member participation

13

Comments

  • foxhd
    foxhd Member Posts: 3,181 Member
    #42
    aamdsi said:

    Feel bad

    I took some tome "off" and felt bad not being on here.  I was busy for one (had Granddaughter to chase/snuggle for a weekend) and guess just tried to put it all out of my mind for awhile.

    But...couldn't.  This site offers refuge, answers, hope, a smile and a tear and occasionally a good laugh.

    So - for better or worse, I am back 8-)

    37 posts

    See. Most everyone can particpate and share their thoughts. Once you sign on you are part of the family and can speak up. Reminds me of "Hair" Something like, "long ones, tall ones, short ones,round ones , green ones, red ones , and spaghetti....All different.

    Sometimes I think people feel like they have to be invited. Everyone has something in common, with their own unique perspective. Damn cancer. It's also fun to interject some humor. Texas Wedge and Ron did more than anyone to teach, laugh, and live. Right up to their last days they remained active. How does it go? "Live, love, laugh." That is how they would want us to continue on.

    So here's a bad one......What did one casket say to the other casket ?                                                         "Is that you coughin?

  • nsb748
    nsb748 Member Posts: 89
    #43
    aamdsi said:

    Feel bad

    I took some tome "off" and felt bad not being on here.  I was busy for one (had Granddaughter to chase/snuggle for a weekend) and guess just tried to put it all out of my mind for awhile.

    But...couldn't.  This site offers refuge, answers, hope, a smile and a tear and occasionally a good laugh.

    So - for better or worse, I am back 8-)

    I browse the posts every day

    I browse the posts every day and they usually affect me in one of two ways...

    A.  I get freaked out thinking about mets, reoccurences, etc.

    B.  I feel better by reading about people like Fox, who threw RCC a solid beatdown. 

     

    I try to only respond to posts where I have some personal experience, (33 years old, male, Stage 1, grade 2, 2.2cm, open partial neph). 

    With that being said, I do feel an obligation to share my story with people who are in a similar situation.  The people on this site really helped to calm me down when I first was diagnosed, so I try to pay it forward.

     

     

  • todd121
    todd121 Member Posts: 1,448 Member
    #44
    Why I Don't Post More Than I Do

    Hi Fox,

    I understand your frustration and concern.

    I have thought about it before. I always think before I post. Texas used to jump on me (and I wish he was around to do it again) about posting when I "didn't know what I was talking about". One of my criteria is that I should know what I'm talking about. Sometimes I just don't feel like my knowledge is up-to-snuff and I definitely wouldn't want to lead anyone astray. Heck, sometimes I'm wrong even when I think I do know what I'm talking about!

    Personally, I find lots of "me too" posts to be a little frustrating and I find myself being hesitant to jump on when what I'm saying doesn't add any new information. Can you imagine if we all posted and each post was the same? That'd be frustrating as well. Although I do see your point that numbers can be a good thing in certain situations (like knowing others are there for us).

    I find that I don't have the time to keep up even with what's already being posted, so I get behind and can't catch up. Time in general is a problem for me, so I have to pick and choose.

    Even when I see someone that needs support, I feel inadequate about what to say that would be supportive/helpful. I err on the side of silence. I say a little prayer for them and decide not to put my sentiment in writing, leaving it to those that seem to do better at providing kind words of support. I find words just fail me much of the time.

    Sometimes because I don't keep up with everything, I don't feel that I know the person or situation enough to chime in (I guess I might even feel like an outside to what I've observed to a little group within our group, which may not even be true, but it's the way I feel, so I stay silent).

    Part of the reason I can't keep up, is because I find that when I'm here reading all the time and keeping up with my posts, my anxiety about my cancer returning goes through the roof. I have to go away for a few days. I'm sorry, but it's something I have to do to take care of myself. I wish I could be supportive without that. I'll consider it.

    Thanks for your concern for our community here. I appreciate your involvement.

    Best wishes,

    Todd

  • foxhd
    foxhd Member Posts: 3,181 Member
    #45
    Karen0074 said:

    Ha ha not dirty..

