Spot: Holding Someone Through Cancer, Sean Orr

SPOT: a slightly different format to the Roundtable discussions where we Spotlight a very personal story from Sean Orr.

Cancer doesn’t just happen to the person with the diagnosis. It happens to the partner making the calls, the spouse lying awake, the carer holding it together in public and falling apart in private.

We sit down with Sean Orr the man behind Menshare Listening Group, speaking not as a facilitator or coach but as a husband supporting his wife Lise Orr through a rare, incurable cancer that moves towards multiple myeloma. Sean walks us through the moment their world changed, the long stretch of uncertainty between symptoms and answers, and the brutal reality of treatment. We also talk about the part that rarely gets named: the hidden trauma of caring, the pressure to “stay strong”, and what it costs when you run on autopilot for too long.

From relationship strain and the loss of normal routines to the fear of what comes next, Sean keeps the conversation grounded and practical. He shares coping strategies for caregiver stress and carer burnout, including honest self-check-ins, counselling, hypnotherapy, safe ways to release emotion, and why talking to the right people can be life-saving. We also signpost real support for cancer carers across Sussex & Surrey, including Macmillan, carer services, The Olive Tree, complementary therapies, and local listening circles.

If you’re caring for someone with cancer, or you love someone who is, subscribe, share this with a friend, so more carers can find the support they deserve. THANK YOU.

Please click on 'Send a text' above & join our Facebook group to share your perspective and suggestions for future topics - Thank you for your interest! Clive.

Transcript

Welcome And Why This Matters

SPEAKER_01 0:00

Welcome to the Sussex and Surrey soapbox. Real viewpoints, real opinions, and a balanced conversation on the community issues that matter.

Bringing The Hidden Pain Out

SPEAKER_02 0:10

It's a Sussex and Surrey soapbox, and uh now we're going to get into quite a sensitive topic that affects so many people in the community. It's all about cancer and supporting loved ones through the cancer journey. And with us now, we've got the brilliant Sean Orr from Men Share Listening Group with a slightly different hat on. Uh, because you've been through a personal journey with this, and you came up with this idea to really share it from the heart, the emotions and everything that goes with this. Let's just start with what are we trying to achieve by people listening to this episode? What are you hoping to impart as we go through this conversation?

SPEAKER_00 0:48

Yeah, I'm doing this really just to kind of um just to kind of bring the internal world to the external world, you know. Sometimes when we go through this, we know we don't really look for that kind of support. We we think we're okay, you know, we're on a um, you know, we're an autopilot, you know, I'll just get on with it. And um the purpose for me coming today is to highlight the importance of services of support, like carer support, um, and groups and therapists and things like that. Um there's a lot of hidden trauma when you're supporting somebody who's going through cancer and you can't see it uh until it presents itself. And to me, it has presented itself a uh quite a few times now, and um you know, to watch your loved one deteriorate and taking all these chemicals and going through all these procedures um and seeing them change and their bodies change and their mental health change, um it's it's just it's it's just heart destroying really. And uh so I wanted to kind of give back and and hopefully if my story or or questions to me about it, uh if I can give somebody a little bit of strategy or a bit of hope that they might just stop and think, you know what, I actually do need support um because I am struggling and I can't deny it anymore. Um and that goes for man, woman, you know, um and I know parents um and carers have children who who go through it as well. So uh it everyone needs that kind of support really.

Diagnosis Shock And The Wait

SPEAKER_02 2:19

So if you're listening at home and you are supporting someone going through the cancer journey, no matter who they are, if there is a loved one, uh the words from Sean as we go through his comment may help you, and at the end we'll signpost some local uh charities and groups to help you across Sussex and Surrey. So, Sean, if it's okay with you, let's start at the beginning. When did this start and how did that feel?

SPEAKER_00 2:45

Started in uh just at the tail end of the pandemic um in 2021. Um it was a bit of a horrendous week. Um the the week I uh I got made redundant, um and um Lisa got diagnosed that she has a plasma cytoma, which is a rare incurable form of cancer. Um to put it in layman's terms, it's a cluster of um white cells um create a lesion and from that form it forms then into myeloma, obviously, it goes into the bones and uh then it becomes multiple myeloma, and that's where she is now. Uh so it's incurable.

SPEAKER_02 3:23

So yeah, we we talked about it But also at the start when she was having the symptoms during the actual diagnostics and getting to that conclude that must have been troubling as well, right? Because quite often it's the weight between seeing the symptoms and getting it diagnosed.

