Dawn Taylor| 23/10/2023

Transcript

Dawn Taylor



I am your host, Dawn Taylor. And today, I get to go talk to the lovely Sam. So, Sam is. What is Sam? Sam, by the way, has the greatest accent on the planet. Sam Alexandra Rose is a writer from Northamptonshire, UK. I'm really trying to read that, right, but it's an amazing name. Um, she is a three-time cancer survivor that has a rare genetic condition. And a PhD student researching the connection between writing creative or creative writing, sorry, and cancer survivorship, which in and of itself is crazy. Her poetry has and her prose have been published in over 70 literary magazines and anthologies, and her memoir, Gut Feelings: Coping with Cancer and Living with Lynch Syndrome was released in January 2021. So, if you want to find any of these things or access to Sam, please check out our show notes and I'll mention that again at the end. But, check out our show notes because you want to follow her. She works as a patient and public involvement manager for a bowel disease research charity, and she is here today to open up and to talk about a topic we wish people talked about and honestly, something that both of us have dealt with and are dealing with is - but we should be dead. And how do you live in that situation? So, Sam, welcome to the show.

Sam Alexandra Rose

Hi, Thanks for having me.

Dawn Taylor

You are so welcome. So what do you wish people talked about? 

Sam Alexandra Rose

I really wish that people talked more about the realities of cancer survivorship and living with the genetic condition and how that makes us, just the ways that we try to cope with that reality. Um, in terms of, as you said, how long am I going to be here for? Um, being just so, um. Uh, what's the word? I've lost my words already! Being so. Oh, sorry. The word is totally gone. 

Dawn Taylor

That's okay.

Sam Alexandra Rose

Ironically, the word word was impulsive. Yeah. And impatient about everything. And, yeah, just trying to kind of merge the two worlds of, like, the normal everyday world and the medical world that a lot of people don't know about.

Dawn Taylor

Oh, 100%. So my husband and I often joke that we live in a town called Realistic Denial because we still have to live in reality of the fact that we have conditions that could kill us tomorrow, that we are living on borrowed time, all of these things. But, we also have to live in this weird state called denial because we still have to be human and we still have to get out of bed every day and go to work and function and live and not live in that identity. So, let's start at the beginning for you. So, three-time cancer survivor. Talk to us about that. How old were you? When did you get diagnosed? What is it you were diagnosed with? You know, all the fun.

Sam Alexandra Rose

Okay. So I was first diagnosed with bowel cancer or colon cancer at the age of 22 back in 2010. And after I was diagnosed with bowel cancer, my consultant was like, “Well, you know, why has this happened to you so young?” We need to do some genetic testing on me, on my parents to find out what was going on. And it turned out that my parents have a genetic condition called Lynch Syndrome, which actually isn't very rare. But the thing is that a lot of people, apparently around 95% of people don't actually know that they have it, which is crazy to think that people are wandering around with this gene. Essentially, it increases your cancer risk for various types of cancer. Mostly it's colon cancer and it can increase your risk of colon cancer to up to 80%.

Dawn Taylor

Holy cow. That is a big number. 

Sam Alexandra Rose

It is. 

Dawn Taylor

And the majority of people have no idea.

Sam Alexandra Rose

No, no. A lot of people probably haven't even heard of it. Even those that have it, probably.

Dawn Taylor

So okay, so really quick, because I'm like, “What?” I could have this and I know about it. How do you even get tested for this?

Sam Alexandra Rose

So if your family has a high number of instances of people with bowel cancer or different other types of cancer, so, it's bowel cancer, um, like gynecological cancers like womb cancer and some others as well. It kind of depends on which genes are involved. Um, but I, actually, uh, when I went one step further and so what happened to me was I inherited lynch syndrome from both of my parents, which is a really rare thing to do. Um, and actually, they estimate that only 1 in 1,000,000 people have this condition. So what it is, is you inherit Lynch syndrome from both of your parents. So, it's like the odds of getting two people with Lynch syndrome together to begin with, who then have a kid who then has the bad luck of inheriting Lynch syndrome, not just from one parent, because you could potentially not inherit it from any of the parents like my sister did. She doesn't have Lynch syndrome or what I have at all. Um, but yeah, so what I ended up with was something called CMRD or constitutional mismatch repair deficiency, which is a bit of a mouthful. Um, but as you can imagine, if Lynch syndrome increases your cancer risk, then having it from both parents increases your cancer risk even further. And that's, that also involves things like brain cancer and brain tumors. And we found out actually that my brother also had CMRD, but we didn't realize at the time. So he died when he was 16. I was one year old back in 1989, so we know now that that was because of CMRD as well. 

