S1E4 - Neil on facing neuroendocrine cancer as a young person

Today, we hear Neil’s story. Neil (he/him) is a gay man living in Manchester, who was diagnosed with terminal neuroendocrine cancer.

This episode we discuss:
🌈 Navigating a rare cancer diagnosis
🌈 Facing a terminal diagnosis as a young person
🌈 The need for better mental health support in cancer care

Content warnings

This episode contains discussion of:

• Cancer
• Death (including death from cancer)
• Mental health challenges 
• Medical trauma
• LGBTQ+ identity and isolation in healthcare
• Palliative care
• Grief
• Sex

Glossary

Choroidal melanoma – https://www.nhs.uk/conditions/eye-cancer/
Neuroendocrine cancer – https://www.macmillan.org.uk/cancer-information-and-support/neuroendocrine-cancers
Spinal cord compression – https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/spinal-cord-compression
Palliative care – https://www.nhs.uk/conditions/end-of-life-care/what-it-involves-and-when-it-starts/
Glossary of LGBTIQ+ terms – https://outpatients.org.uk/wp-content/uploads/2024/03/V2-Provider-Pack-OP.pdf (Page 4)

Episode resources

Neuroendocrine Cancer UK – https://www.neuroendocrinecancer.org.uk/
Maggie’s – https://www.maggies.org/
OUTpatients: Sex & Cancer Info Hub – https://outpatients.org.uk/sex/

Support

If you’ve been affected by any of the issues mentioned in this week’s episode, here are some places you can reach out to:
Support for LGBTIQ+ people affected by cancer – https://outpatients.org.uk/support/
Maggie’s – https://www.maggies.org/
Macmillan Support Line – https://www.macmillan.org.uk/cancer-information-and-support/get-help/macmillan-support-line
Switchboard – https://switchboard.lgbt/

Credits

Created and produced by OUTpatients.
Edited by @CRTaudiotech.
Cover art by @SorrelMilne.

Check out our website: https://outpatients.org.uk/
Follow us on Instagram: @OUTpatientsUK
Follow us on TikTok: @OUTpatientsUK
Sign up to our newsletter: https://outpatients.us17.list-manage.com/

Transcript

SPEAKER_00 0:00

Welcome to Outspoken, a podcast by Outpatients, the UK's LGBT IQ cancer charity. Having cancer as an LGBT IQ person can be a very isolating experience, leaving you feeling like a minority within a minority. That's why every episode we're bringing you the story of a real LGBT IQ person who has or has had cancer, told in their own words. Today we hear Neil's story. Neil is a gay man living in Manchester, living with neuroendocrine cancer. He's going to be talking about the grief of facing a terminal diagnosis, the need for better mental health support, and the difficulties of facing a rare cancer, especially as a young LGBT IQ plus person. What's it like when you're finally living life as your full queer self, but a rare cancer diagnosis turns everything upside down? Please be aware, this episode discusses cancer, death, including death from cancer, mental health challenges, medical trauma, sex, palliative care, and grief.

