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For the caregivers...a question...


SBeth

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In the 5 months since my husband was diagnosed with Lung Cancer, he has never once surfed the internet or accessed a web site to seek information or support. I, on the other hand, search endlessly for any crumb of information, support or hope. Are there many other caregivers out there that find the person they are caring for seems to be afraid or non-interested in learning? Also....those that have cancer...did it take some time before you were able to bring yourself to the keyboard and the "information-highway"?

Beth

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I think each person deals with stress, crisis, bad news, etc. differently. The first thing I did was to search the internet for information about lung cancer, treatments, etc. When my husband has had health problems, he has left "information gathering" to me and seems to want to know only the essentials. Everybody is different.

Muriel K

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Hi there,

I'm like you - I surfed the web, bought books and just generally crammed in as much information about the SCLC and caregiving as I could. Knowledge IS power. I could not, however, interest my Mom in much of the information at the beginning. She could handle the radiation and chemo patient guides that I got for her, but anything more than that seemed to be too much.

I definitely think that this was related to her fear of reading that her situation was hopeless. She, in fact, became extremely upset about one book that I bought her that I found useful, but she thought was terribly negative. It hurt me a great deal, as I had read the book differently

(it had given me hope), but I realized that her fear was talking again and that she was just striking out at the situation (grieving if you will).

One thing I've learned is that we all deal with adversities differently. Feed your thirst for knowledge diligently and give your husband some time - he'll probably come around at his own speed and when he is ready.

My thoughts and prayers are with you and your husband!

Kel

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When I was diagnosed with prostate cancer 9 years ago, I got a new computer and went on-line to learn as much as I could. I learned that not all "info" is good info and had to learn to differentiate. Now I still give info and support for prostate cancer, but am giving more than receiving.

When Lucie was diagnosed two years ago with NSCLC, Stage IV (bone mets), I again went on-line to learn what I could and get support. Lucie preferred not to go on-line, as it would be hard for her to screen info without it upsetting her and she was not able at that time to give support. She preferred that I go on-line, get the info and support, screen it for her, and then relay it to her. She still prefers it that way, and that is okay with me. She has, however, reached out to others locally who have LC.

I agree that it depends on the individual and how one handles stress and info. Good luck. Don

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You know now that I think about it, it was my husband who went to the internet first. He wanted to get info on all of what the doctors were saying. As he was worried that I had to have chemo and radiation before surgery, but he found on the internet the exact same protocol and that helped put him at ease. That first year I don't remember even thinking of going here myself, I think I had so much to cope with already. The doctors all gave me lots of info to read, there were cancer groups to go to , as coping with being bald etc. I was so tired, then recovering from surgery, then tired again from chemo. Never mind all the time I spent with treatment and doctor appointments. I guess my plate was full. Donna G

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I started searching the net within a few weeks of my first surgery, because what was happening to me, and what my doctors were doing did not make any sense at all. I had pneumonia that was not treated appropriately early on, and the surgeon and my former primary care doc refused to refer me to an Oncologist. Searching for answers has saved my life several times.

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Beth,

My husband only wants to know only what he needs to know, and only when he needs to know it. He wants to know where he's supposed to be for what test, what time, and how to prepare. He wants to know when the appointments are for the doctors, and I'd better not be late. LOL!! He doesn't ask questions about prognosis, etc., and will only ask about what's the next treatment or talk about a pain or discomfort he might be having, but even that is only at the doctor's prompting. His attitude from day one has been: "Treat it and kill it and don't bother me inbetween because I've got work to do." He has done no research, has no idea what stage he is and doesn't want to know. LOL!

Now me - HA! HA! HA! That's another story. I want to know everything, even what I don't need to know. We're quite a match. I have learned to just not say anything unless I have to, and have just learned to let him take the lead. Yes, we have talked about it from time to time, but believe me, he is in control of the conversation, and I take my que from him.

I know I'm not the only caregiver that has this situation. There have been other threads posted about this and you and I are not alone. If you are like me, you want to talk and talk and talk, and then talk some more, but I have to do it here, and not in my house. LOL!

Good luck. PM me anytime you want to talk about this.

Love,

Peggy

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Beth

My Mom was dx in June and she too has never attempted to learn anything at all about this cancer. She has a pc and is on it all the time, but playing cards. She knows that I am obsessed about lung cancer and if she ever has a question she asks me. I have tride and tried to get her to join a support group, come here, anything and she plain is not interested. Sometimes we talk, but its never real serious. She firmly believes that her treatment will get rid of the cancer, and although I am very hopeful of this also, I know the reality of it, and the possibilty that it will come back. I finally had to accept that this is just how she is, she has not changed since her dx, she has always been like this. She is a loner, doesnt care for visitors, actually has to even take a zanex when certain people come around, and always when anyone asks other that how she is doing, she will refer them to me for any further questions.

I have to believe that this is OK, because at 66 yrs old I dont think she is going to be changing her ways anytime soon. She is determined to beat this, has to right attitude, etc....so if she doesnt care to talk to others about this and have a support system, then so be it. I will say though it does get hard on me at times, being Im the only one she will let do anything for her.

