Loss 50/101: Loss of a left arm and shoulder: Stephen Downes

#100. When you lose your dominant arm, what's worse, the emotional toll, or the physical loss?

This is The Silent Why, a podcast on a mission to chat about grief and see if hope can be found in 101 different types of loss.

Loss #50 of 101: Loss of a left arm and shoulder

Meet Stephen Downes from Cornwall, who was diagnosed with Hodgkin Lymphoma at the age of 22 when he found a lump in his neck on Christmas Day, 1997. After intensive radiotherapy that seemed to be it, until he felt another lump in the same place in 2022.

Diagnosed as a myxofibrosarcoma (a rare malignant, cancerous, tumour) Stephen was told he would need to have his left arm, shoulder and three ribs removed or the cancer would kill him. Just weeks later he had a 14-hour operation to remove it all in Derriford Hospital (a teaching hospital with an integrated Ministry of Defence Hospital Unit).

This is a very honest conversation about a very big, and very recent loss. Stephen talks about how others have responded to his amputation, when he does and doesn't need help, whether he minds people asking about it, why this hasn't been the hardest loss he’s had to face, and what mentality keeps him going and persevering to do the things he loves - like surfing.

For more about Stephen:
https://www.instagram.com/the_onearmedsurfer/
https://www.facebook.com/profile.php?id=100087628640542
https://www.facebook.com/profile.php?id=61557078361569
https://www.linkedin.com/in/onearmedsurfer/

His Podcast: 'Chopped: Strength through Vulnerability': https://open.spotify.com/show/25U9PwuZPoHMzEmqklrten

Plus, the episode we mentioned about the loss of an arm, and a career (Loss 4/101 with Dan Richards): https://www.thesilentwhy.com/podcast/episode/4a76699e/loss-4101-loss-of-a-right-arm-and-shoulder-dan-richards

Transcript

Stephen: 0:02

Hi, my name is Steven and I'm here today to speak about the loss of my left arm, my shoulder, my collarbone, three ribs and a proportion of my chest wall, and also the subsequent feeling of loss of my identity and the life I knew prior to my operation.

Claire : 0:19

Hello, you and thanks for tuning in to The Silent Why podcast. We're on a mission to find 101 different types of loss and to hear from those that have experienced them. Is it possible to find hope in all kinds of loss? We're here to find out. I'm Claire Sandys. And next to me is my lovely other half...

Chris: 0:34

Chris! And in this episode, which is very nearly halfway through our countdown, count up to 101 losses. We're joined by Stephen Downes from Cornwall in England.

Claire : 0:44

That's the lovely coastal bit that sticks out on the bottom left of the UK where people flock for the holidays. It's also great for surfing, which brings us back to today's guest.

Chris: 0:52

Stephen was diagnosed with Hodgkin's lymphoma at the age of 22. In 1997, when he found a lump in his neck on Christmas day, he went through intense radiotherapy which got rid of it. And that was that until he felt a new lump in the same place 25 years later.

Claire : 1:08

Diagnosed as myxofibrosarcoma a rare kind of malignant cancerous tumour, Stephen was told he would need to have his left arm shoulder and three ribs removed or the cancer would kill him.

Stephen: 1:18

No, no, no, no, I can't lose my arm, I'm a surfer mate. You can't take my arm off. I said and my job. I need both my arms for my job. I just remember Lieutenant Colonel Taylor was to the back of the room. And it just went 'this will kill you'.

Claire : 1:31

He underwent a 14 hour operation to remove the cancer in August 2022. In Derriford Hospital. Derriford is a teaching hospital, which has a Ministry of Defence hospital unit integrated into the facility with military personnel working in medical roles there. Hence the titles of Stephen surgeons that he's going to mention later.

Chris: 1:48

This is a very honest conversation about a very big, very recent loss and how Stephens had to come to terms with the loss of his dominant arm, the learning curve that comes with a loss like this, how to learn to surf again, and how others react to it.

Stephen: 2:01

It's an elephant in the room for me where like on the playground, one parent in 12 months has spoken to me about what's going on. And I just find it really strange that, just general curiosity. I think if I saw some I'll be sort of, I'd ask, you know, before the school holidays, you had two arms and you've come back in September, you've got one arm? Do you mind me asking what's happened?

Claire : 2:22

Steven also shared about how this hasn't been the hardest loss he's had to face in life, what mentality he's had towards the loss that keeps him going and why he continues to persevere to do the things that he loves.

Stephen: 2:32

Hope's everything, isn't it? Prior to the operation I was like - I am going to surf again. There's part of me that did question whether I'll be able to do it. Hope is massive, isn't it? You know, I hope prior to the operation that I would be able to see my wife and my kids, I hoped, you know, I will be able to see them growing up.

Chris: 2:48

Even though Stephen has loved so much and his amputation has interrupted so many areas of life, including his passions, such as his love of surfing. He's not necessarily sure he'd magic get back to normal if he could, and he shares why

Claire : 3:01

We end this conversation as we do all of them by asking Stephen what his Herman is

Chris: 3:05

If you have no idea what that is check out the link in the show notes.

Claire : 3:08

But we started this chat by asking Steven to tell us a bit about what life was like for him in 2021 before he found the second lump.

Stephen: 3:19

Yeah, so 2021 I was employed as a telecoms engineer for a large national company, and really enjoyed my job. primarily worked just for one other guy, nice job in Cornwall, just the year earlier, got back with a previous girlfriend of mine, who the more sensible version of me would recognise that she was a keeper at the time. By the way, we'd both come out of relationships, and we happen to sort of get back together. She was living at Manchester, Manchester at the time. So we sort of had a bit of a long distance romance. And then 2021 She was looking to move in down. So my life was set to be all kind of complete really with somebody who I knew loved me. I had a nice steady job that I enjoy doing working with a great guy and I was surfing all the time really surf whenever I wasn't at work or whenever I didn't have children. I'll be getting into sea surfing.

