Woman's Hour - When your child has cancer...

Episode Date: February 27, 2020

Childhood cancer is thankfully rare and the past few decades have seen dramatic improvements in the outlook for children diagnosed with the disease; today more than three-quarters survive. We hear from three mothers – Sam, June and Jenny - whose children were diagnosed. How did they cope day to day watching their offspring struggle through endless treatment? How does it impact the rest of the family? And how has the experience affected their response to the world around them?Presenter: Jenni Murray Producer: Kirsty StarkeyInterviewed Guest: Sam Waters-Long Interviewed Guest: Jenny Grenfell-Shaw Interviewed Guest: June Williams Interviewed Guest: Helen Campbell Interviewed Guest:, Anna Regan

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BBC Sounds. Music, radio, podcasts. Hello, Jenny Murray welcoming you to the Woman's Hour podcast for Thursday the 27th of February. Good morning. You may remember a couple of months ago we talked to a young woman, Ellie, about her treatment for cancer and how hard it had been. She was 19 and she'd agreed to discuss her illness and her recovery when the Teenage Cancer Trust had released a report explaining how the management of cancer in young people often means the fertility of 15% of patients will be impaired,

but they're often denied any proper information about what the effects will be. It led us to wonder how parents manage to deal with the frightening news that their child has cancer. Would they be prepared to hold back on treatment to give their child a chance to express an opinion on how they want to proceed or would they be so desperate to save their child's life that they will rush into making decisions on the child's behalf and how do you cope with standing by and watching your son or daughter suffer? Well, today we look at this question from the mother's perspective. Childhood cancer is rare, and in the past few decades,

there have been great improvements in the outlook. Today, more than three quarters of children will survive. In a moment, we'll hear from three women who've been through the anguish of supporting their child through diagnosis and treatment. First, I'm joined by Anna Regan, who's a social worker for the charity Click Sergeant, and Dr Helen Campbell, who's a consultant paediatric haematologist at the Royal Manchester Children's Hospital, and she joins us from Manchester. Helen how common are childhood cancers? Morning so thankfully they're rare they actually only make

up you know less than one percent of all cancers that are looked after in the UK however they are approximately 1,000, just 1,500 cases in the UK per year. And a child under the age of 14 possibly has approximately 1 in 500 chance of developing cancer. So thankfully rare, but of course when they do occur, very devastating. Now 50 years ago, three quarters of children diagnosed died. Now more than three quarters survive what's changed in that period so a number of a number of things and i think when you look at the the graphs of survival the improvement is is gradual and continues and continues to improve and it's a combination of earlier and better diagnosis and that's a combination of awareness and also the actual

testing so the imaging that we do and the histological diagnosis so the way we diagnose cancer has improved and the way we can individualize the the actual cancer and assess the exact classification of the tumour so that the correct treatment is given. With treatment itself again a lot of the drugs that are used are have been used for many many years but the combination of the drugs that are used the way they're used the doses all of that has improved and a lot of that is on the back of a number of clinical trials and of survival data and collecting this information and improving year on year and some of this is to you know we tailor treatment so in some children with

particular diagnoses and features about their individual cancer they need more treatment and in other children in fact you can reduce treatment and reduce toxicity. Now Anna you work as a social worker for Click Sergeant what role can you play in a family's life during this period? Yeah, good morning. So Click Sergeant is a national charity, and we support children and young people between the ages of 0 to 25 and their families throughout their cancer treatment. So that's from the point of diagnosis all the way through.

Now, my role as a social worker is to provide emotional support and practical support from the point of their diagnosis throughout their treatment and following treatment whether that's helping children and families get back in and find their new normal or whether that's through supporting children and families at end of life or bereavement support. Anna and Helen thank thank you both very much. Don't go away. We want you to stay with us because we'll speak again later. But earlier I spoke to three women whose children have been diagnosed with cancer. Jenny Grenfell-Shaw is a GP whose son Luke was diagnosed in 2018

with an aggressive and rare sarcoma at the age of 24. He's now in remission. June Williams' daughter, Jodie, had Ewing sarcoma at the age of 18 and she died last year. Sam Walters-Long is the mother of Ellie, with whom we spoke earlier this year. Ellie was diagnosed in September 2015 with alveolar rhabdomyosarcoma. It was stage 4 when she was diagnosed. Just explain what that is.

