Paul

Age at interview: 46
Outline:

Paul, age 46, was diagnosed with a familial polyposis syndrome in his early thirties when he went in for an unrelated check-up. Paul had his colon removed and later, in his mid-thirties, had his stomach removed after multiple polyps were identified. Paul still experiences some “scanziety” around his preventive care, but goes in for regular sigmoidoscopies and endoscopies. He lives with his beloved wife and children, as well as several pets, in the East. 

Background:

Paul works as a manager for a chemical plant and lives in a rural town in the East with his wife, kids, and an array of pets.

Cancer-Related Experience: Cancer

Type of Inherited Risk: A polyposis syndrome

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Paul discovered that cancer runs in his family back when we was in his late teens and a close family member was diagnosed. He didn’t pay much attention to his own potential risk, however, until he was in his early thirties and had a work-related physical during which his doctor initiated a conversation around family history. His doctor then recommended a colonoscopy, and he was advised to have his entire colon removed immediately. Following this surgery, Paul had a temporary ileostomy bag; he remembers this period as “four of the longest months of my entire life.”

Paul hoped, after his colectomy, to “never…have surgery again” because it “was awful.” However, an endoscopy revealed that his “stomach was carpeted” with polyps. These polyps were initially benign, so some of his clinicians suggested he do nothing, as they weren’t bothering him, while others recommended removing his stomach prophylactically. This period of uncertainty lasted some time, but Paul eventually decided “the risk was high enough” and moved forward with getting a gastrectomy. The procedure revealed cancer that was “very early stages,” so Paul feels certain his decision to move forward was “the right move.” In hindsight, Paul’s colectomy felt like a big change, which he now notes was a “tiny lifestyle change” compared to the way his life changed after his gastrectomy.

Paul says that over time, things have gotten better for him physically. Now that several years have passed since his procedures, “there are frequent stretches of the day where I forget about it.” However, Paul still experiences what he refers to as “scanziety,” which for him means “every time I have a routine test, I’m convinced I’m dying.” Despite this fear, Paul still gets regular sigmoidoscopies and endoscopies, as well as thyroid ultrasounds. Though thyroid cancer is rare in individuals with a polyposis syndrome, Paul notes “well, rare is kind of what I do.” Paul wondered for a long time if he had been diagnosed earlier if he would have needed less radical surgeries, but has “since stopped beating himself up about that.” Paul has “very supportive people” in his life, which has made all the difference.

Paul experienced difficulties navigating the medical system at first. This taught him “that you have to be your own advocate” and that “if something doesn’t feel right, you’re the only person who knows that.” Though things were “very dark initially” Paul now says, “it’s surprising what you can get used to.” Paul believes that the best way to get through these difficult times is to focus on being “knowledgeable about it” so that you are the one “who makes the decisions.” Paul believes in the power of “listening to people who have had” similar experiences. He himself engages with people in support groups to learn from others and share his experiences so people know what they “might be able to expect.” Additionally, being able speak “freely” to a counselor and leaning on his wife for support were particularly helpful. Paul wants people to know it is “important to be on top of it” but remember that “you can’t spend your entire life worrying” so focus on “what makes you happy.”

 

 

 

At first Paul refuses testing because he is young and healthy.

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At first Paul refuses testing because he is young and healthy.

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You know, I was in my teens, so I was invulnerable. I did not have to get checked out for anything. I felt fine.

 

Paul says when it comes to having a rare condition, being special is not always great.

Paul says when it comes to having a rare condition, being special is not always great.

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My condition is considered rare, in that less than 7,000 people in the US are affected by it, which is a pretty small number. I mean, there are plenty of people who need to have their stomachs removed for various other reasons. Most of the people I see online are complications from bariatric surgery or the, is it CDH1?

Right.

So that’s mostly what I see.

Yep.

So even within the subset of people who have to have gastrectomies, I still don't see myself reflected very much in that.  So yeah there’s this idea that being special is not always great. There are some times when it's nice to be special, and there are sometimes when you'd like to be less special. So, and that's also another reason for having to be your own advocate, is that there's not a lot of information available for my condition. Because few enough people are affected by it, but then even fewer people also develop stomach issues. So there's much less information about that. So yeah, and I think you and I talked about earlier-- even speaking to medical professionals, when I explain to them what I have and what I've had done, they're usually kind of taken aback.

