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Amy Wilson, Macmillan Information & Support Manager hosts our cancer stories podcast, interviewing people who have had a cancer experience. The cancer stories podcast series aims to bring you local stories from local people in the Northern Trust, sharing anecdotes from diagnosis and treatment, to telling family and loved ones.
Provided by the Northern Health and Social Care Trust in Northern Ireland, generously supported by funding from NHS Charities Together (https://nhscharitiestogether.co.uk/).
Feedback and suggestions would be very welcome via our short online survey, https://forms.office.com/e/i8ZGK9JPyF
cancer stories live ep1
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Hello everyone and welcome to the fourth episode of the Cancer Stories podcast with the Northern Trust, local stories from local people. My name is Amy Wilson and I'm the Macmillan Information and Support Manager here in the Northern Trust and we're doing something a little different today. We're going to share a recording from a live event we had in June of 2023.
It was a skin cancer health and well being event in the Ross Park Hotel. And during the event, we hear from Gavin, who shares his journey with skin cancer. His cancer nurse specialist, Michelle Reid, asks some questions about his experience. And we wanted to share this with you today. So I just want to welcome up on stage Michelle our cancer specialist and Gavin, our patient representative.
And they're going to do kind of an interview style sort of chat about Gavin's story with melanoma. So again, Gavin, thank you so much for being here today and off you go. Thank you. It's good you're a man that can carry up the chairs. This is Gavin, and I'd like to thank him for sharing his personal journey.
Whenever I approached him to do this, he didn't hesitate when asked because he wanted to help others. So, a brief synopsis is Gavin was diagnosed in December 2019 with a melanoma on his ear at the age of 24. He was clinical stage 2A and he continues under 5 year follow up. So Gavin, can I go right back to the start of your patient journey?
And what made you go to your GP? So, hello everyone. I'm Gavin. So back in May 2019, I started to notice that I had a spot growing in my ear. Like everybody in this room, probably if they have a spot or pimple or mole, they poke and prod at it. And I was no different. I was poking away at this spot and couldn't get it popped.
So with no joy, I just pretended that it wasn't there and hoped that it would soon go away. So that was May. So in July time, I went on holidays to Croatia. And really in Croatia, I noticed that the spot was getting bigger and a lot redder. So, I said to myself, when I come home from holidays, I will go to the GP to take a look at this.
Now, I wasn't the type of guy that would have went to the GP. I was actually a bit nervous about going to the GP, because I didn't want to be told that the spot was in any way dangerous. And I was blessed with my health, I hadn't really been to the GP that often before. So, yeah, I went to the GP in, I think it was the start of August.
And the GP, She told me that the spot didn't look dangerous, which was a relief to me. She tried pop the spot herself, but no joy. So she gave me an antiseptic cream to apply to it to help reduce the swelling of it. So I left thinking, right, well, at least it's not a dangerous spot. So I was applying this cream for the guts of a month and I didn't see any difference in it, so I thought, you know what, I might go back and ask, can this GP pop this spot once and for all.
So this time I got a different GP, and this second GP told me again that this spot didn't look dangerous, so that was a relief. And she tried pop this spot with a sterilized needle. Thinking back on it wasn't the best idea. So so yeah, no joy either. So she referred me to the Ulster hospital in Antrim that when leaving the GP that time, they sort of described it like it was more of a cyst that needed to be lanced rather than a melanoma.
So I remember leaving. The GP practice thinking, right, finally, I'm just going to get rid of this spot once and for all. So yeah, it was in no way feeling nervous. So I was that not nervous. I went on another holiday, believe it or not. I went to I went to Lisbon. And when I think back on my time, of having melanoma.
I think of a picture of me and my girlfriend at the time. It was sort of a selfie, but I remember as clear as day seeing this spot on my ear, and to me it looked like I had two heads. The spot looked that big at that stage. So I was really determined to go to Ulster Hospital, or sorry, Antrim Hospital, and and get the spot removed once and for all.
