To all, old and new

[Cowgirl918]

This forum has been a long been a life saver for me. Nik is one of my preferred members. This is not because of any "clique" but because she answered me. She is open and honest. I hope we all stay that way. Nothing worse than a "church" that kicks out its members.
Love you Nik, and many others here and gone.
Cowgirl wisdom: what happens at the barn stays at the barn. Take Care y'all! Happy New Year!

[Regan]

My DH has been out of pain since this past August.

So many we have lost since I found this wonderful forum. I think of them often even though I'm trying to find my way back to "life?"

This board helped me save my precious DH additional misery because of others who had answers for his issues and was kind enough to share. Also, the search feature was unbelievably helpful.

I did and do think of this forum as a family...and families share, love, help, laugh, cry and get aggravated...... To me...its just that simple...we are family

[Green Tea]

Let me wish you HAPPY NEW year Maggie. Hope it's a good one.
Anyone know how to add a photo??

O/T:

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=19001&p=144126#p144126

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=18988&p=143661#p143661

[stu]

Oh thanks for the info. I will give it a try.
Stu

[michelle c]

I love this forum. It has helped me so much, more than words can say. I came here to find support, understanding and knowledge when I was first diagnosed. I didn't expect to find friends but I wanted to connect with others going through the same experiences. I have found that most people are only too willing to share and help others. I will help others where and when I can and I am more than happy to share my experiences and knowledge. I don't expect anything in return. I have connected with many and share PMs and emails. I have been here 7 years and have seen people come and go. People move on and sadly many have passed away.

You have put this forum down before and have gotten angry on occasions. I'm sorry that you feel this way. It does seem that you expect more from this forum than what you are getting. People here have cancer, and their main purpose for visiting this board is to receive support and knowledge, not to necessarily make friends, or joke. There are other forums for this or even Facebook. Of course, the connections we make are special and we generally care very much about each other. I appreciate honesty but being rude or impolite to others is unnecessary. I have never experienced it personally but I have seen others here targeted and it is upsetting and shocking. Thankfully, it has only been once or twice. You have threatened to leave many times and if this forum does not suit your needs or personality then it's best to find one that does. I have been on a few and this one suits me the best. I have no complaints at all about this one, I have only praise and I'm truly grateful and appreciative of it and everyone here. Best wishes to all.

[Sophy]

Michelle C - very well said and I agree with you - this is a forum and not a place to rant. We come here to exchange knowledge and give/receive support. Those who turn every remark or post into being about them are in need of specialist psychiatric help which we are not able to give.

A few years ago there was an agreement that anyone who threatened to leave would be automatically banned from the site. It worked then but unfortunately this doesn't seem to have been carried through to current times.

Wishing you all the best
Sophy

[GreenLakeGirl]

Those who forget history (or choose not to search for it) are condemned to repeat it. This is a natural ebb and flow of a discussion list. New members come and hopefully find what they are looking for. Experienced ones found it and hopefully stay to help the new ones. Many move on when their life with cancer changes. Old members stay if their health allows it but may move on. You get to choose what your experience is.

This is not the first time for someone to not find what they want from the board.
2013: Love this forum but...... (Grace): viewtopic.php?f=1&t=43109&p=305026
2012: An open message to no one in particular, AKA Bev, please stay (scottyg): viewtopic.php?f=1&t=36463&p=260051
2012: So done with this club! (Grace): viewtopic.php?f=1&t=34166

Some find it here, and not elsewhere:
2011: CSN Forum, AKA why Colon Talk is better: viewtopic.php?f=1&t=31606&p=204348

[Nik Colon]

Yes, I'm angry, sad, scared, you name it. I messed up, I said something mean to someone which I tried to apologize for, etc. Btw, the leave or go was a poem about staying in my state or doing a trial in another state, also about life and death. The last time I left for a few months was over a yr ago, but I can't live that down I guess. I obviously see I'm bad at words many times and many times misunderstood. That is my fault. I am sorry. I don't know how to fix it. I try my best to be kind, helpful, welcoming, etc. I'm human and I make mistakes, so I'm sorry for that.

