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‘There were tumours everywhere in my chest’: She battled blood cancer and built a foundation to help patients

Diagnosed with Stage 4 follicular lymphoma at the age of 45, Meta's Nicola Mendelsohn overcame the darkest moments of her life, fought back and now helps others through her international Follicular Lymphoma Foundation and a Facebook support group.

‘There were tumours everywhere in my chest’: She battled blood cancer and built a foundation to help patients

“I cried most of the weekend. On Monday morning, I vowed to myself … I wasn't going to allow negative feelings to take over me. I would approach each day with joy and gratitude,” said Nicola Mendelsohn, a follicular lymphoma survivor. (Photo: Nicola Mendelsohn)

A social media honcho and mum-of-four, Nicola Mendelsohn’s life was in full swing in 2016 when she unexpectedly discovered a pea-sized lump at her groin while showering.

She called a girlfriend, a doctor, who arranged for her to see a specialist in London, United Kingdom, where she and her family were living then. “He thought I was fine. I was leaving and literally had my coat on when he said, let’s do a scan,” recalled the 52-year-old, who is now based in New York, where she is Head of Global Business Group at Meta.

The scan came back and there were with tumours everywhere in my chest area.”

It was Stage Four follicular lymphoma, or non-Hodgkin lymphoma, a cancer that affects the lymphatic system, part of the body’s immune system responsible for fighting infections and diseases. This disease typically affects people over the age of 60. Mendelsohn was only 45.

BREAKING THE NEWS TO HER KIDS

“The weekend I was being diagnosed was the worst weekend of my life. I was trying to find out what it could be because they didn’t know what it was to start with,” she said. “You think of all the worst things … if you're going to die, and what will happen to the children….”

“When we had all the facts, my husband and I sat down all the children together in our kitchen and started to tell them what had happened. I didn’t look ill so it was a big shock,” Mendelsohn told CNA Women when she visited the Meta office in Singapore late last year. Her kids were 11, 14, 18 and 20 at that time.  

Mother-of-four Mendelsohn said that telling her children about her disease was one of the most difficult moments of her life. (Photo: Nicola Mendelsohn)

“It was very, very emotional. And I literally couldn’t get the words out physically. I’ll never forget that. And so my husband took my hand and sort of explained it to the children. And it was a horrible thing to see their faces and how they reacted.

“Then Zach, the youngest, turned around and asked me if I was going to die. And that was a really hard moment – to see your little boy changed in a moment,” she recalled.

“I said to him, ‘I’m going to try my best not to’.”  

FIGHTING NEGATIVE THOUGHTS

Mendelsohn’s doctors told her that for her cancer, it didn’t matter if she sought treatment early or late. “It doesn’t change how long you’re going to live,” she explained.

So she waited 18 months and finally had chemotherapy and immunotherapy in 2018 when the cancer began growing around her kidneys. 

On that first day of chemotherapy, and the three days after chemotherapy, Mendelsohn continued working. But on day four, five and six, the side effects hit her really hard.

“This was Friday, Saturday and Sunday. I didn’t want to eat. I had no energy, I was drained and couldn’t do anything. I cried most of the weekend. I just thought negative thoughts after negative thoughts,” she said.

“On Monday morning, I vowed that I was never going to do that to myself again – I wasn’t going to allow negative feelings to take over because that’s not who I am. I would approach each day with joy and gratitude,” she said.

The social media honcho worked through chemotherapy. “If I had nothing else to think about, my mind would go to bad places,” she said. (Photo: Nicola Mendelsohn)

With that spirit, Mendelsohn braced herself for 14 sessions of chemotherapy over six months. Due to her low immunity during chemotherapy, she took measures to protect her health.

“We had the hand sanitiser and masks for people when they came into the house. This was before the pandemic,” she said.

Even though she had the opportunity to take time off work, Mendelsohn consciously chose to continue working. “If I am able to live my life how I want to, that’s what I want to do,” she said. “And what that first weekend taught me was if I had nothing else to think about, my mind would go to bad places.”

