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Oldtimers Need The Forum Too
It was brought up again yesterday that some people believe that the forum is really only for people currently treating so I thought I would explain why it is that alot of us old timers are still here and why we need the friendship and commraderie too.
Aside from the fact that indeed if the old timers did not post there would be nobody here to learn from, no one to ask questions to and expect an answer that you can trust, nobody to delve deeply into studies and explain in plain old simple English what they actually mean (I can never read that scientific mumbo jumbo)...
You see treatment might seem to be the end of the world but honestly, mostly, it is just an inconvenience compared to other things in life. You see treatment has a start date and an end date and you CAN if you are lucky beat this disease and then it is over. For others though - they need this forum because they have already treated but it did not work and they continue on again bravely fighting for their lives. They NEED to be here often times more than a new person starting out because they know how vicious the gamble can be and they have so much more riding on it because they know what it feels like to really relapse.
Over the course of my own personal treatment the friends here became as important as the knowledge that was given. When I was in fear of losing my job because I was so ill (like when my hemo went down 6 points in only ten days), it was the folks in here that I could talk with about it - who understood exactly what that felt like and were able to relate their stories to me to calm me down and give me hope that it would get better. People in my every day life could not understand what it was like waiting for the Procrit to work, but the guys in here - they sure did. When I had just finished treatment and woke up to find police banging on my door and then seeing my husband hanging dead on my front porch - it wasn't something I really wanted to talk about very much but again, the people in here let me cry and vent and never judged or were nosey - just supportive and understanding. My friends in here helped me to calm down enough so that I could help my children - my children who just watched their mother pretending she was fine for two years and pretending that treatment was really no big deal so that I could protect them from the worry that I was going to die, just like any good mother will do. But of course as hard as I tried they always thought that I would. Then their father did. So not fair. I could go on about tx bad luck and post tx bad luck all day but you get the gist.
The forum also gave me a place where I could feel useful during the dark times. A place where I could give back what I had received. Where I could feel that I was helping someone else walk through the treacherous jungle that treatment really seems to be when you are new.
So why are we oldtimers still in need of this place? Because as horrible as treatment might seem to be at the time - you can put it into a box and move on but life continues onwards. Post treatment illness can be more devastating than the treatment itself. Who if not the people in here understand what that is like?
So forget all about the fact that we come in here to help - we do. But there is so much more.
I hope this might bring some understanding to the situation and we don't ever have to hear that we're not as important as people currently on treatment. We are.
Debby
Aside from the fact that indeed if the old timers did not post there would be nobody here to learn from, no one to ask questions to and expect an answer that you can trust, nobody to delve deeply into studies and explain in plain old simple English what they actually mean (I can never read that scientific mumbo jumbo)...
You see treatment might seem to be the end of the world but honestly, mostly, it is just an inconvenience compared to other things in life. You see treatment has a start date and an end date and you CAN if you are lucky beat this disease and then it is over. For others though - they need this forum because they have already treated but it did not work and they continue on again bravely fighting for their lives. They NEED to be here often times more than a new person starting out because they know how vicious the gamble can be and they have so much more riding on it because they know what it feels like to really relapse.
Over the course of my own personal treatment the friends here became as important as the knowledge that was given. When I was in fear of losing my job because I was so ill (like when my hemo went down 6 points in only ten days), it was the folks in here that I could talk with about it - who understood exactly what that felt like and were able to relate their stories to me to calm me down and give me hope that it would get better. People in my every day life could not understand what it was like waiting for the Procrit to work, but the guys in here - they sure did. When I had just finished treatment and woke up to find police banging on my door and then seeing my husband hanging dead on my front porch - it wasn't something I really wanted to talk about very much but again, the people in here let me cry and vent and never judged or were nosey - just supportive and understanding. My friends in here helped me to calm down enough so that I could help my children - my children who just watched their mother pretending she was fine for two years and pretending that treatment was really no big deal so that I could protect them from the worry that I was going to die, just like any good mother will do. But of course as hard as I tried they always thought that I would. Then their father did. So not fair. I could go on about tx bad luck and post tx bad luck all day but you get the gist.