Anyone who I have hurt, I apologize.

Again, I said I personally need to leave for a bit to collect my thoughts. I am torn at the moment between treatment, trials, money, family, time, etc. So I'm not in my right mind. Again, I apologize for anyone I have hurt.

Best wishes to you all.

[Maggie Nell]

You're only persecuting yourself, Nikki. There's nothing to fix. Everywhere you go, there will be
people who will misunderstand whatever is said to them. Will keep you in the Gerbil Wheel of Guilt:
apologizing for breathing, apologizing for colouring outside of the lines, apologizing for foot-in-mouth-disease....

You are not bad at words; there are folks who have selective hearing. There are peeps who don't get you
and never will. You can't please everyone and being a Purple Polka-dot People Pleaser is a royal road to
crazy with a capital "CRAARGGHH".

I will offer you my opinion, which used to earn me $200 per 50 minutes (and, no, I wasn't a 1-800 psychic).

Keep your family unit together and relocate. I have read that you had a non-negotiable when you met your
husband, that you were never going to leave Minnesota. Circumstances alter things - that was pre-diagnosis.

Go where the treatment is, that optimizes your life-span, and take hubby and daughter with you.

Hit the road.

[MissMolly]

I will offer you my opinion, which used to earn me $200 per 50 minutes (and, no, I wasn't a 1-800 psychic).

Keep your family unit together and relocate

This suggestion might be ease in theory but more difficult in actuality.

The medical insurance market in the United States is fragmented and not equitable.

Many insurance plans are not applicable/or do not transfer across state lines.

If Nik is covered by her husband's employer-provided health insurance, he would need to remain employed by the company in order to keep health insurance benefits active. Moving to a new state and keeping his current job or finding new employment may not be feasible for Nik's husband.

If Nik is covered by health insurance provided through the marketplace, the policy will likely have strict local provider limitations. Out-of-network care most often comes at a steep price that is out of range of an average family - a $15,000 deductible for out-of-network care with a 50% co-pay on all itemized expenses is not unheard of.

If Nik is covered by SSDI and Medicare, she still likely has a 20% co-insurance payment. People who are under 65 years of age are hard-pressed to find a Medicare supplemental policy to cover the 20% not paid by Medicare. Few policies exist and those that do have monthly premiums in excess of $1,000 a month.

If Nik is covered by MediCaid, her state of Minnesota would likely her guardian provider. She may not be able to get care outside of Minnesota is she has state-based MediCaid. States receive a block grant from the federal government to provide MediCade services to all need-based individuals.

The health care system in the United States is complex and complicated . . . and more so if you have a serious, life threatening illness. Not all treatment options are available to everyone on an equal basis, and this limitation applies not only to cancer but to almost all serious illnesses and conditions.
- Karen -

[dianetavegia]

This is a cancer chat board/forum so put your big boy/girl pants on.
If you want sugar coating, head down the cereal aisle.

Well said!

Much of the time, the truth hurts, but if we don't share the truth then are we not harming the patient? Don't ask me about side effects of FOLFOX and when I tell you it's even worse 7 1/2 years after completing chemo, get mad at me for being truthful! Nothing to do with the last portion of this thread, btw.... General remark about people getting upset when you answer truthfully. I got called a narcissistic personality when I told someone a term to use to search for their met location.

[Maggie Nell]

I will offer you my opinion, which used to earn me $200 per 50 minutes (and, no, I wasn't a 1-800 psychic).

Keep your family unit together and relocate

This suggestion might be ease in theory but more difficult in actuality.

The medical insurance market in the United States is fragmented and not equitable.

Many insurance plans are not applicable/or do not transfer across state lines.

The health care system in the United States is complex and complicated . . . and more so if you have a serious, life threatening illness. Not all treatment options are available to everyone on an equal basis, and this limitation applies not only to cancer but to almost all serious illnesses and conditions.
- Karen -

Indeed, Karen, there are many barriers. What a futile picture you paint.

[michelle c]

Maggie Nell,

It is the truth though, it is not so easy to just relocate your family. There is so much to consider and health care/insurance is a big one besides everything else.