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Chat room disaster

amber44
Posts: 3
Joined: Jul 2007

I am very new to this network. I found the website after searching the net for awile. I have been very isolated since my operation, and recovery. The pain meds I take, mean that I cannot drive, and have to rely on my husband to get me to doc appointments, and so forth. This has caused me to experience a great deal of depression. Finally I thought maybe there was a source of support using the net. And it does not involve driving somewhere. The isolation was really getting to me.

As I am new to this, I do not know what the "norm" is. My first time in the chat room was fantastic. People all so kind, and supportive. My second time was not. After a really bad day I thought I would try the chat again. My surgeon is not giving me any follow up for my lung cancer, and does not want to give me pain meds either. I am left without a doctor at all now, and it is quite scary.

Then, in this chat room, for survivors and caregivers, I am accused of faking having lung cancer. That I am trying to get their attention and sympathy.. Because I do not know the type of lung cancer, just slow growing, they said that meant I was lying. In addition, because I am underinsured, my treatment is not the same as a person with good coverage. This I was told was another lie.
I felt so bad after that. I cried for a long time, and felt like I had no one, not even other survivors. It hurt really really bad.

Do people actually go in the chat rooms faking cancer? I am afraid to go back in, I feel really fragile emotionally. Maybe some people do not know that health insurance does dictate the level of care they receive, or not receive.

What do I do? Does this happen a lot.? If so, I do not want to be a part of this network.
Maybe some people would fake having cancer. I would love to not have to deal with cancer, but I am stuck with it.

davidsonxx's picture
davidsonxx
Posts: 137
Joined: Mar 2007

I am sorry that that happened to you. Unfortunately there are weirdos out there that do come into the chat room and fake their cancer. It doesn't happen that often but makes everyone a little distrustful when it does. I would encourage you to fill out your personal web page. That way people can get to know you a little better. Please remember that the chat room is open to everybody. Just as you don't like everybody you meet in person and you won't necessarily like everybody you meet in the chat room. Don't let one bad experience stop you from getting the support you need.

My situation during treatment was similar to yours. I also could not drive and was very isolated. It is hard to fight the cancer when you feel so alone. Hang in there. If you don't want to try the chatroom again you can email me here on this site.

mark7
Posts: 23
Joined: Apr 2005

AMBER44,what you need is trusting something much bigger than you,its the LORD.HE has put help
WITHIN YOUR REACH.there is help from the acs.just call the toll free no. that you see on this site they can direct you to a support group in your area,they will guide you to the help and support that you need and your faith in THE ALMIGHTY GOD WILL BE HELPFUL.keep in touch GOD BLESS YOU.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

davidsonxx puts it very well. I know that the first time I came into the chat area, I was affronted by two things: the first was the fact the people didn't seem to be talking about cancer at all; the second was that I felt I was being intensely grilled by one or more of the people, as if I were a criminal of some sort, rather than someone, like yourself, looking for others to talk to.

Now, more than a year later, I understand very well what happens when you come in and why it sometimes happens that it is a very unsatisfying experience.

Like you, apparently, I didn't ask a lot of questions about cancer when I went through my initial ordeal, the surgery, the radiation, the chemotherapy. It did not matter to me what was in the chemo cocktail - as long as it worked. I didn't care what the scientific name for the radiation treatment was - as long as it worked. I didn't even care what the world called my particular brand of cancer - as long as the guys and ladies in the white coats got rid of it.

In the chatroom, however, they (we) use knowledge of such details to help screen the site from the weirdos, as davidson describes them, and the researchers posing as survivors or caregivers. The irony, perhaps, is that the weirdos and researchers are the ones who will go to the internet and find answers before they come in, while innocents such as yourself will not.

In any case, the chat room is a great place to meet people and to discuss your issues (and recipes...food seems to be a common vein of discourse :)).

I hope that you will not let one trip to the site dissuade you. If I had let that be the case, I would have missed meeting a great group of people, many whom I now consider true friends beyond the digital world we talk in.

Please give it another try.

Take care.

TereB
Posts: 288
Joined: Apr 2003

I am very sorry about your bad experience in the chat room. They are usually pretty good at giving support and they are also alert to people that come in faking having cancer because it has happened before.

I've never had a bad experience there and whenever there is something I don't like, I just leave and come back some other time. Like anywhere in the world, some people are nicer than others. I know some of them like to question the new ones very much. I have met great people here that have helped me when I don't feel good or tease me when I am fine, without mean intentions. Sometimes we talk about cancer, treatments, feeling rotten, etc. and other times we go silly and make jokes about ourselves. I confess I am one of those that sometimes go crazy being silly. When you have cancer many people are treated "seriously" by family and friends because you are ill so many times it is a relief to be able to joke and laugh about our situation.

I suggest that you give it another try, not all the survivors and caregivers are there at the same time, they all come at different times.

In the meantime, if you are depressed, check with the oncology dept. because many times they have social workers that can help you. A support group for you type of cancer can be helpful too.