SPEAKER_00 3:38

Yeah, absolutely. Um there's there's no um there's no words to describe it really. Um from go from going into hospital with serious neck pain to then say, Oh yeah, we'll we'll we've taken all the uh the MRIs and we'll come back to you. Um we had a porter in the hospital um who literally just says to my wife it's cancer. And he was a porter. Um and we were like, he can't say that, you know, and uh and he wasn't wrong, you know, um th all all the Simpsons and the signs signs of what it was, he he he must have been I don't know, he must have been qualified in, I don't know why, but yeah, the the waiting, the journey between the two, yeah, it was for Lisa her world, internal world um was was up in the air and she and she was frightened and scared, um, and and there was confusion there as well.

SPEAKER_02 4:28

It's super nice of you to share this, and it's very personal um and it's very sensitive. And those listening at home, hopefully this is gonna help you navigate that with loved ones in your life with cancer, because it occurs to roughly one in two people these days, right?

SPEAKER_00 4:44

Yeah, absolutely. Yeah, one in two people, and yeah, the journey the journey from that point of um heading towards what it is. Um the the actual um tumour is next to my wife's stem cell, which is three millimetres away from the stem cell. So um when you get told that my wife's face just changed, and we were heading towards radotherapy, which in itself is a brutal um procedure. Now, before that, my wife had to have a procedure where they went in for an upper nose into her head, cut a bone out from the skull so they could do a biopsy. That in itself was brutal. Um they talk about warriors and they talk about strong people, but my wife is the ultimate warrior for what she's been through. I you know, I I sometimes I think like it's so easy to be on this side as a carer and say all the right things and and and hold their hands and give them encouragement. But when you see their internal world become external, you know, crying through the night, the you know, the the the the dreams which are bad, you know, the dreams dreaming of something, what's the worst case scenario and um not seeing their grandkids again or not seeing their children again. Um I've seen it all and I've felt it all, I've seen the tears. Um the radio the radotherapy journey was was was quite horrific as well, you know. The you know, every day going up there and she had to wear this this kind of man-made mask and then coming home and uh being in pain, and then after that saying, Oh yeah, it's it's not touched it, and then it's well what's next? Uh, and it's just constant bombardment of uh the unknown.

Carer Pressure And Trauma Autopilot

SPEAKER_02 6:29

Um one thing's for sure, your partner Lisa is very lucky to have you as a partner, uh, 100%. You talk a lot about what she's gone through, and and of course, naturally, but for you, did you feel pressure to be strong, to be that strong person, that support, that positivity, and and and how did that play out on you personally?

SPEAKER_00 6:51

Yeah, I I had to be yeah, I had to be strong. Um this is kind of round two in my life. Round one, my wife my my mum had multiple sclerosis, and as an eight-year-old child, and I had to care for her uh and go through like-minded um suffering. So coming into this uh is kind of giving me that extra um layer of understanding. Um but it's not it it's not easy, you know. I have to be strong and I have to tell myself that, and I have to tell everyone it's gonna be alright, I have to tell my wife it's gonna be alright. And um, but in the morning when I'm sat there watching TV on my own, crying my eyes out, thinking, what does the future hold? Um it's scary.

SPEAKER_02 7:34

Where do you get your strength and your support from? Because I mean, in all the time I've known you, you're you're a strong chap, you help everyone else. Um but where do you get your cup topped up from? You know, where do you get the energy? Where do you get your source of support?

SPEAKER_00 7:48

If you want an honest answer, trauma. Trauma i gives me the strength, and that sounds a bit daft, but because I've been through it with my mum, it's kind of it's kind of put me on autopilot, you know. My feelings the empathy side of it is not there, if that makes sense. I'm not you know, I'm not crying, I'm not like kind of showing her my tears and saying I'm scared. Um the trauma is is actually driving my bus. And you know, and it's making me feel like right, well, I'll have to deal with that another time. It's her right now. And um and that's yeah, and that's and that's what it's about, really. And uh and maybe one day down the line, I might be the passenger on that bus and I might have to get some support around it. Because when you're in it, you don't see it, and when you're out of it, that's when it gets you.

When Cancer Changes A Relationship

SPEAKER_02 8:38

And and when you've been going through this, obviously we're talking about your partner Lisa. If you don't mind me asking, is that has that changed the relationship? Obviously, you're you're you're you're caring, you're there, but how how has the relationship dynamic changed as well?

SPEAKER_00 8:54

Because this might resonate with people going through something similar to well the yeah, I mean the first thing what what changes is um you know is the dynamic of the relationship, and that could start with um my wife being in pain and and not feeling you know the um the intimacy sometimes because you know it it's at the forefront that can that can affect the relationship, but more importantly, the the the behaviour changes, you know, where when somebody's in pain, they might they're not gonna be as patient or they might be a little bit kind of uh impatient with their reactions and you know sometimes I might forget to get something what's really important, um, and that and that can be quite challenging. And you have to I have to check in to say, well look, is because that's what they're going through, you know, and she has been in constant pain all the time with this. Um and you know, if anyone listening, you know, it's hard not to take it personally as a as a as a I you know, I'm number one, I'm a husband, number two I'm a carer, but in my role as carer, I have to check in all the time. Sometimes I might react, sometimes I t I do take it personally and I and I and I react. But then I have to check in with myself to say it's not it's not my wife, it's it's what she's going through. Um and funny enough, you know, I always say this, you know, if cancer was in the boxing ring, I would love to do some damage to it because it's it's it's it's a it's a w it's an enemy what dis deserves to be destroyed forever. Um But yeah, you know, it's m it's it's hard to really look through the eyes. People say, Sean, how do you do it? How do you do you know how do you under how do you get through it? How do sometimes you can't answer that because you just have to take it day by day.

