Who are your biggest supporters specifically when it comes to your or your loved one’s condition? For example, your doctor, friends, family, or someone else? And what are some examples of how they have supported you through this journey?
My husband had dementia when I was diagnosed. He wasn’t really able to do more than just hold me and dry my tears. My sisters and daughter were the biggest helps. One sister had already had breast cancer and was able to give me good tips, and they all gave me good moral support. Sadly, my husband passed away not long after. But I really don’t need any support now because I am that strong person.
My parents were definitely probably the biggest support to me. I didn’t live with them at the time of treatment but I lived really close to them, so they would come over every day, pretty much during chemo at 18 weeks of chemo. They financially supported me when I ran out of PTO from work. They would give me money in order to basically supplement what I had been making at the time. So, I mean, just to give specifics, I think they probably gave me like, I don’t know, 10 or $15,000 over the course of treatment. I also had to go to Chicago for radiation. I had to live there for six weeks, so they gave me money in order to do that and then I also lived with a family while I was there, so that family was a huge support to me. I also belong to healthcare sharing instead of insurance, so other people across the country send me money to pay my medical bills and they’ve sent me over $200,000 so far, in order to pay my medical bills. So obviously without those people, I wouldn’t have been able to get the treatment that I got. They were a huge support and that was 330 different families. So I can’t name them all individually but they were a huge help. Then of course friends. I would say my friends were actually the ones that asked me how I was doing the most. Maybe it’s a generational thing and millennials love to talk about their emotions but I feel like my friends were probably the biggest emotional support. Then of course, my church was a huge support to me in terms of always praying for me and I think that definitely made my side effects better than they could have been or would have been otherwise. So many, many facets of support. I’m super thankful. Oh! Then somebody from work like gave me 70 hours of PTO, so there were very specific gifts and forms of support as well.
My biggest supporter, I guess my dad. My mom died of the same cancer due to hereditary. She died two years ago and my dad, he doesn’t know how to support me, but I know he’s my biggest. My husband, he does support me, but it’s hard on him. He feels like no one understands what he’s going through and nobody does, just like no one understands what I’m going through. My doctor, oncologist is the one I see the most. He is spectacular. If it wasn’t for him, I would probably not be speaking at this moment. My two sons, yeah, they … I don’t know. They can be. However, they have their own lives. They have children. I don’t want to bother them with my problems even though I so desperately need them in my life. And with this COVID-19 stuff, not being able to really see them, it’s really hard on that. The example of [PII redacted] helping me, my husband, he does help me with the physical stuff. It’s hard. It’s truly hard. My doctor will put me in play sometimes and the pastor that I see, she said one thing to me that I remember her saying. “You are staring death in the face. What you need to do is put that death face to the side and not stare at it all the time. Put it aside. It’s there, it’s on your shoulder, but you’re not staring at it.” That was the best thing that I have been told for four years and 10 months of this, and people call it a journey. No, it’s not a journey. It’s different. It’s not fun.
Well, as far as supporters are concerned, I would have to say it would be the healthcare workers that I met along the way, and still meeting new ones. They were incredibly smart and caring, and had kept good records. They had a portal I could look up if they gave me information, if I wanted more information. The hospitals that I went to all had supportive things that you could go to, yoga, whatever. They had organizations to take care of … They still send the emails about that. I just don’t think I need that sort of thing. I continue to be treated by these same people, and that’s really all I need, I think.
My biggest supporter, I have to say my mother is my biggest supporter. I live in a triple-decker. I’m on the first floor. She’s on the third floor. She comes down. She makes sure that I have eaten that day because frequently I lose my appetite. She will pick up around the house for me when she knows that the bone pain is really bad. She is very supportive if I need her to come with me to many hospital visits. I also have a number of friends who check up on me and make sure that things are going well and will help me out if I need anything. I have to say I have the greatest providers. My oncologist is excellent, and we get along so well. My PCP and my psychiatrist, because I suffer with depression, I’ve been seeing both of them for over 15 years, and they know me so well, and it’s just been so good to have them there. I also see a therapist. I see a social worker at the hospital and palliative care. It’s unbelievable how those people really are the ones who are able to get through to me and to just keep me calm and to help me with financial needs and to help me with medication, finances, and to really look at all the different options that were available for me. I go to a support group. I do online support groups. They have helped me tremendously. So I have a really good support system.