 

Paul says his syndrome is so rare, treatments are not available like they are for common diseases.

Paul says his syndrome is so rare, treatments are not available like they are for common diseases.

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I guess maybe I would try to get more a little bit more specifics on what to expect-- like, what realistically, what further complications, what areas should I focus more on being worried about, you know, as far as I would worry about anything that hasn't made itself known to be worried about. But what areas-- because I know that there are some other areas that the that the syndrome can affect. But, you know, should I have my thyroid scanned once a year? Yeah, I mean, it's considered to be a rare complication. But again, to me, what does that mean? The whole condition is rare. So the word tends to lose its meaning. It's like a semiotic association-- if you say it enough, it loses its meaning. So what does what does ‘”are” mean to me? You know. So I guess, in that aspect, I would-- that would be interesting to talk about. Because even these doctors, they're doing their best with the information they have, but with so few cases to work with, it's difficult to know. You have somebody who's diabetic-- well, OK. You're type 1 or type 2. This is what happens, these are the treatments that are available. There's many treatments available, many different things you can do. You know. There are insulin pumps, blood sugar monitors, lots of different types of insulin. There's many different things you can do. With this condition, unfortunately, there's just not enough-- not enough people affected by it. And also, the conditions that don't affect a lot of people also don't get the money for research that other things might get. Which is understandable. You’re going to research the things that affect the most people.
Right.
So I mean, that’s under-- I don't begrudge that. I don't feel like I'm being slighted in any way. But, you know, it's a fact that, so yeah.

 

Paul is always anxious before screening tests, and has a special label for the feeling.

Paul is always anxious before screening tests, and has a special label for the feeling.

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And somebody said that they had "scanziety." Which is, well, I think they had spelled it "scan anxiety," but I thought that was inelegant, so I shortened it to "scanziety." And the first time you have what for most people is a routine test, and they come back and say, “oh, you have to have this major organ removed, and it's going to impact your life, you know, for the rest of your life.” Every time you have any sort of routine test, your first thought is, “what are they going to take out or, you know, how is this going to affect me?”
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Yeah. Every time I have a routine test, I'm convinced I'm dying, or there's going to be some really bad news, and there's going to be another surgery.

 

Paul goes for screening as recommended by his doctors.

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Paul goes for screening as recommended by his doctors.

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So, yeah, recently, it's been yearly.
Right.
And it will continue to be yearly. Again, I follow the advice of the doctors, because this is what they-- it's not just that they’re gastro doctors, but they specialize in genetic bowel cancer. So whatever schedule they feel like we should be doing is what we'll do.

 

Paul talks about what happened when his doctors gave him conflicting advice.

Paul talks about what happened when his doctors gave him conflicting advice.

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The issue with that practice and with the surgeon-- and the surgeon was great, he was he was an amazing surgeon-- but there were a lot of communication issues. And that initially, with the information he had, he was like, “yes. OK. Let's go with this.” But then, you know, like any surgeon, he wanted his own people to do tests. So I had some tests done with his people. And then he had changed his mind and was like, “well, I don't really think we need to do this.” And so he looked up some information. And then I saw my gastro doctors again, and they were like, “no, you really should have this done.” And then I speak to the surgeon, and he's frustrated. And he's like, “well, I thought we talked about this, and this is maybe not the best way for you to go.” So it was kind of-- it ended up with, “well, it's your decision,” from both ends. Because, again, there just wasn't enough information. And even though both teams-- the surgical team and the and the gastro team-- were both very good, they just-- nobody had enough information to say, “yes, let's pull the trigger on this.” So my wife and I just eventually took all the information that we had and made the decision.
How long was that period between the identification of the stomach polyps and the surgery? It sounds like it was a while.
Yes. I want to say it was at least a year. It might have been closer to 2. So somewhere between-- again, I said, my conception of time is very is hazy at best, but it was it was between a year and two years of just going around and around and around. And again, it was it was nobody's fault.
Right.
Nobody to be the one to say, “don't have the surgery,” and then I develop cancer. And nobody wanted to be the one to say, “you should have the surgery,” and only to find out, “well, you didn't really need it.” And I completely understand that. And that was the position that I was in also. I mean, I don't want to have such a drastic surgery if I don't need to. But I also don't want to not be proactive, and then find out later that that was the wrong decision.
Yeah.
So yeah. And again, it goes back to being to being your own advocate. Because there were there were two medical teams that were highly knowledgeable, and very good, and communicated very well, but just disagreed. And it kind of put me in the middle. And it’s but on the plus side, it does force you to become knowledgeable about it. Because, you know, again, you have to be the one who makes the decision. And I know that other people have run into issues with letting a surgeon or their doctor tell them what the course of action is, and then agreeing to it and doing it without becoming knowledgeable about it. That’s just as dangerous.
Right.
So regardless of what a doctor tells you, I mean, you have to, obviously, weight that information heavily, because that's what they're educated and trained to do. But, you know, every case is unique, and so you have to become knowledgeable enough to assist in that decision.