All the best

nsquirrely
Posts: 50
Joined: May 2007

I am truly sorry you had a bad experience in the chat room. I was not there that time but hope that you can feel welcome to come back . There are many caring people here. None should be accused of lying about their illnes. We have noway to distinguish the truth from lies. I just assume that people are honest here. Good luck with your health problems.

amber44
Posts: 3
Joined: Jul 2007

Thank you to all who took the time to read my message, and respond with such caring thoughts. I really appreciate it. I am going to create a personal web page, and see if that helps me connect better with people.
The day I had tried the chat room had been really hard. My surgeon informed me that because my operation was four months ago, he could not help me with the existing pain I am in. My regular doc said, oh no its not my area, its the surgeon. Anyway, I write this as I was feeling very defeated, and vulnerable to begin with. I think if I had even an okay day, I would of reacted much differently.
I hope that I can connect with people not only to get support for myself, but also to give support to others.

daddysgirl33
Posts: 4
Joined: Sep 2007

Amber, I suggest getting in touch with a pain clinic to help manage your pain. My father had Pancriatic cancer and was given a morphine pump implant. This really helped him. Also look into home hospice. they can help any home care needed, even if it is just advice. this could also benefit your husband.
God Bless
Barbara

janinemah's picture
janinemah
Posts: 53
Joined: Feb 2006

Hi amber,
I remember you from the chat...I came it late to the conversation. I beleive you!..I'm sorry you were so unfairly judged, I dont understand the whole "they are here for research" problem..after all arent we all? all I know is when my mom was sick I needed information and like minded peoplem,the chat was one place i found it. the good people out weigh the "offending" ones, so do give us another chance. I hope you are doing well in your recovery and found the help you need.
Janine

Eil4186's picture
Eil4186
Posts: 967
Joined: Dec 2007

Amber, what does your surgeon mean,"its been 4 months, I can't help you"? I had my surgery 2 and 1/2 years ago and I still see my surgeon for follow-ups. I saw him every 6 mos for the first 2 yrs and I will continue to see him annually through year 5. This is pretty routine I thought. I see my radiation doctor just as often and of course my medical oncologist every 3 months still. Cancer survivors are closely monitored for recurrence and side effects for years.

terato's picture
terato
Posts: 384
Joined: Apr 2002

amber,

If chat room users make someone else's life more miserable, they should be ashamed of themselves. Some people have no credentials themselves, other than having been patients, yet they sound as if they know what everyone else "should" be experiencing. Everyone's case is different and everyone is entitled to respect. I am sorry if anyone associated with this site ever added insult to your injury. Just write them off for the inconsiderate idiots they are, and know that they don't represent everyone who visits the chat room.

Love and Courage,

Rick

dn220's picture
dn220
Posts: 79
Joined: Sep 2007

Amber, I am so sorry that you had those kind of experiences in the chat room. I have not been going there very long myself but so far everyone I have met has been very,very friendly and helpful. I also had the same problem with medical care with not having insurance but my doctor found my cancer in Jan when I went in for kidney stones and did not tell me about it until i got sick in May with a totally different mass on the other side(which they also found in Jan, but did not tell me)that doctor has been absolutely awful to me all the way thru and has been very,very mean about my bill but my other doc was right the opposite and didnt even charge me for his services and has given me money to help me out so it does happen to people without insurance or with inadequate coverage. I hope that you will give the room another chance, I think u will find some very good people on there. Go to another doc or to the ER and get some more meds for your pain, surely there is someone near u who will take u as a patient and give u decent care, have u applied for disability? or medicaid? Anyway, good luck and I assure you there are bad people everywhere but there are also some very nice people in the chat room. Debbie

praying2's picture
praying2
Posts: 4
Joined: Aug 2007

Hello Amber, I am so sorry that you had a bad experience in the chat room. When I was fairly new, I didn't know the "lingo" and I couldn't remember the type of chemothereapy I had - I had to go find my paper that had all the information on it, and I felt isolated and that some people didn't want to include me, so I quit. I as very lonely and depressed and was reaching out for help through this chat room. I just wanted someone to talk to and to listen to them, too. After a while, I gave it another try. Please keep coming back and you will find there are many people that truly do care and want to be there for you, and that includes me. I want to be your friend, and I care.
I guess we are all different people with different personalities, but when we hurt, we hurt.
I care about you and your situation and will be praying for you.
Wamrest Regards,
Enie

egtmcsq
Posts: 5
Joined: Jun 2007

hello amber sorry to hear you had a similar experience to me,i came to this site hopefully find help and support whilst i was trying to move from o christ i,m finished to i,m going to be ok ,at first it was fine ,then over a period of two weeks things changed,things were said by apparently long standing members of this network,such as i did,nt have a real cancer and that i must be bored; i was british moaner; there were others present in the room when these things were said,buy this time i did,nt even want to set up a web page,never mind come onto the site,there are some great people on this site but sometimes when people really like something they will defend it,when actuallyit might be a better idea to start asking questions who are all these wiedos where are all these researchers what are they researching ,people can,t tell the difference between these people and the genuine article,soory i dont buy it,my experience is that there are some members on this site have set themselves up as some kind of half assed vetting group and people who for whatever reason dont fit in are made unwelcome the very people the site is tryng to attract leave,dont just take my word for it i know of at least two others that have left for exactly the same reason,i come on this site very infrequently now , sod em i did,nt come on to this site for an arguement or to be constantly defending myself

mjann
Posts: 4
Joined: Oct 2007

I regret you had a bad experience with chat. I am new to it, but mostly I too notice folks don't talk about cancer much; however I second others' advice to you to seek help at your cancer clinic or wherever you can regarding your treatment from here on out, isolation & depression. Best to you in this search and don't give up. I think this site may be able to help you too. Hang in there and it will change.