    ...I am British after all

    it was an emoji face blowing you a kiss!!

    That's exactly!

    what I was thinking! Thanks!

     

    My parents always said that the British didn't have a sense of humor. I LOVE British humor. Mrs. Buckett. Benny Hill, Monty Python.

     Kisses back at you!

  • foxhd
    foxhd Member Posts: 3,181 Member
    #46
    todd121 said:

    Why I Don't Post More Than I Do

    Hi Fox,

    I understand your frustration and concern.

    I have thought about it before. I always think before I post. Texas used to jump on me (and I wish he was around to do it again) about posting when I "didn't know what I was talking about". One of my criteria is that I should know what I'm talking about. Sometimes I just don't feel like my knowledge is up-to-snuff and I definitely wouldn't want to lead anyone astray. Heck, sometimes I'm wrong even when I think I do know what I'm talking about!

    Personally, I find lots of "me too" posts to be a little frustrating and I find myself being hesitant to jump on when what I'm saying doesn't add any new information. Can you imagine if we all posted and each post was the same? That'd be frustrating as well. Although I do see your point that numbers can be a good thing in certain situations (like knowing others are there for us).

    I find that I don't have the time to keep up even with what's already being posted, so I get behind and can't catch up. Time in general is a problem for me, so I have to pick and choose.

    Even when I see someone that needs support, I feel inadequate about what to say that would be supportive/helpful. I err on the side of silence. I say a little prayer for them and decide not to put my sentiment in writing, leaving it to those that seem to do better at providing kind words of support. I find words just fail me much of the time.

    Sometimes because I don't keep up with everything, I don't feel that I know the person or situation enough to chime in (I guess I might even feel like an outside to what I've observed to a little group within our group, which may not even be true, but it's the way I feel, so I stay silent).

    Part of the reason I can't keep up, is because I find that when I'm here reading all the time and keeping up with my posts, my anxiety about my cancer returning goes through the roof. I have to go away for a few days. I'm sorry, but it's something I have to do to take care of myself. I wish I could be supportive without that. I'll consider it.

    Thanks for your concern for our community here. I appreciate your involvement.

    Best wishes,

    Todd

    You have been here

    a long time Todd. I've always felt you have had plenty to add to conversations or conversations you started up. I know what you mean about Tex keeping a tight ship about being accurate in statements. I miss him for that too. I understand and follow the concepts of treating this disease. But like you, I haven't kept up with details like Nano does. For me that would be like being at work. I have enough to keep track of my own care. I want to act retired with the time I have left. I just kind of felt that this site needed a jump start.

  • angec
    angec Member Posts: 924 Member
    #47
    foxhd said:

    You have been here

    a long time Todd. I've always felt you have had plenty to add to conversations or conversations you started up. I know what you mean about Tex keeping a tight ship about being accurate in statements. I miss him for that too. I understand and follow the concepts of treating this disease. But like you, I haven't kept up with details like Nano does. For me that would be like being at work. I have enough to keep track of my own care. I want to act retired with the time I have left. I just kind of felt that this site needed a jump start.

    1999, that was a good year,

    1999, that was a good year, and also then number of posts Fox made!  Keep it going, Fox!  Great to see you and Nano offer up very beneficial information to the rest of us!  Nano, I appreciate all of the posts and articles on smart patients. Thanks for keeping that up, many are helped by your research and your encouragement. The same for you, Fox! 

  • Rea
    Rea Member Posts: 28
    #48
    I totally agree with you Fox

    I totally agree with you Fox and I am guilty of not contributing much to this forum. I appreciate you, Ron, djinnie and Neil Nano to name a few who has taken the time to share your thoughts and knowledge about this dreaded disease. I wish I can contribute more and this will be my goal now to learn more about this illness and share my thoughts more often than I should, to post not only when I have concern but also to offer a listening ear and words of encouragement to everyone on his forum. I am so blessed to be able to work 10 hours a day and take care of a 4 year month old baby girl. I want to continue like this and find time to be visible in CSN and SP. thanks for opening my eyes on this. 

