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Here to support you the Cornwall Cancer Cafe podcast with me Matthew and me Emma
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Thanks to the National Lottery Community Fund for supporting this podcast
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So we’ve already had someone we’ve chatted to who has written a book
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And you’ve got a copy of that book. I have got a copy of the book
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I am reading it at the moment because so that was Roland Munger who was
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From the east of Cornwall and he is
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someone who has a family and he
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Had melanoma. He did in his toe. So his books called my big toe is killing me
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And when we chatted to him, we talked about
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Bob Marley that was it brain fog moment brain fog moment because of course Bob Marley also had
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melanoma in his big toe
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But Bob chose not to get treatment whereas Roland did get treatment and we spoke to him
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All few months ago didn’t we and just to point out your diagnosis as melanoma as well. Oh, yeah, I missed that but yes
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Yeah, I was diagnosed with melanoma mine started on my head
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So I’ve stage two and then it moved into my lymph nodes in my neck. So stage three I had
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surgery on both and a year of
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Immunotherapy
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so this week we have
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Someone who has also written a book and was also
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diagnosed with melanoma
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His name is Kevin Donahey. Now. He isn’t from Cornwall, but I thought it’s very good because
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He’s from Scotland a long way away another Celtic country, but a long way away
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but his book is
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Out there and has stories from people all over the country
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I’m just starting to think that people who’ve had a diagnosis of melanoma need to write a book. What about yourself?
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I don’t think that that’s the case at all because they the thought of writing a book is is very low on my
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list of things to do
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Good distraction. I have other distractions. Yes, you do have my music
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Okay, so
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this book has got a whole lot of stories in it from people who’ve had a diagnosis of a
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diagnosis of cancer and
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it’s called
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stories of cancer and hope and you can find it online and it’s on sale and
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raise money for Maggie’s cancer centers, which
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Around Britain not in Cornwall, but other parts of Britain. So now let’s go over to
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Kevin who started by telling me where the books inspiration comes from the inspiration for the book came from my own personal
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diagnosis of stage 4 metastatic melanoma in December 2019
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Once I go over the shock I felt quite isolated and alone and I was looking for hope
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As to what the future might bring for my family and I and on my journey which included being treated during
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Lockdown in COVID times when I was staring out the window. Not really knowing if I would ever see the outside world again. I
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Realized that in order to help my mental health I needed to connect with people who are perhaps on a similar journey
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so through online forums
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I found a mental health group and a melanoma group and I just found it incredibly powerful not only sharing my story and
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In a safe space but hearing other people’s stories as well and that gave me hope
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So I just thought it would be a great idea to try and collect some stories of cancer and hope
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Across as many different types of cancer as well to try and help other people on a similar journey
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Not to feel alone
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Just tell me about this feeling of being alone and
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I’m because you say you’ve got a family with you
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And in what day in what sort of way did this manifest itself this feeling? Yeah, it’s it’s quite strange
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But you know
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When you go through a cancer journey and as I found it later on, you know
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It’s it’s a lived experience which if you’ve been through that that lived experience you can relate to it
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Whereas my family who you know were supporting me, they didn’t have cancer
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So it’s incredibly difficult and quite fractious at times during covert as well when we’re all locked in that
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Whilst they wanted to support me
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They didn’t know how I felt and it was only through finding other people who knew how I I felt
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That I was able to perhaps make a connection
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and did you
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have a challenge
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Communicating your feelings and what you were going through to your family and friends
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Um, yes, I did. Um that yeah, there was a number of very interesting conversations, you know, as I said
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There was the the initial covid lockdown. I was on treatment. I was then put on the shielding list
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And I was convinced that you know, covert wasn’t going to kill me. It was more likely going to be the cancer
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That would kill me but my family wanted to try and protect me from covert as well. So yeah, there were some very
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fraught moments
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During that when I just I felt that perhaps they they didn’t fully understand
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My my fears rational or irrational as they were that’s you know
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I was looking at an incredibly short period of time and I needed to do things in that in that time period
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So
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Writing this book is a sort of therapy, isn’t it?
