Summer Update: What’s Next for Breathe Strong

Hello, it's Rachel here from the host from Breathe Strong podcast. I just wanted to come on today to give you an update. So I'm here today with David from Orion Studios who produce Breathe Strong. Hi, David.

Hello. Hello. How are you?

I'm all right, thank you. How are you?

Yeah, good. Enjoying the warm weather.

Well, I'm glad you are. Our patients are most certainly not.

I know it's been quite a while now since the first season of Breathe Strong completed and it seemed to be extremely well received by our people living with lung cancer and mesothelioma and also by their family members. I've had lots of positive feedback.

Patients saying that they feel they've been given a voice for the first time and family members saying that, you know, they have found that the podcast makes them not feel so isolated and alone. So we've had some really good feedback. But like anything, we, you know, we can't keep going without funding.

And so season two, the reason it's gone a bit quiet is because we are now trying to desperately get some funding for season two and also we've, it's just given us time to sit and reflect about what worked well, what things perhaps needed improving.

And it was found in our, when we were putting together a report about Breathe Strong that many people found the expert session with Professor Sanjay Popat perhaps the most informative and helpful. It was certainly the most downloaded podcast that we had in season one.

So I've been thinking about that, but still wanted to keep the patient front and centre of Breathe Strong.

So what I've come up with, and the proposal is to do a prehabilitation rehabilitation plan aimed at patients with advanced lung cancer and mesothelioma who may be about to start systemic treatment. That's treatment through the vein, that might be also oral treatments for lung cancer and mesothelioma.

Now, we know that a lot of patients when they're first diagnosed, particularly with advanced lung cancer, can be quite frail or they have high symptoms. And so the purpose of this plan is to help prepare you for treatment and then keep you living well whilst on treatment.

Season two will be different in the fact that we will have more experts with us because we're looking to have an evidence based and sound program for you to download no matter where you are in the country, so that you have access to this plan. The plan will comprise of dietary and nutritional advice.

We'll look at when you're on treatment, you have taste changes, what you can do to help with that. We'll look at oral thrush, because that's one of the most underdiagnosed things, things in advanced cancer. But we'll also look at exercise.

How do we improve our exercise? How do we improve our muscle strength? How do we improve this term called performance status?

And I will go into what that is in more detail because basically performance status is what the doctor has used, your oncology team will use to assess whether you're actually fit to have treatment or not. So it's very important.

So we're going to look at that as a beginning and then we're going to build up from that this program of diet, exercise, nutrition and also psychological well being, because that plays a hugely important role in living well whilst on treatment.

So we will still invite our patients and people living with lung and mesothelioma into the studio so that they can be with the experts and share their own personal experiences as well as you get the expert advice you need.

And we're also going to try and put together some fact sheets that you can then download and you can use those particularly for the exercises in the comfort of your own home. Or when we do the exercise video, you can follow us on YouTube because we will be doing the exercises in the studio with our physiotherapist.

We hope that we will have fun, but that this program will be really informative and will be really useful.

So we at the moment have taken this program to several of the leading pharmaceutical companies in lung cancer and mesothelioma, and we're now just waiting to see whether they will be kind enough to give us a grant to fund our season two podcast. So we may be quiet for a while, but please be assured we're not going anywhere.

We will be back, but we just need to get this funding from these drug companies.

And what I would say that is that if you have any suggestions of how we can obtain funding from other parties, if you have suggestions about things that we should focus on, please do send me an email to rachel. Dotco.uk as send me an email at rachelassag.co.uk and I will read the emails and take note of any comments or suggestions.

So I think that's it really from me. David, I don't know if you've got any thoughts that you want to share about your highlights of season one.

No, I thought the show was amazing, actually. I mean, obviously we were there and watching, you know, all of it and, and doing the editing.

And I really liked in season one, the aspect where it was very much focused on the Patient, lived experience. And I do understand why. I think now, season two, moving into some more, you know, expert led kind of information coming in about.

We've, we've talked about some of the lived experience and what to expect when that first happens and how you deal with that and the things that, you know, that you may expect. But now it's, how do you now take some action and do those things while still checking in with the people at the same time?

So I think that's going to be a good focus for season two.

The other thing that's going to be really good about that down the line is that because we're going to have experts talking about particular topics, we can always go back and update those if we need to, if anything changes.

So if there's any new advice or there's any new treatments or there's any new, anything that comes in, we can always go back and update those episodes as well. So we can talk about what's new and that sort of thing. So I think that's going to be great for patients moving forward.

And I know you and I have worked on, you know, we've worked on the grant applications and all this stuff together.