 

Paul carefully considers the possible adverse effects of having surgeries to remove parts of his digestive tract, but decides he values staying alive above all else.

Paul carefully considers the possible adverse effects of having surgeries to remove parts of his digestive tract, but decides he values staying alive above all else.

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One of the things that my first surgeon said that struck me, he went through all the—this from the colectomy—he went through all of the potential issues that could come up from the surgery, from the surgery itself, and any side effects, and issues that might crop up. And, you know, some of them were regular stuff. You might get an infection during the surgery, you might need blood, whatever. One of them was where he was operating there was a possibility of becoming impotent. Which struck me as, wow, that's a pretty significant side effect. So I said, “OK, what would be the consequences? Now, I know the consequences of having surgery, what would be the consequences of not having the surgery?” And he said, “oh, that's easy, you'll get cancer and die.” So, wow! OK. So let's—let’s go ahead and do it then, because I don't like that.
Right. Yeah.
And then, when they first started talking about gastrectomy, many years ago before they decided the polyps in my stomach were benign, my thought was “I'll just let it kill me. I'm not having another surgery.” And then when they said, “well, I think you're you might have to have your stomach out,” I was like, “OK, cool. Let's do it.” Because you can be cavalier about it, but I have decided, also, having survived the first couple of surgeries, and I’ve decided that I would pretty much just like to live forever. So I was like, “OK, cool. Sign me up. Let's have the surgery. Let's do what we need to do.”

 

Paul says his insurance company didn’t want to cover his prophylactic surgery.

Paul says his insurance company didn’t want to cover his prophylactic surgery.

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And if they-- every once in a while, they'll balk at covering something. But I think it boils down to a communication issue. Because my situation is a bit unique, in that I've had to have some procedures done that could be considered not medically necessary, even though they were. But again, there's having something done prophylactically that can be a problem for an insurance company. “Why are you having your stomach removed? You’re not having, you know, you don't have cancer.”
Right.
It’s like, “but I could.”

 

Paul appreciates his surgeon’s ability to adapt as new information emerges.

Paul appreciates his surgeon’s ability to adapt as new information emerges.

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But that's one of the things that I liked about him, is that he had a strong recommendation that I don't do it.
Right.
But then, after I had some more tests done, and he did some more information, and he spoke to those doctors, and spoke to me, and then he said, “well, OK. This is probably something we should do.” So. And I think that it's the difference between confidence and arrogance. Arrogance is, “I have made this decision, and that that is the decision.” Confidence is, “you know, I've made this decision, but then I got new information and, you know, I have adjusted my opinion.” And that's one of the things that I liked about him was that, you know, he not so much could admit when he was wrong, but he could take new information and adjust his opinion accordingly. And I think he did a great job.

 

Paul says he had a lot of conversation back and forth with both his surgeon and his gastro doctors, who didn’t always agree, when deciding whether to have his stomach removed.

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Paul says he had a lot of conversation back and forth with both his surgeon and his gastro doctors, who didn’t always agree, when deciding whether to have his stomach removed.

