Hi. I’m Kate. Turn ons include IV drips, PETscans, and organic fig newtons. Turn offs include whining, hospital gowns, and artificial sugar.
Let’s see how much life I can squeeze in between work, chemo, sleep, and scans.
Online Crack
Vices come in all shapes and sizes. Mine? Online cancer support groups. They promise you warmth, comfort, and hope. They can be found listed on trusted sites and are often hosted by well-known organizations. But beware: they are online crack. I learned early on that I needed to steer clear of these message boards. The information offered on the sites is often unsubstantiated and sometimes just down-right wrong.
I haven’t visited a message board in months…until last night. Hello binge!
An hour later, I’ve overdosed on the desperate pleas for hope, sad messages of lost loved ones, and rude comments about why some people deserve pc. I crash incredibly hard and suffer through the rest of the night and into the early morning. I spent today feeling completely strung out, exhausted, a walking zombie.
Time to go cold turkey again. Is there a support group for support group junkies?
The problem is that I would love to share my energy and optimism with the support groups, but need to figure out a way to do it without becoming overwhelmed by the negativity. I need to hire an offensive coordinator to come up with a game plan. A way for me to quickly sneak in, leave my little nuggets of hope, and get out before I’m lured into reading the posts. Maybe I need to come up with a formal job description and post an ad on Monster.com.
Until the position is filled, I’ll try to ignore the siren song of the message boards. I acknowledge that online cancer support groups are detrimental to my emotional health, but, unfortunately, there isn’t a patch to help me kick the habit.
Hi Kate,
First, congratulations on your walk! You are quite an inspiration for me. Unlike you, however, I can’t get on these websites! I get so scared and discouraged by the comments. That’s why I find some safety in your website because it isn’t scary. That’s also why I keep my own website positive so it’s safe for others with pc to visit and find some hope and encourgement. I depend on others to fish around the web for information for me. Too scary…way too scary for me.
You are in my prayers, Kate!
Hi Kate,
I saw your listing on Leroy Siever’s blog and decided to take a look. Your writing is superb and I enjoyed your podcast, too. Your ‘Online Crack’ is just what I needed to read today. My hubby was diagnosed with multiple myeloma 5/06 and spent 6 of the next 8 months in hospitals. I found a message board for mm and one for caregivers and immersed myself in them. What little time I had at home was spent in front of the computer. It helped me at first because I could ask questions and share my fears with these unknown people … it was safe … but I became addicted to it. Now that my husband is in remission I feel I have to respond to every person who is hurting and try to make them feel better, to help them see some hope in their situation. I spend hours on the computer and less time doing things I should. My home PC was infected with a trojan virus this Sunday and having no access to these lists bothered me more than it should have. I have never been one to do personal tasks while on the job, but I spent more time than I should have reading and responding to the message boards yesterday from my work pc. I felt guilty about it … but returned to it today. Thank God I read Leroy’s blog with your site listed. Reading your blog today provided me with the answer that I need. No more message boards. Cold turkey it will be! Thank you.
Hubby was also diagnosed with PC in 2000, but when opened up for a Whipple the tumor was found to be benign. We have been very blessed indeed. I will find another way to ‘pay it forward’ rather than taking on the message boards.
I’ll keep you in my prayers, Kate.
Hi Kate,
My husband was diagnosed with pc in May while being tested for another condition and was very lucky to have found it early enough to have surgery. He is now undergoing treatments. I had been visiting message boards for information and inspiration, but found I had to stop also. However, I do read your blogs and want you to know that your writing is beautiful and you are so inspiring to me. You give hope and optimism to me and I’m sure to many others also. Thank you.
I definitely understand. I was a caregiver a year and a half ago, and I got hooked on the JHU groups — and finally had to go cold turkey to disentangle myself. I still read sometimes, and occasionally post - but I’ve lost that addiction feeling.
Someone on the JHU list was suggesting a separate list for *patients* - saying that this might be good for everyone… caregivers sometimes hold back out of concern for patients reading the group, and patients would not be, as you note above, so overwhelmed with the postings from the caregivers. This suggestion created a tsunami of discussion. One poster - Michael from PA, I think - mentioned that another group has done this - but it requires moderation, since only postings from group members (who are all identified as patients) will be published. The current JHU forums could not support that - JHU uses pretty primitive forum software.
We have not met, but I continue to root for you from afar.
Kate - If you want to, you could start a Delphi Forum, where you can set the tone for discussion, perhaps have positive and negative folders, and you and/or others can act as moderators.
Lovely pictures in purple, woman!
I’ve missed walking this past week since the fatigue of radiotherapy makes even thinking about walking tiring.. Hopefully that longing coupled with your blog post will get me out this weekend. *crosses fingers*
…did my electronic community addiction in the early nineties, but I remember well the daze and nights of that particular stupor. I’ve remained a member of a local electronic community (now 18 years old) where I login a few hours a week to stay current. A five acre oak and hickory woodland is my new addiction. *smiles*
So, when I was diagnosed in March of this year with lung cancer, we found the internet to be an invaluable resource — maybe providing too much information sometimes — and I was able to avoid what the two Diannes encountered. (This _does_ seem to be a Di-Anne-a day here *grins*)
Blogs capture my attention now, both as an adjunct to our blog and as an appeasement to the retired teacher in me. They do lack a certain interactivity, however. Ours is mostly friends and family reading and posting, and we’ve been somewhat successful in nurturing conversation there, but…
FWIW, I like the idea of a Delphi like forum, as well. I wonder if a cancer forum in general would draw too many users, and yet I shudder at the thought that the over 100 types of cancer would each support a forum…
Thanks, again, for making space.
Stay hydrated and make a great weekend!
-Diana
Dear Kate,
I am totally hooked on the message board crack! I am slowly trying to wean off, I have been reading daily but not writing unless I feel that I have something important to offer. I quit after being attacked about my views on a nutritional supplement that my husband took during treatment and still takes. At one point someone said that they think I am nothing more than a sales rep on the board and that Brian isn’t real and boo hoo my poor children are going to grow up without a daddy. Pathetic. We have an incredible story of hope and I don’t even feel like I can share it there anymore. He is a 20 month survivor, is almost a year post whipple, and he has no evidence of disease, all this after being told he’d never be a surgical candidate and had “a year, probably not two”. So, staying off the board is something I’m trying to do.
You are incredible, and I hope the best for you. If you’d ever like to email me, you are welcome to do that.
Hope. Believe. Dream.
Sheryl
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