Exclusive | CBMR Science Platform

Nicky Greenhalgh discovered in 2014 that she had a follicular lymphoma. She refused to accept the diagnosis as a death sentence. Three years later, helped the Facebook’s vice president, Nicola Mendelsohn, to face the disease. Today, Nicky runs the “Living with follicular lymphoma” group, one of the largest online communities of lymphoma patients. She believes that her story can inspire others in the same condition, so she decided to share it with us. 

Read the testimony and the interview, in exclusive, for CBMR Science Platform

“My name is Nicky and this is something I’ve been meaning to do for some time. I want to tell my story and record my journey for my kids and my family so whatever happens to me this will be there as hopefully some kind of comfort. I also want to help others on similar journeys because that is my passion, to help people.

Four years and 1 day ago I was living my life with my wonderful husband and two adorable kids. It wasn’t an easy life. I was always putting everyone else ahead of myself and I was burning out. But on this day four years ago and 1 day I received a phone call from a Haematologist who told me I have Lymphoma. My first question was “Is that cancer?” to which he answered “Yes”. That was the day my old life died and a new life had begun. To be honest I don’t like to think of my old life. It was stressful and draining.

It all started when I found multiple lumps on my neck and was sent for a fine needle biopsy. I honestly thought it was something like glandular fever and cancer hadn’t even entered my mind.

The day I was told I had cancer is a blur.

I remember my husband getting on the internet to research and subsequently banning me from going on the Internet. He was a mess for at least 2 days. I was just stunned and didn’t know what to think. I didn’t understand at the time but my life was about to take a completely new direction.

Next up came scans, a neck disection and a bone marrow biopsy and it was confirmed that I had Stage 4 Grade 2 Follicular Non-Hodgkins Lymphoma. This is an incurable blood cancer.

It was so far advanced that I was told I had to commence treatment immediately and was recommended for a medical trial called Hot MabThera. My Haematologist at the time told me my prognosis was around 10 years with treatment which I felt I should be greatful for but at 32 years old my youngest child wasn’t even a year old.

I spent many nights just crying in my husbands arms. I had never been so scared in my whole life.

I started treatment which involved me being injected with Radioactive Iodine and was placed under house arrest for 10 days. I stayed away from my family for two weeks just to make sure they were safe. I was also put on an intravenous drug called Rhituximab weekly for 1 month and then every 3 months for a year.

It was during this time that I decided I was not going to lie down and take it. I went on a mission to research every natural cancer curing technique I could find. I tried all sorts and met so many amazing cancer survivors along the way. It helped me stay mentally strong and feel positive that if I could just keep my body toxic free and manage my deficiencies I could live a long and fruitful life with my loved ones. That is all that mattered to me.

I had many side effects from the treatment including many mouth ulcers, geographic tongue (my tongue was smooth as my tastebuds all moved to the edge of my tongue and lost my sense of taste) and many bad days of fatigue and nausea. My platelets dropped so low I required a playlet infusion. At that point I decided to change Haematologists and found the wonderful Dr David Joske at Sir Charles Gardiner Hospital in Perth. He agreed to take me on as his patient and I am forever grateful.

I had my last Rhituximab infusion on 12th February 2015, almost 1 year to the day I got that phone call. After my treatment ended I crumbled mentally. I think it was partly because I knew it was going to return at some point and I felt like a time bomb. I cried most days and the part that makes me cry when thinking about this time is how it affected my daughter who was only 6 years old at the time. She could see my sadness and that year in her letter to Santa she wished for Mummy to be happy again.

I searched the Internet but couldn’t find anywhere I could really connect with anyone.

I decided to start my own Facebook group and named it “Living with Follicular Lymphoma”. Slowly people from all over the world started to trickle in and I was able to relate with these people. Together we formed a community and I finally felt the strength to get on with my new life living with this disease.

I continue to gradually make major lifestyle changes which I feel are going to help delay further treatment as long as possible.

In January 2016, I was contacted through Facebook messenger by a lady called Nicola Mendelsohn who explained she had recently been diagnosed with Follicular Lymphoma and really liked my group. She said that she worked for Facebook and would like to use her position to help me grow the group and help more people around the world living with this disease. At first I was sceptical and decided I better do some research to find out who she is. It turns out she is a Facebook Executive, Vice President for Europe, Middle East and Africa. I was stunned and grateful to her for reaching out to me.

Over the last 12 months her input has had an amazing impact on the group helping thousands of people around the world. She has hosted live Q&A sessions with some of the most highly respected Haematologists around the world. We are sharing up to date research and even medical trials in our group.

In December 2017, Nicola contacted me to invite me to London to meet her in person and attend a Facebook Community Summit so I can learn to be the best possible administrator I can be. I was joined by over 300 other Admins from all over Europe and had a once in a lifetime experience.

I am now currently on my way home from London taking with me a rare insight of which I intend to share with other Facebook Community builders in Western Australia.

I’m really not sure which direction my life will go from here but I intend to keep learning and sharing but most of all I intend to live life to the absolute fullest.

I still have my moments but now more than ever I am living rather than just existing.

Read the complete interview of Nicky Greenhalgh here.