Jordan Heath-Rawlings: There’s nothing scarier than a cancer diagnosis, except maybe a cancer diagnosis delivered via video conference in the middle of a pandemic. I mean, imagine the questions you’d have hearing in a normal time that you have cancer and then what – double them, triple them during COVID? And for the normal questions that you’d have after getting the news, there are mostly answers. There are protocols. There’s an entire arm of the medical system that’s dedicated to walking you through this awful time. For the questions you would have about cancer and COVID-19 though, there aren’t really any official answers. There aren’t any protocols. There’s really no precedent for this. If you’re lucky, you’ve got good doctors who try their best, but they’re still trying to figure out the answers too, so what do you do? Well, you turn to others. You can often find them online, but that comes with its own problems.
I’m Jordan Heath-Rawlings and this is The Big Story. Ann Borden is a writer. She’s also the host of a podcast called Noncompliant. Hello, Anne.
Ann Borden: Hi.
Jordan Heath-Rawlings: First of all, I guess, as much as you’re comfortable sharing, can you tell me about your diagnosis? You know, where and when and, and how are you?
Ann Borden: I’m doing okay. I’m going through chemo cycles right now for breast cancer. I was diagnosed with breast cancer in early June, and it was actually better to be diagnosed at that time than a few months prior because everything was really closed down for any kind of..This kind of maybe appointment that I had where I got diagnosed. So I was kind of lucky. Yeah. I got a little lucky spot when also incidence of COVID were low. So I was able to get care pretty quickly. I had to have a surgery. Four days after my biopsy, I got a surgery. So they were starting to push things through again, which was good.
Jordan Heath-Rawlings: What was that process like? I mean, as hard as it must’ve been emotionally and physically, can you just kind of describe, the precautions, I guess, that were being taken in the hospital system at the time? you know, what was your impression?
Ann Borden: There definitely were precautions in place at the time that I was going in. There was, they knew quite a bit more about COVID than they did at the very beginning. So they, for example, many of my appointments that have to do with consultation were over the phone rather than in person as a way to keep everyone safe. The downside of that is that it’s very hard to hear someone telling you that you have cancer and what kind of chemotherapy you need when you’re sort of on the phone and, you know, you’ve got, kids are in the background and their kids are in the background, their dog’s barking. it’s it’s, it’s complicated. When I had the actual surgery, there were many COVID precautions in place as well. I walked down the hall to the surgery theater and they swung the door open and everyone was done up. Like they were at Area 51, you know, it was very, very cautious and careful, lots of PPE. And I do feel very safe, physically, generally speaking, when I’m at the hospital.
Jordan Heath-Rawlings: What about support? You know, I can only imagine that that going through something like that, you would want a loved one, kids partner, friends, you know, holding your hand as you, as you sit there and wait for that surgery and I don’t think that anything like that is allowed right now.
Ann Borden: It wasn’t allowed when I did it. It’s not allowed now during my chemo. And it’s challenging for two reasons. First of all, it’s really nice to have someone with you when you’re going through something like that, just as emotional support. But second, it makes it more difficult to advocate for yourself if you need to.
Jordan Heath-Rawlings: Right.
Ann Borden: Especially people who don’t, you know, necessarily instinctively. Jump in and stand up for themselves, or if you’re really tired or you’re really sick and you’re not, not really sure how much you can ask for or what you really need or whether you should say anything. When you have a second person with you there, for example, when I was coming out from a under my surgery, I had a lot of vertigo and I didn’t have anyone there with me and the nurse came in and I said, I, you know what, I need to talk to a doctor before I go home. This vertigo is really bad. And she said to me, you know, you can’t stay here. You’re going to want to get out of here because otherwise we’re going to have to admit you. And we have COVID in this hospital and you should go home. And that was a really terrible thing to hear, because what you want to hear is you want to hear someone saying, “I’m sorry, that’s happening. And we’re going to help you and find out what’s the matter.” So it was a very, very difficult kind of message. And without having someone there to advocate for me, I ended up just having to sort of stumble outside to get myself home. When I actually ended up having to call the doctor on call and get a medication and things that should have been taken care of in the hospital.