What kind of cancer is it? It's a soft tissue tumour, and it was in her butt cheek, top of her leg. Ellie did actually have a lump, but she didn't say anything about that. It was leg pain, all stuff like that. So we took quite a while for diagnosis, but our local GP thought it

was a perineum abscess so we went to the GP she had about two weeks of antibiotics and then I took her back in because school had started it was a blistering hot day and she tried to take her coat in so she could sit on it because she couldn't sit on the actual lump and I said this is ridiculous so we went back got sent straight to the hospital, had the operation, not an abscess. We don't know what it is. A week later, I was pulled into a room, told that we think it's cancer.

I thought Jeremy Beadle was going to come around the corner. Like, you know, it was unbelievable. We went to the Nottingham QMC. We had a week of tests and then by the Friday we were told that she had a stage 4 cancer and she had a 1 in 5 chance of making it past 5 years. But so far she's defying the odds and we're nearly 3 years in remission.

June, what about Jodie? Jodie was 18 when she was diagnosed with Ewan's coma at first just aches and pains for a few months but they thought it was a little bit of PTSD because she was at the Manchester Arena bombing so from September to November it was just a process of elimination it wasn't until December 5th that she was actually diagnosed with Ewing

and it was classed as global then, so it was in a skull right down to her feet. And they put her straight away on intense chemotherapy. Ewing's a coma, the tumour's on the bone, so there was lots of blood transfusions and platelet transfusions and she fought it like a gladiator for 19 months and passed away in June last year but the diagnosis for someone young is quite hard you know they just plod along they just they're just a few aches and pains and if they're inactive anyway,

the last thing when they go into a GP is for the GP to think of something so rare and unusual. So she'd probably had it for a while before the initial diagnosis. Jenny, what about Luke? Yes, not dissimilar from your stories in a way. Luke was 24 when he was diagnosed. That was in June 2018. He'd been getting a little bit of an ache in his shoulder,

but he hadn't thought too much of it. It didn't seem to be bothering him that much, and he wasn't a great one for going to see the doctor. He did eventually see a physio, but she didn't spot there was anything seriously wrong. And so it took a long time for him to eventually find a lump, by which time it had also spread to his lungs, and he was given a very grim prognosis in June 2018, stage four again.

He's responded better than they thought he would to treatment, i.e. he's still here and actually is in remission at the moment and is well in himself, and you'd look at him and you wouldn't think he'd had a problem. But he had chemotherapy, he had surgery, he had radiotherapy, which he was extraordinarily determined throughout to keep active. He had his turbo bike in the room when he was having the chemo. He always cycled to and from the hospital when he had his chemo.

He was really determined to keep going with his life. What was it like for you the moment you discovered it was cancer? We were on a Skype call at home and he said he found this lump and I was on the GP myself and I knew then. And then when he came back, we flew him back from Russia, I could see, before he could, I could see what it was. And it was, I mean, totally devastating. You think your world has come to an end and it was, I mean, totally devastating. You think your world has come to an end, and it was devastating. What about for you, June? When Jodie was first diagnosed, like I say,

the whole world stops for a minute, and you think the worst. The one thing I didn't do, which I'm really glad of, was Google it. I said to people, please don't Google things because they come up with the worst case scenarios and all these things and actually look at it properly. If you want to get the medical, you need to stay in a positive frame of mind. And Jodie took it so well all the way through. It wasn't until sort of after you passed away as a parent

that you think I was looking after her the whole time when actually how she handled it, she looking after her the whole time. And actually, how she handled it, she looked after us the whole way through it and we just sort of bounced off how she was. And she wanted the cancer to be second. You know, she didn't want her whole life to be revolved around that. She wanted to fit the cancer into how she could be in her life. And, Tam, what do you recall of the moment you

realized what it was um unbelievable was like the first thing you know catastrophic i likened it to like a bomb going off in the in the middle of the family dynamic we've got five kids at home and you know they all have like different things going on and the prognosis was quite dim at the time as well and I kept a lot of Ellie's prognosis away from her and in the beginning and it was like a day-to-day thing I did google and one of the things we do now with Ellie with her blogs and stuff is to show that there's a life outside of cancer because a lot of things you find online are doom gloom anything to do with cancer is going to be dead and all this sort of stuff but it's not quite like that and actually our lives are very very different because of cancer and i can't imagine what they'd be without it

but why did you decide not to tell her how serious it was well it was a bombardment of things like she will she will most definitely be infertile they said she had one in five chance of survival how do you tell your 14 year old that is laying in a bed that they think that she's got 20 chance of being here like in the next few years so like your son as well the determination and jodie right from the beginning she just believed she was going to kick it and i I think that strength and that determination, and I've seen it in a lot of cancer kids, I think sees them way past some of the stuff they have to deal with

most adults couldn't cope with. How much did you try to shield Jodie, June? Not at all, really. I mean, Jodie was 18 when she was diagnosed, and as a parent, actually, she's 18 and she can actually, if she wanted to, say no to certain treatments, and she was very needle-phobic. So trying as a parent to then have to persuade an 18-year-old, yes, you do need this treatment, became quite difficult at times.

