Let's Talk About Brain Tumours
Join us as we talk to about all things brain tumours with those who have been diagnosed, their friends, parents, partners and children as well as with researchers, fundraisers and advocates. Find out how The Brain Tumour Charity is working to improve outcomes for those who are diagnosed with this unforgiving disease.
Please Note: We recognise that everyone's experience's are unique. Our guests are sharing their own personal experiences of diagnosis, treatment and care. These may differ from yours or those of your loved one.
Let's Talk About Brain Tumours
Episode 14 - Spotlight on Coping At Christmas
We know that whilst Christmas can and often is a great time of year, it can also bring with it some challenges if you are living with a brain tumour or caring for someone who has a tumour. In this episode, Cam, Chandos and Sara share some of the things they have found have helped them cope during the Christmas break. Kate Skinner our Support and Information manager also shares some information about the support available during the holiday break.
If you need support over Christmas you can contact our support team by emailing support@thebraintumourcharity.org or calling 0808 800 0004. You can also find information on our website https://www.thebraintumourcharity.org/living-with-a-brain-tumour/get-support/
You can also call the Samaritains on 116 123, they are available 24 hours a day 7 days a week
If you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org
Welcome to Let's Talk about brain tumours the podcast where we'll be talking to people who have been affected by brain tumour diagnosis, either their own diagnosis or the diagnosis of a loved one. We'll also be sharing news and updates and brain tumour charity about what we're doing to have the harm and double survival
Chandos:Welcome back to the brain tumour charity podcast in this spotlight episode, myself, Cam and Sarah talk about our coping strategies over the festive period. And what about for you can was Christmas and the festive period like for you and your household?
Cameron:To be honest, it's it's quite math families are quite family oriented is when I was younger was always run bananas, we'd always open the presents on a morning. So predominantly, my mom said the family would see Miami's my was my cousins. And we'd all sit down have Christmas dinner on there. But as we got older, and suddenly, after my Nana passed away, we all kind of stopped that tradition. We have Christmas dinner around our own house. Or occasionally we might get together and go to a restaurant for it. But yeah, it's still a family made of we'll all gather around one of the houses. Just have fun, really. And this year, we've got we've got a few additions to the family. I've got nieces and nephews this year. It's going to be exciting this year, get to see the little ones enjoy themselves. So yeah, it's quite, usually quite a busy day. And then we finish off just to relax the evening, really? And
Chandos:how do you cope with the stress and stuff? I know, you were diagnosed, kind of when you end your teenage years. So do you think that had an impact on Christmas and how you dealt with it?
Cameron:The biggest thing that affects me, especially over Christmas, is the build up to well, not necessarily on Christmas day itself. Because I have found since I've been ill and been through treatment, I cannot cope with stress very well. I go from nought to infinity in matter of seconds of the most basic of things. And then also stress levels don't help with my memory. My memory is not that good. Again, due to my brain tumour, it's more the build up than every than anything. Everyone's a bit stressed on the deck because everyone wants everything to be perfect. And it's not necessarily the opening and a presence. It's when Christmas dinner has been made and things are a little bit heated at times. You don't know whether it helps or whether whether you get in too much way. I think once the Christmas meal is over, that's when you kind of enjoy yourself. Really, the only thing I've suffered with really is fatigue. It's a busy fall on there with a lot of things going on. Which sometimes I struggle with, when there's a lot on a lot to think about a lot of things to do. Is that fear of missing out almost like you want to be part of everything but you also want to go and have a nap that's I find. Yeah, yeah, I find that I'm still mentally a little kid. Like I love Christmas. And you want to do anything and everything you can sort it was Christmas ties you out, especially when you're fatigued quite easily. Sometimes you need to think yourself now either have 10 minutes to yourself or whether it's enough whether it's just to chill out. It's try not to burn yourself out too early, because it's a really long day. You tend to get up early, you know there's a lot on through the day, and then it's usually a late night as well. So it's looking after number one. So it's looking after yourself. Making sure that when you need to have a break, have a break, you need to take a breather, and just let everyone know I'm struggling a bit. I'm having a bit of fatigue. I just need five minutes. You know just taking it easy really and just enjoying the day for what it is not burn yourself out. And do you
Chandos:have any other things you do to the kind of top tips that you would suggest other people try out?
