Young Survivorship: Why We Need Our Cancer Friends

Julia Becker Collins was diagnosed with thyroid cancer in 2020.

Cancer friends are one of the most important elements of survivorship, we need people who get what we've been through. Who else can you laugh about chemo constipation or the horror of chemical menopause with?

Once we've finished treatment our friends and family often have the expectation that we're better. That we'll slip back into our pre-cancer life and go back to normal. If only it was that easy!

Getting back to normal after cancer

Cancer changes everything, I hardly recognise the person I was before my breast cancer diagnosis. I have been completely and utterly altered by my cancer experience, I spent the first year after chemo and radiation feeling lost.

No one tells you how hard recovery can be when you're signed off by your oncologist. I often recount my oncologist telling me 'now we encourage you to go and live your life'. To this day I have no idea what that means. It can be easy to berate ourselves for not being better quicker. The truth is recovering from cancer treatment is often a long and slow process.

Thyroid cancer during a pandemic

In this week's episode my guest, Julia Becker Collins, and I talk about what young survivorship means. We both dislike the word survivorship! There really isn't a good phrase to describe post-cancer life. The dumpster fire? Cluster fuck?

Julia was in the process of being diagnosed with thyroid cancer when the State of Massachusett, where she lives, completely shut down in 2020. Covid was sweeping through the US and caused a huge strain on the health system.

At the time Julia was a COO of a successful advertising agency, regularly competed in ultra-marathon races, and was generally taking life by the balls.

Life after cancer

After going through intensive treatment Julia was left trying to figure out how to get back to normal. She talked about coming to the realisation the fun-loving person she was before cancer doesn't exist anymore. There was no going back.

Her experience echoes so many younger people I have spoken to since my own cancer diagnosis. Julia's turning point was going to a weekend for younger people impacted by cancer. She found her 'people' and realised she was going to need her cancer friends to help her navigate the maze of young survivorship.

Check out the full episode for our hilarious conversation about dealing with cancer as a younger person.

Episode Transcript

[00:00:00] Helen: Kia ora and welcome to the C-word radio. The podcast for cancery, people who want real conversations about cancer. I'm your host. Helen can subscribe on apple podcasts, Spotify, or wherever you find good podcasts.

[00:00:18] Hello, and welcome back to another episode of the sea road radio. If you're new, thank you for listening. There are over 60 episodes of cancer stories for you to dive back into. If you love what you hear. Please leave a rating and review on apple podcasts or share among your friends. I would love as many people as possible to discover the amazing stories from my past guests.

[00:00:47] We are rapidly coming to the end of 2021. Which is crazy. I know I don't really have the right ways to describe this year. It's just, I don't know. I kind of feel like 20, [00:01:00] 20 and 2021 to have merged and to just this weird COVID world, I don't think last year, we kind of imagined the extent that COVID was going to change life for everyone and that we are living through a pandemic.

[00:01:18] It's yeah, it's wild. So I hope everyone is doing okay. I know that a lot of people are feeling really tired and burnt out and strung out. So now is the time to up that self-care put in those boundaries. If you need to look after yourself. Today's episode helped me realize I want to change direction with the podcast.

[00:01:43] I've loved creating episodes over the past year that this interview in particular really helped me realize where I want to channel. My passion is shift focus. My regular listeners will know that I was [00:02:00] diagnosed with breast cancer when I was 37 and 2018. And part of the reason I started this podcast was I was trying to figure out how on earth you rebuild life after a cancer diagnosis?

[00:02:12] Cause there, there really was. No tympany. After I finished a, I joked so many times because I loved this, that, that last oncology appointment where my oncologist said, no, we encourage you to go and live your life. And I internally screened, what on earth does that mean? Cause what does that mean? And I still don't really know what that means.

[00:02:36] But what I have learned is that younger people have quite a different experience and quite different challenges to people who are a bit older when they're diagnosed. We often face infidelity, employment challenges, ongoing health issues, relationship challenges. So, and then your year I go to is shifting my focus [00:03:00] to young survivorship.

[00:03:02] I hate the word survivor or survivorship. Honestly cannot think of another word to use. So maybe that can be another thing. I try to find an alternative word to survive a ship until then. I will definitely use it. One of the things I really want to explore as awaiting through the misinformation and learning how to recognize trust with the advice, because I have noticed that advice is either one of two extremes.

[00:03:34] Completely bat shit crazy or vague. Like you go on with your life, eat healthfully. By part of what I want to explore is what does that mean? How can you look at information and go? That is good advice because you know, much like with COVID and vaccines, there is a lot of really wacky, untrue, and. Quite frankly, snake [00:04:00] oil style information out there because I think people have had cancer after really, you know, you're, you're vulnerable and you have just had this life changing event.

[00:04:10] Your life has been put at risk. So you can be really vulnerable for, you know, some quite frankly crazy ideas. So that's one thing that I will be exploring, but also I will be bringing your stories from people like you and I, and early. You know, shining a light on what life is like for us when we've been through a cancer diagnosis.

[00:04:33] Mike is today statted on the cancer rollercoaster as COVID hit and cities across the U S started to shut down Julia Becker Collins as a CIO, an ultra marathon Brennan, and was diagnosed with thyroid cancer at the step of 2020. We sat down over zoom to talk about the highs and lows of being a cancer person during a [00:05:00] pandemic and how she is navigating post-treatment life.

[00:05:05] This is Julia's story. Thank you for joining me. It is lovely to meet you. Um, and I have to say, because we don't have video, but I have been admiring your amazing read here.

