What tools or resources have you found most useful regarding your or your loved one’s condition? This could be a website, a specific organization, or an app for your smartphone. What makes this resource (or resources) useful to you?
I was already using a website for caregivers, caregivers of people with dementia. These folks were so kind. We shared our stories and became friends online. When I was diagnosed, they rallied around me with so much love. Caring.com was the site. One of the ladies asked me what my favorite colors were and braided a rug and mailed it to me. It still hangs on my office wall. I will never forget their kindness.
Probably the three biggest forms of support for me, the first has been Instagram, which I’m 28, so are you surprised? But what I love about it is that with the hashtag feature, I could put something like HER2-positive cancer or breast cancer and find people who have my exact diagnosis, or young adult cancer and find people who are in my age group. Because at my cancer center, it’s all old people. So I didn’t ever really feel like I was getting a whole lot of support there in terms of people understanding how my experience was different than theirs at a different age. So anyways, Instagram has been huge. Met a lot of really cool people through that, and then have gotten to actually visit one of them in person, and that was just amazing. My city also has a young adult … Well, no, it’s not even for young people. It’s just a breast cancer Facebook group, basically. Central Illinois breast cancer survivors, I don’t know what it’s called. That’s been really helpful as far as questions and answers. So people will post on there. I posted when I was trying to decide whether or not to have reconstruction. And so then to have people answer, not only to know, “Okay, now they’re actually thinking of me and supporting me,” I mean, that’s super personal, but also just to gauge information and personal experiences. I find that way more helpful than just reading about somebody having reconstruction, to actually hear personally how it went for somebody. The last thing that has probably been the most help is my city, the major hospital system also has this nurse job called a nurse navigator. They literally schedule all of your appointments, across all different providers. So the day I was diagnosed, I was assigned to this lady as my nurse navigator … Sorry, if this was getting long … And she then scheduled all of my first appointments with my plastic surgeon, with my regular surgeon, with my cancer center, with my genome testing, dietician. She does all of it. Then periodically, she would check in with me and ask, “Do you need anything? Do you need any services or whatever?” And then she would get those scheduled. Plus, she was just an open book as far as information. Whenever you have someone that’s that highly specialized, I feel like it’s super helpful because then you can bounce ideas off of them. Like, “Oh, I’m having this issue with my shoulder after radiation. Is that normal?” And then she’d be like, “Yeah, here’s what I would refer you to.” She is a nurse, so she can have some level of referring power, which is also really nice to have a single contact. I’ve spoken with people who didn’t have someone like that, and it was extremely stressful for them to feel like they didn’t have someone overseeing all of their treatment. Things get missed and dropped and you don’t get consistent information. That was like a huge source of information and support for me. But I honestly, I was a lot more informed by actual people than I was websites or books or anything like that.
The report I’ve been given is My Chart through the hospital I get my treatments at. Wonderful, wonderful website. You can see pretty much everything. I go on there and look at appointments and messages to my doctor, do the teleconference or telehealth, the … where we’re on video chat. Another one is Ciitizen, with two Is, Ciitizen, and they have a wonderful concept where you put all your medical records in that one website you can view your x-rays, your MRIs, your CT scans. Anything that’s a record that you have that’s a hospital. And even though I only have one that I need to go through is My Chart through my hospital, I still like to use Ciitizen and because they do have a wonderful concept. So that’s it.
Well, let’s see. A support resource. Surely in the beginning, it’s very confusing. You don’t know where to go. And I got a lot of sales talk from doctors on why I should use them in particular. So it was an incredibly confusing time and you feel that time is of the essence and you do want to move on very quickly. At any rate time did march on and I would say that actual resources, once things started happening to me, I read an interesting book called the Emperor of All Diseases, I think it was called, and it’s about cancer, how cancer started and all of the experiences that these doctors had. That was actually a pretty scary book because we haven’t actually found a cure. But in the end, I would say I also went to a Facebook website, a group that actually that I couldn’t go there. I looked at it right in the beginning and it was very scary. These women were really, really sick and I wasn’t that sick, I thought. So I didn’t continue with that until much, much later. And then I started going back and looking at pretty much lurking rather than adding anything. At, you know, people were going through, it kind of made me feel better. And I did learn some things, but basically in the end, I found that I kind of knew more than them. So some of them were just very confused. But those are some of the resources that I used and the doctors and the healthcare workers that I currently use are a great resource. I don’t usually call them up or email them or anything. I wait till a visit, which seems to be all the time. I mean, I see one doctor or another every two months, so I’m never too far away. And they’re never too far away from me.
There are a number of tools and resources that I found. There are a number of cancer advocate websites. Particularly, I like SHARE, FORCE, Sharsheret, Support Connection. They all have 24-hour helplines that you can call in. They all have websites where you can sign up and join on online support boards, where people are always on talking, at any time. There are apps that keep track of your appointments, your treatments, your medications, and you put in how you’re feeling each day and it actually will graph it out for you. So you can kind of see past month, maybe your mood has increased or decreased, your pain has increased or decreased. They really show you great things like that. Also on Facebook, there are several metastatic breast cancer support groups. And I find that even though we don’t see each other in person, we are definitely able to connect because we’ve all been through the same kinds of experiences. And we you’ll always find someone who has, if you were starting a new treatment, someone in there has already taken it. So they’re able to help you to get through it. You can talk to them about side effects. The web is definitely a great resource.
I try to read a lot. I’ve read books on people that have had breast cancer. The American Cancer Society has been very helpful. There’s been a magazine called Cure that I like. There are several websites that I like to go to that help. Also, where I get my chemo treatments, there was a support group meeting once a month. Unfortunately, because of the coronavirus, that’s been canceled. But it was good to have that support group to talk to people that are going through it and also have already gone through it.