Dawn Taylor

Wow. Okay. There are so much we could unpack there. I can't imagine being your parents. And knowing that genetically, this is something that they gave you. And I don't mean that in a blame or anything like that, but I know my husband and myself like both of us having conditions that were genetic. That was one of our reasons. And when we realized we couldn't have kids on our own, we didn't want to do a surrogate. We didn't want to use our DNA because we were like, “I would never want to give this to somebody.” Right? And so, like, there's so many. Okay. I don't know where you're willing to go with this, but there's so many, so many directions. 

Sam Alexandra Rose

I’ll go anywhere. 

Dawn Taylor

So, okay, so let's start there. Right off the bat, like, how have your parents dealt with the fact? That they know that it was like their genetics that has not caused this, but do you know what I mean? Yeah. How did they deal with that?

Sam Alexandra Rose

I mean, we don't really talk about that side of it too much as a family. But, I do know that they do feel some kind of guilt, which of course isn't rational or anything, you know, because nobody can help what they pass on. But yeah, I think they do feel like a bit of guilt over that. But it's not, it's not really something that we talk about or dwell on too much. I think we just, we take things in our stride. Whatever happens, happens, you know, we just get on with it. Really? 

Dawn Taylor

Yeah. And so for your sister who doesn't have this. Does she live in fear of it at all? Is there a way she could develop it at some point? Is she at higher risk or she's just healthy and good? 

Sam Alexandra Rose

Dhe's just fine, which is I mean, she's got two children as well, which is great because it means that she didn't get it and therefore she didn't pass it on to my niece and nephew as well. 

Dawn Taylor

Yeah, which is wild. So what has your journey looked like having Lynch syndrome? You got cancer very young, right? Incredibly young. And what has your journey continued to look like? 

Sam Alexandra Rose

Yeah, so I had that first cancer. I had my entire colon removed, which meant I had a stoma. I had, you know, like a colostomy bag for five months, just a temporary one. And then what they can do is always think that the science of it is quite cool. They can do a reversal in some cases. So, what they did is they kind of put the stoma kind of back in essentially, and they make a makeshift large intestine out of a part of your small intestine, and that learns to like absorb fluid in the way that a large intestine would, which I think is pretty, pretty clever. So, yeah, it's like essentially plumbing, plumbing me back together. So I've got, I'm kind of normal again. Or it's normal. Normal as I can be. Um, so, so, yeah. So that was in 2010 and then 2011 had the reversal, later in 2011, we had the genetic testing. And then that meant that we, what I had to have all kinds of tests every year because I'm so much higher risk. So, it's things like something called a flexible sigmoidoscopy, which is similar to a colonoscopy. But, because I don't have a colon anymore, obviously it doesn't go quite that far up. So, it's like a mini colonoscopy, really. Um, I have a gastro escapee every year, which is the camera down the throat and into the stomach and looking at the small bowel. Um, I had a CT scan once a year for just, like five years. I think that was just, like, related to surgery more than anything else, and a capsule endoscopy I have at the moment. And these, that sort of came later. But, the capsule endoscopy is when you swallow like a little camera, um, like, like a little sort of tablet and you wear a recording device that speaks to it and the camera travels down your throat and into your stomach and small bowel and eventually, like during the day, you like, poop it out. Basically. they don't want it back. They're very clear they don't want it back.

Dawn Taylor

That is really funny. 

Dawn Taylor

So, yeah, it's like a less invasive way to have a look at, like, your small bowel and kind of the parts that the colon can't can't find. Um. So I had several years of all of these tests and kind of the fear of recurrence that comes with it and all of that sort of stuff. And then in 2018, I had my annual routine gastroscopy. Around the same time, I had an MRI to look at a completely unrelated problem. I was getting recurring abscesses, um, down below to put it politely. So, I had an MRI. Um, but when they looked at the MRI, they sort of, we never heard about the abscesses again, basically because what they saw was a problem. I can't exactly remember how they described it, but they said there was a problem with the lining of my womb. And all of this kind of happened at the same time. And the gastrostomy that I went to, they said that they found a polyp. They marked it as urgent, a polyp, I should say. It's just like a little sort of growth, like a tumor type thing that may or may not be cancerous. Some polyps are just just benign. Um, but they said that they found it and they sent it off for testing marked urgent. So, you can already tell. Well, that's not a very good sign. Um, we went on a family holiday, came back to loads of, like, voicemail messages from the hospital. Can you call us? And essentially I got two. I kind of got two cancer diagnoses within two days of each other, which, as you can imagine, was just absolutely horrendous.

