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The Cornwall Cancer Cafe podcast with Matthi Clarke.
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No Emma with us this week. We’ve filled the whole half an hour with an edition about Penhaligon’s
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Friends.
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Thanks to the National Lottery Community Fund for supporting this podcast.
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So Penhaligon’s Friends is a child bereavement charity set up after the death of David
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Penhaligon, a Cornish MP who died quite a few years back now, several decades, a very famous man.
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And so this charity helps youngsters, children, cope with say the death of a parent,
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a mother or father or a very close relative or friend who has had cancer or another critical
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illness. So we wanted to find out about this.
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So we’ve been speaking to Penhaligon’s Friends this week and we’ve spoken to Polly Langford
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and Joe Coombs. Polly is the family services lead and Joe Coombs is the family services
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worker there. And they’ve also set up for us to speak to 13 year old Sadie Kelly.
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She lost her dad Tim about 18 months ago. And it is so wonderful to hear how Penhaligon’s Friends
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have helped her. So first of all, let’s have a chat to Polly and Joe.
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I started off by speaking to Polly.
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Charity was set up just over 30 years ago now and since then it’s been growing year on
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year and we support more and more people with their bereavements. But also more recently,
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we’ve supported children when they’ve been anticipating a bereavement,
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such as children who know people who’ve got a serious illness such as cancer.
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Joe, when it comes to dealing with bereavements and loss,
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a lot of us have instances in our lives about that. But
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how is it different from an adult’s perspective to someone a lot younger?
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With four children, because they’re still developing and their brains are developing,
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their thinking around a loss is much more simplistic than it would be for adults.
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So their understanding develops as they go through life. So depending on the age or the
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stage of development of the child will depend on how much they’re able to understand.
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But their thinking is also more, perhaps, black and white in a sense.
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And so they need very concrete terms when we’re talking about illnesses and death and dying,
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which we sometimes find hard as adults because we find it a difficult thing to talk about.
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I know a lot of people will block the emotion. When I went through cancer,
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I told my consultant, I’m putting all my emotions on the shelf.
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I’d learnt how to do that. Children haven’t necessarily learnt how to
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control that element of their emotions. Is that something realistic to say?
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Yeah, absolutely. And we often talk about something called puddle jumping when children
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are bereaved. But we see that when children know someone has a serious illness such as
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and that can be that they take on board the information that’s told to them,
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and then they might respond to that in an emotional way, such as being very tearful or
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very angry. And then within a few minutes or maybe a few hours, they’re wanting to
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carry on with their day to day and off playing. And it’s almost as though they’ve
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forgotten about what’s been told. But then someone will remind them again about that
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information that they were told earlier on or that fact that somebody is ill and that they
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feel sad about that. So they might go back into that puddle and feel that immense sadness or
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anger again. So sometimes for adults looking and seeing what children are responding like,
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it might feel like they’re not really understanding what they’ve been told and
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they’re not processing it the same way as adults. And they might necessarily
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put it to one side and on the shelf, as you say. But yes, we have to be really mindful
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that it may look very different how children respond to us as adults as we feel that we
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do as adults respond to such as illness. And so we’re sitting in a room which
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feels like a very comfortable school room where lots of activities can happen.
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And just tell me about because there’s some pictures painted by people you’ve worked with
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around the walls and there’s things like compost, planting shells, pebbles, card making,
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you know, all sort of friendship bracelet threads, all sorts of things. Tell me what
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goes on in this room. Go on, Jo. We tend to use this room for the family visits that we
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carry out and having the table as well as the sofas means that we can do some craft activities
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with the children when they come in to relax them and welcome them to Penhaligon’s friends.
