an aunt, a niece and a friend so I’m kept busy and I don’t have time to sit and dwell on things. I am a very positive person who doesn’t like to lie down in the face of a challenge, I try to take things on the chin. I’ll keep going for as long as it takes and try anything.”
Summing up her approach to life now, Lesley says: “My hope for the future is to live as long as I can. To be able to have the strength to carry me through it and be fortunate enough to try new treatments.
“I want to create as many good memories with my husband and children as I can. Things don’t always go to plan and I find myself having to cancel more times than enough which is why we sometimes just act on impulse when times are good, like booking a holiday and going the next day.”
And she offers this advice: “You’ve got to get up, dress up and never give up. Remember to live for the moment — life is not a trial run, live it to the full.”
Follow Lesley on Facebook at Terminally Fabulous Darling
Belfast Telegraph Digital