Cameron:One thing that I have found out probably more this year than more even though I have used it before Oh, if you're getting a bit overwhelmed or a little bit stressed, try meditation. There's a lot of free meditation out there as well. There is one to pay for, but you don't have to look that far. You can Google it. There's a lot of streaming link. Even on YouTube, you can search. There's a lot of different types of meditation. The ones I find helpful, where the focus just on your breathing, being a bit mindful. Also, I find giving yourself a compliment every now and again. Even though it's hard to do with times because you you don't feel the greatest. I think that will help you out.
Chandos:Sarah is meditation something that you find helpful?
Sara:I love meditation Chandy and I know not every it's not easy for everybody. So guided meditations are great. I listened to Dr. Joe Dispenza. Every morning blessing of the energy centres, it empowers your body it puts more energy into your body realigns your your energy centres and your magnetic field, it strengthens you. And it helps to heal the body as well as relaxing you so if you can, and sometimes it's just a five or 10 minute meditation, there's loads that are free on YouTube. Actually, I don't know about you Chandy. Do you do meditations?
Chandos:I try to haven't really done it in the last couple of months, probably should pick up again, because it's something I find really helpful all the time.
Sara:Yeah. And you know, another great way to relieve stress and what's going on, because there's a lot when you know, dealing with a loved one who's got a brain tumour if you've got a brain tumour is to journal. And it's a great way. And it seems quite simple, but a pen and notepad and just start to write down, say for itself. I almost see it as a mini coaching session, and I share this with other carriers will my talk. So write down? What are the issues? What's causing you grief at the moment, I then say to myself, well, what can I control? Because you can't control everything, of course. And then I then start to write down what they can control and what and what was your best friend? What would they or you know, or close confidant say to you. And I start to write that down as my best friend. And then I start to underline the positive messages of what I need to do. And it kind of empowers me, also gets it out of my head and onto paper as well, which is really useful.
Chandos:And is that something that you do all year round?
Sara:I do all year. Yeah, I do. I don't write in it every night, I kind of writing it as and when interesting things come up. So it's not just about all the grief and stress that we ensure. But I also some immediate mazing things, magical things. And sometimes I you know, I'll sit and reflect and when I get into bed, I reflect on the day of what's happened. I know we have this whole attitude of gratitude and think, really, you know, if you're looking after a loved one who's who's very poorly, but actually I surveyed the day and I do it with net when Neil's here as well. And I would survive the day and look at what did go well and what I was thankful for. So thinking about all the great things that are still in our lives, you know, really important to have thanks for that. And it puts you in a good mood just before you go to sleep. So I do that as well.
Chandos:Cam Do you have any final top tips or things that you do that are helpful over the festive period.
Cameron:So I'm still off social media, I think that can be a negative at times because it is was find a lot of social media is you're comparing yourself to everyone else. And if someone's bragging about something that maybe you would have liked or were at that moment in time, you feel like they're having a better time than you. It's not good for you, your mental health. I think if you time focus on yourself, to spend a bit of time having a bit of yield time, you know, Christmas is a day off, everyone gets Christmas off, whether you want to go out friends and family and be busy all day or whether you just want to chill out and enjoy yourself relax. It's about you know, people say it's about giving what you know, you don't have to have presents to receive a gift. You know, you've got it all. Give yourself some time to relax and the mindfulness thing about yourself.
Chandos:I think a point that you raised like,friends, they're like, it can be higher as well. Like if you're alone, if you haven't got those people to call upon say, if you are just reach out to a friend, you might be thinking I'm struggling as well. Like not just those who are affected by brain tumours because I know we've talked about anxiety and the stress of the festive period and wanting to be part of everything but also being really tired all the time. Yeah. I think like just reaching out to me and saying like you Okay, and just things like that. Or having someone reach out to you it can be really helpful. So don't be afraid to like send a text message or even try and find one. Because the first period, I think, especially over COVID, is definitely increase anxiety for everyone. So,
Cameron:that's it, I think the biggest thing I've learned is, how powerful is a message or a phone call or something for some months there, you know, a walk here, obviously, there, you know, it doesn't have to be a walk here as if like, something's wrong. As a you can message someone else and say, you know, obviously they or something, because it opens it off for someone to go, actually die, I'm having a bit of a bad day or, you know what I'm, I'm not feeling okay. It gives them the excuse to open up then and let it off the chest. Because, as I've said, in, in the podcast, about a time set as much of the candidate about talking to people vent net, getting it off your chest, because a lot of things, whether you write it down or you I find, personally I find it better talking to someone to get it off your chest, you know, if there is something wrong, you know, if someone doesn't have that place to go on Christmas, all people see a new got friends or whoever, you know, if you drop them a text that might make the day just think, Oh, someone thinks about me, you know, Merry Christmas, oh, you're doing even if you have like a five minute chat with them, maybe lifting, lifting to do
Chandos:think that's a really powerful note to end on. Thanks, Kevin, and Sarah, for joining me today, to ensure that you have the right support and care that you need over the Christmas period, I sit down with Kate Skinner, the adult service manager for the brain tumour charity. So Kate, you want to tell us a bit about you and what your role is.