Hang in there, maybe he will come around, and if ever you need a friend to talk to feel free to pm me as I love sharing anything i have learned.

You have found a wonderful sight, everyone here is so caring and knowledgable about lung cancer, and I know if Mom would give it half a chance she would be hooked as I am, but until she comes around I just tell her about everyone and everything here.

You and your family are in my prayers.

Kim

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My husband has only once researched or looked on the computer for support. He came here and signed up after about 6 months of me talking about this site, but he never posted. Since then he has stayed off of the internet as the statistics make him too depressed and he is really trying to live a normal life and not think about cancer every day.

Also, he knows that his father as well as myself are searching for treatment information tirelessly and he is in good hands as we will never give up looking and trying for him. He has too much stress and things to do to fight each day and he doesn't need to do the work of researching. We are his advocates and will take all the burdens we can from him.

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First off, let me clairfy that I'm not the caregiver, I'm the one who has been through the treatment. I just thought I'd add my experience with researching the net.

I was obsessed with it all even before diagnosis, and did the same thing when I was going through breast cancer diagnosis. In those first couple of weeks when I had never even thought about the possibility of cancer before, I looked all over the net trying to find justification that I couldn't have what they were suspecting I had. 80% of all lumps are benign, and I didn't even have a lump, I must be fine--how could this be cancer? Well, it was.

Then, with the lung mass--"most nodules turn out to be infections, or inflammations, or just cysts." That has to be what's up with me. I even went into surgery after the surgeon said that he felt my chances of a malignancy and coming out of surgery with a lobectomy were 80%, thinking that this was all a big train wreck that would never happen, and that since I wasn't coughing anymore and didn't have any of the symptoms I saw on the net sites, this is not cancer.

Anyway, my point is, that knowledge is power, but we need to take what we read on the internet just for what it is--stuff on the net. We also need to realize that we all don't have the background to interpret the studies and other things we read on the internet and apply them to clinical cases. My doctor cautions me all the time about that when I bring up something I've read on the internet about how my treatment should be going. Even my mom is always reading in a magazine or newspaper about those people who are long-term survivors because they have taken this or that and everything is ok now, so why don't I talk to my doctor about that?????

However, I also realize the need to be the captain of my own treatment team. I, after all, am the only one who hears all of these different conversations with all the different medical people because I am the only one who is there with them every time we are discussing my particular set of circumstances. I"ve had the tests and I have the results and I know what treatments I've had. I think everybody involved in my case needs to know all the details and that does include me. I'm the one who has the most at stake, so I do believe it's my responsibility to get educated and not just blindly accept what is being said and done for my health.

I am interested in what kinds of treatment others are getting and that's why I'm so in tune with this board, but as far as other information, I think sometimes it does me more harm than good. I think that a lot of what's posted on the net (not on this board) is out of date, and sometimes it's authenticity is questionable.

But as far as the personal "connection" with people who are experiencing the same kinds of things you're experiencing, it's the best support system I have found. This board keeps me relatively sane throughout all this, and during those times when I could have never faced going to a support group (heck, I could barely get up off the couch at times), I came here and read stories of courage and survival, and finally one day I decided that if those folks could recover and get on with life and live for years and years, then I certainly could too.

So, in that respect, the internet has been a Godsend. In other respects, sometimes I think I obsessed too much and did myself more harm than good with some of the stuff I read.

Cindy

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hi beth,

my mom is sort of like peggy's husband -- she just follows the doctors' orders, and she too has no idea what stage she is in (i don't think she even fully understands what the stages are). she just knows that she has to fight the disease, and that is all she really wants to deal with (which is enough to deal with!). i don't think that it is mostly due to fear (although of course there is a sense of underlying fear). i think it's more of a sense of knowing how difficult the situation can be, but not wanting to have anything negative lingering on her mind as she fights to beat this thing.

i, on the otherhand, am like so many others here (including you), endlessly searching for information. i have gone to every single one of my mom's appointments, and i directly talk to the doctors. i have even gotten permission to talk to my mom's insurance company, so i can call and talk to the representatives about my mom's case anytime.

i think it is definitely different for each individual. your husband is lucky to have you advocating for him. i wouldn't push him to log on or do research if he truly doesn't want to. but i applaud you for continuing to do so.

i wish you and your husband the best. take care.

God bless,

mj

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I was the caregiver and information seeker for my husband after his diagnosis. He never asked the doctor "how long" or inquired about any statistics. He seemed to block out the need to know anything other when his appointments and treatments were scheduled. I was constantly on the interent, at the library or a bookstore, or seeking information other ways. It seemed that most of the information regarding sclc was rather grim and non-hopeful, so I kept the information to myself and never shared it with my husband. I do think, if I were the patient, I would absolutely have to know everything I possibly could get my hands on. Just goes to prove that everyone is different in the way they handle things.