But we did have a ronical sense of humour, and especially as kids and young adults, when they're diagnosed diagnosed it's almost like the whole world gets taken off them Jodie had to give up college she had to give up her jobs and I don't know how it would have felt had Jodie been younger but for me it was about giving Jodie as much of control over what she could as she possibly could and that was with the treatments and asking the questions she needed to ask. Now, Luke is older and as a mother and a GP, how difficult has it been to accept he's an adult, it's his choice? Yes, I think we had an early discussion with Luke about how you can't control what happens to you, but you can control your response to what's happened. And Luke's been utterly determined to live his life richly and fully

for as long as he's got, and we've been trying to support him in doing that. It's interesting, he wants to get on with his life, and he's wanting to do that, and he wants me to do all the stuff to do with the cancer, basically. So as far as possible, I'm the one who does all, manages all of that stuff with the doctors, with the nurses, with the scans, just sorting it out.

So he has a limited, as close as possible, anything to do with the cancer. Obviously, during treatment, that's not possible. What's been the hardest part for you in supporting him? Well, the hardest part was when he was in his first cycle of chemotherapy. He was in hospital, and my husband was with him, and I was at home. We got a knock at the door at four

in the morning with two policemen to tell me about the eldest son John had had an accident in the Lake District and had fallen to his death. That was the hardest thing. So Luke was scarcely into treatment with a life-limiting condition and his only brother, his only sibling had died. How did Luke cope with that?

Well he's now doing this memorial bike ride, Bristol to Beijing, bristol2beijing.org, which is going to be a memory of his brother John, who was also an enthusiastic cyclist. So he's really trying to, I think, honour John in the way he lives. How strong have you had to be? I mean, it's unimaginable what you've been going through. Well, Luke's been the inspiration. He's the one who's got me through it because, I mean, to give you some examples,

he did a half marathon while he was on chemotherapy. He knew when he had his surgery he wouldn't be able to do swimming because it was under his shoulder blade, a major surgery. So he did a half Ironman in Egypt a few days before the surgery and came second. He's just been so determined. And now he's doing this Bristol to Beijing bike ride on a tandem to take other canned livers on the back. man in Egypt a few days before the surgery and came second. He's just been so determined and now he's doing this Bristol to Beijing bike ride on a tandem to take other can livers on the back. He hates the term cancer survivor. You can't say you're a survivor as these two mothers know. You

can never say that. So he talks about can livers, living richly and fully with cancer, being active, embracing the life you do have and he's been such an inspiration to me about how I live and he talks to schools and he says you know if you if you died tomorrow would you be happy with how you'd live today and that's a real challenge to me every single day I'm not any stronger than anybody else I'm just in a position that most people don't have to face but I have Luke and he's amazing both of you are going through terrible times and we cannot compare one terrible time with another. But to lose one son and to have your other one suffering from cancer,

it's almost impossible to even think about. But June, what was it like for you trying to support your child? I think the worst thing for any parent is seeing the child in pain because at times Jodie was in so much pain she couldn't have a blanket on her. But people do often say, oh, aren't you being strong? And I couldn't do what you was doing. But you actually find the majority of people when put into that situation they will shine and when you have a child who just shows such great spirit and love and warmth and I didn't hear Jodie once say it's not fair or why me like I said I always thought I was looking after her but actually the way she was

enabled me and the rest of the family and friends to be able to get on with our lives and help them not just continuously think about the cancer all the time. We always said you can't have a bad day if you have at least one good moment in it. And if that good moment's just a little bit of a laugh or a cuddle or anything, when you're in hospital for weeks, we just go on midnight walks around the hospital. We try to do that now.