My oldest son has been my biggest support. He lives about a half hour away from me. He has always been available when I call him for even the littlest things. He’s made me meals, he’s done shopping for me, he’s done yard work things around the house, gone to every single appointment I’ve had, he has gone with me and been there beside me, and he listens, he tells me what I don’t remember, he takes notes for me when I go to the doctors and he’s just been great. Several friends, they’re good at calling and some of my relatives, they all live out of state, but they do call and check in whenever they can.
Well, my best source of support has been my husband. He tries to keep my spirits up. He takes me to every doctor’s appointment. He keeps track of all the insurance things for me, so, and all of the money situation in our family, so that I don’t have to deal with any of that. Also, I mean, friends have been very kind, and keeping in touch with me, and checking in on how I’ve been doing.
Definitely my family, my husband, my mom, my son, and they’re just always there for me and my husband is always pushing me to be the best I can every day and not live as a person who has this disease, but just to live as the person that I am. And they just love me through everything and support me and we talk very openly about it and I’m just very thankful and grateful for that. And they just treat me like every day is a normal day and if it’s not, then that’s okay too and we just kind of go with it.
Well, my partner has been amazing, and by my step, every step of the way. In Boston, are the premier authorities on triple negative breast cancer. And I think having authoritative voices in the room is very important. How they’ve helped me, been with me personally, every step of the way, and how a great medical team has helped, has been to support each decision and each incremental thing that’s happened along the way, which I think is incredibly important. I think having a team around you for metastatic is critical. I also have a wonderful support crew and they have provided me cheer and support in numerous different ways. I’m very lucky that finances and money don’t have to be part of the equation of cancer as it does for many cancer fighters, but I feel very supported and I think that’s an important part of the process, especially for long term.
Well, my biggest supporters are my family for the most part, meaning my immediate family, my mom and dad, my husband and my kids. My kids are actually so supportive at this moment. They don’t speak much about their feelings towards my illness, but my son in particular, he’s 11 and he wants to take care of me. And that’s the best feeling in the world is knowing that he wants to make sure I take my medication. He wants to see me do better. He’s concerned when I’m not feeling well. He wants to take care of me and it’s really great. I also have a good support system in my friends. I have a lot of friends that will text me and ask me if there’s anything that I need and they will drive out to me and deliver it or just come see me, spend the weekend, get me out of whatever low that I’m having. And there’s times where I’ve wanted to cancel plans just to be lazy and sleep and feel bad about myself. And I don’t cancel and I’m really happy when I don’t at the end because they make me happy. My friends and my family allow me to be myself and not think every day that it’s going to be a bad day.
My biggest supporters are my husband and my cousin, most certainly my husband. He takes me to appointments. I tell him he doesn’t have to sometimes but he always does, and I’ve been so glad he’s there. Sometimes I need someone to physically lean on when I can barely walk. And my cousin has cancer and has been on chemo about the same length of time, but for lung cancer. We email one another and share our ups and downs. It helps to know someone who really understands the symptoms and the side effects, and we discuss our doctors and how sometimes they just don’t seem to really think of us as people.
My kids, my best friend, all my coworkers, my entire family, they’ve all helped. They check in. My best friend is my biggest supporter, she goes to every doctor’s appointment with me. And now it’s conference calls, so I’m there and she’s on the phone. Yeah, I have very strong support system. They all try to help. Whatever they’re happy doing, I’m happy with whatever they do. I don’t ask, I just allow them to do what they think would help me out. So, I just say thank you. And then I’ve learned to relax and just let things happen.