    I hope you're dong alright and I pray that we all get well and win this battle. I was so sad seeing the bad news about Ron in SP. My posts have not gotten much comments but Ron has always shared What he can, it's just sad. 

    Thnaks everyone ffr or being there for me when no one seems to understand what I'm going through. 

     

    PS

    just to update, I'm carrying on 800mg of votrient now for a week (I was on 400mg for 14 days) not much SE which made me worry if I am taking the meds correctly. Will do liver function blood works next week as my enzyme went high while on 400mg but onco still decided to continue for 2 weeks. If all same, I need to switch to Sutent. 

     

    God old bless us all and I pray that we alone around for a much longer time. 

     

    Rea

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    #49
    Rea said:

    I totally agree with you Fox

    I totally agree with you Fox and I am guilty of not contributing much to this forum. I appreciate you, Ron, djinnie and Neil Nano to name a few who has taken the time to share your thoughts and knowledge about this dreaded disease. I wish I can contribute more and this will be my goal now to learn more about this illness and share my thoughts more often than I should, to post not only when I have concern but also to offer a listening ear and words of encouragement to everyone on his forum. I am so blessed to be able to work 10 hours a day and take care of a 4 year month old baby girl. I want to continue like this and find time to be visible in CSN and SP. thanks for opening my eyes on this. 

    I hope you're dong alright and I pray that we all get well and win this battle. I was so sad seeing the bad news about Ron in SP. My posts have not gotten much comments but Ron has always shared What he can, it's just sad. 

    Thnaks everyone ffr or being there for me when no one seems to understand what I'm going through. 

     

    PS

    just to update, I'm carrying on 800mg of votrient now for a week (I was on 400mg for 14 days) not much SE which made me worry if I am taking the meds correctly. Will do liver function blood works next week as my enzyme went high while on 400mg but onco still decided to continue for 2 weeks. If all same, I need to switch to Sutent. 

     

    God old bless us all and I pray that we alone around for a much longer time. 

     

    Rea

    I hear so many people here

    I hear so many people here stating that they have nothing to offer. I would like to argue that! Everyone has their strengths and gifts. Some are the educators, some are the compassionate, some are the comedians, some are the reliables. But we are all here for the same reason, aren't we. We all have a common denominator. And that is what binds us. I think Foxy started this topic to wake everyone up, remind them that they are all valued members - and that he just plain misses seeing some of his friends here.

    Hugs

    Jojo

     

     

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    #50
    A little bit of this and that

    I joined here january 2012.  The date is not reflected with my screen name, because the account got recreated.  

    I remember well the discussions going back and forth between you (nano) and our beloved Texas wedge.  I thought of it like mentally sparring.  I was amazed at the level of intelligence and the classy way you would both go about expressing yourselves, often disagreeing, and it seemed to me you were both enjoying yourselves!  I miss those conversations.  Texas wedge was a unique character that I miss so much.  Do you remember when he would constantly instruct people that they shouldn't start a new thread?  It still brings a smile to my face.  

    Todd. Those are really good insights into reasons for not posting.  I responded mostly with my opinion that people shouldn't feel obligated, but then I started thinking about my own reasons for not posting very much.  Here we go...

    I read a post and I think I have no more to offer than what has already been said.  It would be repetitive, redundant.  Some people here are phenomenol at offering ssupport, they express themselves well with the written word.   I don't think that is one of my gifts.  in the beginning of my joining here it took me a long time to feel caregivers were welcome.  I have gotten over that mostly.  The biggest reason I don't post is that I am so worn out and exhausted as a caregiver to my husband and my elderly mother.  Some days I have nothing left to give.  I spend every waking moment taking care of others.  Three days ago while at the hospital, I fell. Broke my leg, a couple ribs, had ulcerative colitis flare.  While I spent the day in ER, my mom passed away in another place in the hospital.  My husband is struggling to help me and he can't.  We both cried.  This is what I mean when I say I think people just do the best that they can do at any given moment.

    srashed.  I want to clarify to you that I didn't make those statements, nor did the same individual make them.  It's not how I think and no contradictions.  

