Lymphoma Lass

The gratitude I feel for what Lymphoma Action has done for me is beyond words. While I lived like a recluse through my cancer diagnosis and treatment, my husband and I found the charity our online go-to source for information on all things to do with my cancer. Especially helpful to us was the information on what I could do to avoid infections while I was in six months of chemotherapy.

Then, as I gained my strength and wanted to find purpose in life during my recuperation, Lymphoma Action gave me just that. I read about Susie Gander receiving her Beacon of Hope Award in 2016, in part for her cartoons in aid of the charity and her creation: Perry Winkle Comic. Fabulous! I can’t ever imagine being as gifted an artist as Susie but here, it seemed to me, was a charity open to us creative types getting involved!

I suspect I’ll never be able to run a marathon, or take part in an endurance cycling event, but I can crochet, knit and generally do crafty things to fundraise. Doing this helped me to find some calm as I soldiered on (or maybe more accurately, thrashed around like a fish out of water) and tried to get through the side effects affecting my mobility. So, out of my need to find little goals in life came some periwinkle patterns (in crochet and then knit) and more periwinkles in Shrinkie plastics and made with ribbons and buttons. Giving them away for a small charity donation was great fun!

Lymphoma Action set up the webpage Crochet for Cancer, with links to the knit and crochet periwinkle patterns, alongside a video by the lovely Esther Dijkstra showing how to create the crochet version, and that was just so thrilling!

We speak in business of the completion of a task being reward enough, and that has certainly been true of the things I’ve done with Lymphoma Action. But then I got an email asking if I’d mind being put forward for a Beacon of Hope Award…. Mind? Like they’d be able to keep me away!

After an excitable application of purple nail varnish and lippy, off we went to the beautiful Fazeley Studios in Birmingham in our best togs for the event of my year: the Beacon of Hope Awards 2017!

We were greeted by the wonderful Karen Bonell, who has done so much to help patients by setting up more local support groups in the North West, and by Sarah Thorn, who coordinates the charity’s fundraising activities. We had with us the Christmas decorations I had made to hand over to Sarah, but during the wine and canapés reception, my husband kept fetching back the bag of decorations to show off to the other guests!

I got a chance to talk to a number of other members of staff. I wanted the chance to express my gratitude for all they do, and say how very impressed I’ve been with how they handle issues like complying with data protection legislation and proper financial management. I’ve seen first-hand how the charity makes the best use of its limited resources to help patients in the ways patients want to be helped. The charity has really held to its values through over 30 years of existence, including that of being “by patients, for patients”. 

The event was launched by the CEO Jonathan Pearce, who spoke of the work of the charity and his gratitude to the Roger Counter Foundation, for funding the awards and for their very generous financial help with the Live your Life project. I wanted to cheer at that point, having gone on a Live your Life day in Manchester. These days are designed to help people with lymphoma cope and get back on their feet once their treatment has finished. They cover topics such as identifying the symptoms of lymphoma recurrence, a healthy diet and exercise, and coping with the psychological aspects of a lymphoma diagnosis.

My very generous Beacon of Hope Award nomination described me as always having a smile on my face, but like many lymphoma patients, I have found getting out the other end of my experience difficult. I’m sure many of us feel the need for a little support along the way to our new reconstructed life. So the Live your Life project and the Roger Counter Foundation’s support of it, our local support groups and the Beacon of Hope Awards event has meant a great deal to me. Compere for the evening, BBC Radio 4 presenter, Susan Rae, spoke of her much-loved colleague, Rory Morrison, who sadly lost his battle with Waldenström’s Macroblobulinemia (WM) in 2013. 

Then came the awards themselves, with citations read out by Susan Rae. The stories behind the awards were moving. A brother had been so grateful when the Lymphoma Action helpline helped his sibling for whom English was a foreign language that he nominated the charity for his year as a mayor in London, and gave his mayor’s expenses to the charity too. A ward clerk was nominated for her unceasing care, remembering each family member’s name as they visited their parent on the ward. A young mother with Hodgkin lymphoma was nominated for her determination in caring for her infant son throughout her treatment. He was there to collect the award with her, and showed remarkable patience with all us adults throughout the evening. Another person affected by Hodgkin lymphoma was nominated for her blogging to help others with lymphoma. Several were nominated for starting or running support groups; one organiser of a support group with more than 200 attendees received nine nominations!

Before Jonathan closed the formal proceedings and we headed out for group photos, more wine and bite-size chocolate brownies, Lord Menzies Campbell of Pittenweem, patron of the charity, generously took time to share some words. What particularly resonated with me was when he spoke of those beacons of light who were not with us that night, but who were nevertheless just as worthy of the award. I came away remembering that I am just one representative of all that quiet heroism and compassion taking place in homes and cancer wards across the UK. Lord Campbell finished by saying that, for him, the new treatments being developed for us all the time were his ultimate beacon of hope.

As we travelled home, I looked back on all that had happened to me since the evening, almost two and a half years ago, when I was told I probably had a condition called “lymphoma”, which I didn’t even understand was a cancer. I thought about all that has gone well, all the freedom to try new things this cancer has given me, and all that hasn’t gone quite so well. In the face of it all, the idea of all those examples of quiet goodness, described at the awards and by Lord Menzies Campbell, was the most comforting for me.