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So we might end up perhaps making some stress balls which involve balloons and flour and
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rice and things and get nice and messy making those. Or we may do just some perhaps some
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colouring. The beads making we use in family groups sometimes to make bracelets with the
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children and their parents and carers so they have a link to one another when they’re apart
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which is quite a nice thing to do. We also do painting, making pictures and maybe
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memory making through doing a bit of painting or collage using pictures from magazines
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and things like that. I guess for some of the young people that we come across
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they might not have the words to be able to express how they’re feeling
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and by doing some of the activities that Jo’s mentioned it helps them express
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some of those difficult feelings without having to verbalise them with the adults around them
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and then helps kind of their body maybe feel a little bit lighter because sometimes those
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feelings are being kept deep inside and it can make the world feel quite big and scary but
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being able to have the opportunity to express some of those feelings through different outlets
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can be really important for young people. What about the family? How do the families fit
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into helping the young person through? So usually with Penhaligon’s Friends we would
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have a referral for a family when there’s a young person within that family who knows someone
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who has a serious illness such as cancer and usually our first port of call would be to
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contact the family and speak to the parent or carer that may be the parent who has cancer
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themselves or it may be another parent involved and we would talk through what they’re seeing
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the young person, what the young person already knows about the illness, do they know it’s cancer,
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do they know what the prognosis is around, the diagnosis so that we can then help the
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parent think about actually what else would be helpful for the young person to know about
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the illness and how have they been responding and what could be put in place to help that
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young person in terms of support so that might be just giving them some information to
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the young person understand a bit more about the illness and what to expect from that.
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It might be contacting the school that perhaps the young person attends to help the staff
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there understand a bit more about what they might be seeing with the young person.
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We sometimes find that when young people are affected by somebody with a serious illness
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that maybe their attendance is a little bit harder at schools because perhaps they
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worried about the person who’s unwell perhaps if they’re having treatment in hospital
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it might feel unsettling and maybe there’s more separation anxiety experience so
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we can give them guidance around how to manage some of that and also we have some
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postal packs that we can send out to young people which have some tangible items in such
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as we have a couple of pair of hearts at the moment and the young person can keep one of
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the hearts and perhaps give the other heart to the person having treatment in hospital so
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that they can keep a connection while they’re separated which can be quite helpful and it
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also has a booklet in there about what a serious illness is and it helps young people step by
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step think about how they might be feeling when someone they know has a serious illness
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things they can do to perhaps help themselves and also there’s some other
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organizations at the back that they can contact if they want a little bit more guidance
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around what they can do to help themselves so we have lots of information and we have
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lots of guidance to parents and carers and if a young person felt it would be helpful
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to speak to someone outside of their family then we could offer for that young person to
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come in and meet with us at Penhaligan’s Friends just to have a space to have an
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outlet to offload any of those feelings and maybe as we mentioned earlier to do some
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activities that perhaps help them explore some of the feelings that come about when they know
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somebody has a serious illness and it’s a time of change it’s a time that often feels very
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unpredictable and quite scary for young people so to try and help communication between the
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parent and carer and the young person is often kind of a really essential starting point for us
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to try and ascertain what’s already been said to the young person and try and build
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on that conversation and particularly if we kind of work out what age and stage of
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young person is at to think about the language that will be used and how they can kind of build
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on what’s already been said so yeah lots of different areas but essentially just trying to
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build on that communication. So we’re going to meet Sadie in a bit and Sadie’s father
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died with cancer and she went to see him in the hospice. She did yes. And so that is
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quite daunting for anyone isn’t it? Yes absolutely and I think I mean you’ll talk
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to Sadie but I think it can be really important for young people if it’s an option
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to go and see the person that’s in a hospice or in a hospital or at home that’s dying to
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try and help prepare them for what they might see what they might smell what they might hear
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because those types of environment can be very overwhelming for young people and adults as you
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say so to try and give them as much information beforehand if there’s any pictures if they’ve
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never been to the place if there are any pictures of what the building looks like from
