Season 4 Episode 4: Through the Distance: Navigating Care from Afar

GOSH Podcast survey:
https://ubc.ca1.qualtrics.com/jfe/form/SV_9vJ2Jt3Mr6OPJBk

In our previous episode, we heard from Amanda’s mother, Anita, who told her story of her ovarian cancer diagnosis. Today we will hear from Amanda, a beloved daughter and one of Anita's caregivers. 

Amanda is a Registered Massage Therapist with nearly three decades of experience in her field. She is happily married and the proud mother of a 15-year-old son. Her family extends beyond her immediate household, with a younger sister residing out West near her mother, Anita. However, Amanda's journey has also been marked by loss, as she lost her older brother in 2016 due to a heart-related condition. 

Today, Amanda will share her perspective as a caregiver and a loved one, shedding light on the journey that came with supporting a family member through a gynecologic cancer diagnosis.  

Anita’s TikTok: @tastyentertaining 

https://www.tiktok.com/@tastyentertaining  

Anita’s Instagram: @tastyentertaining 

https://www.instagram.com/tastyentertaining/  

_

For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at info@gynecancerinitiative.ca  
 
Where to learn more about us:  
 
Twitter – @GCI_Cluster 
 
Instagram – @gynecancerinitiative 
 
Facebook – facebook.com/gynecancerinitiative

Transcript

SPEAKERS 

Amanda Wright-Evans, Almira Zhantuyakova 

SUMMARY KEYWORDS   

Patient Caregiver, Family experience, Ovarian Cancer, Gynecological cancers, GOSH podcast 

Intro: Thanks for listening to the GOSH podcast. GOSH stands for the Gynecologic Oncology Sharing Hub, an open space for real and evidence-based discussions on gynecologic cancers. We'll share the stories of gyne cancer patients and survivors and hear from researchers and clinicians who are working behind the scenes to improve the lives of people with gynecologic cancers. Our podcast is produced and recorded on traditional unceded territories of the Musqueam, Squamish, and Tsleil-Waututh Nations. It is produced by the Gynecologic Cancer Initiative, a province-wide initiative in British Columbia with a mission to accelerate transformative research and translational practice on the prevention, detection, treatment, and survivorship of gynecologic cancers.   

Hi, I'm Nicole Keay, and I'm Stephanie Lam and you're listening to the GOSH, podcast. 

00:00:02 Almira 

OK. Hi everyone and welcome back. Today we welcome Amanda Wright on our previous episode we heard from Amanda's mother, Anita, who told her story facing ovarian cancer diagnosis.  

Today we will hear from Amanda a beloved daughter and one of Anita's caregivers. Amanda is a registered massage therapist with nearly three decades of experience in her field. She's happily married and a proud mother of 15-year-old son. Her family extends beyond her immediate household with a younger sister residing out. Just near her mother and Amanda's journey has also been marked by loss as she lost her brother in 2016 due to heart related condition. Today, Amanda will share her perspective as caregiver and loved one, shedding light on the journey that came with supporting a family member through gynecologic cancer diagnosis.  

Amanda, thank you for joining us today and welcome. 

00:01:04 Amanda 

Thank you for having me. 

00:01:06 Almira  

Yeah. So, we talked to your mother in the last episode, and we heard how she about her journey with ovarian cancer and I was wanting to hear from you, how was it for you personally when you first heard learned about your mom's diagnosis? How did you feel? 

00:01:31 Amanda 

It was difficult, one being that I'm very close to my mom and we had not really had a family history of cancer and she's living in Vancouver and I'm here in Toronto, so that posed already as soon as I heard the word cancer, I knew that we were going to have a rough couple of years potentially. 

00:01:53 Almira 

Yeah, I see. What would you say your role was throughout Anita's cancer journey and did it change throughout the experience. 

00:02:06 Amanda 

Yeah, it has. I mean, Mom and I are very close and as my sister. We speak every single day or every couple of days anyway. I just made sure that we were connecting daily so I could get an idea of what was going on. And it was really important for me to or has been very important for me to FaceTime her as often as I can. Because particularly being in the healthcare industry, you learn certain signs when you look at somebody visually, you can tell whether they're not well or not. So, it's sort of just gave me a little more information about how she was feeling day-to-day by kind of looking at her face. I, you know, have an extensive background for medical in as far as social therapy goes. So, I was able to connect with colleagues as well that were in the medical field that were able to give me some more information that I was potentially able to help her kind of knew sort of, that we had to be pretty persistent in making phone calls to get her into the Cancer Center and was very impressed with speaking to anybody that had to deal with cancer in what I felt like a different type of people. They were very kind, very receptive and very willing to help. Yeah, it's it hasn't changed necessarily other than I would say, maybe even connecting more and more every day than I probably would have with her just to check in to see how she's doing, see if I can offer any help in any way. 