[00:05:21] Julia: I'm still getting used to the like post-cancer hair. It's that? It's a transition.

[00:05:28] Helen: Yeah,

[00:05:30] Julia: it's definitely.

[00:05:36] Oh, yeah, yeah, yeah. I didn't go through chemo. And so I think there's this sense. I mean, I'm sure, you know, right. Like there's a sense that the cancer patient is like bald skinny, like bedridden person and didn't go through chemo. So I didn't lose all my hair, but with thyroid cancer, you usually lose a lot of hair and it's not like a thing where like you lose it and then it comes back.

[00:05:59] It might be [00:06:00] done for forever. Oh, it's really delightful. So I had this huge thick hair head of hair and a different hair cut, which is really what you see in my head shots. And then I went through treatment. My hair is naturally curly, so I kind of like leaned into the curls because I was like, oh, don't make me look like I have more hair.

[00:06:22] Sometimes I still really want it to be straight, which is what you're seeing today. And it's like, oh, I have. Okay. Um, about three quarters of my hair. Wow. Yeah. And it might be permanent even though with thyroid cancer, the doctors will tell you, oh yeah. Um, I'm sitting here waiting

[00:06:54] Helen: the joys of twists and turns of [00:07:00]

[00:07:00] Julia: adventure.

[00:07:05] Helen: It would be quite good to, to sort of step back a little bit from before, hence that entered your life. Because I think that, you know, when I was, I was free here about, you know, before cancer and those sorts of things for yourself. And I felt like so many of my listeners will resonate with this, where you ask someone who is established in your career, you are, you know, doing good things, you're achieving and thriving and all those sorts of things.

[00:07:32] And then. You know, it cancer would never have been on the horizon. And so tell us a little bit about what life was like before. Did you hit your cancer

[00:07:44] Julia: diagnosis? Yeah, I mean, I, before I got diagnosed, I mean, I had a lot of health conditions before I got diagnosed. I have a good friend that's gone through, uh, I want to say three or four rounds of lymphoma.

[00:07:57] And she likes to say that cancer is least [00:08:00] complicated thing about her health. But sometimes I like to say that too, because it's just like, I had so many health complications before this, but maybe that. I don't want to say easier to deal with, but kind of like I knew how to manage a complex health problem, but I had a big life.

[00:08:18] I, you know, I'm a C-suite executive at a marketing agency. I'm an endurance athlete, running ultra marathons and Spartan events and 24 hour races. And I have a husband and two cats, and now I have a dog because I'm a victim of the pandemic puppy. Crazy. On house. I live in suburbia. I, for a lot of years commuted into the city, um, for your us listeners, I live outside of Boston and that can be a long commute, but I would drive all over the state as part of my job.

[00:08:51] I would, you know, drive all day, every day, I'd be on the road. I didn't have a desk job. And I was really somebody that had kind of [00:09:00] boundless energy and I got into long distance running and endurance. Partially because I had so much energy and I really I'm like a kid that needed an outlet. Like I needed somewhere to kind of focus all that energy helped with it.

[00:09:14] And it was a good challenge and it was a good mental challenge. I made good friends through that. It's a nice thing to do for myself. And I was somebody that was really focused on my career. Like I really liked to work. I like to work long hours. I was probably working 80 to 90 hours a week. I was training for these huge races.

[00:09:32] I was traveling all over the country to race. You know, I'm in my car all day, every day for work. And I loved it. I was in, you know, a big life and I would wake up at 4:30 AM every day. I would go work out. I would, you know, put on the head to toe outfit with makeup and hair and the whole nine yards. And it'd be in high heels and a suit all day.

[00:09:53] And presenting, speaking in front of huge crowds of people, giving sales pitches. No doing [00:10:00] slide deck. I was only at my desk, maybe one to two days a week on my phone a lot. Um, I could run the whole company from my phone and I had the mind that could reach back into time and tell you a conversation. I had 10 years ago and like word for word.

[00:10:18] I just was going for it. I just had great attention to detail. I had a great memory. I could tell you everything that happened in a conversation, what I was wearing and when it happened, everything happened around that. And it just all

[00:10:31] Helen: changed.

[00:10:39] Yeah. Yeah. That's probably the best way of saying I just, yeah, I mean, I, wasn't getting up at four 30.

[00:10:54] But it's just that, you know, when you're younger, I was 37 when I was diagnosed with [00:11:00] cancer and yeah, you really, you had been exploring it and kind of establishing yourself and achieving and all of those things. And it's really hard to explain to other people who haven't been through something similar that your world literally turns on its head.

[00:11:17] It just changes like you can't go back. Well, some people do, but it's just like, there is a definite shift in the cosmos when you get that diagnosis. So yeah. What was, cause I don't know a lot about firearm kids. What was going on that made you think, oh, I need to get this checked out. What are the symptoms?

[00:11:40] Julia: Oh, I mean nothing.

[00:11:45] I mean, I don't want to like give you bad sense of things, but then

[00:11:54] there's everybody when I tell them that, but it's theirs. Th there's. I mean, [00:12:00] like with all cancers, there's a lot of different types and subsets of thyroid cancer, papillary thyroid cancer. But then I have another subset, you know, below and below and below that. So have malaria thyroid cancer is one of the most common types of thyroid cancer, which is good in that they know more about it, but it's bad in that.

[00:12:20] Oh, it's more common. So you'll be fine. I had a more advanced form of the more common type. So then I got dismissed. I had to find a new doctor because of that. And it was a whole long thing, which I'm sure a lot of people have dealt with, but it really one of, you know, hindsight, really the only side effect or, you know, thing I could have maybe realized I had this cough.