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It certainly is for me and the other people and there are 39 stories including my own
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which cover a wide range of different types of cancer and people from
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um all over the uk have contributed and I felt incredibly privileged that people could share their stories with me and
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Because i’d been through a similar journey to them
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There was an element of trust that was built up immediately and I certainly felt better for for
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Helping someone to tell their story. Um, and it was certainly challenging as well
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Um, it is quite intense. Um some of the emotions that people shared with me and being the custodian of their emotions
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But looking back everybody who who shared the story and were happy
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That uh that their their stories are out there hopefully helping other people
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It just gives me an idea without going into specifics at the moment because in future podcasts
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I would like to maybe return to the book and um cover some of these
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journeys in more detail, but what would give me an idea of um, some of the different types of
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Cancer experience that you have found out about in the book
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Yeah, certainly. Well, I think through
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If I think about the different types there’s about 13 different types of cancer that they’re covered
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Um, I obviously had a very good support of melanoma community. So there’s quite a few stories about melanoma
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different stages different outcomes and
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When I set out to to create the book I I had I had to make sure that
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Not every story had a happy ending because that’s the unfortunate reality of cancers
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Not all of them do and there were people who have shared the story with me
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Who at the time had terminal cancer?
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And they knew they had a short period of time
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So it was I was very privileged. Um to be able to to tell their story
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and
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There are people of all different ages, you know from 18 up to
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75 years old who have been up who have had different journeys different experiences
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But the thing that comes across are perhaps some common themes within the book as you just mentioned
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not everyone’s
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Cancer experience comes out in a good way
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And not everyone wins in a bodily way
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But I find from the people i’ve spoken to
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Mentally a lot of them do find a way of winning still
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They do and the central theme to to the book, you know being called stories of cancer and hope is
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What means different things to different people as well?
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And you know
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The analogy of trying uses
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You know you perhaps, you know, you hope that something isn’t seriously wrong with you
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You hope it’s not cancer. You’re told it’s cancer. You hope it can be cured
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If it’s incurable, you hope you can live
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At a reasonable amount of time and achieve things and even for people, you know in late stage cancer
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Who know they have a short period of time
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There are still hope but it changes
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They perhaps hope that they can have a pain free
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End of life. They hope that their family will be okay without them. So
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Hope is constant, but it does
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change
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Through your journey as well
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and
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What have you learned about yourself in putting this book together and through your own journey?
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Um
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I’ve learned that um
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I couldn’t do this alone
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From
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My cancer journey, I had fantastic support from friends and family
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um, but in pulling the book together because um initially
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The idea was to give it away free of charge cancer charities and cancer treatment centers. It initially wasn’t wasn’t for sale
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Um, I had 38 people willing to give their story
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I had 17 friends and family that were willing to give their time to help to edit it
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Our daughter did the design on the cover and an illustration and i’ve had 14 companies that have sponsored it as well
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Because they believed in the project. So the the thing i’ve learned is you know
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Through pulling this book together. I couldn’t do it on my own and that relates very much to my cancer journey as well
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I couldn’t do it on my own
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And even though I tried to begin with I soon realized that
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You need help and there’s nothing wrong with asking for help with you
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and
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What sort of response did you get when you asked for help?