SPEAKER_02 10:44

And it is day by day because the story and where it goes, this is partly the problem, right? The unknowns of what com comes next and not quite through the other side yet. What's what's coming up now for you for your other half?

SPEAKER_00 11:00

Yeah, well well, along with the rhythm therapy, um she's just done four months of chemotherapy and now um the plasmatite the plasmatitoma um is not only uh in her brainstem, next to a brainstem, it's all down her spine and in her sacrum. So um she's now having to have a transplant, a stem transplant, um, which she will which she'll be having on um on Monday. Um and she'll be in hospital three weeks and from that point that's when the journey begins. That's when we are, you know, we're gonna be going through a journey. Because she's gonna be the best care, you know, at the Rome Mars and Sutton. Let me tell you, them guys are phenomenal, the way they've handled us and give my wife support, you know, big shout out to them, uh the United Heroes. Um but the real work is when she comes home from the hospital, that's when I that's when the caring role really steps to the forefront. And um and I'm gonna need some support and I'm already putting that in place, you know, while they're be making the calls, you know, um and the family can step in and support while I get that support as well. Uh and I think that's the message while I'm here today, is that I've done it all by myself in my head and and and just got on with it because trauma is running my is the driver on the bus and everything else. Um now people might think that's a little bit weird, like you're running a men's group and you've got trauma. It's a different type of trauma, you know, it's a it's a whole different kind of um angle, different angle to it. Because when I'm when I'm myself and I'm doing the things with the men and and and the support of the groups, that's when my focus is. So I'm concentrating on that and and being my authentic self. But when it comes to this, when you're at home behind closed doors and you're seeing the crying and the pain and the the suffering and the the words of I'm scared, um that's when you know I have to wear a different hat and uh step up. And carers need to do that. Carer support is there and I know it's there for me as well.

Practical Ways To Cope As A Carer

SPEAKER_02 12:55

So we're talking to Sean Orr from Men Share Listening Group, a super nice chap, uh a tough chap, I would say, helping lots of men in the community. But in this particular episode, we are talking about supporting loved ones through the cancer journey. So I I I guess just to wrap up, people listening to this, what top tips? Sean's top tips, there's no silver bullets. When I say top tips, it makes it sound like there's a silver bullet. It's a super sensitive topic. What top tips would you say to a carer listening to this?

SPEAKER_00 13:25

Uh I think my top tips are just be off just be yourself inauthentic, and and I think what's really important is to look in the mirror. And when you have that alone time, check in, you know, what's the impact on you right now? How are you feeling? What support do you need? And sometimes that inner voice, the overthinker, will say, just get on with it, don't worry about it, you can sort yourself out later. You don't realise that you're doing more damage. Um my top tips are to self-care. Talk to somebody, you know, uh talk to a therapist, uh, hypnotherapy is is fantastic for this kind of work. Uh counselling, you know, get coached, get you know, get mentored. If you can get that service where you can dispel all of it, get yourself into nature, sit in the car, and if go into a bit in nature where no one can hit see you, and you want to scream at the steering wheel and say an FU cancer and you know, dispel everything, get to a boxing gym, get out of the bag. Something where you need to release. Because you know, we all know this as carers, you know, we're we're like a kettle and the steam comes out of the other end, and we try and put the cap on it to keep the steam inside the kettle, and that is not healthy for anyone. And what I've read as well is people who don't deal with their trauma or deal with um what they're going through are ten times more likely to get the the disease what they're actually caring for that person for. Because, you know, the the ki you know, the toxins, the chemicals, you're not going to the gym, you're eating more, you're drinking more, you might be taking substances, you might be gambling more. As carers, we're human beings, and we'll find another advice to make ourselves feel better just because we don't want to think about that trauma. So my top tips are to be real, be honest, and get help. And you know what? And it is cliche, but it's okay to be okay. That means talk. Talk you know, I say strangers are the best people to talk to. Family and friends will tell you what you need to hear. Strangers will just hit see you and hear you. And that's how any m any women's men's children groups work because being all real and authentic is the is the healer. You know.

