A request from a patient
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I thought we had the Good News section already and the cafe.Everyone likes good news and feels relieved for people involved-we are all human.Those of us that didnt have much good news absolutely want things to be better for others.But things arent always better so thats why being forever positive just isnt real.Sometimes we are supporting people going rapidly downhill and its good to acknowledge that too and get on with helping in that situation too.
Its great that this board can manage to do this and as a health professional myself I have such admiration for so many who find the right thing to say at the right time bit long sorry JanetPatty, that was quite wonderful and gave me a real chuckle. Since Leroy is already taken I vote for “dadgum” disease.
Marion a site for good news would be great as I sometimes do feel a tad guilty when I post what a Miracle our Miracle Man is. My main concern is that no one feels stifled due to their adjectives.
Patty….it is very apparent in that the middle child is coming through in you. I love it.
I agree with all in that this board is quite unique in that it provides support for all and the expressions of thoughts and ideas are welcomed and encouraged; a true example of Freedom of Speech as guaranteed by the First Amendment. Overriding though, I see unsurpassed compassion and caring on this board.
Kristin makes a good point in that in addition to our rants and raves triggered by this disease, benefits may be derived from a special section for those people who want to share their fortunate circumstances. We have seen plenty of times where members are concerned about sharing their good news in the fear that they may be misunderstood or, that they may emphasize the misfortune of others. I believe that this is unfortunate and misplaced. We love good news. A section such as that would ensure for their threads not to be lost and, simultaneously it would allow those members to bypass some of the postings uncomfortable to them.
What do you think?
Best to all,
MarionFriends, Romans, countrymen:
Different people have different ways of psychologically approaching this disease and I would hate for anyone to feel that the board is not supportive.
Kristin, I think your doctor is very wise and should give classes on bedside manner.
Kris, it is funny what you say about families not always agreeing, I love mine but lord they drive me crazy sometimes!
I am a middle child so I am always looking to compromise and frequently I try to do that with a little humor. I love language and love “hearing” people’s accents in their posts and I know we have a lot of Southerners out there so this Yankee has a suggestion…how ’bout we call it EXACTLY what it is?
…this DADGUM disease!
Patty
Kristen,
I agree with Kris. You belong here just as much as the rest of us and your opinions are valued as much as all of the others. I too sometimes find it hard to come on, obviously for different reasons. I also sometimes hesitate to post as I feel I don’t want to be too negative, but thinking back, I found this site a few days after my husband passed, and I think had I found it sooner, I too would have wanted to know it all straight up, the good, the bad & the ugly. As Kris said, we are like a family. We need each other because of our connections to this disease and need to say what we want & how we feel. I guess all we can do is take what we want & leave the rest. I don’t know if this is helpful to you at all, but I too hope that you won’t stay away too long.
Darla
Kristin,
Oh no, please dont feel like you cant express an opinion!!!!! That was my whole point. This is the place were we can be ourselves, vent, complain, worry, cry, offer supportm advice, knowledge and comfort. If you dont like the terms people use, it is important we know that. I dont think any of us want to upset or offend another.We are a wonderful mix of patients and carers, each with their own perspectives and challenges. I know that I sometimes feel, not a tension, but a clash of perspectives. But honestly, I feel we are a family, and like a family we dont always have to agree with each other but we will always support each other.
I know that I had to take a break from the board last week. Sometimes you have enough going on in your life, enough stress, enough period. I had to get away from my cancer so that meant I had to get away from everyone elses too. If that is the case, you might need a break but come back soon. You are one of the great inspirations. Your survival and stable disease offer so much hope to others. Plus, you might need support and an ear too. So if you take a break, dont make it too long because you would really be missed.
Kris
No reason to sugar coat it…not for the patient or the caregiver. When my sister got diagnosed…the first thing I did was get on the computer for research. This is one of the first websites I went to and … yes…it was a slap in the face to hear how bad this cancer really is. But it also got my attention that you have to fight with everything you have from the first second you are diagnosed. I think calling it what it is makes you fight even harder. It has taken the people we love the most away from us so there are no other words for it than horrific, horrendous, awful, beast…whatever. Actually I have a few words for it..but they would not be allowed on here.
I’m sorry you are having a difficult time reading this. My sister could not have read anything on this website. It would have hurt her too much. So I did it for her. Sometimes that’s best.
Thank you all for explaining to me– but now I feel that it is not OK for me to express that opinion. I think I need to take a break from reading and posting here for a while.
Kristin
Kristin,
I am of a different opinion. I always refer to this cancer as a beast. I feel we all need to admit this is not an “easy” cancer. It is sneaky and difficult to treat. Stage 4 of some cancers are far better to have than Stage 1 cc. When I sometimes read peoples posts (including mine) I am a little thrown as to how unrealistic people can be. I think it is important that people realise the fight ahead. I also feel that the strength of this board is the openess in which we share feelings and experiences. I would not want anyone to feel like they were being censored or were did not feel able to express themselves.Kris
I think its important that everyone,patients and caregivers are able to express their feelings,be they positive or stressed or despairing.People need to be free to do that as that is the only way everyone can help and support each other. Janet
Blessings to you Kristin. Certainly not offended here. I think a more positive way of thinking and writing would be beneficial for us all.
Peace,
KarenWell put, Kristin. Certainly, you did not offend me. How does everyone else feel about the points Kristin has made? The input from all is of such great importance.
Thanks
MarionHi,
I would like to say this as gently as I can… but I would like to ask you all a favor.
Every day on these boards, I read people saying:
this hideous disease
this horrific disease
this appalling disease
this horrendous disease
this terrible disease
this awful disease
etc. etc. etc.As a patient, it is not very helpful for me, every time I visit, to hear that I have a hideous, horrific, appalling, etc. disease. And for a patient who is newly diagnosed, words like that must be especially frightening. I hope people can be mindful of this when they write their posts.
The last time I was treated, one of my doctors (a lovely Indian woman) said to me, “We both know you have a very bad disease, so we don’t have to talk about that. Let’s talk about how to help you feel better.” That was so good for me.
I know it’s really hard for the caregivers and loved ones– they feel angry, helpless, and a lot of other things, and they need a place to say all of that. I think we need a section that’s just for the caregivers, where they can feel free to vent and yell about anything they want. (and those who might be upset by that can just avoid it, the way I never look into the Grieving and Hospice Care sections.)
These boards are SO wonderful because we can be free to talk about everything that’s on our minds, big and small. I hope we can find a way to do this that’s helpful for everyone.
I really, really hope I haven’t offended anyone with this. I cherish and value all of you who post here. You’ve been a lifeline to me.
Thanks for listening!
Kristin
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