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That’s a very good question. Um
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perhaps
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Mixed people wanted to help but not everyone knew how to help
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Um, you get i’ve got a great
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Community business community
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And where people, you know would contact you and reach out and you know, try and give you encouragement
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Um, but you find there’s a small number of people that actually come to you and offer help and that help could just be
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Having a chat or going for a walk or meeting in the pub
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You know, it could be just the small things that people are willing to do for you without being asked
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Um, I found that incredibly helpful
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Because a lot of people will come into this
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fairly independent people and very frightened to
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Ask for help and they feel that by asking help they are admitting defeat
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Yeah, and perhaps, you know not being a psychologist. I’m not sure if perhaps men are less likely to ask for help compared to
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Compared to women
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Um, you know as you know the the head of the family, uh, you know kids teenage kids, you know
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It’s my responsibility and I perhaps carried more of a burden than I should have
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And I sometimes felt that I was a carrier of hope for my family
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And friends, you know the initial reaction to someone actually how you’re doing. Well, i’m fine and and you might not be fine
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But that that’s the initial response that that you give to people
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And you were just talking about dealing with that response when people ask you how you doing
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uh, how did you cope with the
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Using an olympic sort of thing here the acrobatics that your brain was doing against you during the whole journey
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Um, yes, um, it’s you know, you can have you know
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Someone on your shoulder telling you all the encouraging things and telling you to be positive and yet on the other shoulder you got
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Someone telling telling you perhaps the negative things
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um, it took me a while, but I
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I had to confide in in my wife and a couple of very good friends exactly how I was feeling
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Um, and also through the support group groups that I found that they were definitely a safe space
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And finding out finding these people I could perhaps tell them things that I
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I wasn’t comfortable sharing with people who were very close to me because they understood they were walking a similar path
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And that’s where certainly charities and cancer support groups can come in incredibly useful
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They are a very very safe space and they’re used to helping people on a cancer journey
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Uh, and you’re speaking as someone who has left treatment behind them and um, you know, you you are
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Uh without any appointments like, you know, obviously there’s probably checkups aren’t there every now and again
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um, but
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um
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Is it any easier?
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mentally
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Afterwards or do you still have you know challenges?
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It it takes time and
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anyone um
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Going through a cancer journey. You soon realize what’s anxiety is
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Um that time between having your cancer scan then getting the results that can be a torturous time for me
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Personally every twinge every ache I convinced myself that the cancer was either growing or it’d come back
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um, and over time
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Um, it does get a bit easier, but cancer is always with you
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That’s what I find with my cancer. It’s under control, but it got into my bloodstream
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I’ll always be stage four cancer and even talking to people who shared their stories
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Years later, you know, it’s it’s still up here
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You know, it’s it’s nestled away somewhere in in the back of their mind of their mind that you know cancer is just
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It’s always with you
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So how’s it changed you?
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Um
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I I have a slightly different perspective on life
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Things that perhaps used to bother me and annoy me the small things in life. I just really don’t
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They’re inconsequential
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And i’ve changed my my life. I used to work five days a week. I now work part time
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um and spend time with friends and family
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um doing more hill walking and traveling and
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And enjoying this chance that i’ve been given through the the wonders of uh
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of uh cancer um cancer research and the amazing nhx
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Okay, so
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How would you let let’s get you to give me some tips
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for people who maybe have just
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been diagnosed
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And have this all ahead of them
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What sort of things would you say to them at this stage that you actually you wish someone had said to you
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Yeah, number one. Don’t do it on your own
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Do not try and do this on your own. You’ll have your oncology team
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Um who who are you know who are there to take you through the the treatment the side effects everything?
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um, so
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For me, I had to put full faith in my oncology team, which i’m glad that I did
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but
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Don’t try and carry it for everyone else in the family
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It’s such a traumatic experience
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so have people that you can confide in and
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Try and find people
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I I call them, you know my cancer tribe and a lot of other people do
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Try and find people who perhaps are walking a similar journey or have walked a similar journey as well
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Um because it’s a lived experience and they’ll get it they’ll understand and that can be a very safe
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Space those are the two main things that i’d recommend
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So that is right find a support group for your type of cancer
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Well, either for your type of cancer or just for the fact you’ve got you’ve got a cancer
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I mean with our book all the royalties go to maggie’s they’ve got 24 cancer centers throughout the uk
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You may not have one in your doorstep, but maggie’s is a place that you can just walk through the door
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You don’t need an appointment. You don’t need to be referred and they deal with all different aspects of
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Whether you have cancer someone you love has cancer or even if you’ve got a friend that’s got cancer
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They’re there to support you because actually that’s a good point
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Uh, we’re talking about the person who has been diagnosed here
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But there’s also the carers who and the family and friends who are really going through it, too
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They don’t have to talk to you sometimes do they?