[00:12:46] And then the other side of that is I have. Yeah. I have a cop all day and I'm a long distance runner and I live in new England and the United States where it's freezing cold in the winter. [00:13:00] And I got diagnosed in the winter. So I would have a cup anyway, you haven't hot right now because I just had tonsils.

[00:13:09] So you could have a coffin, not have fabricated. I'm plenty of people have thyroid cancer, never have, but this was a cough that never went away. This was a cough that I've had. I mean, I want to say for a couple of years. Wow. Yeah. Could it have been, I mean, I'm shrugging your listeners. Can't see me. I'm shrugging and going, maybe shutting emoji.

[00:13:29] This is how I feel about cancer. The other big symptom is that you can, if the tumor gets larger, I can only equate it to breast cancer. The tumor gets large enough. You could feel it right. And so like, you know, there's the whole, feel it on the first campaign with breast cancer. I always tell people if you're going to feel it on the first video, your breasts, you should feel you should do a neck check with your Mac because you can absolutely feel a nodule on your thyroid.

[00:13:59] Just [00:14:00] like you can feel a nodule. And so once it was pointed out to me, I was like, oh God, have I not know that was there because it was golf ball sized sitting right here on my, you know, you can see it's sitting there just hanging out, you know? And I look back at photos for like the six months before I was diagnosed.

[00:14:22] And I was like, how did I not? It's just these huge. Nobody because it's so slow growing and nobody saw it. And the way they caught it was that I went in for an annual physical, and it was one of those, like, you know, I'm a healthy adult. I have a lot of chronic diseases, but they're all managed by special.

[00:14:44] And my primary care physician has been my primary care physician for 15 years. And I reach out to her if I need anything and she gets copied on everything. So she really has a great understanding of what's going on and I get regular blood work done anyway. And I had [00:15:00] blood work done before my, um, annual physical and all came back.

[00:15:02] Perfect. So they would have never picked up on it from blood work, from standard blood work, some more advanced blood work found other stuff, but they wouldn't have known any of that. And she was just doing a regular physical and, you know, they like listen to your chest and look down your throat, may do a breast exam, and then they feel your NAF.

[00:15:24] And she looks me dead in the eyes and she goes, your thyroid. She's like, I want you to swallow, lean your head back and smell. Because it's on a guy, it's the Adam's apple. Just what you see what follows. And she's like, oh yeah, that's your thyroid. She's like, but don't worry. Cause you could, it could be benign just like women get benign fatty deposits in Nebraska.

[00:15:46] It could absolutely be benign. I was like, okay, fine. She's like, I want to send you for an ultrasound. Great. Go for the ultrasound. It comes back. She calls me after 5:00 PM, which you always know, is there a [00:16:00] really bad sign? She called me. She's like, this is concerning. We're going to want you to go for a biopsy.

[00:16:07] And I didn't understand how bad the biopsy we can be with like the needle. That's like, you know, this long getting jammed into your neck, but then the worst part of that is she calls me on a Friday to tell me I need to go for the biopsy, except the Saturday, the next day, the whole Commonwealth of Massachusetts shut down for COVID prices.

[00:16:26] So nobody called the schedule that biopsy ever, never, nobody ever called. That was March 22. Oh,

[00:16:39] no. Now I'm not somebody who freaks out. I tend to be very, like, everything will be okay or I'll figure it out or don't tend to freak out. But at that point I was like, now we have problems. So I called my cousin, who's an oncologist in Colorado. And I was like, okay, what do I do at this point? Because. I can't even get ahold of my doctor's [00:17:00] office.

[00:17:00] Nobody's answering the whole state is shut down. I can't do anything. I don't blame my doctor's office because nobody knows what to do. And I sent him the results of the ultrasound and he's like, you need a biopsy. I was like, yes, I know that

[00:17:17] I'm in Colorado. You want to come here. So kind of walk me through what was happening in hospital systems and you know, kind of the red tape of it. And he's like, we need to switch you to a different hospital system on that. You know, hit by the COVID crisis. Cause my primary care is in one that was one of the hardest hit in all of Massachusetts and it's just coincidental.

[00:17:39] So we just switched me to a hospital system. That's literally down the road and it didn't matter who the doctor was. I was just like, I need a person to order the test. He in the door, tell me if this is cancer. And we were all getting. No, I'm sure it's not cancer. Even my oncologist, cousin who works on really [00:18:00] complex stuff said, you know, 98% chance, this is benign, but we need to know.

[00:18:05] So I got an appointment with an endocrinologist, which somebody who really deals with the thyroid. And she said the same thing, you know, 98% chance, but we really need that fine grade. They get me in the same week for a biopsy, which is great. And then I got the call after five. Yeah.

[00:18:23] You sitting down and I was like, okay, it's cancer. You really, people need to learn how to tell people differently.

[00:18:32] I was like, Nope, just tell me. And she's like, it's my leg. And I was like, okay. So what do we do? I need plan. Tell me what we're doing. What is the next step? Just do you need time to know? Are you going to be okay? Just tell me, what do we do now? I need steps. I need concrete, logical, next step. We do chemo or we're doing radiation oncology.

[00:18:58] What do we do? And so she's [00:19:00] like, well, you need to talk to a thyroid surgeon because, um, the first step with Irie cancer is surgery. So I know all different cancers have all their friends, you know, you could choose call. Hey, you can choose call me. We're thinking we'll do. Thyroid cancer is like straight to surgery.

