Everything End of Life.

Richard and Nikki Bowdidge: Transforming Grief into Hope and Action for Young Cancer Patients

Jason Season 2 Episode 4

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What if facing unimaginable loss could inspire unprecedented hope? Join us as we welcome Richard and Nikki Bowdidge, parents of the founder of a life-changing charity, a charity born from the heartbreak of their son Tom's cancer journey. Hear their compelling story of transforming grief into action, raising £1.7 million over a decade to support teenagers and young adults with cancer. Discover how they've funded critical research and created welcoming hospital spaces tailored for young patients.

Navigating the waters of loss is never straightforward, but through candid reflections and personal anecdotes, we explore how authenticity and supportive relationships can offer strength during the darkest times. Learn the importance of being real with your grief, discussing death with children, and planning personalized funeral arrangements that honor the unique spirit of a loved one. This segment underscores the power of community support and the healing that comes from open, honest conversations about death.

Fundraising for healthcare and social services presents its own set of hurdles, and this episode dives into the strategies and challenges of managing these financial strains. Discover the impact of skyrocketing demand for social workers and the unpredictable nature of funding. We also highlight the compassionate contributions of organizations such as funeral directors John J Smith and like Co-op Funeral Services, which provide free funerals for under-18s. This episode is a testament to resilience, community spirit, and the relentless pursuit of support for those in need and the unbridled altruism of Richard and Nikki Bowdidge

For those interested in what Palliative care looks like at home there is "The Last Kiss" (Not a Romance)
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Speaker 1:

Hello and welcome to Everything End of Life with me, Jason Cottrell and guests, and today our guests are Richard and Nikki Bowditch, which I think I've now got the correct pronunciation of.

Speaker 2:

Hello.

Speaker 1:

Hello there.

Speaker 2:

It's lovely to be here, thank you. Thank you for inviting us.

Speaker 1:

If you could just tell us for people coming. We are kind of Colchester based charity and I'd be surprised if there were many people who didn't know about the charity itself. But could you just introduce yourselves and tell me a little bit about the charity, what it does?

Speaker 2:

Yep, so I'm Nikki Bowditch and I am Tom's mum and we have been in Colchester most of our lives, so we are very much local, born and bred. Tom was 18 when he was diagnosed with a very rare and aggressive form of cancer. He just completed his A-levels and was just about to go off to university, start the rest of his life or the next stage of his life, and he hadn't been very well the whole of that year. I think we'd had six or seven trips to the doctors and they basically had written down on the notes that I was just a neurotic mother. And then, early september, tom became very poorly and we discovered that he was in riddled with a very rare and aggressive sarcoma called a desmoplastic small round cell tumour.

Speaker 2:

And at that point, yes, for Richard and I the end of the world seemed very close at that point and sort of as Tom went through his journey and sort of everything that happened to him, journey, um, and and sort of everything that happened to him. So the idea of the charity was formed by tom himself with exactly the um wishes and the aims that he said still needed to be dealt with. Um, when you go through sort of the medical system. Um, and so that is what we then went on to do in supporting teenagers and young adults who were living with cancer and I'm richard bodich, tom's dad and chairman of the foundation you both, well you.

Speaker 1:

This charity has now been going for 10 years, 10 years indeed.

Speaker 3:

Is that correct?

Speaker 2:

yes, that is yes, we're celebrating our 10th anniversary um. We've raised, uh, in the region of 1 million 700 000 pounds, which we are absolutely blown away with um, but, as tom said, there was still an awful lot of work to be done um, and we have grown in considerably in size, um, and we now help young people across the country, right up to scotland, across to wales. About 25 percent of our, our help and support goes to our welsh young people because they have very little support um, down to the depths of cornwall. So we we cover everywhere, um, and we also, as well as the fact that at the moment, our, our support packages are what's the most popular thing, the thing that's most needed.

Speaker 2:

We are unusual in that we have two other main areas of the charity. One is looking at research into young teenage cancer types. There is very, very little research done in this particular area. They are very rare and they're very aggressive, but there are still enough of them for their needs. There needs to be research done on it. So we have funded quite a lot of research that has made significant progress, so we're very proud of that, just started a new research project with Sheffield Hospital and also we create age appropriate rooms and spaces in local hospitals. So not just colchester we've done a significant amount in colchester but quite a lot um in london, um sheffield, we've done some where they can be teenagers first and cancer patients second.