Jordan Heath-Rawlings: Right. And I mean, even when you go in, for non-cancer minor surgeries. in the past they would recommend you have someone with you to help you get home when you’re discharged.
Ann Borden: No, I had to meet my husband outside, waiting at a taxi. And that’s how it goes now. Yeah.
Jordan Heath-Rawlings: What kind of – COVID-specific for now. We are going to talk about a little bit about some of the other things you’ve, you’ve written about, through your fight, but, but still related to COVID, what kinds of, specific instructions were you given? you know, you are now high risk. Here’s what you should do. Here’s what you shouldn’t do. Here’s how to, here’s how to navigate the world, while you’re going through this?
Ann Borden: Unfortunately, basically nothing. And that’s the problem that I’ve really identified. They really don’t talk to you much about COVID. I bring it up and I have tried to ask questions. Of course, everyone’s in a hurry and they want to get you out of there. There’s very much a sense of urgency of getting people in and out, and it makes it very difficult for you to have the kind of more thoughtful conversations that you really need to have, especially during COVID. There’s a lot of different levels of risk to manage depending on each individual. So you need individualized care around cancer, or I’m sorry, not cancer prevention around COVID prevention. so what they should be doing is really surveying each patient, maybe a written survey of…okay, do you have a spouse? Does your spouse work outside of the home? What about your kid? Are they going to the playground? Are they going to school? Are they going to taekwondo class? Right? Types of things. Because COVID is dormant and, and asymptomatic for two weeks. Everyone who’s living in your house has to basically live like you, the cancer patient. And that has, was really not communicated to me in terms of really specific precautions. I just had to kind of DIY it and I see that as like a really big, big hole in the system for protecting cancer patients.
Jordan Heath-Rawlings: When you say you had to DIY it, how did you, do that?
Ann Borden: Well, I, I had to in some senses, just use my common sense because when I looked online, the information that I got when I looked generally speaking at Canadian sites, Ontario Cancer Care, BC Cancer Care, the information is extremely, extremely vague.
Jordan Heath-Rawlings: Like what?
Ann Borden: Well they might say like, you may have interruptions in your cancer care and don’t let that upset you. That is very vague in general. Right? And the, and then they might like..And also not very encouraging. That’s what we’re hearing from kind of the public health perspective. However, individual hospitals might be saying something different. I was really impressed with, I think it was Humber River Hospital who had a big page who said, hi, cancer people. We’re glad you’re here. We’re going to do everything we can to get you your care as quickly and as safely as we can. That kind of reassurance that is coming from individual hospitals, but it’s not really coming from Canadian health authorities. The other thing that’s really missing is precautions. There aren’t really specific precautions. Mostly they’re generally statements like try to stay home, but I haven’t seen anything in Canadian public health, literature, anywhere online, or even most hospitals that says what family members should be doing, which I think is extremely important. I had to go to the CDC website to find out don’t share bedding with family members, but be careful about this or that with family members. And that was, that took a lot of digging. An average cancer patient would do much better to simply have like a nice booklet or brochure handed to them.
Jordan Heath-Rawlings: Are there places, online or, or otherwise, I guess, although basically everything is online, these days, where that kind of knowledge is being shared? Have you, have you connected with people who are trying to get the same answers?
Ann Borden: I’ve connected with people who are looking for the same answers. I haven’t connected with any sort of authoritative site that is really providing medically sound answers. A lot of it is cancer survivors kind of bouncing things off of each other. Can I take the VIA Rail train to go see my sister in Sudbury? You know? And some people say she can, and some people say she can’t. This is just other people talking about it. It’s not…right? So, yeah, there’s a really, a really big gap there.