    In the most loving and kindhearted way, Ron pm'ed me and said csn is the fun site, and smart patients is generally more serious patients and discussions.  Ron loved this site.  He called it "the fun place".  I'm glad I knew him here.  He clearly valued everyone here.  I will miss him, and it won't be the same.  

     

     

  • todd121
    todd121 Member Posts: 1,448 Member
    #51
    a_oaklee said:

    A little bit of this and that

    I joined here january 2012.  The date is not reflected with my screen name, because the account got recreated.  

    I remember well the discussions going back and forth between you (nano) and our beloved Texas wedge.  I thought of it like mentally sparring.  I was amazed at the level of intelligence and the classy way you would both go about expressing yourselves, often disagreeing, and it seemed to me you were both enjoying yourselves!  I miss those conversations.  Texas wedge was a unique character that I miss so much.  Do you remember when he would constantly instruct people that they shouldn't start a new thread?  It still brings a smile to my face.  

    Todd. Those are really good insights into reasons for not posting.  I responded mostly with my opinion that people shouldn't feel obligated, but then I started thinking about my own reasons for not posting very much.  Here we go...

    I read a post and I think I have no more to offer than what has already been said.  It would be repetitive, redundant.  Some people here are phenomenol at offering ssupport, they express themselves well with the written word.   I don't think that is one of my gifts.  in the beginning of my joining here it took me a long time to feel caregivers were welcome.  I have gotten over that mostly.  The biggest reason I don't post is that I am so worn out and exhausted as a caregiver to my husband and my elderly mother.  Some days I have nothing left to give.  I spend every waking moment taking care of others.  Three days ago while at the hospital, I fell. Broke my leg, a couple ribs, had ulcerative colitis flare.  While I spent the day in ER, my mom passed away in another place in the hospital.  My husband is struggling to help me and he can't.  We both cried.  This is what I mean when I say I think people just do the best that they can do at any given moment.

    srashed.  I want to clarify to you that I didn't make those statements, nor did the same individual make them.  It's not how I think and no contradictions.  

    In the most loving and kindhearted way, Ron pm'ed me and said csn is the fun site, and smart patients is generally more serious patients and discussions.  Ron loved this site.  He called it "the fun place".  I'm glad I knew him here.  He clearly valued everyone here.  I will miss him, and it won't be the same.  

     

     

    Thanks for your post

    I'm so sorry to hear about your accident. That sucks!! And when you add that to the other stuff...we need more adjectives (or adverbs or gerunds or whatever they are, it's been a long time since I took grammar) that go way beyond something sucking. That's just damn ridiculously awful.

    And here you are posting and helping out and offering your opinion and support.

    Wow! I'm impressed.

    Thank you. Thank you.

    Todd

  • Limelife50
    Limelife50 Member Posts: 476
    #52
    HaHa

    I thought i pissed some people off hey but if you want me here i am.

  • resistance2
    resistance2 Member Posts: 16 Member
    #53
    Fox,
    I check this site

    Fox,

    I check this site everyday, i read all the posts and follow them, my Dad has RCC stage 4, I am in the forum for him, he has a postive vibe towards life and enjoys it to the fullest like you and most members here, good food, great company, crazy hobbies, and most importantly faith in god keep people going i think

  • Srashedb
    Srashedb Member Posts: 482 Member
    #54
    a_oaklee said:

    A little bit of this and that

    I joined here january 2012.  The date is not reflected with my screen name, because the account got recreated.  

    I remember well the discussions going back and forth between you (nano) and our beloved Texas wedge.  I thought of it like mentally sparring.  I was amazed at the level of intelligence and the classy way you would both go about expressing yourselves, often disagreeing, and it seemed to me you were both enjoying yourselves!  I miss those conversations.  Texas wedge was a unique character that I miss so much.  Do you remember when he would constantly instruct people that they shouldn't start a new thread?  It still brings a smile to my face.  