SPEAKER_01 1:45

So I work-wise, um, I was working as a lecturer. Um, I taught counseling, um, which I loved because it was kind of preparing people. It was often lots of um people that had sent their kids off to uni and kind of thought that that was it, and then they would come to uni themselves. So it was quite nice to invest in them and and see them kind of go out and be counselors. And then on the side of that, I was also I had my own business. Um, being a counsellor, I had some private clients. Um, I had my own little counselling um room at home that I would see clients in as well as do it online, and then outside of that, um, social life. Um, I quite liked going into the gay village in Manchester. Um, and also um there's like a bookstore called um Social Refuge that we would go to and kind of hang out and have coffees and things like that. Um, so it was all kind of pretty go, go, go. I was often fighting off the exhaustion to keep going, but um, life was really quite vibrant and lots was happening. My aunt, um, who was quite a big um like parental role in my life, she got cancer when I was 15. But it, I guess from the outside perspective, I don't know how much I was shielded from her kind of experience, but it very much felt like she had some treatment, it didn't go great, and then she was in a comas for sort of five days and then she passed away. And it was cancer wasn't something, I guess, that was this big scary thing. It was sad and it was something that killed people, but it wasn't massively on my radar. Um, if anything, um, from a sexual health point of view, I think it was much more kind of health anxiety fixated on things like that, like HIV prevention and all the rest of it. So I think that's what was so shocking in a sense, because I know a lot of people sort of are worried about cancer, and I sort of feel like it wasn't the one that I was watching out for, but it was the big bad monster that was kind of hiding behind me all along. I had been having back pains on and off for I'd say about two, two and a half years, and I had been to the GP um on and off to kind of say, look, this is quite painful. Um, and I had the usual what you'd expect to look for in terms of you know, improve your diet, lose some weight, improve your core strength. Here's a referral to physio. I did that. That actually did seem to help for a while. Um, but I was progressively getting a bit worse. Um, but separate to that, I had caught, I don't know whether it was COVID or a virus, um, but I had all kinds of weird, wonderful symptoms like temperatures and feeling a bit dizzy, and um all of the symptoms one by one kind of disappeared. But one of them was a bit strange. It was uh like a vortex in my right eye. I could see like light folding into itself. It was like something from a video game. Um, and I ignored it for like an extra week, and then I thought I really need to go get this checked. So I went to my local kind of optometrist and I explained to them, and they said, Oh, yes, there is something going on there. Um, we need you to go to the iHospital, if that's okay, to just get it checked out. So off I went to iHospital in Manchester, and um they said that my retina might be detaching, but there was a bit of I don't know, uncertainty around that. And they said we need you to come back in a couple of days' time when the kind of experts are in to um figure out what's actually happening. So I went back to the hospital um and this lovely um doctor pulled me in and so said, Okay, so we don't think it's your retina detaching, um, but there is definitely something going on. Um, and she had quite a thick accent, and I guess at that point, my own shock plus her accent, kind of I was only picking out certain words, and the words that I heard were um related to cancer, and that was my first kind of I said, Whoa whoa whoa, are are we talking tumor here? Are we um and I think she was a little bit flustered because it wasn't necessarily her place, and she said, Oh, I'm I really don't want to get into that, but I'm gonna make a referral to Liverpool for you. Um, it could just be that it's inflammation, it could be that there's something else there. Um so I had a couple of weeks of going into work and joking with my colleagues and saying, either my eye has a bit of inflammation or I've got cancer. And there was a laugh of kind of that it couldn't possibly be that get over yourself, stop being so dramatic, Neil. And um, we all kind of were like, okay, off I go. So I went off to Liverpool. Um, and yeah, I guess the the shortened version of the story is they took me into a room and they said you have a rare type of eye cancer, um, a choroidal melanoma that um they identified visually because it was too small to biopsy and they could possibly damage the eye. Um, so I would need to have proton beam therapy. So have an operation on my eye to insert some metal markers, and then once it recovered from that, get this laser, I guess, fired at it. Um, so that was shocking in and of itself. I kind of came home and had a cry with my partner, with my best friend, with my family, like the idea that I had cancer in my eye, sort of thought of all places I'm in horror movies, that's the one place anything to do with the eyes was horrible. But but the the good news was the the treatment was 95% effective, and hopefully I would just go back to living a normal life. The biggest impact would be that I would maybe gradually lose sight in my right eye, and and that felt like a as like I guess an okay price to pay for having a normal life. So, in the meantime, I'd went back to my GP about the back pain and said, okay, so just because this diagnosis happened, can we please get me a scan now just to check that the back pain isn't related? Um, and I had that MRI scan and within four or five days was reading on the NHS app the results of that, and it was kind of saying I'd put it into Chat GPT and effectively