“I was doing remote work before remote work was a fashion,” she added. “So much of my job was jumping onto aeroplanes, travelling, meeting people face-to-face and addressing large crowds. But I couldn’t do any of that. I did everything from my computer for those six months.”  

Mendelsohn said she grew personally and professionally during this period. She spent more time doing strategic work within Meta and worked closely with engagement groups such the company’s Women’s ACT group that advocates for equality, justice, empowerment and support, as well as its differently abled group.

SUPPORTING OTHERS LIKE HER

Mendelsohn also leveraged her position to create powerful connections for others suffering from follicular lymphoma.

When you find out you have cancer, the first thing people (do is) … introduce you to somebody else who has cancer. But in truth, my cancer is very different to someone that has breast cancer or another cancer – the treatments are different, the mental journey is different, everything is different.

“And so you really want to learn from people who are the same as you, and who are going through the journey that you’re going through,” said Mendelsohn.

Mendelsohn (fourth from left) has been helping to grow the Facebook group Living with Follicular Lymphoma to support patients. She also founded the Follicular Lymphoma Foundation to research treatments and cures. (Photo: Nicola Mendelsohn)

She discovered a small Facebook group Living with Follicular Lymphoma with a few hundred members. She connected with the woman running it and worked with her to grow the group to more than 10,000 members from all over the world.

“Every time I did interviews, I would talk about the group and see more people joining the group. And as the group became more successful, doctors started to find out about it and would tell their patients,” she added.

It has since become an incredible support resource for patients. “It’s amazing to see how the group has supported each other through difficult challenges,” she said.

“There’s an amazing man, Barry, who used to write songs for people in the group. Five years ago, a very big hurricane was coming to Miami. He said to the people in the group that this would be the last time he would write because he lived in a shack and his house would not survive in the hurricane.

“One of the people in the group who lived not too far away said to him, come and live with me, I will give you a home during the hurricane. I thought that was very special,” she said.

Mendelson never used to exercise before her diagnosis but today, she exercises and goes for walks regularly. Here, she is attempting goat yoga for the first time. (Photo: Nicola Mendelsohn)

“I’ve seen other people who are not fortunate to have family or someone to take them to the hospital for treatment, and other people (within the group) that are at the same hospital would say, I’ll sit with you, I’ll hold your hand as you go through this treatment.

“So you really see the kindness of strangers – the only thing they are united by is the common cancer that they have,” she added.

“Sometimes, people just put out a message to say I'm having a hard day, nobody understands, and you’ll have 200 people putting a lovely message of support.”  

LIVING A LIFE WITHOUT REGRETS

Mendelsohn’s cancer is now in remission, and she only goes for check-ups twice a year. However, she noted that the cancer still exists on a microscopic level.

“It’s a rare cancer so we don't have the devices to be able to track it,” she said. “I think the challenge with living with an incurable disease and a disease where there isn’t much research done is you don’t know when it’s coming back.”  

That is why Mendelsohn and her husband set up the Follicular Lymphoma Foundation to advance research on treatments and cures.

“I'm somebody who has always practised living a full life as best as possible… All of our time on this planet is short, right?” said Mendelsohn. Here, she is attending Six The Musical on Broadway in New York City. (Photo: Nicola Mendelsohn)

Mendelsohn said that for some, getting a cancer diagnosis sometimes leads them to change things in their lives – their job, partner or even the country they live in. 

“That wasn’t me. I felt very grateful to have the life that I have, to be surrounded by a loving family and have a job that I love. So I didn’t make any of those big monumental changes.

“I'm somebody who has always practised living a full life as best as possible. I always had the feeling of never wasting an opportunity, always trying new things and experiences, making sure that I was with my family and my friends and making memories.

“All of our time on this planet is short, right? So I think (this diagnosis has) made me even more grateful for the life that I have,” she said.

CNA Women is a section on CNA Lifestyle that seeks to inform, empower and inspire the modern woman. If you have women-related news, issues and ideas to share with us, email CNAWomen [at] mediacorp.com.sg.

Source: CNA/pc
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