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Obviously, I was the information detective and the one in search of survivors. I don't know if my dad was afraid of hearing the wrong thing, or if it was the way he was brought up to trust and be confident in his medical team, or what.

He believed the stats at first. Heck, they came straight out of the doctors' mouths. He believed he would die, and just shut off for a while.

He had just been diagnosed and already we were grieving like he was dead and frankly, wasting precious time.

I searched high and low for survivors and their stories...found one or two...then this website went up and slowly people came and they cared and they shared their real-life experiences.

One of our very first members to sign up told me of a prescription her mother was on that increased her appetite. Our Onc. NEVER mentioned it. After I insist dad try it, he gained 24 pounds.

By then I had alot of survivor stories and alot of plan A and B's and whether any of it worked for him or whether any of it increased his prognosis- wasn't really the issue. It was the fact that there WAS hope. Thru all of this, the fear, the sadness, the helplessness..there was hope too. And I believe THAT increased his prognosis. KNowing there were survivors out there, people did live through LC, and knowing that he had someone to take control of his medial care and advocate on his behalf..

I think that is why people shy away from the information that is out there- either published or online. OR some patients don't ask questions when they are in the doctors office...they are afraid of what they will hear. And I don't blame them for that at all. Put ourselves in their shoes. Their energies and their courage go into just surviving those harsh treatments most times.

There are alot of folks with this dianosis that don't have any advocates or caregivers at all to do what you are doing for your husband. Be proud of that as I am sure he is proud of you and glad to have you fighting by his side.

My prayers for you both.

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ahmed was the 24/7 internet guy before he got sick.....i have always done my research on the net careful to use legitimate sites for info....

since his dx, i am the one who does ALL the research, i have encourage him to read stuff for himself but he leaves it all to me.... unfortunately i have seen my brave, strong husband go from being outspoken and proactive to quiet, somewhat withdrawn

even when we go to the doctor's office....he defers all questions and comments to me....this sort of wears me out, sometimes i wish he would share some of this responsibilty with me.... can be very frustrating....

Lisa

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I could have written Peggy's post EXACTLY............except it's my Dad, not my husband. Dad asks NO questions. When his doctor asks him questions, Dad looks at me. That is my que to answer for him. I wish he would talk more, but he won't. Sometimes I wonder what would happen if I didn't go to every appointment and every treatment with him. You certainly are not alone.

Angie

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HI Beth,,,, When my husband was diagnosed I read alot online. Bill didnt read anything at all. He went through alot of emotions and didnt talk about much of anything. I think he put his energy into the chemo and radiation and that was about all he was up for. I think it was normal for him to let me be caregiver and worrier, and he was the fighter. It worked well. It allowed him to concentrate on the battle.

Peace and prayers

Annjael

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Hi,

My Brother never asked a question . He didnt have a computer so that was not an option. He knew I was very involved here but never asked me anything about it. Anything that I printed out that I thought could help him I did and he took no interest. I gave these things to his wife and to him but neither read them. I think it made it less real to him if he didnt talk about it. He and I were very close but it was the one time in our life that a subject became difficult and that was very hard for me. I wanted to help what he had to have had for emotions inside but did not get that opportunity often. I guess that is the one thing that still lingers very much with me is that I picture myself shaking him and saying "Alan, Talk to me, tell me how you are feeling inside!!" Instead I treaded lightly and was selective when I saw the opportunity I grabbed it but not a lot was said about real feelings. I am not sure that he wasent protecting me (or thought he was) from his hurt and thoughts of leaving his loved ones.

I guess I am rambling but I was the hunter of information, never him!

God Bless You Both,

Jane

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Hi,

I read a little bit, but truth is I knew the prognosis was NOT GOOD, and I would just as soon not know until it was over. A year and a half later I did searches, and I am glad I didn't know then what I know now. That way, knowing nothing of the epidemiology, I was able to focus on myself as a population of one, with a statistic of 100%. I believed that I was a unique individual and had a unique situation, which I was going to respond to with the best of my ability.

I found out later the protocol instituted was cleared for general use at phase II 12 months, not phase III. I found out how grim the prognosis for pancoast tumors generally was. I found out how fortunate I was to be diagnosed so late, in terms of timing of treatment available.

What I did was spare myself more dark imaginings, more worries.

It helped me cope.

Whatever helps you to cope, please think about delivering unasked for information, and the effect it might have.

XOXOXOXOX

Prayers always,

MaryAnn

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My sister has always been an extensive researcher, but she doesn't like computers & doesn't have one at home. One weekend, just after being diagnosed, she went to her husband's office to look up treatment options, survival statistics etc., and she just felt too defeated & depressed, her husband was overwhelmed by the info., and she wanted to spare her kids. So, I do research for her, her husband accompanies her to all Dr. apptments., lab tests & chemo, and her kids provide moral support & errand running. My sister concentrates on feeling positive, and right now, enjoying her planned retirement trip before she has to return for 2nd line chemo. We all do what works best to help her, and mine is research, to spare her husband & kids.

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