OP "OCF across the pond" Supporting Member (50+ posts) Joined: Jun 2014 Posts: 56 | 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.
Mar 99 white patch tongue Dec 11 white patch changed shape. biopsy neg Sep 13 white patch ulcerated. Biopsy Nov 13 diag Tongue SCC T2N2BM0 poorly Differ. Dec 13 Hemigloss. neck dissect.Trach.Caldwell Luc (suspect cysts inside face, neg), teeth out. forearm flap, abdo graft Feb 14 PEG tube Feb/Mar 14. 30 x radio 60gy Grade 3 Mucositis, burns, hair loss, very ill. Nerve damage ear neck shoulder Jun 14 *now* PEG out. Have lost 98 lbs in 1 yr. Anorexia. Dysphagia, liquids only. Dysphasia. Fatigue.
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