[00:19:16] Always. We want to get out as much as we can. And mine had gone from one side to the other side. It's invaded both sides. We take the whole thing out and the way it was told to me was cool. Just have the thyroid taken out and you'll be fine. And you'll just think of hell for the rest of your life. And it'll be easy peasy.

[00:19:34] It was not.

[00:19:45] Helen: Uh, Yeah. Yeah, yeah, yeah.

[00:19:49] Julia: That's sort of like how it happened.

[00:19:51] Helen: Wow. It's really, I mean, I think there are two things, especially for, for Kiwis. Um, cause our health system is slightly different and I [00:20:00] think kind of it hit us a little bit later. And so we were watching this unfold going, oh my God, when is, you know, we kind of come here and also, you know, most of our health is done through a public health system.

[00:20:16] And so I'm curious about how that worked for you. I mean, was it, what is the process? So you want to

[00:20:23] Julia: know about the nightmare? Okay.

[00:20:29] So I will start off by saying I have very good health insurance and my experience is not going to be everybody's experience because my health insurance, while I have had to battle with them, I have not had to battle as much as most people have had battles. So I will say that going into this, I can't be that, you know, assaulted.

[00:20:46] I am slightly salty about it because I just spent the past couple of weeks really fighting with them, but I won. So that's fine. They, my health insurance was fine. They were, you know, do whatever you need to do or cover it. [00:21:00] Um, there's copays and you know, you pay however many dollars for the doctor's visits, $40 and you pay however much for medication.

[00:21:10] Once you hit, you know, I had already hit my deductible for the year, so I have a $500 deductible, which means like, you pay everything for forget prescriptions for a second month, a whole other ball of wax, but pay everything. That's not like going to your regular doctor for a physical up to $500. And then after that we cover X amount.

[00:21:33] I had already hit that because I broke my elbow. Sure earlier in the year, so that got I've already hit that. So we're fine. So I started to pay for things. What am I health insurance has broken down is, has co-insurance. So I pay like a percentage of what everything. Which is that's fine. Like $10,000. I pay a hundred dollars for something that's manageable.

[00:21:59] Again, I have [00:22:00] very good health insurance. There's a lot of people out there that don't have health insurance like me. Um, my husband works for a very large company, and so we are very fortunate to have that. And then at a certain point in the U S you're going to hit an out-of-pocket maximum, which means that you will, and most.

[00:22:17] I don't want to say everyone, but a lot of people with cancer hit the out of pocket max every year. And that means like you have spent you, the patient has spent the maximum contracted that you're allowed to spend. And then everything after that is free. So then it's like the joke in the cancer community.

[00:22:34] How can you get your out of pocket max? The fast? So you get as much free as humanly possible. I am $80 away from mine this year, and I am very excited. Because everything is free. Your prescriptions are free. Your tests are free. Your doctor's visits are free. Everything. I'm like bring on the socialized healthcare because I get two full months of it last year in 2020 when I had [00:23:00] diagnosed and I started treatment and I broke my elbow, I hit the out-of-pocket max in like may, so I didn't have to pay for anything.

[00:23:11] After that. So I think my out of pocket max is $4,000 or $4,500, which I mean is money is real money, but is significantly lower than most people in the United States. Again, I have great health insurance, so I was. Refill, all the prescriptions and everything this year, I've already booked my mammogram. I'm like, yeah.

[00:23:36] All the tests that health insurance,

[00:23:44] yeah. Insurance can be real spicy about things. They'll be like, no, we don't want you to get this. We want you to do that. And I'm like, oh, are you a doctor? I wasn't aware that you're a doctor because I have doctors. Yeah.

[00:23:53] Helen: Yeah. I think it's really fascinating to us because, I mean, we don't, I mean, I, for instance, I do have health [00:24:00] insurance and so most of my treatment was done through private healthcare and I chose to go that way because it was much faster with diagnosis and things because I was.

[00:24:11] Well, they missed it. The first time I went cause I was 37. So of course that lumps not going to be pressed cancer. Don't worry about it. No. And so after that I was like, I'm not messing around with. You know, and so my experience has probably be slightly different to maybe other people. But the funniest thing is, is that your doctor, your surgeon or oncologist is probably also working in the public hospital.

[00:24:37] And so it's not like. Out as such in terms of the level of vehicle, but what, what happens here is for instance, I wouldn't have had eight rounds of chemo if I'd been in the public system, but I got eight rounds because I could pay for it through my, yeah. So there is these, there are these [00:25:00] sort of anomalies like that.

[00:25:01] And so I think when we look at the us. For the cancer community here. One of the things that I think people are always curious about or interested in is that I think we feel like you have access to more trucks.

[00:25:17] Julia: Your insurance will pay for it. So like for thyroid cancer, if you end up needing. So after I have surgery, some people, not everyone need radiation. So I needed radiation because my. They did, you know, pathology and blah, blah, blah, blah. And they found that cancer had progressed further than they originally thought.

[00:25:38] And it moved into my lymph nodes and it was also B RAF positive, which is a genetic mutation. So it's just more advanced, right? Fine. So that means you need to go through radiation. Radiation for thyroid cancer is, uh, you invest the radiation. Oh, wow. Just as fun as it sounds. Uh, and so [00:26:00] you become radioactive and you have to isolate from all other living beings.

[00:26:06] Cats dogs, human plants, everything. Cause you can give them cancer. I don't know any other cancer where you can spread. You

[00:26:16] give other beings thyroid cancer because you are radioactive and you can get thyroid cancer from being exposed to radioactivity. It's really, if there's something that. So before Rayvon for the radiation treatment. Cause they give you a huge dose all at once. So instead of going like weekly for radiation, go for like one dose.