told me that I had cancer of an unknown origin on all these different discs in my back. Um which I wanted to say was devastating, but I think at the time I was just in so much shock, it was unbelievable. It was like something that kind of happened on Netflix or somewhere else. Um and I went to GP, um, I had an appointment, and I think blessed, she was really empathic, but I could see the tears in her eyes, and I was sitting there going, but I'm okay. And and I could tell from her reaction that I wasn't meant to be okay, if that makes any sense. That um, and she sort of said, I don't know what, I don't know what's gonna happen next, but not out of a lack of knowledge, just in terms of to tell me exactly what to do. But she sort of said, Go home, rest, and someone will be in touch. And the next guess, I guess, step was being admitted to hospital. And I was admitted to hospital. I was told to basically have to lie flat, and that my spinal cord was at risk of um compression, and if that happened, I could permanently lose kind of all feeling from the waist down, um, and that was obviously terrifying in and of itself. Um, and I ended up in hospital for three weeks and they did all kinds of scans and tests, and eventually we also didn't know, I guess, what the cancer was, and so consultants were scared at the spread, but also didn't know what to tell me, or you know, whether I was gonna live for three weeks or whatever it was gonna be. Um, and then eventually they said it's this rare cancer called neuroendocrine cancer, um, and effectively then said that you're gonna need a referral to a specialist, and thankfully, one of the best specialists that we have is in the northwest of England, so weird way to luck out around like um rubbish cancer, but good to have a specialist. Um, and then the the kind of final bit was that although um my back wasn't at risk, thankfully, of imminent compression, um they found there was almost like a huge tumor in my left leg. So before I left hospital, I had to have an operation, have a steel rod inserted into my leg, and then spent the next kind of period of time in recovery from that before I could actually speak to the oncology team and start that whole kind of I guess cancer journey. Um, so it was all from that vibrant life and kind of lots going on to the brakes absolutely slammed on and suddenly everything had fallen apart. It was intense. Every scan said more cancer, and it was like, yeah, what do I do with this? How do I process this? How do I cope? Yeah, 68 weeks after I think the kind of initial this is what we think it is, to like let's start to talk about what that what the cancer means for your life and treatment and things like that. Once I initially was told that I had neuroenter in cancer, I started to Google. Um, and the the doctor I had a really good relationship with at this time, um, she kind of said, be careful with what you read online, but not from a it's gonna scare you, it's gonna sound much nicer, and yours is a bit different than what you're gonna read. So I think um that was a kind of an interesting take. Um, but I yeah, I started reading about this neuroendocrine cancer and how the you basically had to learn this whole new lexicon of terms because it it was unlike any other cancer in terms of there was staging, there was grading, there was typical or atypical, there was um the primary site that it came from. There were so many things that changed what it meant for patients, and I think that I guess the the message I really hear about I want to say normal cancers, but that's probably not the right way. More common cancers, that's probably a better way to put it. With more common cancers, is you know, you've got to trust your oncology team, and you know, you you focus on your health and they'll focus on the treatment. And I think my oncology team, I was really happy with how straightforward they are, or sorry, were and continue to be, but I think part of that was being really open about the fact that look, this is really rare, there are very few people that have your type of cancer and that kind of are presenting in this advanced state, um, and there are very few studies on any of this. So although we are experts on it, we don't know a lot at the same time, and we're almost gonna learn as much from you, and in terms of how you and your body react to this cancer and our treatments as you are going to take from us. So I think it was very strange to suddenly be in a position where not that I couldn't trust my oncologists, but whereas breast cancer, for example, might have a really staged pathway of, you know, we'll give you this, this is the percentage chance that this is gonna work, and these are the kind of known side effects. Mine was much more case of we're gonna throw stuff at the wall and see if anything sticks and just keep telling us what breaks along the way. Um, so I think that it's um it also meant from a treatment point of view that there's no agreed treatment path. So there, for example, my oncologist believes that it should be done this follow by this, follow by this. An oncologist in the south of England might say, actually, I think that it should be this follow by this, follow by this. And in the States and in Europe, they have another entirely different pathway, and also the types of treatments that they use because there's a lack of empirical knowledge around what works and what doesn't work. There's not enough people for those studies. So it was also been in this strange bubble of okay, there's some treatments that the NHS have approved that I've got access to, but I know there's other treatments out there that aren't approved, but other people can have success with. So it's um it's been a really strange headspace to be sat in and not as reassuring, I guess, as maybe some other cancers and their pathways could be. One of the charities, they have an amazing kind of resource for learning all about