Chris: 4:14

You mentioned Manchester I mean you don't you don't have a college accent. I'm guessing you're from the northwest originally. So have you been How long have been in Cornwall for

Stephen: 4:22

So I'm from Bury. Yeah, eight miles as the crow flies from Manchester town i'll and I moved to Cornwall in 2010

Chris: 4:31

or two very different places.

Stephen: 4:33

Yeah, very, very different. I moved to Cornwall as a teacher. And then after eight years of being a class teacher, I decided to leave and became a telecoms engineer which is also a very different role.

Chris: 4:48

And then did your again you mentioned what we'll get into this a whole lot but surfing was the surfing love and interest there when you were in Barry in Manchester or did that come along? When you move down to New Ever seen Cornwall?

Stephen: 5:01

Yeah. So in 1983 I think my parents emigrated to Australia, adults and civil engineer. My mom is a nurse. I was a nurse. And my mom got a job straight away. And my dad struggled to get a job. And what basically after me and my dad, we would spend a lot of time at the beach, and I just played in the beach or played in the sea. And then you see people on surfboards. So he says, Can I have a surfboard, please, you get the cheapest surfboard from articole Kmart that we lived there for two years, and I just started surfing and then removed back in 1985. And for a few years, we'd come down to Cornwall on holiday for two weeks. I'd like most people who end up moving to Cornwall in their formative years, they've been holiday with their parents in Cornwall, that seems to plant a seed in people that at some point, they want to move back down. And I sold it to my partner at the time. That was his jobs in Cornwall. We can move to Cornwall, a lovely place for the kids to grow. Or the real reason was to be near the sea to go surfing every day, that's the truth of it.

Chris: 6:14

The first bout of cancer that that that was way back, wasn't it that was 20 plus years ago.

Stephen: 6:20

1998. So I still lived in Barrie, and woke up Christmas Day morning, 1997. And just happened to touch my mouth, clavicle there and found a lump in my neck went to my mom and dad's on Christmas day when my partner at the time said to my mom, I found a bit of a lump in my neck. She was up in us in a bit, nothing serious, but you know, get yourself checked out gets off to the doctor. I went to the doctor, they obviously knew straight away with something suspicious. I think they did a biopsy on then on February the 13th. Friday, February the 30 I think it was 22 went into went into it was all handled at the hospital where my mum worked went in sat down there's a few people in the room and the surgeon he just said you might we're gonna get him on for this as a Alright, why so anyway? Well, as I already said you should come walk back in and didn't tell me then that I had cancer is a bit of a strange one really? So you got Hodgkin's lymphoma as that right. Okay, what's that? There are we can be treated possibly with medication, possibly with all the treatments, and that no one actually said you've got cancer. They didn't say those walked out. That's what it's telling him. But he got cancer. So what? Cheyenne, that's cancer, well, I'm going to die. She was like, No, you're not going to die. He she was adamant that you are not going to die. And then it's pivotal to what happened to me really because I signed up for a trial to treat the Hodgkin's lymphoma. And you could even have a massive dose of radiotherapy, a massive dose of chemotherapy or a mixture of the two. And I got a massive dose of radiotherapy. And subsequently, I think 99 through 1000s out in Australia went to Australia for a year and I was paranoid about any law anything that went straight to the dots as I forgot to NGO but I remember speaking to the doctors in Australia, and he says I said I would radiotherapy now how many sessions did I say 20? Here at what in a year? I don't know knowing in a month is that I'm surprised to realise even while we would give 20 sessions or radiotherapy over a year and I was like alright only give it me and once Monday to Friday before week. So God cancer cleared you know cured subsequently seen that the football the David Brooks who plays for baldness, he was diagnosed with Hodgkin's lymphoma a similar age to me, I think and watch the programme about is his diagnosis, his recovery, his treatment and the other lady on from Cancer Research UK and she was talking about the treatment David Brooks had received nowhere in it did it mention radiotherapy. Now, whether that comes from those trials and they've realised that radiotherapy isn't great a tree in Oskins lymphoma, I don't know. But listening to her there was no mention of tree in Hodgkin's lymphoma with radiotherapy. But it works for 25 years, lived a perfectly healthy normal life.

Claire : 9:21

And then it came back. Tell us what happened in 2022.