I always say to myself, I can't have a bad day if I can have one smile. And she helped me accomplish that every single day. And she still does now. Sam, what's been the hardest thing for you? I found it the hardest after treatment. I likened it to going out of an aeroplane without a parachute because while you're in treatment, it very rigorous it is appointment after appointment Ellie had

intensive chemotherapy she had maintenance chemo she had radiotherapy for six weeks it was one thing after another because you were doing something and then as soon as that stopped that is when you know I got massive anxieties over especially the other children things that i would have ordinarily solved with cowpole all of a sudden wasn't something i could solve with cowpole i would to see the the impossible in in everything and everything became sort of scarier i suppose but like you guys have said as well ellie didn't see herself as defined by cancer she wasn't a survivor and she never said why me she was like why not me why was she any different special you know where did these kids get that amazing strength from and you know talking the kind of sense that you wouldn't expect from

a 50 or 60 year old where did it from? I think it's the youth as well that really does power them through. I think they also feel so invincible. And I found this a lot, especially with children and young adults. They hate being called brave. Jodie hated that. She was like, I'm not a firefighter,

I'm not a police, but we started calling her a gladiator instead because they don't have any choice. They're chucked into a ring, you fight for survival. So it was her way to want to try and change that word another thing that jodie always found if you're having family gatherings you'll go up to another teenager go house things how school you know if you've got a boyfriend girlfriend straight away people used to hone in on jodie

and i was almost like how's your cancer yeah you know a head till it's like no i'm i'm still joe so i become a-bear actually quite often then, just trying to steer people. And, you know, you do sort of become even more protective of them. How does Luke respond to that kind of thing where people come to him and talk to him about his cancer rather than his fitness and his cycling? Well, it's interesting, Jenny, because he started 1st January,

so it's his Bristol to Beijing bike ride. And he's been taking canned livers, other young people and older people living with cancer on the back of the tandem. And he said one of the harder things is that some of them want to talk about their cancer. And actually, it's the last thing he wants to talk about. He wants to talk about anything, but that's something he can't escape. But actually, he wants to put his focus on positive things. The message he wants to spread is about looking at what you can do not to be limited by the diagnosis of cancer really with ellie in remission now how much stress are you still constantly under oh loads like i've got anti-anxiety meds and stuff i'm feeling from

the sort of ptsd of it i can't seem to sort of get out of that cycle I think even if she gets when we get past five years I think it's still it's there you witness something so the kids that we've lost that we knew the funerals we've been to we went to one with an eight-year-old that we're really close to it's it's horrifying it's the stuff that you see on the tv and you think it's never ever going to happen to you but you said about being brave and stuff Ellie hated that as well because it wasn't a choice it was something she had to do, it's like Ellie's a twin and when I had the twins they were like oh my god

how can you cope with twins, it's not a choice you've got twins, you get on with it and Ellie's been very much like that just get on with it June, you must miss Jodie dreadfully I miss her terribly every day. You can be going about your day being normal,

and I always call it a bullet of grief. Especially at work, you can just be doing normal things, and then all of a sudden this bullet of grief will just hit you out of nowhere. And sometimes you'll try and disguise it or run to the bathroom, and sometimes you've just got to let it go. It might only last five minutes, but just coming to a place go it might only last five minutes but just coming to places like this and talking about her and just being able to share her incredible story

it does help but like you're saying it wasn't until just recently you realize and I don't know how other parents and carers feel it's not until after the event I know obviously we lost Jodie but it's not until after the event that you actually start thinking back the trauma that you've been through the actual, the treatments we had 19 months of intense chemotherapy radiotherapy appointments blood transfusions

and it's not until a few months afterwards that that starts to sink in not just the trauma of the cancer all of that, being able to juggle your other children your work, your everything and it really does hit you and take you back. Exhausting. You must have been exhausted. Yeah, you are, but you do try to be as normal as possible,

and the Teenage Cancer Trust was brilliant for that. You have your own room as an older adult where I was able to stay. I stayed with Jodie every single night, whether it was on a bed or a chair or stood up if they have to. They do make you understand as well at 18 or at 24 they're still your children and your children still want their mums as well or their dads or their parents or their carers. Jenny where has your support come from? Mainly from my friends actually. I've got two particular Liz and Kay who I've known from school days and many more friends. You know who your friends are when things like this happen, you really do.

What sort of response have you had from family and friends, Sam? We were inundated at the beginning. Everybody, even people we didn't really know, were there. And then that peters off really quickly. And especially with earlier as well, friend groups, they're there and then they're not and I've found one of my best friends now Leah she's also a cancer mum our friendship has come from understanding what other people go through and the same with Teenage Cancer Trust as well I said to Ellie really early on I can't take it away from you but I'm going to be at every appointment I'm going to be there every appointment. I'm going to be there every single night. I'm going to be at every scan.