different things, and they have a group in Manchester that I was able to go along to, but I was the only one of where I was, of my age, of my specific type of cancer from the way things. Um, and so I did feel and in a way continue to feel very special, but not in the good way, kind of very isolated with what it is that I'm dealing with. And I guess in other charity groups, you know, when you go on the different support groups, there's the breast cancer, the prostate cancer, the the different specialist groups, and and it just mine doesn't exist. I don't fall into even some of them don't have like a rare cancer group, so there's not somewhere that you can kind of necessarily go for support. And I think that's with it as well. I guess it part of the the what's the best way to say this? Like the mental health struggle was that I think I had previously been really naive and quite black and white about cancer, and I kind of because of the world that I came from, you know, I taught my students, you know, when they wrote their essays, while they were allowed opinions, they had to find evidence to support it. You know, I was very much my first degree was in psychology, and it was entirely empirical. You're like almost we don't care what you think, we need you to find the verified peer-reviewed study that says that. So I think when I took that into my cancer journey of, but where are all the studies that say this is the treatment that should be used? It's like, oh, they really don't exist. And and suddenly having to be, and I guess I don't mean it in a derogatory term, but almost like a Facebook mum, you know, that suddenly was in these groups that I guess I previously never would have thought of joining, talking about all these different possible treatments and you know, people's individual experiences with things. Suddenly, this was becoming one of the only spaces to find information. And it just it upended my whole paradigm about how you're supposed to go about these things and and the places you should put your trust in, and the places that you should maybe avoid and are full of rubbish, and and ultimately that in itself was quite uh a weird headspace to have to battle with. So I guess in terms of mental health, I I think it it played into lots of parts of my cancer. So to begin with, with diagnosis. Um, I think because I had had anxiety and previously had issues with depression, I some of it manifests in health anxiety. So when it came to some of my symptoms, I would kind of go to my GP and say, look, I don't know if this is psychosomatic, I don't know if this is a real thing. I was really trying to level with them, but I think in a sense it gave an out to yet all in your head, you know, this is anxiety, this is you're you're too stressed at work because I had that busy work-life, social life, you know, I was spinning probably too many plates, like most of us do. It was easy to blame it on, you know, you're just you need to slow down a bit, you need to take care of yourself. And I think that through that, I I really started to doubt my own sense of my body. Excuse me, I started to feel like you know, I'm all in my head. And what I've learned through the having the cancer is and not in an egotistical way, but I actually have quite a good sense in my body, and very few times is it are any of the symptoms not real. And now the irony is when I can get the blood tests or I can get checked very easily, if I feel off, it does tend to show up as something. So um, I think that it it taught me about again the lack of understanding of mental health and how sometimes it can be scapegoated. Um, and our I think sometimes a better understanding would help clinicians to understand how mental health impacts us and that health anxiety and psychosomatic things can happen, but not to just take that as the immediate explanation, um, and to to dig into things a bit further if if someone does have previous mental health kind of history. I think that so much of it has had to come through self-advocacy though, and that has been very different than the medical support. So I think one of the things that really struck me was as soon as I was led out of hospital, um, the palliative care team came to visit, and the lady that came to visit was really lovely, and she went through and she Asked different questions about my physical health and adaptions to the home. And there was one question about, you know, how's your mental health? And I kind of laughed and said, absolutely horrific. And blessed, she tilted her head and did the sound and looked at me. And then moved on to the next question. And when she gave me the little pamphlet of the services that could be provided, it was a bit like, you know, if my pain gets out of control, there's someone to contact to up the pain meds or to review them. If I need to get around more, need more adaptions, then there's the physiotherapy team that, and basically, even nutrition, there was everything other than any mental health support whatsoever. That was kind of up to me to contact some charities or to do whatever. So I think that's when the the search began began, and I found places like Outpatients and Neurendocrine that had peer support groups that were both good to go to, but also strange because again, I was had this rare cancer that other people didn't relate to, and went from I guess I wasn't going through the staging process where I was maybe having operations, or I was straight to palliative care, I was straight to end-of-life diagnosis, knowing that the this isn't going to get better. But we've we can give you a rough estimate of how long you might live, but we can't, again, the lack of research evidence, if you die quicker or you massively exceed it, it won't surprise us on either side. So, um, from peer support, then as well, I got kind of individual counselling with different organizations. Um, and again, while that was great, because of