Speaker 1:

They can have family and friends very much, very much, yes, that's very much, um, and he was really grateful, I think, for the tct for creating that. You both wanted to carry on and seemingly have really achieved. So, um, you know, from my point of view, uh, this kind of charity should really be butted by the government.

Speaker 2:

Yes, wouldn't that be nice? Yes, there are certain areas. For example, I know there's quite a campaign for a travel fund for young, you know, for families with young people travelling, and actually a large proportion of our money does go towards people having to fund their travel costs because they're extortionate a lot of the time the patients can't travel on public transport because of risk of infection, so they might have to then, um, you know, pay for taxis or petrol etc. Then they've got to pay car park costs, so there's all sorts of things that sort of associated with that.

Speaker 2:

and yes, and I know we're lobbying the government a lot at the moment for them to do that and the difference being between the, the type of furniture that you would get in a hospital that the nhs would pay for um is very different to what we actually want our young people, um. We funded a chair in colchester hospital. That was five and a half grand. That was 10 years ago. The nhs wouldn't have considered being able to fund that.

Speaker 3:

So there are little things you know well, quite big things really, that that we can make a difference to they'll give a hospital a funding budget of, say, for a chair like that, say, a thousand pounds, but if they wanted a more luxurious one like we funded, they have to fund, get funding for the balance from outside and and that's the tough part so sort of very much the. The lack of government funding then puts the pressure on the charities in order to do the funding that really ought to be going into into hospitals directly okay, so the charity's been going for 10 years.

Speaker 1:

Do could you share with me a little bit about how, uh, you, you, it all started, so your normal family life? I'm doing is a level, not so now and again to not get a proper diagnosis.

Speaker 2:

Yeah, it was very frustrating. Actually I was not happy and I do that. When Tom had come home from work on the day that Richard finally took him to A&E I said I wouldn't go because I was sick of being told it was me and that I had you know that I was neurotic, etc. So he took him and they actually diagnosed that. They thought that it was appendicitis and I was like, wow, that's lasted a long time if it's appendicitis. But thank goodness they've discovered it.

Speaker 2:

It was a bit crazy. And then this wonderful consultant came and she felt his stomach. I say to her to this day I don't know how you you disguise the fact of what you were feeling, because she was just feeling his tummy. She obviously could feel it and hid it from us until she was sure. And then she called us in and yeah, then that was just right. What do we do now? Where do we need to go?

Speaker 2:

Um, and obviously we were whisked off to london, to the top um sort of sarcoma center really, with one of the um top consultants, um, and really, I suppose, felt that all was going to be okay. We knew the prognosis was appalling and it still is um, but tom was always adamant he would be the first that he would be cured um and that whilst he was having care and chemo etc. That he would be cured, there would be no question he'd be the first to do it um, and sort of. I think it was about the january. He never really had good news.

Speaker 2:

When we look back we go, there was never actually an appointment where he came out of having good news um, and in january he said to us we, I'm not going to go to university. Now I'm going to set up the charity. Um, I was a school teacher, but primary school teacher. Um richard was obviously in insurance and um you know, the charity world apart from the PTA, was really all that we, we sort of knew um so after he passed away and he said to Richard um, I can't go.

Speaker 2:

Yeah, there is still so much that needs to be done. But he had obviously made sure that we knew all that and, and probably a month after he'd gone, we said what are we going to do?

Speaker 2:

you know, shall we, shall we try this charity lark type of thing? Um and um, yeah, we did. It wasn't very long into the charity, and it grew very quickly that I realized that I couldn't be a good school teacher and a good ceo of a charity at the same time. I would need to give something up, and so I, yes, gave up teaching and then became sort of yes, full-time.

Speaker 1:

One of you has got to be the breadwinner. Stayed, continued working.

Speaker 2:

Yes, yes, he brings the money in.

Speaker 1:

He brings the money in. Yes, we've got a kind of reciprocal thing going on with my message. She does, um, she goes to london and uh, uh, works for a huge bank which is you know, you're very clever, much more clearer than me, I think and I've got a little business that we, we can keep going and we can raise the kids and we can do. So we've kind of and I think that kind of that relationship can work really well.