Stephen: 9:25

Yeah, so So my wife has shares now she moved out so we rekindled our our romance long distance romance COVID Kay made it really difficult. She was just like, I'm gonna move to go more. So I think January February 2022. She moved down. Few weeks later we'd arranged with our older kids. We're gonna go to pizzaexpress Awesome to go go to 100 water park nearby. Me and my son are at the top of the site. He was a bit cold. I picked him up. And I just happened to touch my neck in exactly the same Same place as 25 years earlier was a lump in my neck, it felt exactly the same. So I went down the slide when my son went to SEMA, which wasn't my wife and more interesting. So I've just found a lump in my neck in exactly the same place, which was our girl, thanks for telling me so fortunate was off work the next day went to the GPS told obviously, they're aware of a medical history. They had a look at it, who went up doesn't look suspicious. See, when I went to the hospital down there, they did an ultrasound on it, it looked at it, and they were like, right, we'll take a biopsy today. So they did to find needle biopsies and they also saw a geneticist in the room with them because they were taking it out and then she was looking at the cells and she was going out and can't get a clearer picture from that old car get a clearer picture demanded we could do another one. So it's another one. Now it still can't get a clearer picture. She's out graph to do what's called a call needle biopsy and much thicker sample up okay. Yeah, that's fine. And then so we won't we won't know the results of that for two to three weeks since I'm out okay. And then I went back see that the doctor had seen he did do an endoscopy where they put a tube through your nose and down he shot he was like there's no sign of any throat cancer or anything like that. Remember, this looks really really suspicious and he went with the treatment you've had with what you've got that might be a secondary cancer and often, it will also be present in either your lungs or your intestate. And I remember with ringing my wife on the way home and I was like they said it might be a secondary, and I didn't know at the time it sounds ridiculous. I didn't know secondary cancers are not treatable secondary cancers. That's a death sentence. So two weeks I think two weeks later, I get a phone call. We're just about heading out the door to go to a place in in between new Kuna Comstock called the gunnels it's like a stream or river that flows out and at high tide. Tide fills it in and it's beautiful. It's absolutely beautiful spot. So we're literally just about to go out and get a phone call from the doctor. Anyway, we've got we know what it is. It's a sarcoma. I was like, right, what's up? Amen. So it's a rare tap cancer, as I've never heard of it. And when I said what's the next stage? We don't deal with it to referals he said well, we'll we'll refer to Derriford when it got special a sharp Coleman to sort that out. Okay. Straight obviously I didn't show everyone would do it straight on the farm. Never heard of sarcoma, sarcoma into muscle or start reading about it. But basically, what I read was sarcomas are normally treated with surgery are sorted out great. Feels the size of a golf ball, brilliant new whip this out, like they did 25 years earlier when day surgery, pulled out the tumour in my neck, stitch me up and I thought oh, maybe I'm gonna get away with this. Maybe I'm gonna, they're just going to operate gonna take it out, stitch me up, the children are never going to need to know. So then we go up to Derriford. And I've got this theory about the NHS that I've brought to the surgeons and they've sort of debunked it. I said, the more people in the room, the more serious the problem is. And he was asked another case I won't Well, there's for you in the room when I walked in that day of Derriford in the run up to it. I got letters saying who the surgeons are be saying and they're all sort of these highfalutin naval title so the lead surgeon was Captain surgeon professor or era cars and I think what the surgeon was Lieutenant Colonel Chris Taylor, and I say to my officer, why am I seeing plastic surgeons not get it? I've got to say I've got a rare cancer Why am I seeing plastic surgeons? And then a couple of days before we were due to got I got a phone call who might be like to go for another scan? As Oh, why you have to start a scandal that I would like to go for another one. Can you make it tomorrow? And I thought well it seems quite quick and like yeah, it was actually get it done before he got to Derriford on the Tuesday. I forgot to force her to awesome scared said during a meal stuff like this doesn't happen at this speed. Unless they're concerned. I said I said to get a scan on in the NHS, you know, come tomorrow. I said it doesn't feel right. Anyway. So we went up to Derriford we met and Captain Professor Captain surgeon Professor Roy Ricard, he had a lot of Hastings from line of duty. I don't know if you've ever watched line of duty, but he's looked at the Hastings with his naval attire on with his naval go in our dark kind of gravitas about him. And he was telling me all about the sarcoma and he said it big. So I thought was about the size of a golf ball, and now it's big, it's going down to the ribs, as Oh, right. Okay, anyway, we think we can get it out there. Okay, so bought to get it out. We want a margin of incision around it, we want 10 millimetres of good flesh. So it's encased within it. I was like, right, so looking at the scans, we don't know if we're going to be able to get 10 millimetres of good flesh around it. So we can do a marginal incision where you know, we might get one or two millimetres of flesh, but it's okay. Like that. He's going on and as his speech and I'm sort of looking at him thinking there's three things going through my head you look like Hastings from minor do this all sounds incredibly complicated and there's a book coming in and he went on and you say it out again it out and whatever and whatever. And then he just the far right possibility here is the you might lose your arm. But no, no, no, no psychotic Now, gentlemen, I'm a certain age, you can't take my arm off. I said, I'm my job. I need both males in the job. But I just remember Lieutenant Colonel Taylor was still in the back of the room. And he just went this Walker we're sorry, archive. When they say something of that magnitude. It's almost like a nuclear bomb goes off in your head. You know, it's just what? You can't think anything but you think in 1000 things at the same time, if that makes sense. Your mind's absolutely right. Anyway, so they sort of said to me that we're going to send you for another scan on Friday and we're going to get a much we're gonna get a much clearer picture as to the nature of the sarcoma how it was so so sarcomas are rare subtype of cancer that affect the bone and soft tissue. Like say the rare and I add what's called a Mixel fibrosarcoma, which is a rare subtype of a rare subtype of cancer on East Thisara describing it's more like a jellyfish so it's not like a blob, he said, it's got like, tendrils coming out of it and he said, all that all wrapped around your nerves, your blood, your blood vessels, your muscles. I was like, wow, okay. So anyway, this separate from another scam on a Friday night, trollish. I get there, there's only me there and The radiographer or whatever he is doing the scanning. I've told him I said the same you're gonna amputate my arm, and I said, I need you to find something on this scam doesn't necessitate that the amputation amount is I dug some music on that I'm not really bothered me. So you're probably going to be in there for an hour an hour and a half. He said it's really detailed