Episode 19: Have You Tried Essential Oils?
Humans are wired to solve problems, and when someone they love has cancer, they can sometimes get a little… bossy. From smoothie detoxes to essential oils, people with cancer have heard it all when it comes to unsolicited advice. On today’s podcast the sisters look back with a bit of laughter at the wacky opinions Ella heard during treatment.
SHOW NOTES
Sources and Further Reading:
“The Summer Day” poem by Mary Oliver, which we quote by referencing “one wild and precious life”
Next week we’ll be doing a book report on “Between Two Kingdoms” by Suleika Jaouad
TRANSCRIPT
Kayla 0:09
You're listening to the My Sister’s Cancer podcast. I'm Kayla Crum, registered nurse and writer.
Ella 0:15
And I'm Ella Beckett, social worker and cancer survivor.
Kayla 0:20
We're sisters on a mission to care for the cancer community through the sharing of real life stories, a sprinkle of sass, and lots of support.
Ella 0:28
Join us in a new kind of pity party. It's a pity so many of us carry the heavy burden of cancer alone. So let's make it a party and carry it together.
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Kayla 0:42
Welcome back to the My Sister's Cancer podcast. I'm your host, Kayla Crum, here with my sister, Ella Beckett. And we're so glad you're joining us today. Before we jump into today's topic, which is unsolicited advice, we wanted to remind you that rating and reviewing our show is a great way for us to reach new listeners. On Apple Podcasts or Spotify or wherever you listen, there should be an option for you to give us five stars or write a little review. And the more people that do that, the more our show will come up in people's searches when they're looking for a cancer-related podcast. So if you enjoy the show, it would mean a lot to us if you would take a minute - it doesn't have to be long, just a sentence or two - and write a review of the show so that other people can find it and benefit from it as well. So today we are going to cover unsolicited advice while you're in the treatment phase of cancer. Everything from advice on your body to your future life choices sometimes gets thrown at you during this incredibly difficult time where you probably don't need your acquaintances’ advice without asking. So, Ella, I feel like you're probably, unfortunately, a bit of an expert on this. Why don't you tell us about it?
Ella 1:55
Yeah, so I think when you say unsolicited advice, specifically in the treatment phase, what first comes to mind is when I was first diagnosed, there were people who gave their opinions on things to try or directions to go. And I think we've alluded to this on a previous episode, but people, you know, suggesting things like, oh, well, if you just do this smoothie detox and these things, then like maybe you can avoid having to do chemo or, you know, have you tried these essential oils that if you just rub them in the right spot for a certain amount of time, then like you'll be cured. Now, I want to preface this by saying that our intention is not to just like, completely bash holistic or alternative medicine, because I do think there is some value for sure in a lot of those things. But I think it's just difficult when you're handed this diagnosis, you really don't know what's going on or what the treatment is going to look like. And then you have all these people in your life who, whether they do have some experience with an illness such as cancer or they don't, feel the need to insert their opinion on what might work well for you and could possibly cure your cancer.
Kayla 03:29
I think people mean well. I think people are scared deep down and like, want to be in control. Right? So maybe there's someone who's really into essential oils or smoothie detoxes and they feel like that's keeping them healthy, et-cetera. And so if I keep it out here, it can't happen to me because I'm doing this health and wellness journey type of thing. Which if they really sat down and thought about it, that's kind of an insult to the person with cancer. Basically saying like, “Well, if you had only done my wellness program, like, you wouldn't be here in this situation.” I don't think they always mean that, but that is sort of the underlying message. And it's just really infuriating to have people who have no medical training - or even like official complementary medicine training - try to tell you what they learned on a blog or, you know, what worked for their great aunt Hilda, as we've said on previous episodes. Something that I see a lot on the Internet is people saying that sugar feeds cancer cells, and that a lot of people get told during cancer not to eat sugar. Have you experienced that at all? I was a little surprised by that when I started joining these cancer communities online.
Ella 4:46
Oh, I’ve definitely heard that. Yeah. And I remember like, pretty clearly - I don't think people, like, explicitly said that to me when I was going through treatment or when I was newly diagnosed. But I do have, like, this vague recollection of me realizing that and like, trying to be conscious of like, what I was eating, which can also, you know, be very harmful if you like, lean too much into that, completely cutting out sugar or anything like that. But yeah, I mean, I think what you were saying earlier made me think too, of like there's the whole question of like, well, how did I get cancer? Right? And so I think sometimes, like some of this unsolicited advice would like, bring that up in me. Like, was it something that I did, like, did I ingest chemicals that I wasn't supposed to or did I, like, we've mentioned before, the example of like, I went to a tanning bed a few times, right? And it's like, no, it wasn't skin cancer. But of course, your brain kind of goes there. And then when you're having these people kind of saying, you know, well, if you just did this or have you tried this, like you were just saying, it almost makes me feel like, oh my gosh, like, did I do something wrong? Have I not been doing these healthy things? Like, was I not taking care of myself? It's really a windy, not healthy path to go down.