So, I was in Antrim on the 5th of November, 2019, and I remember being brought into the, the surgery room. And there was a student nurse and she was taking all of my information. My name, my date of birth, my address, all relevant details. And it always stuck with me. She asked me a question Is there any family history of skin cancer?
So that was the first time that I'd heard the C word so I quickly said, no, no, no, no, no, no, no. So she was a bit taken a back herself. So she moved on with her questions. That was fine. So it was that day I actually met Dr. Skillen for the first time. So she entered the room and she explained that they would carry out this excision, isn't it?
Yeah. And she said she can do it in two ways. She can do it. Well, probably to explain it to me, like a horizontal lance, or vertically, she described it like removing an apple core. So I asked her what would be the most effective method, and she said probably the apple core, so I said we'll go for it.
So surgery went well left fine, left happy but I remember the, where the spot was, it looked like somebody had sort of put out a cigarette on it. It just looked like this black circular hole but ultimately the spot was gone, so I was happy enough. So, back to work, and moved on with my life, and I actually go home to the home house on my lunch break, and my father was there, and he said that White Abbey Hospital had left me a message, and that they would like to call me back to discuss a recent procedure that happened at Antrim Hospital.
So at the time, I thought, okay, that's a bit strange, but I just went with the flow and thought maybe they just want to check if the ear's healing okay. So so that was fine. So I went to White Abbey Hospital on the 4th of December, nearly a full month after the procedure in Antrim. So I can nearly tell you the exact seat I was sitting in at White Abbey Hospital that day, and what I was wearing.
But yeah, I was, I was really nervous. It hit my stomach when I got there. I just had a vibe something wasn't right. Probably my body telling me to, to be honest, thinking back on it. But that was the first time that I met Michelle, because Michelle was the one to call me into the private room. So I got called into the private room, and Dr. Skillen was there waiting on me too, who carried out the procedure on Antrim, a month prior. So Dr. Skillen went on to tell me in the private room that, that they'd tested the spot that they'd removed from a urinantrum. And that the results of those tests was that it was actually a melanoma that they'd removed.
So yeah, that, that, I asked what a melanoma was for that was, wasn't a word I'd ever heard before. So Dr. Skillen said that melanoma was a type of skin cancer. So, I think it was just hearing that scary cancer word. The only way to describe it was, sort of like a film. Dr. Skillen continued to talk and explain what melanoma was.
But her voice was fading in and out, and my head, I sort of felt faint, it was like a, you know, a train going underneath a tunnel, you know, just wipes you, and started to sway a bit too, so. I just remember saying to Dr. Skillen, interrupting her mid speak and saying, Sorry, this can't be happening. And fight or flight instincts kicked in and I just headed straight out the door.
I just didn't want to be there. So Bit dramatic, Michelle, now that I think about it. Michelle Michelle chased me up the corridor, but at that stage, it was like I was there by myself. And Michelle was asking me to return to the room, and a million questions going through my head. And I remember just turning around and saying, I need to ask more questions.
And we went back into the room. Dr. Skillen was still sitting there. And I must have asked her maybe 10 questions in the space of 10 seconds. She hadn't had a chance to break breath to me again, and I was out the door again. And, so dramatic. But this time I actually made it to the, the car park and Michelle and Dr. Skillen this time followed me out the door. And I think the fresh air may have helped me calm me down a bit. But I had, again, maybe 2 million questions at this stage. And Dr. Skillen said, please come back into the room, you know, and I'll answer all of them for you. So back into the room for a third time.
And I might've sat there maybe for maybe about like an hour and a half. And they were very good with me. They calmed me right down and answered all of my questions. And. Sort of a side note, at that time I had a young cousin, she was about maybe 5 years old at the time. She had recently been diagnosed with a rare sarcoma cancer on her foot.
And our family were, you know, taking a serious beating with this news. And I just didn't want to be the one adding to it. Right, I'm getting emotional thinking about it. Okay, you're doing very well. So, that was fine, so they explained it and calmed me down. Yeah, got back in the car, no, no music, no radio on, eh, sun was setting, just coming to terms with this news that I now had cancer too.