Dawn Taylor

I can't even imagine. 

Sam Alexandra Rose

Yeah, it was awful. So I had to meet my consultant at the hospital and they said, go meet him on the ward because he isn't in his office where he would normally be because it's not part of his sort of consulting hours which again, bad sign. Um, and he said, “Yeah, you have duodenal cancer.” So the name is a small part of the small bowel. Um, and I was kind of expecting it because they said, you know, the gastrostomy we've taken something with marked it as urgent for testing. So I was weirdly calm about it. Um, yeah, because I was sort of expecting it. What wasn't expecting was the next day at my gynecology appointment for them to say, “You have definitely precancerous and possibly cancerous cells in your womb.” And then they later confirmed that it was cancer. And then they were very surprised that I was relieved that I was that it was early stage cancer because they said, you see the pre-cancer or it's early cancer. And in my head I was thinking, “But what if they're wrong? What if it's actually stage three? Stage four?” You know, your mind just, like, goes into overdrive. Um, so when they said to me, it's early stage cancer, I was like, “Okay, good.” I'm not good. But, you know, they're like, “Wait a sec. What’s wrong with you?” 

Dawn Taylor

“That reaction's not what we were expecting.” 

Sam Alexandra Rose

Yeah, but it's like, well, whether it's precancerous or it's cancerous, you have to do something about it anyway, So, what difference does it make? So, yeah. And so after that, we, my partner and I went to a fertility consultant to talk about options, and they said that you could have surgery now, like have everything removed, you know, womb, ovaries, because there was a risk of ovarian cancer as well. Uh, do that, do all that now and get it done or there's this other treatment that may or may not work. Um, kind of remember the details of it now. And he, you might want to do this or you might want to hold off surgery if you want to try and, like, get pregnant first or if you want, because we don't have we didn't have biological children. Yeah, well, they said that you could freeze your eggs. Um, but in order to do that, they would be stimulating the ovaries, which could also stimulate the lining of the womb, which could in turn cause the cancer to grow. So, me and my partner kind of immediately both agreed. Well, we don't want to do any of that, you know? Yes, we kind of envisaged ourselves having children at some point. Um, but we were on the same page that we both didn't want to take a risk, so we just said, “Yeah, okay, total hysterectomy. Just do it now. Get rid of everything.” So that's what we ended up doing in September 2018. And then they said, “Once you've recovered from your hysterectomy, we will do a surgery to deal with the duodenal cancer.” And this was all quite a long time coming because that summer was very much two teams kind of fighting over me and trying to decide what they were going to do with me because I was quite an unusual case. And so, in November they did the Whipple surgery, which was removal of the head of the pancreas, the duodenal, because that's where the cancer was, the bile duct and the gallbladder. So, it's quite a big operation. They know they normally do it for pancreatic cancer and it was about an eight-hour surgery. Two hours of that was just, like, dealing with adhesions, you know, when, like, organs get, like, stuck together, they have to prise them apart before they can do anything with them. And that was two days, I think, in the high dependency unit at the hospital, sort of similar to the ICU and then another seven days in a regular ward. So, yeah, really difficult to recover from that. In November. That will be five years ago and I will hopefully be five years cancer-free if nothing happens between now and then. 

Dawn Taylor

Okay, for starters. Holy shit. Okay, I'm just going to say it because everyone's thinking it. To deal with all of this at such a young age and then dealing with these massive decisions, cancers that are notm like it's very, it's not common to recover from some of these cancers, right? But then in the middle of that, you're fighting for your own life. You're fighting with, like, “Can I have kids? Can I not have kids?” Making that decision to make that final that you couldn't have both children, right? Like there's so many parts and pieces of this. so many parts. So, before we dive into that, what are the risks or the chances of you getting cancer again? 

Sam Alexandra Rose

I don't really know. And I try not to think about it too much. Some things you just don't want to Google, I think.

