Episode 28 Transcript:

Tube Challenge Part 1

[0:10] Welcome to the Bereaved Parents Club podcast. It’s a club none of us want to be a member of, but here we are.

[0:18] My name is Tracy and I am a Bereaved Parent to George. This podcast is for all of us to share and celebrate the stories of our children and offer support to each other. Each episode will explore topics that are relevant to us as we navigate the world as bere parents whether your loss was last week last month last year or even last century you are welcome here and whether your child was a baby a youngster a teenager an adult or even a parent themselves you are very welcome here please be aware that this episode will deal with themes of death and loss 

It’s lovely to have Emma with me today, who is Ruby on top of his mum, for a very special part one episode around the Tube Challenge. So welcome, Emma. Thanks, Tracy.

[1:18] Lovely to join you.

[1:20] And I just wondered if you would like to tell us your story and, you know, why you chose to do the Tube Challenge this year.

[1:28] Yes, delighted to. So yes, as you said, I’m mum of Ruby. And Ruby was a completely normal, happy, healthy teenager, really. When heart waves through sixth form, so two-thirds of the way into year 12, she started to become poorly. And up to that point, I don’t think we’ve been to the doctor or she hadn’t been to the doctor for several years. She was loving school. She was loving all the kind of freedom that came with being a sixth form man. She was you know a lovely girl life until the party she had big suits and dreams of going out into the world and making it a better place, um and you know she started to get odd symptoms around kind of april time in 2019 when she was 17, and we went back and forth to the doctor they were fairly sure with stress or maybe it was allergies um by about the third visit when nothing seemed to be getting any better. It seemed to be being a bit sort of popped off by the doctor and I was getting quite frustrated. And I googled Ruby’s center. She started getting a swollen face in the mornings and really feeling very under the weather.

[2:42] And Dr. Google, which I know doctors hate, suggested that maybe it could be a tumour in her chest pressing on a vein and causing the swelling, something like lung cancer. And I suggested this to the doctor and they said, no, don’t be ridiculous, not a 17-year-old. We think it’s probably allergies and stress. And we had an appointment for an allergy test in August. So this was sort of late May time, I think, by now. So we decided to go privately to have a test more quickly um it did show up some allergies but again nothing we did made any difference and to cut a long and rather dull story short, by the eighth visit uh i was feeling kind of increasingly hysterical and the doctor actually referred her for a chest x-ray and the chest x-ray did indeed show an iron-to-inted tumor on her chest and it wasn’t lung cancer but very similar symptoms.

[3:39] It was lymphoma, a form of blood cancer. It was T-cell non-Hodgkin’s lymphoma, which is one of the more aggressive forms of blood cancer.

[3:48] And she got that diagnosis on the last day of year 12, and she was never able to go back into school. So basically, from that point on, she was catapulted into very intensive cancer treatment, because it is a very aggressive form of blood cancer. She spent a lot of time in hospital, had a lot of horrendous side effects. The mainline treatment didn’t work for her kind of cancer. It didn’t respond, so she had to be lined up for a stem cell transplant, which she had. And that all seemed to go quite well. That was by now January of 2020, but the cancer came back very quickly and very sadly she died in May 2020. So also just the height of lockdown since like a long time ago, I think to many people now, that kind of madness of COVID time.

[4:38] But yeah, she died at home with me and my husband and her younger sister in the house with her.

[4:46] And so she, until three weeks before she died, the doctors were reasonably confident they’d be able to save her. But when it came back so quickly after the stem cell transplant, they said at this point, with this type of cancer, there’s nothing else we can do. And I just remember very clearly at that final meeting that we had with her team at the Royal Marsden where she was being treated when they handed us over, to the palliative care team.

[5:14] And her consultant said you know i’m so sorry ruby we just haven’t nailed this kind of cancer yet when it relapses i’m sure we will do in the future we just need more research to find better treatments, and basically in response to that ruby said right that’s what i want you to do in my memory um please donate my savings to cancer research please ask people instead of flowers at my funeral, which we couldn’t really have anyway because of covid please donate to research so that’s what we’ve done, uh that’s been this world focused i think in the six years since she passed away, and the tube challenge is just a very ruby kind of challenge she loved she was a londoner born and bred loved the underground harbored a bit of a dream of maybe who worked for Transport for London one day. And so she would just think this challenge was hilarious.

