This transcript was extracted from the ‘Living with Myeloma‘ video.

I’m just going to cover a few quick slides for you all just about living well with your condition. this is our clinical nurse specialist team, so I hope you have met at least one of us along the way. I’m Kerrie and behind me we have Kelly-Ann. Helen, Bronagh, Jill and Lisa, our Advanced Nurse Practitioner. So we’re really here as your key?

Well, I call it key worker, but your key point of contact. So if there’s anything we can do, whether that be discuss your diagnosis, treatment options. any questions, queries, please get in touch. You should all have our contact number. If you don’t, you can contact us via Kate our support worker. but I’m sure by now you are all used to phoning in.

Why are we here? So, as Dr Niblock has said, we know that myeloma impacts your whole life. It’s not just the physical. So we’re here really for your holistic care. So this little diagram I suppose, just shows the different areas of your life, which you all know, yourselves that myeloma can impact.

So whether that be financial or practical concerns or maybe worried about loved ones or children. We’re here just to really direct you to the right resources, the right support and answer some of your questions. So how else can you get support? So just we’re a big team looking after you. So don’t be afraid to ask any of us.

No question is a silly question. And if I don’t know the answer. I’ll go and find somebody who does. Hopefully. the Laurel house staff as well are there to support you. We have our nurses, our care Assistants, even our admin staff are all very friendly Bunch. So Myeloma UK, I think Reece is at the back from Myeloma UK.

So, again, a great resource. It’s the leading UK charity for myeloma and they have a brilliant website, a lot of information online about your disease or treatments, but also practical things. They have their own helpline that you can call. So for example, sometimes we would direct people if they had a query about travel insurance or something like that.

And you guys are very good at sending out information. they also have a patient information stand in the waiting area that you can just lift booklets. We also have Amy who you’ll meet later on. She’s our Macmillan information support within the Northern Trust. And she’s fab. She just knows no matter where you live in the trust she knows exactly what services are available.

So we use her, you can phone her directly, she as I say, she just knows everything about this landscape. So, we’re here to do it. We can do a holistic assessment of your needs and just direct you in the right way. so I would say, you know, we have this big team looking after you, and yous are going to hear from some of these guys later on so I’ll not go into too much about their role, but there’s other people that we can refer you on to.

So we have our Macmillan Benefits Advisor service. Denise is out and she’ll be right there at Breaktime today. Any of you are welcome to get a call with one of the advisors and they could do a quick benefits and grants assessment just to make sure that you are getting everything that you need.

Because we know even, you know, you think you’re kind of comfortable, there is a obviously a cost to cancer. You’ve got your travel, you’ve got weekly, sometimes twice weekly appointments to drive to maybe extra heating in the winter months and things like that. We have our counselling services and Valerie is going to talk all about emotional well-being later on.

But and we have cancer focus and we also have Charis out in Cookstown and Action Cancer they do complementary therapies up in Coleraine, Exercise coordinator who you’re going to hear from voluntary drivers for anybody who’s struggling with lifts, there’s many many more, even Rosies Trust who look after your pets if you’re in hospital.

So you know, if you are struggling with something, the key is just to ask Aaron has touched on some of this as well. But just there’s a lot that you can do as individuals to look after your own health and live well with your condition. We hope that you’ll be living many, many, many years with myeloma. However, it is a chronic condition and we’re giving you a lot of treatments, and the disease itself has a lot of impact on your life.

And we’re very aware of that. Valerie will talk about your emotional wellbeing, but things you can do is find your, own supports those people who are there to lift your mood when you’re having a bad day or if you’re absolutely exhausted, if somebody offers to help with some, day to day stuff. Please identify those people. Our support group, which you are all going to sign up to, infections, as Aaron has said, we encourage you to keep up to date with vaccinations.

So that would be things like annual flu vaccines, Covid, of which you probably have multiple, as we have, as well. pneumococcal. And then there’s also the non live shingles vaccine which your eligible if you’re over 50 and bone health as you said you’ll be on your monthly. The Zometa doesn’t generally have many side effects. But one thing we do ask you to do is keep an eye on your teeth.

And the reason for that is just if you did have to have a tooth extracted, sometimes you can have difficulty with the jaw and stuff for healing. So keep a wee regular annual check of the dentist. And if you need any teeth out let us know, we’re always hearing about cardiovascular health. But, you know, things like diet, weight, exercise and exercise can be anything from a you know, a gentle walk.

If you do have myeloma and you want to and you’re having problems with the bone supporting, you speak to us first. Obviously if you’re going to take anything, weird and wonderful up, a yearly check in with the GP just to keep an eye., Blood pressure, cholesterol, diabetes, and then obviously just keep an, you know, you’ve got one cancer.

We don’t want you to get another one. Or if you do get another one, we want to catch it all really quickly. So just keep up to date with any general health screening that you’re offered, making sure yous all cover up in the very little sun that we get, checking out new moles, any new signs, symptoms, anything.

Just don’t be sitting at home. Just get them checked out. and of course, then we all know that the treatments cause side effects. So the big one that you tell us about is a peripheral neuropathy, pins and needles and hands and feet. and there’s lots of other side effects. Don’t be sitting struggling. If something’s impacting your quality of life, there’s things that usually we can do to help.

So please get in touch with us. drinking plenty of fluids and things. It’s good for the kidneys. We do advise avoiding drugs that are hard on the kidney. So the likes of your Ibuprofen and other non-steroidals and things as well. I’m sure you are all aware of this. This is a really important number, it is our 24 hour Helpline it is there if you’re unwell.

So it’s really important if you’re especially if you’re on treatment, if you have any infections or if you’re unwell anywhere , in anyway, please give us a phone. it’s 24 hours a day and the nurses are trained just to then do a wee assessment and give you the advice. So, sometimes we’ll say go to the GP, but generally just come to the helpline first and they can do that assessment.

So yes, another wee flier here for the support group. please do come along. The next one as I said is the 23rd of July. It’s it’s a mix of trying to get to know other people going through something similar. But we have as Aaron said, we do a lot of different talks on what you want to know about.

So we’ve had pharmacists come along. We’ve had consultants. who else have we had? benefits advisor. We’ll have a few more planned for them. The physios coming to the next one so we’ll get you all up and walking maybe if the weather is good so so thank you. That’s all I have to say.