Dawn Taylor

Oh, I can. I can totally see that. I do want to say for anyone who is like, “Okay, how rare is this Lynch syndrome?” What, like, this is crazy. Um, according to the Cleveland Clinic in this state for cancer, Lynch syndrome occurs in approximately 1 in 279 individuals in the United States. So, just think about that number for a second. I'm amazed. I'm amazed that more people aren't being tested for this. But I also know I'm go,ing to talk to my doctor and ask if I can be tested for this, because that's just wild. So, now let's move forward a few years. You're recovering from three cancers in a very short period of time. And now it's time to live again, and some of you and I had talked about in our initial conversation before recording this today was that feeling of the life you thought you were going to have died. And I think anyone who's had any sort of massive health issue, anyone who's had anything in their life not going according to plan, understands very much what that feels like. But, when you're faced with death, it's very different, right? So when you're in a position where you could die in, you're literally fighting for your life with medical treatments. It's hard to live after. It can be incredibly difficult to actually live after. Let's dive into that. 

Sam Alexandra Rose

I think it's difficult both in the long term and in the short term as well, because you have the long term of maybe life not turning out how you thought it would so for example, not being able to have biological children. But then also you have in the short term just trying to live day to day, especially when, okay, so the cancer may be gone. All three of them, but there's still the yearly testing that I have to have, all those different tests and and more have been added as well because of the CMRD. So I also have now a brain and full body MRI. So ,every six months I have a brain MRI and every year I have a full body MRI as well. And it's just that living, trying to live day to day when you get an appointment letter through the door saying “Come to see us for an MRI, come to see us for this capsule endoscopy, and also you have to drink bowel prep, which is completely disgusting.”

If you haven't had anything like this in Canada, it's awful. Yeah, it's horrible. And that's like a three day affair, right? So you have the bowel prep that you have to drink the day before and then you go to the appointment on the day. And then if you have sedation for your procedure, then you can't, like, drive for 24 hours afterwards. It is basically a three day thing. I'm just remembering when I had one at the beginning of this year, I did the bowel prep and I really wasn't feeling well and I was thinking bowel prep doesn't really usually make me feel this bad. Woke up the next morning. I feel absolutely awful. Gotta go to the hospital, like as soon as I wake up, basically, did a COVID test. I had COVID for the first time and I drank the bowel prep for no reason.

Dawn Taylor

Sorry, I shouldn't laugh, but having been there, I'm like, “Oh my gosh, everybody wants to bowel prep for no reason.” No one.

Sam Alexandra Rose

No. I can laugh about it now, but yeah, just, just remembering that. Yeah, it's this whole thing of, you know, tests may crop up at any time and say you're just, you're at work, you're just at your desk doing your job, and then you have a phone call, you know, come in, make an appointment or you're waiting for results. And it's just always at the back of your mind. So it's, yeah, the short term and the long term, I think.

Dawn Taylor

Absolutely. Have you struggled with letting people close to you? I know one of my struggles was I was so terrified that people would know me or like me or love me, and then I would die. Or that I was too much for people because of health issues, right? Where it was like, you know what, I don't want anyone else to have to be part of this. I don't want anyone else to have to be in the hospital or worrying about me or driving me for tests or surgeries or any of those things. And it, I don't know if this is the correct wording on it, but it almost became like a weapon for me over the years of just, like, holding people at an arm's length. Right, because it did. It really felt like if I let you too close, this is just going to get hurt. And then either you're going to reject me and abandon me down the road or you're going to lose me or something's going to happen and I'm going to get hurt. And that makes no sense. And I don't want to do that. 

Sam Alexandra Rose

I think I'm really lucky in that my partner and I have been together for a really long time. So we met in 2006 at university, so we'd been together about four years before my first cancer diagnosis. We're still together now, and he's, he's brilliant. Um, but I mean, the thing that upsets me the most, if I think about it too much, is like, what if something does happen again and it's the worst outcome? And then I have to leave him. And that's just the thought of him having to manage with me not being here. That is the most upsetting thing. 

Dawn Taylor

Has it changed? So my partner and I also, my husband and I have been together since way before the aneurysm, right? And he also is brilliant and stuck it out. You and I both chose very well. But what about with friends? 

Sam Alexandra Rose

Yeah, it's. It's complicated, I think. Um. Sometimes, I think that people were my friends maybe a little bit more while I was unwell. And then once you're kind of okay and you know, well, they think that you're okay and recovered, then there's that drop in attention. And especially after my first diagnosis and my surgery, I spent a few years just feeling so sad about everything that had happened, afraid of what was going to happen next and I guess I really still needed people several years later to check on me and say, “Are you, you know, emotionally okay?” because I was not. But people don't know that, which I guess is what spurs me on to do things like come here and talk to you because people need to know that people who have had cancer or other illnesses, it takes its emotional toll and you've got to check in on people.