scam we're going to do as I okay. So anyway, puts radio two on Sara Cox, I think it was and a friend of mine was the drummer in the band elbow, and I was getting the tunnel, the MRI showing the scanner, a lion. And he starts and one day like this by elbow came or during noon and and I thought this is a sign. This is a sign one day like this, this is going to be the day where I find out that they're not going to amputate my son, he does all the scans and I get out anyway, I've got the money shot. I went, alright, brilliant. Instead, I've got the money shot got a really clear picture of it as brilliant, fantastic. So drive all and nothing more RAM it and my mom said he's got the money shot. I said, I told him what was going on. It wouldn't say that unless he knew that he'd seen something that meant I didn't have to allow him amputated shirt. Well, he might just mean he's got a really clear picture to show them what's going on. And why would he say they've got the money shot. So I tried to manifest positivity over the week or now I'm going to find something that means I do not need to have my arm be tired. Didn't work with a ham. So we go about the following Tuesday to Derriford and we could hear the surgery. We could hear him in the room next door sort of laughing. And he's looking at my wife going the laughing they must mean that it's not as serious as they thought I would develop it. Anyway they come in as another surgeon within this time Mr. Adrian marched down. And he went How do you feel about what we what what you were told last week, he said I might lose my arm. The only way you're gonna lose your arm and your shoulder. And you collarbone three ribs and a proportion your chest wall. And I remember my wife turned into a boy. So we're going far right then we're not just going to go far out we're going far right? And it was a strange one that because the on the previous Tuesday when they told me I broke down I was sobbing my eyes out. And this the second time when they told me that it was actually happening it was a slight right. Okay. All right. What's What's the choice, you know? And they had like a multi district multidisciplinary approach to surgery, so they were they were plastic surgeons and they're fit their field of expertise was piecing guys together had been blown up in Iraq and blown up in Afghanistan. And he was like this the surgery pioneered piece and guys back together who steps on it days or whatever. And after that, I don't think I'll ever understand what happened if it's that big. But a friend of mine, a good mate of mine, his brother, I'm doing a lot of namedropping around a drummer from elbow and a lot of at school with his Shawn and Coronation Street answered it, and he somehow has ended up doing a load of work. With soldiers, sailors, Air Force Farmers Association suffer, I think is called. And he's done a lot of work with service men returning service man. And he's like, I think he's got an MBA or an OBE for his work with helping returning servicemen. And I spoke to Anthony since school read that may be bumped into them now. And again, it just messes me out of the blue. And is like my brothers told me what's going on, and I want to help you out. And I can only say that he was like a guardian angel. There was days where the weight of it on you, bearing in mind this probably the first week of July, and uh, my wife said to him, when you're looking to do the surgery do at August the fourth and my wife at Whoa, what, why, why so soon? That doesn't give us any time to find a second opinion there. She said, Is he getting news out there? No, he's getting near his lungs. And if it gets in his lungs, that's it. We can't do anything. I know the times just over three weeks as well. Why are we going to find a second opinion three, I've got three weeks to find a way out of this. And I think he did say to me, there is no easy way out of this for you. And so insanely would message me on day. I don't know how he did it. He just had this sixth sense of whenever I was struggling, I get a message off him. And one of the things he said to me was let go with a fair, it weighs too much a new current carrier. And that sounds like a bit of a throwaway line. But that had I don't know what it was about that sentence. She said, but it was I Okay, yeah, I know that I said I'm afraid to die. And I'm afraid I'm going to die on the operating table on Tuesday, you know, he said these guys know what they're doing. And he said, You're not waking up in a dust bowl in Afghanistan having to get helicoptered to surgery said they're in charge. From the moment you go under. There's no curveballs coming their way they know what they're doing. Now they are in charge. So he said, As hard as it is the news you've been given. He said, unless you've got time to get your head around it. You know, if you're a guy out in Afghanistan, or Iraq or whatever, and you stand in an ad or a booth, you waking up, if you wake up, you wake it often, you're looking at the bits. So this you know, and he said you can start to practice living with one arm and he said you will have a perfectly happy life, trust me. And now the final week, not in not in a bullish way, not in not full of bravado that I just want to get done. Now. Let's just go let's just go and do it. And whatever will be will be and the hardest thing about it was if I died on the operating table, I wasn't going to know. They did tell me afterwards that the trust didn't want to do this operation. It's a fight for it. We thought you were fit enough and healthy enough to survive the operation. And we really fought for this button, the thought of what that would leave behind for my wife and my parents, my children. The on on the Wiser if she die when you've gone under is what's left behind. So I remember on the day of the surgery I saw because you know I'm having this massive Lifesaver surgery, 14 hour surgeries for different different surgical teams. But we got there at half past six in the morning and I thought we you know, that would be like our high state and there was a queue of people getting onto this. It was like a triage to surgeries. It's like a cattle market. And there must have been 30 people queuing and rakudo and they were they were gonna let my wife didn't because they were like No, no, because it COVID Do not know it's only it's only the she's like no I'm coming in I'm not leaving it. Anyway, so the surgeons came and Professor Ricard gets a great big markup and out over WhatsApp so you're not you're not putting an arrow on me. I are an act mark just bought him out. Yeah, we are immobile. We don't shut their own arm off do ours who? So he drew a great big arrow on me. And he's like, do you agree? That's the arm? Oh, yeah, that's the arm. It was I thought they'd be a bit more technical than that. They realise it just been marking me with a viral. And but the the, the initiatives came in and he held my hand initiative. She held my hand down the corridor, and she was like, You're so and I'm terrified. I'm so scared. I can't tell you how scared I am. And then this I think there's three and a success. And one of the guys is IO Cass and I'm terrified. I'm really scared. I'm going to go on going and we're going to wake up. And he was like, you're going to wake up and what you're worried about it. And then he I think that was the Thursday the Friday morning Mr. Mark van came see me at EA. It was like surgery went really well. It went better than we could have expected. Was that alright, it went we got a really good margin of incision around it's probably got 20 millimetres around it. So we've got it all out was fantastic. And if they hadn't got it all out, if they saw it, there was any laughs I would have. I would have either a bit of radiotherapy or chemotherapy.