funding, and I totally understand most kind of can only offer sort of five or six sessions. And when you've gone through the type of experience that I'm guessing that a lot of cancer patients have gone through, you're just kind of starting to do some of that work around sort of session five and six, and it's time to wrap up, and then all the best, good luck with it. Um, and I think again, in terms of I have a monthly check-in and with my oncology team, I get my bloods done, and they sit down with me and they ask me about, you know, how's the month been? What have my symptoms been? But if I mention anything about mental health, it's just kind of we'll make a referral to the psych oncology team and and we'll give you another six sessions of counseling. Um and I think it's just very I guess the the package, if I could put it that way, is really lacking around understanding people's the amount of mental health struggles that people will go through. Um, and I know that I guess I can only speak about my experience, and I know some people really don't want to talk about it, they don't want that mental health support. Um, I think as well, there was a bit of kind of that toxic masculinity in terms of people looked at me and was like, oh, there's this like 37-year-old bloke, he's not gonna want to engage with this mental health stuff. Um, so I almost had to sort of ask and say, no, no, no, can I please, yes, please do make the referral to the mental health team for me? Like, please do um put me on that list to speak to someone because I I I mean, obviously I'm a massive advocate for it. I feel like everyone could use some form of it. Um, but it's it's really strange to navigate, and I guess, you know, again where outpatients have been really good, like the session that we just had with that was set up with the death duo to talk about these kind of how to talk about grieving the life that you used to have, how to talk about grieving your identity, your queer identity, what you used to be, what may never be again. It's like a revelation of like this is it, this is the this is part of the puzzle. But it's I guess it's taken what a year and a few months to to find that, and it's only been kind of almost accidental through the the the sessions that that were set up by yourselves. Um so I guess I don't I almost want to say the support's great and I'm really appreciative of it. Um, but I guess I wish there was an easier way for people to get access without having to fight so hard or search so hard or try so many different things that as it was presented in the same way that physical health stuff was presented, and there were things like death doolas and and counselors and all kinds of services available for people that wanted to take it up before cancer and before the the medication and everything else. I could easily read through you know reams and reams of information on different websites and click through links and like follow the rabbit hole of each website. But I've even found that you know, when it comes to different charities and what they offer, because they're so passionate about what they offer, there are reams of videos and paragraphs and downloadables, and and sometimes even that in itself, you just sort of look and go, Oh, I really want the support, but this is not in a format that is easy for I almost could do with someone sitting with me talking through this. Um, so I think that it's it's even the way that it's presented is kind of potentially overwhelming. And I can see why people just kind of close the tab and go, okay, that's that's a future me problem. Like I'm I'm not that's not helping. When you go through um your consent form for chemotherapy, they talk through kind of the side effects and lifestyle factors and things, and one of the things they touch on is um kind of um, I don't even know what it's under because I was gonna say contraceptive, but I think it's under like some very strange title that kind of is to do with sex, but we're we're far too British to say the word sex. Um, and it was basically just to kind of say, yeah, just to just wear condoms. And I remember asking, I was like, so what just while I'm having my chemo cycles, and I guess the the the comeback was yeah, but just I guess just keep wearing them forever. And it was like, okay, that's different. And I think then I spoke to one of the charities and kind of had said I was a bit overwhelmed at the time, and maybe it didn't feel like the right thing to challenge the oncologist at that point because so much was going on. But can I can I ask more about this, you know, and and especially in terms of like being a gay man, is are we is this specifically to do with kind of heteronormative relationships and babies and impacts on I don't know, something happening to the fetus? And and I guess the answers were kind of oh, we've never been asked that before, or I really don't know. And um it it just kind of was like, Oh, okay. So that's although lovely, well-meaning people the end of the kind of conversations, and um I guess that the whole I don't know that being a gay man in some of those spaces that I it just felt like back to that joke of like being the only guy in the village, you know. When I when I would join support groups and things, it would be me and my little rainbow flag, and everybody else would be talking about, I guess, their lives. And I I absolutely know that LGBTQ plus people can live very kind of settled and similar heteronormative lives, but mine really wasn't. Mine was kind of a life of I definitely wasn't like a party kid out, sort of drinking all the time and things like that, but it very much was around kind of alternative relationships and um about exploring what queer identity is. And um, I suddenly felt again like I had to diminish myself within these spaces because it was very apparent who they were designed for. And while I I never felt unwelcome in the spaces, and