Dawn Taylor

Yeah. And I think a lot of the emotional toll isn't immediate. I know for myself it always hits later, right? So I'll recover from whatever I'm going through, say, I'm feeling amazing in April or May typically it's, like, four months later. My cycle is four months and it's like four months later is when I'm like, blah. And I feel like that's when I fall apart and that's when I really, really struggle. And yeah, people that haven't, you know, okay, so this is something interesting because I've had this conversation recently with some friends is if you haven't been through it, yay, glad you haven't dealt with really traumatic health issues, right? But you also just don't understand, like, you don't get it and there's no way you can, but also from the side of the person who's dealing with a health issue. We need to step up and go “This is what I need from you. But part of that is also can you provide that?” Right? Like, do you have the capacity? Do you have the capacity to provide what it is I need in that arena, right? And I've had friends over the years that are phenomenal at the like, “Hey, I need you to call me on like every Friday and be like “Are you alive or are you good?” Right? And they're like “Done.” They'll put it in their calendars and like, that works for them and other people. It's like, “Hey. Can you not ever talk to me about my health? Can every conversation we have nothing to do with my health? Because I really just need to not think about it right now.” And they'll be like, “Yep, absolutely.” To people that go, “Hey. You're not well.” I know when I was doing some really, really heavy treatments about two years ago, I was in Edmonton a lot and people didn't know I was here. There were a few core people in my life that knew I was here, and it was very interesting how one of those, there was one night he called me and he arrives and I was like, “I'm just done now. Like I'm just on my way home.” And he's like, “Come to my house.” And I was like, “No, I don't have the energy.” And he's like, “No.” He's like “We're going to feed you. We're going to tuck you on the couch on a blanket, and you get to just lay there and just not be alone. But we'll ignore you.” And I don't know if I've ever told them how much that meant to me. Right, that it was like, “No, you don't have to show up in any way. You can show up in your pajamas. You can lay there and cry if you need to. Like, we're just going to make sure you're okay.” He's like, “We will take care of you. Like, we will drive you back to your hotel when you're done and you're ready to not be around people. But I just don't want you to be alone tonight.” And I showed up and was like, “Thank you”. There were no expectations of me. I didn't have to choose that. I wanted to eat. I didn't have to, you know, make any decisions. And I did. I literally laid on his couch under a blanket while him and his wife did their thing and their son was tootling around and, you know, I just laid there and watched whatever was on the TV and it felt so safe and I don't know about you, but we often hide how bad it is, and we hide where we're at with our health. So that we never feel like we're too much for people. 

Sam Alexandra Rose

Yeah. And yeah, it's difficult, isn't it? Communicating about health, especially like with people that are close to us, but also people who are that little bit further away. I'm thinking about just like when a colleague says like, “Hi, how are you?” Which should be a completely innocent question, you know, there would be days where like either I'm thinking I don't have the energy to, um, to say, “Yes, I'm fine.” because I'm not fine. I just want to shout at you all the things that are wrong, but at the same time, also I don't have the energy to not lie and to, you know, go into all all of the detail as well. So yeah, it manifests in lots of different ways. But I had a similar friend actually, who let me just go to his house and sort of crashed there because I was at work. It was in 2018, so around the time of um, my second and third diagnoses and I was at work and I got like a phone call or some news or something that upset me. And I talked to my manager and she was like, “Do you want to go home?” And I said, “Yeah.” So instead of going home, I went to, um, or went to a supermarket to pick up some lunch. And then I went to my friend's house and he only lived about 15 minutes away. And he was like, “Yeah, sure, come over. I'm going to a job interview soon, but you can just hang at my house.” So I went over to his house. I told him a little bit about what was happening. Um, we hung out for a bit and then he went to his job interview and I just sat alone in his house, which, thinking about it now, was just a little bit weird. But I played on his guitar a little bit. I just sort of tried to have a nap on the couch and just waited for him to come home. And then we went to the pub and had a drink.