[00:26:39] Oh, active in your system for like a year. Yeah, it's a whole thing. Wow. I carry a card with you that says you're radioactive, it's 11 in my wallet. But before you go in for that, you have to go off of your medication because they want any kind of cell in your body that could be cancer or could be [00:27:00] thyroid cells.

[00:27:00] I kind of moved elsewhere in your body to show up. And like react to the radiation and they're going to be suppressed. If you're on medication, you said weeks to get the medication out of your body. And if you go off your daily medication, which you have to be on for the rest of your life, you don't have a choice.

[00:27:18] If you go off of it, you're going to feel. Horrible atrocious. Horrible. So the other option is rather than go off of your medication, you can have this injection done. Uh, what you get two separate injections. One is two days before radiation. One is the day before radiation, except that most insurances won't cover the exact.

[00:27:39] My insurance power net. And there's definitely a side of facts and it's not exactly fun because it basically throws you into hypothyroidism like all at once, but it's only a couple of days of that versus weeks and weeks and weeks of that. And so if your insurance won't cover the injections. You're sick for weeks because you have to go off your meds [00:28:00] for the radiation work.

[00:28:01] And not everyone only gets to do one dose radiation. Some people have to do more than one dose of radiation, but if it comes back, they'll have to do it again. Your insurance will cover. So my insurance covered it, but most fun, it's a big battle. Um, a lot of thyroid cancer patients just can't get their insurances to cover those injections and not fun injections, but it's better than not being on your meds for weeks.

[00:28:27] Helen: Yeah. And I, I have a friend that has had, uh, um, problems with your thyroid is have a slight insight into some of the things that she's gone through with the leading up to diet, you know, finding out it was her thyroid. For anyone who hasn't had to deal with it, you don't have your thyroid fraction what's going on.

[00:28:48] Julia: So I understand what the thyroid did before I got diagnosed. I had no any, if you had just tested my thyroid function, it would have been perfect. I had a perfectly working thyroid minus the fact that it was growing a [00:29:00] giant cancer. Yeah. So it was, it was like perfect numbers. And I, again, I had boundless energy.

[00:29:08] I had, you know, I was doing all these things. And when I didn't understand was that your thyroid is like, if you ever saw that cartoon movie inside out where it has like all the little colored guys in the central control system, that's basically your thyroid thyroid is saying. How hot should your body be?

[00:29:26] How cold should your body be? Did you do, should you grow hair? Should you not grow hair? How much energy should you have? How do you process food? Do you want to even eat food? How do you sleep? How much do you urinate? How does your body process food? How do you sweat? How do you, um, how does your brain have dreams?

[00:29:48] Everything it's. How does your body function? Entirely. So if your body has central control system, it would be your thyroid. Like if you imagine all of your organs kind of coming to a central point, that would be your [00:30:00] thyroid. And if you don't have one, it's like the wild, wild west in your mind. And then the way that, you know, somebody has a thyroid or body kind of works is kind of go through your day.

[00:30:13] You have a more active day and your body calls upon your thyroid. You say, Hey, I need more juice today. Like more gas in the tank and your body's like, cool, I need more gas and other fibroids. Like here's more gas and it kind of squeezes it out. That's great. And then on average, you produce X amount of gas as a part of your life and what you need to metabolize your food and live your life and stay warm or stakeholder or whatever.

[00:30:36] Somebody who doesn't have a thyroid like. You take medication to kind of substitute for that thyroid. And I can tell you a whole story about trying to find the right medication or the right dosage. Most of the medication to substitute out a thyroid has gluten in it and I have celiac and that was super fun.

[00:30:57] And actually nobody in the [00:31:00] endocrine community even knows that. So that was great for me. Forget that for one second,

[00:31:09] you don't have a thyroid and you take a medication every day. That's like you, you know, putting gas in your tank every. So every single day, you have to put gas in the tank. And there's very strict guidelines about like, when you put gas in the tank, how you put gasoline tank, where you put gas in the tank, what else you can do around putting gas?

[00:31:28] The thing kind of have to follow all that fine. But once that gas is gone, that's it. There's no worries. So if you use all your gas, you just you're empty and you don't get any more until the next. Yeah, there's no more to take into your body. Just turns off. And so I just call it like the best way I can explain is like, I try to talk to my husband about it, really understand, and he's a caring, kind, compassionate human who doesn't have cancer or thyroid problem or anything.

[00:31:55] And so I just try to explain to him like, honey, it's not that I'm tired. It's that? I'm thyroid tired. [00:32:00] Yeah. There's no, I'm just being lazy or I'm just like, oh, I had a long day. I'm like, I physically cannot. Even if I wanted to, there is no, I will, like, I will make myself sick and if I try to move and do things, that's it.

[00:32:15] I have no more juice for like a week. Uh, and as an endurance athlete, It's presented a whole host of problems because I'm like the most type a extroverted, you know, person that's ever existed. I want to do all the things. So I have somehow Jerry rigged my like non-existent thyroid to work through an endurance event and keep me going.

[00:32:40] And then I crash immediately.

[00:32:47] Helen: I just, I mean, I'm not an insurance athlete.

[00:32:53] I've always been active because exercise is being pat of my, how I keep well, how I came, you know, [00:33:00] saying, and, and, and, uh, you know, it's just as a part of, has been a part of my life since. You know, and a younger person I can remember. Cause I mean, chemo wipes me. Okay. As you're talking, I'm thinking the only sort of insight I think I can have to, that is what chemo fatigue is like.

