S1Ep6 Teamwork makes the cancer suck less

Welcome to the sixth episode of Care Partner's Compass: Navigating CRC where I talk about the importance of a team of... teams?

It's so difficult to go through CancerLand by yourself - as a stage 4 patient, or even as a care partner. In this episode I talk about the importance of a good medical team (local and when you get multiple opinions), the importance of oncology nurses and all of the techs and phlebotomists and staff that work at the cancer centers, supportive teams, and a team for the care partners. We need people to talk to, to do fun stuff with, and to listen to us. Those people might change over time. It's never too late to start or join a team.

Full transcription can be found on the website (http://carepartnerscompass.transistor.fm)

Host, producer/editor, and composer: Elsa Lankford

Kristine - by the time this goes live, we'll know what the next step of the plan is. You're incredible 💙

Please remember to share, subscribe, like, and rate the podcast.

Helpful links related to this episode:

• colontown.org - If you or your loved one has colorectal cancer, you'll be able to meet some great people here.
• MSK Integrative Medicine at Home - This has some great exercise and meditation programs for patients and carepartners online. It's just $20/month and Kristine uses this for probably 5 classes per week.
• Wellness House (Chicago) - Free in-person (if you're in/near Chicago) and online art and exercise programs for people with cancer.
• Hirsch Wellness Network - Free online and amazing in person (if you're in North Carolina) art and exercise classes.
• NCI Cancer Centers - for stage 4 cancer, if you are in the US you will want to at least get a second or third opinion, if not have your care go through a NCI center.

• (01:36) - Medical support team
• (02:52) - The importance of multiple opinions
• (04:06) - The patient is the captain
• (04:53) - Kristine's medical team
• (06:03) - The medical team isn't just the docs (spoiler alert: oncology nurses are incredible)
• (07:16) - Supportive team
• (07:36) - #TeamKristine
• (08:48) - Team members are going to fluctuate over time
• (09:01) - People don't understand stage 4 cancer, especially stage 4 CRC
• (10:41) - Supportive team members can come from all over
• (11:28) - Some helpful things that supportive teams can do
• (12:40) - Don't assume people affected by cancer want space
• (13:56) - Support team isn't just people you know
• (15:03) - Getting support from others who have had cancer or are still going through it
• (16:07) - Carepartner team
• (17:23) - How important it is to talk, with your voice, not just your fingers
• (18:01) - It's never too late to start or join a team

Creators & Guests

Host

Elsa Lankford

I'm the host of Care Partner's Compass: Navigating CRC, a patient advocate for colorectal cancer, and a care partner to my incredible wife Kristine. I am an artist, composer, educator, and podcaster. I'm a professor in the Electronic Media and Film Department at Towson University.

What is Care Partners Compass: Navigating CRC?

A podcast for care partners, cancer patients, and anybody who knows or loves somebody with cancer, particularly colorectal cancer (CRC). Care Partners Compass is told through the lens of a Stage 4 CRC care partner with occasional guests.

Season 1 will be primarily from my personal experience as a stage 4 CRC care partner. Topics will include diagnosis, biomarkers, clinical trials, second opinions, finding hope and joy, and more.

The podcast trailer is out now. Please listen and share widely.

Logo design: Kristine Dunkerton

Episodes will be dropping in March 2024 - Colorectal Cancer Awareness Month.

If you are 45 and older, or are any age and are experiencing anemia, unexplained weight loss, or other symptoms, please schedule your colonoscopy.

Disclaimer:
This podcast and its content is for entertainment purposes only. The views and opinions expressed by any hosts or guests on this podcast are their own personal opinions.

Reference to any specific product or entity does not constitute an endorsement or recommendation.

This podcast does not contain medical or legal advice. Please consult your medical professional about any medical questions or concerns.

S1Ep6 Teamwork makes the cancer suck less
Elsa Lankford

Elsa 0:01
Welcome to Care Partners Compass Navigating CRC. My name is Elsa Lankford. I am the care partner to my incredible wife, Kristine, who has stage four colorectal cancer. As a disclaimer, this podcast and its content is for entertainment purposes only. The views and opinions expressed by any hosts or guests on this podcast are their own personal opinions. Reference to any specific product or entity does not constitute an endorsement or recommendation. This podcast does not contain medical or legal advice. Please consult your medical professional about any medical questions or concerns.

Elsa 0:47
Welcome to episode six. This podcast is going to be about the importance of a good team. And team can be a lot of things. I'm not a sports person. Well, I'm a little bit of a sports person, but that's neither here nor there. But a team can mean so many things in terms of cancer care and care partnering. So I wanted to go a little bit into that in terms of what I found helpful over these thirty-three months, so far, since Kristine's diagnosis and teams can be medical, they can be support for the patient and they can be support for the care partner as well.