Dawn Taylor

Right? it is funny like talking about it and even that night, like it was probably weird that he invited me over to do that, but it felt so good, right? So closing off this area of this because then I want to dive into something more fun in this whole situation or quirky about both of us. For anyone listening who has a friend with a health issue. What do you recommend? What do you recommend for the significant others or the friends of someone who is in a situation like yours or a situation like mine, or dealing with a health issue where there is a lot of like, future fear, current fear, right? And also just like so much unknown, What do you recommend for them on how to support?

Sam Alexandra Rose

I think the problem with communication is that sometimes there's a lot of guessing and maybe it's a good idea to just ask the person, like, “Do you want to talk about this? Do you want advice on this? Do you want to be distracted? And should we just talk about something else or do something else?” Um. Especially when like, it's in the thick of it, so like just after surgery or something, when somebody's recovering for something or going through treatment, then, like, sending messages again, this is something that that my friend, the same friend did, sending messages and explicitly saying, “You don't have to reply to this. There's no expectation from my end for you to contribute. I'm just telling you about my day or I'm just checking in. Hope you're okay.” Um, yeah, I think that was really nice. And it's along the similar lines, isn't it? Yeah, Just just come and chill at my house. It's like the text equivalent of that.

Dawn Taylor

Oh, totally. And I think the one thing I would add to it is I had people actually get upset with me for not staying in good enough contact with them. And telling them what was going on and including them in things and incorporating them into that side of my world at that point. And that was really hard, and I remember, after when someone was like, “I heard you were here nonstop for medical treatments.” And I said, “Yeah, I was.” And. It was really interesting. The comment that came out of their mouth shouldn't have shocked me, but it did. They were like, “And you didn't even call me?” And I remember just I was like, “No, no, I didn't.” and they're like, “Well, I thought we were friends.”

And I was like, “I'm pretty sure that I was spending my time in medical treatments because my body was shutting down and I felt like I was dying and I didn't have any capacity for people.” Right? I had no capacity for people. And I think that changes on where we draw our energy from, right? As an introvert, it decreased my capacity. As an extrovert. I might increase someone's capacity to be like, I need people more, right? But I think, like, I know a lot of people really struggled with that with me because I've had conversations with people about it where I go internal, I cocoon. So, when I'm going through something, you will stop hearing from me. When I'm going through something, I will not reach out. I will not ask for help. I'm not going to tell you I'm struggling. Like, that's not my natural go to, my natural go to is I just curl completely inward and go, “Okay, now I have to take care of me and I don't actually care who's outside of that.“ Right? And it's not. It's not a rejection of the other person, right? It's not a rejection of you. It's me just trying to protect me in that moment. And so to understand as a friend or a family member, like what is your capacity? What can you handle? And if you don't have the capacity to send out a daily update on how you're doing, right? That's okay. It's okay that you don't have that capacity and I'm not going to ask it of you. 

Sam Alexandra Rose

But there's too many people to update anyway on a regular basis. 

Dawn Taylor

Oh, my goodness. There were too many. And, you know, it was interesting the people that were like, “Hey. What do you need right now?” And I'd be like, “Can you just check in on me, like, once a week? Just, like, send a prayer for me? Can you like?” You know, things like that. But I also had a friend that I remember one day there was like this crazy long day of IVs. Like, I was there for almost eight hours. And a friend called and she's like, “Can I just come in like, sit with you?” And I was like, “Yes. Yes you can.” And she just, like, crack jokes. And we laughed and we talked and like, I cried. And she literally just, like, held my hand. And that was the most beautiful thing ever. Because she was like, “Hey, this is what I want to do. Are you okay with that?” 

Sam Alexandra Rose

And that was when somebody comes with an idea of how to to help rather than relying on you

Dawn Taylor

Yeah. “What do you need?” And you're like, “I don't know.”

Sam Alexandra Rose

Exactly.

Dawn Taylor

And my answer often was like, “Coffee. I need a coffee.” And they’d laugh. “Like, that's it? That's all you need?” I was like, “I don't know what else to tell you.” So, now let's fast forward. How has having a diagnosis like that cancer three times knowing you're such at a high risk, right? And all of these things in these shifts. How has it shifted your everyday life? 

Sam Alexandra Rose

So, people say don't let cancer define you and all of that kind of stuff. I've kind of gone the other way. Yeah, I don't really like that sort of advice anyway for lots of different reasons. Um, I don't like, kind of being told that I might be doing it wrong somehow. As if there's a right and wrong way to do cancer.

To do cancer recovery. 

