Our National Conference is a chance for people to come together and share questions, concerns and stories about living with and beyond the condition. This year - on Saturday 11 May in London - there's also a focus on family members; exploring how a diagnosis can affect loved ones too. Our panel of expert speakers give inspiring, uplifting and often interactive presentations about the topics that we know matter to you.
But don't take our word for it! We spoke to previous attendees, each of whom is at a different stage in their lymphoma journey, but all of whom are returning to our National Conference again this year. They explain in their own words why they keep coming back..
'Mark will be attending his ninth consecutive conference with us this year!
'Lymphoma can be a very lonely disease. It’s not well-known amongst the general population and it’s a complex condition with over 60 subtypes. I have follicular lymphoma, the most common type of low-grade or slow-growing non-Hodgkin lymphoma, which affects my white blood cells.
'In the nine years since I was diagnosed, I’ve never needed any treatment. It’s had no perceivable effect on me physically – but mentally it’s a very different battle. It’s never far from my thoughts, but because I’ve been fortunate never to be really ‘ill’ with it, I don’t look ill and I just carry on as normal – it’s no longer a topic of conversation with friends and family.
'But follicular lymphoma is a chronic condition. I’ve had it for the best part of a decade and I’m always going to have it…so I feel I still I need to talk about it!'
For Mark, that’s where our National Conference comes in.
'I can walk into a room where literally hundreds of people know exactly what I mean. It’s uplifting, inspiring – and there’s a real sense of camaraderie, because although attendees might have different types of lymphoma, they can all understand the challenges that certain aspects of the condition bring.'
Clare, who was diagnosed with the same low-grade lymphoma as Mark nine years ago, agrees. As a member of our Manchester Support Group, she believes it’s important for people affected by lymphoma to have the chance to talk and listen to other people in a similar position.
'The speakers at Lymphoma Action’s National Conference are always fascinating – and it’s such a lovely feeling to walk into a room where hundreds of people just ‘get it’. They understand the very specific challenges that come with a lymphoma diagnosis.
''It’s a unique condition with its own very specific challenges. You never get the ‘all clear’ with non-Hodgkin lymphoma. You might feel very well and immensely reassured that people can live for thirty or forty years without ever needing treatment, but in your head it makes a difference. That’s why events like this National Conference are so important. You not only get to hear about advances in treatment, but you also get to talk to people who truly understand how you feel.'
Support with psychological challenges
Some people can be diagnosed with lymphoma and never need treatment. Sue, who volunteers as a support group co-ordinator for Lymphoma Action, echoes Mark’s sentiments about the psychological challenges this presents.
'It’s a huge body blow to be diagnosed with any type of cancer. But I think one of the difficult things about lymphoma is that it’s not widely known about. It’s actually the fifth most common cancer in the UK, but if you’re told you have it, the chances are you won’t know anyone else who has had the same diagnosis. Even GPs may only see one or two cases in their working lives.
Nearly nine years ago Sue was diagnosed with diffuse large B-cell lymphoma, a high-grade or fast-growing form of the condition. Six successful cycles of treatment in 2010-11 means she is in remission.
'In hindsight I’ve realised just how hard it can be for people diagnosed with a slow-growing or low-grade form that doesn’t require immediate treatment. I think the concept of having cancer without it being treated is a huge psychological challenge. People may seem to carry on as normal, and because they’re not having treatment, family and friends think all is well, but it’s likely they’ll be anxiously waiting for signs that the condition is getting worse.'
This treatment regime, known as active monitoring or ‘watch and wait’. People diagnosed with a low-grade form of the condition have regular check-ups to monitor their health and are advised to contact their medical team if they notice any symptoms, such as weight loss, night sweats, fevers, fatigue and lumps in the neck, armpit or groin.
Mark has been on this treatment regime ever since he was diagnosed.
'I’m constantly on the lookout for any of the typical symptoms associated with lymphoma and alongside this I see my consultant every six months for a blood test and brief check-up. Trials show that there’s no benefit to starting treatment while you’re feeling well. With the type of slow-growing lymphoma that I have, research suggests it’s better to wait until you really need it. It’s no less effective in the long-term, and it also means you don’t have to deal with the physical side effects associated with treatment until the point where your symptoms are having a detrimental effect on your quality of life.'
We know from calls to our confidential helpline that there is a real need for psychological and emotional support for patients on active monitoring. It’s also been flagged up in the new NHS long-term plan. In response, we’ve asked highly experienced clinical nurse specialist (CNS) Barbara Von Barsewisch to host a session about this very subject at this year’s National Conference. She’ll also be co-hosting a session about emotional wellbeing for family members, friends and carers affected by a lymphoma diagnosis. View the full programme for the 2019 conference.
Advances in diagnosis and treatment
Mark lives his life to the full whilst he is on active monitoring. He completely trusts the team at his hospital and is very aware himself of any potential symptoms. But as well as meeting others with lymphoma at the conference, he also enjoys hearing about the latest research and developments into the disease because it helps him feel more in control.
'There’s always something new to learn and I really like to hear different medics’ perspectives on the condition. It’s reassuring to hear about progress and for me – being armed with information makes it easier to live with the cancer.'
Sue relishes the sessions on medical advances too. She is particularly looking forward to honorary consultant haematologist Dr Claire Roddie’s session on ‘new and future treatments’ – which will include a section on the long-awaited CAR T-cell therapies.
'I’m always really excited to hear about the advances in treatment and diagnosis that scientists are making in collaboration with medics. One of the challenges posed by lymphoma is that early symptoms can be vague and easily confused with other conditions. I know people who have been referred to neurology, cardiology, gastroenterology and dermatology departments whilst their condition worsens. Attending the Lymphoma Action conference and hearing about advances gives you hope for the future; that outcomes will improve for people living with lymphoma.'
Book your place now or call or email us today. Alternatively, speak to Sophie on 01296 619412 to secure your spot at the UK’s leading event for people affected by lymphoma.