Chris: 24:34

How long was the period of time between the appointment where we told we're going to need to amputate to waking up in hospital having had the surgery, how long a gap was that?

Stephen: 24:44

The first time they said I might lose my arm? That would have been about four and a half where you know the whole thing for Vine and a lump in my neck and Dre was just under 10 weeks. Yeah, and it happened at such at breakneck speed almost that I only think now that I'm starting to maybe process if that makes sense. And that there's still a part of me that feels like this happened to somebody else that I'm like a voyeur on watching this happen to somebody I know it happened to me because I've only got one arm but this part of it that's not as bad as you think it would be. Because you recover. You get better. I was out of hospital within 10 days, I think on day 11. My son came. And he's like, can you make HotWheels chart we made out. So yeah, okay, I don't know, I'm going to do it because I've only got one hand. But it said into normality like that you child, just see, and you exactly as you were before, don't wanna make out wheels truck, give me some Lego women out. I didn't want my kids to be the ones growing up. Without their doubt. My son was five years old. And I told him my daughter was 12. And my daughter's reaction was cool. Dad, you belong Ironman, where you get where you get like a robotic arm? Or as I know, there's no robotic arms, because I am like Ironman. I'm like, I'm not entirely sure I will.

Claire : 26:10

I was sort of just trying to imagine, you know what it would be like, and there's, there's the emotional side of it of, oh, you know, this is my arm. And that's not going to be there anymore. And trying to get your head around that. But then there's obviously the practical side of not being able to do things in the same way that you did them before and everything being a lot harder. I have trouble imagining which of those is going to be the hardest to get through? Or is it like a joint thing as they kind of work together? What, what is the hardest bit of coming to terms with something like this?

Unknown: 26:38

It's your loss of self I would say everything that my life was, was gone in 10 weeks really? Well, that's not true. Is it? Because my wife looked me I've got the lower my parents, my kids. But certainly I've served for four years. And you know, also boy surfing in whatever hospital I was sought to grab. I'm going to go down the beach. Soon as I'm out of Mossville, I'm going down the beach. I'm trailing the sand between my toes. I'm looking at see their elbow was when I got out of hospital, probably slept solid letter, maybe two weeks, three weeks. And no, I didn't want to impose more upon my wife. I didn't want her to have to do more than she already did. So I was quite set on doing things myself and that from the start, but you're dead right that when I like a bagel in the morning. The first few times I tried to butcher a bagel and you just chasing the bagel across the breadboard with the knife. I remember standing the kitchen. I can't live like this. I cannot live like this. There's no way I can live like this. But then maybe three meals a day I remember buttering a bagel and it was like your second nature. I've just done that. You do that you've got two choices. You either adapt to it and think I'm alive. I am so lucky. I'm alive. In those first two weeks. I didn't want to see anyone I didn't want to go out. And I remember a really good mate of mine. I'm more of a texter than a ringer. So he texts me and I didn't reply to his tax. I think he texts me again. I didn't reply. Then he rang me to switch the phone off. No no did didn't answer then he rang me again. Switch me fall off. And then maybe 10 minutes later does that banging the door? Not gonna leave me alone. So I went down and I made what do you want? When I want you to come outside? I'm not going outside me. I am not stepping out of the house. I don't want anyone to see me. I cannot face the world. And he just won't. I don't want to break it to you. Mm hmm. Well, no one cares what you look like. Everyone's too busy with their own life. No, I'm really lucky where we live we live 20 metres 30 metres from the cliff edge in the UK. So it was like just walk to the edge just walk to narrow Cliff women just look out over the sea. Come on. So we walked out. Well, there were a lot no one cares, man. I was looking at you going Oh, yeah. And I look back at that. And that was you know, that got me out of the house for the first time. I think everything's a first isn't it. He's like, I've got to get out the house and then got to get out the house on my own and because of the phantom limb pain, my arm is stuck at a right angle, my left arm and you're walking down the street and it feels as though your arm is stuck sort of stuck at a right angle sticking out my brains thinking everyone can see me or look an idiot my arm sticking out that a ridiculous right angle. There's no longer see around major chopped off. It's just in your head.

Claire : 29:36

That's fascinating to like, sort of straight out.

Stephen: 29:38

No. So like that.

Claire : 29:41

Oh okay, in front of you.

Stephen: 29:43

And then I asked one of the surgicals team, one of them came to see me a few times and one of the final days before I got discharged. I set my arm stuck at a right angle. I said is that where where they would have severed the nerve and that's the sort of the last signal that my brain sent out. Some out and sure how that would make sense. She said, Because in surgery her arm was either up there like she did say she went, you're lucky it's not stuck up there really? Well, yes, those tell you that it is better than it's stuck down on my side not, not above my head, the VP did tribe and all sorts of different drugs. Some of them have been I've had a really negative effect on me, some of them have really meant in a dark place. So Central LA, I'm not taking them anymore.

Claire : 30:29

One of the things that we ask all of our guests is what their relationship with the question why has been? Have you struggled with asking why me at all? Is that something that's crosses your mind?

Stephen: 30:39

Yeah, very much so. So I kept myself relatively healthy. You know, it wasn't a temple of health, but I kept myself a lot healthier than some people and when, certainly when you swim in and you see people who are really, really quite unhealthy, I will say to my wife, and I, you know, appoint an MSA and I get my arm call. There is an element of it. That seems cancer is unfair isn't it comes as a really cruel, horrible disease. It doesn't care about your socio economic status. It doesn't care about your age, it doesn't care about anything. So that there is an element there really is of why did this happen to me. But the more I learn about sarcoma, and sarcomas are notoriously difficult to detect, the notoriously difficult to treat. And they're often only detected when they're too late. So people often by the time they found it, it's got to the lungs, it's spread. So there is an element that I feel like I'm lucky, actually, I'm one of the lucky ones who had I not found, you know, there was no telltale signs that really no, didn't feel unwell. The but the one thing that was was when I go to sleep at night, I'd get really bad, too. Sometimes I got really bad pins and needles in my left arm. And then what were one of the surgeons asked me that on one of the either the first or second time we met, he went Do you have any tingle in your arm at night. And I sort of paused. Because I was at that point, I was trying to think I'm getting out of this without getting my arm cut off. And I went yeah, I do. Why when we think that's the tumour pressing on your blood vessels when you're lying down. And he said, that's what's causing the blood off to your arm. That's what's giving you the pins and needles sensation. In that was a bit. And then when I started to think about that, I'd been having pins and needles on an automatic arm for maybe four or five years, only very intermittently at first. But by 2022, it was probably if I hadn't maybe five nights a week, I was really struggling to get to sleep because of the sensation in my arm.

