I am six years out of treatment and I still have the same pain as I did over all these years, the drs are blaming it on the tissue damage from the radiotherapy I have just spent another week in hospital with pneumonia due to the aspirations into my lungs. I have also just had another throat dilatation. I know I should be used to it by now, but at the moment I just feel so angry. I just feel like I have had enough. The only thing that keeps me goiing is my family and my six beautiful grandchildren. Thanks for letting me vent.

You are not crazy. You should not be used to it. And the people we love are what makes life worth living. Have a rant and a vent then get back to loving (and being loved by) your family and six beautiful grandchildren.

Oral cancer sucks but there are some things it can't take from you.

Hi, Margiel - absolutely, vent away. I wonder if the fact that you are taking such good care of yourselve with diet and fitness make the contrast with your poor damaged throat and the rest of your body all the more annoying. If you were an 'old' grandmother it would be just one more thing, but you strike me as a 'young' grandmother.

You are so lucky to have 6 grandchildren, though. I don't have any (yet) and always borrow grandbabies to hold when I get the chance. Best wishes from the other hemisphere and keep fighting the good fight!

Maria

Hi congrats on being six years out that's fabulous! I hear you onthe side effects! It sucks! Feel free to vent - its great yourw doing all you can to feel your best. Take care and hugs...

Hi Margiel:
I am so glad you posted - I thought I was the rare one who still suffered, now more than earlier after my treatments, with problems, which the doctors all end up saying are associated with after radiation effects. I know my throat was damaged, but several years ago, I was able to swallow better than I can now. I also have the most putrid sweet foul taste 24/7 in my mouth whether I eat something or not. I know our tastes change, but this isn't like something sour tasting sweet, or something sweet tasting bitter; it's foul sweet whether I eat or not. The mucus goes from frothy to pudding, no matter if I drink water or not. I've been to numerous ENTs, gastro drs. to no avail - end up with the diagnosis of after-radiation effects. I'm still trying though - going to a specialist in Vanderbilt, Nashville, TN next month. There, not that I've had my "vent" I feel much better. Just wanted you to know you're not alone.
julieann

Greetings Margie and Julieann. I too am a member of the Nasty After Effects of Radiation club. I had a modified radical neck dissection in addition to chemotherapy and radiation in 2005. I have the ongoing mucus "goo" and that putrid foul sweet taste. I just had the titanium bar removed from my chin and debridement of the dead bone in my jaw. I think there are a number of OCF members with effects several years out. I'm very happy to be around to vent, and I am very happy that strides have been made in the delivery of radiation so that fewer survivors will be plagued by radiation's longer term effects.

thank God, there are some others out there who are still suffering, I dont mean that I am glad you are in pain, but at least you understand. Todays pain is unbelievable and I feel like doubling up on my meds, but I wont, it is only two hours till bed time and I can take my sleeper friend and get a few hours. My tongue is burning, my jaw is aching oh well you know what I mean. Maybe one morning we will wake up and it will be gone. We have to live in hope anyway. Thanks for your help.
Margie

You are not alone with the pain. My shoulder has some big issues since my surgeries a few years ago and still aches. Some days are worse than others and I will have facial muscle spasms which stop me in my tracks. Do the very best you can with what you have. Here in the US there are pain management clinics. I havent been to them but Ive heard good things about them having lots of options to help. You have OCF so you are never alone with your after effects!

Best wishes for many better days ahead!

One of my riding buddies is a neurologist specializing in pain management - among her patients are cancer survivors dealing with chemo-related neuropathy and other treatment-related issues, so perhaps a trip to a specialist might help.

Julianne, hope that your trip to Vanderbilt yields good results - be sure to let us know how your trip goes.

I am still having aftereffects of my treatments, after nearly 3 years, but, hey, guys, we are all still here! This is a great place to come and vent, though. Right now the neuropathy in my feet is really annoying, and I really wish that I could enjoy eating again. Hang in there, Margie!