My biggest supporters were my life partner and my parents. My partner and my parents all came to all of my appointments, they were wonderful. My partner was my biggest, biggest supporter because she was literally on the front lines with me every single day, on the days that I felt horrible and days that I felt okay to do something, on the days that I wanted ice cream, or the days that I couldn’t really eat much of anything. Absolutely. On days that I was so sad that I couldn’t move or thinking that I couldn’t do one more round of chemo, my partner would sometimes literally lift me off the bathroom floor, or other times trying to distract me. I didn’t realize I was going to get so emotional talking about it. Or trying to distract me with a fun game that I did most certainly did not want to play, just so I could make it through another day. My parents were wonderful, my dad did all the driving to and from chemo appointments and other appointments, and my mom was with us also and they’ve been wonderful, wonderful supporters. I feel I was also supported by my doctor, and friends, my brothers and other family members would send me quick text messages to let me know that they were thinking of me. My youngest brother would send me little gifts from him and his now wife and just little pick me ups. My aunt used to text me all the time thinking of me and that she loved me and those little messages, and sometimes I just couldn’t reply to people because I just couldn’t. But all the little messages on Facebook, by texts, those all were really helpful to me, so those are some examples. Also, somebody he said, lots of times when people get sick they say… Other people will tell you, “Oh, let me know if I can help.” But they have two jobs, a husband, and five kids and you know there’s no way that they can help you. So one of my friends offered, she’s like, “Look, I’ll bring you food, just text me the word casserole, you don’t need to explain it to me, you don’t need to talk to me, you can just text the word casserole, and I will bring you one.” And I feel that was the most helpful thing for people to offer very specific things, like I can drive you here, or I can take you there, or I can bring over a casserole, or I can mow your lawn, which was my neighbor said, “While I’m mowing my lawn, I will mow your lawn too.” Those are the types of things that were super, super helpful and where I felt the most supported. A couple of my friends came over and cleaned my house. And it felt awful for me because it’s normally something that I can do for myself, but I feel so grateful that they did come over and clean my house. It felt awful watching somebody else do something that I can normally do for myself, but I also felt super duper supported and loved through that, which is not usually my love language, acts of service. But many different people showed up for me in different ways and I did feel very supported.
My biggest supporter is my husband, but I also have my dad and my daughter who are great supporters. For medical support I have a nurse case manager who helps me tremendously, with just navigating this whole cancer journey. I also have two nurse practitioners and of course my oncologist. My husband provides help with my daily activities, such as cooking, house maintenance, and he takes me to all my appointments. He’s also a constant source of support mentally that is much needed dealing with a terminal diagnosis.
I have a family member and a friend in a support group. My friend was always there with me at chemo, and she would come over and bring food to me. And even people at work always asked if I needed something. But usually my friend and my mom, they would just cook for me and drive me places and keep me company at the doctor.
For me, I found the word cancer was not a good word with the majority of my family. When I was waiting for the results of my biopsy, everybody in my family was just caring and, “Oh, I’ll be there for you, and let me know what happens.” And then if I didn’t let them know fast enough, then they were contacting me. My mother was probably my biggest supporter, and my sister was… Talked the talk, but didn’t want to walk the walk. I’d say my primary doctor was a great support factor for me. She would call me just to see how things were going, even though she wasn’t providing my oncology treatment. When the surgery came, I was uncomfortable changing my bandages from my mastectomy. She told me to come on in, she would take care of it. She made sure that I was getting home care because I was dehydrated, called in orders for home infusion. Oncology totally missed it, surgeon totally missed it. Got me all kinds of additional care that I needed because I was falling through the cracks. And some examples of how some people supported me. My friends, closest friends were my best supporters. They would stop by and see me, they would call after a few days after my chemo infusion, “How are you feeling? Do you need anything? Can I stop by and see you?” Et cetera, et cetera. So, my biggest supporters were my closest friends and my mom. And then family members, any other remaining family members were just out of the picture because cancer scared them, they didn’t want to know what was going on.