And I can't have it for you, but I'm going to damn well be there for every bit. And I think that gave her a strength. But I do suffer off the back of it. The stuff that you can't unsee, you absorb it for them. You can't unabsorb it. The conversations you have to have, you know, you just can't ever wipe it. And it's not until months later that you think oh god that conversation is just coming to my head because when you're living it you're just living it and you're just waiting for that bad bit of chemo or

that bad poorly to just pass so you can make the next bit of good memory we called it the new normal i remember leaving the hospital after she was diagnosed me and ellie's dad aren't together and he did a night at the hospital to give me a break, and I sobbed all the way home. And I was like, how do I live with the knowledge that she could die, that I might lose her? And my other half said to me, we can't live like we're going to lose Ellie.

We have to live like every day as if she's going to be here. And that's very true. Another cancer dad friend of mine mine he said he's glad that he felt like that with his daughter because she passed away and they didn't want to be waiting for her to die they wanted to cherish every moment because nobody knows when their day is how have jodie's siblings coped she's got an old sister lauren and a younger sister called robin jodie had one of the darkest sense of humours that you could ever imagine and she often joked about her cancer

and her sisters have developed that dark sense of humour as well especially after Jodie's passed away and Jodie's answer was always if people feel uncomfortable that's theirs to deal with she says I'm trying to make light of what I've got I'm trying to get on and if I can have a laugh and a giggle

then I will and her sisters have taken that on board if I can have a laugh and a giggle then I will and the sisters have taken that on board as well but if they were making harsh jokes that must have been difficult for you well Jodie because of her dark sense of humor all the way through it she often used to make me cringe but like Jodie stop it and she and then she'd used to giggle even more and to be honest when you see your children laughing however that laugh comes when something's so harsh you know there are going to be times when that laughter seems so far away and that's why we did the you can't have a bad day if you have a good memory in it sam what about ellie's siblings especially a twin yes well that was very difficult i'm trying to think how far ellie was into treatment but it

was only about two three months and early on I expressed an interest of getting Livy checked because they were twins so one is definitely ill, what about the other one? And I took her in for an appointment to have her checked over and Ellie's oncologist touched Liv on the arm and Liv flinched and pulled her arm away and we realised that she'd been self-harming all the way up her arm and Liv flinched and pulled her arm away and we realised that she'd been self-harming all the way up her arm and she sort of broke down in tears we got her a counsellor but then off the back of that she started having an eating disorder as well so we were doing eating disorder clinic we were doing chemo and I think Livy was suffering from quite a lot of guilt her littlest brother was diagnosed with dyspraxia and he was having problems at school and it it felt very much like

can I take any more but how are they now they're all brilliant now Olivia's doing really well she's trying to get a tattoo apprenticeship obviously Ellie is trying to get into medicine Bailey's thriving at school and Corey the eldest is at Coventry Uni and they all have a seize the day attitude and I think they're very resilient and my stepson James he suffered really badly because he felt at the beginning we lied to him because we didn't tell him straight away how ill he was and he suffered mental health wise as well. Jenny as someone with medical background, as well as being a parent who's involved in all this, how would you say people should handle it? How open should we be with our kids about these kind of things?

I think that's a really good question, and there's no right or wrong answer, and it does depend a lot on the age of the child as well. It used to be that there was a kind of doctor knows best and doctors were quite keen to withhold information. Now I think it's gone a little bit too far the other way. There can be a tendency to feel we've got to tell everybody everything, patients, and I think that's not always appropriate either. I think you've got to be really listening intuitively to the child and what they're ready for. And you never know, Jenny. People will talk about predictions or prognosis as though it's some kind of science,

but you never know. I'm a doctor, I've been a doctor long enough to know. So often you get it wrong, you think someone's about to die and then they're there five years later or the other way round. So I think we have to be very guarded about what we say and go with the the child June what impact has it had on your other relationships besides with your children at the moment I've tried to go back to work and just try to be as positive as I can and live every day just sometimes getting up is just it's just a battle in itself but I've been really really lucky that I've been surrounded by great family great friends and they're the ones that keep me going and especially my girls

I don't know if this is appropriate but I went to the GP and she told me that we should be having sex more and I looked at her like she was crazy my daughter is definitely ill that's the last thing that it feel like and I found that it drew us all closer together but I found relationship wise as husband and wife we weren't husband and wife anymore we were like clocking in and out yeah yeah yeah he was he was working away when we were home and then when they were in hospital he was at home looking after the kids and family again a lot of them were very good in the beginning and then it was just us I just think you just get on with it but it is very different it makes you realize who the ones are and it makes you treasure your relationships Ellie's been in remission I think now for nearly three years yes

in March does the worry ever go? No. Ellie's very good. You don't know what's going on in Ellie's head. Ellie's a go-getter. She's not letting it cancer define her. She's not letting it hold her back. And I don't know whether I try and take on a lot of that, but I know what I saw and what I heard, and I can't unsee it or unhear it. And I do take it round with me like a grey cloud.

