Follicular Lymphoma. You know, that blood cancer that affects around 1 million people globally. The disease that often has no visible symptoms. The cancer that hangs like a life sentence over the those who have it, even though they can look as healthy as you and me. Still no idea what I’m talking about? Don’t worry. It’s not you. It’s the cancer.
Follicular Lymphoma is the incurable cancer we’ve all never even heard of. The one that wrecks lives, renders those living with it powerless. And one previously believed too rare to be worthy of a cure.
That is, until Nicola Mendelsohn, the 49-year-old super boss, VP of Facebook EMEA, mother of four – and for full disclosure – my sister-in-law, was diagnosed with it three years ago, after finding a pea-sized lump in her groin. “I didn’t have any other symptoms,” she recalls. “I was busy living life, busy with work, busy with the kids. I called a friend who’s a doctor and she said, ‘Lumps come and go on women. If it’s still there in three weeks time, come and see me.”
It was still there, so Nicola was sent for a CT scan. “After the scan I went home and didn’t think anything else of it, until a few hours later, when I saw I had a lot of missed calls from the doctor who’d done the scan, but also my friend. I remember telling my husband Jon, I think this is bad news. My friend called and asked if I’d spoken to the other doctor. When I said no, she said, ‘I’m coming round’. She told me they’d found tumours up and down the inside of my body.”
As it was a weekend, no further tests could be done. “We decided not to tell anyone, until we knew exactly what we were dealing with. And it was also the weekend of my eldest son, Danny’s 18th birthday. It was the worst weekend of my life. I wasn’t thinking rationally, it was horrendous. I thought of all the worst things that could happen. I lost half a stone in weight from worrying, and not sleeping and crying and trying to put a facade of normal on.”
Within a week she was diagnosed with non-Hodgkin Follicular Lymphoma, the most common of the non-Hodgkin cancers, but one which most people can barely pronounce. “I was lucky to be diagnosed very quickly, which is very unusual for a blood cancer,” she recalls. “It can often take up to three years, with the person getting more sick. Especially for women, the symptoms often get passed off as, oh you’re tired, you must be too busy, or, oh you’re getting hot sweats at night, it must be the menopause. But sometimes, these symptoms can actually be blood cancer.”
“Telling my children was very hard,” she says, with tears in her eyes. “It’s difficult even retelling it now. It was a Sunday morning, eight days after I’d been diagnosed. We got the kids together. I was very emotional, I could barely get my words out. Jon was very helpful. The kids just looked so sad. Zac, my youngest, who was 11 at the time, looked at me and said, ‘Are you going to die, mum?’ My response was, I’m going to try my very best not to. But I didn’t lie to him. All the advice says you should be as honest as possible with your children.” She was also extremely honest with her friends, family, and also, her employer, Facebook.
The diagnosis was naturally shocking and devastating for everyone who knew her well, of course, but also for those who knew of her through her work. For a business woman with such a high profile position to be so open about living with an incurable cancer is unusual.
I will never forget the day Nicola came to my home to tell me, and my husband, her brother to tell us her news. We were shell-shocked. But she led the way. She was tearful but remained strong, focused and most of all, positive. Where did she find that strength from? “I think I found the most support and strength from getting on with my normal life. Just getting on and doing the things I’ve always done.”
As her sister in law – we wondered if she’d take a step back, slow down at work. “That was never going to happen” she laughs. “Facebook were incredibly supportive. They told me to do whatever I needed to do. Take as much time off as I needed. But for me taking time off would have been the worst thing for me. I’d just sit at home thinking about my own mortality. I wanted to keep working as much as I possibly could. So they’ve treated me pretty much as normal because they’ve taken their cues from me.“
Nicola expected to head straight into chemotherapy, but was advised against it at the time. “Initially, my mindset was all around, I’ve got to beat this. When you hear about cancer, you hear about cutting it out and blasting it, and then you’ll get better” she says. “But the more I researched into the course of initial treatment, I discovered something called ‘watch and wait’. Which means not doing anything at all and letting the doctors assess the progression of the cancer. At the point they think you’ll need treatment, then they’ll suggest it. There is no change in the overall life expectancy if you treat now, or treat in the future, it doesn’t make any difference.”
Nicola managed to go on ‘watch and wait’ for 18 months, by which point some of her tumours had grown dangerously close to her kidneys, and there was a concern it would give her kidney failure. “So I started treatment.” This, she will admit, was one of the hardest moments for her. “I’d created a false expectation for myself, that I wouldn’t need treatment for at least two years, so it was a blow.” For the past year, she has undergone fourteen rounds of chemotherapy and is currently on a two year maintenance therapy, which involves immunotherapy every eight weeks.
One of the biggest ironies around this, is that despite this diagnosis, and the chemotherapy, Nicola looks better than she’s ever looked in her life. She doesn’t look ill. She isn’t living her life as an ill person, which is what, for some, makes this an invisible cancer. Thanks to a much healthier lifestyle, that has involved cutting out sugar from her diet – she used to eat more sweets than anyone she knows – reflexology, acupuncture, mindfulness and exercise – she looks incredible. “I did everything I could to make my body strong. I realise I’ve been very lucky in that I haven’t suffered from symptoms and also, didn’t react as badly as others to the chemotherapy, I didn’t lose my hair. I read a top tip that if you bought your wig before you hair fell out it would be a nicer experience. My hair thinned, but I’m very happy my wig is still hanging in my wardrobe and I’ve never had to wear it. But I know the same can not be said for everyone who goes through the same treatment.”
As well as working her way through her diagnosis, she found an unexpected source of strength and support, also through Facebook. “About three months after I was diagnosed, I thought, I wonder if there’s a Facebook group for Follicular Lymphoma. I searched and lo and behold there was one called Living With Follicular Lymphoma. It had recently been set up by a woman called Nicky who lived in Australia. It had a few hundred members. I contacted her and said, I think I can help. The group now has over six thousand members and is honestly the single best place for advice and support. It’s a place where people go to rant and know everyone in the group will one hundred percent understand what you’re going through.”
Three years on from her diagnosis, Nicola has done what she always does with other areas of her life – tackled it head on. She has decided to find a cure for her own cancer. “I decided if not me, then who and if not now, then when. So yes, the Follicular Lymphoma Foundation is now a thing. We have to raise a lot of money and also, raise awareness. So Follicular Lymphoma, Follicular Lymphoma…please remember those words.”
The word inspiration is bandied around a lot these days, but really, to watch someone you love and admire remain so strong in the face of an incurable cancer, is truly incredible to witness. I will always be in awe of her ability to stay positive and focused and to keep perspective, no matter what. How does she do it?
“You know, I’ve always felt very grateful for the life that I have. The family I have and the friends and opportunities that I have. I have always tried to squeeze into every day as much as is humanly possible. That’s how I love living my life and nothing has changed. I saw the darkness of what happens when your mind starts to wander, it’s so easy to go down that spiral of what if. It’s hard to get out of that pit of despair once you go down it. It made me physically ill doing it. I’m not going to do that. However many weeks, months years I have left, I’m going to live my best life possible. And I’m going to make it my mission to find a cure for Follicular Lymphoma to help others who are diagnosed with it now and in the future.”
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