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Home / Lifestyle

'Parents are not supposed to have cancer': Facebook boss Nicola Mendelsohn on life with an incurable diagnosis

By Miranda Levy
Daily Telegraph UK·
18 Nov, 2019 09:03 PM7 mins to read

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Vice-President for Europe, the Middle East and Africa for Facebook Nicola Mendelsohn. Photo / Getty Images

Vice-President for Europe, the Middle East and Africa for Facebook Nicola Mendelsohn. Photo / Getty Images

The end of November, 2016. Nicola Mendelsohn - Facebook's most senior executive outside the US - was at a Bar Mitzvah in North London. All around her, people were dancing, chatting, enjoying the Jewish 'coming of age' party.

But Mendelsohn, sitting at a table with her husband and two youngest children, was deeply distracted. "I was in a fog," she says. "On the surface, the world looked exactly the same as it had 48 hours ago. I don't know how I held it together. Because the rest of that weekend, I had been crying, googling, telling myself: 'I am going to die.'"

That Friday, Mendelsohn had gone for a scan on the advice of a GP friend, following the discovery of a painless lump in her groin. She hadn't thought much of it, and back at work, had switched off her phone. When she turned it on again that evening, she discovered tens of 'missed calls', from her GP Lisa, as well as the consultant she had seen that day. "When I saw the notifications, it was a Sliding Doors moment," says Mendelsohn. "I could feel the life draining out of me. I was shaking, I had a pit in my stomach. I called Lisa, and she told me she was coming round immediately."

Her GP then broke the news to Mendelsohn that the scan revealed tumours up and down her body, but no-one knew precisely what was wrong. "We couldn't do anything over the weekend, because there were no staff available to operate the PET scan machines," she says. But by the middle of the following week, Mendelsohn, then 45, discovered she had Follicular Lymphoma, a blood cancer most common in people over the age of 65. This terrible news was tempered by the discovery that Mendelsohn is one of the 85 per cent of sufferers who have a slow-moving form of the disease. Not enough is currently known about the condition, but people with this strain live an average of 20 years. It remains incurable. But that could be about to change.

Today Lady Nicola Mendelsohn, CBE, is spear-heading the launch of the Follicular Lymphoma Foundation, which plans to raise close to £15.5 million ($31.3 million) in the next three years. This will go towards research for new treatments, plus support and information for those affected. But in Mendelsohn's words, her aim is: "for the Foundation not to have to exist. We are looking for a cure."

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During the weekend waiting for her own diagnosis, Mendelsohn last half a stone. "The waiting was the worst thing," she says. "As was walking through the cancer ward, and seeing people who were so very ill, I felt as if I was looking at my own future. As if I was on a conveyor belt. Once I actually found out what was wrong, I wanted to go into practical mode: 'let's smash it, let's cut it out.'" But Mendelsohn's strain of lymphoma did not lend itself to aggressive treatment. The advice was to simply 'watch and wait.'

What couldn't wait, of course, was telling her immediate family. She sat down to discuss things with her husband, the lobbyist and former labour politician Jonathan (aka Baron Mendelsohn of Finchley.) "Our son Danny had his 18th birthday the following Saturday," she says. "Jon and I agreed to wait until after the party. We felt it was important Danny had that celebration without having to worry about me. Parents are not supposed to have cancer."

The children - Danny, now 20, Gabi, 22, Sam, 17, and Zac, 14, eventually convened around the table with their mum and dad a few days later. "The older kids had picked up that something was wrong, because I was at home more, dressed differently," she says. "I decided not to sugar-coat it. I told them what was wrong. I said that if they any questions, they could always ask." Understandably, everyone was emotional. "We cried a lot," says Mendelsohn.

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Nicola Mendelsohn didn't consider taking time off work after her diagnosis. Photo / Getty Images
Nicola Mendelsohn didn't consider taking time off work after her diagnosis. Photo / Getty Images

"Zac, my youngest, asked: 'are you going to die?' I told him I was going to do my best not to, that I was going to give it my best shot. My other kids told me: 'we're here for you,' in various ways. There were lots of hugs, which just made me cry even more.'" As for Mendelsohn's husband Jonathan, she says simply: "He was been my rock. He always has been. He is just always there."

Then came the task of informing everybody else. Her mother asked: "is this a joke?" before immediately moving into practical mode. Mendelsohn's superior, Facebook's Chief Operating Officer Sheryl Sandberg, was no stranger to personal tragedy: her husband Brian had died suddenly of a heart condition in 2015. "Sheryl was very supportive in a pragmatic way: she told me not to waste time on 'secondary (ie non-essential) worrying'".

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Once she had told her immediate family, Mendelsohn says she was "open" about her diagnosis. "I didn't broadcast it, but had one-on-one conversations with most people," she says. "But of course, news travels fast." People had a range of responses, all positive. "Everyone was very caring and kind. There were messages of love and support, people asking how they could help. Some people did that sort of 'head tilt' when they were lost for words, others simply offered: 'I don't know what to say.' Sometimes I found myself comforting people. Cancer touches everyone." Never once, says Mendelsohn, did she think: 'why me?' or get angry.

Did she consider taking time off work, to spend what precious time she had left with her children? "No," she says. "I get so much energy from my work. It's a huge part of me. Personally, I don't get the artificial divide between work and life, this 'balance' everyone talks about. Besides, cancer changes so much, I wanted to remain in control of something."

Mendelsohnwas fortunate not to need any treatment for the first couple of years post-diagnosis. But in June 2018, she embarked on a course of chemotherapy and immunotherapy because she had tumours growing around her kidneys, which untreated could have led to kidney failure. The treatment was a success. "I'm lucky," she says. "The cancer itself has never made me feel ill, and while chemo is never pleasant, it didn't hit me that hard. Apart from the days of my treatments, I never took any time off work. My company offered sick leave, but I preferred not to take it. That worked for me, which is not to say it's right for everyone. " Her only concession was a break from international travel. "My doctor said: 'give me your diary for the next six months."'

Mendelsohn is now officially in remission, but knows that her illness could 'transform' into the more aggressive form at any time. She isn't overly sentimental about her future, she does not have a 'bucket list', nor plans for any special celebrations, such as her 50th in 2021. Instead, she says: "My life is all about treasuring moments. "I appreciate the specialness of every day."

At a glance: Follicular Lymphoma (FL)

Follicular lymphoma is a cancer of the lymphatic system, involving the white blood cells that fight infection

Some people are diagnosed after discovering painless lumps in the armpit, neck or groin. Others have symptoms including weight loss and fever. A few have no symptoms at all

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FL is diagnosed via blood tests, scans and biopsy

Depending on the variant, FL is treated with antibody therapy, radiotherapy chemo-immunotherapy. Other patients have 'active monitoring' (the 'watch and wait' approach

Around 1,900 people are diagnosed every year. FL can occur at any age, but the average is 65

Source: Follicular Lymphoma Foundation

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