[6:13] Um so it’s just a lovely thing to do in her memory.

[6:16] Yeah and you’ve raised an incredible amount of money you’ve worked tirelessly as a family with your family and friends haven’t you in ruby’s memory ruby’s honor it’s incredible what you’ve done

[6:28] Yeah i don’t i’m actually not quite sure how we’ve managed it it hasn’t really been very planned it’s just sort of happened quite organically so in a bit of a mad moment i think after our first fundraiser, and we’d have friends around and some drinks to celebrate Ruby and to sort of thank everybody for their contribution towards our fundraising. I think this is when we’d raised about 50,000. Without even thinking about it, I said, right, our target’s going to be to raise half a million because that’s roughly how much the NHS spent on Ruby’s treatment. They pulled out all the stops. We had a shaky start in terms of her diagnosis. But once she was diagnosed I mean the NHS is incredible and I think particularly with young people with cancer they leave no stone unturned, um but you know it wasn’t enough there just aren’t the treatments out there, so I set this half a million pound target, and the way people have responded has been incredible so we’ve had friends family complete strangers had teachers all sorts of people getting involved and it’s just been, it’s been a really lovely way to put the sort of.

[7:42] It’s a lovely place to put all the energy and the kind of anguish of grief to kind of channel it into something that feels positive and something, that will hopefully have an outcome that makes the prognosis for young people diagnosed with this kind of cancer going forwards a bit more positive.

[8:02] Certainly it’s an incredible amount i’m sure that the cancer charity is right behind you and i know that you’ve in the past had some information haven’t you on how they’ve used utilizing the money as well into the research of things which i think is is really really good for yourselves as well isn’t it to know where the money’s going as well

[8:21] Yeah so we set up a fund with the charity cclg, the children young people no sorry just changed the name children and young people cancer group I think that’s what they’re called there, and they’ve got a brilliant system where you can set up a fund in your child’s memory or in some cases it’s in celebration of a child whose treatment’s gone well, and the money that you raise is basically ring fence for research you know you can choose how it’s spent so we said research into this particular kind of cancer, and because it’s a big charity they can kind of arrange it so that all the money you raise goes to research so they put their overheads and everything covered elsewhere and they have, a system for putting out calls for research grants and for vetting those so that they know that the money is going to a really good place so we funded our first project in 2022, that’s a team at newcastle university and the money from rubies fund actually paid for a dedicated researcher, and they very kindly let Ruby’s younger sister Tabitha go and do some work experience with them so she spent a week with them in, 2023 actually in the lab with them seeing the work they do which was fantastic for her she’s, She’s now at med school. She’s now a student at med school. It’s a really great thing for her to be able to see.

[9:47] And then since then, the funding has contributed to another four projects where they’ve combined funding from some of the different special name funds together. So that’s really nice as well because you’re part of this community of, mostly bereaved families fundraising in their child’s memory and united by this common purpose of trying to improve their prognosis for children diagnosed with cancer going forwards.

[10:14] Yeah, yeah. Ruby will be very incredibly proud of all of you for everything that you’ve achieved as well. But I believe that you’ve done the Tube Challenge

[10:24] before. Is that correct?

[10:26] So I did it, so Tabitha and I did it, just the two of us, in August 2021, so just a year after Ruby died. And it was still COVID times. At first we thought we’d wait until COVID was over, but in those days nobody knew whether COVID ever would be over. So we decided just to go ahead with it. So we had to do it wearing face masks. And some of the tubes, so some stations were closed because of COVID. So I’ve always said I’d love to go back and do it again when the whole network is open. So I think Mill Hill East and Heathrow Terminal 4 were both closed. And then since then they’ve actually opened two new stations. So Nine Elms and Battersea Power Station a little bit harder, and there were a couple of friends who’d said oh you know if you ever do that again I’d love to come and do it without really I think knowing quite what was involved so I thought well, let’s give it a go and put the call out and it’s been amazing actually to have such a fantastic response I never imagined I thought, We might get 10 people because, as far as I can tell, the biggest team to do it before had been eight people. But we’ve got 24 at the moment. Fingers crossed if everyone’s fitting well and healthy. By the way, we’ve got 24 people, which is going to be incredible.

