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Sheri

Small Cell Lung Cancer

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I feel the need to reply. My mom is in the middle of treatment currently for her Limited stage SCLC. Her esophagus has been burned from twice daily radiation for three weeks. Throw in nausea from chemo. SHe is in a lot of pain and trying to fight with all her might. I believe in her treatment and I believe in her strength. She is amazing woman. I came to this site for encouragement and hope. I know all the dismal facts but I choose to have faith. I read this post and for a split second wondered why she was enduring so much pain if the end is inevitable. Then I continued to read and my hope was restored. Thank you Geri! I have to believe and have hope and in the mean time I cherish every moment I have with my mom. I have to continue to have hope and will continue to hang on!!!

Dana

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I guess I need to come back again and explain why I posted what I did.

It's not that I didn't know or didn't want to know what was written, I've lived with all that for 5.5 years, what I didn't like seeing was this sort of negative subject matter in a forum that is routinely read by sclc patients currently fightly for their lives.

I didn't for one moment think that the caregivers weren't qualified to write about this, but I do think that most of the survivors know what they face and don't need to have it put so bluntly. When I first went into remission I worried about a recurrence and the last thing I needed to read was that if it came back I was toast, I didn't need any reminder of the negative side.

I'm not saying that these facts shouldn't be posted, I'm saying that we all need to be aware of our audience. What caregivers or long term survivors can say to each other is sometimes very different than what we need to be presenting to people still fighting, we need to give them a reason to keep fighting not a reason to give up.

That's all.

Geri

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Geri,

I agree with you - both times. I find, however, I'm at a loss of words and can't seem to type anything worth posting. Just wanted to show my support to one of the "old guard".

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Geri

I agree with you. When I first came here after my moms dx I had already done research and knew what the eventual outcome would be. I knew all the stats and what I needed was some inspiring stories. I needed to hear the stories of hope and the positive things so I could retell them to my mom and say "hey i just heard about so and so who has been fighting sclc for however many years so there are people who can survive this so lets fight a little harder". I feel like I now belong mostly in the grieving forum because I dont want any newcomers to see that my mom was only around for such a short time after dx and get discouraged. I think we need to stay positive and remember who will be reading what we type here (and I am positive that if it were not for the great people here I would have been a basket case.) People dealing with this need to have some hope and if we can give it to them then we should do just that.

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Even though it is important to be armed with knowledge as to what you are dealing with, that information exists all over the web. I have a driving desire to be an advocate for cancer research and awareness but at the same time understand from personal experience that we need a refuge from all of the cold hard facts that smack us in the face everywhere we look, and that refuge is here. I think we need to be gentle, compassionate and supportive while offering answers and information.

I am certainly not trying to pass judgement or be hateful. I do hope your dads results are great. I think that this post probably got way out of hand for what was intended. I know that when my hubby was first diagnosed, we needed some of the statistics and facts in small doses so as to digest without too much fear. I guess that probably sums up what I am trying to say. Please keep us posted on your dads results.

Peace...Flowergirlie

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I don't think anyone intended this thread to be a downer. I think the main purpose was to highlight the fact that SCLC is underfunded because it's perceived by the medical/pharmaceutical community to be a disease brought on by one's own habit - that being smoking. I thought that Sheri's post was somewhat negative in that she was frustrated but I got it. My mother was hardly a heavy smoker - mostly social (with a glass or two of wine in the last 10 years), but yet she got SCLC.

There are no decent clincal trials and because it's considered a "rare" disease these days - it's embarrasingly underfunded. I think one person raging against the machine in frustration and anger is not tantamount to hopelessness.

It's a slippery slope. My mother died this past Monday, 7 months after being diagnosed with SCLC. I hemmed and hawed about telling anybody about this on other support groups because I didn't want to be bring anyone down - but then again, what is the use of a support group if you can't be honest and open? She got dealt a bad hand. I'm mad...I'm enraged, in fact, because there are no new treatments or even anything on the horizon that could have done anything for her. And why? Because...she did this to herself????? I only wonder if this is the sentiment in the medical community. As a nurse - I question the ethics involved in funding and research of particular forms of cancer.

It is what it is - right now. But if we continue to raise awareness and speak out about the facts of treatment modalities of SCLC - we can *all* make a difference. No one should be castigated for expressing their frustrations - and no one should expect anyone to walk on eggshells on a support group that encourages thoughts about what they or their loved ones are going through. It's tough enough, but to try to put in a fancy package wrapped up in a bow is false and misleading and does no one any good.

Just my thoughts. I bore the burden for my mother for 7 months as to how horrific her disease might turn out to be - and she had it bad from the beginning. I was willing to do this for her piece of mind and for her not to give up hope. I know there are survivors of this disease - I prayed that she would be one of them. I urge everyone to fight for funding for Lung Cancer - and SCLC in particular. It's a travesty....

Leanne

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I know that politics should be avoided on this site, but many people on here talk about cancer funding. The truth of the matter is that most research is conducted by the NIH (national institute of health) and is funded by tax dollars. The current federal budget is heavy on military spending and light in every other area and it doesn't look like it will be changing any time soon. Couple that with a general aversion to tax hikes and the future for researching cancer breakthroughs is not very bright.

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Well, I Do Not believe anyone here is being "pummeled" with news of Small Cell. As a full time caregiver and only child, I was with my Father 24/7 and I was in the hospital every minute where I traveled his last few days of life with him. March 13, 2007. I might write a book about the 13 month journey we had fighting SCLC. People need to know. My Father was what I feel to be text book small cell. DX'd Extensive, chemo greatly reduced tumors, recurrence, brain tumors, radiation and I think we know the rest. I have not been on this site since he passed. What made me click on this topic first I wonder? I love and always have loved, what Don has said. I can remember conveying to my Father about "this guy" on a site that said "fat cows don't die!" Ofcourse we want positive attitudes and prayers to be answered. I think this post has gotten way out of line and see it as maybe a well-needed jolt, reality check, eye opener. I appreciate it and understand where you were coming from. Sometimes I have noticed that being a cheerleading squad leaves a person- Dx'd, caregiver or otherwise- a feeling of confusion especially at the beginning of the journey when you just want others who have experience with small cell (or other cancer) to translate and share their thoughts, feelings and experiences. It can be difficult to read between the lines. Thank you for the post. Just my thoughts.

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I personally appreciated reading Sheri’s post. As someone who is dealing with a loved one with this horrible disease it was a breath of fresh air. I appreciate the honesty about it. The stories of survival and hope are nice - but the cold hard facts are much more appreciated. I actually take offense to the negative posts I had to read after her initial post. 

And Teri - I believe being pummeled with you will be cured posts aren’t realistic in most situations.

I know this is from years and years ago, but I had to post my appreciation for her honesty. Just had to post this. 

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Gosh how long ago - the people who have been here before us.

I wonder whatever happened to them - are there any still with us. I hope only the best for them.

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