Dawn Taylor

Oh, come on. There's a book, isn't there, that tells you how to do it perfectly? I'm kidding. I'm kidding. 

Sam Alexandra Rose

Um, so. Well, in early 2019, after I'd recovered as I was recovering from my Whipple surgery, and I was just trying to fill life up with everything but the kitchen sink, I decided that I'd quite like to do a PhD. And so I'm currently in I'm about to start year five of six of my part time PhD. It is long. It's good. I'm enjoying it. Um, but yeah, so my PhD is in creative writing, so I'm writing poetry. It started off being about my cancer experiences, but also it kind of morphed into, well, I'm a writer. I've always been a writer, so naturally I've been writing about cancer since about 2012 when I sort of started to get to grips with everything that had happened. So, about 2020 when I was doing this, PhD came to the realization, I've been writing about cancer for about eight years. Actually, maybe I don't want to do quite so much of that anymore. But then the question becomes, “Well, who else am I apart from being a cancer survivor?” And that became a difficult question to answer, but that's that kind of writing about identity and trying to explore that. My PhD is not just a PhD anymore. Because of that, it's a whole like exploration of myself. So,, that's kind of the main thing, really. I mean, plus talking to people like this on podcasts and blogging and writing books. And it's quite funny since in the time between we had this initial conversation about me coming on and talking to you and today for me coming on and talking to you, I decided I wanted to write another book. I wrote another book and it's coming out on the 2nd of September because I work very fast now.

Dawn Taylor

You do! That's incredible. Okay. So we will put a link. I'm going to get you to send me the link for that book for where people could find it. And, we are 100% going to put that in the show notes. So, does it do you think it speeds you up, slows you down? Does it make you try different things? Like, I'm often kind of spontaneous, right? Because I'm like, “But I should be dead.” So today is borrowed time and I'm gonna have fun. 

Sam Alexandra Rose

That's it. And it wasn't until recently because and it's kind of what my second book is about, is kind of going from denial to acceptance because it has taken me a long time to accept that I have CMRD because just a couple of years ago, I wouldn't even be saying the words. I'd be just trying not to think about it. But yes. So, it's been a long time trying to come to terms with all of it and it's definitely made me more spontaneous, I think. Um, I mean, there's a few things that I've done that I probably wouldn't have done if I hadn't had cancer. And just kind of knowing, um, about comedy in the statistics because the average person with CMD gets their first cancer diagnosis at seven and a half years old.

Dawn Taylor

Wow. 

Sam Alexandra Rose

So a lot of children unfortunately don't make it because a lot of it is brain tumors. And, you know, there's a high sort of recurrence and things like that. So it is kind of thinking, well. I could say I think I'll do such and such one day. Oh, yeah, I'd like to do that. Maybe one day isn't really in my vocabulary anymore. Because what if. What is one day? That's nothing, You know, that doesn't really mean anything. What if one day never comes? What about today? So that's why I've done things like, um, been in a hot air balloon. I did a fire walk one year. That was quite cool. 

Dawn Taylor

Um, very cool. I've done it. It's amazing. I recommend it. I highly recommend it to everyone. Do a fire walk. At some point in your life, 

Sam Alexandra Rose

Did you always have like, a really kind of motivational, like, speech and kind of team building thing before you did it?

Dawn Taylor

Yeah.

Sam Alexandra Rose

That's cool. 

Dawn Taylor

Oh, yeah. It's crazy. It is so cool.

Sam Alexandra Rose

Yeah, I love that. I got the idea from watching The Office because it's my favorite TV show, and I just. I watched them doing a fire walk in one episode. I was like, “I want to do that. I'm gonna do that.” And that was it. And I found somewhere that was doing it. I was like, “Yeah, that's it. I'm doing it.”

Dawn Taylor

That is awesome. So, one last thing, and then I will let you go. I know it's very late at night there right now. You talked earlier, you mentioned earlier about the whole identity thing and I'm sure you see this all the time is people have a diagnosis and then they own it. It's like they wear it like a cape and it's who they are and what they are, not what happened to them and what's created who they are. And I will admit I've been guilty of that a lot in my life myself, right? You talked about the fact that you don't like when people say that, right? To not own that and not identify as that. Can you explain that a little bit? What are your thoughts on that?

