'These people understand what I'm going through' - Facebook EU boss on the group helping her deal with cancer
One is a mortgage broker from Australia. The other is Facebook’s vice president for Europe, the Middle East and Africa. But despite their differences of geography, age and occupation – and though they only met face to face for the first time this week – Nicola Mendelsohn and Nicky Greenhalgh share an infrangible bond.
Last weekend, Mendelsohn, the most powerful British woman in the tech industry, went public about her diagnosis with follicular lymphoma, a little-known and currently incurable blood cancer described as a “life sentence” in an article she wrote and posted on the social network on World Cancer Day.
In doing so, she also mentioned the Facebook group she had joined for those living with the disease, set up by fellow sufferer Greenhalgh on the other side of the world.
Mendelsohn (to Greenhalgh’s incredulity) had got in touch and become its “co-admin” and together the two women have been running and expanding the group since last January, forging a deep and personal connection that spans continents.
When I meet the two women this week, it’s hard to believe, first, that either has cancer; second, that they have only just met in the flesh. Mendelsohn is 46 and Greenhalgh 36; in the real world their paths would never have crossed, but they seem as comfortable in each other’s company as long-standing boon companions.
“We couldn’t have chosen two further parts of the planet [to live in],” laughs Mendelsohn, who grew up in Manchester but is now London-based. “We can only talk really late at night or really early in the morning – but it doesn’t matter because there is that closeness and intensity that we felt from very early on. It’s just a bond.”
Greenhalgh, a mother of two children aged eight and four, who lives in Mandurah, near Perth, has flown to London with her husband for the Facebook Communities Summit Europe, which yesterday brought together administrators, or admins, as they are known, of around 300 Facebook groups from around Europe for workshops, training and speeches. The day before the delegates descend, she and Mendelsohn are at the venue in the Olympic Park in Stratford, getting to know one another offline.
“It was so emotional,” says Mendelsohn of the moment the pair finally met. “I started to well up and thought, ‘I can’t do that!’.”
The wife of the Labour peer Lord Mendelsohn, and mother of four children aged 13 to 20, has said people are shocked to hear she has cancer because she doesn’t look ill. Nor for that matter does Greenhalgh, who will soon be five years into the disease.
Sixty per cent of people with their type of non-Hodgkin lymphomas live more than 10 years, according to Mendelsohn, a percentage that is rising as awareness (and funding) grows. Still, a prognosis of around a decade? Neither woman is willing to accept such a curtailment of their lives – for themselves, or their families.
Mendelsohn told her children the truth very early on, sitting them down together and explaining her condition. “Are you going to die?” asked Zac, her youngest. “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,” she wrote. “It was the hardest moment of my life.”
But she and Greenhalgh share an unshakeable optimism – along with counsel that makes their condition manageable.
“There are lots of things we can do,” says Greenhalgh. "I’ve completely changed my lifestyle since I was diagnosed. I exercise more and I now follow a vegan diet. I want to do the best I can for my body, to watch my kids grow up, see my grandkids; that’s my plan. Some people consider the condition as terminal. I do not.”
Mendelsohn adds: “We look at it more as a chronic disease. We’re both much healthier, ironically, than we ever were before. People go ‘oh, you look great, you look so healthy.’ Sort of!”
Unlike many cancers, follicular lymphoma – which, paradoxically, is neither rare nor well-known – grows slowly and can often be kept under control for many years. About 1,900 people are diagnosed with it each year in the UK, their average age 65; early treatment at this stage doesn’t appear to help people to live longer and can cause side effects.
Diagnosed in November 2016 after finding a tiny – “less than half a centimetre” – lump in her groin, Mendelsohn has opted against treatment so far, though at some point she will need a combination of chemotherapy and immunotherapy.
In common with many sufferers, she had few symptoms (common indicators include sudden weight loss, night sweats, lumps and bumps) and continues to feel well, which has enabled her to carry on working in her demanding day job, only swapping the frequent early morning flights for departures at less punishing hours.
Meanwhile, from opposite sides of the globe, she and Greenhalgh fire messages back and forth about new ideas for the Facebook group, which provides a vital forum for sufferers everywhere, as well as their carers.
“I had a lot of people when I was first diagnosed putting me in touch with people with non-Hodgkin [lymphoma],” says Greenhalgh. “But I could never relate to them because they were able to be cured and I’m not, which is why I started the group. I needed to speak to someone who was going to be living with this for the rest of their life, just like me.”
Two years later, her group, Living with Follicular Lymphoma, which had just a few hundred members when Mendelsohn found it, has now accrued almost 4,000. Some 500 joined this week alone, since Mendelsohn first spoke publicly about her illness.
“It took me a couple of months after my diagnosis to think to look for a group on Facebook, and it’s funny because I work on Facebook,” says the tech exec. “I should probably have got there a bit quicker, but I hadn’t thought of it. I was in [Facebook] groups for women in business, for book clubs and local area stuff. And then I found it and was like ‘oh my goodness, these people understand me, they understand what I’m going through.’ I think there is a difference in the way that people relate to each other that have this disease [compared] to those that don’t.”
So what do they talk about?
“You see people in the group sharing the most extraordinarily personal of things. From, their partners don’t understand them, do others feel like that? (Cut to hundreds of comments); to ‘I’m thinking about different treatments, what would you advise?’; to how you tell your children,” says Mendelsohn. “Who else would you actually ask?”
And who else could offer the emotional support those on the same path can provide? Turning to Mendelsohn, Greenhalgh says: “When you had your scans coming up and I had my scans coming up, we definitely supported each other through that.”
Tomorrow, Mendelsohn, Greenhalgh and a number other London-based group members will have their first offline get-together in the city. One sufferer from Iceland is even planning to fly in to join them.
Mendelsohn is excited at the prospect of uniting “all these people that have never met before, who’ve only ever met in the digital world on Facebook.”
While logistics won’t allow regular meet-ups with Greenhalgh, the pair plan to maintain their long-distance alliance, helping each other with the disease for the rest of their lives.
Mendelsohn has also been inundated by support from those she’s never met either online or offline, but who have been touched by her story, wishing her well. Even estranged former school mates of her oldest child, Gabi, have been in touch with the university student to tell her they are thinking of her.
“She’s been just overwhelmed with kindness from people reaching out, going ‘I met your mum at the school gates and just wanted you to know I was thinking of you.’ It’s really lovely,” smiles Mendelsohn at the demonstrable power of human connection. “People are lovely, aren’t they?”