I'm hoping as we go on that that will diminish but I don't think it will fully ever go away but in the same sense it makes you treasure things more it makes you stop and look at things a bit differently and make the most of stuff. How has this all changed you Jenny Jenny? Because professionally, you must be hearing from lots of other people, very difficult stories. You're a GP. Are there times when you think, oh, for goodness sake, shut up, you've got no idea what I'm going through? work after both John's death and Luke's diagnosis I didn't get back to work for a year and I thought at the time but I would never get back to work I never want to be a GP again but I am working again now and it's interesting how you you just put on your GP hat and you go to work and it's an act it's performance and I find that for the most part I can put that all to one side and I can be Dr Grenfell and it surprised me and surprises me how the brain can compartmentalise. And you can be as sympathetic with your patients as you ever were?

You'd have to ask my patients, wouldn't you? I think we would have to come and ask your patients, yeah. How has it changed you, June, to have gone through what you've been through? I've always tried to be a positive person and just lately sometimes it really does sink in what's happened and you do sometimes want to stamp your feet and shout, it's not fair. Do you just want to or do you do it?

Sometimes I do it, yeah. Sometimes I do have a little bit of a jump up and down and say it's not fair. You have a cry and a scream and shout up to the universe and say, why me? And then you pick yourself back up and you go, why not me? And you spoke a bit about work. Going to work for me was my little bit of me.

Some people can't, but for the first part of Jodie's thing, I went to work and Jodie encouraged it as well. She encouraged me to do a lot of things, go to the gym, go swimming, find a little bit of yourself to do whatever that is because Luke's doing exactly the same with you isn't yes he's keen for me to have a life as well and as him absolutely and Jodie paid for me to have a CBT license last April I don't drive but now we're riding a little moped something that I'd never do never too old to start doing that so two weeks ago i was on the back of luke's tandem on his two-paging ride yeah yeah there will be people listening to this who are going through the sort

of difficult times that you have all been through what would you say to them about how you think is the best way to cope with it jenny i think to start with, I felt very isolated, very alone, very afraid. But actually, Teenage Cancer Trust and Click Sargent were two charities that once we got involved with them, were hugely helpful. And I think accepting help is important. I just like to say for your listeners, because more of them will know people than actually be going through it themselves. I always used to say when people had difficulties, I say, well, let me know if there's anything I can do to help. And then that would tick my box. I'd offered the help. They hadn't got in touch, so they must be OK. How wrong can you be? You don't want to be asking for help. You don't want to have to ask for help.

You want people to say, I'm bringing you lunch tomorrow. I'm going to go and do your shopping for you, who just do it. They just turn up. We have people who just left a meal at the front door. You still have to eat. So I would would say to people they want to be helpful use your imagination and be practical i had that few times someone just said i bought you a lasagna i've bought you a shepherd's pie because when you're going through it you you don't ring up if you ring up somebody will go yes of course i will but you just don't you're just going through it you just get on with your day. Yeah, I find we never asked for help as such. You don't expect help, but I had a Jehovah's Witness friend of mine and every single week she brought round a chickpea curry for us

and just little gestures like that. Just turn up with the chickpea curry. Yeah, just turn up. Even if they don't eat it, just give it to them. And on Facebook I found a support group called My Kid Has Cancer and they were very, very good, and that's actually how I met one of my closest friends, talking to other people that get it.

The other thing I'd say, some people were afraid if they might say the wrong thing, and it's very hard to say the right thing to somebody in this sort of situation. So my best friends were the ones who could take feedback from me when I would say, actually, that subject or that topic or that conversation, that wasn't helpful, those words. A lot of people I found, they couldn't cope with Ellie's diagnosis. They didn't want to see it or be around it.

Yeah. And you have to understand that. What kind of conversations might you have come back and said that was not appropriate? I think people who make assumptions, I suppose, about how I might be feeling. People say, you must be feeling this or you must be that. Well, how can they possibly know how I must be feeling? People say, you must be feeling this or you must be that. Well, how can they possibly know how I must be feeling?

