Sorry for posting something negative, but I'm sad and I can't understand what I'm doing wrong.

I joined two facebook groups, one for survivors of tongue cancer, and the other survivors of oral head and neck cancer.

I posted only a couple of times in both groups, the last time, I was just asking for some friendly tips from other survivors - I don't even know if I *am* going to be a survivor yet.... tips about fibrosis in your neck, etc.

What I got back was just so hurtful and unfriendly.

One person said that he had been through much worse than me and accused me of complaining, he said "forget about your pain".

In the other group one person replied with just 3 words "ASK YOUR DOCTOR".

What is wrong with me? Why have they been so cold and unfriendly? I've had the same horrible experiences as they have, and aren't we supposed to be helping each other???

Honestly, I feel so hurt and rejected. As if all this wasn't painful enough. I'm so lonely.

8 years ago when I was searching for web sites to help me thru this Tx and recovery I went to 2 before this site and both sites were worthless. It wasn't until Brian found me on another site and invited me over here that I got lucky.

You can'tunderstand some people PERIOD!!

No worries, Estelle. We can't explain the behaviors of others. My take on that is that you weren't meant to be there. Keep searching for those who can love you and help you. They're everywhere.

Everything we face in life is as large as it is in OUR world and don't ever think you have to minimize your personal circumstances because someone else wants to beat their chest and brag they did more. It's not a competition and no medals will be awarded at the end.

The "right" people will appear just when you need them. Trust that, please.

Warm regards and best wishes for you.

Estelle,

I also belong to a few Facebook groups, but I do not rely on them for reliable information or support. I also found some of the folks on there to be outright mean to fellow survivors or caregivers - that is not the reason you join these groups!

I have found the OCF website and forum to be the best source of reliable information and support. Through OCF I have met other local OC survivors by attending some of the many OCF events (walks) that are held throughout the USA each year. There are face-to-face support groups in some locations, but not near where I live. I don't know what is available in England, but perhaps there are some support groups in your area. It really does help to connect with fellow survivors. In some cases you should ask your doctor, but that isn't always practical when you have a question at 3AM.

If you are looking for answers to certain questions you have, try using the search function for the forum. I've used this a lot over the years to read what other survivors have gone through.

Wishing you the best!

Thank you my dear ones for your compassion.

This is the best site because it has an excellent philosophy. Even people who do not have cancer but fear it are welcomed with open arms by people who have been very sick. We all understand fear and worry and the frustration of not getting the answers you need from doctors at times. I always understand your posts because you speak from the heart:)

Thank you for your kind and compassionate replies. It has helped more than you know. Cancer breaks your heart as well as your body. Need to heal.

Yes, Estelle - you need to heal - your body and your emotions and be gentle with yourself. This is the best place to be for healing and understanding and information from others who have been where you are.

Estelle - I have been told by people in the know that one reason this forum family is successful is because we are a "moderated" forum, ie we have moderators and administrators who read literally every post written on the forum. Misbehavior by members either gets deleted entirely or fixed in other ways. We simply don't allow misbehavior.

Other forums, maybe like the ones you mentioned above are not well moderated (if at all) and sadly turn into a free fire zone that hurts people feelings and reduces the forum's effectiveness.

Sorry you had to endure that, stick with us. You will get what you need.

Tony

This is a forum unlike any other. Just what goes on behind the scenes by all those concerned with the technology and the smooth operation of this website is awesome to consider. So many individuals are are involved and concerned with the safety of those who come here for accurate information and true, compassionate help. On the social media sites, although there are some positives, you can never be sure about the accuracy of any comments or advice given by unknown agencies or individuals. Years ago, when the internet was fairly new I saw a cartoon showing a smiling dog sitting at a computer, with the caption: "When you're on the internet, nobody knows you're a dog". This is true. Those who make hurtful comments are stupid and not worth your time. So, Estelle - stick with us. We always "play nice".

Hi Estelle, I'm really glad you shared what happened with this forum. I love what david said "you just can't understand some people period!" That's it in a nutshell.

Estelle you are WELCOME!!!

Facebook Is a weird place you get all kinds... I would never presume to tell a person to man up. (Or woman up) to be honest we all have our own pain tolerances and I'd be the first to admit there are many many others out there who've had a brutal time of it - moreso than I've had. I've been blessed. Admittedly it was no picnic (far from it) but I've heard a lot of stories that were far worse. No one should minimize another's pain.

As for the see your dr. Out of context it's hard to read into it. Perhaps it was meant to be genuine advice. It really depends on what you're asking but I can say that it's not necessarily bad advice, or maybe the reader wanted to reply but was in a hurry. Regardless, I find drs to e very helpful at a lot of things but if it's about side effects a lot of people here probably can give you a deeper look into the fall out for treatment - hugs...

Dear Estelle,

What an incredibly upsetting experience. I searched for forums when my husband was diagnosed and chose this one because it is moderated and there are policies (and consequences) for what is posted. It also seems to me that there are an increasing number of internet "trolls" who hide under the veil of anonymity and enjoy posting hurtful comments to others. I'm not sure if that's what happened in your case but at the very least, comments derogating someone's physical and emotional pain are pointless and hurtful.

Warmly- Sophie H.