Well, I’ve found that most of the things on the internet haven’t been that helpful for me. I did find a website called Health Unlocked that is just for women with metastatic breast cancer and I usually check on that every day or couple of days and look what’s going on. It’s very useful to me because people talk about their medications, about information that they get that they want to let everyone else know. And I think people that understand what you’re going through can be a little more balanced about how they talk about it.
I think one of the best resources that I found was METAvivor, because it really focuses on research for metastatic breast cancer. They really just have a lot of information and support, and they’re actually talking about your disease. Most of the breast cancer sites do not always talk about that. The other one would be Facebook groups. Support groups are really great, as you get to talk with people who have an experience that you are going through. So those two resources are really the best.
I would say the number one online resources I’ve used is clinicaltrials.gov. And, I combed through that website and read in detail so many of those trials. And, I found that very useful to me. I know that clinicaltrials.gov has received grief from cancer patients about not being friendly, but I think it’s terrific. So, I use clinicaltrials.gov. I also have used Google Scholar to affirm that Eric Weiner and his team at Dana Farber are the world’s leading experts in triple negative breast cancer. Specifically metastatic triple negative breast cancer, which that was reassuring. I’ve read a lot of books and I go to the American Cancer website. I’ve gone to Komen website, but I think the number one go to place for me is clinicaltrials.gov. And, then I read and decide which top clinical trials may work for me and then run those by, for her opinion, to decide where we go next.
Not long after being diagnosed, I went onto Facebook to search for groups that were dealing with the same issues that I was dealing with. And I came across a metastatic breast cancer support group on Facebook and joined that group. And it’s been wonderful. I’ve come to meet people that have the same diagnosis and the same treatment options and the same side effects and getting to know that I’m not alone. And the things that I’m dealing with are not me just complaining or thinking I feel this or feel that, because they feel the same thing. And it’s refreshing to know that I can ask them questions and they can answer it because there’s people on there that have dealt with this for many, many years. Which is promising and helps me look forward to the next day and the next day and the possibility of living years and years, hopefully. So I can see my children grow up.
The tool I found most useful is the internet in general. So, I can look up medicines to learn about side effects and then look to others reviews on those medicines so I know what to expect. My oncologist seems to think chemo is a piece of cake. All he says is that all medicines have side effects. He isn’t forthcoming about what one might expect, and if I tell him I have something other going on while I’m on a chemo treatment, he usually says it’s nothing. In other words, he thinks it’s not really being caused by the chemo, but I know different. So, I rely on the internet to tell me these things rather than my doctor.
That’s a My Chart application that you can put on your phone, and you can see your test results, and your next appointment, and when your medications are due. That helps a lot. And just being able to get in contact with my doctors whenever.
The most useful tools for me have been people who I’ve gone through or are going through what I’m going through. So support groups, specifically it’s hope connections, I think it’s hopeconnectionsforcancer.org. It’s free programming located out of Bethesda, Maryland that offers all different types of support groups and other programming for cancer patients, as well as their caregivers or family. It’s all free. They rely on donations only. That has been immensely helpful. The young adult support group was extremely helpful to me. It was a game-changer for me because, and I had originally gone to the breast cancer support group, but I found that I didn’t have anything in common with those women because they were talking about retirement and I am not of the retirement age. So I found that the young adult group was much better suited for me. So I liked that a lot more. Both Hope Connections and the support group were by far the most important thing, as well as connecting, which all goes to the connecting with other people who are going through it, because I do feel like cancer is not something anyone understands unless they’ve been through it. Period. People can try to understand, but they won’t, unless they’ve been through it.
When I’m given a new medication by my oncologist, I always visit a website called Chemocare.com. And I gather all sorts of information about the specific medication, what’s it intended for, the side effects and so forth. And I also go to the particular drug manufacturer’s website and look up that particular medication. It also offers a great deal of useful information on the particular drug. I also find online support groups of other individuals living with the exact same disease that I am living with, very beneficial and it provides a great deal of support knowing that you’re not in this alone.
The resource was a book that I got with all kinds of resources. So it was a book that I looked up on the website that helps people with cancer and what very organizations were crucial for me, like getting support and finding friends with SailingHeals. So you can take a caregiver out with you on a day on a yacht with lunch. And I became really good friends with them and even spoke at one of their fundraisers. So SailingHeals [inaudible 00:00:33] and then [inaudible 00:00:35] . I found them also in the book and it’s a three day fly fishing for women. It was fantastic. And it was just bonding with all these women and made friends. And then, there’s them. Oh yeah. See More Pink, which is a local foundation which gives financial support. So they were all in this book of resources and seemed pretty much by word of mouth.
For me, I haven’t found a lot of resources that work for me. There’s plenty of them out there, and I see them, and I look at them and evaluate them, but I just don’t find they work for me. I’m not sure if it’s just they don’t appeal or what, but it’s just something that doesn’t drive me to want to participate. One of the things I found is just answering some basic questions. Sometimes I know there’s some variation to those answers, and I take that into account, but American Cancer Society website seems to be the one that’s the most factual without getting into too many details or too in depth with their answers. Again, my oncologist is too basic, throws out some statistics, and they have generic things, “Oh, you’ve been through hell and back.” Then they move on to something you don’t want to hear, they don’t care if they discuss with you or not, but American Cancer Society website, I found to be a nice resource for me. If you have to call, there’s always someone there to answer. They’re always very compassionate. If they don’t know the answer, they find out the answer. I even had a friend of mine diagnosed with the same cancer as me and she called the American Cancer Society with a question that was bothering her quite badly one evening, and they found a doctor that was able to take her call. I find that extremely valuable.