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the outside what it might look like in the inside the types of people that they might meet
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and to give them choice as much as possible not to force young people to go and see the person
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in the environment if they really don’t want to but as much as possible if they’ve been given
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information about what to expect then they can have an informed choice about is this what I
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want to do and perhaps have a bit of an opt-out clause so if they go to the hospital or the
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hospice and they get there and then they decide actually I can’t do this but there’s
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another person that still wants to go in that there’s someone that can take them to
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and look after them and for them to know that what that’s what will happen if they do choose it
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that’s not for them at that moment but then I could say often when somebody they know is
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unaware their world is feeling really out of control so to give them elements of control
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and with choices can be really important to help them feel a little bit safer in a world
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quite wobbly visit our website www.cancercafe.org so now let’s meet 13 year old Sadie Kelly
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who was helped by Penhaligon’s friends so my dad was I would say like really happy like a
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lot and he was kind of like more friend than parent if that makes any sense
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so like we’d watch movies we’d like he would kind of just I’d go over to his house on the weekend
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he’d just say what do you want to do and we’d just do it so like would we might pull like an
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all-nighter watching a movie do you know what I mean or like do like a movie marathon like
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what was his favorite type of movie uh marvel movies definitely so like those are my
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favorite movies now because I remember watching them with him and is there any particular
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film you really think of when you think of him probably like back to the future
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yeah like I remember watching that a lot with him uh that’s a classic yeah did you do the
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whole thing where you sat on the sofa with uh nibbles and yeah yeah we’d always go to
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Tesco’s and pick out a bunch of snacks like get a pick-a-mix and some popcorn so in the
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no just just at home yeah and you’d make like the living room like really like
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he had surround sound and like a big tv and loads we had like nine speakers in the living
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room to make it like serious yeah yeah it was serious movie watching yeah and and so that
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that is one of the memories you will always look back on and and and when you say see
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of those films again it must link you back to that yeah it does it kind of I remember watching
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back to the future again and I was just I was just kind of like oh this reminds me of dad
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do you know what I mean you you say dad can you remind me of his name uh Tim Tim we’ve
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got to know his name haven’t we his name so he was very ill as well so just tell me about
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so well my family has a condition called fap which is familial adenoma polyposis
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and so my dad had it and so did his mum and my my nanny died also from cancer because
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it causes it causes like cancer that’s what the condition does so it goes into a polyp
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it grows into an adenoma then it grows into like cancerous stuff and yeah so my whole entire dad
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side of the family like most of the people have it but luckily me and my brother don’t have it so
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it’s it’s so you had it you had to check yeah yeah we had we have to have like a blood
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test and then you weigh and you go up to London like a lot till you have it done but
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thank god that I don’t have it so then my children won’t have it and yeah because that
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that must have been a particular worry at the time oh it was a really big worry because
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at the time of me actually getting my blood test done my dad got diagnosed with cancer again
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so that like my dad if I would were to have polyposis then he would have been so distraught
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like it would have been really bad like knowing that I had polyposis then watching my dad
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eventually die from what the condition that I had once you had the diagnosis for your dad
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yeah how did it come that you got help from Penhaligon’s friends well I didn’t get help
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from Penhaligon’s friends to begin with because I was in it was in primary school
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it was like I didn’t really know what was going on that well so I kind of just
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mummy you were like I think we need I think we need some help to get you through this
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so we we went with like the what’s it called the school nursing system and this lady came in
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like every week or two at my school and just helped with some things that I could do to
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my anxiety because I started getting like a little bit oh there’s no one I can really talk
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to about this none of my friends really get it and I just started getting a bit like
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and a bit anxious about going to school and things like that so that’s when we kind of
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decided that’s maybe we should get something some help of some kind okay and so you
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mentioned you’re at school yeah and how did you find it relating this to your friends or did you
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relate this to your friends well I remember talking to them about it and they were always
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like very sympathetic but none of them really knew what was going on they kind of be like
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oh yeah my second cousin had cancer do you know what I mean like yeah but it’s my dad
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I mean and it was it had quite just like my friends not relating to it was a bit like
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it kind of made me sad because there was nobody else that really knew what I was going through
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personally because everyone’s experience is different so it was just a bit like it was