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The issue with that practice and with the surgeon-- and the surgeon was great, he was he was an amazing surgeon-- but there were a lot of communication issues. And that initially, with the information he had, he was like, “yes. OK. Let's go with this.” But then, you know, like any surgeon, he wanted his own people to do tests. So I had some tests done with his people. And then he had changed his mind and was like, “well, I don't really think we need to do this.” And so he looked up some information. And then I saw my gastro doctors again, and they were like, “no, you really should have this done.” And then I speak to the surgeon, and he's frustrated. And he's like, “well, I thought we talked about this, and this is maybe not the best way for you to go.” So it was kind of-- it ended up with, “well, it's your decision,” from both ends. Because, again, there just wasn't enough information. And even though both teams-- the surgical team and the and the gastro team-- were both very good, they just-- nobody had enough information to say, “yes, let's pull the trigger on this.” So my wife and I just eventually took all the information that we had and made the decision.
How long was that period between the identification of the stomach polyps and the surgery? It sounds like it was a while.
Yes. I want to say it was at least a year. It might have been closer to 2. So somewhere between-- again, I said, my conception of time is very is hazy at best, but it was it was between a year and two years of just going around and around and around. And again, it was it was nobody's fault.
Right.
Nobody to be the one to say, “don't have the surgery,” and then I develop cancer. And nobody wanted to be the one to say, “you should have the surgery,” and only to find out, “well, you didn't really need it.” And I completely understand that. And that was the position that I was in also. I mean, I don't want to have such a drastic surgery if I don't need to. But I also don't want to not be proactive, and then find out later that that was the wrong decision.
Yeah.
So yeah. And again, it goes back to being to being your own advocate. Because there were there were two medical teams that were highly knowledgeable, and very good, and communicated very well, but just disagreed. And it kind of put me in the middle. And it’s but on the plus side, it does force you to become knowledgeable about it. Because, you know, again, you have to be the one who makes the decision.

 

Paul’s mother told him about his increased risk when he was a young adult, but he says he couldn’t absorb what she was saying at that time.

Paul’s mother told him about his increased risk when he was a young adult, but he says he couldn’t absorb what she was saying at that time.

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Well the actual beginning of the story is my mother being diagnosed and telling all of us kids that it’s a familial issue and that we should all get checked out...I did not. But to my credit, I was late teens and I was not interested in listening to anything that my mother had to say. And, you know, I was in my teens, so I was invulnerable. I did not have to get checked out for anything. I felt fine. And so flash forward many years later, and I was doing a pre-employment physical for this job I had gotten. It was pretty good job, and I was excited about it. And they did some blood work and told me that I was severely anemic. And so I needed to address that before they could clear me to come to work. So I went to see a doctor about it. And he took a family history, and was horrified that I was, you know, in my early 30s and had not been checked out. Because, apparently, I learned much later on that if you don't get diagnosed and get treated with familial polyposis, that people tend to be dead of colon cancer by 45.
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This-- I think this took place during a time when, when things were a little tumultuous. I do remember being at the hospital when my mother came out of surgery. And that was very difficult for me, because, you know, for all the issues that we had, my mother was always a very strong person.
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So they weren’t a lot of help. So my mother did everything herself. So it was very difficult to see her in that that kind of position of helplessness. So I remember, that was kind of tough.

 

Paul says Lynch syndrome is part of his personality.

Paul says Lynch syndrome is part of his personality.

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So as of right now, the ultimate cause can't be treated, only the proximal issues can be treated. So that’s pretty much-- I try to stay solution-oriented. So I will have the regular tests done on things that they know can cause issues. So we'll look at the thyroid, the duodenum, keep an eye on the small bowel, that kind of thing. But as far as the condition as a whole, I mean, in a sense, it does define me, because it's rare. So, you know, there is that issue. So I guess, in a sense, I do think of it as an aspect of my personality. But I don't think it affects my day-to-day.

 

Paul, an atheist, says he derives comfort from his belief in science and connection to nature.

Paul, an atheist, says he derives comfort from his belief in science and connection to nature.