I guess my comment would be, is most likely, I think it feels like we probably won't have any new episodes until after the summer school break in the uk, which will, which is pretty much from now through the end of August, but we'll probably have some episodes in September. I mean, personally, I would say come hell or high water, we'll have some episodes in September regardless.

But hopefully, you know, we will be able to fully, you know, plan and get into season two by then.

Yeah, that's my hope too, David. Yeah. And yeah, we'll keep trying.

I've got another couple of people to talk to, but yeah, my focus is very much on having a practical program that people can use in their own homes. Often the NHS really focuses on prehab and rehab for patients that have had surgery.

So that's great for the 33% of early diagnosed lung cancer patients, but that does not take into account 70% of lung cancer and mesothelioma patients who are diagnosed with stage three and four cancer.

Okay, yeah, no, that's great. I had a question and I lost it. Oh, I know what I was going to ask between now and then.

Is there are, is there anything that's happening that anybody needs to know about? Are there any, like, events or is there anything coming up or does it pretty much get quiet over the summer as well?

Well, in Regards to mesothelioma, we're very much not quiet because we have action Mesothelioma day this year. It's the third of.

So there are loads and loads of events going on all over the country by many different asbestos groups who are raising awareness of the continued danger of asbestos in the uk, mainly highlighting problems such as cosmetic products still continue to pose a problem with having talc in the powder products. Also hobbycraft were recently withdrew the children's playing sound because they had found that there was asbestos in the children's sand.

And then even just this week it came out that all these wind turbines that are being made in China and brought into the UK have asbestos in them. And I'm not sure how much of that asbestos is removed. They're saying that it is being removed but once it reaches the uk.

So I'm bit concerned about that because you know, with the gen general consensus being forcing net zero on the country and with wind farms being built all over, I mean, you know, I went to, I think it was Whitstable the other day and there were just tons of wind farms out on the horizon. So you know, you think well what's going on there? And I'm not very happy about the asbestos being there. So I mean that's breaking news.

So watch that, watch this space. But yeah, so we continue to raise awareness of mesothelioma and the devastation it brings into patients lives.

And so July we focus on that in the world of lung cancer. We've had some big conferences but most of the sort of lung cancer world lung is happening in September in Korea this year.

So we will be watching what goes on there because usually we have breaking news on new treatments, on research that's coming about. So you know, there may be some highlights that we can bring from World Lungs to the podcast later on this year.

Brilliant. And that's crazy. I mean the.

I think there's a whole other discussion to have about the fact that they're still using asbestos in loads of different places and, and loads of different things. Kids sand. Really?

Yeah. Yeah.

Well, China still uses asbestos, we know they still use asbestos in China and loads and loads of things that are made in China come across to the UK now they have very strict guidelines to follow for quality for Chinese products coming in to the uk.

But you know that that was under the radar about the wind turbines and I only found out about that by a certain presenter who's very vocal on Facebook and I thought, really? And thought is she telling the truth? And Went to look it up and yeah, she was nuts.

That's crazy. Well, we will keep an eye on everything. So where can people go to get more information?

I mean, I didn't realize there was something in a couple of days. So this is very timely, actually. I assume to go to the hashtag website. Do you have something going on and people can check?

Yep.

So we have lots going on on the Hastag website at the moment because we're 20 years old this year, so we are celebrating 20 for 20 for all the support and care that we have provided for families and people living with mesothelioma.

So there's lots of information on our website about Action Mesothelioma Day that covers the whole of the south, but if people are up north or in the Midlands, Meso UK also has lot of brilliant events going on across the country, one of which is turning certain buildings blue in remembrance of mesothelioma patients past and present. So also if you live in the Midlands and up north, then I would signpost you to the MESA UK website.

They have lots of information about things going on.

Brilliant. And we'll put links in the notes for this so people, if they want to pick up the URLs, they can pick it up there and. And we'll put that in for sure.

Brilliant.

Brilliant. Well, it's been really nice to have a catch up.

I hope everyone is well out there and that you've all managed in this quite intolerable heat, particularly with breathing problems and when you're feeling fatigued and it's really hot, that's not helpful at all. So I hope you're all okay and managing to stay well hydrated and cool in this weather.

And we really, really look forward to bringing season two back to you around September time. So please keep a lookout.

We will advertise on social media and we're also hoping to be putting our flyers into most of the cancer centres across the UK for you to access all. Or ask your lung cancer nurse specialist about Breathe strong. So thank you everyone. Thank you for all your support in season one.

We look forward to welcoming you back to season two where we will be bigger and stronger and hopefully,.

You know,.

Provide you with more support and advice.

Brilliant. Thanks, Rachel.

Thanks, David.

Bye bye.