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just annoying me that none of my friends knew what was going on because like all of them
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came from like quite privileged households in a way where they didn’t like they didn’t really
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have that they didn’t really have that worry like oh my dad has polyposis he might get cancer
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and they didn’t really live with anxiety where I had to and they didn’t really
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get that eventually you you got the support of Penhaligon’s friends is that one of the things
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that they they helped you yourself deal with having someone to talk to about some of this
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absolutely like when my dad started getting very ill and when he had just died I remember
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like I came here and I did some talking and stuff but I don’t think I was particularly ready
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to talk about it then and then about a year later I started getting really bad panic attacks
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I think I was just it wasn’t something that I was aware of until it was like all happening
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I was having like three panic attacks a week and I was just I just held in my emotion for so long
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so I came back here and I got some more help and like it was like amazing and they helped me
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well Fiona helped me like just chat about anything I just ran I just ranted to her all
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the time just chatting chatting chatting just saying like anything that came on my mind where
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I could never really do that with just like I know I could do it with Mummy but like it
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it just doesn’t really make sense when you’re talking about it and do you know what I mean
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so it was nice to just be able to like once a week just lay off the entire week what’s
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happened how I felt things like that and it like really really really helped me I don’t know
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I don’t know what Fiona did but like I’m completely different so what I was then like
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it’s I feel so much better now and we’re sitting in a room where obviously a lot of
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youngsters get help and all sorts of activities do you remember some of the ways they helped you
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well with Fiona I we drew a lot and how so so we would draw like how my week went and
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things that happened during my week and how that made me feel and like little graphs of
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my feelings and things like that and then we would do some like memory work remembering
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things I did with my dad and stuff like that really we didn’t really do any like
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no I guess we did whilst we were talking we’d just do some like painting or
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some bracelet making or stuff like that I mean I found arts therapy very good
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yeah yeah to actually get your feelings out on canvas just sometimes you just need to
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throw the paint and yeah okay so you you spent the last days with your dad in the hospice so tell
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me how the people at the hospice helped you and Tim well the people of the hospice were like
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lovely they’re really really nice and they I remember them taking me into like a little
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to have a chat with me and mummy and just saying like like just making me aware like we don’t know
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how long he’s still gonna have left but but like it’s he’s probably going to pass away soon and
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they were always just really really nice to us just really lovely I suppose when you first
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heard that you were going to go and see him in the hospice what was your initial thought
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well my dad told us that he was going into the hospice he told me that he was going into the
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hospice to get his medication sorted out so I was just I remember thinking oh my god he’s
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going into hospice what does that mean that sounds a bit like hospital that doesn’t sound
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good and I was like oh oh what’s happening in the hospice he was like I’m just going to get
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my medication sorted out but obviously he wasn’t and he just got he just got too well
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to be at home anymore and he just needed someone to take care of him instead of him
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taking care of himself like he always did looking back now on yourself at that point
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what sort of advice would you give yourself during that time because you’ve learned so
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much about yourself and life you you’ve had a huge life experience very early on
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what would you tell yourself to give yourself a bit more support well when I was very deep in
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like anxiety and feeling just like I couldn’t find joy in anything anymore I really thought
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like this is how it’s going to be from now on and I just I didn’t realize that therapy was
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going to help so much with that so I was kind of pushing it back like oh my god I
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really don’t want to go to therapy you know what I mean but subconsciously it really helped and I
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would just say to myself just like it’s not going to be the same forever and I know like
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I remember seeing videos on this and everyone saying it’s not going to be the same forever
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it’s not going to be the same forever but I never really listened to it because when you’re
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in that funk you’re just like it is going to be like this forever but it really it really
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isn’t like I never thought that I would feel the same way like I never thought that I would
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want to go to school and things like that like I just thought I was just going to feel awful
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forever but I don’t and like so where are you now oh I’m I’m like way better now than I was
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like still I have anxiety about things because obviously if you have like a big traumatic
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experience then life is going to be scarier than it is for someone who hasn’t had a big
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traumatic experience really early on in their life so I’ll probably get a bit anxious about
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things that don’t like the usual person wouldn’t really get anxious about but I’m
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so much better than what I was like no more panic attacks I know how to deal with my
