I was diagnosed on 1 February 2016 after what I thought were kidney stones. During an ultrasound, the doctor became concerned and arranged a CT scan. He told me there and then that I had a type of blood cancer called Non-Hodgkins Lymphoma. I was completely shocked, especially as I was on my own.
When I asked if it was curable, he said it wasn’t, but that it was treatable and to think of it as a chronic condition. I know not everyone finds that description helpful, but for me it was strangely reassuring in such an overwhelming moment.
The hardest part of my diagnosis wasn’t hearing the news myself – it was telling my two grown-up sons. I wanted to stay positive for them, even though I had no idea what lay ahead.
One thing I found difficult was being asked to choose between different treatment options so soon after my diagnosis. Looking back, I just wanted someone to tell me what was best. Ten years later, thanks to everything I’ve learnt through the FLF, I’d feel much more confident being involved in those decisions if I ever needed treatment again.
I also remember my first chemotherapy appointment because our car broke down on the way! My husband stayed with the car while I took a taxi to the clinic. It wasn’t the start I’d imagined, but the nurses were wonderful. Chemotherapy was tough, but thankfully it worked, and I’ve now been in remission for 10 years.
The first few years were not easy, but as time has gone on my lymphoma has gradually faded into the background. Most days I don’t even think about it anymore and it certainly no longer defines who I am. When I was first diagnosed, I never imagined I would be able to say this.
The FLF community has kept me connected over the years and brought together people whose paths would never otherwise have crossed. We’ve become a real lymphoma family, supporting one another through the ups and downs of life with FL. It really has shown me that even the darkest clouds can have silver linings.
I am so grateful that Nicola brought us all together through the Foundation. Without it many of our paths would never have crossed and I’d have missed out on some very special friendships.
When I was first diagnosed, I felt very uninformed and just wanted to talk to someone who had already been through it. I found the “Living with Follicular Lymphoma” FB group founded by Nicky Greenhalgh and it became a huge source of comfort, I spent many evenings asking questions and learning from other patients.
Through that group I then met Nicky, Nicola M and a small group of patients in London. I came away feeling inspired, particularly by Nicola’s determination to help find a cure and challenge the idea that follicular lymphoma should simply be accepted as incurable. I’m so grateful to Nicky for creating the FB community that first brought many of us together and to Nicola for building on those early connections by creating the FLF. It really was the beginning of something very special.
If your thinking of joining FL Voices, I’d say just give it a try. Everyone understands because they’ve been through it themselves. There’s no pressure to get involved more than you’re comfortable with, and you may just find friendships and support that make a real difference. I certainly did.
I first met Charlotte at the London meet-up in 2018. I remember feeling so sad that someone in her late twenties was facing the same diagnosis. I had always thought of follicular lymphoma as something that affected older people, and it just seemed so unfair.
Despite everything she’d been through, she was full of energy and determination. I was so impressed to learn she had founded Lymphoma Out Loud to raise awareness of lymphoma in teenagers and young adults.
I think we clicked straight away. Over the years we’ve kept in touch, checking in on each other even if months have passed. Becoming Super Supporters together brought us even closer, and we’ve met up in London several times. I was honoured when Charlotte invited me to join her at the FLF Ball – it was a very special evening.We definitely share the same sense of humour and seem to be on the same wavelength. We always have a laugh together, which is probably why our friendship has grown so naturally.
Having a friend who understands the realities of living with FL has really helped, I’m incredibly fortunate to be 10 years into remission, so I don’t talk about my lymphoma very often these days. But I know that if I ever needed someone who truly understands, Charlotte would be one of the first people I’d call and I’d like to think she’d feel she could do exactly the same with me.
