minpin003 Posted September 17, 2004 Share Posted September 17, 2004 I've been registered for a few months, but finally have logged in to find someone to "talk" to. My Mom was diagnosed with SCLC in may of 2003, and although she keeps surprising the medical staff, I cannot stay in Shanland, or my little world of denial, forever. Just this week she was hospitalized to receive 4 pints of blood as her hemoglobin was low-low due to chemo. The thing is Mom does not want to know her prognosis. She may have a feeling, she hasn't asked and hasn't researched, which has been helpful. It's to the point where I will be moving in with her in 2 weeks (the basement is almost finished being remodeled) under the premise that 1) I want to be there for her as much as possible and 2) to pay some bills. Mom is VERY independent and is having a hard time understanding the concept of not going to work. While it's good for her to keep busy, she needs to take care of her health first (she's a damn mule, I tell you!). She's only 56 years old (will be 57 this month), and I'm only 33 (will be 34 next month). I, along with her good friend, have spoken to the medical staff at the hospital. We know the dx. I'm having a hard time. A REALLY hard time. I am an only child, and my Mom is my best friend. And then there's my 92 year old Grammie (Mom's Mom) who will be devistated at the loss of her youngest daughter. I KNOW that I'm not alone (and Mom's not alone), which is why I'm writing this. Is there an online support group that exists, that I can come to while I'm looking for in-person groups? I can't do this alone. As much as I have the rest of my family, and my dogs and cat (they are my solace), I don't feel I can handle this. Quote Link to comment Share on other sites More sharing options...
Donna G Posted September 17, 2004 Share Posted September 17, 2004 On line support group? Yes we are where you need to be. I don't know about lung cancer support groups in Chicago. We have just a couple here in the twin cities. Welcome to our community, please let us know what we can help you with. This is a hard disease. Donna G PS we have several here in our group that have through treatment for SCLC and are in remission and doing fine 4 and 6 yrs out. Quote Link to comment Share on other sites More sharing options...
J.C. Posted September 17, 2004 Share Posted September 17, 2004 You found the right group. Keep us posted on your mother, her not wanting to know about the prognostic is OK as she is already surprising the medical staff. If she is stubborn, good for her, she will fight hard. J.C. Quote Link to comment Share on other sites More sharing options...
lisaRN Posted September 17, 2004 Share Posted September 17, 2004 dear minpin, i am so sorry to hear about your mom....my prayers are with you in such a difficult time.... i can relate to you when you say "...my mom....my best friend..." my mom is only 55 and I 36.... around the same age as you and your mom.... but in my case it is my husband ( my other best friend) who has the cancer.... the issue of prognosis always seems to lurk around us although we have NEVER invited it..... it crossed my mind in the beginning to ask the docs.... but i was always afraid.... i guess i didnt want any answers.... i figure only God truly knows the "WHEN" question....and for now i will be grateful for ANY time we have.... of course, sometimes when i am researching the disease, new meds, new symptoms, etc... i trip accross some statistics... at first they really bothered me, seeing the #'s i mean.... but although i am sure they are based on scientific data, i remind myself that individually #'s dont fit neatly into our scenario.... as far as the internet goes there is a ton of info out there re: statistics and prognosis if you are ready for that and are actively seeking the info...just be careful to visit legitimate sites for correct info.... the National Cancer Institute site is often helpful to me: http://www.nci.nih.gov/ the statistics for my husband dont look good at all.... but for me personally i am trying to stay positive and focus on the "here and now".... after all we never know.... there could be major break-throughs in lungcancer tommorrow.... i have to hold to my belief in miracles and that "it's not over 'till it's over" Regarding your question of online support groups, i am only using this one right now.... this is really a good forum for support.... i dont know of any others off hand but you might find some if you go to the: American Cancer Society: http://www.cancer.org/docroot/home/index.asp American Lung Associtation: http://www.lungusa.org/site/pp.asp?c=dvLUK9O0E&b=22542 or ALCASE websites: http://alcase.org/ I hope this helps.... please feel free to pm me if you just need to vent or something.... i can even send you my email address... I am sure others will post here soon and will probably be able to offer you more resources as well.... Many prayers and warm wishes... Lisa Quote Link to comment Share on other sites More sharing options...