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now properly thank you Sadie you won’t have just helped a lot of young people with that advice
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your wisdom there will help an awful lot of adult people as well thank you very much
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okay right so we’ve spoken to Sadie now and it’s a good idea just to summarise some things
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that people should remember and you’ve got some tips for us haven’t you Jo do you want
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for some of those yes particularly when children are younger it’s easier to give perhaps
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little bits of information at a time and then you can build on those as the children grow
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and develop and alongside that always try and be honest and use language that they’re able to
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and that there’s some useful information on the fruit fly web fruit fly collective website
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for parents and carers that that is really helpful in helping with explanations
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and yes okay and other top tips I guess find out what your child already knows about cancer
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and try and build on that depending on your diagnosis and treatment and as Joe sort of
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feel that you have to give them all the information at once because you might not
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know the answers to that yourself but also don’t be afraid to say I don’t know and I can see if
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we can find that out or be honest and say actually I’m hoping that we can find that out
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and as soon as I know then we will kind of keep you in the loop because it helps build
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trust with young people be prepared for questions that you might not have already
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talked about with your child we’ve met and spoken to some parents who’ve been asked questions at
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the supermarket checkout and really difficult questions and we’ve kind of reminded them that
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they don’t need to have the answer at that point but perhaps say to them that’s a really
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good question let me think about that and we’ll talk about that later when we get home and
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then make sure that you do talk about it so it gives you a bit of breathing space to
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about how you can respond because sometimes these questions do throw us and we just need
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a little bit of time to make sure that we get it right and we say that what feels
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helpful for us as well it can be really important to try and keep routines and
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boundaries for young people again we mentioned earlier around kind of the world feels quite
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wobbly and unpredictable so making sure that routines and boundaries are kept in place can
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help kind of keep a security blanket for young people at a time that feels unsettling
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and this can be at schools as well you know when they go into school that’s a familiar
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routine so actually it might be that they want to go into school and keep those familiarities
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going when perhaps things have changed more so at home but to make sure that any education
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setting that the young person is in that they’re aware that you have cancer and that you
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are going through treatment and perhaps prepare them for changes that might be going on at home
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for the young person and also gives them a bit of a warning shot that if they see changes in
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behavior for the young person when they’re in the education setting that it might be a cue
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that something else is happening at home and give them perhaps a space is there a parent
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is there sorry an adult within school who can be that go-to adult for the young person or
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parent if they need to talk about what’s happening at home one of the other things that
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we often hear from young people is that they feel somehow they’re there to blame that the
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person has cancer and that it was something that they did or didn’t do so it can be really
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important for parents and carers and other people who know the young person to remind
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them that it wasn’t their fault there was nothing that they could have done differently
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nothing that they did to do that caused this to happen and also many young people might have a
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misunderstanding about what cancer is and might feel that somehow they can catch it or if they
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did feel that they caused it so it can be really important to hear that they can’t catch
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cancer and again reminding that there was nothing that they did that caused this to happen
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I guess one of the main things is just to try and help that young person know that they
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can talk about it and if they need to have a space to talk about it either with their family
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and if they feel that they need a space outside of their family that there are
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places that they could get that support from either in the education setting or if there
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is a referral to us at Penhaligon’s Friends and there is that option if they need to
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we find that young people often feel best supported by those who already know them
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and that perhaps meeting a new person can feel big and scary so we would always say that at
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Penhaligon’s Friends a referral can be made to us if they have a parent who has a cancer diagnosis
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but our starting point would be from speaking to the family first and then giving them the
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guidance sending them some information that may help support them with some of those tricky
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conversations and then if need be then we could look at meeting them with that with their
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family so I hope that’s helpful. Thank you to Polly and Joe from Penhaligon’s Friends
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and to Sadie for talking to us about her dad Tim. We will be back next week, yes Emma will be with
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us again next week and well I know it’s strange not saying it with her but if you give a hug
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you get a hug so big hugs to you please do tell people so others may benefit about
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this podcast. See you again, take care. Thanks to the National Lottery Community Fund
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for supporting this podcast.