00:03:44 Almira 

So, do you feel like your relationship changed throughout the journey? 

00:03:49 Amanda 

No, I think. It just got even stronger. I mean, we've always had a really great connection and always been really, really close. She and my sister and I, we're sort of know what each other is thinking before either one of us say anything and tend to pick up the phone and call one another automatically. Just kind of at the same time. So, we've always been super, super close, just that the distance has been hard. I have had to take some time off work to go out during sort of some of her, like initially when she was first diagnosed, I went right away the very next day and spent as much time as I could with her until we kind of got her back home and organized. And then I went back out again for her surgery, and then I was out again this summer to combine a visit and to and for my sister's birthday, and now we're just waiting on what's next for her journey. So, it's been a little bit of having to juggle with my husband, you know, taking on more of a prominent role in driving necessarily my son around or getting to or from if he was working vice versa like he was. He's doing all of it when I'm gone. 

00:05:02 Almira 

Mm-hmm. Yeah, that's great. That's such a blessing to have good relationships with your family. Yeah, and it seems like it takes a village to like, it's not only you, as her daughter, it's your son and your husband that had to accommodate and show support for you and the new mother, that's great. As you mentioned, you were in medical field as a massage therapist. You mentioned that a little bit, but I was wondering maybe to dive deeper into that. Did your professional background influence the ways in which you provided care or could you share any techniques? 

00:05:47 Amanda 

I would say that I had a really good understanding of anything to do with the medical reports, medical conversations. Just because of knowing all the terminology and sort of being very familiar with it, I have treated I'm in a multi-disciplinary practice now. So, I sort of see all sorts of different people, but have treated people who have had cancer treatment or gone through cancer. And I work with a chiropractor that has close family that are oncologist. So, I was able to reach out for a few questions to be answered here and there. It was easy for me to jump on any forums and sort of understand what people were talking about. Based on having the medical background that I have as a massage therapist. I haven't had the opportunity to use too many techniques on her just because she's in Vancouver and I'm here in Toronto. But when I did, Sierra would sort of give her some gentle massage techniques that she was able to handle just to make her feel a little bit better. But I was also able to sort of look at, like any of her wounds to her dressings or anything like that, and sort of say, OK, yay, I think, you know, I know what to look for here, that we should go get this looked at or if her symptomology she wasn't feeling very well. She had a temperature sort of went to sort of push for more care, I would say. And maybe help my sister and I sort of chat about a little more all three of us kind of come to sort of decisions on what we thought would be the best for her, also because having been in the industry of massage therapy, the healthcare field I may have heard some of the things that going on and would be able to say, OK, well, I have the client that said this and this was their response, so I was able to give her a little bit of feedback here and there. 

00:07:35 Almira 

Yeah, that's great. Sometimes I feel, yeah, it's hard for. It's so much so much terminology that like comes to you when you're in the age and you need to make sense of it. And having someone in the medical field who could help you make sense of it, it's really good. It's really nice.  

00:07:56 Amanda 

In addition, sorry, I was just saying in addition to reading her blood test reports, not that we study any of that in massage therapy or that it's necessarily in our scope of practice, but we would get some case histories here and there that would have a sort of like look at some of those things and be a little more aware of what's going on. If you're not interested in the medical field, something you would normally look at as your numbers and what was going on. 

00:08:28 Almira 

And you probably know where to look for the info as well, rather than more reliable sources. And yeah, and the networking part is also really great to be able to like to connect with oncologist and yeah, gather the information. That's really great. Yeah, as I mentioned, in 2016, unfortunately losing a brother an older brother is a profound loss and I was wondering, how did that experience, if it at all influenced your approach to caregiving and support of your mom? 

