Your input would be appreciated.

[teresag]

Hello - Some of you may recall that I am researching sources of distress in lung cancer. I'd like to ask for your impressions. Below are some sample quotes from interviews of people with NSCLC. I would like to know if the categories make sense to you in the context of your own lung cancer experience. Is there anything missing that causes distress for you?

I will warn you that some of the quotes are emotionally powerful. Any comments at all would be appreciated. Thank you.

Symptom distress (how symptoms cause distress)

1. Impact on usual activity - decreased productivity is distressing.

“Well, distress is what I’m able to do or not do. I get distressful because I can’t do what I used to be able to do several months ago."

2. The unexpected - especially in relation to the initial diagnosis.

"I had blood in my urine, my skin turned yellow, and shortness of breath, then I went to the hospital and they did a bunch of tests and they had to put a stent in my left main artery. That’s when they also discovered the lung cancer. So it was discovered by accident."

3. Emotions - fear, worry, & depression are distressing.

"The shortness of breath? It’s very frightening. VERY frightening. You feel like or at least I felt like – uh – this must be how it is if someone was going to put a pillow over your face and kill you."

Cancer Distress (distress not directly related to symptoms)

1. Concern for others causes distress.

"watching my caregivers stress themselves out for me and they've got to take care of themselves because they’re overworked - you’re worried about everything that you can’t do for your family.”

2. Waiting & wondering - esp. in relation to scans, is distressing.

"Waiting from scan to scan gets you so upset...You wonder: Is this it? Is this the day they’re going to tell me, it’s all over but the shouting?"

3. Stigma - its effects on how people are treated, research funding, etc. can cause distress.

"People who smoke are often blamed for it and they should not be.“

4. Forging ahead - staying positive for self & others to prevent or ease distress.

"Focus on living, not dying. Look at it as part of everyday life. Adjust as I go along."

Health care system distress (interactions with the health care system can cause or ease distress.)

"I’ve been very confident in the care and treatment I’ve been receiving here is about as good as I’m going to get. I know I couldn’t get this kind of care in [another hospital]."

Thank you in advance for your input - it is very valuable. Best wishes, Teresa

[kimblanchard]

I would add one more - financial stress. And paperwork. In the beginning, on top of intense business, we were also deluged in paper necessary to establish what was happening and to get some financial aid coming in.

Otherwise, I think the hardest for us was the uncertainty, the not knowing, the hypersensitivity to every twitch and tickle, wondering, is this something new?

I admire your work. Margaret

[Elaine]

I guess depending on stage and to a certain degree all stages I think there is spritual distress. Even people who I have talked to who are deeply religious are afraid of the unknown--as in what will it be like after death.

Also the thought of dying itself causes distress, more so than being dead, I think-and on many levels, personal and its effect on family and loved ones--the dying process, I mean.

Maybe these are covered in your categories, I just couldnt tell.

Thank you for the important work you are doing.

elaine

[luvmydog2]

All of the points are good ones and effected me in to some degree. Before I was dx, I went to the doctor because a co-worker stayed on me. My wife and family could not get me to go. My wife had the flu and I got her an appointment. Having been an employee at the same place, my co-workers want to know how she was. I told them that she had a doctors appt and they ask, "and when is yours?" Well I managed to see the doctor also...... and now you know the rest of the story.

I echo what Margaret said. The hardest part for me was making a transition from a decent paying job to short term disability and then SSDI. Fear of the UNKNOWN. Paperwork. Yes there were and still is lots of that. Had insurance on a credit card but come to find out (even with permant disability) they still make the min month payment on the acct. Well now when you add the interest and then pay the minimum payment go figure. Also there obligation stops when the orig balance is paid. An example of this is say they pay 25.00 and finance charg is 18.00. Well 7.00 off the bill so when their part is paid guess what....you still owe the bill. If this is not enough hassell, the doctor must fill out a new paper every month for me (another 10.00) but I did manage to get that changed to 6 months.

Now back to the subject. I decided long, long ago that I was going to get what I need to fight and worry about the bills later. If I was forced into bankrupcy then so be it.

Financial worry was my biggest concern. Sorry I strayed off the topic but hoped this helps someone else.

[teresag]

Thank you so much, everyone. Your insight makes this kind of research happen. I can never thank you enough for sharing your personal experiences to help health care providers understand the experience of having lung cancer. I am sure your contributions will make a difference.