Speaker 2:

if you've got something, yes, yeah, yes, yes, and you do. You need that. You know it's, it's and I just prepared to do half a job. Of either jobs, it was one or the other. The two were growing too much and I sort of said well, I felt that maybe we owed it to tom's legacy, that maybe this was the path we should be taking. Um, and in fact it was one of my little children in reception that said you're now going to look after bigger children.

Speaker 3:

You've looked after us little children, now you're going to the bigger children and I think also um, just touching on the fact that neither has had any charity background at PTA. It gave us the opportunity to start with a blank sheet of paper and not go into it with any preconceived ideas about what's the right thing to do and have people say to us, oh, that's not how it's normally done, so we just say, okay, why, and we'll do it the way we want to do it. And it sort of seemed to us, oh, that's not how it's normally done, so we just say, okay, why, and we'll do it the way we want to do it.

Speaker 3:

And it sort of seemed to hit a resonance, hit a chord with quite a few people, because Tom had a particular personality and we wanted to try and make sure that Tom's vision and his way he wanted things to be done was carried out, and that is why the charity is probably slightly different to the way some other charities operate. It's a bit or it certainly has been and it's been a bit of an adventure.

Speaker 1:

Yeah, and so one of the things I would like to ask about, because we have only got a few minutes of time. But that's a stressful journey, isn't it? I mean, right from the beginning, even though I hear you are. But you both seem so really positive about you know and I'm kind of guessing that's a personality thing, but I bet it's over the years. There's been moments you must have had where it's like I do you know why? Why are we doing this? Or or even you know happen, we carry this on absolutely.

Speaker 3:

I mean, it's 100, you're 100, right, we, we, sometimes we talk about a facade that we put on um and that and some, and that's sort of. Then the front door shuts and we can, we can go right, okay, we can, um, be ourselves, um, and sometimes that facade is put on for the benefit of other people or because it makes they don't know sometimes what in the early days, what to say to us, um, or how to how to tackle us. And I, I would always be in the case where I wanted people to cross the road to come and see me, not cross the road to avoid me, um, because they didn't know what to say. And I, and I'm not, I'm still want to go to the, go to the pub and have a beer and with my, my friends and and um, I'm not going to sit and talk about tom unless they want to talk about tom or the charity, and and'll talk about whatever the subject is, and that's, that's that's the thing.

Speaker 3:

I think that we have the strength of of each other. I get a huge amount of strength from from Nikki's support, and I think that that makes a difference for us, that we can compartmentalize it and we know that we have our quiet moments and sometimes we have moments when I used to, when we used to walk the dog and have quiet times and suddenly I emotions would come crashing over. But you sort of you learn your coping mechanisms, you learn your warning signals and you learn how to, how to do, how to deal with them and get. Unfortunately, some people don't know how to deal with parents that have lost their child. We know how to deal with parents have lost their child or or whatever, and and they, they, some people don't, and they, they think they think that they might say the wrong thing or we, we, we get a lot of strength from each other.

Speaker 1:

That's the main thing there's an interesting thing I've just been a part of, which is being a human book and um, in that you have to have a book title and my book title was end of life carer, uh, but there were people there with book title of, uh, gay or queer and um, soldier, who was also a trans, you know. And in that space they say ask us anything, it's okay. It's okay to ask the wrong question and if there's something that makes me uncomfortable, I won't, you know, I won't get upset, I'll just help you to see the question in a different way. And I think that you know, you must have experienced that a lot, as you just said people being just nervous to say the wrong thing and offending you, whereas I think probably you know, having spoken to you at length beforehand, you're not the kind of people that get offended. No, no.

Speaker 2:

I think we had sort of I know, know I mentioned this story. My nephews came they were quite young at the time, first big death that they had had and I know my brother was really concerned about what they might ask me and I said it doesn't matter, it's fine. And he they asked me. Certainly my oldest nephew asked me all the questions. You could see that the adults were desperate to ask specifically about the funeral and what would happen to Tom and would he be buried or cremated. And and you know my nephew was just totally straight and I was as straight as I felt I could be with a child that age and explained to him the choices we had to make with the fact that we'd got this body and you know, tom was long gone in his soul. And try and explain that and you could see the adults going oh, don't ask her that. Oh, crikey, and I went why he wants to know.