everyone was very well-meaning, it just was strange taking a step back. I think um it it felt like stepping out of the zone that I'd been in and my little queer bubble into this bubble that was I get so I've moved from Northern Ireland to Manchester, and it felt similar. It felt like a sort of a mental move back into a society that wasn't as understanding and progressive, and you couldn't just kind of be who you wanted and nobody cared from a nice perspective. Um so um it's been strange navigating that and kind of again outpatience, probably being the only place where I can show up with all of myself. I can bring myself entirely. Where the other places, I guess, I bring versions of myself or parts of myself that I know won't be upsetting, I won't challenge things too much, or won't take up too much space to explain to people. I think it comes back to that idea of things being joined up or there being some kind of hub that links to a whole different type of thing because I think the there's so many different elements. You know, there is being a younger person with cancer, there's being a younger gay man with cancer, there's kind of being someone with a rare type of cancer, and I fully appreciate that there can't be a perfectly tailored kind of here's your group of people that are exactly like you, so you can all validate each other. Um, but I think that I guess it's having the different options and it being linked up in some way that is kind of I don't know, it feels like it could be straightforward because I guess that especially with I guess what I call cancer overwhelm, that the not being able to do the normal tasks, that if I'm gonna make up a role of like a mental health advocate, you know, that sits down with you and you know, within say the NHS it says, you know, I I can't begin to imagine the overwhelm that you're going through right now. And you're probably gonna need a lot of different things at different kinds of spaces. And so all I'd like to do today is is kind of get to know you a little bit better and then signpost you towards different things. So, in terms of younger people, here's the charities or here's the organizations, in terms of queer identity, here's the kind of things that we think of with that, in terms of rare cancers, here's things like that, and you know, maybe something to touch base again down the line to see how what's worked, what's not worked, to have a little bit of a review. And it doesn't feel like that would be a huge ask, because I guess I'm thinking that person doesn't need to be a trained counselor or psychologist, that person just is someone that has done some research into what's out there and um the different things that people might need, and taking away some of that burden. Because I guess if I if I put it in terms of pain, you know, that the um pain team are incredible. They appreciate that. Like I'm a lay person, I have no idea when it comes to what pain medication is out there, what's gonna work. I just have to tell them what hurts, and they tell me that what they're gonna try and which is a nerve pain, and which is a this, you know, and they're amazing. And and we try it and we we mess with the levels in terms of side effects, and and that's a month began monthly and is now three-monthly. The idea of having someone else that could do that from a mental health perspective, you know, and that's a 20-minute conversation. And I I feel like from a mental health perspective, it could also be a 20-minute conversation, it doesn't need to be this huge thing, but how helpful it would be to have that kind of role built in that you know checks in with you soon after diagnosis, to you know, and if someone doesn't want to use any of it, then absolutely fine, but they have that option, whereas someone that does need it, it doesn't take a long time to find it and to have to kind of struggle in the in-between times. I think that the way a lot of the appointments work with my hospital is that I go in, you spend about an hour or so getting bloods done, and then you go to clinic, and it's kind of you just although there's a time, like most things, it it is anywhere within like an hour, an hour and a half of that, you have quite an intense conversation, especially in my position. I've I'm really lucky my partner goes with me to every single appointment. Um, but some of them have been, you know, especially when we've talked about prognosis, you know, one of them in particular sticks in my head. It was kind of if the tumor that's by my spinal cord sort of grows towards it anymore and starts to compress it, I potentially have three months to live from that point. If the treatment doesn't work, I've got six months to live. And if the treatment does work, I've potentially got up to two years to live. And there is that element of again, I'm asking for that information, and I'm really appreciative that the oncologists are being that straightforward. But you have those conversations, you ask all the clinical questions about treatment, or you know, and then you go to pharmacy and you collect your medications, and then it feels like you're just spat out of the hospital because that's it, and you kind of at least I found and my partner have found is like what what am I meant to do with that? Do I now just go home and sit on my couch and watch some Netflix and pretend that I didn't just get told that kind of horrific, overwhelming. And I think again, there isn't that place to be able to put that because I think I've I remember in particular coming out of one of them coming home and just being really restless and pacing backwards and forwards. And I was like, I need to talk to someone, I've no idea what I need to say, but it it can't just the conversation can't just end there. Um, and so I tried one of the the hotlines, and again, while it was a really well-meaning person and they were kind, I could tell that a lot of the focus is on practical