[00:33:17] And that goes on for, you know, they say, okay, you're finished now, but no one says you're going to be exhausted for the next two years.

[00:33:31] But I, but it's, I can empathize with that frustration of going from an active person who is, you know, working, they've got their interests, they're doing things and living life. And then you go through this experience. Your body doesn't do that anymore. And trying to, trying to be okay with it, try and find that acceptance around.

[00:33:52] They're trying to figure out, well, how does my body work now and how do I get back to a point where I can fail kind of, you know, [00:34:00] Yeah, good. And in my body and what I'm doing, how has it been for you? Like what process have you had to go through is laughing.

[00:34:13] Julia: I think part of it is, and, you know, I thought this was just me going through this process, but now that I have a lot more conversations with people in the cancer community and I've created a lot of really great cancer friends. And I just, I don't know if you listened to the cancer patient product. But it's basically like my ride or die.

[00:34:30] Um, they had just said on it recently that survivorship requires cancer friends. And I was like, uh, yeah. Yeah. Cause nobody prepares you for survivorship. And also I hate the term survivor, but that's a conversation for another day, but there's no guidebook. It's like you spend treatment, you spend active treatment trying to.

[00:34:54] I feel like I need to live. I need to live. I need to live. And then you have this idea in your head. I'm going to get back to the life I [00:35:00] have. This is like a bump in the road, back to the life I had all my doctors, at least in my case, my doctor is like cancer. Your life. You're going to take one pill for the rest of your life.

[00:35:14] And you'll be back on that insurance track in no time. Yeah, I am calling BS on that. So, you know, I'm still waiting for the good cancer. Yeah. Well, what I did not understand was that, that life's not there anymore. That's life doesn't exist anymore. That person doesn't exist anymore. And so trying to get back to the person I used to be, and the life I used to have, forget the pandemic, you know, that adds a whole other thing to it, but that doesn't exist because the person I was before, it was a person that never had.

[00:35:48] I never experienced what I experienced and never had the deep bone pain of radiation going through isolation in a room when he can't move that never had to question [00:36:00] whether they were going to live. No, even with all the health struggles I've gone through, I never like sat there and been like, oh my God, like.

[00:36:09] Celiac, isn't going to kill me. It's just really uncomfortable. It's just forget, like questioning your mortality, you know, everything else around it. Whether or not your friends stick around whether or not your family is supportive, whether or not, you know, your life is what anybody else wants it to be. I just saw a quote the other day that was like, you know, your friends aren't sticking around because they keep wanting you to be who you used to be.

[00:36:35] And it's like, yeah, because that person was fun-loving. And that person doesn't exist anymore because now I know now I know. And now my humorous, I mean, my humor was dark before it now might be worse when you're not on board. I'm not changing who I am for, you know, like this is it. This is who I am. I think the only way to like survive survivorship is to kind of understand that [00:37:00] like there's no going back.

[00:37:01] There's no, only to go back to that. You know, we keep talking about the new normal and the pandemic and I'm like, forget the new normal in the pandemic. I'm trying to figure out my new, normal and cancer. I have cancer that has a very high survivor rate, but has a very high recurrence rate. So it's coming back.

[00:37:19] It's guaranteed coming down. I'm having another insight. I'm just like sitting here,

[00:37:28] like checking, like what's going to metastasize. Cause it's done. It's such a high recurrence rate that I'm just waiting for it at this point. But like what decisions do you make in your life? Because you know,

[00:37:42] Helen: Yeah. There's so much there that I just have extended nodding back. I don't, if you have these in the states, there's sort of dogs you put on the back of your car and it just nods as you ride along, because this is, I, I struggle with the witch supply for too cause like, what if I survived?

[00:37:59] [00:38:00] You know, what if I, I think I don't even recognize photos of my. Before, you know, I don't connect with that person. I think, God, that was me. That's so weird. And this is only what 2018 was mid 2018 was when I was diagnosed. And I feel like part of. Part of that struggle for, I think a lot of people and perhaps people who were had their cancer around the pandemic as well, because I finished active treatment because I had who seeped in, which is a very specific drug to the type of cancer I had.

[00:38:35] And that finished in October of 2019. And then, you know, a few months later, the pandemic hits and I love what you sit there about. Yeah. I was still trying to figure out how watch, what now? Like what, what do I do with this life? You know, I'm angry and kind of like so tired and not knowing what to do. And then the pandemic [00:39:00] hits.

[00:39:00] It does add this extra layer because I was thinking. Thank you, Matt, this last night, actually, we are, it's really hard to plan anything cause what, like we can't go anywhere and it's so all of a sudden it's like, this is your new normal, and now we're in an unprecedented time. And so you sort of think, I don't know how to do this.

[00:39:22] I didn't know how to do post-cancer. After cancer before the pandemic, let alone one on earth is this life now, like how do we do this? How do I, yeah. Sort of muddle through everything that's gone on and get that dark humor for me is the things that sort of gets you through. You have to kind of, sometimes you just have to laugh.

[00:39:45] Um, this was not in the plan,

[00:39:47] Julia: right? I think, I don't know how I would've gotten this far. A if I hadn't found like really great communities online, and then I went on first to sense, which is a US-based [00:40:00] AYA, adolescent, young adult cancer. Nonprofit. And they do, um, trips, free trips for people that are diagnosed under the age of 40 and it's all outdoor stuff.