Speaker 2:

I think this is our problem is, you know, we don't talk about death enough. As I've said to you, and it was very evident, yes, the adults squirmed, but the children were just, you know taking in their strife.

Speaker 3:

I mean, we've got them involved in making decisions about the funeral. So Tom is buried with a lightsaber because he wanted my nephew wanted a Star.

Speaker 1:

Wars themed funeral, because that was what was in the funeral director's catalogue Nice, I love that, but who were the funeral people? May I?

Speaker 2:

ask. We had John J Smith. Yeah, they were wonderful.

Speaker 1:

There you go, they were fantastic.

Speaker 3:

Absolutely wonderful and they were very honest as well, because we wanted they've got a lovely ornate vintage hearse with the glass at the back and Ernie Free, who we've known for a long time through the family. He sidled up to us when Tom arrived at the house and he said we nearly had a bit of a problem because Tom was six foot four and he said we had to make a big. And he said we were going to have to make a slightly bigger coffin where he had to bend his knees so he could get in the coffin. We might have had to close the rear door and hold it with a bungee. Oh my God.

Speaker 2:

That was hilarious, absolutely hilarious.

Speaker 1:

Yeah, that's not what you expect to see going down the street, is it exactly?

Speaker 3:

but the village, and what was beautiful about it is the village came to a halt.

Speaker 3:

We had over 600 people at the funeral and the village came to a halt to pay their respects to to him because they knew him, because he worked in the village in the co-op um, and we worked very carefully and thoughtfully about making sure the funeral was obviously a memorial to Tom and a recognition of the tragedy of the loss, but also very cognizant. It could well have been the first funeral that some of his friends would have gone to, so we made sure there was very much a Tom theme in it. So lots of musical tributes to Tom that people didn't expect, which was Hakuna Matata from the Lion King, which he loved, and he went out to Somewhere Over the Rainbow by Israel, the Fijian or Hawaiian ukulele guy. Beautiful song. But then it changed to King Julian singing. I Like to move it. Move it from Madagascar, which Tom and one of his best friends used to walk into the classroom.

Speaker 3:

Um singing, and somebody came up to me afterwards at the, the reception can't really call it a wake, a reception afterwards and said I have never seen people dancing in a church at a funeral because they were playing that music people. It just made it easier, more comfortable for people and it was a fabulous, fabulous day the teacher that that the class that he would go in.

Speaker 2:

She said as soon as it came on. She said all I could see was tom coming in every lesson dancing till I like to move it. So it was just ways of of going into people's memories of him in in different ways and you know there were obviously a lot of tears but also a lot of very, very happy memories from his very short life.

Speaker 3:

It was the biggest party Tom missed.

Speaker 1:

It sounds like something he would really have enjoyed.

Speaker 3:

We ended up with a Chinese for 35 people in the marquee.

Speaker 1:

He didn't want to go. I think you might need a charity just to raise the money for that. Yeah, definitely, um, but okay, so let's just talk about the charity now, because so tom was amazing. He's got this thing set up. You know he's passed away. You've been doing this over the years, so is there any particular uh memories you have about the help that you've been given to these young teenagers and young people?

Speaker 2:

I mean so many, so many um different stories that have come in.

Speaker 2:

I think one of the key ones for me was when we created um one of our early rooms at colchester and um, it was in the mary baron suite suite and we were told we went to visit it and look at it and they were all very bright and cheerful and sort of just have very contemplative pictures and artwork etc.

Speaker 2:

And the matroness would come up and she said we just had a young person who had refused up till now their curative chemo, which they very rarely say that your chemo will be curative. But this young person could have chemo that would cure him, but there was no way that he was going to go to hospital anywhere to have this done until he walked into tom's room and when he saw this room he went okay, I'll have it if I can have it in here. Um, and we saved his life, I mean, and we probably have saved many others, but that was a particular poignant one in the early days that really got to us thinking gosh, you know, you actually had the choice of being cured, but the actual setting was holding you back from that, um, tom felt very much as wonderful as everybody was in the old mary baron suite in the old esses county.