Jordan Heath-Rawlings: Have you found any doctor, nurse, healthcare professional in particular, that you have felt comfortable taking those questions to and getting answers?
Ann Borden: You know, what’s interesting is, and I’m not, I’m not knocking on my surgeon or my oncologist or anyone in the cancer team. They’ve been doing great on cancer, but with regards to my entire general health and the decisions that I’m making in my life about my care and about my symptoms and about my…COVID and everything. For those kinds of questions about me, I have to go to my GP. My GP is the one who has time to have a call. And anyone who doesn’t have a GP, I think may be challenged to find a cancer expert who has time for that kind of thing, because our system is, it was already kind of stretched and underfunded to begin with, and this is something extra. But it’s really important extra because it’s life or death. It’s COVID.
Jordan Heath-Rawlings: Have you talked to your GP or, or anybody else in the medical community kind of about the big picture that you’re discussing with me right now? You know, the fact that there doesn’t seem to be any, national or even provincial guidelines or recommendations around this?
Ann Borden: I’ve talked a bit with my GP about it. And I think once I’m through my chemo cycle, maybe I…I have chemo and then I have radiation, so maybe when that’s all done, I’m going to try to write something up, but I think it’s more urgent. I think that we really need a patient advocacy with a lead from some GPs and oncologists to really push for public health, to make the information more available.
Jordan Heath-Rawlings: I mean, cancer is, obviously, a large amount of the urgent care in hospitals, but are there other procedures, illnesses, et cetera that are facing the same problems? Because I imagine, I imagine the risks must be similar for a lot of, you know, surgeries or illnesses.
Ann Borden: There are. And that, that concept of multiple levels of risk is really, really important. Because for example, I’m getting one level of chemotherapy that is, it’s kind of a no brainer. I need to get it. I’m offered a second level after that, which is more what they call “chemo in case”. So for someone, you know, that just in case, maybe we’ll do a little bit more, but let’s say I had diabetes or let’s say I had some other risk factor for COVID. I might want to say no to that second level. Or let’s say I had a, a partner who worked in a really high risk job of bringing home COVID. That might be a point where someone would want to say no to certain things that are kind of optional or experimental. And I don’t think that…I haven’t seen seen, in my experience or in anyone I know, that all of that is kind of laid out in kind of a diagram of risk, that COVID is really being weighed in. We know the risk of distant recurrence and things like that. We know all the cancer risks associated with our care decisions, but are we, are we fairly factoring in the COVID risks as well? I don’t think we are.
Jordan Heath-Rawlings: How have you been getting the kind of support you need to get through this? If you’re forced to, to largely isolate and it sounds like you’re even being a fairly careful with your family as well, you know, that’s tough.
Ann Borden: It’s tough. You kind of have to, you have to push if you have questions about your care. I’m really lucky that I have a good GP who will just call me up at 8:30 at night when she’s done working, or you can also call the on-call nurse after the oncologist nurse, afterwards, and, and talk a little bit about it. But what I’m finding is within the cancer world, they don’t have a script for how to talk about these things. They really don’t have, that I can see, any kind of guidelines for advising people about COVID concerns and COVID prevention. I don’t see it online. I don’t see it on the hospital sites. I don’t see it for patients. And I don’t really know if it’s being talked about in kind of a uniform public health perspective among providers.
Jordan Heath-Rawlings: Which brings me to kind of something else that I wanted to, to speak with you about, because you wrote about this and I found it pretty fascinating. Tell me a little bit about, what happened after your diagnosis and, the immediate solutions, quote unquote, you were offered.