[11:46] And it’s fantastic

[11:48] To have you joining us, Tracy. Yeah.

[11:50] I think when you first went out with it, I’m sure it was something like New Year’s Day or the very beginning of January. Am I right in that? Was it the very beginning of January? But the New Year’s resolution,

[12:00] Yes. It’s like you grab people where they’re like, a new year and all the possibilities that go with it.

[12:05] Yeah, and I remember reading about it and you really inspired me and how you’ve championed Ruby and everything that you’ve done in the last few years as well, Emma. And then when I saw it, I think in January, and I’m sure it was, very beginning of January, I thought, oh, that’ll be good to do.

[12:22] And it seems far enough away that you couldn’t really quite imagine it as a possibility, I imagine. But no, it’s lovely to have you joining us. It’s lovely. You know, Bobby Carrey, which was us too. It’s a wonderful thing.

[12:34] Yeah. Yeah, he always loved, I mean, that was one thing. Obviously, I’m a northern ever. He used to love going to London and he loved going on the underground and he

[12:41] loved traveling around. So, yeah, it will bring back fond memories for myself as well. So what can we expect then of Friday?

[12:49] Oh, my gosh. Well, so we’re all going to be starting at Amersham, which is way out on the metropolitan line, not really in London at all. Catching the first train at 5.22am. And then, so one of the things, and this is one of the reasons it is such a challenge, because if anybody who travels on the London Underground Network regularly knows, many things can happen. Trains get stuck, trains can break down, they have to temporarily close the line. And we’d planned this for a Friday, partly or largely because you get a night tube running on some of the lines. So you’ve got a better chance of getting around the whole network. But they’ve announced that the Piccadilly night tube won’t be running on Friday night because they’ve got some maintenance work. And that was going to be, well, this is going to be the last line we end on. So we’ve got a slightly harder challenge of getting out to Heathrow by midnight, which will be 18 and a half hours after we’ve started. We’re not sure it’s taking any longer than that, but it is going to be quite tight. So…

[13:55] Basically, we just have to have all fingers and toes crossed that all the lines run smoothly, that nothing gets horribly delayed.

[14:03] But I think also the thing to really stress is that the main thing about the day is having a day together, remembering Ruby, you know, just celebrating her life, really, and not take it too seriously. We’re going to give it our best shot but what i really want and what i really hope is that people have a real laugh doing it yes i’ve got one one friend who’s going to do it dressed as a pigeon.

[14:33] And she thought that would be funny so um we’ll just have a bit of a laugh yes when we did it last time, we couldn’t complete the whole challenge because the circle line went down and so we had to make that split second decision were we going to wait and see if the line came back up again but if we waited we probably weren’t going to make it out to Heathrow so we had to skip a station and, and get you know we wanted to get to the end so, realistically the chances of any of us actually getting through every station is probably fairly slim but the The key objective is just to come together, have some fun. And we’ve already raised over £15,000, which is amazing.

[15:15] Yeah, that’s really good.

[15:16] Really excited.

[15:18] Brilliant. Brilliant. And I’m so glad as well that your going to tell us where, the toilets are.

[15:25] That’s always people’s first concern is, but what about the toilets? Actually, it turns out that Transport for London organized a very lovely A3 map. If anybody needs it, if any of your listeners ever worried about finding a toilet on the underground, you can call Transport for London and they will post to you an A3 map that shows all the toilets marked. And there are more than you might think. So I remember worrying about that last

[15:49] time, but actually that was fine. I think the main challenge last time was just the sort of tiredness and slight disorientation by about 9 10 in the evening i really wasn’t quite sure yeah where i was or what was going on or you know you’re kind of running on autopilot um but it was an incredible thrill to get to the end yeah.

[16:10] And we’ll all be wearing t-shirts with ruby on and a donation code won’t we so hopefully they might still get that total up on the day as

[16:17] Well yes that’s what i’m hoping so yes if anybody is on the underground on the day on friday the 30th look out for us and tune us on.