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It's great that lots of people have lots of different kinds of beliefs. But for me, I don’t really-- as far as spirituality goes, I don’t believe in a supernatural soul. So I don't have spirituality in that sense. But again, we're a very science-centered at home. So for me, I have a concept that I like. I think there is an atheistic, I'm thinking of the word-- reincarnation, an atheistic reincarnation, in the sense that, I believe it's the first law of thermodynamics says that energy cannot be created or destroyed, only transmuted. So when you die, the energy-- because your brain is basically a wet cell battery, so there is electricity-- and then the matter of your body can't be created or destroyed. So if you were to decompose, then you just become a part of the natural cycle.
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So if I could fertilize plants and trees-- so say for the sake of argument, I fertilize an apple tree, and then somebody eats the apple so part of me is in that tree and part of me is in that apple, because my matter can't be created or destroyed. It can just go somewhere else.
Right.
So for me, that's spirituality for me, in that as long as I'm not sealed up in a box, in a, you know, in a wooden box, in a concrete box, in the ground, I'm going to go back to nature. So that comforts me. So I'm not terribly worried about dying, because I'll just go back to nature.

 

Paul says his wife is better at dealing with complex health information than he is.

Paul says his wife is better at dealing with complex health information than he is.

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When we go to see a doctor, she already knows a lot more of what they're talking about, being a biologist by education. But then, also, anything that she doesn't know or is concerned about, it's very easy for her to-- she knows where to go to look to find the information. So she was very, very helpful. And just being my wife and being my partner, so helping me in that way, she was she was amazing. But also, fringe benefit is that I never really had to worry about medical things that I didn't understand, because I think a lot of people don't get don't get the kind of care or treatment that they could get if they knew how to ask for it or what things to be concerned about or not to be concerned about.

 

Paul explained how talking to a professional counsellor was different from talking to family.

Paul explained how talking to a professional counsellor was different from talking to family.

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So it’s OK to have those feelings, and it's OK to reach out for help. Like speaking to a counselor, that helped me out. Just being able to talk to somebody about it, you know, without having to-- like speaking to my wife, you know, I would want to, you know, not intentionally, but subconsciously, sort of guard against being too open about things. Because you don't want your family to be concerned about you, if you, you know—like wow. This...
It’s OK.
I mean, not that you don't want to let them in on your concerns, but with a counselor you can maybe be a little more honest about how difficult things are for you, because you don't need to put a sort of brave face for your family so everybody knows you're OK and you're doing well.
Right.
Because it can be tough to ask for help, and it can be tough to admit that you're not doing well.

 

Paul says his employer was willing to accommodate his needs.

Paul says his employer was willing to accommodate his needs.

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But I also have good fortune to work at a kind of a smaller company where they're a bit more understanding.
Mm-hmm.
So I've had to take large amounts of time off for surgeries and recoveries, and, you know, they're just, “take the time you need, and, you know, get healthy, and come back.”
Mm-hmm.
And they allowed me to come back on light duty until I was up and running again. And now I'm at a point where I can just do the job, I have no restrictions. And, you know, I know that that can be an issue with people, that they-- you know, not a lot of people have the same luxury that I did of having understanding supervisors.

 

Paul advocates to be seen by certain doctors and leaves those who are not a good fit.

Paul advocates to be seen by certain doctors and leaves those who are not a good fit.

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Yeah. There is I think, like with any profession, there are, I don't want to say good doctors and bad doctors, but there are are doctors who maybe are able to communicate better, and there are doctors who are more willing to bring in other people, versus doctors who think, “I can do this. I can fix this.” So I have worked-- and again, I'll leave names out-- but I have worked with doctors who I immediately did not like. And again, that's part of being your own advocate, is if you feel like the doctor, or the people they work with, or the facility is not for you, then you just have to cut it off and leave. And I think people have this idea that the doctor always knows better than you. And that's not always the case. You know yourself. You know what's the best for you. So I did see a doctor who diagnosed the stomach issue. And he was a good doctor in some ways, but I had decided that there were various things about his practice that didn't work for me. So I ended up leaving and going to see another group of doctors who specialize in genetic bowel cancers. And that seemed like a pretty good fit for me.

 

Paul’s self-advocacy includes educating doctors about his FAP mutation

Paul’s self-advocacy includes educating doctors about his FAP mutation

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And that's also another reason for having to be your own your own advocate, is that there's not a lot of information available for my condition. Because few enough people are affected by it, but then even fewer people also develop stomach issues. So there's much less information about that. So yeah, and even-—you and I talked about earlier—even speaking to medical professionals, when I explain to them what I have and what I've had done, they're usually kind of taken aback.
Yeah.
So I even have to sort of-- I've had the walk doctors and nurses through it a little bit.

