Hi all

Just dropping a line to wish everyone well.

I do check in regularly and often go to post, but when i read stuff written by some of the wiser heads i tend to leave you to it!

Enjoy the sunshine next time you see it!

peace
jp

Jon, nice to hear from you. Your experiences could be helpful to others. Everyone here is slightly different with their diagnosis and how they experienced different side effects and after effects. Hope you are doing well and best of luck with your continued recovery and improvements.

Jon, please do not let the few that are buried in "science, or didactic knowledge" prevent you from joining the dialog. The most valuable thing that happens on these boards, is the emotional support, the reassurance that there are people like you out there - that made it- especially when a newbie visits the boards. We all rejoice in your survivorship, and do not hear the positive stories often enough. If you are silent, others will not have the gift of your positive words about the life you now have after your battles. Hope is a gift that you might give, to someone who is now as scared as you were awhile ago. Do not think so little of what you have to offer, it is a significant thing.

I want to second Brians sentiment. We are really all in the same boat, and the disease does not give a damn if you know (or think you know) what is happening in your cells. It is your personal experience that is relevant.

cheers

M

I feel just like Jon. I read the newest messages every night but I feel I have nothing to offer since I'm not sure what has happened to me or is happening still. I seem to be getting worse instead of better. I even thought I had floor of the mouth cancer and just found out when my ENT wrote a letter for my insurance company and stated I had tongue cancer. I finished radiation and chemo Jan. 22nd and my mouth just gets worse. My ENT says he doesn't see anything of concern but I'm getting where I can't eat again and I've had my feeding tube removed. I am going to request another look this week.

Hadn't really thought that way... will def try and add something each time i read now!

This really is a cool place.

:o)

I'm with Brian as well. I know it can be a little intimidating when some of the posters here are not only more knowledgeable but also just write much better than I do but sometimes people just need to hear from a wide variety of experiences from survivors and patients and caregivers to give them hope for their own future.

Bloop, this is Brandy, Bonnie's daughter and I felt the same way after my radiation. And you will feel worse before you will feel better. I never thought I had a lot to post as I never really healed after radiation treatment and actually had hyperbaric oxygen treatments for ORN.

Well I had to google what hyperbaric oxygen treatments for ORN was and it may be what I need. But I'm not sure because my ENT (or ex-ENT now) always says I'm fine. I got scared the other night because all of a sudden my swallower didn't swallow. I just came to a standstill and I freaked. I went to the emergency room and the nurses there said I need to go to my ENT and get a biopsy. I realize they're not cancer specialists, but I need to get a new ENT and have the spot they referred to checked out. It is from my first surgery last July (partial glossectomy) that has not healed yet. And now after radiation following neck dissection it is affecting my swallowing. Very unnerving.

What tests did they do to check that area? Make sure your new ENT is familiar with cancer patients. There are a couple different kinds of ENTs. Ive heard that there is one ENT who is a surgeon and another who doesnt do surgeries (think I read it here).

When I wasnt healing after my big operation, my ENT got me into the HBO treatements, a wound care specialist and an infectious disease doc (for IV antibiotics thru a picc line). Its all due to what you wrote, trying to heal a readiated area.

Hope you find a good ENT quickly and get this treated. Best of luck.