Ann Borden: Right. So I was diagnosed and I immediately went on to use this tool, which is so, can be so wonderful and terrible at the same time. I went onto Facebook. And on Facebook, I found a local support group for breast cancer survivors or for people going through breast cancer. Joined it. And then I realized, I need to tell my friends. So I made a post on my Facebook page saying, Hey everybody, I have cancer. Soand so has a meal train going and et cetera, et cetera. Within 12 hours of joining that group and making my post, I started getting ads in my newsfeed for alternative cancer centers. And it wasn’t merely complimentary to existing therapies, it was people saying, “chemo kills” and really terrible things. And making promises like, you can come down to Mexico and get vitamin C IV therapy, and this saves lives. You don’t have to do chemo. Really terrible messages to hear when you’re about to undertake something that you kind of wish you didn’t have to do. And those kept popping up in my newsfeed over and over again. And it was very hurtful to see them.
Jordan Heath-Rawlings: Did you look into any of them?
Ann Borden: I did. I looked into them and I reported them and they’re, they’re not legit. Most of it. And there’s one I’m still seeing. I reported it, but Facebook robots didn’t take it down. Didn’t see. So I still see it. And it’s medical tourism. It’s going to an unregulated place and getting an unregulated therapy and the office for it is in Toronto, but they send you away for the actual therapy. So it’s really difficult to crack down on these people because they’re doing it off shore.
Jordan Heath-Rawlings: How safe is that?
Ann Borden: It’s extremely unsafe. It’s extremely dangerous. And in fact, I know of a couple of people who have…one person from a group that I’m in, who passed away because she turned down chemo and went and did IV therapy. I know someone else who had a different kind of cancer, who didn’t want to have surgery. It scared her because it’s scary. And so she went for IV therapy and now she has come back and her cancer is too, too big. It’s inoperable and she’s on palliative care. So it’s very dangerous.
Jordan Heath-Rawlings: Aside from medical tourism, what other kinds of stuff shows up?
Ann Borden: A lot of things that are supplemental, supplement kind of products? These also carry risk because supplements, vitamin supplements are not regulated. I was told really clearly by my oncology team, not to use supplements because they could interfere with my treatment. And these kinds of ads are just flying all over on Facebook.
Jordan Heath-Rawlings: Did you see any ads for like real, real treatment? Like, you know, support groups, get help, learn more about chemotherapy? I’m making this up now, but you know what I mean.
Ann Borden: Yeah. It was pretty rare. And I think that’s because the people that are selling the medical tourism model are, are charlatans and they want to put a lot of ads out there. Whereas a cancer centre is, is in the community and they’re not aggressively marketing themselves. So yeah, a thought would be, perhaps, some of the regular cancer centres should be doing more of this. So that there would be a balance if Facebook refuses to address the problem.
Jordan Heath-Rawlings: What is next for you in, I guess in, in your battle with cancer, but also just, you know, once you get past that, to try to address the problems you’ve been seeing?
Ann Borden: You know, what’s interesting is that I I’ve been working for a few years now. I’m the chair of the Campaign Against Phony Autism Cures, which is an organization that tries to crack down on people using social media and also in real life promoting fake autism cures.
Jordan Heath-Rawlings: So you’re very familiar with this junk science.
Ann Borden: Yeah! I’m familiar with it, but I wasn’t really personally familiar until this cancer experience. With really understanding the motivation, why people do turn to alternative health. And so while I spent the first three years of my work as a pseudoscience debunker, I spent most of that time going after people. I, I think what I need to do now is I need to turn to the medical profession and speak to them and let them know how they can improve their practice so that people are less likely to turn to CAM. Yeah, because of my experiences of kind of being rushed through not having real good communication, there are some really simple things that they could do to make people feel more comfortable and welcome and less likely to turn to these alternative providers.
Jordan Heath-Rawlings: Well, Ann, thank you so much for telling us about the holes in the system and of course all the best and be well and stay safe.
Ann Borden: Thanks, you too. Thanks for having me on.
Jordan Heath-Rawlings: Ann Borden. You can find her podcast on any podcast platform you like. That was The Big Story. For more, head to thebigstorypodcast.ca. You can also talk to us on Twitter @thebigstoryFPN. You can email us. The address is firstname.lastname@example.org. Thanks for listening. I’m Jordan Heath-Rawlings. We’ll talk tomorrow.
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