It's not a must at all. What you really want is a safe space where you can try and work out when Earth has happened to your life and this map that you had has gone. There isn't a new map and you're floundering. And there's somebody who can have a hug and just be with you and just let you talk and say strange things and stupid things and not try and correct you or not try

and fix it the other thing is people always try and fix it always try and make it right and actually it isn't right and it can't be fixed strong was a bugbear of mine i can't imagine i didn't choose it it chose me and i had no choice fight or flight was the aim of the game and i had to be strong it was strong or crumble so like everything now has a pre-cancer post-cancer I can look at a photo and know if it was pre-cancer post-cancer and we actually use it as a timeline but before we were in that world it was unbelievable and you wouldn't imagine you could cope but you can cope with a lot of things if you have to. I was talking to Sam Waters-Long, June Williams and Jenny Grenfell-Shaw

and Anna Regan and Dr Helen Campbell are still with us Helen, you can hear from what those women said how difficult the intensity of treatment is to watch how much has it really improved? So a lot of the improvement I think is as they've also mentioned there's a lot of help in terms of the charities, the Teenage Cancer Trust, the Click Sergeant. I think there's a greater awareness of the difficulties

that the families are going through. So, you know, the child, the young adult, but also the siblings, the parents, the change to their life, the change to the siblings, the schooling, there's jobs, there's jobs there's you know finance and a lot of that has improved in terms of the Macmillan team and all the support around looking after that side of things as well as the actual medical care and then when it comes to the medical care I think a lot of improvements there are in terms of communication with families allow them to their expectations and also in improving

supportive care so things like pain relief side effects you know care for vomiting and and so and overall I think the the experience is is you know still very difficult and there are very difficult times but certainly much improved than than it was many years ago. Anna how often are you trying to help in a case like Sam's where there's a real toll on the parents' relationship? Yeah, absolutely. The families are in a time of crisis when they come to us. And it has a huge toll on all family relationships, whether that's between siblings, between parents who are trying to support the family, grandparents. And there are so many stresses

that come along with this so for example not only are families facing just the terrible fear of their child's health but they also have to think about where like the family spit up where where are they going to stay many families have to travel for about three hours to get to treatment. For example, if you're living down in Penzance and you have to travel to Bristol, or we often support families coming from Norfolk to Bristol or Northern Ireland. These are all coming here for their treatment. You're taken away from all of your support networks. You may have to have one parent looking after the children back home, the other person in hospital has passing ships in the night, kind of going back and forth.

So it's just an incredibly stressful time. So how can you help? I mean, you know, if somebody's job is threatened because they can't get to work, the family's income is threatened, what can you actually do to help them? Yes, so we support with all of the non-medical needs. So just as you said, helping to liaise actually do to help them? Yes, so we support with all of the non-medical needs. So just as you said, helping to liaise with employers to help them understand what a family is going through. Helping people to navigate the financial pressures that they're under,

whether that's looking at what benefits you might be able to apply for or accessing grants. We also provide accommodation near some of the hospitals around the UK. So allowing families to use our Homes from Home service, all of this can help just to support them and to plan the day-to-day practicalities of balancing treatment and life. Helen, how important are your personal relationships with the young patients? Very important.

Each patient, young adult, parent and even siblings, because they often join, each family is very individual and of course we look after children from the age of infants and neonates to teenage and young adults. So you have to sort of adapt to the age and the family and the individual you're looking after. And that can vary. So important is trust and being honest with children and young adults, but also providing the right amount of information and not too much. So how do you allay fears as well as being honest? So I think we're in a fortunate

position that in the majority cure is expected that there are side effects and and things that the child we expect them to go through so we explain we're honest with them what what to expect of their journey and then reassure them that you know the majority of the time although they may feel unwell we're happy we expect good outcome and reassurance but also honesty and communication the focus Anna inevitably is on the sick child how do you help with siblings who are really struggling absolutely this is a really terrifying time for siblings too. Not only are they worrying about their brothers or sisters' health and how effective treatment is going to be, but they also have anxieties.