    Todd. Those are really good insights into reasons for not posting.  I responded mostly with my opinion that people shouldn't feel obligated, but then I started thinking about my own reasons for not posting very much.  Here we go...

    I read a post and I think I have no more to offer than what has already been said.  It would be repetitive, redundant.  Some people here are phenomenol at offering ssupport, they express themselves well with the written word.   I don't think that is one of my gifts.  in the beginning of my joining here it took me a long time to feel caregivers were welcome.  I have gotten over that mostly.  The biggest reason I don't post is that I am so worn out and exhausted as a caregiver to my husband and my elderly mother.  Some days I have nothing left to give.  I spend every waking moment taking care of others.  Three days ago while at the hospital, I fell. Broke my leg, a couple ribs, had ulcerative colitis flare.  While I spent the day in ER, my mom passed away in another place in the hospital.  My husband is struggling to help me and he can't.  We both cried.  This is what I mean when I say I think people just do the best that they can do at any given moment.

    srashed.  I want to clarify to you that I didn't make those statements, nor did the same individual make them.  It's not how I think and no contradictions.  

    In the most loving and kindhearted way, Ron pm'ed me and said csn is the fun site, and smart patients is generally more serious patients and discussions.  Ron loved this site.  He called it "the fun place".  I'm glad I knew him here.  He clearly valued everyone here.  I will miss him, and it won't be the same.  

     

     

    Oh, my

    I am so sorry at the loss of your mom and not being there because of your health issues.

    this, in addition, to caring for your husband.

    I understood that you were referring to a post from someone freaked out by stage 3 or 4 and that the fun site comment was made by someone else.

    That is what I disagreed with and still do. I am on Smart Patients and there is more medical information shared although also quite a bit of support too.

    this site has much to offer in experiences and for me, the medical information is not always the focus.

    As I mentione, when I was going through breast cancer 22 years ago, support sites were so helpful. As an example, I was on a particular medication and pretty much knew what it did as well as the side-effects but it was only on a support group site that I found others who had their hair thinning. This was not chemo and nowhere had that been discussed. I thought it was just me.

    i relate to your initial reluctance to share because you are not the patient; I still feel that sometimes 

    Sarah

  • foxhd
    foxhd Member Posts: 3,181 Member
    #55
    a_oaklee said:

    A little bit of this and that

    I joined here january 2012.  The date is not reflected with my screen name, because the account got recreated.  

    I remember well the discussions going back and forth between you (nano) and our beloved Texas wedge.  I thought of it like mentally sparring.  I was amazed at the level of intelligence and the classy way you would both go about expressing yourselves, often disagreeing, and it seemed to me you were both enjoying yourselves!  I miss those conversations.  Texas wedge was a unique character that I miss so much.  Do you remember when he would constantly instruct people that they shouldn't start a new thread?  It still brings a smile to my face.  

    Todd. Those are really good insights into reasons for not posting.  I responded mostly with my opinion that people shouldn't feel obligated, but then I started thinking about my own reasons for not posting very much.  Here we go...

    I read a post and I think I have no more to offer than what has already been said.  It would be repetitive, redundant.  Some people here are phenomenol at offering ssupport, they express themselves well with the written word.   I don't think that is one of my gifts.  in the beginning of my joining here it took me a long time to feel caregivers were welcome.  I have gotten over that mostly.  The biggest reason I don't post is that I am so worn out and exhausted as a caregiver to my husband and my elderly mother.  Some days I have nothing left to give.  I spend every waking moment taking care of others.  Three days ago while at the hospital, I fell. Broke my leg, a couple ribs, had ulcerative colitis flare.  While I spent the day in ER, my mom passed away in another place in the hospital.  My husband is struggling to help me and he can't.  We both cried.  This is what I mean when I say I think people just do the best that they can do at any given moment.

    srashed.  I want to clarify to you that I didn't make those statements, nor did the same individual make them.  It's not how I think and no contradictions.  

