My husband finished his 41 rad/chemo treatments today thankfully, and we want express our appreciation to everyone, especially Marica for your support. It was the longest 2 months of our lives, but now we look forward to recovery. Our experience was a little different it seems, he handled the treatments as well as possible the first 4 weeks, but it rapidly deteriorated at that point. On top of the dehydration, lack of nutrition, etc. he developed an infection and high fever, so after 8 hrs in the ER we were finally admitted. Everyday in the hospital there were mistakes made with his medications, tests etc. so for a week he was not getting better, he apparently was very close to being in a coma. We stayed with him 24 hrs a day for that first week, it was probably harder on us than on him. I've learned hospitals can be dangerous places, so if you or your loved one must go, pay close attention to everything that goes on and be a strong advocate, and leave as soon as you are able. He was in for 2 weeks; once he was home he started to improve, and the remainder of his treatments were tolerated better, except for the last 2 days, but that was due to him receiving double treatments on those days due to lost time. Overall the worst part of treatment for him was in the middle rather than the end of his course of treatment. Now we're wondering what others have experienced in terms of how long the pic line will remain in, how long on strong pain killers? Thank you so much for helping us through it.

I wanted to tell you that I feel the bittersweet moment you shared with us!!

You are a saint for being there and your husband is a trooper!!

I vividly remember the day my radiation was finished and I want to share some of my experience. First, I am having a glass of champagne in honor of your husband's completion of the therapy (any excuse to have a glass of champagne:)

These are just my experiences, I am not a Dr and this does not mean all or any of this might be the same for your husband.

1st don't rush the PIC line removal (unless you have an infection issue or something) and I recommend getting a plan from his pain management Dr to start tappering pain meds.

They can make one sicker than some of the treatment.

For me, the worst was the first few days AFTER treatment...

For one, the radiation effects were delayed and got worse after, but I survived ok.

Next, I fell in to a DEEP depression, (I guess that's what it was) a feeling I can't explain..I've read it's fairly common and may have something to do with how anti-climatic it al is, how there's a realization that the journey may have just begun, I don't know...but it would maybe help to watch for the depression, and maybe have some rx plans to deal with it.

For me, it was a couple of weeks of pure hell...crying and weeping all the time...wondering when the cancer would return (It may have this week by the way:( ) and dealing with all the emotions that I was too sick from chemo and radiation to deal with...maybe it was because I was so busy trying to stay alive from the treatment, I forgot about the feelings? I don't know. I am sorry if I am making this all about me, but I wanted to give you a head's up in case it hits him like it did me.

Anyway, I am enjoying a nice glass of chilled champagne...6 months ago I would have sworn that I would NEVER be able to even think about drinking wine again (could barely drink water for 2 months!) and eventually took EVERYTHING by the PEG TUBE ...so there IS light at the end of the tunnel...

Congratulations to both of you for finishing the treatment!! Well done. It is a battle. I agree with Michael, the depression is a real possibility. And remember, depression isn't always about mood - it is sleep disturbance, appetite disturbance, lack of focus, short term memory glitches, AND maybe mood stuff - like sadness, fear, listlessness, agitation, impatience, etc. Its very hard to combat without meds, and the meds can take a while to start helping - so have a plan.

Hydration is the other huge issue. That pik line is a great way to get fluids into the system, so don't get it pulled too soon. It would be wonderful if the post radiation symptoms were minor, but don't count on it. Keep the rinses and pain meds close by. Pain is much easier to manage if you stay ahead of it. Getting behind and hurting is much harder to fix. And remember "vertical is good". Welcome to the ranks of survivors. Tom

Congratulations, Deborah! What a major accomplishment it is to finally be finished with treatments. After the initial euphoria fades a bit, I caution you to measure progress weekly rather than daily. Some people subscribe to the figure of one month recovery time for every week of treatment, but I found that my recovery was much, much more rapid. I was on strong narcotic pain patches for two weeks post-tx because of severe burns to my neck and face from the rad. After that, I just took OTC stuff and was fine. It took a about a month for my mouth to heal up to where I could eat that way and it was a month after that when I scheduled PEG removal. It was important for me to get some exercise every day. I began with very short walks, going just a bit farther every day. I think mentally it did me a lot of good to be outside and moving.

I am very happy to hear that you have completed the obstacle course known as treatment. Nobody bounces right back, but you will see steady weekly progress. Again, sincere congratulations!

Deborah, I just wanted to give the other side of the picture from Joanna's, and I am not doing this to scare you but just because people vary so much and if your husband's recovery seems to take longer you shouldn't feel there's something wrong because of that. I am now 11 months out from the end of radiation and I STILL feel every month, if I look back on the last month, as though significant improvements have taken place.

I had such bad mouth pain from large mucositis sores in my mouth, a very raw throat, as well as a spot on my tongue that has always been a little sensitive since my partial glossectomy, that I was on prescription pain meds for four months after radaition ended before the pain got managable enough to take over the counter meds, and then there were another 4 months or so where I was taking over the counter meds almost nonstop (which isn't really good for you either). It's only been in the last two months that I find I generally can get by without any pain meds, and my mouth is still sore in spots, just not so bad I can't bear it. And I need to add that I've been through several other fairly painful medical situations in the last 8 years or so and have had doctors remark several times on how well I seem to tolerate pain, so I don't think this was because I just have a low pain threshold--I think it's more just about healing taking much longer for me from this specific treatment than it has for some others.

I also had the very thick phlegm hang around for about 3 months after the end of rad and I'm still having swallowing issues (which is because I have strictures in my esophagus from the radiation)and still have some problems with thick phlegm that I have to spit out every so often.

In addition, although I have most of my energy back, this past week (the last week of classes at the college where I teach) has forced me to realize I'm not 100% back in terms of energy. I pushed myself a little for about 3 days, getting 6 hours sleep instead of 8 and found myself just crashing on the fourth day. Used to be I could do that for months and just be a little tired-feeling! I did have another round of radiation to treat my breast cancer last fall, though, so the remaining loss of energy may be more because of that.

Anyway, one thing that is uniformly true for all of us is recovery and improvement does happen. It may happen at the rate of one month for every week of treatment, or faster or slower than that. But it happens. Have faith in it and have patience. And congratulations on the end of treatment!

Nelie

Doeborah,
They call us "patients" for a reason. Although I am one of the most impatient people around,I learned to be very patient during my recovery. First of all, the worst time for me was when treatment just ended. No more going to the hospital and being pro-active every day. I was at home with nothing to look forward to but my next tube feeding, and I got very depressed. However, by taking a walk every day, having a friend or relative stop by, and running a few simple errands each day, things began to turn around quickly.
The recovery process was slow...slower than the doctors had predicted. I was still on the pain patches for a few months, relied completely on the PEG tube for nutrition, and kept it for another 10 months, continued with swallowing problems and even had my espohagus diltated 2 or 3 times.
But, slowly, things began to improve. I began to be able to swallow ( although I lived mostly on soups and milkshakes and Boost for a couple of years ) and now...here I am: back to my normal weight, able to eat almost anything...even popcorn and pizza, able to make appearances in court and even try jury trials, snow ski, exercise, play golf as much as I want, etc. Life is really good. But for this bottle of water that I carry everywhere I go, and my need to avoid spicy foods that still burn, I am just about like everyone else.

Keep the faith...for most of us, things slowly improve and life gets so much better.
Best of luck....

Danny G.