Kate Skinner:So I managed a support line services, the incoming services that we have that we use to support the wonderful community, we've got a wonderful team. So yeah, it's a pleasure to be manager of the team.
Chandos:So if someone is looking for support over the festive period was available.
Kate Skinner:So we like to said We recognise that there's people are going to need that additional support, we know that Christmas can be a little bit of a tricky time for lots of people. So we have our support line is still kind of open in the run up to Christmas. So it's open all the week before Christmas up to Friday, the 24th of December. So on that Friday, which is Christmas Eve will be open until nine till 3pm On that day, so we're closing a little bit early, then we are closed over the kind of Christmas weekend. So from Saturday the 25th. till Tuesday, the 28th of December, we will be closed. But we reopened again on Wednesday, the 28th of December between 10 and two. So we're also open. Firstly, the 30th of December and Friday the 31st of December, and those three days will be open 10 till two. So people can Yeah, we really encourage people to get in touch with us call us reach out if you've had a bit of a difficult time, we'll then be closed over the weekend again. So Saturday to the first of January to Monday, the third of January will be closed, but we'll be back open again. And then business as usual, from Tuesday, the fourth of January, so nine to five, Monday to Friday from Tuesday, the fourth of January. So yeah, we encourage people to give us a call between that space of Christmas and New Year. But there's also be Facebook support groups that we run. So they'll obviously be operating. As usual, we'll make sure we've got a bit of a plan in place to try to make sure that we add as many people to those as possible before they're before the Christmas break. But they're such wonderful groups, it's likely that you're going to meet someone on there at three o'clock in the morning, if you ever need a bit of additional help there. So we'll be monitoring those on those three days as well. So Wednesday to Friday, we'll be monitoring those making sure everything's alright. That they are available all throughout.
Chandos:And is there any other additional support might be available to someone who need someone to talk to you needs to access support urgently over the festive period.
Kate Skinner:So absolutely, there are some other support lines that we're aware of. So in particular, the Samaritan support line is available 365 days a year, 24 hours a day. So we'd really encourage people if they're feeling a bit low, reach out speak to them. They're a wonderful service and they're there throughout the year. Of course if you have any kind of medical concerns, there's always NHS 111 reaching out to your GP your GP out of hours service and of course in emergency dial 999 or visit a&e We'd really encourage people to have a chat really open chat with their medical team before before Christmas and just understand who they can contact and when what the numbers are. Don't be afraid to ask but it's always good to know exactly who can come tact when they'll be available. You should contact if there's no middle of the night and you're a bit worried who you need to be reaching out to. So yeah, have those conversations, make sure you know who to contact. Thanks again
Chandos:to Cam Sarah and Kate, for helping with this episode of the podcast. I hope you've enjoyed it and found it useful to give the gift of time this Christmas as a part of the brain tumour charities fundraising efforts. Head over to the brain tumour charity.org For more information, whether you've been diagnosed with a brain tumour or a family member or friend has, they're always here to help access the support line call. Oh, 808 800 Triple 04 That's Oh 808 800 Triple 04 Thanks again for listening.
Sarah:We hope you enjoyed today's episode. Don't forget to subscribe to the podcast so you'll never miss an episode. If you'd like more information, you can visit our website at brain tumour charity.org or email our support team at support at the brain tumour charity.org And finally, before you go, if you enjoyed this podcast, please can you leave us a review on iTunes wherever you get your podcasts so we can reach more people and raise more awareness