needs. Again, if if do you need any help with money? Do you need any help with AIDS around the house? And and I was kind of trying to say, I just think I need someone to listen to how traumatic this is just being. And there would be a little bit of listening, followed by, you know, you know, we're always here, and and there was that idea of we're always here to listen, just not me, you know, get the next. And and I could tell that no disrespect to that that person that listened, but I think it was this is too much. You know, I I needed a space that I don't even know what it was. I don't even know that it still exists, but I I guess again, if if I was able to have this wish list of things that I feel like after you have those conversations with the clinical team, there almost should be a debrief person at the end of the day, you know, that kind of checks in with you and says, So that's a lot that's happened for you today. You know, where is your head at? How are you feeling? Would you like to talk a bit about it? Um, and I know again that some people are likely to go, nope, I just want to go home, I just want a brew, or I just want to, and equally, I think there would be people like myself that want to just talk about it. And again, it doesn't need to be this huge thing, but maybe even just a 20, 30-minute debrief of saying, Oh my goodness, I've just been told I potentially have three months to live if this this thing happens, and and where do I put that? And the same with my partner, you know, where where do we put that? And when I relay this information to my family, because a lot of times my family and friends know when I'm going for my oncology appointments and they wish me the best. And post the appointment, they want to know how it's gone, you know, what was said, where are we up to, and when I'm delivering that factual information to them as well, like what do they do? And it's just again this feeling of I don't know, maybe I'm I'm searching for this utopia where everything is supported and held, but it feels like a huge ball to drop that there isn't any holding space. There's there's nowhere to really go to with that. And you know, while again, peer support is great and you know, specific therapy sessions are great, they tend to be scheduled in, you know, and they're not on the schedule of when it happens for you in that moment. I guess it almost feels like a crisis line, like, but but you're not in crisis that anything imminently bad's gonna happen. It just is a sense of, but if someone will just listen to me and and see me where I am right now, and um the same for my partner or for my family, that would that would be really, really helpful. And Maggies have, I guess, have been fantastic. In I think there's a little bit of them being nine to five and the clinic also being that thing. So if your clinic appointment finishes at half four, there's not the the time to go and drop in and have, but if it has happened, it's exactly that. It's lovely to be able to go and sit with one of their specialist nurses. And I'm I've I've got to know one over a year, um, and she is incredible, but again, it's the availability at the right time sometimes of that. I guess in terms of even therapy, you know that I have I am lucky that I do have resources to be able to have private therapy at times, but it still tends to need, like you know, I was being a therapist myself. You generally schedule a week ahead of time, and it's that one hour slot. I can't just go at seven o'clock at night. Like I'm almost, I need this crisis space, I need a session right now. So even that doesn't feel like it can meet that need, it's it's the like a something else. I think having a diagnosis so young, it it it kind of feels like life had just hit its stride. And I think I I really struggled emotionally because I think that I struggled through my twenties. As I'd mentioned before, I I had kind of bites of depression and anxiety. And I think like a lot of people spent a lot of time worrying about what everybody thought about me and kind of had that spotlight syndrome where I f I felt like people were way more interested in me than than the reality that they were, and I had kind of gone through my own. Kind of therapy journey of being a client and learning loads of techniques to feel better about myself to um almost as well build myself for who I was. I when I when you do your therapy training to become a therapist, there's a lot of sort of figuring out who you are, your values, and and I kind of one of the essays is who am I? And it's a big kind of oh yikes. I don't know who knows who they are. Um, but through that I'd I'd realized that I'd kind of constructed a version of myself that took elements of what I thought everybody wanted me to be, like what my parents had hoped for me, what my colleagues wanted of me, what even my neighbors thought of me to be. And I would, I felt very much like a chameleon that I would show the version of myself that they wanted to see. And through that, had almost caused loads of mental health issues from compartmentalizing myself and not realizing who I was. So through all of that work, I guess I landed in my 30s and I suddenly was experiencing life as myself, you know, and and part of my sort of identity as a gay man, but almost like identifying and embracing more of that queer identity of embracing the feminine parts of me and accepting parts of myself that I hadn't accepted before, and just being kind of unapologetically into what I was into. You know, if I liked building Lego and playing video games and being goofy, then that was okay. And and through doing that, as lots of like the therapy stuff in books say, like you will attract your tribe. And so I had attracted these amazing weirdos that kind of again, we'd started to form our chosen family, and I'd find this partner as well who was fantastic because for the first time, I guess I felt like someone really