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You’re right and you know, I talk about people affected by cancer
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So
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I have cancer but my wife my my friends my family
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They’re affected by my cancer and when I speak to people, you know
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Everybody at some point in their time has or will be affected by cancer whether it’s directly or indirectly and they need support as well
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And so you you’ve had the support do you still have support now?
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Absolutely, I still have very good friends
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Um some I knew before I wrote the book some who i’ve met through writing the book and
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Even more people as well that you know that we can just chat to each other
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Not necessarily always about cancer. Um, but i’ve met some amazing people some very good friends
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and yeah that that support
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Community is there and I like to think that
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I through this book and everyone else’s stories that we are supporting other people affected by cancer as well
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At least it gets the topic of the weather and football doesn’t it
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It certainly does it it does but you you don’t want to be talking about 100 percent of the time
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Sometimes you need need that chat about where you’re going on your holidays or uh, did you see that netflix series?
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You know, we need a bit of normality as well in our lives, don’t we?
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Because actually that’s a really good point about maintaining a level of normality
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It it is yes, I mean it’s
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When when people ask you how you how you’re doing
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um
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And that’s an uncomfortable question as well for people to ask you
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Um, yes, you can talk about your cancer
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But you know feel free to talk about other topics and for any of your friends and family
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Just you know, feel free to have a normal conversation. Not every conversation needs to be about cancer
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That that is a difficult one, isn’t it? Because everyone wants to ask you wants to know
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And sometimes you just get tired of telling people don’t you you do and not putting on that brave smiley face
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And and there are even times when you know
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Perhaps people feel compelled to ask you and that that they really don’t want to know
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But it’s just the thing that they that they end up asking you
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Here to support you the call more cancer cafe podcast
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visit our website
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www.cancercafe.org
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So that was kevin donahey, uh, and he had a melanoma
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diagnosis and
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He afterwards wanted to give back as he was saying by writing a book
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The book was about hope and he says hope means different things to different people. What did you make of that? Emma?
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Um, yeah, it’s
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It’s a very uh true statement to make isn’t it?
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Hope can be I hope I see tomorrow or hope can be about what’s my future going to look like so
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um
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Sorry that went from very dark to very light, didn’t it? But but it but it it’s true because uh
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He also said that hope is a constant but it does change through your journey. So
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He was saying that
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You know when you’re first diagnosed
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You hope that uh, there is a cure then there might also be a situation
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Where you’re told that it’s not curable, but uh, it is manageable
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you might be at a situation where
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You are told that
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Uh, it is not manageable and there is a time limit to how long they can look after you for
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And then you start hoping for other things such as hoping that you don’t go through too much pain
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or you don’t go through any pain or
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There’s also hope for other people such as family and friends
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Yeah, um and hoping that um your family and friends can
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Go through the journey with you support you. Um
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This is at any stage of cancer if it is a terminal diagnosis
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then
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What will the future look like for my family?
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You might have children
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Um, you you might have a partner
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What will it look like have I got my will in place and you hope that you can get that all sorted in time
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some people i’ve actually spoken to
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have
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actually found a lot of
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light
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in that part of their
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Experience in putting their affairs in order in that they are thinking about other people at that point
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Yeah, I have actually had that line said to me
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um, and I I felt
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Awful receiving it but I felt awful for the person that said it to me as well
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um, and my immediate reaction was
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Are you sure it could it just be could it just be and?
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In my case it wasn’t terminal it was in the lymph nodes in my neck and my question was could it just be in my neck
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So after a couple of scans and and yeah, it was just in my neck
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So my prognosis changed which was fantastic for me
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So the hope was there for me that that was going to be the case and then what did your hope change?
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Through your journey. I think finding out that there was
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Treatment available
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I hoped that it would be offered to me and it was
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and I was
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very very grateful that it was offered to me because they the the consultants could have
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Decided that actually they would just watch and wait
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Rather than offering a treatment. So I suppose that’s that’s hope as well, isn’t it?
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Hope that you’re going to be offered the treatment that you’ve read about seen about
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um
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And and hope that they’re not going to say actually it’s not suitable for you. So it’s another hope isn’t it?