Speaker 2:

They were absolutely lovely and there's this very striking six foot four young lad no hair walking in and the way their seats went all the way around the outside of the room. They would just watch him come in in shock horror. And tom just said I feel like a goldfish in a bowl. I hate it, hate it. I'm sort of like you know they're all shocked. He didn't want it. So we made sure that that was something that we took away, uh, you know, so that they could have their privacy, because they're very self-conscious, they just if they wanted to socialize with others there, they could. But we've taken that away from them. They don't have to be forced into it and certainly another young girl locally.

Speaker 2:

She has spent um recent well, a few months ago now um a lot of time in his room in colchester and and sadly passed away. We gave her a lot of help, um, but sort of turned that room into hers for many, many months, had her dogs in there, put up fairy lights, you know, and it was just very special for her and her family to have that time in that room um and and sort of yeah, there because, because of the charity so this room is actually in the hospital yes, it is.

Speaker 2:

It's on the west burglar ward and when there are no young people in there then they use it for sort of the sickest cancer patients that need time and privacy as well. But when a young person comes in, the rule was that they take priority and they go in there. It's been designed specially for them but never left empty. So we've had lots of messages from from adults that have used it and said what a beautiful room it is, etc. That have had the chance to to go in there and and this is across the board you know it's so important to them. We did one in london and young girls said you've actually you, let me get out of bed to go into another room.

Speaker 2:

These were for our 19 to 24 year olds and she said I've got a social space I can just go and hang out, whereas before I just stayed in my bed, my curtains all around, I didn't want to get out of bed um and hospital settings that just they can be so exactly personal yeah exactly.

Speaker 3:

Tom was terrified of moving from the teenage ward up to this young adult ward because it was just a ward, it was nothing. There was no, nothing young about. It, just looked like another part of the hospital. But now we've funded this additional space and they've got effectively a breakout area to go and just be young people Be young, yeah, so important, 100%.

Speaker 1:

I want to thank you both for coming along and chatting. Obviously, we would love everybody to donate probably everything they've possibly got.

Speaker 2:

Absolutely.

Speaker 1:

Go to your house, go and just crack on in, but where do people, where can people find you?

Speaker 2:

Right? Well, if they, our website is very easy to use and it's wwwtombodichfoundationorg, and that will give them links to everything. They can find us on all the socials, but the website's the key place to go and they can then go off from there and see what we're up to and share to everybody. We desperately need to get out to more people. We've just looked at our last 12 weeks and, um, demand for our services has trebled in the first 12 weeks, which is is quite scary at this stage. Um, we wouldn't be able to keep keep uh funding at the level we are at the moment indefinitely, unless we have sort of a lot more donations coming in.

Speaker 2:

So that's um, that's us looking ahead and and, uh, yeah, hoping for more support yeah, indeed, okay.

Speaker 1:

Well, this is an excellent uh moment, I think, to end the interview, particularly as, uh, my wife's just brought the dogs home from uh, perfect, so listen, thank. Thank you so much for being so open and, you know, hopefully I can come and revisit this in about a year and look at any specific projects that you might actually have going and you might need some help to get out there. Lovely.

Speaker 2:

That would be fabulous. It would be great, absolutely great.

Speaker 1:

All right. So, richard and Nicky, thank you very much for your time. Thank you, it's our pleasure. So that was the interview, and what a great interview it was, and you might think that that is all that there is, but I've got to tell you I let the recording thing just keep rolling and then Nicky and Richard started chatting about how their funding really needs a bit of a boost, because the demand out there is just getting to be nuts.

Speaker 1:

You know, young people really need a lot more support than the government is able to give them or is giving them. Whether they seem to be able to print money when they need to, I don't know why they can't do it for now. They'll tell me, I'm sure, and tell you, probably in the next election, hey, so and honest, um, and just really tell it as it is. So this next bit is unrehearsed and, you know, unscripted, you know, as most of my podcasts are anyway, but on this particular occasion I thought I would just tack this one on the end so that you can listen to. You know, the the real need out there for donations, for money for fundraising and for a little bit of help that they require. So, yeah, here's Richard and Nicky Ta-da, let's go, you got there in the end oh bless, Perfect now.

Speaker 3:

Yeah, I know, so annoying You're obviously a conductor for your Wi-Fi.

