I have been absent for a little while. We have been trying to put our lives back together. It has been a difficult road. some days fighting, arguing, reconciling, etc. etc.

I have a question and am in need of advice.

Tomorrow we will go to the gastro doc to have the feeding tube removed. Harry is scared to death about this prospect but I move forward anyway because it has now become a crutch.

but my question is this....

on the same side that the nodes had been swollen, he is complaining about a terrible pain in the neck that is bothering him. He has had no surgery. When I look at him I see a small area that looks like it is swollen as compared to the other side of his neck.

Should I be concerned about this or is it just an after affect of the radiation and chemo? How long should we wait until we seek the docs opinion. I am afraid that we are going to walk this path of over reacting every time he feels something at all.

Additional note, when we went to the docs for the results of the scans, the dos said that they looked good and there was an area that showed on the tonsil area (my husband doesn't have his tonsils and hasn't for over 40 years) that he claimed was a residual of the radiation.

Thanks for your input!

Cindy

Cindy, Glad to see you back. I have been wondering about you and Harry. His temperament
sounds so much like John's. Can't post to the above, but just wanted you to know I've been thinking about you. Amy

Some people here have been on feeding tubes a year. The pain could be caused from thrush. I had ulcerations that took months to heal. More than likely it is a side effect of the radiation/chemo. If it were me, I would see an ENT or Head & Neck surgeon and get a clearence from them before I got the feeding tube removed.

Emotionally speaking, this is probably the worst time - be patient, hang in there.

Just an update. The ENT has scheduled a laryngoscopy for Monday. It appears that the Onc. is concerned about the pain in the neck (once again, this time it is not me for a change).

Harry is now convinced that the cancer is not gone. This whole thing has led to even greater stress.

Does a recurrence hurt? Will it manifest itself that way? Can a recurrence happen this soon after treatment? He will be one month cancer free tomorrow.

I have also discovered that he stopped taking his antidepressant without telling anyone and he has fallen into the information pit we call the Web. He is now reading all of the medical and statistical data on SCC base of tongue and pretty much scaring the shit out of himself.

I told him what many of you told me.... don't get caught in the statistics. Do you think he is listening to me? Not hardly!

We go for a precheck tomorrow with the ENT and to get registered. They have to put him under for the procedure which he is also not thrilled with.

I realize that all of this is a pain in the neck (pun intended) but I just wish that he could find a better way to cope. It makes it very difficult on both of us.

Thanks for your help!

Cindy

Hi Cindy,
Well if he has finally 'fallen into to WEB', maybe you can get him to log on to this site and get some support and info. Pain is not good, but it is good to have it checked out. I think if he finds out he is not the only one with this cancer by logging on here, he may become a more responsive patient. Going thru this treatment is not fun, going thru it alone is terrifying. Push him to visit this site and maybe finding others with the same problems will help him.

Take care,
Eileen

Hi Cindy; I am one of those odd persons who had a recurrence within a month. The neck was sore sore sore and I whined and complained about it while the docs scoped and poked for four months. Finally they did an MRI which revealed a mass...just where I said the problem was. The surgeon cleared his decks and operated immediately doing an extended radical neck dissection. I was sure this was the end of the road for me..yet it's funny how it goes. Here I am 5 months later with my latest MRI as clean as a whistle.
I am aware of my poor prognosis, the docs have reminded me enough, but my good friends and the people on this board also remind me that optimism is a right and is not to be surrendered without a real fight. I also dropped the anti-depressants, only to find myself slogging about in a bog of fear and foreboding. Needless to say, I started them up again pretty quickly.
Although I didn't like spending time in hospital, the surgery was a "short sharp shock", and with the help of a good physiotherapist the recovery is not too bad. Radiation, as you have probably heard from many is the gift that keeps on giving, even after surgery. The stiff radiated tissues are harder to stretch, but if you've come through the rads, this will not be an overwhelming experience by any means.
Please feel free to email me if I can help. I am grabbing a few days by the lake next week but will check my 'puter regularly.
Hang in there...the worst is past.
All the best, Fran B.

was just wandering what u guys found out?

Doc said everything looks great. But he has developed sleep apnea so he has to go and have a sleep study done so they can fit him to mask that he will wear at night to sleep.

Doc said that the radiation made his pharynx very rigid and that is why he has trouble breathing at night.

It is so bad that I sleep on the couch because I cannot sleep with him. He stops breathing numerous times a night and then makes terrible noise when he gasps for air as well as shaking and stuff.

Funny thing is, he has no idea that it is happening. He just sleeps righ on through it all.

But as far as the cancer, doc says everything is great! Here's to keeping it that way!

Thanks for asking!

Cindy

That's great news, Cindy.