[16:26] Yeah definitely definitely so we’ll have a before photo and then hopefully we’ll have an after photo as well at the end

[16:34] Yeah we’ll definitely have the before photo the after photo might have to be a bit of a photoshopping together, because what i’m expecting what people on this challenge ranging from age 15, super fit teenagers, up to mid, late 60s. And some of the team are going to be quite competitive and very speedy. Yes. Might get there quite a bit earlier than some others. So we’ll have the before photo, we’ll have a series of after photos, and then most of us are getting together for lunch. Lovely Wagamamas are sponsoring us and they’re giving us a celebratory lunch afterwards. So for everyone who can get themselves up and out of bed after that very long day, we’ll be getting together at Wagamamas Marble Arch to celebrate having completed it.

[17:24] Oh, that’s lovely. Yeah. So I’m really looking forward to it. I mean, the reason we’re in small groups, isn’t it, I presume, is so because obviously you couldn’t manage a big group because of the way, how quick those doors shut sometimes when you get to a platform, you would definitely lose people,

[17:38] Wouldn’t you? yeah we we just couldn’t couldn’t stick together as a group all the way through and i think you know someone’s gonna need to go to the loo, someone’s gonna have to go and get a coffee if you waited for the people you wouldn’t have a hope so the idea is start, at the same time in the same place we follow the same route but the chances are we might you know some people might go ahead and then we’ll catch up with them yes but i imagine we’ll get a little bit spread out through the day. I don’t, I don’t, I’m not really sure how that all worked or to sort of see how it goes. Yeah.

[18:12] Yeah, I’m really looking forward to it and it’d be really good if we can get back together as well afterwards. Not the day after or anything like that. Let’s have a little bit of a break.

[18:22] Yeah.

[18:23] But it’d be really good to talk about it sort of post-event as well.

[18:26] Oh, that would be fantastic.

[18:27] And give another update and, you know, and how it all went and, you know, the stories that maybe people would tell are people that they meet you know hopefully we’ll have some conversations with people on the underground

[18:38] As well i’m hoping so i’m hoping particularly isabel dressed as a pigeon should be a conversation and, then we’ve got anyone who sponsors us if they name their favorite tube station, in the comment then they go into a prize draw to win a painting on that, and it’s really lovely actually to see all the stations being nominated and the reasons for it yes we’ve definitely got a bit of a South London bias at the moment. So we need some more votes for Northern tube stations. But yeah, it’s just quite entertaining just to read through the Just Giving comments and see what’s put down there. Mornington Crescent and Elephant and Castle both seem to be particularly popular, I would say.

[19:21] Well, I’m going to keep going over the route. I did actually go through the whole thing this morning and plot it all out of the Tube app and plot out all the Google Map routes between, you know, that you have to get off and then get, you know, and get to another station. I thought I’m just going to be organized. Yes. As organized as can be.

[19:38] We did a final check today on the train with my daughter who I did the Tube challenge with last time. We just did a double check. And I think the only thing I would say is that that is the planned route. Sometimes it has to be changed because a line goes down or something goes wrong and that is again one of the real challenges is trying to recalculate how, to get through as many stations as possible in the required time so i love i love to plan i love to know exactly what i’m doing and i would love for us to be able to stick to the plan but it’s quite possible we might not be able to yeah, tried for for anything to happen really fingers crossed fingers crossed it will always Fingers crossed.

[20:18] Yes. Fingers crossed. Yeah, I’m sure it’s going to be an amazing day, an amazing time to remember and celebrate Ruby as well.

[20:27] Yeah. Yeah, that’s the main thing. Yeah, really like that. 

[20:31] So thank you so much, Emma, for joining us. And let’s catch up, host the event, and give our audience an update on everything. Yeah, and maybe you’ll inspire some new Tube challenges next year.

[20:46] I do I mean I would highly recommend it as a bit of a fun it’s a challenging event but it’s not like running a marathon you could be really fit but there’s a lot of thinking as well but my absolute pleasure Tracy very excited to see you on Thursday night and really looking forward to it lovely.

[21:02] Thank you this episode is dedicated to Ruby Thank you for listening. We would be grateful if you could share the podcast amongst your community, or if you could give us a like on the podcast platform you’ve listened on. Or you can follow us on our socials. We are on Instagram, Facebook, YouTube, Threads, and TikTok. Or for more information, you can visit our website, bereavedparentsclub.org.uk. Thank you.