Hi everyone. I wasn't sure whether or not to post this but I figure "someone" might understand what I am feeling. Tomorrow is John's last radiation and chemo treatment. Our lives have been consumed with all of this since the beginning of January. Now I am feeling "what now?" What happens next? Our daily life has been consumed with so many doctors appointments,me worrying constantly about John losing weight, not getting enough nutrition, low blood counts etc. I never knew until I was the "caregiver" how all consuming this is. Before this, John was never sick a day in his life. John has his own business and has always been a work-aholic working 18 hour days. He hasn't even been to his shop in 3 weeks. I'm not really sure why I'm typing this, I just feel very unsure and asking myself - what next? Wanda

I know that you have heard this time and time again, but you really need to just take one day at a time. When my mom finished her treatment, I kept waiting for something to happen. You will never stop worrying! I have been dealing with all sorts of emotions since September. The more I worried, the more she worried about me. I have somewhat snapped out of that mentality. I am assured that she is doing everything possible to stay on track. She heeds the doctors advice and has kept a positive attitude. She is comforted by us doing the same.


Take Care,
Colleen

Hi Wanda,
Just because the radiation is done, does not mean he wil immediately start feeling better. He is going to continue to go downhill for another two to three weeks so all things you are concerned about now will continue. The road to recovery is different for everyone so hang in there for a while and neither of you should expect miracles overnight. Make certain he keeps swallowing so he doesn't lose that ability and yawning to avoid trismus problems. Take this one day at a time and keep posting. Here's hoping his is a speedy recovery.

Take care,
Eileen

Wanda, right now is the worst time of treatment. Congrats on your husband finishing. It will be a few more weeks before he starts to feel even slightly better, please be patient. Radiation continues to work on his body even after treatments are finished. There still will be lots of follow up appointments for a while yet. Just make sure he stretches his mouth wide open several times per day. Hang in ther its almost over

As you have heard the next few weeks or so may be the worst yet but he will walk out of that tunnel one day soon and a very slow recovery period will begin. He will start out with one good day and say 3 bad ones and slowly the good days will outnumber the bad ones until the good ones win out.

Many of us did feel abandoned post Tx since we were so use to being treated every day and then BAM, nothing so it is a let down that you really aren't well prepared for especially when he gets a sore throat or a cold or anything that might send you both off the wondering cliff.

I have said many times over that the mental part of this disease is at least 50% of the battle and we are seldom treated for that part. Some end up taking antidepressants to deal with the post Tx period. Just like everything else, we can all react differently.

Wanda,
I weathered TX pretty well and I was at my worst by the end of RT. I really didn't feel much better for a couple of weeks, but other than a rather bad neck burn I wasn't really in bad shape.

Within a month I was doing OK, but had no appetite and bad taste. Then my PEG got infected again and started bleeding so I had it removed early and with no appetite and lousy taste began losing weight.

It took a few month to get my taste and diet issues under control. Now, seven month later, I have to watch that I don't over-eat! Life is pretty much back to normal except I worry about recurrence.

After TX ended, I felt wonderful to have it behind me and I never had a sense of loss or missing of the daily RT routine. But then I had a weekly appointment with a doctor for the first month or so. I still have a lot of doctor appointment.

Also, at the end of TX, me and my water bottle started taking a long walk everyday.

Best of luck to John for a good recovery

One of the main things is having not to gfo for treatments dailey. You are going to try and figure out what to do with all the time you won't have to be on the go. It's tough being so schedule free for a couple of weeks, then you go back to doing normal everyday things. I'm glad John made it thru and wish you both the best of everything.

Wanda,
I understand how you feel. Now that my mom is gone I have NOTHING to do with my days while my sisters are in school (I'm 7 months pregnant so that will be changing soon!).

After mom finished radiation she was relieved, but was surprised at how long it took to recover. The worrying won't go away either. It will lessen with time. Just take the recovery time as slow as he needs and he will be back in his shop before you know it.

Whats next, is you will actually start thinking about yourself for a change!

Take a day for yourself!

Amy

I understand how you feel. A week ago I finished 7 weeks of radiation/chemo treatment for a stage 2 tumor on the base of my tongue. I have been very frustrated by how long it's taking to recover. My doctor has reassured me that I'm doing fine and have actually improved quite a lot. I know this is true, my neck burns are gone, I have more energy, etc. But I am much more conscious of still suffering from the basics: throat pain, difficulty swallowing, thick saliva, inability to eat (I have a peg tube), sleeping problems and the like.

However, reading the replies above has already given me a sense of relief. I know in my head that patience is the answer, but hearing others' similar experiences has calmed me down. As David CPA said, I have experienced 3 bad days for every good day.

This is the first I've heard about making sure to open my mouth wide regularly. What does this do?

David

I just re-read the original post and realize I didn't address slim/Wanda's concerns at all. Speaking for my wife, who has been here for me throughout this entire ordeal, it is very important that you now start making time for yourself. The worst is truly over and it's not as important that you are at John's every beck and call. If he is anything like me, you are definitely going to have to reassure him that he is getting better since there will be many days when it will be hard to tell. But you should also be able to schedule in time for your work, or to have lunch or dinner with friends, or whatever it is that will help you feel like life is coming back to normal. I know my wife has felt guilty at times for taking her own time, but it's definitely improved her outlook whenever she has.

Best of luck!!!
david