This transcript was extracted from the ‘Living with Lymphoma/CLL‘ video.

Thank you so much to Dr Windrum for that talk. So on your agenda, you will see that the next speaker was supposed to be Kellyanne Gillan. Kellyanne, unfortunately could not be here with us today. So, Jill Surgenor has very bravely stepped into her shoes. So I’d like to welcome Jill.

Hi my name is Jill Surgenor. I’m one of the haematology nurses here in the Northern Trust. Kellyanne was supposed to do this chat today, but she’s not able to make it, so I will do my best to do a good job of her slides. so I’m going to be talking about living well with Lymphoma and CLL.

Next slide. So this is our wee team. there’s six of us all together. Lisa Lyons is our advanced nurse practitioner. She’s on the bottom left there. And then the rest of the teams are CNS’s, Myself, Bronagh, Helen, Kellyanne and Kerrie. And I’m sure you recognize the girls on the screen there. So our role is to provide support, information and education to those who may be affected with lymphoma and CLL, along with their families.

We discuss their treatment options, disease and potential side effects of treatment, and we act as your key worker. we’re a point of contact for you throughout your diagnosis, treatment, and living with your condition. We help with your physical, psychological, emotional, or social problems relating to your illness or treatment side effects. These four elements sort of encompass what we talk about your holistic needs.

So you might hear us talk about holistic needs assessment or inviting you to come for an EHNA. We can do that at certain times throughout your diagnosis and treatment or just if you feel you need a chat. We can do that at any time. We signpost patients and their families to appropriate social or support services, work alongside the consultants and haematology team reviewing patients as well.

So having a diagnosis of lymphoma can have, a big impact on your life. There’s a, along with getting a diagnosis, there’s a lot of feelings of why did this happen to me or why me? Along with, getting to grips with new terminology, medical terms. And it can be a lot of information, along with, going for investigations, scans, biopsies and, regular blood tests.

And that can be about daunting, if you’re not used to that environment. And then as well for talking through treatment or the decision not to treat. If you’re on watch and wait, that can be just as daunting. So there’s lots of feelings and emotions, that comes alongside a new diagnosis. Feeling scared or worried, Sad. Lonely.

Frustrated. Angry. For some, that can bring a sense of relief to know that you’re feeling unwell. And now we know what the issue is, and that can have a lot of side effects in terms of how you’re feeling. But, there is lots of support we can offer. so it’s important to acknowledge your feelings. there’s no correct way you should feel.

You may feel happy and upbeat, but there may be times you’re feeling sad or frustrated. you should be aware of how you’re feeling, how you’re feeling, and how its impacting on you and this may change over time. So it’s a good idea to think about how you prefer to access support. and what you would find useful for them times when you’re not feeling so good.

And this may come informally through your family and friends circle or in a more formal setting through counselling and psychology support.

So we all have families, friends and partners. and having a diagnosis can have an effect on the wider family circle. and can cause a lot of stress, particularly if there was any problems beforehand. It can just heighten everything. you may find that the roles change in your relationships. family and friends are likely to feel helpless to you at times.

I’m sure, and there is a pressure to always be strong and not to worry them. and it can be hard to know how to be normal together. It may feel that your family and friends have become distant from you, but there is lots of amazing services and resources out there that can help support you and your family at this time.

And a lot of them are here today. Charis, are based in Cookstown. They do a lot of holistic therapies aromatherapy, reflexology and also have a, counseling support. Macmillan Cancer Support have, a wide range of support services there. in terms of benefits support, counselling. They offer a buddy service if needed, feel good, look better and other things going on there too.

Cancer focus is great for counselling. volunteer drivers. If you find that you’re struggling to get away to your clinic appointments, we can arrange for voluntary drivers. If you’re within a certain area. move more is also provided by Macmillan, we work with local council areas and get you in touch with the gym classes. Go into the gym, walking different clubs.

This can be good for social support. Rosie’s trust is here today as well. it’s a charity that can help with your pets. get them out for walks whenever you’re not feeling like it. Or if needed, they can provide foster care to your pet. And lymphoma Association is great for information. Action cancer. Macmillan information support who are also here today.

So very important that, you stay connected to other people, whether that be with the charities that some of them I’ve names today, your hospital, your doctors, CNS’s and your GP. But also there is great forums online lymphoma action. is one in particular, and other Facebook groups. Macmillan has one there too, there as a buddy service, through Macmillan and there as well.

