I feel silly but I have been just hoping this would go away and we my husband and I could make it... Last dec. he was diag. with scc and we went to dana farb. in boston, we were lucky to get in quickly and received the best treatment, chemo/rad and just finished with neck disection)he is currently in the kitchen coughing like he seems to do always, unable to really eat as yet he only had the staples removed yesterday and the path report was unclear but did say that there was one node with cancer removed and the dr. (not his regular dr) felt that this was to be expected and he was doing great... well great is relative... yesterday was my birthday (i am his wife in case i didn't say_) and all i wanted was no more cancer... lets just get our lives back I am losing my head and feel so guilty... after all he is the one going through this but I feel helpless in this battle... we have been told he is doing great... but every time he tries to eat he coughs and chokes and it is horrid, there has to be an easier way... also i am concerned with his mental state. he seems so much older mentally since this happened, i am sure the radiation played bad tricks on his brain he fortunately doesn't see it , but it makes me very concerned and if one more person tells me everyone is different, i will scream


screaming.
sll

sll,

No need to feel silly. This sort of thing wreaks havoc on the care-givers as well as the patients. If the docs say your husband is doing great, then believe them as they see many patients every day and can make pretty fair comparisons, even though it may not look like it to your eyes. Most folks have a very rough time with the treatments for this disease and it sounds like your husband is one of them. He's still pretty fresh from treatment and it takes some time to recover. But it will get better.

I had both chemo and radiation, but no surgery. I know that my mentality is different than before treatment. I think part of it is a result of the treatments -- seemingly slower mental processes and so forth. Chemo-brain, if you will. But I think part of the change also results from simply having gone through the experience of diagnosis, treatment and recovery. I'm not quite the same guy that I was. My perspective has changed. In some strange way, it's a little like being reborn. I often jokingly tell my friends that I'm not the guy I used to be, I'm just what's left of him.

In any case, welcome to the forum and happy birthday.

-Brett

Dear SLL
Being the caregiver is not an easy task. I often felt guilty, helpless, hurt and mad. Fortunately I found comfort at this site because so many of the caregivers posted and vented and revealed similar situations and feelings. Time will heal the coughing, choking, gagging reflex that comes with eating. As his energy returns so will his spirit. However, life with C will forever be part of your life I' m afriad. So cherish great check ups, clean scans and remission. Hopefully after a few years of those your C will be just a memory.
Wendy

SLL,

The radiation may or may not have played tricks on your husband's brain, but it's a fairly safe assumption that having cancer played some pretty nasty tricks in and of itself. When you're going through extremely painful and debilitating treatments day in and day out, and focusing long and hard on survival, your brain reacts in ways that are much different from what you're used to in the normal daily routine. That's not to say that the brain stays that way permanently -- many of us here will tell you that our life after cancer has improved in a variety of ways, including mental outlook.

It sounds as though he's had good treatment (I also was treated at Dana Farber), and the doctors at DF certainly see enough head and neck cancer patients to give a realistic assessment of how he is doing. How is your husband's weight compared with before he started treatment? What kinds of things is he able to eat at this point? Nutrition is extremely important at this stage, but even with soft foods it's very common to have problems with choking and coughing. Hopefully you and he are getting regular suggestions from a hospital nutritionist to help with his eating needs.

Recovery from this illness is a long and often frustrating process. Do you have family/friends that can help in one way or another? Also, if you're not already doing this, you might want to get into a caregivers support group.

Cathy

sll,
I wish I could say it gets easier but it doesn't always. My husband is a yr + post treatment still can't eat much ensure soup oatmeal . Just had a lobe of his lung out for ca . I am having a hard time with the depression and the stubburnness on his part not to take anything to help himself.He takes it out on me and my daughter and screaming is minor on what I feel like doing.I just keep asking does it ever end?
But then keep working 40+ hrs and trying to keep things normal for my 16yo You will have bad feelings . Hopefully you'll not let them overcome you
Diane

Sll, Welcome! Screaming is allowed here. I do not think the radiation is cause for any "brain" problems. Generally they avoid nuking the brain. The whole process is very taxing on the mind as you have found (it seems) for yourself.

His post treatment side (after) effects sound quite normal and he was treated at one of the best places in the U.S.

My humble suggestion is that you get him active and then wait for a few more weeks to see improvement.

Take care of yourself as well

Sll what you are describing unfortunately is pretty much a normal course of events. All the way down to the feelings you are having of helplessness, and then feeling guilty for wanting your life back. I think my run in with this disease was tougher on my wife than it was on me sometimes.

So that's why we're all here, so you can scream, complain and vent to us, we've all been there on one side of the fight or other, either as patient or caregiver, some of us have done both.

As far as rad playing tricks with the brain, that's been a pretty highly discussed subject, do a search on the board for "chemo brain" and you'll find that we've all got some signs of something similar.

Thing is, once you find out what you and your husband are going through is normal for this stage, it seems to not be so bad. Doesn't make it any less of a problem, but it starts to become a "normal" problem if that makes any sense.

Hope things get better soon.
Bob

sll,
I so understand what you said about there has to be an easier way! I often feel that I should be able to deal with all this - especially the eating part - in a "sensible" way, that there has to be a way I could eat 2000 calories a day without too much trouble, even if I do feel sick and my throat hurts and there does not seem to be a hole the size of a pin in my swollen throat. And the doctors saying I am doing fine, when I feel like crap!!!!
Only thing worse would be having to watch somebody I love go through this, and that's what you are doing.
Do you get a chance to take time for yourself? You have to take care of your own sanity. Try not to feel guilty. I watched my husband go through heart bypass surgery, and he drove me crazy!!! Sometimes I just had to walk out on him - and yes, I felt guilty about it, but now I understand that I was helping him by keeping myself healthy.
Good luck,
Leena

i am sure you hear this often, however, there is no way that everyone who wrote can understand how much i want to thank you all... let me say i am just beginning to learn computers etc. and my daughters run circles around me, but they should...

yesterday we went to brimfield, for those of you who like atiques this is the event.... it is not an easy job, but jim (my chemo brained husband) thought he could handle it, he did fine but it was not easy, he got angry for really no apparent reason, he asked me a question and i didn't reply quickly enough i guess and off he went i was shocked and for whatever reason thought i should defend myself, wrong--- but today is another day... and i went on line thinking maybe i could find some sort of quiz that i could give him to help him see he is not normal and maybe he should try to work on that part of his brain that the treatment damaged... i thing the treatment damamged me... he is fine today (not exactly fine) he went to the store and fell up the curb into the doorway of the stop and shop (a large grocery chain here in ma) and when asked if he was ok he of course said sure... in a way thank god for chemo brain, ordinarily this would have been devastating not now... oh and by the way i was not there... thank goodness... i would have been accused of trying to be his mother... again


thank you everyone

I think that most of us were trainwrecks for a while so try not to take it personally.
If he was Dx'd in December last year then when did he complete treatment? March? I was Dx'd in Dec. 2002, Tx completed in March 2003 and in July 2003 I still a mess. At that point energy still has to be carefully doled out. Even in September I was still a mess. He may be trying to take on too much, too early. Some of us have to take baby steps towards normalcy. I am about 95% now and it has been 16 months post Tx.

My wife not only considered divorcing me but actually went so far as to consult a lawyer.

Between having a disease that one can only imagine in their worst nightmares and than having a horrific debilitating treatment and "recovery" it surprises me more that we do as well as we do.