donaldo's picture
donaldo
Posts: 36
Joined: Nov 2006

I hate to see anyone treated badly on the chat sight site. I don't think it's anything you said that got them attacking you, rather as you can get on any chat site, it was the presence of someone not in their group. They probably were using the site as a personal rather then a public chat site and wanted to run off anyone that's not in their group. I don't really like those sites because of that. If you really want to talk to supportive people, use these message boards to introduce yourself with captions such as "new girl", and such. When supportive people answer your messages start emailing them and get your own conversations going. You already have a good supply of potential good friends started with just this one message. Post messages on a few of the other boards and you could really get a good supportive group of friends going. If you create a personal web page as davidsonxx suggested, even more will find you. One word of caution though is, from looking at the different boards, I have noticed alot of people are very clickish by type of cancer, situation, etc. so you probably only would want to introduce yourself on sites that pertain to you. Personally I feel cancer is cancer, so I don't get the clickishnes.
good luck and hang in there.
don

i-miss-rikki
Posts: 1
Joined: Nov 2007

A NURSE IN THE EMERGENCY DEPT. WHERE I WORK HAS BEEN ASKING CO-WORKERS IF I REALLY HAVE CANCER.
I MUST BE DOING SOMETHING RIGHT TO HAVE HER QUESTION MY DIOGNOSIS. I GUESS I DON'T LOOK SICK ENOUGH!!!!...I HAVE INCURABLE STAGE IV BREAST CANCER...5 DAYS AGO I HAD MY RIGHT BREAST REMOVED..YES I REALLY DO HAVE CANCER, & I DON'T NEED TO PROVE IT TO ANYONE!!!

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

I am so sorry for all you are going through with the illness and then on top of it to have someone question if in fact you have it or not is just obscene. Actually I had someone today infer I was making things up too, it's just unreal. I don't know why people do this, insecurities in themselves I guess or maybe it rings true for them so they thing everyone is doing what they are in embellishing or making things up. People are strange. Be true to yourself and that is all you have to concern yourself with - you have enough on your plate you don't need negative people. You are so right when you said 'you don't have to prove it to anyone'. A prayer to you and may God Bless.

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Hi Amber, I was really upset to hear that you had such a negative experience in the chatroom when you had gone there to get help and support. I must say though that in chat there seems to exist a whole new set of rules for communicating and oftentimes intentions and ideas become blurred through this type of communication. Some of the reasons for that are the absence of visible cues like facial expressions or intonations that we have to help us understand each other face to fact. Words are only words and sometimes in chatrooms of any kind things are misunderstood and then from there only disaster can result. Also in rooms that deal with potentially life threatening personal issues feelings can be raw, all the way around, so if you come in on a day that perhaps is ultra sensitive to those in the room at that time things can get explosive. I have personally experienced many different types of chat and found these things to be true and now try and take chat with a grain of salt, use some of the info that seems to ring true with you and discard the rest. Mostly I have found this chatroom for survivors and caregivers of great help and most of the people in it are true caring souls who have been dragged through the mud and back and truly understand, as many of our friends and family do not, can not seeing they haven't been through it themselves as a patient. In this room many have been through it and that input can be invaluable to someone like yourself who is searching for kindred spirits. I hope you give the room a second chance and remember when you go in that any chatroom is only as good as the people who are in it at any given time and too remember they are fighting their own battles in their own ways as well and sometimes their perceptions may sometimes not be true for you. Try not and judge, come and go as you feel comfortable with it and take it for what it is. I am sure you will be welcomed with open arms by most of the people in this chat. Remember - chat is an imperfect form of communication, many wrong impressions can be made with only a few simple words. God Bless.

norar
Posts: 2
Joined: Nov 2008

I just want to comment i won't be going into your chat rooms. Why do all of you have such chips on your shoulders. I don't remeber all my details it's been 11 years i don't care if you are all afraid of fakes or researchers shame on you all!! This is so typical of amercian cancer society thoughts. i won't be back here. look how you beat up on this jack. people have a right to their ideas. and yes i have had stage 3 breast cancer at 37 and uterine cancer i am now near 49 is that enough cancer for you all.

Cancer patients face enough problems from the world from discrimation to troubles with insurance, to long term problems with treatments , that doctors never tell you about.

I will not be back and I can bet this will be deleted

just because you had cancer you don't have to turn on new people alot of you are very unwelcoming and just rude

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