My husband is 6 months post treatments; his PET & CAT scans have been clean (for now). I know recovery is different for everyone but is there a guideline for when one feels better? The ringing in the ears, the tingling in the extremities, the lack of taste (or everything tasting badly), not able to eat anything spicy (his throat "lights" up), the overall general weakness have not seemed to have abated at all. Also, he seems very depressed but won't join a group/take meds/talk to anyone. He seems somewhat consumed with the potential mortality of the situation and that he has no control. To survivors and caregivers, is there anything I can say/do to make any of this better? He seems to be irritated with me if I try to do too much or want to talk. He also seems to be pushing me away so that he is not a burden to me;I don't feel that way at all but he has always been very independent and I believe this has been a very humbling experience for him. Is this normal and is there anything that you would recommend that I do? Any thoughts would help.

My David has been very hummbled by this. He was a very strong hard working He now is exhausted and at times very withdrawn.

Do his friends visit. Don't ask his permission ask them to stop by and see him. Keeping people outside of us seems to help my Davids spirits. He gets at times very non talkative. just stares at TV. Do what ever you can to get him up out for a small walk a drive in the car. Take a different route home from your next appointment. If he gets tired he will sleep. I am fortunate we live in FL and a short drive even across one the many bridges crossing he gulf will bring a light to him. He may be tired truly after that but the glimmer gets brighter and brighter each Time. The American cancer center publishes a book clled Caregiving and gives some fabulous information. I got it because I am particiating in a caregiver study. Keep him active in his home care.

SIt and just hold his hand...Rub his feet conversation is not always what is needed...

I feel for you as I have felt many days myself for my David during this. We strive so hard not to let the person they were get lost in all this.

HI, Annie, one thing that jumped out in your signature was that he had a thyroidectomy. Is he on a medication like synthyroid?. Many of the other things you mentioned are par for the course for months after his kind of treatment. It should start to get better over the next few months. My husband said I was at times an "over achiever" in the caregiving depatment There were times he just needed to be left alone. Amy in the Ozarks

Thank you to both of you for responding so quickly; I feel like I am so alone in all of this. Jam, he is not currently on any medication; is that something I should check into? I would also say to you, and I'm sure you know so much more than I do at this point, it's hard not to be an "over achiever" about someone you care about.

Thank you to the caregiver in Florida; it is SO hard to see the person you have loved for a long time, independent, etc. feel like their life has changed so dramatically.I wish so much to do something but your suggestions were perfect.

Have either of you found anything that either works to talk about or what to avoid (maybe you just take their lead?)? I thought I knew my husband well and it has actually been more difficult since the treatment ended and he got the news of what his "life" would be like than before. When we were in the "fight", he was willing to do it (the kids, etc.) Knowing that so many of the ailments could (not defintely) be permanent has been very hard. I think he thought if he could at least get to 6 months, life would be better.
Thank you so much for you help; I wish I had seen this website a year ago.

Annie, the extreme tiredness is a classic symptom of low thyroid. If he has NO thyroid, he could be in a world of hurt. You really do need to talk to his doctor sooner than later about this. When he has more energy, he will feel 100% better. Getting his thyroid levels adjusted could be the key to his outlook improving dramatically, and yours as well. I sincerely hope the answer is something that simple.

Thank you both so much, feels like we've been going thru this alone. As I said, wish I seen this site before. Will do all of that with the thyroid; anyone else see the grumpiness/meaness? Not to be a martyr; isn't it darn hard to be a 24/7 happy caregiver?

Thank you Joanna, after seeing a site like this, just wish I'd seen it sooner. Thank you for words of kindness and support. I didn't realize how much of a difference it made; thought I was doing it more for my husband. Now selfishly realize how much I am getting.

Thanks to all of you! Annie

Annie, if you were getting copies of his lab work check to see if they did a TSH which is his thyroid level, if that has not been listed request that they do one.

CG:Husband Larry,age 61, T1,N1,Mo Squamous Cell Carcinoma. Finished Treatment 5-31-07.

He should have had a baseline TSH done before treatment started and a TSH test at 6 month intervals (at least that is the NCCN guidelines for an irradiated thyroid). Having a thyroidectomy I can't imagine why he is not on synthroid (unless they left a piece of the thyroid behind).

Annie,

Glad as well it is not only me feeling as you do. I am Davids caregiver 24 hours a day. It is tough watching him go through this. He too has told me I hover too much. Some times as Jam says he just needs his own thoughts. But I know he knows I am right there.

He has been very rel;uctant to really accept al this thinking he will not go through what others have. He did not read the material and information I have found here to help. As we all go through this you think you understand when they say you will have pain here, you will have this and that you will have these symptons but in DAvids mind it did not all register and truly he did not think it would happen to him. I now p[rint and read the information even if he is just watching TV and not in comunicative mood I just read to him. This has really helped I think. He will stop and even ask questions and many times he has said he did not really think this how the pain would go this how exhausted he would be. But it has been good for him to know others are going through. He is not the only man going through this and all are having different but same issues and most of all it is OK.

Annie M,

All good advise above but I also want to chime in about the mental part of this recovery.

