45 replies to this topic

[Furr]

I think that sometimes people on this forum try to be as disgusting as possible. I am thinking of a short, bald man in particular. I follow this forum to learn what problems and adversities that other people with CML face. Problems associated with our cancer and treatment. Not about someone's crotch rot or nasty toenails. If something is genuinely a problem due to CML related causes, that is one thing. To post merely for shock value is unacceptable.

[mikefromillinois]

My two cents.

 

I have visited this board almost daily for about four years - when it was the "old board" and now that it is the new and improved board.  I have found it to be a great source of information and encouragement.

 

My gripe is that nowadays almost all threads are peppered with idle chatter, inside jokes, and so forth that tend to hijack the thread.  Comraderie is one thing, but I'm sure there are many people here who find it tedious to have to scroll through a lot of noise to get to the parts of a thread that are important to them.

 

Years back I suggested an area of the forum be dedicated to "Off Topic" stuff.  Most forums have such areas.  In lieu of that, maybe it would make for a more meaningful forum if fellow members were more sensitive to the concept of not hijacking threads with idle chit chat.

 

I not sayin', I'm just sayin'.

 

Pax

[pammartin]

Just a thought, but laughing is always better than crying, and laughter often reduces a good case of nerves.

We share things on here that we might not tell our best friends, because no one really understands except those who are living through it also. It is easier to tell a group of fairly unknown people we have a gross symptom, CML/TKI related or not. We do not have to look these people in the eye and might not ever meet.

This group is the busiest on the LLS forum I believe and although there is laughter and jokes, everyone rallies around a new member, a question, test result, or symptom.

There are many, myself included that enjoy the banter because I know I can always find a reason to smile or on occasion a belly laugh.

I am sorry some of the topics do not interest or offend. I do not usually read the ones that concern a TKI I have not taken because I can add nothing to the conversation.

Threads get hijacked and we usually get back around to the subject, often with a sincere apology for the hijacking but many times the original poster joins in on the hijacking.

We all know this is a serious disease and treat it with respect. Sometimes, life's little hiccups like toe fungus or jock itch are the last straw in a host of side effects actually caused by a TKI or CML. Venting is a healthy form of expression.

I hope you both continue to read threads and gain insight through the information that is shared by all.

Take care,
Pam

[hannibellemo]

Thank you, Pam, you took the words right out of my mouth and said them much more eloquently than I could have. 

[dede5]

I don't get much out of the numbers, or TKI's other than the one I'm using, so I just skip over those. One of the things I picked up on almost immediately was the comraderie of the members of this forum, and how they embrace newcomers. Our disease is a very serious subject, so some of us have to find outlets. I worked in a hospital ER for several years, and this is very similar. Nobody means to be disrespectful, and we all know what it is, but you have to find ways to deal (i.e. the old tv series MASH).  We probably all skip over things that don't apply to us, but I would've probably moved on a long time ago if I hadn't found the amusement that comes with it. I thoroughly agree with the old saying, "You haven't lost it all til you've lost your sense of humor". 

[Trey]

Consider the two inputs and see what needs to improve while not eliminating what makes this place work well.  Not so hard to do.  Balance is all that was requested.  Balance is good.

[pammartin]

I thought the site had a good balance, which is why it works so well.  Have to think on that one.

[carrie]

Just a thought, but laughing is always better than crying, and laughter often reduces a good case of nerves.

We share things on here that we might not tell our best friends, because no one really understands except those who are living through it also. It is easier to tell a group of fairly unknown people we have a gross symptom, CML/TKI related or not. We do not have to look these people in the eye and might not ever meet.

This group is the busiest on the LLS forum I believe and although there is laughter and jokes, everyone rallies around a new member, a question, test result, or symptom.

There are many, myself included that enjoy the banter because I know I can always find a reason to smile or on occasion a belly laugh.

I am sorry some of the topics do not interest or offend. I do not usually read the ones that concern a TKI I have not taken because I can add nothing to the conversation.

Threads get hijacked and we usually get back around to the subject, often with a sincere apology for the hijacking but many times the original poster joins in on the hijacking.

We all know this is a serious disease and treat it with respect. Sometimes, life's little hiccups like toe fungus or jock itch are the last straw in a host of side effects actually caused by a TKI or CML. Venting is a healthy form of expression.

I hope you both continue to read threads and gain insight through the information that is shared by all.

Take care,
Pam

 

Well said Pam. I for one do not have problems with humorous jokes. I enjoy the laughter that those comments produce. Life is too short to be so serious. There are many many informative posts. If something is offensive then don't spend time reading it. Balance in life is great. I need the humor as well as the serious information. Freedom of speech is so important.

[Kittywatkins]

Well...I for one was relieved when there was a topic of the most disgusting gas. I thought I was the only one and believe or not had anxiety because I couldn't sleep trying to hold my gas in. I thought I had stomach cancer but when I read other people post here of the same due to the tki... I was blown away by the responses. I was so thankful that we could talk about this issue because I'm too embarrassed to talk to my husband about it. But I also get that there has to be a balance and sometimes we get off topic. I hope the short bald guy doesn't get too offended. Lol. Sorry you feel this way

[pammartin]

The post that was referred to has been moved to the 'Let's Just Talk' forum.  If you have not checked this forum out, it is a place to talk about things not necessarily related to our diseases.

