The head of Facebook in Europe has revealed that she has incurable cancer in the hope that she can raise awareness of the disease and prompt research into a cure.
Mother-of-four Nicola Mendelsohn, 46, was diagnosed with follicular lymphoma more than a year ago and has decided not to “watch and wait” rather than treat her tumours with chemotherapy.
Facebook’s vice-president for Europe, the Middle East and Africa has joined forces with other sufferers on the social network to raise the profile of the common but little known about cancer and in the process she said it has “stopped all of us feeling alone with this disease”.
Revealing her diagnosis for the first time, she wrote on the social network: “I often talk about how people can seize their own destiny, so it’s tough to be reminded that there are things you can’t control.
“Just over a year ago I was diagnosed with follicular lymphoma – a slow developing cancer of the white blood cells that’s not rare and that has no cure. It is quite an unknown disease which is why I’ve decided to raise awareness by telling my story in the hope of driving research and a better understanding of it.”
She says that the diagnosis has not changed her as she has always been an optimist who if anything is “even more grateful” for what she has been given.
When she was diagnosed in November 2016 she was fit and had not been feeling tired or unwell, but had noticed a lump on her groin which she discussed with a GP who referred her to a gynaecologist, who in turn sent her for a scan.
It showed she had “tumours up and down my body” but, as it was a Friday afternoon, the tests she needed to tell her more could not be done until the Monday.
“I had a horrible two days trying to process it. It was worse that I didn’t find out all in one go. I couldn’t stop crying that weekend, grieving for the life I’d had before,” she wrote in the Sunday Times magazine.
Further scans and biopsies showed she had follicular lymphoma, a cancer she had never even heard of.
When she and her husband Jonathan, the Labour Peer, sat their four children – aged between 13 and 20 – down and explained her condition her youngest, Zac, asked: “Are you going to die?”
“That’s always the thought that comes into your head when you hear the word “cancer”,” she wrote. ” It is not a conversation I could ever have imagined having with them, not even in my worst nightmares, until it hit me in the face. It was the hardest moment of my life.”
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Lord Mendelsohn, who last month lost his place on the Labour front bench after attending the all-male Presidents Club dinner, has been “amazing, my absolute rock”, she said.
It is the most common type of slow grown Non-Hodgkin lymphomas, but is usually found in men over 65.
Sixty percent of people with lymphomas live for more than 10 years, but for a woman in her 40s “it doesn’t feel acceptable”, Lady Mendelsohn said.
She decided to watch and wait as there is no change in life expectancy depending on when treatment starts and now has regular scans and blood tests. If the tumours are growing she will begin chemotherapy and radiotherapy.
“My decision might well have been different if there were a cure for follicular lymphoma, but as it stands in 2018, there is none,” she said.
It is not “high-profile” and therefore doesn’t receive the same level of research funding as other cancers, she said, and therefore she is trying to raise awareness and investment in the search for a cure.
She has already been looking to Facebook for support and has joined and helped to grow the group Living with Follicular Lymphoma, which now has 3,500 members who support each other.
She wrote: “It is the largest collection of patients living with follicular lymphoma that has existed. Lately we’ve attracted a number of medical researchers and doctors.
“They’ve told us they see people share things in the group that they might not ask their doctor or a family member. They have benefited from reading patients’ insights and perspectives on the side effects of treatments.”
She has created a logo to unify support and has hosted Q&As with world leading experts to open up new channels of communication.
Those in the groups are now planning off-line meet ups, showing that the two worlds can merge, and one user was even offered a home with another sufferer when he feared his house would be destroyed by Hurricane Irma.
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