[00:40:13] So like rock climbing, uh, whitewater, rafting, whatever. And so they in pause and play 20. And then in 2021, they rebooted. Kind of a like reframed version, much smaller. COVID safe that I signed up for it because I love outdoor stuff. And I was so desperate for like human connection. I didn't sign up for it being like, I need cancer friends.

[00:40:37] I signed up for it. Cause I was like, Ooh, rock climbing. This sounds fun. And it's free. That's great. But what I didn't understand it at the time was like, all of that was secondary. Like the rock climbing is great, but what I really needed was a weekend with no cell phone service with other people that I could just talk to and just be my whole 100% self.

[00:40:59] And nobody's [00:41:00] going to get weird about. And I don't have to filter what I'm saying and I don't have to like, be like, oh, I have to edit that out because they don't understand why I'm talking about when I'm going to die or you know how I'm doing my estate planning. You know, how I put my pants at this thing and de land.

[00:41:21] Get any, you can be your whole authentic self to get them. And, uh, I made, so first of all, I made friends that I'm gonna have for forever. Second of all, it was like three years worth of therapy. In three days, I felt so much better when I got back, my husband was like, you were really mad. I was in a very bad place.

[00:41:43] I was so mad. I was mad at like the whole world. I was like, Why do I still hurt everywhere? Why can I not process food correctly? Why like, why me? Why everything? I'm. So like, I was so healthy [00:42:00] before I had taken such good care of myself and had huge health scare, like six or seven years ago and got over it and I got past it.

[00:42:06] Not cancer. Again, I'm doing this again. Like haven't I paid my dues haven't I like, come on. I was so bad, like, and I was just not treating people in my life. Well, and I'm just like very much in a bad place. I like go away for three days and I called nobody in my life for three days. And I just spend three days at this.

[00:42:25] Like, I call it a cancer retreat. I don't know what else to call it. Some people call it cancer camp and I come back and I'm like, huh. Okay. Yeah. It was like my husband. He was like, I don't know what they did to you, but we're donating so much money.

[00:42:46] Yeah. But that was great. He's like, when are you seeing those friends again?

[00:42:59] I don't know how [00:43:00] to, you know what I mean?

[00:43:02] Helen: I do. It was like, How do you socialize when you're yeah, you've just been through what you've been through and people are, how are you? And you're like, well, I'm bold and bloated. And I have chronic chronic reflux and everything hurts and I'm bloated, but great.

[00:43:22] Yeah.

[00:43:24] Julia: I want to go to client meetings and they're like, how are you? You look amazing. I'm just like, I don't feel amazing, but I guess, you know, whatever, let's move on. Just like, I just, it just is like, I don't, like, I know I don't look great. I know I don't feel great, but like, I'd rather just be real about that then like sugarcoat it.

[00:43:51] But most people can't handle that.

[00:43:53] Helen: So, no, and it's interesting that we'll be talking about this, cause this is something I've been. I think [00:44:00] as I'm at the point where I'm trying to figure out how do I address some of these things. And some of it has been, you know, talking to a grief counselor or, um, you know, I did, I went to a waking cancer retreat as well at the end of 2019.

[00:44:13] And yeah, it was amazing. Cause it was, you could, it was a space where you didn't have to send, so you didn't have to filter anything you were saying. And I think I left ones or people who, you know, Joe Bloggs on the street, they can. Cope with the thing that cancer actually, isn't this amazing set of, oh, I've had, now I'm a survivor and you know, it's wonderful.

[00:44:37] And now I'm going to be this inspirational thing. It's like, I messed up, man.

[00:44:47] Julia: I'm sure there is a small subsection of that cancer population that got through cancer and tended to have PTSD, but I don't know any of them and I'm not one of them. I just it's, you know, that's why. [00:45:00] Yeah. You know, I feel like once you're in the club that nobody wants to be in, I feel like you can talk about things that nobody else gets and

[00:45:08] Helen: no, and I think this is, this is what fascinates me and.

[00:45:14] At the time of recording, this is breast cancer awareness month, which I have. For so many reasons it's like, but I think the other issue is, is that what it takes away is that you and I have had very different cancers and we probably have, you know, there are different issues and things, but what you're talking about, the essence of what you're talking about is.

[00:45:35] The cancer experience and it's not, you know, I think breast cancer has captured the market well and magazine and pink reifying things and that sort of stuff. But I love that pink washing. It makes me mad, but what it takes away is the devastating. A cancer diagnosis has on someone's life. You know, [00:46:00] and this is why I like to talk to Jennifer Vevo because it's like heroin, you know, this, this is what we need.

[00:46:07] This is the reality of it. And we may have different. Says in terms of how it's impacted our bodies and that sort of stuff, but the, yeah, the bomb went off for all of us. And now we're just trying to figure out what on earth now? What do we do with all this, you know,

[00:46:27] Julia: Super helpful to have these conversations because not only is it, you know, the common thread of cancer, but it's also, you know, there's no one face of cancer.

[00:46:35] Like we were talking about earlier, you know, there's this external view of the cancer patient has no hair and they're in a hospital bed and yes, it is absolutely some people's experience. And I don't want to minimalize that, but that's. Some people gain a ton of weight. Some people never lose their hair.

[00:46:51] Some people never go through chemo or radiation, but they have horrific surgeries. And some people there's so many [00:47:00] experiences and all of them are traumatic and none of them are inspirational.

[00:47:09] Helen: None of them

[00:47:14] say, oh, you're really brave and blah, blah, blah. And it's like, bloody choice. You can't go. I'm not going to do that. Well, you coach, but it's just, yeah, I don't know. I think as kind of, I hit home with the pandemic that people might start to understand that when you have something huge happening in your life, you have no other option then to experience it.