Chris: 32:49

And come back to the friend that you know, knock on the door. That's all part of the journey of you know, to use the sort of cliche, almost coming to terms with you know, we're only one over two years on from this major change for you what what's the experience been like for you of coming to terms with what has happened?

Stephen: 33:08

I've been really, really lucky. I have been able to accept what's happened. And I think that's a really big part of it, isn't it accepting and I could say I understand why I had a tumour the size of a can of baked beans growing from my clavicle down to an adult not been removed. I wouldn't be alive. Here. I'm not gonna say, you know, I've cried an incredible amount. We still do, we're still I came after we have an a person. They're happy day. I'll just become a combine. I was overcome by emotion and just find myself sobbing. And I guess that's trauma. That's just I started doing acupuncture. And she she's like, one of the things acupuncture is good is good to release in trauma. And she said, You must have so much trauma. Are you carrying so much trauma so I can feel it in and around your neck so tight. I think I'd accepted what was happening the week before surgery. And I knew I was coming out with one out. But I also knew that I wanted my response to it to be a positive one primarily for my children. So they could see how I dealt with how I reacted to something of the magnitude that happened. And hopefully they can see that and when my dad had his arm cut off, he got kind of got on with it. So I've met some amazing people over the last 12 months that I wouldn't have mounted beside ASB continue to. I've met some truly incredible people over the last 12 months. And I've said to a few people that if a fairy godmother came down and said to me tomorrow you can have your arm back tomorrow you have your own life back tomorrow. I genuinely don't know if I'll take it because of the direction this is as push man. Well, it's easy to say that in if she actually slow it down tomorrow when there it is as your arm. You can have it that would be saying no, I don't know but It's been an incredible journey that I've been on. And like I say, I've met so many incredible people. So we were up at a festival in football Akun. And I was quite nervous about what's happened. The guy I saw half know next to me. And I said, it's amazing people are opening up with telling me these really incredible stories about their lives. I said, it's really touch into it. And we haven't, that's because you're so open about what's happened. He said, your openness encourages other people to speak about what's going on for them. That was never, I've never seen it like that. It's what you do, the way you speak about it empowers other people to think they can speak about it. Unless you're very, very, very, very fortunate human being none of us go through life without experiencing some pain, some trauma, some loss, some grief, that's part of the package of life, isn't it, you have to accept that that is all part of life, to enjoy. Beautiful sunsets to enjoy, you know, walked in the lake, do whatever you think is the right. Yeah, we all go through lost or we have gone through grief, trauma, pain that's for is that part of the package of life, isn't it?

Claire : 36:09

Had you been through other losses before this that had helped with this journey?

Stephen: 36:13

Yeah, so I've, I've got two children, separated from both, both of the mums. And coming to terms with the separation, for separation really, from your children, is one of the hardest things I think you could ever face in your life. From waking up every morning with the kids. You know, some mornings when when my son's an early riser, he won't think anything and getting up at five in the morning. And when you're in that moment, when you're up at quarter to six and you know our God, I'm so tired. You don't see your miss it. But when it's taken away from you, you sort of crave being woken up at six o'clock, by you know, you can a little feet run an errand boy, Daddy, Daddy, I'm all I know, we go back to bed. Now I'm awake, okay, let's go. And you know, putting him to bed at night. So I'm saving for my daughter, the separation from them, has been really, really hard to take. And that's where I first started having counselling when I first started. I've had various counselling and what I've learned, I think people who are struggling and you get counselling suggested it's not a panacea. It's not going to make the pain go away. Doesn't make the hurt. Galway just gives you a means of dealing with it of coping with it. And I think that's what I've learned through various counselling that that the pain of trauma doesn't. You can't just magic it away. You have to accept it, you have to own it. And you have to kind of adapt to it, don't you? That's, I think I think that's one of the main things I've learned is about adapting.

Claire : 37:57

One of the things about loss of a limb is that it's an obvious loss, isn't it, people will look at you and they will see what you've lost physically. And that must be very difficult because you're thrown into the situation of maybe them talking about it or them deciding not to talk about it, whether you want to or not a lot of people's losses you can hide or they're just bereavements that, that you can sort of not talk about if you choose to or even lie about if you want to, but you can't really avoid that. And I think when you see somebody without a limb, your brain does sort of want to fill in that gap. So there probably is a moment whether we want to or not of staring not, you know, trying to be rude looking but you think your brains like there's something missing there? Do you find that people? Do they talk about it with you? Or do they tend to avoid it? What is the sort of reaction you get from other people?

Stephen: 38:40

That's a good question that I think people are afraid to ask. I think people are afraid to actually acknowledge it. And as I don't know if you've heard of Bethany Hamilton, but she's a surfer and when she was a teenager, she she lost her arm in a shark attack. And I read somewhere that Bethany Hamilton said, You should never ask an amputee, the reason behind why they're an amputee. And I sort of disagree with that because it's an elephant in the room for me were like, on the playground, one parent in 12 months have spoken to me about what's going on. And I just find it really strange. That just general curiosity. I think if I saw some I saw I had asked you know, before the school holidays, you had two arms and you've come back in September. You've got one arm. Do you mind me asking what's up? But I think people are scared to ask. Kids are brilliant because kids will just go you got one arm? We go Yeah, yeah. And the mums or dads will go off when really sure. So no, sorry. I've got one out too early pointing out the blindingly obvious. There is a sensor on AES. He did write that I've said this to people that if I saw someone walking down the street, if I had two arms and I saw someone walking down the street or one hour, my natural reaction will be to do a double take. So you got Wow. Because you don't see a lot of people with one arm Do you see there's more people who've lost a bit of a leg who else and you can get really cool engineered prosthetic limbs now you see, there's far more lower limb amputee so I'm not offended or I'm not upset by people stare a lot of those stare is not the right word because like I said they do a double say like, Oh, he's got Wow. But I would do the same I think it's human curiosity, isn't it to all sorts that very few people offer to help. And that's fine because I don't. It's not that I don't want your help. And I think there's a misconception around why people with a disability don't want your help. I don't I don't want your help. Because I can't be reliant on people that I can't be reliant on people to tie my shoe laces for me. So the first few weeks, my wife has time a shoe laces and so I figured out how to do it, but they've come and done in town. And I'm just going to stop a random stranger and say, Excuse me, can you tie my shoelaces, please? I can't do it. And the same was not my goal. And one of the only people has ever offered to help me is a little old lady in Sainsbury's because obviously torn do a bottle like a coke bottle or whatever you can't younger two months. So you have to kind of clump the bottle between this is my technique anyway, clumped the bottle between my feet and then unscrew it. I was just about to do in a little lady what I show she must have been over somebody. She's like, Can I help you that day? I was like, No, I genuinely really appreciate what you're offering. And I will always say to people that to say do you need a handle? So no, but I genuinely am grateful that you've offered. I do appreciate it, but it's just something I've got to do. And it's not because I don't want people to do certain things. I'll say can you help me with that. But the prime thing is less I can do it myself you rely on on other people and unless you're gonna have like, an entourage behind me. Like that's my shoe tire. That's my coat, zipper rocker. That's my bottle undoer. Video, you've got to learn yourself, haven't you? That's my take on it.

