Taking action

Melinda Schriffert, 37, from Chorley, tells us how Lymphoma Action’s support group helped her stay positive in the aftermath of her diagnosis

When Melinda Schriffert, 37, was diagnosed with lymphoma in 2019, she initially had no idea what it meant. “My biggest fear at the time was lung cancer, as my grandad had passed away from it and I’d been told by the doctor they had found something in my chest. When they said I had lymphoma, I was really relieved,” she explains. “My first thought was thank goodness, but the doctor was looking at me like I was mad. He said, ‘Do you know what lymphoma is?’ and explained it was a cancer of the lymphatic system. My heart just sank in my chest when he mentioned cancer – it’s the word nobody wants to hear.”

Melinda first started experiencing symptoms of lymphoma in March 2019 when her shoulder started to hurt. “I worked in a factory wrapping bread for schools – which was quite a physical job with bending and heavy lifting all day – and was also a runner and weightlifter, so I didn’t really think it would be anything serious. I didn’t even go to the doctor for four months.” When she eventually went to see the doctor after the pain still hadn’t gone, her GP thought she had pulled a muscle and told her to rest and take painkillers. “It was July, and I was due to have six weeks off work with my children, so they said to see how I was after that. However, by the time the summer holidays ended, the pain had got much worse and moved from my shoulder to my spine. “I went back to work but had only done a week when my partner found me crying one morning in agony. They said they had never seen me like that before and I shouldn’t be going to. work, so we went to the GP together. I requested a blood test or an MRI or something, as I knew all was not well, but they just brushed it off.”

On 16 September, Melinda started to experience numbness coming up from her toes. Over the next few days, it spread to her to her knees. “By 23 September I was completely numb from my toes up to my breasts and I couldn’t walk, so my partner took me back to the GP. They sent me to A&E, where I had a full body MRI done with dye and a CT scan. I remember one of the doctors coming to me later in the day and asking if I’d had cancer before or chemotherapy, which made me really scared. “Eventually, at about 7pm, I was told they had found a huge tumour pressing on my spine and would need to do an operation immediately to remove it. They said there were risks with the operation and I could die, but if I didn’t have it, I would be paralysed forever. It was a horrible decision to have to make and they only gave us five minutes to make it, but I decided to opt for the surgery.”

Melinda was blue-lighted to the Royal Preston Hospital, where they removed the tumour and placed four screws and plates on her spine. “I went into theatre at 9.45pm and they finished the operation at 5am, so it was a long procedure. They then sent the tumour away to Leeds to get the diagnosis, which came back three weeks later.” Melinda was told she had cancer – later confirmed to be stage four non-Hodgkin lymphoma. “They told me that as well as the tumour on the spine there was a mass on my chest and it was definitely on both of my lungs, so they wanted to start chemotherapy as soon as possible. It was a huge shock as I had felt so fit and healthy just a few months before. I also knew that chemotherapy equalled hair loss, so one of the first things that came into my mind was that I was going to be bald. I really didn’t want to lose my hair. “I had six rounds of chemotherapy, then the consultant decided I needed another three rounds of special chemotherapy as an inpatient, as this type of lymphoma can attack the brain later. In the midst of this, I also had a lumber puncture and had an epileptic seizure, which they discovered had been caused by a blood clot on my brain. There were lots of ups and downs, but eventually, my treatment ended just before the first lockdown and I came home on 5 March 2020.”

Throughout Melinda’s treatment, one thing that kept her going was the support from other people with lymphoma with whom she connected through a Facebook group run by Lymphoma Action. “I had heard of the charity when I first got my diagnosis as I was given a really helpful leaflet, which I read through several times. Then, after I began looking for more information and support, I came across its support group online. I started asking questions and got loads of advice. If I wasn’t sure of something I always went on there and asked, or if I wanted to have a little rant or moan, I knew people would listen and reply. It was nice to be able to speak to people going through the same thing, and the group was just amazing.

“I also started attending the charity’s online support meetings, webinars and workshops on different topics such as mindfulness, which I found really helpful for getting support, learning more about the condition and improving my mental well-being.