00:09:10 Amanda 

Well, with my brother. Unfortunately, it was so sudden we didn't know. So, I mean, when you have a sudden loss, he just didn't wake up one morning. It actually is harder on the people that have been left behind than obviously him. He potentially died peacefully in his sleep. However, that left a, you know, very difficult to challenge for us to get through. So, when we found out about mum's cancer diagnosis, of course your mind goes right away to that, uh, oh, here we go again. However, I don't know if you can ever really prepare for these things other than just go through connecting with everybody to find out. OK, you know, if this is going to come to an end at some point, what are the things that we need to do or want to do or what are your wishes or what are the things that you want us to know while you're going through your care, whatever it may be. So, I don't really say that they can prepare you. it's just a different type of loss, and moms in particular. Because initially when she was diagnosed in emergency, when they first told us about her cancer, they actually said that she was unlimited time at that point. So, we kind of had all these conversations and, you know, weren't prepared for them, but did the best we could to go through. OK, you've only got this much time left. What is it that you want? What are your plans for the next little while and didn't really think that there would be care. So, I think there was a bit of a disconnect between the emergency department when they're diagnosing. An individual and getting the individual to the Cancer Center, it seems right now, just from chatting to multiple people, that it's about a four to six week wait by the time you have had your information you've been given to you in the hospital to actually when you get into a Cancer Center or get under like an oncologist care. So that's a long time to wait with the unknown. And so, there's all kinds of emotions they go through during that time. I wish there was a bridge that could go between those two so that both the family and the person that's dealing with the cancer didn't have such a long wait time. But I think that's just the nature of the healthcare system at the moment, being burdened with a you know all these different reasons why our healthcare system is struggling at the moment. And I think that once we got into the oncology center and it was like a breath of fresh air that they said to my mom, we have a plan for everybody that sort of took like a big burden off of our shoulders to know, Oh my gosh, this isn't the end yet. We do have time. So that was a big kind of light bulb went for, I think my sister or my mom and I at that time. 

00:12:05 Almira 

Yeah, it seems like an emotional roller coaster that we went through, yeah. 

00:12:09 Amanda 

And that's but that that is the exact words for this type of cancer cause one minute it's not going very well and the next minute she's rallying. I mean, a lot. I do believe a lot of it has to do with a person's mental health when they're going through this jury and journey. And their support system for sure. 

00:12:31 Almira 

Mm-hmm. Yeah. And a lot of difficult conversations that you had to have is also something 

00:12:38 Amanda 

Multiple times. 

00:12:48 Almira 

 Yeah, one need to be aware of whoever is facing a taking a similar role as you. 

Yeah. And as you mentioned, an emotional well-being of a person with a diagnosis is one part. But there is also a part of the well-being of a caregiver with the right sort of mindset. And I was just wondering what helped you with your mental health during that. 

00:13:12 Amanda 

I think talking about it for me, I mean everybody's different. Some people are quite private, but our family is not that way. And you know, the more I talked about it out loud, the more it sort of made more sense to me. I was able to kind of rationalize it, having a very supportive husband and son and family that I was able to talk to my sister. Talking even through my mom, often just the different ways, you know, crying when you needed to cry, letting it out, just continuing to take care of myself mentally well. So, getting massages myself, health exercising all of the things that you need to do, sort of keep yourself healthy. I'm still as an RT, we're not required to wear masks anymore, but that's another thing that I have kept up since mum's been sick. Because I didn't want there to be a point that I was never able to fly to see her because I wasn't well. So, I've kept up wearing a mask in a small, confined space for when I'm treating. 

00:14:12 Almira 

So, it also entailed like taking care of your own health, like being aware as well. Yeah, that’s great. 

 Yeah. We talked about some strategies and coping mechanisms that helped you and you mentioned talking out loud and keeping up with your exercises and getting massages sort of self-care, not forgetting about your own self-care about your own mental well-being? Yeah, that's. That's something that comes up a lot when we talk to caregivers. And maybe I think I had only one question left to you is maybe do you have any advice for someone who is currently going through a diagnosis or cancer diagnosis of a low? 

00:15:14 Amanda 

I think a couple of things. I think first of all, you do need a good support system, especially during treatment, chemo radiation. If you can ask as many people as you can to help you, whatever it may be, cooking dinners taking you to appointments, waiting in the car where you have an appointment, being there at home for the person when they come back from their chemotherapy treatment, the more help you can get and I think take it, I don't think that anybody should feel badly about taking it because everybody has been touched pretty much by cancer at one point in their life or not, and to have a support system available to you really helps the individual that has cancer. I think get through it a little more easily. It's not, you know, it's not always going to turn out for the best, but the more people you have around you the better it will be and a positive attitude for sure. I know a lot of it has to do with mom’s mental health and her positive attitude that has taken her as far as she has gone. But she's never been a quitter. She's always been fighting her entire life for whatever reason. So, this was not going to be any different challenge for her. She was just going to continue. Nobody was going to give her or is going to give her a timeline and she's just writing every single. So, I think that don't forget to ask for help at any given time from anybody. People often don't want to burden other people, but I think the universe or people are waiting to offer help and often they don't even know what to do to help you. But if you ask. I think that you will receive the care and help that you need. 

00:16:55 Almira 

Yeah. Thank you. Thank you. I think that's really helpful advice not to be sort of not to be afraid of getting care for yourself and for and help. Yeah, that's really great advice that sometimes I think people forget. And yeah, I think that was our last question and I would like to thank you for joining us and giving your perspective. It was really great. I think people will find it really helpful.