Local Support Across Sussex & Surrey

SPEAKER_02 15:47

Very good. And um, you know, I'm wishing Lisa all the best for the next for the next period. Um and it's really important this can creep up on you if you're in this situation caring for someone, this can creep up on you. So having that check-in with yourself, noticing this and getting the help and talking. Um just quickly mention some of the services. Obviously, we talked about the brilliant NHS and some of the services around but McMillan and others.

SPEAKER_00 16:14

Yeah, so um Macmillan um has been fantastic, you know, and they and they and they've outreached and they've sorted out finance you know, finances out with Pip and things like that, and um and and they've helped with um kind of support, holistic support. The auditory, which is at Crowley Hospital, has been fantastic. Um and there's also one over in Horsham as well, run by Mark.

SPEAKER_02 16:36

And what do they do?

Menshare Listening Group Details

SPEAKER_00 16:37

Uh so they offer like um kind of f complementary therapies. So they might offer massages or um headscarf wrapping, they offer Reiki, you know, they offer kind of free services, um, so people feel a little bit better and feel a bit kind of pampered. And and they offer it for the carers as well, not just for the people who are obviously going through the treatments. It's an olive tree, yeah. The olive tree, yeah, they're amazing. Yeah, they're very close to me, the olive tree, and uh uh they run a really fantastic organisation. For me, um Catherine's, you know, um is out there and it's an amazing hospice uh and they and they do get a lot of uh kind of fundraising. But what I will say is that the olive tree um deserve, I feel, uh a part of that shadow as well to be lots of fundraising for because what they do and what they've done for my wife is phenomenal, really is. Um carer support. If you're not connected to carer support, get in touch with them. They offer complimentary breaks um all around the country, you can have a two-night break as a carer. Um and I would say as well, for me personally, is local therapists, you know, people who can coach, people who can mentor, you know, that they are just as important as well. Um, and of course, any group what can help you, if it's a uh bowling club, if it's uh coming to a circle like ours where you can come and talk freely, or women's group, um, bingo, social, whatever it is, what takes your mind off that, um, they deserve a shout. And yeah, there's probably services I've not mentioned. They're the main ones I feel that have been really in important to us, and uh yeah, we're very grateful for that.

SPEAKER_02 18:18

And uh quickly with the other hat on men's share listening group, let's just do a quick update. Whereabouts are they meeting? So if you're a man going through this, definitely think about men's share listening group.

SPEAKER_00 18:29

Yeah, absolutely, yeah. And we do have men coming to us um who've been or been through it. So they're they're and when they're in my circle, I actually get some healing from it hearing what they say. So um yeah, so Mondays and Wednesdays at the Crawley Baptist Church and Crabtree Road, that's RH117HJ. Um Monday's seven to nine, and on Wednesdays half past four to half past six, and then seven to nine. Um we are on East Winstead on a Tuesday at the St. Swivans Parish Hall, which is behind the big church, again seven to nine. On the same evening on Tuesday, we're at the Hayward Heath um Presentation Hall, which is at Maryland, um, which is just based off the town centre. Uh, and also on Thursdays we're at Horsham, which is at the United Reform Church, which is just off the Springfield Road, again 7 to 9. All the circles are free, all the circles offer a safe place and confidentiality. Um and let me say this: if you come immediately when you start hearing the people, the other men checking in, it gives you a place to talk out your head. And we've had men talk about cancer. I've tried my eyes out some of the stories where men have lost their partners, and that's what hits me really hard when they say they've lost who they love. And that is where I fall into myself, you know, where I'm thinking, because the fear factor's always there, you know. Um, so so yeah, and if if I may, a big shout out to my wife, you know, um, absolute hero and warrior. Um I I can't really put into words, and my wife doesn't, I think my wife's like me, we don't take compliments, but let me tell you something, um, she is like a rock, and she's and she's so supportive of me. Um, and you know, she helps us help Sister Share Listen Group while she went through cancer. That tells you the kind of woman she is, and uh, I think she's made me a well she has made me a better person. Um, so lots of love to my wife.

SPEAKER_02 20:28

Thank you very much, Sean. A very heartfelt message of sharing, um, a very personal story, and uh from all of us, all the best for Lisa for the coming weeks. Thank you very much, Sean.

Final Messages And How To Respond

SPEAKER_00 20:41

Thanks. Yeah, thanks Clive for the opportunity and thanks to everyone for listening. I'm hoping that this may just help you in some way. Thank you.

SPEAKER_02 20:48

And if you want to get in touch, it's the Sussex and Surrey soapbox. We'd love to hear from you and your stories on this very sensitive topic. But hopefully, if you're listening to this, that's going to be helpful. Again, Sean, all the best and thank you very much.

SPEAKER_00 21:03

Thank you, Clive.

SPEAKER_01 21:05

Tell us what do you think? Leave a comment below or click on send a text. Thank you for listening to the Sussex and Surrey soapbox.