We can get you in touch with other patients going through a similar situation and clinical trials as well. If you ever feel that you need a bit of additional support or some signposting to to get you on the right track, please do not be afraid to pick up the phone to the clinical Nurse specialist team. We are here to, to act as your key worker so if you needed anything at all.

We’re here. there’s six of us all together, so you’ll always get somebody, our amazing support worker, Kate Duffy’s here today as well. She would take our calls and triage and let us know if anybody’s been ringing. And we will get back to you as soon as possible.

So, practical things you can do to help live well with lymphoma. Get to know your support team, your doctors, your consultants, the haematology nurses, the staff and Laurel House. Amazing as well. Kate Duffy, I’ve just mentioned our support worker, and, the chemotherapy helpline, as they are 24 hours a day. If you’ve got any questions or queries about not feeling well or symptoms, you can give them a shout.

Other areas of support, your GP in the community, dietitian, OT, physiotherapist, some of whom are here today. district nurses and the phlebotomy services in other sites. So lymphoma every 28 minutes someone in the UK is diagnosed with a Lymphoma or CLL. Lymphoma is currently the fifth most common cancer diagnosed by clinicians in the UK.

Every year in the UK, nearly 2000 people are diagnosed with Hodgkin’s lymphoma and nearly 17,000 people are diagnosed with a non-Hodgkin’s lymphoma. That, and that includes CLL. So knowledge is power. the more you know about your disease and living well with it, the better. And so it’s good to be vigilant of, any side effects that come with treatment and report them as soon as possible through your helpline.

Important to comply with your treatment as prescribed. Some people find it useful to keep a diary of symptoms and how they’re feeling. and you can look back. and also, knowing what support is available is a good idea. So for patients that’s not on treatment, it’s good to be aware of what signs and symptoms you’re looking out for.

Swollen lymph nodes, fatigue without reason. Unexplained weight loss. more normal infections or more infections than the normal, drenching night sweats, itchy, fever, abdominal swelling and chest pain or difficulty swallowing.

Coping with symptoms and side effects. It’s important that, you know, that’s the whole process can be tiring. there will be days where you’re feeling more fatigued than others. So it’s important to pace yourself. we all have a limited energy supply, and some days its better than others. that’s just to have an awareness, you know, if you are feeling more tired to, to listen to your own body, but as also important to day activities like going for walks and meeting friends for coffee and whatnot.

So supportive care… Doctor Windrum I’m sorry, touched on this, with his presentation, but it’s good to keep up your annual vaccinations. You’re flu, COVID, Pneumococcal and non-live shingles. Your GP will be in touch with you about when these are due. Knowing and understanding ‘B’ symptoms. that’s what I’ve just covered there.

That sweats lumps or bumps weight loss and itch. Any problems like that you can, get in touch with the CNS team directly or the help line. cardiovascular. It’s good to take into consideration, balanced diet, exercise. blood pressure, Cholesterol. Generally, the GP can do that, hopefully on an annual basis or there abouts and also just to be aware of, of sun safety and keeping up to date with any screening that’s being offered. And holistic needs assessment. We’ll offer this to you at the point of diagnosis throughout treatment and the end of treatment. But we can do that at any point in time. And other top tips, just we all like to get away in our holiday especially at this time of the year. If you are going away.

Just to bear in mind that travel insurance is really recommended that you disclose your diagnosis and then you’re well covered whenever you’re setting off on your travels. Going to appointments writing down any key questions that you have and you want an answer because you know yourself, you know, we have all these questions in your mind.

But sometimes when you sit down to to ask them, you can’t remember. keeping a diary can also be useful.

Fatigue. So we talk about the three P’s, plan, pace and prioritise. So, if you do have a day where you’ve got lots of things on, just remember to sort of break, break them up, do these small things at a time and prioritize what’s important and what’s not. Your family and friends. If you’re worried or concerned, never be afraid to talk to each other, reach out and ask for help.

And it’s good to talk about your lymphoma. Either with your family or friends. You can reach out to us at any stage to your CNS team. Stay off Google. Kellyanne says, it’s really knowing where to go for the best advice. I think this might be my last slide here. Sleep. So easier said than done getting a good night’s sleep.

It’s particularly if you’ve got fatigue through the day. But there is some wee tips here. it’s good to get out for exercise knowing how to relax. CBT is, can be something that can be accessed but that’s real problem. finding a relaxing place to sleep, maintaining the routine, keeping a healthy diet, avoid alcohol and caffeine. That’s it.

Thank you.

Thank you so much, Jill. I mean, it’s already difficult to stand up here and do a presentation. Never mind landing down on the day. and doing one without sort of expecting to. So thank you so much.