Kayla 6:08
I'm guessing most of the people that gave you advice had not actually had cancer themselves, right?
Ella 6:13
I would say that's correct, yeah.
Kayla 6:16
Because I'm sure there are complementary medicinal options that have helped cancer patients. And we're going to talk about some of those in a minute. But the vast experience from Ella and from other cancer patients we know and survivors is that people just come out of the woodwork to tell you how to fix it. And they aren't cancer survivors and they aren't medical people. As if you haven't consulted with a doctor and like, really thought hard about your treatment options, you know? It's almost insulting to be offered these quick fixes when you're doing your best to make the best decision for your health. And it's overwhelming and you're trying to trust the experts and maybe you've even gotten a second opinion from another doctor. As if you didn't give thought to how best to take care of yourself. It's just insulting. Did you receive any advice from your medical team that felt a little bit like this? Not necessarily complementary medicine, but maybe from the social workers or the PT or whatever that felt sunshiny or impossible? Or was that not really something that you dealt with?
Ella 7:25
Do you mean in general or like specifically related to treatment options? Like are you saying just unsolicited advice in general?
Kayla 7:34
I guess in general… one memory that came to mind for me is, I mean, granted, you were taken care of in a children's hospital. But you had to stay hydrated, and one of your nurses treated you like you were about ten years younger than you are and - I don't know, you had some sort of water bottle or something. And she said, “Oh, if you drink it out of this water bottle, that'll make it more fun!” or something like that. And it's just like, she was trying to motivate you to drink water and like, tell you “You need to have six of these a day! How fun!” Like, something really crazy. I was like, she's 19, but okay.
Ella 8:10
[laughter] Yeah, I think that's a really good example of it. I'm trying to think if there were any other standouts, but I mean, again, I feel like even in those situations, I just have to remind myself that like, my care team wanted what was best for me. So even if it came across as like, condescending or just like, eye-rolling, at the end of the day, like, they were just trying to take care of me, you know? In that moment, I was not thrilled, but she was just trying to get me to drink water.
Kayla 8:47
Read the room, though, right? Know your audience. You're very kind. I think sometimes I'm more frustrated on your behalf and you show more grace in hindsight. Something I wanted to ask you about, too, is medicinal marijuana. When you went through cancer, marijuana was not yet legal nationwide and not in Michigan. Medicinal was, but not recreational. And I guess I'm wondering if people brought that up to you. My understanding is you never had any. But I'm just curious if that had a role even in like your support groups or things like that. Is that a hot topic among cancer patients? Because you hear it in the news about, you know, being a great pain thing for cancer patients. That was really one of the points they pushed when they were trying to legalize it. And so I'm just curious what your experience was with that.
Ella 9:44
Well, it's funny you say that, like as I'm thinking about it, no, I never myself tried it and really didn't talk to many people about it at all. I mean, I don't even think it was really on my radar. But when I was first exposed to it, I was actually inpatient. Mom and I were watching the show “Parenthood,” and one of the characters gets cancer. Of course, as we’re -
Kayla 10:13
[laughter] You’re like, why? Why?
Ella 10:16
[laughter] As we're inpatient receiving cancer treatment.
Kayla 10:18
Cool.
Ella 10:19
That makes sense. But anyway, so she used, I believe, medicinal marijuana. And I was like, oh, wow. Because she had talked about how like, it really relieved her nausea and like some of her symptoms. And it was just so ironic that I'm like laying in a hospital bed, like experiencing those symptoms and like first being exposed to that. But even after that, I didn't then walk away from that show and think, Oh, like maybe this is an avenue I want to pursue. Yeah, it wasn't really, I guess, on my radar so much.