------ Medical support team ------ 1:37

Elsa 1:37
So in terms of the importance of a good medical team, With stage four colorectal cancer, probably the main contact is going to be with the oncologist. The oncologist is going to know chemo ideally specializes in colorectal cancer or at least GI Gastrointestinal. cancers. Maybe the oncologist knows immunotherapy, And other specialized medicines for particular mutations or biomarkers. and they might also know the trials that their cancer center runs. I think we got a little bit spoiled because Kristine's oncologist has been incredible, very communicative and forthright with information while still maintaining optimism and will be ready to answer a number of questions. Because as I have been learning about colorectal cancer, he is a person that I can ask questions about how some of this information might pertain to Kristine. And he has always been very kind about me asking questions.

------ The importance of multiple opinions ------ 2:52

Elsa 2:52
But I realize that not everybody is as lucky with their oncologist for multiple reasons. you're going to hear me say it so many more times than I've already said. But second,third , fourth opinions are so helpful. Even if you completely trust and like your oncologist, and that's because stage four cancer might be mainly about chemo. Which is the standard of care for stage four. But I hope that every oncologist can consider situations where chemo is a bridge to a procedure, to a trial. And part of the reason for that is there's just not enough lines of chemo for stage four colorectal cancer. And that sucks. I mean, that more than sucks. and cancer is smart, so hopefully chemo can be A bridge to something else. So there can be a break from chemo. So whether that be a trial, a procedure, something.

------ The patient is the captain ------ 4:06

Elsa 4:06
if we think of a team as having a captain of some sort, then, the captain should be the patient. And then now, beyond my sports knowledge, the vice captain should be the oncologist. And then hopefully there's a supporting team of other doctors. So that might be surgeons, radiologists it could be at a start, the tumor board of the cancer center where other doctors see the scans, hear the story of the patient and come up with a plan. having more eyes on a person's case is just so important.

------ Kristine's medical team ------ 4:54

Elsa 4:54
So there's going to be a local team. And then anytime you get second opinions, those are going to also be added to the team. So in terms of Kristine, she has her oncologist, she has her liver surgeon, her colon surgeon, her interventional radiologist who did the protons. She's had another surgery, which we haven't talked about for her ovary.

5:25
Sometimes parts of the team are going to go to other hospitals and then hopefully a replacement doctor will come in. But also every time that Kristine has gotten a second opinion, some were liver therapy related, some liver procedure related, some were clinical trial related. But these are all other people that, you know, might be seeing the scans coming up with ideas. Maybe they'll be aware of clinical trials at their cancer center.

------ The medical team isn't just the docs (spoiler alert: oncology nurses are incredible) ------ 6:04

Elsa 6:04
And it would be just wrong to be talking about a medical support team without mentioning the medical personnel that we end up seeing the most that start with the oncology nurses Kristine's chemo and infusions have lasted between 4 hours every other week to close to 7 hours. Not that the oncology nurse is in the room the whole time, but not only are they such nice people, they're there as an additional level of medical support, but also in some sense emotional support, because some of them you'll see, you know, every other week and they see the ups and the downs There's also the phlebotomists, the techs. There's somebody at Kristine's cancer center that greets us And you can't help but smile when you see him. It really helps to have people that not only know what they're doing, but that are compassionate.

------ Supportive team ------ 7:16

Elsa 7:18
So there's the official medical team around the patient, and then there's the supportive team around the patient. you know, still using the captain analogy or whatever, that will probably be led by the care partner.

------ #TeamKristine ------ 7:36

Elsa 7:36
So we have, for instance, Team Kristine, which is friends, family members, people that are invested in Kristine's journey and in being there to help her in, you know, different ways. So some of that is, you know, just making sure that we have invitations to do fun stuff, going for walks, going to museums doing art stuff all of these offer times to not think about cancer. And that's really helpful. They also can be supportive in a way to talk about cancer. In the beginning, it was really, really helpful to have people that, sent good vibes and said that they were thinking about Kristine and that that's still so appreciated. There's also, our dance group. That is another way of supporting Kristine because she dances during infusions. She dances with good news. She dances when she's stressed. She dances when she needs to get her blood sugar down. And these are people that are part of the team. They're part of Team Kristine.

------ Team members are going to fluctuate over time ------ 8:49

Elsa 8:49
It's important to understand that members of that team, just like the medical team, are going to fluctuate. People have lives.

------ People don't understand stage 4 cancer, especially stage 4 CRC ------ 9:01

Elsa 9:01
people don't understand. Stage four cancer, which is one of the reasons I'm doing this podcast, not just for Care Partners, but to try to get out there, what it's like to live in cancer land or live through cancer land. And it's not simple. It's not one and done. It's not just surgery and, know, six rounds of chemo and then you worry about it. But there's, you know, smooth sailing and a really good chance of smooth sailing. And that's not to say anything negative about people with lower stage cancers, But people don't know enough about what stage four is like that It has a lot of downs. Hopefully also a lot of ups that there's kind of continuous stress, feelings of helplessness. And hopefully a team can be there not just to give platitudes, but to be there to listen as well. I mean, again, I'm not going to turn down a good platitude, but somebody with cancer and the care partner for somebody with cancer needs to be able to talk to people, whether that be an official, you know, counselor or a therapist or friends and family, som that's there to listen, not to compare with another cancer, not to give very misinformed advice. Just to listen.