“Mentally, you’re not the same person once you go through something like this. You are a lot stronger, but also can be more sensitive in many ways, and I have had some really hard times. It’s so important to be able to access that support and have people to talk to when you find yourself facing those hard times, to help you keep going and stay positive.”

In May 2022, Melinda was told she was in remission and was discharged from the hospital. “I was absolutely thrilled and immediately began thinking how I could give something back, so I signed up to become a community volunteer – which involves going to talk about the charity and what it does to people in the community – and an online support group facilitator for Lymphoma Action. I also organise fundraising events and do interviews to raise awareness about lymphoma and make sure people with it know there is a charity for them. “I feel like it’s my mission to raise awareness, because lymphoma is the fifth most common cancer in the UK, but lots of people don’t know what it is. Often, when I’m out and about and wearing my Lymphoma Action T-shirt, people will ask me, ‘What’s lymphoma?’ “I think that when people are told they have lymphoma, very often they will look it up online to learn more about it, and that can be the worst thing you can do. Instead, the charity has all the information you need and a phone number and email address you can easily reach the support team on. They really do offer a lifeline and wealth of information and support from the moment you’re diagnosed for as long as you need them.”

THE CANDIS BIG GIVE LYMPHOMA ACTION INFORMATION TO EMPOWER PEOPLE AFFECTED BY LYMPHOMA

TOTAL RAISED: £13,542

Lymphoma is a complex blood cancer with over 60 sub-types and no known cause. It is the fifth most common cancer in the UK.

Lymphoma Action will use the money raised in the Candis Big Give to produce information and publications to empower people with lymphoma to better understand their diagnosis and make informed decisions about their health and care.

Its award-winning information and publications are a key part of its mission to make sure that no one faces lymphoma alone. People affected by lymphoma need clear, easy-to-read, trusted and digestible information and knowledge to help them better understand and manage their diagnosis, treatment and aftercare. Access to information about lymphoma has been shown to help people diagnosed feel more positive, more confident, more in control and less fearful.

The charity regularly reviews its information to make sure it remains up-to-date and reflects current practice. The information is approved by medical experts and reviewed by users, including its volunteer ‘reader panel’.

The information booklets are distributed to patients across the UK via medical professionals and its helpline team and they are also available to download or order from its website.

Visit lymphoma-action.org.uk for more information.

WHAT LYMPHOMA ACTION MEANS TO ME

Dallas Pounds, director of services at Lymphoma Action, tells us why she loves working for the charity

“As a nurse and having worked in haematology, I was aware of the charity and admired its work for a long time. When I decided I didn’t want to commute into London any more in 2021, I was thrilled to see a job vacancy for director of services for the charity based in my hometown of Aylesbury, and I was lucky enough to get it!

As the director of services, I sit on the senior management team and am responsible for all our support services, publications and educational resources and events. We provide a lot of services to those affected by lymphoma, including helpline services where members of our staff support people by telephone, email or live chat services, whether they’re worried they might have lymphoma, have been diagnosed or have just finished treatment and are getting back to their normal life. We also have a buddy service where trained volunteers who have experienced lymphoma talk to others going through similar circumstances, so they have someone available who really understands how they feel; online support meetings; online workshops; a Facebook support group; and lots of information available in leaflets, books and on our website. Lymphoma is a really complex blood cancer, with over 60 different sub-types and no known cause, but it’s also a cancer of a system in our bodies – the lymphatic system – that most of us haven’t even heard of and don’t know what it does. It can be doubly difficult for people to come to terms with, learning not only that they have a cancer but that they have a cancer they’ve never come across in a part of their body maybe they’ve never heard of, so it’s incredibly important that we offer the information and support to empower people with lymphoma to understand what’s happening and make informed choices about how they go forward, how they talk to their healthcare team, what treatments they might need, and also where to get support from. We really put people who are affected by lymphoma at the centre of everything we do, to help inform, support and connect them at every point of their journey.”