A question for the NSCLC Community

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?

Answers from the Community

All the support that I’ve been receiving is from my parents financially and physically because they put a roof over my head, and they have taken care of house bills, taken over my phone bill. I am missing out on the family and friends part though, as far as having those relationships with those family members. That has not been happening and it’s unfortunately a part of why things haven’t been going forward for me.

My biggest supporters I would think are fellow survivors and patients. I’ve been on online support groups and just yesterday I was dealing with side effects of a steroid that I have to take through my IV chemotherapy that has affected my sleep so much that I just feel like I’m going crazy. And so I had asked my fellow survivors, “Have you been on this drug and what did you do?” And I got so many responses and so many that were very similar that I asked my doctor, “Hey, you know, what about this? Because I need some sleep.” And so we were able to adjust my steroid schedule of doses to help me get some sleep. Next to that is my family and extended family. I live out of state away from most of my family so I share my stories with blogs. They read my blog and I post on social media and they follow me and so I get so much support. This week when I went to chemo, I posted two posts about my chemo treatment on Wednesday and I think just within hours I had hundreds and hundreds of comments and likes and hugs. It’s just been so helpful to have that support even though we’re not in person, but to know that they’re there is just amazing. I can’t even imagine what any cancer diagnosis let alone a terminal cancer diagnosis, be like before the internet. I would have been a very, very scared, uneducated, lonely person.

Well, my biggest supporter has been my son, who has been there every step of the way. And also my mother, who passed away actually two years ago, at 99 years old with nothing wrong with her. My mother at the time was very, very supportive. And my son and my friend [PII redacted] who encourages me and my friend [PII redacted] who tries to give me positive affirmation all the time and tries to make me laugh all the time. My doctor too, she tells it like it is, but she always gives you hope. And I would say by far, my son. He just has been the greatest blessing in my life.

My husband, my children and my two sisters, they were with me in the hospital when I had the surgery and after surgery. When I came home afterwards, they kept me company, helped me shower, fix meals for me and clean the house. They kept me company during treatments. They gave me rides to all of my appointments, which were two hours each way, and they still cheer me on when scans are scheduled and I’m waiting for the results and when I have appointments. But pretty much our life was able to get back to normal now. So I’m so glad of that.

Biggest supporters have been friends and family, even though during this time of COVID, we haven’t been able to be close to anyone, which is very frustrating. The medical’s team has been supportive. However, we have been somewhat disappointed at times that personal research of following alternative or additional therapies that weren’t suggested by the team and we had to make suggestions to have them, have those additional therapies implemented. In general, the medical team has been supportive and helpful along with friends and family.

I would say my family specifically, my sons, are my biggest supporters just by caring about me; not necessarily by doing anything, although they do help if I need something. My doctors were a big support, because they did amazing surgery, and I appreciate that, and I love my medical care team. But I would say my biggest support system comes my friends who I now call family, from my lung cancer community. We meet each other at summits, we come from all over the United States, and some even from out of the country, and before COVID, we would get together every couple of months. Wherever there was a lung cancer summit around the U.S., we would try to meet up, and they’ve become my biggest supporters, and I go to them and we understand each other totally.

My biggest supporters are my two children and my doctor. My two children because they are with me every step in the way. They come with me to all my doctor’s visits, they drive me back and forth to wherever I need to go, and they are there for me at all… They bring me down if I start to get anxious about stuff. And my doctor because no matter what issue I call him with, he or a member of his staff are very quick to get back to me and to react to whatever my concerns are.

My doctor has been amazing and listens to all my concerns and treatment options. My biggest supporters would be my husband and my three kids. They’re always there to listen when I need to vent or help me enjoy life.

I would say my support system, of course, my family. But more importantly, I have very strong girlfriends that support me and will monitor activities so that I can participate. Currently, I would say with COVID, they’re very cautious and make sure to wear masks around me. I had a wonderful therapist that I went to for a couple years that really, really helped me overcome the fear and anxiety of living with cancer.

I would say that of course my husband has been my greatest supporter. He’s really been helping me all throughout. Even now, just taking a lot of duties that I have day-to-day off of my shoulders has been a big help. And just being that emotional support, especially during anxious times, like around scan time, and just always with me at my appointments. Other family members, my parents have always been there. They go to every appointment with me so that we all are on the same page and everyone is up to speed on what’s going on with me. I also have a few friends who occasionally check in and ask how I’m doing. And my condition is quite rare, so I have sought out other people in online communities who have the same condition, and we support each other. Even if a lot of us have never met in person, we all kind of share the same journey and we support each other that way.

By far, my biggest supporter is my oncologist. I have a very close relationship with my oncologist, and I find his support so important. Next, would be my grandson, friends, and fellow cancer survivors at the American Cancer Society Hope Club. How they have helped me is emotional support, helping me get to appointments, coming in and bringing me meals when I had chemo, just being a general support, a phone system for support through the American Cancer Society Hope Club which was really invaluable.

My husband is my biggest supporter. He really is. He’s always there. He’s supremely confident that these things will work out. He is the best. A support group I belong to, which has disbanded with COVID, has been very helpful over the years. And I’ve made some friendships in there. One person in particular, who passed away last week of stage four ovarian cancer. She was really the one person I could share anything with. And I don’t where I’m going to go from this point on. I look fine. I have kind of kinky hair, but most people figure I’d beat the lung cancer. It’s not worth explaining to them I am taking a pill, TKI, every other day. And I’ve got all of these goofy skin conditions and GI tract issues. I just know that people think what they’d think. Again, I’m into major denial.

My biggest supporters are certainly family, my daughter especially. My daughter is a physical therapist. She knows a little bit medically, so I talk with her a lot. She always has good questions for me to respond to or questions for the doctors for me to ask. She goes with me to a lot of appointments or she did until she started having all kinds of babies. Now she doesn’t so much. Friends are supportive, but friends are only supportive when I ask them to be. I have to let them know I need them. My husband died a year ago. For the first three years, he was my biggest supporter. He was always there for me. It’s been very, very hard, very hard this last year to move through the treatment and the concerns and the worries without him. However, I have had an incredible, incredible amount of support from the two oncology social workers at the clinic that I go to. They’re so phenomenal. I just can’t say enough about them. They have been there for me, no matter what. They’re the best.

My husband is my biggest supporter. He was the one who took me for my biopsy. He’s the one who’s been there for every doctor appointment up until COVID. He’s been there the whole way. He’s a shoulder to cry on when I need it. That’s probably the top one. I have also have a couple of friends that I did make on a support group through longevity that I could lean on to for some more advice, if I need it.

My two biggest supporters are definitely my husband and my father. They’re like two mother hens. My dad calls every day to see how I’m doing. My husband probably calls 20 times a day or sends me a text message 20 times a day. My husband has definitely helped. He didn’t do any kind of housework before, nothing, not even a load of laundry, and now he helps me with all of that. He does everything outside and does a lot inside. He does the vacuuming because he knows that’s hard for me. My dad offers to do grocery shopping and stuff when I don’t feel well. The two of them have been really, really helpful.