So I think it was a day or two later, Michelle, you invite us up to Ballymena, eh, the clinic and you know, you hardly get a chance to get a word in that day, in Whiteabbey, I was speaking that much. So that's when I really got to know Michelle, again, a day or two to think about it, come with a lot more questions.
So. Of course. Michelle was able to answer each and every one of them. So, yeah Michelle clearly explained that there was a plan in place here. That, you know, step by step there would be a PET scan and the purpose of that was just to check if the melanoma was contained in the ear or if it spread anywhere else.
Followed by that there would be a few pre op procedures, one in Ulster Hospital. And then following that there would have been the main operation in Bristol. That's right. So. Yeah, Michelle is. Can I sort of explain initially at the start of the sentinel lymph node biopsy coming in to Northern Ireland Patients had to either go to Dublin or Bristol to have it done So Gavin was one of the first to travel over to Bristol for this procedure Yeah, so Michelle explained that she had previously been to Bristol with another patient and had met the surgeon that would be carrying out my operation Dr.
Orlando. That's right. So yeah, Michelle explained that Dr. Orlando was the best in the business, a melanoma guru, and yeah, that just always left me feeling that I was in top hands. So I was sort of leaving that clinic that day that I, I would sort of describe myself as a person that likes to be in control of situations.
Unfortunately, this would be a situation that I would have to put 100 percent trust and faith into Michelle and her team, and that's a decision I don't regret, so thanks very much again. So, following that, it was a, well, I have here that I went to Blackrock in Dublin on the 20th of December, so that would have been maybe two, three weeks after our information session, so.
During those two and three weeks, that's probably when the mind does it's most overthinking. And you start to think about all that poking and prodding and squeezing of the spot early in May, and all those GP attempts at squeezing the spot too, and you're just hoping and praying that the, the cancer hadn't spread or it hadn't aggravated it in any way, shape, or form, so.
Again, I'd like to be in control and not knowing that three week wait to get the results from Dublin was a bit of a torture, but, you know, I continued to work throughout all that too, you know so that helped because if I'd have took time off work, I'd have just spent day and night overthinking so nine to five was sort of a period I could have clocked off and just focused on work and then you have the help and support of your friends and family to say, listen, don't be worrying and leave it to Michelle and her team and everything will be fine, so.
So yeah, I even remember, like, my knuckles and both hands broke into, like, a white rash at the time, and no doubt that was down to stress related, too, so overthinking's a, the mind's a powerful thing, is that the phrase? So overthinking definitely can run away with you, but... We, we made it to Blackrock in, in Dublin.
I went into the, I don't know what the name of the machine is. The only time I'd seen it would have been in TV's or movies. The CT scanner. So I might have been scanning that machine for about, about like 20 minutes, half an hour. And all you could do was just lie and close your eyes and pray that all went well.
So once you come out of that machine Blackrock give you a CD and I thought hopefully they could tell me the results in there But they said it had to be read by Ulster Hospital who I was to see three days later for a pre op procedure So again that three day wait to find out of those results was a bit torturous too.
So Again, you can only hope and pray. So yeah, that was on the 20th of December, and on the 23rd of December, I went to Ulster Hospital and met Dr. McAllister. So Dr. McAllister explained what the pre op procedure would entail, and explained about the Bristol operation too, so she helped calm me down for that as well, and I handed her the CD, and hopefully get those results that evening.
So, operation in Ulster went fine, and After I came out of the operating theatre, she was able to tell me that the melanoma was solely contained in the ear and it hadn't spread, so that was a bit of good news. She hit on 23rd of December, so was able to enjoy the Christmas holidays after that.
Bit of news, so, all that was ahead of me after that was the, the Bristol operation. So, Bristol was on, I flew to Bristol on the 16th of January 2020. And the operation was on the 17th. So, I have to say, the Ulster Hospital took care of absolutely everything. Covered the parking. They paid for the flights.