    In the most loving and kindhearted way, Ron pm'ed me and said csn is the fun site, and smart patients is generally more serious patients and discussions.  Ron loved this site.  He called it "the fun place".  I'm glad I knew him here.  He clearly valued everyone here.  I will miss him, and it won't be the same.  

     

     

    a oaklee, it sounds

    to me that you have a very unique perspective in an area that isn't discussed enough. Not everything needs to be scientific or medical oriented. Caregivers need a lot of love too. .....So sorry about your injuries and your mom. Sheesh. Just how big is that plate of yours. It sounds to me that your issues are greater than many who have had nephrectomies.

    I completely agree with Ron's assessment that this is the more "fun" and casual place. And smart patients is more clinically oriented. That is precisely why I post here and don't go to smart patients. I have mentioned several times that I have accepted my fate and desire to ride this thing out regardless of the outcome. Again, I am on top of my care. I am exceeding expectations. The details of cancer are more new to me, but medicine and health care are not. I am comfortable leaving the science of my care to people who are far smarter than me. Especially when it is their passion. I am active in the decisions relating to my care. I am not in the dark. Except for bizarre things like my current pain and weakness. I also have at my desire, pharmacists, physicians, therapists, nurses, and specialists in many areas. Live on my friends.

     

    somehow this ended up way out of order..??

  • foxhd
    foxhd Member Posts: 3,181 Member
    #56
    Limelife50 said:

    HaHa

    I thought i pissed some people off hey but if you want me here i am.

    nice 'Glide!

    "Doctor, What should I do?"

    "Take a hundred mile ride. And call me in the morning."

  • Suekub
    Suekub Member Posts: 137
    #57
    resistance2 said:

    Fox,
    I check this site

    Fox,

    I check this site everyday, i read all the posts and follow them, my Dad has RCC stage 4, I am in the forum for him, he has a postive vibe towards life and enjoys it to the fullest like you and most members here, good food, great company, crazy hobbies, and most importantly faith in god keep people going i think

    Interesting topic!

    I visit here a lot and post only when I have had something to report or seek advice or just plain vent - selfish? Maybe. I agree that not all of us are able to inject positivity and I am one of those! it seems I am yet to have any good news at scan time and I am useless at "hearts and flowers" so feel that I do not have much to contribute that would help anybody. Everything I would like to say has already been said, and usually so much better than I ever could so just add nothing. I get insanely jealous of anyone who is able to report good scan results (there I have said it lol) and quite frankly, am not a good cheerleader. I do, however, wish nothing but the best to everyone here.

    I guess the main reason I come here is to educate myself and "talk" to people who are in a similar situation when.

    Probably should not have joined this conversation today, as yet again I have had a less than good scan and have been removed from my latest drug trial and referred back to my original oncologist.

    Cancer sucks big time!

    Sue

     

  • foxhd
    foxhd Member Posts: 3,181 Member
    #58
    Suekub said:

    Interesting topic!

    I visit here a lot and post only when I have had something to report or seek advice or just plain vent - selfish? Maybe. I agree that not all of us are able to inject positivity and I am one of those! it seems I am yet to have any good news at scan time and I am useless at "hearts and flowers" so feel that I do not have much to contribute that would help anybody. Everything I would like to say has already been said, and usually so much better than I ever could so just add nothing. I get insanely jealous of anyone who is able to report good scan results (there I have said it lol) and quite frankly, am not a good cheerleader. I do, however, wish nothing but the best to everyone here.

    I guess the main reason I come here is to educate myself and "talk" to people who are in a similar situation when.

    Probably should not have joined this conversation today, as yet again I have had a less than good scan and have been removed from my latest drug trial and referred back to my original oncologist.

    Cancer sucks big time!

    Sue

     

    I'll bet

    if you vented about not being a good cheerleader, or about jealousy, I'll bet you would get a hot topic going.