got me, and I really got them. And we started planning for our future, you know, and all these amazing trips that we were gonna go on, and kind of the the different places that we were gonna live. And I guess from a career point of view, I had grafted a lot, you know, it was hard work I'd been in teaching for like 16 years by this point, and I was heading up this department in this kind of topic that I was so passionate about, and it was a university that I'd grown it from the start. You know, it was really things were starting to pay off, and then bam, just this kind of diagnosis of cancer that instantly, you know, it wasn't a case of okay, so we're gonna cut this bit out and we'll give you a bit of chemo, and fingers crossed, you'll live the rest of your life and it won't come back. Instead, it was a we do have some treatment options, but we need you to know that you're not going to make it out of this one that this is it, that you know we're initial diagnosis was 12 to 18 months, and I guess right now I'm probably at like month 14 or month 15 kind of post-that. So it's constantly having the specter of death and kind of I don't know, planning. I've you know, planned my funeral in my 30s, which you sort of don't expect to have to do. Maybe you know, you've retired and you've had your golden years, and you're kind of thinking, oh, let's get this done so that the kids kind of don't have to stress about this, or whoever it may be, not at this point in life. Um, and even just from uh an emotional point of view, again, like having to um what's the right way to put this? Like having to deal with my parents, but that sounds quite cold, but understand that this is a huge thing that's devastated my life, and I need things from them. But because of how much this is impacting them, trying to have empathy for how on earth do you deal with the fact that you get told that your child is likely going to die before you do, you know, and and it's just been so everything's upside down, it feels like nothing makes sense, and I guess I I know that I'm absolutely not the only person in this position, and and there are people young, a lot younger than I that get in this position as well. But I think I guess I can only speak from my own lived experience, but it just felt so cruel, and I guess as well, even from a world point of view of being a good person or doing good things, I sort of felt a sense of, oh come on, you know, like I at 21 I trained to be a teacher, I've worked with so many young people and I've helped them to like kind of um visualize their future and and step up to get there. And then as a therapist, working with clients to help them either step back from the brink of wanting to kind of not be here anymore or work through stuff. And I've always been really compliant in life as well. I've done the right thing and kind of jumped through the hoops, and and I think it felt like, oh wow, it really doesn't matter. It's kind of this karmic, cosmic fairness doesn't necessarily really exist. This can strike anybody, and um it you just gotta deal with it. And I think that that's been really difficult to hold on to. And I guess I'm getting into some of the support groups and stuff as well, it'd be really hard because I remember going to one of my first neurendocrine support groups, um, and while the people were so welcoming and warm, the average age was probably sort of mid-60s in that room because it was people and they openly would talk about how they'd had their lives, that had their kids, their kids now had grandkids that while none of them had a death wish, if if they did die, then I guess they felt like they'd had a good life, that had a good innings. And I guess I was sat there initially really resentful, thinking I have nothing in common with you. I have had none of the experiences. I I will at the best live half of the life that you've had, and this feels so unfair. So, and I guess it was a type of resentment and a type of anger and rage that I'd never experienced in my life before. I was generally a really kind of I could be fiery and passionate, but it was in a different way. It was never in this kind of horrible, almost hateful kind of way. So it was seeing new sides of myself I didn't particularly like. But I think because I felt so othered and so different in my experience that I was so outside of the norm that no one could relate. Um, and I did, I found places and there were spaces, and like that that's definitely changed over time. But I think initially I guess there was a real feeling of isolation, and I have huge empathy for anyone diagnosed with cancer, but specifically for younger people diagnosed with cancer, because the world right now, anyway, isn't particularly designed to deal with it, and you there aren't a lot of spaces that are created for that, uh for those circumstances. It's so shocking in a sense. Like I darkly joked with my therapist. It if it was a series on Netflix, we were like in series two or series three, and things, these plot lines had all been set up, and the character arcs were starting to be developed, and then suddenly the budget got cut, and it just had this really weird ending that nobody understood. And it felt like being in that liminal space, that place of, you know, yes, people die young, and it's really tragic, you know, with car accidents or overdoses or these horrible things that happen. But I guess it's like an immediate end, and the person themselves isn't dealing with it, it's often the family that are sort of having spaces for the fallout. And I think there's lots of grief spaces if you've lost someone, but that place of but where's the grief space for I've been told I'm dying? I I accept it and I know it's happening, but where where do I go until that happens? Should I just sit in the corner and wither? Or I and yeah, it's it's very strange.

SPEAKER_00 53:44

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