First, physically the recovery is painfully slow. Most of us are accustomed to getting better much faster after being sick so when that doesn't happen it can prey on an already fragile mental state even though we constantly read or hear that our recovery will take a long time.

I am 10 months post Tx and am pretty much back to my normal sans some dry mouth but I remember dealing with some pretty tough mental issues just a few months back. I really wanted to retire. I really questioned how much longer I would live and really didn't want to work till the day I found out I was going to die. I even got madder when my wife, my caregiver, the person that saved my life more than once, my vida told me she was not ready to retire and she wanted to work another 10 years because she still had goals to accomplish. TEN YEARS, are you kidding me!! I could have a reoccurance tomorrow and only live another year, I kept saying to myself.

Well as they say, time heals all wounds and now my life has returned almost to pre Tx normal and my mental health has also readjusted itself. I no longer harbor feelings of impending death but I look forward to the future. I have found that the more things I do now that I used to do, the more normal my life feels, including my mental outlook.

Each of us, including you caregivers have to deal with the cancer deamons in our own way and we don't get much help along that path and I'm really not sure if someone trained could have helped me. I really needed to deal with my issues myself.

I will say this though, that I credit this site and all the unbelievable people who post and share their feelings to help me deal with everything so I guess I really did get expert help. It's tragic how you almost never see both the cancer patient and their caregiver post together. Certaintly both need to.

It's true, what David says about how we all deal with the cancer demons in our own way. My son and I didn't find out about OCF until he was half way thru his Rad treatment and it has been a lifesaver even though he found it difficult to come here for help himself. When something in particular applied to him, I would tell him about it and when he resisted, I printed out copies to leave by his bed and from the comments he made later, I knew he had benefited from someone's compassionate advice. In all, he has only posted maybe 3 times. Perhaps the reason we don't often see both the patient and the CG posting together is that either one of them may not wish to expose their own worries or weaknesses on the other. I once suggested to my son that I could stop accessing the site, or posting, so that he could talk about whatever worried him without his mother knowing or being affected by his comments. He declined. When we first found out about my son's SCC, the first thing I wanted to do was check the internet for everything I could find out about it, but I was afraid to find out - afraid to find out the worst that could happen. It was several days before I could do it and only because I knew I had to find out so I could help him in any way I could. Just typing the words "squamous cell cancer" was so painful for me. So I can well understand the reluctance of either CG or Survivor to both post here. My son is 7 months post treatment now, still with some dry mouth issues - energy and tastes not completely normal - but he's ever so much happier and doing extremely well. And I am too! Annie - things do get better.

Regarding the thyroid issue-they did leave a part behind which will be removed this October, followed by Radioactive Iodine? So maybe that is why he's not on the meds you mentioned. To be honest with you all, it seems like we were dealing more with the treatments, going back in the hospital (no PEG), ER visits that it was kind of difficult to keep up with everything. His visits with the endocrinologist seem like they were ok; I just didn't realize what a difference a partial thyroidectomy vs complete was. Thanks for the help with knowing what to ask/look for at our next visit which is in two weeks with the radiologist.
As to the mental aspect, thank you David,Anne-Marie,Caregiver in Fla. I am so happy to hear that even a few months make a difference. I think he was disappointed because he made some strides after about 2 months post tx but then hit a plateau so knowing that there is not just hope but genuine possibilities to make further progress is HUGE! Also, Anne-Marie, I am not even going to tell my husband that I am on this website just yet; I can understand the issues you felt with your son. I am just not "there" yet; I don't know how else to describe it. Thank you all again!!

Annie,If you are not telling your husband that you are a member of OCF [and by the way- joining is one of the smartest things you could have done for yourself and him] how are you validating to him that some of the things you are learning and are suggesting to him are, in fact, from very experienced oral cancer patients and caregivers?
For the 1st 4 months of John's diagnosis and tx., he didn't want to learn much about his disease, and I told him that I had joined OCF to become a better caregiver and to have other people to talk to that understood what we were dealing with. Before long I had him reading forum printouts and telling me to ask questions.[He never got on the site because he didn't like computers] Being a member of OCF has always been a source of strength for me, never a sign of weakness. Amy in the Ozarks

Ditto what Amy said - I think in my son's case it wasn't until I gave him print outs to read that he was able to see that the things I was telling him were not just his mother "telling him what to do" but actually very good, knowledgeable, experienced suggestions which truly worked! I think it is possible that some people who are very, very intelligent (my son is one of them), tend to think that if they can't figure out the anwer to something, they think no one else can, which of course isn't true. Finding OCF is a really good thing you did!

I have given this much thought and I believe you are both right. Just as it was a huge revelation to me about David progressing after 6 months and the physical/emotional aspects, I think my husband would get even more out of it because it is coming from a fellow survivor (not just his wife, as you mentioned). I also think that because he is a very private person and has, at least so far, decided not to attend counseling/support groups in person that is forum would let him ask questions/discuss issues more freely. I also think it would help him tremendously because this foundation addresses all aspects of the cancer (physical, as well as emotional, etc.).
Thanks for the ongoing advice; it is so helpful to have the help from others who have been through this. He and I will discuss the forum tomorrow (he is on a driving trip with our son and doesn't get back until then). I want to talk to him in person about the website and maybe even go to it with him, if he wants to.