  • rainsandpours
    rainsandpours Member Posts: 136
    #59
    Skagway Jack said:

    Valid criticism

    Fox,  Your point is valid. I have been less participatory than usual myself.  I could move on altogether, but for the fact that when I was given my second chance by my surgeon I wanted to be able to pay it forward in anyway I can which might include helping someone on this forum.  We all go through this in our own unique ways, but the experiences are similar.  Ron contributed a great deal here and his shoes will be hard to fill.  Some of the anguish felt by the folks here will take some time to heal. 

             Some of us stage 1 folks feel unequipped to add to some of the threads.  Providing some humour or positive stories would be step in the right direction.  I for one, will endeavor to be a bigger contributor going forward. 

    Jack

     

     

    I'm one to fade away

    I'm one to fade away occasionally, but that's due to being involved in so many medical issues, the least of which is my RCC.  I say I 'had" kidney cancer.  Once my incision healed, I filed that life event away.  Not that I don't deal with cancer on a daily basis.  I hope my postings help someone in some way.  I know I can add perspective of multi/comorbid diagnoses.  After all, once you've had 1 cancer, your chance of another is higher.  I can help our friends here should that ever happen. 

    I don't like starting new topics much though.  Much more comfortable replying to existing ones.  Been that way since I joined almost 2 years ago.  I learned so much from everyone, and try to pop on when I can to keep updated, even if I don't have time to post.  I've been spending a lot of time on BCO.org learning about my new cancer and treatment options.

     

    Anyway, the phenomena of the one post wonder happens everywhere.  What irks me is when they post a new thread then never return to update. Arg

  • foxhd
    foxhd Member Posts: 3,181 Member
    #60
    rainsandpours said:

    I'm one to fade away

    I'm one to fade away occasionally, but that's due to being involved in so many medical issues, the least of which is my RCC.  I say I 'had" kidney cancer.  Once my incision healed, I filed that life event away.  Not that I don't deal with cancer on a daily basis.  I hope my postings help someone in some way.  I know I can add perspective of multi/comorbid diagnoses.  After all, once you've had 1 cancer, your chance of another is higher.  I can help our friends here should that ever happen. 

    I don't like starting new topics much though.  Much more comfortable replying to existing ones.  Been that way since I joined almost 2 years ago.  I learned so much from everyone, and try to pop on when I can to keep updated, even if I don't have time to post.  I've been spending a lot of time on BCO.org learning about my new cancer and treatment options.

     

    Anyway, the phenomena of the one post wonder happens everywhere.  What irks me is when they post a new thread then never return to update. Arg

    one hit wonders

    are one thing. There is a name for visiting boards and not posting. Lurkers. Right?  That is thought of with a negative connoctation...(did I say that right?) It is almost like being a peeping tom. Or evesdropping.

  • angec
    angec Member Posts: 924 Member
    #61
    Suekub said:

    Interesting topic!

    I visit here a lot and post only when I have had something to report or seek advice or just plain vent - selfish? Maybe. I agree that not all of us are able to inject positivity and I am one of those! it seems I am yet to have any good news at scan time and I am useless at "hearts and flowers" so feel that I do not have much to contribute that would help anybody. Everything I would like to say has already been said, and usually so much better than I ever could so just add nothing. I get insanely jealous of anyone who is able to report good scan results (there I have said it lol) and quite frankly, am not a good cheerleader. I do, however, wish nothing but the best to everyone here.

    I guess the main reason I come here is to educate myself and "talk" to people who are in a similar situation when.

    Probably should not have joined this conversation today, as yet again I have had a less than good scan and have been removed from my latest drug trial and referred back to my original oncologist.

    Cancer sucks big time!

    Sue

     

    Sue, sorry to hear that.

    Sue, sorry to hear that.  Yes, it does suck, big time! What have you tried so far? Is it time to dig deeper and see if you need a different type of drug? For instant there are the tki's and the mtors.  Neil, help me out please.. lol.  Maybe they need to combine?  I forgot what you did recently.  Did you already update on SP?  Hoping and praying something can go your way soon. Hugs, don't give up.... something will work.  Was il-2 an option?

Discussion Boards