TeeTaa Posted September 17, 2004 Share Posted September 17, 2004 Welcome to this place where no one wants to be. This is a great group here - I can't think of a more supportive bunch of people (aside from my great REAL family, that is!). I would encourage you to put a bit more information regarding your Mom's situation/diagnosis/treatments in your signature so that the folks here can be even more helpful. Good luck with your move - I tremendously respect your willingness make such a change in your life to help take good care of your Mom. Let us know how we can help you through this nightmare. Praying for us all, TeeTaa Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted September 18, 2004 Share Posted September 18, 2004 well hello courageous one.... I am so glad that you posted. I am also glad that you are reaching out for help. It is so easy to stay in denial. One of my brothers also had SCLC. I have NSCLC. My brother did not want to know his prognosis. However, he was so very, very sick at his diagnosis. He never did ask and the doctor told us, his siblings, that he should not be told until he asked. He never did ask, so we never told him. Which was a good thing. There was a PA who decided to "Pop" it to him and warn him to get his affairs in order. He suddenly became very sad, depressed and despondent. I was pretty angry at her for doing that. Your mom sounds like she is taking as good of care of herself as she can. I agree that we all have THIS day. This day is the gift. What the future holds for any of us, only God knows. It is very scary and challenging to watch someone we love be sick and scary not to know if we will have them with us for another day. I admire your love for your mom and your willingness to be closer to her. Just love the dickens out of her. I am one in the belief that this time can be one of the best for a dedicated family member. My dad said that the two most important times in a persons life are birth and death. They are both so very spiritual. It was a gift for me to be a part of my brother's journey to death. I was able to be a part of something that was huger than me. I was able to hold his hand and scratch him and love him up. And he let me. He liked it when I cried with him. He said that it made him know that I loved him. I am so happy to have the memories of loading him and his oxygen tanks in my car for afternoons of fishing. Those times spent with him and the giving I gave, I got back ten fold. Cherish your Mom and know that this journey is just that....stay in touch. We all need someone to rely on. That is a fact. Cindi O'H Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted September 18, 2004 Share Posted September 18, 2004 Minpin,This site is a terrific on line support group.There are lots of knowing and caring folks here .Welcome aboard. Quote Link to comment Share on other sites More sharing options...
paddy Posted September 18, 2004 Share Posted September 18, 2004 Welcome Minpin! Look no further. Here you will find a bunch of positive and caring people-take my word for it! Paddy Quote Link to comment Share on other sites More sharing options...
Fay A. Posted September 18, 2004 Share Posted September 18, 2004 You can do this...I bet you're going to surprize yourself. And I think your Mom is very lucky to have you. We're an online support group, and though none of us want to what has brought us together, we're all very glad to have found one another. So Welcome..you are among friends. Quote Link to comment Share on other sites More sharing options...
minpin003 Posted September 18, 2004 Author Share Posted September 18, 2004 Thanks to all of you for your kind words. I have to figure out how to put the additional info on (regarding Mom's tx). Quote Link to comment Share on other sites More sharing options...
stand4hope Posted September 18, 2004 Share Posted September 18, 2004 Hi Minpin and WELCOME! You have reached the "Port of Support". This is it. It doesn't get better than this, at least for online support, and probably even for in-person support. This is the Lung Cancer SUPPORT Community (LCSC) and that is exacty what we do. We support each other. I thought you might find this link interesting. It was a thread that was recently started here about how some lc patients want to know everything and some don't want to know anything. It is very enlightening: http://www.lchelp.com/community/viewtopic.php?t=10916 I think it will help to better understand where your mom is coming from. I liked the word "mule". That would describe my husband, too. Mule Man. LOL! One more thing. You can type out your mom's profile by going to the top of the screen to the word "Profile". Click on Profile and scroll down where you see "Signature". There is a box to the right where you can type what you want to say. Then click Submit at the bottom. If you don't like how it looks, you can go back and edit it anytime you want. Edit: Nevermind. I see you already figured it out!! Once again, WELCOME, and God bless you, Peggy Quote Link to comment Share on other sites More sharing options...
Justakid Posted September 18, 2004 Share Posted September 18, 2004 welcome- sorry you have to be here, but glad you have somewhere to go where people actually care! Good luck Quote Link to comment Share on other sites More sharing options...
kimmek Posted September 18, 2004 Share Posted September 18, 2004 Minpin HI and welcome, you have come to the right place for support, look no further. When reading your post, It was like this girl is talking about my mom, eerie....My mom is the same way, independent beyond words, and doesnt want to know a thing other than when she needs to go for treatments and dr appts. She knows i have become a lung cancer junkie and will have the answer or get the answer to any question. Its just easier for her this way. No problem for me either. Hang in there, as i know you will find this sight to be a life saver for yourself. Pm me anytime if you want to talk, im hereand short of speaking for the others, im sure they all feel the same way. we are here for you. You and your mom are in my prayers, god bless Kim Quote Link to comment Share on other sites More sharing options...
SJAS Posted September 20, 2004 Share Posted September 20, 2004 Minpin, You just hit the motherlode of support groups. This family is here for you 24/7 and we are an awful lot like a real family. Lots of love and support and a few warty moments now and then, but a real treasure trove of information and caring. Hope to be hearing lots from you. Welcome Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.