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and for me
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hope
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with non-hodgkin’s lymphoma, which
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Is well known as one that relapses. It’s a
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Different time so i’ve known people who have gone through decades with no relapse
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And i’ve known myself
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Who had three or two relapses in?
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three years
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And you’re now hoping that you’re not going to have another relapse ever again exactly
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I’m hoping that the treatments the last treatment I had put me in a very durable remission
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Which will see me right through
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Yeah, but but then there’s the emotional and psychological damage that have been done that you now have to hope that you can
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Not fix but move forwards with
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it is and
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I am doing all sorts. I mean this this podcast is part of that
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Hope in that I want to
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Give myself hope I want to give other people hope as well
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But i’m also on the receiving end of a lot of hope i’m i’m just you know, i’m going on a
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What I call an abduction to a cult that my mother keeps talking about it. I’m going on a retreat
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for people who
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have
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been through cancer in recovery and
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That is people who’ve paid out money to a charity to help people like me to give me hope
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That is really that is you know, that is a wonderful thing
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It is i’ve got a friend who’s actually done this and that friend said that it was a life-changing experience
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So it’ll be interesting to see what you what you come back with
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What who I come back as you come back as you might come back as batman
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Spider-man
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Oh, you’ve got to make light of some situations don’t you well
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I mean that that’s a lot of people find hope through all sorts of
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methods and situations
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And this is what this book is about. Yeah, and actually the cove run a course called hope
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it’s not
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Hope is an acronym for they keep telling me what it is
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And I keep forgetting because i’ve got brain fog and don’t but it’s hope course the hope course
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I call it the cope horse. No, it’s the hope course
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And it’s it’s about finding the good in things. It’s about looking forward giving yourself some challenges. So
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Um, you know the cove offer that i’m sure there’s there’s other things around
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So yeah, hope is a very strong word, isn’t it?
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I had to have a catheter which I called clarence clear water
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You sit and think how am I going to cope share this podcast on your social media so others may benefit
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anyway, that’s
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Been looking at this book
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So I I could go through this book and tell you the isbn number
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But I don’t really think that works on in a podcast or on radio
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But if you just look for stories of cancer and hope
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It’s a collection of stories from people affected by cancer
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Each story is a lived experience about the impact of the disease by sharing the stories
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The kevin donohue who wrote it wants to help people affected by cancer to feel that they are not alone
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Hope is constant so you can find that it it’s about 12 pound 99
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It says for the recommended retail price
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You can I think you can find it on
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amazon, but
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It’s also for sale
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In raising money for maggie’s cancer centers across other parts of britain
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worthwhile
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and so
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I’m sure that so there are stories we can cover. In fact, i’ve got one of them tony collier
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Be em is one of the people who is an upcoming
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interview on this podcast who we
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Got from kevin who wrote this book. So that’s one of the stories you can find
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That’s a tony collier be em from the stories of cancer and hope
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Can I just ask what does be em stand for?
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british empire medal
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Thank you. I think so. Well, I thought if I don’t know there’s going to be others that don’t know
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Bertie edwards medal. Oh, well if it is the british empire medal, it’d be lovely to hear
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How he got it. Is that what this story is going to be about? I’m not sure it’s about how he got the medal
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Um, well, I don’t know
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Have you got any gongs gongs? No
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Why are you laughing
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Our music therapy session that we had this week and we were talking about um
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There’s you can sort of do this yoga where they use gongs and things in the room and it’s about
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Um, some people can stand it and other people’s can’t stand it because it’s it’s not just the sound
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It’s the vibration. Yeah. Yeah a sound bath. That’s it. Yeah, and that’s why we’re thinking of gongs
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Okay, I don’t know where you went okay, well that’ll come up in the bloopers
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I’m sure we yes the bloopers may be in the christmas edition. I have a christmas edition planned
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So thank you very much. We got to give everyone a hug
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Yeah, because big hugs from us because when you give a hug you get a hug
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See you next week. Bye. Bye
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Thanks to the national lottery community fund for supporting this podcast