They paid for the taxis when we got to Bristol. So yeah, I put mom up in a premier inn in which is about five minutes. Up a steep hill. Up a steep hill. Very hilly Bristol, if you've never been. So yeah, it was five minutes away from the private hospital that I was in. And the only way to describe the private hospital I was in was like a five star hotel.
I think it was Called Nuffield. That's right, Nuffield, Nuffield, yeah. So yeah, the staff were very welcoming and friendly and it was spotless and met all the doctors, nurses, and ethicists. Dr. Orlando met them all. So, yeah, they put everything at ease. There's no questions left unanswered, so. It was really good there, so spent the night there on the 16th and early morning on the 17th, I had to get a taxi to another hospital in Bristol for another pre op operation.
Again, this was all covered by the Ulster Hospital, the taxis, so it's all effortless. So got that pre op operation over me the very best and got a taxi back to the Nuffield Hospital. So went back to the, the room and, again, met the anaesthetist and Dr. Orlando and Both were able to tell me how long I'll be unconscious for, where I'll feel sore afterwards when I wake up again, and where exactly is it the skin graft that he carried out?
Where the scar would be? Yeah. Everything went really well. I was very happy with his answers. I remember asking him maybe a silly question, does he do many ears? I think the mans probably done a hundred, a hundred million. So yeah, I had all these silly questions for him and he's happy to answer them all for me.
So yeah, so I was walked down to the operating theatre by the staff, knocked out and woke up to the staff, told that the operation was a success. Dr. Orlando met me afterwards as well and he said he was happy with the operation. Said that I need to get the stitches out maybe two weeks later at Ulster Hospital, and I had that central lymph node, isn't it?
Central lymph node, yeah, yeah. Where they'd put the dye in to get the main lymph node. So I was told that Dr. Orlando had removed that central lymph node to test it to see if any of the melanoma had spread into any of the lymph nodes and that those would be tested in Bristol and the results would be reported back to to the Ulster Hospital.
So leaving Bristol, that was one of the last worries on my list, just to see that these results came back. Did you worry about having a scar in such a, an, an obvious area, you know, in your face? Not really, Michelle, to be honest. Maybe as rough as it sounds, you know, I was, when I had the melanoma, you know, if somebody had said, listen Gavin, you have to lose this ear, you know, I was completely willing to do that, like I just wanted the spot off me, ASAP, but even whenever I realized that I would have scars.
From my ear down to my neck and I have a skin graft here, I have a scar here too. It, it wasn't really something that I was overly worried about to be honest. Now, as could be other people here in this room, that that would be their worst nightmare. But you know, at that day in Ballymena, you know, I met Kerry, who's part of the Young People with Cancer Service.
Yes, that's right. You know, all that was explained to me, all these services, you know, the skin therapy and you know, but even the time it was explained to me, it never really clicked that, that was something that I would really avail of. But it's definitely a good service that the NHS definitely offers.
She came back from Bristol. Yeah came back from Bristol and went to the Ulster Hospital on the 24th of January. So the doctors and nurses removed the bandage and removed, it was like sort of a sponge that was attached to me or due to the dye test central lymph node. So that was all removed and everybody was very complimentary to the surgery and said that it was done very well and the skin was attached to the ear very well.
It's all was healing properly, so they're very happy and then on the 6th of February, Michelle, you gave me a phone call to say that the lymph node test results were back and that they're all clear. So that was maybe the best phone call I've ever got in my life. But after that you went on to explain that I'd be part of your care for the next five years.
And I'd be meeting you once every three months for three years. Is that right? Yes. And once every six months for two years. Yes. Yeah. He's listened well. So, and can I say he travels to White Abbey? Every time from Cookstown because he won't go anywhere else. I won't sit in the same chair though the first time I went.
I avoid that . Yeah, no, I'll go anywhere in Ireland to meet Michelle now to be honest. She's helped me too much to count there. So definitely forever in your debt there. But yeah, no, so you explained what's ahead of me there. And that'll be part of your team. You explained how to check your lymph nodes, when to check your lymph nodes, how to check your body for spots and moles.