Maybe when they're at school about what's going on at the hospital, if they know their brother or sister is in having chemotherapy treatment. It also can create a bit of a conflict for children because on the one hand they're really worried about their brother and sister but then they can also feel kind of envious that all of the focus is on that sibling which can create a feeling of guilt. So those emotions are really difficult for children to understand and manage and deal with. On the other hand children can also feel an increased sense of resilience and responsibility that they're you know helping the family at this time so it creates a lot of pressures for siblings. The way that we support children is to

it's through really building relationships and providing siblings with a space to talk to somebody who who understands who gets it they may not be able to kind of say that they're feeling jealous or whatever to their parents but to us they can do that there are also some really other great services out there that help siblings so we can kind of signpost and support um so that they're getting the right support that they need and helen inevitably in some cases the child will die what sort of support can you give to parents and siblings where the person they loved dies I think a lot of that time we have a number of well prior to that it's usually expected we the child's condition deteriorates or we we know that they're no longer curable so very early on families are introduced to a number of different members of the team. So this will include the Macmillan team,

but also there's the Click Sergeants and also the Teenage Cancer Trust. There's often somebody that they can talk to. So we introduce it early so that when the child does pass away, these relationships continue. And in fact, it's often not the doctor as much. We can continue to sort the family it's these these other members of our team who are fantastic in terms of going through the journey with them

and staying with them for as long as it's needed. What impact does it have on you when you lose one of your patient? It's always always difficult obviously it's part of what we do and unfortunately as I say it's not often when it does we all discuss these cases at length to look to see if there was anywhere that we could have improved the journey really rather than the outcome and we sort of focus on what was done well what perhaps we could improve on, and really just to continue to strive towards improving both Outcome and the journey itself. I was talking to Dr. Helen Campbell and Anna Regan. So many emails and tweets from you on the question of mothers whose children have or have had cancer.

Ali said, What amazing mothers on today's programme, so eloquent, dignified and self-controlled. The sharing of the worst moment of one mother's other son's death was one of the least manipulative and most harrowingly moving moments of broadcasting in history. Nicola said, In tears, listening to Woman's Hour and the mothers talking about their children with cancer. Josephine said, sobbing and smiling, in equal

measure, listening to these incredible mothers. Kate said, such a moving and inspirational listen. I feel proud to be a woman and a mother when I hear all the women speaking. Just one smile makes a good day. Beautiful. Catherine emailed, When my child was diagnosed at the age of seven with leukaemia, my way of coping was to get into practical mode and learn as much as I could about the disease and treatment.

But in many respects, I still felt like a rabbit in the headlights until a friend whose child had also had cancer and had done amazingly well came to see us in hospital in the first week and cajoled me into thinking what else we could do. My way of coping became throwing myself into feeding him well. Although he still had had treats I added a huge amount of vegetables and healthy food into his diet juicing every day click Sergeant were also an enormous support he did well and took a great interest in the workings of the body going on to study biochemistry and working in research I went on to study for a degree in nutrition

and have worked with cancer patients since, also writing a book on the subject. What has changed, though, is excessive worrying about my other three children's health and now my grandchildren too. I always think the worst. Leah said my stepson, a keen cyclist, became poorly with an angiosarcoma in 2016. We lost him in 2017 but he managed to see the birth of his twins. We're all still dealing

with losing him. Georgina said my son is just 22 and was diagnosed with testicular cancer in December. He's had a testicle removed and is undergoing intensive chemotherapy right now. There is so much involved when your young person is diagnosed and the journey through. Jane said, listening to you on Woman's Hour with those mothers and marvelling how you're holding it together. My worst memory is having to tell my mother her youngest had died but he was 40, sending them love through the ether. Helen M.B. said brave mothers, excellent advice for all stressful situations, illness and or bereavement, practical help from friends or neighbours is what means a lot. Don't just offer to help, bake something, cook something, turn up and take a pile of ironing.

And Belinda said, having just come through surgery, chemo and radiotherapy for breast cancer myself, the thought of seeing my children go through this is unbearable. Every admiration for those women this morning, their children sound amazing. Now do join me tomorrow when Helen Lewis will be here. She'll be discussing her new book, Difficult Women, A History of Feminism in 11 Fights. She'll be explaining what today's feminists could gain from being a little more generous to those of previous generations.

That's tomorrow, two minutes past ten. See you then. Bye bye. Hi everyone, Russell Cain here. I've got just a few seconds to tell you about Evil Genius, our hit podcast, two and a half million downloads in 2019, top ten, where we take people from history, Gandhi, Margaret Thatcher, John Lennon, and detonate fact bombs around their reputations. It's stuff you don't want to know, but you really do want to know. At the end of a lively debate, my panel of esteemed guests, read, banging, comedians, all have to vote evil or genius. There's no grey area. This is cancel culture

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