 

Paul says he has gotten used to things that seemed impossible at first.

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What's coming next? Because there are other areas that can be affected by my condition.... But it’s surprising what you can get used to and how quickly you can get used to it.
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When they first started talking about gastrectomy, many years ago before they decided the polyps in my stomach were benign, my thought was “I'll just let it kill me. I'm not having another surgery.” And then when they said, “well, I think you're you might have to have your stomach out,” I was like, “OK, cool. Let's do it.” Because you can be cavalier about it, but I have decided, also, having survived the first couple of surgeries, I’ve decided that I would pretty much just like to live forever. So I was like, “OK, cool. Sign me up. Let's have the surgery. Let's do what we need to do.”

 

Paul says polyposis syndrome can be an “invisible disease,” so his message to family and friends is “believe us when we say we don’t feel good.”

Paul says polyposis syndrome can be an “invisible disease,” so his message to family and friends is “believe us when we say we don’t feel good.”

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It's sort of like an invisible disease. Because people tend to take you seriously if they can see your issue.
Mm-hmm.
So for me, people can't see it. And so for people with these other conditions, you know, in a sense, they’re invisible. So the message would be, just believe people if they're feeling poorly or, you know, believe what they tell you. I can’t go out with you tonight, because of whatever reason. Either I'm not feeling well or I can't go there, because I can't eat or drink the things that other people are eating and drinking. You know? And I guess it's similar to somebody in AA. You know, I can't go there because people are drinking. So I mean, I've been lucky, again, to have very, very supportive people in my life. Although, I did have somebody once tell me that it was because I had such a negative attitude, especially earlier in life. And if I had been more positive, maybe I wouldn't have gotten sick. So I had some words for that that I won't repeat here. So not everybody is going to be-- they think they're being supportive, but they're not. I've been lucky enough to have friends and family who are very supportive. But yeah, basically, the issues that we have are not always going to be visible. And again, if you haven't gone through it, it's hard to understand it. So just listen and, you know, believe the people when they tell you about it.

 

Paul emphasizes the importance of learning from people who've actually had the same procedures you are undergoing.

Paul emphasizes the importance of learning from people who've actually had the same procedures you are undergoing.

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You mentioned wanting to do this interview in order to be of use. Anything more you want to say about that?
Again, for people who are going through this or are going to be facing it, I think it’s a good idea for them to have as much information as possible. And speaking to or listening to people who have had it done is, I think, the best way. Because, again, you know, doctors have great information and they're able to give you that information, but they've not had it done. So unless you are in a rare circumstance where somebody on your medical team has had a gastrectomy, then they’re giving you academic information. And they can give you information based on patients they've seen and what they've seen of recovery, but, again, they've not had it done. So I wanted to do this just so other people could see it. And even just knowing that other people have gone through it and have had a hard time, because if you're going through this recovery and you're having a hard time with it, you know, you might feel like you're failing in some way, or you're having complications other people haven't had, or you're not emotionally or psychologically tough enough for it. And, you know, I'd like people to know that that's not true. That it's dark for everybody, and it's hard for everybody.

 

Paul wants people facing a polyposis syndrome to know that asking for help is not a sign of weakness, and that they will get through their struggles.

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It felt good to be able to talk to somebody who was facing the surgery, to tell them, you know, and not sugarcoat it, like it's going to be really hard. People are going to tell it's going to be hard, but you don't know. They're not being, you know, because doctors want to tell you what to expect, but you want to put the most positive spin on it that you can. But I think it's better for people to know that, that first six months, to just live it. Just go through it. Don’t try to-- you want to be positive about it, but it's going to be dark. And you're just going to have to experience that and live through it. But also, let them know that you will come out the other side, and you will be OK. So it was nice to be able to talk to some people about that.
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And it's OK. It’s OK to-- you have to ask for help. You know, I was I was lucky enough to have my wife by my side, who was there for me. But not everybody has that. So, you know, if you need some help with cooking, or well, not that you're going to can do much cooking-- but if you need help with housework, or getting somewhere, or even medical issues, you know, understanding or knowing how to how to ask for things, you know, you should ask for that help. It's not it’s not a weakness. It's not a failure. It's tough.
Yeah.
But also, it's important for them to know that you will come out the other side and you will be OK.