Finished Treatments But Now What?

My husband with tonsilar cancer T1N3 had a neck resection in June, tonsillectomy in Aug, and October 31, completed 7 weeks of radiation and 3 doses of cisplatnim.... Overall, I can see tiny tiny steps of recovery but he is SO TIRED and still not able to tolerate eating ANYTHING (only small sips of water), is keeping his weight up through the feeding tube and jevity (never thought I would be so greatful for that tube but it has been SO helpful for him to keep up!)..... but it is so hard not to know what to expect. The 2 weeks AFTER the radiation were the hardest- most pain, most secretions, most fatigue, any emotionally, the most discouraging. People keep telling us that things will turn around, that he will be able to tolerate smoothies soon, that his energy will come back.... and I KNOW it is individual in recovery but what has been your experiences???? He was so hopeful to get that tube out as soon as he could keep up with eating and right now, that seems so far away. I figure I'll have the nieces decorate the cans of jevity for thanksgiving but now I am wondering if we'll need to order more cases and be decorating cans for Christmas too....
We seemed to rally so well DURING all the treatment time. It feels like now is really a harder time than we expected. Does anyone have any words of wisdom for how to help this recovery time? Any tricks to help his throat feel better? (besides the narcotics). The robitussun seems to have helped thin the thick secretions a bit..... but still, its hard to have all this linger. For those of you ahead of us on this roller coaster- any advise? I am feeling so tender about it and so want to make it better and maybe cant but if there's anything that can help, would love to hear about it.... thankyou thankyou thankou. Martha

Martha,

Hang in there...the 2-3 weeks after ending is the toughest. You're just kind of out there on your own. I remember being very frustrated and wondered if life would ever be ok again. Not only is it ok, it's fabulous again. I could feel the turn around very slowly beginning around days 15-20. Three to four weeks out it is all constant improvement. If you're not seeing something similar, I would check in with the docs and get their thoughts. It seems that just as you think that it can't get any worse, your world will start to turn around. I forced myself to get out, started walking, and even began running and training about four months post. Best of luck.

Regards,
Rob J.

Hi Rob.
Thanks for your words of support and hope. He IS coming slowly, slowly, each day a bit stronger on the daily walks and less of that hacking up so I am learning to be patient, accepting and your words make me hopeful. Seems every step is a trip in learning how to be thankful for those little tiny things and not get too discouraged.... He is hoping to do triathelon training again in the summer but that seems like a LONG ways away... I''ll be happy just to see him eating again. Thanks again. It helps SO much to hear from those who have been down this road. Martha

Martha,

I stopped radiation 8-29-2005, and had my neck disection on 10-24-2005. I started running, and could have done the NY Marathon 2 weeks ago. I was back and running 20-25 miles/week by last June. He will come back and life will be better than before.

Rob

Hi Rob.
Gary was so heartened to hear of your marathon-ready training!
Hope all your follow-up tests remain clear!
Thanks again for your support. Martha