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Cancer care- what did YOU need?


KatieB

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Asking you guys to share with me your concerns about services that you needed (and did get or didn't know about until much much later) when you were diagnosed.

This question is for survivors AND caregivers.

I am going to a focus group together with several orgs. and I'd like to discuss and address these issues to try to make care care services better for patients and their families!!

thanks everyone!

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What our foundation is trying to do is provide financial support, a local support group and portable DVD players for the chemo facilities so the patients are entertained while receiving their treatments.

Other support I can think of is social worker/case manager support or services in the beginning. You are just so lost to start with...and have no idea where to go and what to do...and what the options are. You need somebody the patient and family members can rely on to help them get the ball rolling.

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What I needed were people who understood what I was going through. I had a wonderful team of excellent doctors. I had a great group of friends and family who were very supportive to me. They went to the doctor with me, asked questions, took notes, held my hand. Took care of me after surgery. BUT they did not understand the anguish and the confusion and fear and all over overwhelmness that I felt. This website was here for me. No question was too trivial, or too far out. People hear understood my fears and gave me support and answered my questions with the experience that only those of us diagnosed with lung cancer or have been care givers have. This website was there for me no matter what time or day or night and I was here a many wee hour of the morning because I could not help myself. This was the service that I needed with all of the other services that I had and I am very thankful to be able to be here.

Carol

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I needed a ride to doctor's appointments and treatments appointments now and then. It's hard for family members to always take off of work to take us to the countless appointments and treatments. ACS here in Minnesota has a Road to Recovery program, but I didn't know about it until AFTER I completed my treatments. It's all FREE to the cancer patient and someone (a volunteer from ACS) will take you and pick you up from appointments/treatments, from your front door to where you have to go.

Also I asked about a lung cancer support group if there were any. Well, back then there weren't any. I started up the first one here in Minnesota.

But I would have gone to ANY kind of support group had I known of one.

They didn't have lists back then, but now some of them do, AND they should make sure they tell us about Internet lung cancer support groups too.

I also wish they would have had a CAREGIVERS IN PERSON SUPPORT GROUP when I was taking care of my mom and sister. That would have been very nice. I can't believe they STILL don't have very many anywhere!!!!! :shock:

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Thanks guys,

Wish I could say it was fruitful for me, but I was disappointed in the entire focus group. Lovely people- and a great service overall provided to the community- but the focus was primarily on BREAST cancer and womens services....

I did get to speak and interject about the need for lung cancer (and other cancer) specific programs and materials......something non gender specific that WAS specific to other cancers besides breast.

We did discuss how important a patient navagator is- and how reaching out to patients was important because alot of patients won't ask or don't know what to ask for....

I also mentioned this website and how our group supported each other and brought up the idea of buddies or mentoring to help new patients thru the difficult times and I had two breast cancer patients tell me that was a terrible idea because other patients always told them terrible things and made them scared.......

I don't think we do that here do we? I find that our "seasoned" members are gentle and matter-of-fact. I think we inject HOPE while keeping things informative, am I wrong?

I can't imagine being afraid to talk to other survivors.

I think we've just got something really special here...I just wish there was some way to package it and put it into the hospitals and clinics.

xoxo

Thanks everyone.

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We needed information. My Mom's onc, who has been a great dr otherwise, only offered the advice "stay off the internet" as we were leaving his office. I know why he said that as, of course I didn't and scared the you-know-what-out of myself before I found this board and Onc Talk (now Grace). It would have been nice to have been given a list of reputable sites to go to to find more information on lung cancer.

Susan

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No Katie, we DON'T scare people here. But before finding LCSC I did find some that did do just that. That is the reason I had made up my mind to stay away from message boards. But for SOME reason that night (middle of the night) whatever I googled brought up LCSC ~ and I opened it ~ and you know the rest!!!!!!

I was just ready to chime in with my answer to you as I needed some time to get my thoughts together on this subject. Well, I see I am too late for the focus group ~ and just as well, I guess. Sorry to say I'm not really too surprised how that group played out. But thanks to you (llike always) for speaking up for all of us.

Suppose I'll just go off on some tangents now since I've actually started thinking about this and your latest update. Our area has probably one of the largetst outlet shopping areas around (maybe even on the east coast). Drove by over the weekend and their BIG marquis out on the road with blinking lights had a 'PINK' ribbon and all the stores were offering 20% off, I think, with proceeds to breaast cancer :twisted::cry: . Hurray for breast cancer, burt I'm dealing with MY cancer and I want MY 20% off to go to LUNG CANCER.

Why when celebrities have breast cancer it is in bold large print and all rally around? When a celebrity has lung cancer and/or dies from it ~ it USUALLY says they have respiratory problems or died from complications from pneumonia or something like that?

Connie mentioned the Road to Recovery program. We have that here in PA. I believe it is probably everywhere as part of the ACS. Actually Fred was a volunteer driver 4+ years ago. The day I got my dx (Sept. 20) he was actually on a run with a patient. He had to give that up because he then became MY Road to Recovery. I, too, looked for a local lung cancer support group. They have plenty of groups here ~ none for me :? .

I promise this is the end ~ I wanted my doctors (local) to all be on the same page. I got many mixed messages. Not mixed, really ~ totally opposite opinions. Medical doc ~ incurable with no chance of survival and showed me a graph with the dismal chances I had of sirvival. Made me look at it the next time too, to be sure I really got it, I guess. The radiation guy told me he could shrink that tumor right outta my chest. What an arrogant sob ( and I don't mean short of breath either) he was/is.