Chris: 41:51

What sort of impact would you ideally like to have whether it is on individuals on groups, if you are sharing something of your experience? What effect would you really love your story to have on other people, whether it's somebody in the playground, or a group of people that you're addressing,

Stephen: 42:08

I did an assembly in a school and it was me surfing and the first few waves I didn't catch the next year in Ellicott the next year, I got a bit closer. And the final way is a stood upon. And afterwards one of the children are but maybe before the video, one of the children said if you stood up, can you stand up on a surfboard? And and I said no, not Yeah. But at the end the head teacher when the most powerful bit in that assembly children was when Mr. Downs said Not yet. I left and I thought wow. Yeah. And that's Carol C DUAC, who was a an educational psychologist, she came up with the power of yet. So I've been doing a few assemblies in schools. And I think that's the message I'll try to get over that. You don't have to succeed at something the very first time you do it, you don't even have to succeed it the 10th time or the 20th time or the 100th sign. You can just keep going. And eventually you will get there. And I think that's what I would like my assemblies. And if I speak to other people to be about that. Give yourself time, be kind to yourself, but be determined. And you can achieve that. Like once you start the algorithm on Instagram once you start clicking on one person with disability doing something amazing. Start it starts to open up a whole lot. I've seen a guy climbing Everest with no legs, you can achieve whatever you want to achieve. We just give yourself time.

Claire : 43:27

How long was it after the operation that you were back on a surfboard then?

Stephen: 43:30

I first got in the sea after six months. And me and my daughter went out and it was brilliant because it was a lovely sunny day ended February last year. Nice clean waves. I just message me dogs. I'm going to get into see if you want to come in with me. She was like yeah, so we went in. I was I wasn't trying to stand out. I was just literally it's just about being in the sea about catching some waves. And then maybe two weeks later, I got a new board. And I was on it. At the time. It seems such a long time I've been out of the water because I said surf every day for cord prior to the operation. So six months out the water seemed like an incredible amount of time. But when I look back now it's like wow, six months after that operation. I was getting back in the sea. I'd probably started by about sort of April time it was I was getting my head round it I was able to catch waves. And then think in June we went up to the wave in Bristol. Were two good mates a mind. We went for the weekend military serve the first serve on the Saturday I sort of I did okay but about 50% of the ways I went for second serve. My mate was on the inside. And he saw me get away and it made you the best surfer in the pool. He said watching you absolutely flying. It won't make I can't believe what I'm what you like the best surf I'd buy the next athlete. I'm not going to be able to replicate and add an even better serve the next day. And people coming up to me afterwards like me, that's incredible. And to me it's just surfing, just doing the thing I like to do I think that's fun. Other things that I find with kids where he's trying to say, oh, you know, you can learn maths you can, you've got to really want to do it to the facts I've learned to surf again is because I really liked surfing and I really wanted to do it. And there was nothing whilst he was not you know, the operation hadn't gone as well as the RDF mould or radiotherapy loaded chemotherapy that might have just destroyed my body. So I am fortunate that Yes, they've amputate my arm but I've been I've been interviewing some guys about answers for the company I work for and the treatment they've had has left them completely debilitated there's no way if I'd have been through what they've been through I'd have been getting in the sea even now I don't seem boy yeah it's about six months after surgery that I went in.

Chris: 45:44

And you know we use this podcast to explore lots of different types of loss to see no can hope exist where does hope exist in all these different types of loss So in your experience, you know, how hopeful have you been throughout, how has hope featured in your story?

Stephen: 45:59

Hope's everything isn't it? Hope is the ability to dream I guess isn't it prior to the operate as I'm going to search again? This part I mean, did question whether Abell to do it. Yeah, what was massive, isn't it because you know, I hope prior to the operation that I would Belsey my wife and my kids I hoped that you know, I will be able to play Hot Wheels again. My son's just getting into started playing football. So I hope to be around for them. I hope to see them growing up. I hope to surf again. That's the ability to dream isn't it? Hold allows you to dream?

Claire : 46:30

One thing I just want to ask is there one practical thing that affects you day to day that is still incredibly frustrating, or have you just adjusted to everything?