------ Supportive team members can come from all over ------ 10:41

Elsa 10:41
We've been very lucky to have people from all different parts of our lives be involved with this support team. These are people from different backgrounds, different educations, different professions, different ages, people from Kristine's, former work, a couple of people from my work, friends, neighbours, family members, people that we've been meeting through life or through cancer life that have climbed on board. And some people stay for the long haul and some people come and go and that's why it needs to be a team because it's really hard to count on one person. Because you need to be fair to that person also.

------ Some helpful things that supportive teams can do ------ 11:29

Elsa 11:29
some examples of some things that were so helpful for us that TeamKristine, people did for us was to get groceries, especially when Kristine was just diagnosed for a while. After that, we were hitting some peak COVID times and did not feel safe going into crowded places and people would get groceries and bring them to us. there was a good friend who would bring dinner on chemo days. People would send cards and flowers. They'd send, you know, good luck texts and messages before chemo and and scans. They would make plans with us and they'd be super flexible because, depending on what Kristine was going through, she might be either very immunocompromised or, have certain limitations to where she could be or where she could go. And cancer makes scheduling really, really hard Kristine has a good friend from her hometown who checks in with her every night.

------ Don't assume people affected by cancer want space ------ 12:40

Elsa 12:40
If you're listening to this podcast and you or your loved one don't have stage four cancer, then remember that there is this really important role that you can play in somebody's life, that there's this whole support team. It really takes a village and both the patient and the care partner need support. Don't assume that people in cancer land want space. Send them a ping and say that you're thinking about them. And if you don't hear back, wait a little bit and send another ping. Because there's just so much that happens with cancer. People may not have the bandwidth or the the mind and heart space to be able to talk. give them some time. But don't give them all the time. If you don't hear back from them, ping them again, because they probably are going to want somebody to listen at some point or to distract them to do something fun so that they can get a break from this crazy cancer world.

------ Support team isn't just people you know ------ 13:57

Elsa 13:57
So I had Kristine listen to an early version of this, and she wrote a lot of notes as she normally does, But on her support team, she also put things that I wouldn't have thought of putting. But she's very smart, so it makes sense to add these as well. The support team isn't just people, and it's not just people that you know. It's people that maybe you don't know yet. So there can be exercise classes, art classes, support groups. Some of these she does herself, some I do with her, like different art classes. And they're not just for distractions. They're not just to give her some structure and a schedule, but they're so that she can meet other people and have this more general support for her mind and her body.

------ Getting support from others who have had cancer or are still going through it ------ 15:03

Elsa 15:04
just as I as a stage four care partner get support from other Stage 4 care partners. Kristine, as a stage four cancer patient gets support from other people going through cancer as well. Maybe they have stage four colorectal cancer, or maybe it's a different stage and a different cancer. I don't know what it feels like and they know what it feels like both to have cancer and to go through treatment and surgery. whether it be through an official support group by the cancer center or online to a number of cancer organizations. Or if it's one on one conversations or texts. And that can be support in general or support about what the effects from a certain chemo line were like or what a surgery was like, To get a first hand look at what to expect.

------ Carepartner team ------ 16:08

Elsa 16:08
that's important to have a team for you as a care partner, Because Kristine already has so much to deal with. I need people to talk to as well. I need some people that are supporting me. And what I've found is really helpful is talking with other stage 4 care partners. The problem is they're also going through stuff. Or if they're not going through stuff, then I'll admit that there is a feeling of unintentional jealousy on my part. But somebody that knows what it's like is really helpful. And then you can listen for them as well. having people that you can confide in that maybe understand some of the medical and science stuff. Especially in the beginning, I found that really helpful. There's probably a couple of people listening to this that are like, Yeah, you still you still bug us.

17:14
But it is really helpful to be able to talk about the good and the bad with somebody else.

------ How important it is to talk, with your voice, not just your fingers ------ 17:24

Elsa 17:24
And I've been talking about talking like on the phone in person. there's obviously some really helpful social media sites where people can be helpful there as well from their experiences. But I have found personally that especially from a stage four care partner point of view, sometimes I just don't have the bandwidth to help and be there for too many other people. I have needed to find my own limits with what I can deal with.

------ It's never too late to start or join a team ------ 18:02

Elsa 18:02
as a stage four care partner, you already have a lot of responsibilities, a lot of feelings to deal with, a lot of everything Your loved one has even more. That's why it is so helpful to have these teams around you and if you don't have one yet, it is not too late to start. And if you have one then keep inviting more people in because people have lives and the team is going to change over time. So keep inviting new people in. They don't have to be there from the start, but they can bring a new perspective. Cancer is a lot to deal with. It makes it so much easier to deal with when there's a team behind you, especially when there's multiple teams.

Narration 19:04
Thank you for joining me for this episode of Care Partners Compass: Navigating CRC. Please listen up for the next episode, which will come out next week. If you subscribe to the podcast on your favorite podcast app, you will know exactly when the next episode comes out.I hope that you'll share the podcast with your friends and family. The transcript of Care Partners Compass: Navigating CRC and additional links can be found on our website

19:39
Carepartnerscompass.

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