Sam Alexandra Rose

Yeah, I mean, that definitely sounds like me, to be honest. You know, somebody who's just sort of taken it and kind of took ownership of it and I guess maybe made it who I am, but I guess in a positive way. And I suppose if you do that, then it's fine. I mean, essentially there's no doing things right or wrong at the end of the day as they're all just desperately trying to get by as best we can. Um, yeah. I don't really like when people say, “Oh, don't let it define you.” Um, because it kind of makes it sound like I don't have control or I do have control. I think it makes it sound like I do have control over the situation. And sometimes with cancer, you just don't. And yeah, again, I don't want to be told that I'm doing it wrong. I think that I have harnessed it in a positive way, but I do often think what would life be like if it wasn't for that? You know, what would I be doing right now? Because I work for a bowel disease charity, and that came about because of my patient experiences. So, that wouldn't have happened if I hadn't have had cancer, I wouldn't be, I might doing my PhD now, but it wouldn't it wouldn't be in my cancer experiences. It would be, I have no idea. Something else. So. And it's the thing as well. When people say, “Oh, you're so brave.” or “You inspire me.” “I think you're amazing.” All of this sort of stuff. And it's like I haven't done anything inspirational. If you're just talking about my illness, I've done nothing. I've done what I was told to do by the doctors.I've just existed. Don't compliment me for existing, but actually I think that it's what you do with it. It's like, yeah, okay. I don't think that I'm brave or anything for having gone through an illness experience. What I do think is brave is when I and other people take our illness experience and we talk about it, we write about it, we try to make other people feel better. By sharing our experiences, we create something beautiful out of it. We create anything, anything that we're happy with. Writing, drawing, crafting, whatever it is, and just try to spin something positive out of it. I think that those are things that people should be commended for. You get no credit for living. That's a quote from, sorry, but I can't remember who it is. It was a writer who was talking about writing memoir, and she was just saying, “You can't just write, um, your, your story kind of from beginning to end as it happened. It's like, what is the actual story within that? What's the angle? What did you take from it? You know, you don't get any credit for for living the story. You get credit for what you do with it afterwards.” I guess.

Dawn Taylor

I love that so much. Sorry. It hit me. It hit me in the feels when you said that in a good way of often when people are like, I don't know how you've survived, I don't know how you've done what you've done to even be here. I'm like, “I just did. I just kept living.” Right? What I'm so proud of is how hard I have fought to be who I am. How I've turned and how you've turned these things that we've been through into something beautiful, into something that can inspire someone or help somebody or be something amazing. And thank you for that. Thank you for that, because I think it's so true. I think it's so true. You know, I think of this every day. And when you and I first had our initial conversation. It's like, man, someone who's been through so much and you've turned it around. You didn't just curl up and die, right? Like you didn't take that as your identity as like, you're the cancer girl, and now that's it. And you've curled up and died within that and just suffered within that. And it's been a pity thing or a victim thing. You took that and you wrote about it. You're turning it into, you know, your job and your career and your future and all of those things. And I just want to say thank you. Thank you for sharing that with the rest of us. 

Sam Alexandra Rose

Oh, thanks for giving me the opportunity to, yeah, come on. It's always really good to talk to somebody who just gets this kind of thing.

Dawn Taylor

Oh, more than I care to admit. I probably talked too much in today's episode is what I'll get told. And that's okay. Honestly, like, I love the conversation that we just had and how we both get it. We both just get it and don't know we're part of this weird club we don't want to be part of. And that's okay. That's okay because we're doing cool things with it. So, I want to thank you again so much like so, so much, Sam, for hanging out today. Thank you, listeners, for being here. And if you are owning your identity, if you are owning something that's happened in your life, it's not about doing it right or wrong. It's not about any of that. It's what are you going to do with it? How are you going to use it? It could be a gift or it could be a curse. It's a double edged sword either way. So what are you going to do with it? So if you want to find Miss Sam, check out the show notes located at TheTaylorWay.ca, and you can find a link for her new book. Oh, my goodness. I'm so excited. I will be ordering it. And for all of her other stuff. Find where she's published, read her poetry, support her. I know that it's always very appreciated when you guys connect with our guests. Join us again in two weeks for another fun topic, or hard topic? I mean, that's what the podcast is about. But honestly, share this episode to someone you know who has dealt with cancer, has dealt with a health issue that's really felt like they've lost their identity through it so that they can feel seen and heard and understood. Subscribe now on Apple, Spotify or wherever you listen to your podcasts and if you love the show, please leave a rating and review. Thank you so much, guys. See you in a couple of weeks.