Speaker 1:

Yeah, yes, the dogs. Yeah, I think the dogs are soaking it up. So, yeah, apart from all of that, how is everything else going? So you are still now at the point where you're needing to raise more. It must be a never-ending pot that you're having to fill.

Speaker 2:

Yes, it is, and sort of. We, you know, with other projects as well, we've got to make sure you know we've got pots of money wherever. Um, and sort of. You know, I, I, at the beginning of the financial year, you project as to how many people you want to help and and project where that money's coming from. But because we suddenly seem to have got I don't know about 15 new social workers across the country in addition to the 25 social workers we already had, they seem to have gone on board and suddenly we've had this influx. Um, and I just said today, I'm just going to have a comparison and I went crikey, I think it's something like we've spent 45 and a half thousand.

Speaker 2:

No, again 14 000 already, um, in eight weeks, whereas last year it was just 4 000, and and you know that if the next eight weeks are going to be 14, you project it for the rest of the year. Not possible, um. So you know. But but that's what, that's what we. We have to do is keep an eye on what's going. If we have to halt for a bit, we halt. But then somebody could walk in and say right, you know, corporately we're going to give you 10 grand. That gets us off again, and what have you. So just keeping an eye and making sure we can still continue helping.

Speaker 1:

It's a crazy world where you have to exist really. You know, because when and when I look at this, you know it's the same thing over and over again in every area, from oncology all the way through the funeral care and yeah yeah, that's not the money for people end of life care.

Speaker 3:

The, the co-op funeral services, do a very good thing. Are these under 18s Up to?

Speaker 2:

18.

Speaker 3:

Up to the age of 18, they don't charge for a funeral.

Speaker 1:

I do not know that. I will have to mention that in a future.

Speaker 2:

Up to 18.

Speaker 3:

Yeah, and I know I think Will Quince was campaigning for something when he was MP as well, because I think he lost one of his children or stillbirth. Who was that? Will Quince, the former coach.

Speaker 1:

Oh yeah, will.

Speaker 3:

Quince, yeah, I think he did a campaign of something for that about funeral costs.

Speaker 2:

I can't remember it was for the 18 fund. Yeah, it's a fund under 18.

Speaker 3:

But the Co-op Funeral Services definitely do not charge for an under-18s funeral. That is you know, and that's really.

Speaker 1:

That's the way it should be. I don't know if you know this, but, talking to other people in other funeral businesses, the whole system is unregulated. It's not. You can have a fridge in the back garden and start up your own business, which is a bit of a scary thought. It is. Obviously there's been various um scandals, and the most recent one for I think most people would be stinting them on his hull that was yes, yeah how bad does it have to be?

Speaker 1:

I think I said this to you, you know, for that thing to happen exactly anyway.

Speaker 2:

Yeah, I know that's not.

Speaker 1:

That's not your raison d'etre we'll stick with this one.

Speaker 2:

Use it as hope and comfort.

Speaker 1:

Anything else that I can do for you, just let me know. Drop me a line.

Speaker 1:

Thank, you so much you helped me raise the profile, which is fantastic, brilliant we've only got a little following so far, but it's going to grow, I'm sure. I've got lots of leaflets with the podcast and the book out now and the hospice wanted me to do a bit of a radio thing where we go into different events and ask people to nominate carers for being a professional carer and of course then that leads on to the conversation of how bad can it get, and that sort of thing exactly.

Speaker 1:

So with any luck we'll be able to get your name out there on a few little local radio things as well fantastic, lovely alright, folks. Well, thanks once again and have a lovely evening and you and you good weekend and I think the signal is so good we maybe have to do the whole interview. All right, you would do, wouldn't you?

Speaker 3:

check it, check it, check out.

Speaker 1:

It's not what you said the first time, all right, uh, okay, have a lovely evening and we'll speak all right, take care.

Speaker 2:

Oh, by the way, no, hang on before you go.

Speaker 1:

Before you go I did nominate you for the compassionate um carers award thing, so thank you. So that comes from the compassionate city and that I think on the 3rd of August there's going to be more nominations, so you might hear something back from that oh, that's very kind brilliant thank you so much, see you later bye.

Speaker 2:

Thank you.

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