Sorry all about going off like this. This week has brought to the surface many of the feelings I've either left behind or refuse to acknowledga anymore about these past 4 years. I find it amazing that I can remember EACH horrible thing that happened each day this week 4 years ago, but can't rmember the name of a flower I just planted last spring :? . Cancer really messes with one's mind. Well, I'm off now. I'm sure I can hear a giant SIGH of relief to those of you who actually made it to the end here. Thanks.

Kasey

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Katie... I dont think that this group is a terrible idea, by any streach!!! This is a GREAT site.. I have gotten so much out of this, I can only imagine what those who are actually dealing with the disease get from it.

I agree on the fact about other sites.. I joined a yahoo group for cancer caregivers... Now, thats what I would classify as a TERRIBLE group, at least for me. It was all complaining and this and that.. but never any uplifiting posts. and now, when I have tried for WEEKS to unsubscribe to it.. it wont let me.. my email is bonbarded with stinking emails everyday and I cant seem to get my self off the list! :twisted:

There also, is no group specifically for LC here.. I searched. All I found was ones for BC. surprise surprise.. not that I am knocking that by any means, but Its just frustrating!

I would be more than willing to distribute phamlets or some kind of info about LCSC/Lungevity/Onc Talk to the Cancer Centers in this area. Is there a way to get some? or would I need to make something on my own?

People need to be educated about LC... to many believe its a smokers disease, so hence... they "brought it on themselves" . I admit I was niave to that info before Dad was diagnosed.. minus the absbestos caused LC.

I will try to do my part to educate! I hope that others will too!

Shelli

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"KatieB"]

I think we've just got something really special here...I just wish there was some way to package it and put it into the hospitals and clinics.

quote]

I think maybe there is a way. What if each of us started small and took our oncologists and radiologists and other care providers a list of the patient care/giver needs we have identified as well as a list of trustworthy resources we have found (e.g. LCSC and Grace). We can target November as the month to get this information out since it is LC awareness month. I'll be happy to be the chief compiler and designer of the information pieces. Once we got this into the hands of our providers, maybe we can than start to spread the information.

Susan

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Thanks guys,

we DO do this every November and try to get volunteers to do this all year long- the only problem is that many facilities won't take 'solicited" materials. You would have to have a personal connection (or permission) to distribute the materials or they will simply be refused or go into the trash bin.

If you do have a connection anywhere that you think might benefit from our brochure, e-mail me your address/info and I'll get some brochures sent out to you guys.

katieb@lchelp.org

Shell- I'm pretty sure the WCCC has lung cancer information from the National Lung Cancer Partnership since Dr. Joan Schiller used to work there and she founded the National Lung Cancer Partnership- also, David Grant was a patient there and his group that now sits on the Lung Cancer Alliance survivors message board is probably promoted there- I'm pretty sure they won't want "our" stuff. Its a shame that the different lung cancer groups can't come together to make a greater impact throughout the whole communtiy. But it's always worth a try.

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Here I am, a day late and a dollar short (thanks chronic procrastination!).

Katie - I will confess, I have lurked on the message board for a long time. A really, really long time. For me, it's been THE most important lung cancer resource (cancergrace/onctalk was second). My mom doesn't do message boards, but she does ask me for info. Is there maybe a single sheet flyer that could be hung up on a bulletin board? In the room where mom has chemo, there is a bulletin board by the coffee that seems to be open to anybody (lots of support groups all over town posted, of course none for lung cancer). Not great visability, but better than none.

Also, to rehash things I should have responded to days ago, a patient navagator would be the single most important thing. Prior to my mom's diagnosis, she had never even been hospitalized (aside from child birth). Being stuck with a diagnosis no one expected, having surgery and finding out the cancer was too far gone to remove, and starting radation/chemo all within a week made it really hard to make informed medical decisions. Just now she is starting to make some changes based upon her preferences, and it has been nearly two years.

The buddy/mentor thing is an excellent idea. I understand the challeges in having a support group, where there is a pretty good chance many of the potential partipants may not be around for a long. However, having a buddy who is informed and (more important) in the same boat but medically stable would be a huge boost. Unlike breast cancer, EVERYTHING you here when you are first diagnosed is scarey. Your doctor has probably given you a prognosis, and that usually includes a life expectancy of a year, maybe 18 months tops. You get a "helpful" brochure from the American Cancer Society that gives information on smoking cessation and recovering from surgery. If you can't have surgery (i.e., the majority of lc patients), it gives some helpful hints on what to include in your will, and says that often, pre-planning your funeral can be a great comfort. I'm not sure how a buddy would be more scarey than that.

Kasey - Isn't that always the case? I took my mom to book group on Saturday. There is a lady there who was diagnosed with breast cancer about at the same time mom was diagnosed with lung cancer. Of course, because of screening, her cancer was much less advanced. She had surgery and is doing great (probably better than pre-surgery, as she is exercising and eating more healthfully than before). My mom was relating how she has progressed on Tarceva, and would like to be on another targeted therapy, but even the research coordinator at the med center said (in a very, very nice way) that that was probably not possible, because there just isn't that much lung cancer research going on, especially third-line. The breast cancer survivor told about all the new and better drugs out SINCE SHE HAD TREATMANT 1.5 YEARS AGO. Then we went across the street to the wig shop, so my mom could get her "hair done." The wig shop really caters to cancer patients, so this month there was pink ribbons all over, and a sign that said a portion of profits would go to breast cancer research. Not that that isn't important, but it was really unpleasant to be in our situation and confronted with that, on that day.

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On TV today they were talking about the great benefits of Acupuncture to patients being treated for breast cancer ( don't they get lots of studies and research) . They said they had less pain and had less problems with nausea during chemo, were more relaxed, less depressed etc etc. Would acupunture have the same benefit for lung cancer patients taking radiation and chemo , under stess and in pain?

Donna G

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