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Wed, Jul 3 11:27pm · Meet others living with Head & Neck Cancer - Come introduce yourself in Head & Neck Cancer

A good surgeon, a date in the near future … This is great news. I wish you well.

Sun, Jun 30 2:35am · Meet others living with Head & Neck Cancer - Come introduce yourself in Head & Neck Cancer

Sorry to hear this. It's a real shock when this happens when you assume it is all over. It's normal to be scared but you will feel better when there is a treatment plan. I assume that there will be radiotherapy and chemo options and have heard that these are becoming more targeted with fewer side effects.
Know that there are people out here who understand what you are going through and wish you all the best.

Wed, Jun 12 5:18pm · Emotional implications of having a feeding tube in Ear, Nose & Throat (ENT)

@patriciagsr My heart goes out to you although it sounds to me as if you will be able to eat again. There is hope. I have had head and neck cancer and can eat only wet, mushy food. Yesterday I had a fit of self pity. I was hungry! But most of the time I'm grateful that I can eat anything at all. Many of my friends are tube fed or went through a long period on the peg.
No more social eating is a nightmare at first, you get used to it and for me a big frothy coffee while other people eat is my solution. I can eat some cafe food but it is messy. I had a coffee a couple of days ago with a woman who is tube fed. I had a coffee, we sat outside, we talked, someone came up and joined us with a big container of chips and offered us some. We explained why we couldn't eat them and an interesting conversation ensued. I hope this friend will one day be able to sip a coffee through a straw!
I'm very interested in your account of the formulas. I was on one for about 7 weeks and had no problem but some people hate them and would like to learn how to use an alternative.
Also interesting is what you say about sugar.
Go well. keep persevering, try to do the non-eating things you enjoy . I hope for a good outcome for you.

Sun, Jun 9 9:05pm · Meet others living with Head & Neck Cancer - Come introduce yourself in Head & Neck Cancer

@karenjf There are degrees of normal: okay normal and normal normal and some of us have the new normal. Sounds as if you are improving nicely.

Sun, May 26 8:28pm · Meet others living with Head & Neck Cancer - Come introduce yourself in Head & Neck Cancer

Well done! It's a process and there's light at the end of the tunnel.

Tue, May 21 10:04pm · Erosive oral lichen planus in Autoimmune Diseases

@maryz You have been having a hard time! It seems that thrush (candida) and OLP go hand in hand. Very painful.

Mon, May 20 9:55pm · Meet others living with Head & Neck Cancer - Come introduce yourself in Head & Neck Cancer

@karenjf I haven't had proton therapy but "ordinary" radiotherapy for SCC of the mouth. I think the side effects would be similar. The effects are ghastly with internal and external "burning" and difficulty eating. I just think you need to take the appropriate pain meds. They are not addictive if you need them. They're not harmful for a short period and it's bad for you to be in pain. You need to take the meds regularly so you don't get break through pain.
I was told two weeks too but I started to feel better before that – maybe because my radiotherapy was more limited than some. It was maybe 10 days before I noticed an improvement and after a short while I could stop the meds. Everyone is different though!
Please talk to you team about your pain and how to manage it. Wishing you well!

Sat, Mar 30 8:04pm · Erosive oral lichen planus in Autoimmune Diseases

Interesting post, @maryz You are indeed lucky to have had oral medicine specialists in the cities you have lived in and you've taught me a new term, stomatology. I had OLP before my oral cancer and still have a mild form of it. Very interesting about the fingernails. Would you mind if I shared your post anonymously with an oral medicine specialist here in New Zealand. She is not my doctor but she and I are on the same co-design committee at the hospital. I'm still trying to make sense of OLP and would like to discuss it with her. Before my ulcerative OLP lesion was diagnosed as cancer some years ago, I lived in constant pain with that sore tongue.