Sound Waves

The Luke Gilbert Volunteer of the Year award was created to recognise when someone goes above and beyond to ensure young people in recovery from cancer have the support they need.

The award was named for Luke Gilbert, a young man who sailed with the Trust while in recovery and who went on to become the kind of volunteer everyone loved and looked up to. It was set up in his name to remember him and his contributions, which will forever play a part in shaping the Trust as we continue to look to his example, embodying what it means to be an irreplaceable part of the Trust family.

Joining host Scott this week are three of the four previous recipients of the Luke Gilbert Volunteer of the Year award, Paul, Rosa, and Alex. From the Trust team, Lorna joins them to give an overview of what volunteering has been like in 2020, and how things are shaping up for 2021. Rosie, who received the award for 2017, was unable to join the gang on this occasion, but we send out our love and look forward to her joining Sound Waves again in the future.

While listening to their conversation, if you joined the Trust for any events this year or have listened to previous podcasts, keep in mind the volunteers you've come across in 2020. It would mean a lot to them if you put them forward for Volunteer of the Year, which you can do on the Trust's website here: https://www.ellenmacarthurcancertrust.org/volunteer-with-us/ 

Thank you. For making sure we were there to support young people throughout 2020. For ensuring we'll be there for them in 2021. For being there with us through the most difficult year the Trust has faced. 

Thank you.

Host Scott is joined by Trust CEO Frank Fletcher, as well as Leanna, Morven, John, and Ed, who all planned to join us on trips this year. Instead, they were at the heart of the Trust's Virtual Summer, getting involved in all sorts of activities together while we were apart.

It's down to your support that young people were still able to access the support they wanted this year. If you can pick up a Christmas gift from our online shop or take part in some festive fundraising, that will continue to make a massive difference. But things aren't easy at the moment, and we understand completely if you can't. What matters this Christmas is that we know you're with us. 

Following her treatment for alveolar rhabdomyosarcoma, Ellie became infertile and started living with the menopause. 

She tells Sound Waves how her friends were talking about boyfriends and periods while she felt 18 going on 80. Her experience had impacted her plans for a family and she was constantly exhausted.

But she adapted. Ellie has since found all the right support and is in control of the track her life is on. 

From coming to terms with her infertility, to seeking out specialist knowledge of menopause symptoms - all the while reminding young people that romantic partners will love them and think they're amazing regardless of how their body functions - Ellie will keep on talking so others know they're not alone. 

Content warning: This episode contains references to hair loss, amputation, and weight fluctuations.

This week, we're talking to Sarah. She was supported by the Trust while in recovery from osteosarcoma, a diagnosis which led to her leg being amputated when she was 16, along with other changes to her body. Now in her mid-20s, Sarah shares her story by giving talks to school pupils and other young people. 

Talking to Sound Waves, she tells of being a teenager who found these physical changes tough, to becoming someone with ownership over her relationship with her body. Along the way, she's taken part in lots of exciting opportunities, such as modelling for a high street clothing brand. We're grateful she shared her story with us here.

This past weekend saw World Mental Health Day. The day itself will mean lots of different things to different people, but what we’ve chosen to do is have a chat about what 2020 has been like, with a positive twist.

Wen is a volunteer and was supported by the Trust when she was younger, and joined us on the first episode of Sound Waves earlier in the year. Jack has been supported by the Trust on a number of trips and was due to sit his volunteer training this year. Chatting with Wen and Jack, even though we wish for things to have been different, it felt good to take stock and be thankful. 

This conversation is us sitting down and noticing the ways in which we have looked after ourselves and each other, and will continue to do so. 

For a lot of people, their time with the Trust isn't a one-and-done. They return for more trips, then maybe they go on to become volunteers, constantly taking ownership of each new experience.

They're able to take their relationship with the Trust into the future with them, as their lives change from one thing to another.

This week we're joined by Charlotte and Alex, two young people who've gone on to become volunteers, and are at the beginning of careers in the medical sector. They tell us about that journey from being supported themselves to being the ones giving out that support, and how the professional and the personal come together. 

September is Blood Cancer Awareness Month.

What these awareness days, weeks, and months do is put into focus the specificities of lived experienced. We talked about sarcoma awareness back in season 2, and hearing George, Chloe, and Lewis talk about what that diagnosis had been like for them was illuminating.

This week, we're talking to Holly and Thomas. Holly's been involved with the Trust since 2014 and became a volunteer last year, and Thomas came on his first trip last year. They talk about it where it all began for them, and where it's taken them since. No two experiences are alike, and this is a conversation with different discoveries and different kinds of personal support when dealing with blood cancer.

As mentioned in the episode, here are some peer-reviewed scientific readings on:

Sugar and cancer

Cannabis, cannabis oils, and cancer

We know recovery doesn't end when treatment does. Survivor's guilt can hang over a young person as they move forward with their lives, remembering their peers who passed away. And despite being a difficult and conflicting feeling, often it goes unshared and unsupported. 

Teenage Cancer Trust Nurse Consultant Sue Morgan MBE & Annie, who has sailed with the Trust, have given talks on survivor's guilt. They share with Sound Waves why it's important we all acknowledge it - young people and practitioners alike - to make sure no one is made to cope all on their own.  

With one of the strangest and toughest years on memory winding down, it is time to look to the future.

2021.

What might next year's season look like? How can we run activities while keeping them COVID secure? How can you keep up to date with all that's happening?

Join Trust CEO Frank along with James and Laura, the Trust's operations managers for the north and the south, as they discuss the lay of the land. 

It's an exciting time, with so much potential. We're glad to have you aboard! 

The UK was in full lockdown the last time we talked about how people still can give their support to changing young lives. Now, we're starting to see some normality return. What was happening two months ago is no longer applicable, but all the same, who knows where we will be in two months' time?

We’ve said it before and we'll keep saying it – once all of this is over, young people are going to need the Trust more than ever. We have to be here in 2021 and beyond to make sure those young people have access to what they need during their recovery.  

There’s no one way of giving those young people your backing. Simon tells us about fundraising from home. Tim, a rotarian, tells us about how he and his district will support the Trust after choosing us as one of their charities of the year. We hear about how spreading the word, directing people to our website, sharing our posts on social media – every little helps.

So join us for the season two finale of Sound Waves as we pin down exactly what kind of support is possible right now while staying COVID safe. Let's get back out there!