 

Perhaps this is the balance Trey was speaking of.

[mamawarrior]

Curious as to why it is not considered related to the disease?

People with blood cancers are more susceptible to infections because of the blood cancer, because of the treatment, whether it be bacterial, viral or fungal. I realize the general healthy population can end up with fungal infections but am i wrong to think that a person with CML undergoing treatment may be more susceptible than the general public??

My son did not have cml, he had aml and a transplant, but when i saw the thread i opened it up because unfortunately my son has dealt with some serious infections in places people do not like to discuss. But because it is discussed whether with humor or not, it can help some physically or psychologically.

[Dom]

The post in question was clearly marked "I think I have jock itch" so it was easy enough to avoid. I skip over most of the threads since they don't concern me. I didn't skip that one, I actually responded because I had a cure in mind.

And what mamawarrior said is very true.

[JPD]

First, sorry for not being serious and mature enough for some members.  I did not mean to cause offense.

 

Second, I think most of the threads are clearly enough labeled, but occasionaly threads, as conversations often do, go off on tangents.  In the case of the former, DON'T CLICK ON THE THREAD.  In the case of the later, it usually comes back around to the topic at hand.  If it doesn't that is most likely because it's burned out - the question has been answered, the subject discussed.

 

I, for one, did not think common ailments (as "disgusting" as they might be) to be off topic here.  Its all related in so far as we are ALL dealing with CML & sometimes its the other little (or big) ailments that also plague us that causes distress.  Nothing I have seen mentioned that could be deemed disgusting was anything but true factual health issues.  And thats the human body, not something I made up for shock value (believe me, you don't want my mind delving into things to things of shock value).

 

Lastly, it's gallows humor around here for many of us.  We have an incurable form of cancer.  That sucks.  We have to take toxic pills that do god-knows-what to our bodies merely to stay alive.  We all hope and pray that we stay free from mutations and all hold our breath with every blood test.  It sucks.  It sucks bad. 

[pammartin]

JPD, please do not apologize, you were at a point where you had experienced one to many issues and needed to vent.  We have all been there.  Once I stomped around our barn about 30 times before screaming to my husband at the top of my lungs, 'Not only do I have to have a rare form of leukemia, because I cannot ever do anything half-assed I have to add a full blown case of depression on top just for fun.'  My husband laughed.  He caught himself, but he laughed because I was stomping in mud, screaming like a fishwife, and what I said was funny.  I understand a few members expressed the post was inappropriate but there are also members who experienced similar symptoms and offered potential solutions.  As Mamawarrior  said, we are not sure what all is associated with the disease.

 

I often skim over posts that I either know little about or ask questions about a TKI I have not taken.  I do hope you are finding relief to your latest issue, we deal with so many side effects when one hits us that does not have anything to do with the CML or TKI it is the one that tests our tolerance in general and sometimes our sanity. 

 

I won't address it here, but I am going to post on your original in the Let's Just Talk area. 

 

It's all good.  Take care

[alexamay09]

I've yet to be offended by anything I've read here. I love the banter and cameraderie. It gives users more of a 'personality'.

Also, I like to think that I can share things here that I can't share anywhere else.  Some things are really embarrassing to experience, let alone to write about/share, and if one way to do that is to use humour then that's just fine with me.

 

Alex

 

[pammartin]

If anyone wants to follow the thread in question, it has been moved to the 'Let's Just Talk' forum.

 

There are many who hang out there and discuss many subjects.  check it out if you have the time or inclination. 

[Kittywatkins]

How do you go into the lets talk forum???

[pammartin]

When you go to the Discussion Board page and then scroll down past the CML board to the bottom of all the choices.  The 'Let's Just Talk' forum is at the bottom of the page.  Once you get to that site you have two choices, Tell Your Story or Let's Just Talk.

 

I cannot seem to add a link to the page, let me know if you need help finding it. 

 

It is a great place, I hang out there a lot.  We are all still here for the same reason but in that forum we talk about politics to weather and beyond. 

[Gail's]

Warning if you want to skip :THIS POST IS OFF CML TOPIC. Just wanted to share that while in school, the local taco place let students eat tacos for 50 cents each. So my group would go eat tacos and study. One day a fellow student said I wonder what blood in stool would make it smell like? I looked up in time to see a young mom a few tables over stop mid bite with a horrified look on her face. Still laugh and cringe when I think of that. Didn't bother our taco eating at all. Crunch, crunch.
My point is, it's all about saying gross things in appropriate places. If not here, then on let's talk board but then may not get cml folks responding. Maybe we could put a couple of *** at start of off topic posts to warn more serious folks.

[pammartin]

Gail, we are having chili for dinner, I had a 5 minute almost roll on the floor laugh over your post.  I might try your classmate's question on my son and husband.  My husband is a closet germ-a-phobe.  <insert evil grin>

 

After thinking about it and Trey's comment about balance, I think all is as it should be. As long as everyone knows where the other thread is if they want to follow. 

 

I love the Let's Just Talk forum.