Stephen: 46:40

Yeah, trying to get your trousers on the one hand is difficult. So reason they often start putting the leggings back to front. And that's one of the things that I've been putting out some videos on YouTube of people said I quite liked the videos you do where you show you do things and one of the things we'll be putting the trousers on but it's not I'm not sure that people want to see me putting my trousers on there with with one nice things I've adapted to really didn't like drive and obviously you can't just drive a car you know, outside the vehicle adapted but yeah, my surfboards been adapted. But other than that, like I use a normal laptop, you just get used to sort of spreading your fingers our concern was you have to do Ctrl Alt Delete is really difficult. I have to hold a pencil in my MakerBot oh and open an account using a can opener is impossible. My wife went away last November and I went out to a mate of mines and his wife made those tuna mayonnaise sandwiches. There's a lovely tuna mayonnaise some and I went home and I saw a really fancy tuna mayonnaise sandwich another one and I looked at the cams and none of them had a ring pull on and I thought right well I'm not I'm not going to be beat and now I'm not going to let this just prevent me I've in my tuna mayonnaise sandwich. I thought I was being really resilient anywhere struggles with the tin opener I had it under the chin I was holding it rubbish fee. I was doing all sorts. Eventually I did it and I made the tuna mayonnaise somewhere and afterwards I thought first I was brilliant. So resilient. Are you out? Worry you are and I thought No that was nonsense. You spent 30 minutes there opening a car. I lived two minutes from a Tesco Express. I could have just walked to Tesco Express and got some tuna with a wrinkle that would have been the smarter way of doing it wouldn't it rather than struggling and making life hard for myself? Why make life difficult when just water Tesco Express

Claire : 48:17

Didn't it tastes better though because of the effort you put in to get to it

Stephen: 48:20

Yeah, no it did. Yeah, it did.

Chris: 48:23

Well, it's really well done. It was only it was I think it was today actually earlier today just completely Coincidentally, I saw a post on Instagram of you know one of these accounts that sort of puts out good news or just inspiring bits they see other people posting and somebody had posted and they they'd reached did reposted this, of someone just posting a small account of I was in the supermarket saw someone buying like a bag of shredded lettuce I thought to myself Who on earth needs shredded lettuce? What a lazy thing you know, who needs to shred just shred your lettuce at home. But then there was something where they actually realised not everyone can shred their own lettuce, you know, that might be a really, really helpful thing for somebody that can't hold a ball of iceberg lettuce and then use a knife to cut it. So it's I think it's really healthy just to be aware of this stuff.

Claire : 49:09

I think they aren't the videos you see I saw the one of you buttering showing you how you butter things, and that is really interesting. People do want to see that stuff. It gives us a taste of oh, you know, we have it quite easy with a lot of stuff. And it's good to not take things for granted so I can see why people really enjoy just seeing what that looks like.

Stephen: 49:24

There's quite a lot of positive message about that where people have said, You know what, I was having a rubbish day. And then I watched that video of you buttering up bread. And I just thought he's getting on with it. I should get on with it. And he's really nice when people message you stuff that I when people got you're inspiring me, you're an inspiration and I'm not I'm just doing things I like doing.

Chris: 49:42

Well ask a final question. It's been such a delight to be able to talk with you. So thank you for inspiring us sharing everything that you have really, really loved it. And let's finish Stephen, we want to hear what's your Herman?

Stephen: 49:55

Yeah, so I've given a bit of thought to this, and I'm stealing something I've heard someone else say, it was a lady who's one of them. meriton endurance runners ultra marathon runners whose other legs amputated below the knee, I think. And she said her special power was her ability to endure. And that really resonated with me. And I think, through the separation from my children to having cancer, as you know, my wife said, it's really an issue and you've lived with the spectre of cancer throughout your entire adult life, basically. And I think that my Herman is the ability to endure. And when I read your descriptions of what Herman is, it's not something that can be boiled. It's not something you can get from the shot. It's something that you acquire, through loss through pain, through grief, through heartache. And I think what I've learned is that I can enjoy for quite a while. And I think that's the message that I would probably like to pass on to people that, you know, I didn't think that I would be able to cope with the amputation of my arm. When they told me my arm was going on, I did not think I will be able to deal with this. But a house and my life just don't really look here, my life has gone back to not far off what it used to be really, and I think we all probably are able to endure a lot of hardship to to get to the enjoyment of life.

Claire : 51:14

Endurance, I'm sure you know what it's like to enjoy something. But also, like Steven said, maybe you know what it's like to find enjoyment after the enduring. It's not uncommon to find that the joy you experience after loss is actually because of the loss itself. This is why you'll often hear our guests say that some of the best bits about life now have come through and because of their grief, almost like the two become intertwined and inseparable.

Chris: 51:38

Thank you, Stephen for sharing your story. To find out more about him, he's on Instagram and has a podcast

called 'Chopped: 51:44

strength through vulnerability'. We'll put links to both of those in the shownotes. We also have another episode that we did early in our podcast series with a guy called Dan Richards who was in a nasty motorbike crash and woke up to find it lost his right arm and shoulder and his military career. We'll put a link in the show notes to that too. For more about us, visit www.thesilentwhy.com online or@thesilentwhypod on social media,

Claire : 52:08

And you can support the show through www.buymeacoffee.com/thesilentwhy, as a one off tip from my hard work all by helping to support me monthly. You can also now buy a Herman to send to someone who's going through a hard time. Sometimes it's really difficult to know what to say to people who are facing loss, as demonstrated in our chat with Steven flowers don't always seem right and don't last long. Candles and chocolates can feel a bit girly. But Herman's Well, they say everything that you want to convey. I might not have the words for you right now. But I don't want you to feel like you're alone. For more information on these handmade grief companions, visit www.thehermancompany.com where you'll find all the information you ever wanted on Herman's.

Chris: 52:45

we're finishing this episode like we do with all of our last chats with a quote this time from Carol Dweck, who Steven mentioned earlier from her book mindset, the new psychology of success.

Claire : 52:56

"Why waste time proving over and over how great you are when you could be getting better? Why hide deficiencies instead of overcoming them? Why look for friends or partners who will just shore up your self esteem instead of ones that will also challenge you to grow. And why seek out the tried and the true instead of experiences that will stretch you. The passion for stretching yourself and sticking to it even or especially when it's not going well is the hallmark of growth mindset. This is the mindset that allows people to thrive during some of the most challenging times in their lives."