BETTER TOGETHER

For Rachel Pullen, seeing both her sons start university was a dream come true. “For a long time, it was something I never thought I’d get to witness, so I am eternally grateful to be here enjoying life, looking forward to the future and making the most of every day.” Rachel’s battle with lymphoma – a blood cancer that affects white blood cells called lymphocytes – began when she was just 11 years old, when she discovered a large lump in the nape of her neck.

“My mum took me to the GP, who referred me to Alder Hey Children’s Hospital in Liverpool for some tests. They showed I had Hodgkin lymphoma, which is a cancer that develops in the lymphatic system, and I was started on a cycle of chemotherapy and radiotherapy. It was my first year of going into secondary school, so I had two days in my new school then was off again having radiotherapy. I spent a lot of the first year working from home and catching up on the lessons I’d missed, which was really difficult for me.”

Following her treatment, Rachel had yearly phone calls with the hospital. “Hodgkin lymphoma has a greater survival rate than non-Hodgkin, and I thought it was a closed chapter. I didn’t in my wildest dreams think it would come back or in a different form.”

At the beginning of 2017, after many years in remission, Rachel found a lump under her arm. “I was concerned given my previous history. I had also been experiencing night sweats, which I had presumed were associated with the menopause. I decided to get things checked out by my GP, who referred me to haematology. They initially thought I had a virus as the results of my blood tests looked fine, so I was told to come back in six weeks, but as time went on, I was feeling more unwell.” Rachel was given a biopsy, which revealed she had follicular lymphoma (a slow- growing type of non- Hodgkin lymphoma), grade 3A, stage 4B.

Rachel was given six cycles of chemotherapy, then put onto a maintenance therapy called Rituximab. “I was supposed to have that for two years but after only ten months, in November 2018, I noticed the night sweats were coming back and I found two lumps – one under my right arm and the other in my groin. A further PET-CT scan and biopsy confirmed relapsed follicular lymphoma.”

In April 2020, Rachel’s health began to deteriorate quite rapidly. “I was short of breath and was struggling to walk due to pains in my legs. Another PET/CT scan revealed the lymphoma had become more widespread, and a biopsy showed the follicular lymphoma had transformed into stage 4B diffuse large B-cell lymphoma (DLBCL) – a common and fast-growing type of non-Hodgkin lymphoma – which was behaving aggressively.”

In November 2020, Rachel attended the specialist hospital where a machine removed the cells that were going to be sent to America to be genetically modified, then in February 2021 she received her new cells. “I was given a PET/ CT scan at three months then six months post CAR-T cell therapy, which were clear, and I have thankfully now been in remission for four years. As CAR-T is such a new therapy, they won’t say it’s cured until a certain time and will follow me through for 15 years. However, I don’t think about what will be now and just focus on the fact I’m so lucky to be here.

“The amazing support from my family and friends has given me hope and helped me to keep going when times are tough, and I also attend a monthly group meeting created by Lymphoma Action, which is a great source of support.” Rachel first heard about the charity Lymphoma Action from some leaflets she was given after her initial diagnosis.

“I went on their website and read lots of information about the condition. Then after the first lot of treatment I did one of their Live your Life workshops, which are one-day events to support people at the end of lymphoma treatment or when on active monitoring by connecting them with others in a similar situation and helping them develop self-management strategies. It was so beneficial and gave me ideas for what I could do for fatigue, and tips for healthy eating and exercise. However, the best thing was being in a group of people going through the same thing who I could talk to. I also attended a Lymphoma Action conference after the first lot of treatments, which was really helpful and informative. They did sessions on wellbeing and talks on all sorts of things, and it was there that I first heard about CAR-T therapy.”

After the stem cell transplant failed, Rachel and her husband decided to go to a Lymphoma Action support group locally. “I met people who were in a similar situation, and it was great to feel like I wasn’t on my own. Hearing other people’s stories also gave me hope that I could get through this. It was good for my husband too, as he often felt quite lost and helpless, especially when I was going to hospital appointments on my own.

“After Covid, a lot of the support groups went online, but we continued to meet monthly in person and started managing our local group ourselves. It’s such a positive environment and we love getting together to chat and socialise.

“Throughout my journey, my family and I have turned to Lymphoma Action as an excellent source of information and reassurance, and it is great to know they are always there if I need their support. The information they provide is up-to-date and thorough, which helps you stay informed and empowered to manage your symptoms and condition and live well.”

FUNDRAISING TARGET: £23,400

• Lymphoma Action offers support and information to people affected by the complex blood cancer lymphoma, which is the fifth most common cancer. It also aims to raise awareness of lymphoma.
• The money raised in the Candis Big Give will help to fund the charity’s helpline, which is a vital source of support for people with lymphoma. The helpline gives people the opportunity to call, email or live chat with someone and ask all the questions they need to or share their thoughts and feelings with someone who can just be a listening ear. It can be a lifeline particularly after a recent diagnosis and is also available to family and friends of people with lymphoma.
• The charity has a very experienced helpline team who can provide medically reviewed, up-to-date information; signpost to other services or the charity’s own services; and provide emotional support.
• The helpline helps people to understand they’re not alone in their experience of lymphoma and that there’s a wealth of information that can empower, support them and enable them to face their challenges with confidence.
• Visit lymphoma-action.org.uk to find out more.