Temples, whatever it is. And yes, it's something that I've done ever since. Obviously the importance of applying sun cream moving on. You know, this is all that, not just me, but my family and fiancé now too. You telling me and I telling them, just spreads it down. That's right. But, you know as I say, I put 100 percent faith in Michelle and her team there.
And thank, thankfully, right out the right end of it. And what happened there recently, just before Christmas, if you don't mind? So, I was in bed one night and I could, anytime I was swallowing, sore throat so, I knew that there was something not right, and next thing, I woke up the next morning and my mouth and gums and neck started to swell, and the whole time I was with you, Michelle, I never actually was able to feel a lymph node, I was checking for them, never was able to feel it, but that morning I could clearly feel lymph nodes, and they'd all swelled up, coming from up to the ear, to the back of the throat, the whole way around, so, I knew that was never a good sign there, so, I was on my way to work thinking this might pass and I thought, you know what, no, you're better safe than sorry, so I rang Michelle on the way to work and explained that I woke up and I'm starting to feel lymph nodes here and I just want to triple check myself here, so Michelle got an appointment sorted actually that day, so top class service and yeah, I got checked Michelle said that it seemed, it did end up to be a tooth abscess, it was just a complete swelling of the throat.
But you were able to check the lymph nodes for me and just confirm that and They had totally resolved and he said he was never so glad to have a tooth abscess. Definitely. But even, you know, there's been since over these, I've been with Michelle for four years now, and there's been you know, spots that I can sort of feel in my back and, you know, you don't have a good view of them and you're asking other people to look and they wouldn't obviously have the special eyes Michelle has and Just, you know, anything that's even, you know, one tenth bugging you, I wouldn't have hesitated to phone Michelle and ask Michelle Do you mind taking a look?
And most of all, you know, it's just a new pimple or something like that, but it's good just to get that clarification, so Yeah, don't let anything just think to yourself, you know, this will go away, just always if you can get a chance to get it double checked with the team. And how has your life changed from your diagnosis to where you are now in your personal life?
And you're, you talked about your melanoma and your diagnosis and your fears at that stage. And now you're coming, I mean, next year, hopefully you'll be discharged from my service. I'll never be discharged, Michelle. I'll forever be in your care. Don't worry about it. So, so, What has changed in your personal life?
Well as you know, COVID, well, that was, I got out here in the 2nd of February. So a month after that lockdown hit. So a bit like I saw, we sort of picked up new hobbies. So I took to the running. And since I've got discharged I've since ran the Belfast City Marathon. But I was training for that over the summer months.
So, you know, obviously had to learn the importance there of making sure that. If you're out wearing a vest, a t shirt, shorts, you know, you need to be completely covered. There was a stage where, you know, I was a bit afraid of the sun, to be honest. That's right. You know, I was asking questions like, in work, should I be sitting under UV lights and stuff like that, but you explained that if you're wearing your sun cream and you're well covered and you're well protected, that everything should be fine, so.
Dr. McGlynn always says, just don't get burnt. This is it, this is it, so it's good advice actually. Yeah, so I ran the, I ran the marathon there and then the Dublin one, I did in October too, but yeah, it's just to know that, you also treat your skin like you're treating a baby's skin, you know, just make sure that it's, you don't get burnt, you're always wearing your sun cream, even like your eyelids, your back, your ears, your neck you know, your legs, your arms, your face, anything, all covered with sun cream there and as well as that, I went on to get engaged there over last summer too. So a couple of good news stories. So yeah, thank you. Fiancee and family now they they've learned through my mistakes really of have a melanoma and they know how to protect themselves and Look out for any spots, pimples too. So thanks very much. Thank you very much, Gavin.
Thank you.
We are so grateful to Gavin for sharing his story at that event, and thank you to the folks listening. We'd be very interested to hear your feedback. We've embedded a short survey in the text around the podcast platform, so if you could give us any feedback or suggest any future podcast topics, we'd really appreciate that.
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