[00:47:44] Julia: To me. It's like, I got all of the tropes of like thoughts and prayers and you're such an inspiration. You're so brave. And, and then especially once I started racing again, so I did a virtual marathon in December of last year, which was definitely really hard. [00:48:00] Winter here. Very like see her. And I was like fresh off treatment.

[00:48:06] Like really not doing well, but for me, like I mentally needed to do it. Like I needed something to wake up every day, do like go run three miles. So, and it's not like I had never run before. Like I had a run. You know, career. So like I could get back to it. I wasn't like learning how to do that. So I don't see the inspiration, just going to try to do something I enjoy doing.

[00:48:31] Like, if you enjoy crafting or if you enjoy whatever going out on a boat, this is just something I enjoyed to do. And so for me gave me a lot of structure in my day, which was. So that was really hard. And I got a lot of attention just in like local media about like cancer patient runs marathon through snow lob lab.

[00:48:50] And I was like, did you then donate to like Brigham and women's hospital? And they're like intensive thyroid research because that's where I go now, [00:49:00] because it's the only place around here that deals with complex diary cancer. Because if you have celiac disease, you have thyroid cancer. You will absolutely have problems.

[00:49:10] Nobody talks about that. And it is so confusing and I definitely had problems before I ended up at Brigham and women's, and it's just like, it's like with the pink washing, it's like, that's great that you gave me PR, but like, could you donate?

[00:49:23] Helen: Yeah. Yeah, yeah. It's really, really frustrating. Yeah. For sure.

[00:49:29] As you read something, they've done some research into that fatigue after chemo, because I don't think the, I mean, the oncologist always tell you, oh, you'll be fine. It'll be fine. But it's, it's not, it's really not. And that, you know, even though you might be exercising again, you know, you might be going for it.

[00:49:48] Like for me, I do a lot of walking now that's my sort of path back to, um, you know, doing other things. But I couldn't understand why isn't this giving me more energy. Like they said[00:50:00]

[00:50:05] it died. It got notes.

[00:50:08] Julia: Yeah. Like when I started getting back into more competitive endurance racing, like this year, when I was like, okay, this is the race I'm going to do. I had been planning to do this. Before I got diagnosed before the pandemic, I was signed up for it last year, but it all got canceled and whatever.

[00:50:25] Anyway, I was like, I'm going to do it. This is going to happen. I can do it with cancer. It'll be fine idiot that I am right now. I was like, I'm going to do all these things. And I got a coach and I like explained everything to her. And she was like, okay, we're going to do a really. Good training program around like you and your health condition.

[00:50:42] And she's amazing. Right? She was like, very understanding of like, you can't push me harder than X, because like my heart rate can't go over a certain amount and like all these things. Great. So like, I really was like, this is what's going to happen. And in my brain at the time, I'd since corrected my thinking, I was like, [00:51:00] I need to get back to the speed I used to be at.

[00:51:02] Yeah. I don't think I will ever get back to this view that you see. It's not, I don't think that body exists anymore. That body that ran that speed. Didn't nobody had a thyroid. Nobody didn't go through radiation about two years younger. Right. And now I have lymphedema so that body can flush out the inflammation, you know, like I can't, I don't have that anymore.

[00:51:27] So now I have two bum knees and I'm an endurance athlete. So. I think you just have to give yourself a lot of grace. And then the other part of that is you have to remember those. The doctors don't know everything. They just don't. There's no way. And I had to like piece together a care team. Like I switched where my care was.

[00:51:50] And then I, on top of that found additional care people because I was like, okay, you're a great new endocrinologist at Brigham. And women's, you're fantastic, but you've [00:52:00] never had cancer. And B you only study thyroid cancer. And you don't understand kind of the complexity of all of the other things I have, not just celiac.

[00:52:10] So luckily my sports medicine doctor, who I've been seeing for more than 10 years, she's a cancer survivor. And she works at the same hospital system treating like the bodily effects of cancer patients. Yeah, I'll help you. She's like, I'll see you at the cancer center and we'll deal with your lymphedema and I'll get you into oncology PT, and I'll get you all the secondary services.

[00:52:35] And I was like, sounds good. I'll just, I'll figure this out. I'll just, I'm not going to wait for somebody else to figure this out for me. So, yeah. Yeah. But if I had just only done what my endocrinologist, since then, I just, I.

[00:52:51] Helen: Excellently. Oh yeah. I feel I could talk to you forever.[00:53:00]

[00:53:02] Julia: I love it.

[00:53:06] Helen: Thank you so much for sharing your story. I just, I sometimes feel like people I interview as. It's always quite timely because I, I feel like I've needed this reminder of yeah. Things change. And actually it's this sort of switching that mindset and yeah. And remembering, she just have to find your people sometimes.

[00:53:28] And. And that's what gives you that sort of, yeah, that relief. I think of the, oh, okay. That shot I can go on with my day now and

[00:53:39] Julia: exactly. Yeah. I think ladder now I'm not like, you know, I'm not, not trying. I'm not, I'm not that I am actually doing a good job.

[00:53:48] Helen: Yeah, absolutely. So thank you. Thank you so much for sharing.

[00:53:53] Julia: Thank you for having me. This is fantastic.

[00:53:56] Helen: Thanks so much for listening. This thing is every Sunday [00:54:00] at 11:55 AM on Auckland 1 0 4 0.6 clinic. And any time it ducked up, doc clinic, audio.org dot indeed slash the secret.