A question for the NSCLC Community

What resources do you wish you had to help manage your or your loved one’s condition, but haven’t been able to find? What would your ideal support resource be, and how would it help?

Answers from the Community

I wish there was way better diagnosis earlier on in the game. For more information to be out there so that people feel comfortable with it and not afraid, denying that it’s a real thing. I wish that we had more information out there and that it was more widely accepted.

Oh, an ideal resource would be a personal care assistant. I qualified for a onetime cleaning of my house through a house cleaning foundation. But if I could get somebody here once every two to four weeks or something, just to do the dusting and the vacuuming, that would be amazing. And to have somebody readily available to just run to the store and get me things, or if I place my grocery order, they could go and pick up the order for me and save me money from having groceries delivered. And if there was a service for disabled people that could have free grocery delivery, that would save me $10 to $15 dollars for every time I need to order groceries because I’m not running out to the store to get things. And one other service that would be very helpful if somebody could help me navigate through insurance bills and getting those bills paid on time. I was so overwhelmed with my diagnosis and my condition and my treatments and working that it was just so overwhelming, the amount of numbers of explanations of benefits that were coming in. And so if there was somebody that could help organize those and get them in an order that you pay your portion on time, that would be totally helpful.

I don’t think any, because I find very helpful, valuable information with different resources from the internet and also from the doctor like I said. I don’t think I’d do anything different in terms of that.

I feel like I’ve had available most resources that I would want. I was planning on going to a support group at my local cancer center just because I thought it would be helpful to talk to other people who have been going through it maybe longer or longer term survivors but with COVID-19 a lot of that has changed and that hasn’t been possible for me. I think that’s about the only thing that I would really like to be able to do that I haven’t felt able to.

One resource that would be convenient would be a round-the-clock call in service that might be able to answer questions. Some of the urgent kinds of issues that come up that need answers, that could be taken care of directly without having to look at a website or at sites available or apps on the phone. We haven’t found anything directly like that. There are other resources that we have looked at, like some of the organizations specifically for cancer that have been helpful, but one of those that would have more immediate response for direct medical information would be most useful.

Very grateful that I have the resources I do through the different lung cancer organizations, like LUNGevity, GO2 Foundation, Lung Cancer Research foundation. I think it would be better if all the doctor’s offices somehow got the information out there about these groups, because not one office I go to has that information. Not many brochures that are around. The doctor’s offices are maybe left by pharmaceutical companies for advertisements, things of the like. They really don’t push the 501(c) organizations that are there to help us. And I wish we would hear more about it from our own doctor’s offices.

Resources would be that, I guess, maybe when I run into dilemmas and issues about the scheduling of appointments or my ability to get to an appointment, if there could be a more sympathetic ear, and if there could be a way to navigate those issues. Again, it sounds like a silly thing, but travel becomes an issue for me because I don’t drive any longer. At least I don’t drive long distances. And so that becomes an issue. And I hate, I absolutely hate, to have to change or adjust appointments because I have no way to get there. That doesn’t seem very fair. I know how busy my doctors are. So I guess my ideal support resource would be an availability of travel, of some kind of travel assistance.

So one thing with the current treatment I’m on, it’s to cause weight gain. Most treatments for cancer cause weight loss. So there’s a lot of diets and tips on how to gain weight when you have cancer, but not very many diets that are cancer friendly. So I would love to see something like that.

I would say my ideal resource has been having a therapist that was familiar with cancer patients. She’s been very helpful in helping me to have a plan and working my plan and not getting bogged down with anxiety.

One of the things that I wish I had access to is someone who can help me just coordinate care with all my different doctors. Sometimes it’s hard for me to decide what things I should have my oncologist address and what things I should have my primary care physician address. That’s not even counting any other doctors like my orthopedic guy or my OB/GYN, or anyone else. Especially when it comes to trying to coordinate medication. I wish there was a good resource for just figuring out what medications I can use with other medications, and even the timing of taking all these medications. My targeted therapy, I have to take twice a day. So I worry that sometimes my other prescriptions might interfere with that, and sometimes the doctors don’t seem to have a good answer for me. So some sort of resource like that. Kind of like a central, check-in person who can figure all those things out with me would be helpful.

The biggest problem I had during chemo was surgery, recuperating from lung surgery. I wasn’t able to find any volunteers that would be willing to come in and help take care of my cats, such as feeding, cleaning the litter box, et cetera. I had to pay someone to come in and do that, and funds were very short. I was out of work. So, that would have been a big help. Also, I did not find volunteers that would come in and help with cleaning, doing laundry, preparing meals, shopping for groceries. I couldn’t find any groups that were willing to do that. I could barely get out of bed to do these things. Family and friends provided some, but not all of the above.

I think the resource I would most like is a Ouija board that worked, that could tell me how long this adventure, if I can call it an adventure, was going to go on. What the next turns and twists would be so I can decide how much to pack in now or do I have a really long time to do it? No one can answer that.

I think early on, it would have been really nice to be able to find a local support group for lung cancer. Where I live, there is no such thing through any of the hospitals or anything that I could find. Everything that I was able to get was online. I just recently did find a support group for cancer in general, not specifically lung cancer. So we do have a commonality there that I can talk with, but it’s still not quite the same.

Sometimes I wish there was a person that I could call, an oncologist, a doctor, or anyone, doesn’t have to be that, but I suppose it would be that I could really ask very, very specific questions, very specific questions that are from my non-small cell lung cancer and immunotherapy and the metastatic to the brain because… I don’t know. When I’m in my appointments, I can barely digest what the doctors are trying to tell me, let alone formulate questions. It’s only when I’m home and I don’t feel comfortable reaching out to them with questions. I guess I wish there was someone that I could just call and speaks my language, easy to understand, and is willing to just be available for all the possible questions that you had. I don’t know. I don’t know. Just want more, maybe I want more reassurance. Maybe it’s just not out there. Like CURE magazine. I wish there was CURE magazine just for non-small cell lung cancer, but I do really like CURE magazine. That’s one of my favorite resources.

It would be nice if the different immunotherapy drug companies had more resources for people that have gotten these treatments. There are so many side effects, long term side effects, radiation fibrosis, hard time breathing, coughing up blood. Even though my cancer is in remission right now, I’m still having all these side effects. Because it’s such a new medication, there are no resources. They don’t have the answer to all the questions. I can’t lift my right arm up above my head because the fibrosis is so bad in my right lung, and they don’t have a solution to it. It would be nice if… I’m glad it saved my life, but it would be nice if there was some answers to some of the problems I’m having now. Those resources are just not available.