The forum also gave me a place where I could feel useful during the dark times. A place where I could give back what I had received. Where I could feel that I was helping someone else walk through the treacherous jungle that treatment really seems to be when you are new.
So why are we oldtimers still in need of this place? Because as horrible as treatment might seem to be at the time - you can put it into a box and move on but life continues onwards. Post treatment illness can be more devastating than the treatment itself. Who if not the people in here understand what that is like?
So forget all about the fact that we come in here to help - we do. But there is so much more.
I hope this might bring some understanding to the situation and we don't ever have to hear that we're not as important as people currently on treatment. We are.
Debby
Diane you have me confused. Your post is startling in light of the fact that yesterday you stated to NYGirl and me:
"I was speaking for all of us who are in the middle of tx NOW, and feeling the effects today... not remembering them from years ago. Yes, WE are the ones that need validating. I imagine you needed it when you were doing tx too. If you want to validate cancer patients, go to a cancer site. I bet you would find people complaining there too, because that is what a forum is for."
I know you have complained of brain fog, but your statement on this thread is completely at odds with your posts where you claim that the board and all respect and validation is reserved for those who are treating now.
You insist that this is a "Support Forum" but if you will carefully read the forum description you will see that it states this is a forum for discussion. In a discussion, when someone disagrees with you, it is not an invalidation of your feelings, it is a person exercising her god-given right to her opinion.
People are not just going to agree with your misstatements, even though you are on treatment. We aspire to accuracy here. It is important that we not let misinfromation go unchallenged. You came here for information - how would it be if people had given you wrong information and we all sat back and let it stand just to spare someone's feelings? Would that be alright with you?
If someone like your son or daughter comes on here to find out what is going on with their mom, do you really want them to read that this is like cancer chemo? Do you want your children worrying that you have a disease as serious and deadly as cancer? I know it sounds really dramatic and that you are feeling weak and sick, but really! Do you want that kind of fear instilled in your children? Or other people's children?
Please think about it - we're not here to have a pity party. We are here to discuss and to learn.
Trinity
"I was speaking for all of us who are in the middle of tx NOW, and feeling the effects today... not remembering them from years ago. Yes, WE are the ones that need validating. I imagine you needed it when you were doing tx too. If you want to validate cancer patients, go to a cancer site. I bet you would find people complaining there too, because that is what a forum is for."
I know you have complained of brain fog, but your statement on this thread is completely at odds with your posts where you claim that the board and all respect and validation is reserved for those who are treating now.
You insist that this is a "Support Forum" but if you will carefully read the forum description you will see that it states this is a forum for discussion. In a discussion, when someone disagrees with you, it is not an invalidation of your feelings, it is a person exercising her god-given right to her opinion.
People are not just going to agree with your misstatements, even though you are on treatment. We aspire to accuracy here. It is important that we not let misinfromation go unchallenged. You came here for information - how would it be if people had given you wrong information and we all sat back and let it stand just to spare someone's feelings? Would that be alright with you?
If someone like your son or daughter comes on here to find out what is going on with their mom, do you really want them to read that this is like cancer chemo? Do you want your children worrying that you have a disease as serious and deadly as cancer? I know it sounds really dramatic and that you are feeling weak and sick, but really! Do you want that kind of fear instilled in your children? Or other people's children?
Please think about it - we're not here to have a pity party. We are here to discuss and to learn.
Trinity
You're the best Deb; I simply wouldn't have managed tx without you and others showing me the way and giving me advice to pass onto my family, and strategies to go to my doctors with. I try to pay it forward in my daily life which could have been so very very different.
You maybe an old timer here ny-gal,but you are young at heart.Are you taking up book writing in your spare time?
I appreciate the medical info, advice & support from all those that have responded to me regardless as to how long they have been on MedHelp.I view everyone equally here. It takes a village.
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