Kayla 10:49
Yeah. I'd be curious to hear from any listeners who have used it what that experience was like. If there was stigma for you or how you went about approaching that, did your doctor ask if you were interested or did you have to bring it up? I wonder now too, because it's recreational, if a lot of people are just using it without necessarily involving their medical team, which can be, I think, dangerous if you're not letting them in on that knowledge. I think it has a place. Especially when you get into, like, bone cancers and things that have excruciating pain. Different types of cancers have different, you know, pain levels and areas. And so I think it's probably more useful in some situations than others. But I'm curious now that it's legal, if that's become an issue on either the nursing side or the patient side, I'd love to hear from any listeners if they've had experience with this. I do want to mention too, there is some evidence - and we'll link up in the show notes - but for complementary medicine in general. They used to call it alternative medicine, and I think we're moving towards calling it complementary, meaning you don't have to decline chemotherapy to also engage in something like acupuncture or meditation and yoga, things like that. And I do think that there's something to be said for not just doing one or the other. There's some literature out there that doing Tai Chi and meditation can actually make your blood cell counts go up. If you're working on that de-stressing and lowering that blood pressure and all of that with deep breathing, getting a lot of oxygen in your body, it can actually improve your cell counts. You know, not a crazy amount, but the people in the control group didn't have as high of counts as the people who were working on this. So I just find that really interesting and I do want to hold space for that. This episode is not meant to “poo poo” any complementary medicine at all. There's some that has more evidence than others. I will say I don't think there's much out there for things like hallucinogenic drugs or essential oils. But yeah, there is a place for the sort of complementary or alternative medicine for sure. I guess one thing I'm wondering that's less physical is if you got a lot of unsolicited advice about - I mean, your hair is physical, but your hair, your life choices, as in pausing college, not pausing college, what you should study. I just feel like cancer adds a layer on top of the already sometimes weird pressure that you get from adults in your life to make certain decisions. And so I just wonder if people ever - and this might be more in the survivorship stage, but - you know, said, “Oh, how are you going to use your journey in your career?” Or like that kind of advice or pressure maybe more than advice. Does that resonate at all?
Ella 13:47
I mean, I can't really think of a lot of examples where people outright said that to me in those words or like, used that language. But - and again, like you said, this is probably something we'll touch on even more when we get to more survivorship topics. But once you've survived cancer, or like, you're coming out of your treatment phase into remission or just stability, whatever that looks like for you, there's just like this immense pressure to like, do something so meaningful with your life because it's that whole like, what is it that you're going to do with your “one wild and precious life?” Yeah. And like, yeah, that's amplified like times 100, like, when you have cancer. I just feel like then when you are like, bridging into whatever your life looks like on the other side of it, it's like, oh my gosh, like, I almost just lost my wild and precious life. Now I really have to do something with it. But I think a lot of that for me was just like, internal feelings and pressure. I don't think I necessarily experienced a lot of advice, so to speak, on what to do next.
Kayla 15:00
I definitely have heard that cancer patients face a lot of internal pressure, feeling like they need to be an inspiration, right? As if surviving cancer wasn't inspiring enough, then you're supposed to go on and make a foundation or like run 5Ks or something. Just becoming an accountant or something like, isn't it inspiring enough for kids or survivors. [laughter] And so I do - I feel like there's that cultural pressure to turn your story into an inspiration, which must be kind of hard to carry sometimes. Ironically, I guess it's kind of what we're doing with this podcast. We're turning your story into something that we hope benefits others. So I don't think that inclination is completely wrong. Making meaning, right, is important when we go through trauma and suffering. Giving back doesn't have to be a component of that, but often is. And this has been studied by social workers and psychologists, that making meaning and giving back are key to moving through trauma. So I guess we're a little bit tongue in cheek because that's kind of what we're doing with this podcast. But -
Ella 16:20
Yes, I took my one wild and precious life and I became a podcaster on the side.
Kayla 16:28
There you go. But, I guess my point is, if you hadn't and if you never wanted to talk about your cancer experience with anyone again, you know, other than a therapist or your husband or something, that would also be okay.
Ella 16:40
Totally.
Kayla 16:41
Not every cancer patient has to turn into a public inspiration.
Ella 16:45
Preach.
Kayla 16:46
But there is a cancer patient who is a public inspiration. I mean, there's many. But the one we're thinking of right now is Suleika Jaouad. I probably mispronounced that name and I apologize. But why don't you tell us about her book and what we'll talk about next week?
Ella 17:04
Yeah so she wrote a book called “Between Two Kingdoms,” and it's her memoir. She was diagnosed with, I believe it was leukemia. And she had just graduated from college. And the book really just chronicles a lot of that time. And we'll get into more details next week. But we just resonated with a lot of what she was saying and we're just excited to unpack some of that with all of you. So have a great week and we will talk to you soon.