Just a thought

15 years 9 months ago - 15 years 9 months ago #19555 by Gene Beane
Replied by Gene Beane on topic Just a thought
Holly and friends,

I understand Holly that you are in a scary place. I do understnad that you would like to be able to share those feeling with others that are in your shoes, without hurting the feelings of others on the forum or scaring them with ones thoughts. You asked if it is appropriate as you don't want to frighten those who are in invasive or in mets, with your feeling and thoughts.
I do NOT know how you feel of course, I can say that after diagnosis my husband had many moments that you speak of. Reason being no one knows really until that all important PATH REPORT.
My inference to Susan has been taken out of perspective. I am speaking of her reluctance in the beginning to even jump on board here to share ANYTHING. She was apprehensive at best, she and I shared pm's about the forum until she finally shared her whole story, I am pleased that she did as we all learned something from her and her journey. She wrote a post, something like I scared, frightened .....as to where she goes from here. Since she shared much of her inner thoughts with you, could relate with you,then you both benefited from this relationship, you had a friend who you helped as well.
My point was, DON'T BE AFRAID TO SHARE, which were my words to Susan,we
we are here to offer support, whatever your feelings, remember on one post she warned readers before reading, perfect solution, I admire the fact it concerns you that others may be upset.
Yes , Gene and I are doing well, I won't apologize for that, our life has changed in many ways forever, I have compassion for you and your situation, and only hope AGAIN, THAT PRAYERS AND THE HELP OF THOSE DOCTORS
IN THIS SPECIALIZED FIELD WILL BE ABLE TO HELP!!
And Clara, I CAN relate to her in alot of ways, okay her husband is not doing well at this time, IS IT REALLY SO BAD TO GIVE HER SOME POSITIVE WORDS OF ENCOURAGEMENT. The same words I was given many months ago by others. I DON'T THINK SO!! Sorry you took it that way..
Eight months before b/c my husband coded in the er with a heart attack, I was asked if I had power of attorney. Shockingly I said yes,
we escaped deaths door only to get b/c,,we have been many places in our thoughts as well,,,,Ginger

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15 years 9 months ago #19549 by Julie
Replied by Julie on topic Just a thought
Holly, I think a way of having a forum discussion that is for people with mets only is a good idea. You are right as a Caregiver i don't understand what it is like for Dick. I know what it is like for me. Which is why I post those things on the Caregivers forum.

I am wondering if the groups are a way of having that place. I don't know how they are to work and from what Cynthia said they are not set up yet.

It must feel like a risk to put your real self out there for people to comment on. Thanks for telling us what worries you. Julie

Volunteer Coordinator
ABLSC

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15 years 9 months ago #19541 by mznoregrets
Replied by mznoregrets on topic Just a thought
Hi and thank you. I feel heard, and indeed validated. When you are fighting a battle you are not likely to win it matters to be heard and validated more than ever before. Life with mets is very unpredictable - Claire was gone in a blink. For what it is worth, I feel strongly that this painful thread is going to help those of us at this point in the fight - to heal emotionally. Come to terms with what we are living. Susan had peace, she faced some of her fears with me, and I also greatly benefitted from her sharing. I want that peace for me, for all who are in this scary place. Thank you for hearing and understanding so distinctly Cynthia and the others, too. God Bless, Holly

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15 years 9 months ago #19540 by Sam91403
Replied by Sam91403 on topic Just a thought
Holly
I have great respect for you in expressing what you are saying. I understand the need to release our feelings and have them accepted without someone trying to take away their validity by trying to make us feel better. I noticed that you haven't talked about your health since you posted you were going to see the doctor for an evaluation. I was concerned that it was something you weren't ready to share.

I agree that it would be most beneficial for those with a specific need to have a place to post with people in a similiar situation without onlookers. I would hope the forum can provide for people in need of that without worrying about people that MAY one day need the info. I think you expressed yourself very well and it wasn't difficult to read between the words in your first post. There are times for positive words and times we just want to relate to others in the same boat. I know people are trying to be helpful but it doesn't always work. Hopefully I haven't offended anyone.

Good luck, Sam

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15 years 9 months ago - 15 years 9 months ago #19538 by Cynthia
Replied by Cynthia on topic Just a thought
One of the biggest things I am sent emails about it about how do we make it so that all the people in our community are having their needs meant. For the newly diagnosed just being told to take a deep breath helps and knowing that others are here and have walked the walk. If you have an RC it has its own set of issues body image, sexuality, and fear of what the future may bring. And we are all grownups here and know that not everyone will do well this is a cancer support site. Now the question here is how do we as a community serve everyone’s need?

A part of that is recognizing that there are varying needs depending on where your path leads with blc. One thing that I had trouble explaining to my husband was that I had a need to vent to say what I really was feeling. I kept it all inside for a long time because I did not want to hurt him with these dark thoughts the what if it wasn’t ok. I could not talk to my family because no one would really listen they didn’t want to hear it; it would be ok, I was going to be fine. And I was not a child who could feel safe just because someone told me it was so. And I was just dealing with the what ifs in my dark place. Holly’s frustration is she just wants to have these conversations in a real way with others that talk back and understand that these dark places exist. As soon as possible I will be setting up the groups so that Mets has a place that survivors can post and not worry that they will scare others or be told it will be ok. Where they can say what they want and not worry about the intensity of it hurting or upsetting others as they try to cope. We all want to fix things and we cannot always sometimes just listening is all that is required. This does not mean that there is not a place for the chins up and you’re in my thoughts there is.

As I was saying the challenge here will be how do we make sure everyone’s needs are meant? It is hard for the administration because how do you find balance? Someone gets upset because women are posting in the men’s area and they are embarrassed to post there now. But the next guy might hear just the right thing from the wife’s perspective in the next post. People talking about RC’s scare the person with non invasive. Another receives a new perspective when they read about someone with struggles much worse than theirs. I am sure that no matter how well meaning what I am writing is I will get a few nasty grams out of it. This is not a perfect world and this site is not perfect heck if the world was perfect we wouldn’t need this site. All we can ask of each other is to be there and try to understand even when it is hard.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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15 years 9 months ago #19534 by mznoregrets
Replied by mznoregrets on topic Just a thought
Hi Flamenco,

Thank you for recognizing the depth of the post. Please know that I think there is a place on the forum for all of us...those with noninvasive have fears and concerns that others in the same boat are best to share with. Your needs are no less important than mine. What Karen and Clara need as caregivers is also just as important, too. And yes, there is a deep compassion for us all here..cancer sucks.I do appreciate the sensitivity and your compassion, too. God Bless, Holly

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