It has been six months since Kenny's last treatments. The initial PET & CT Scan's indicates and 'all clear'. The ENT is scoping, looking and feeling every month. Kenny is eating again (he even has much of his taste back!) and is using his J-Tube only at night now. Now ... when do things get back to 'normal'? I find myself constantly waiting for the other shoe to drop. I realize this is perfectly normal - but I do feel like I am not being a very good cheerleader right now. Guess I'm just afraid that there are a few cells still there, lingering - waiting to pop up and create total chaos again. I was so very good at taking things literally one day at a time. Now I'm starting to think about tomorrow and I worry.
Thanks for letting me vent.

Carol

Hi Carol,

I'm 1 year, 3 months and 7 days removed from treatment. 1, 1 month and 13 days removed from my neck disection. Funny how we can remember those dates so clearly. I am now about 90%. The last 25% of healing takes the longest. My dry mouth is about gone, I no longer wake up at night with my mouth frozen shut. Taste has returned, etc. I will be seeing my ENT for the next 4 years. one year down, 4 to go. It takes a while, and the best thing you can do is continue to celibrate Kenny's successes and give him support as he needs it. The recovery process is slow. Our treatment regimin was quite rigorous.

Steve Daib

Carol,
I hate to tell you this, but it will never be normal again. The sooner you accept that the sooner you will find your "new normal". I spent alot of time chasing after my "old normal" so hope to avoid you doing the same. Your life has changed, that is what cancer does. We can be cancer free, but never free of cancer. It's with us the rest of our lives. Accepting that allows us to move on. My life is INCREDIBLE now, I wouldn't change a thing.
Take care,
Minnie

Carol,

I remember asking the same thing about my mom and I can remember many people responding that she will never be the same but things do gradually get better and you stop thinking and worrying about cancer so much and your life will get back to a new normal. My mom still has to rinse her mouth after every meal and she still has some hoarseness when she speaks. Her mouth will never feel the same but she can have an occasional glass of wine and she is even able to tolerate somewhat spicy food. She is doing so well that now everytime I talk to her I don't ask her how her mouth is and we've moved on from that torturous part of our life. It honestly took my mom almost a year and half to be bascially pain free and to gain back some weight and look like her old self again.

I am happy to say she has reached her two years post radiation this month and things are great.

Things will improve with time....

Take Care,
Hugs,
Dani

Carol, I look at things differently. My life has returned completely to normal, nothing new about it. I enjoy doing everything I did before I was diagnosed. I have had some rather extensive dental work, but I have had dental work all my life, so that was not a surprise. I am enough of an optimist that I consider myself cured. A recent head to toe check found nothing wrong, so I plan to live to be a very old lady. I had surgery for a stage IV tumor, followed by rad and chemo, so I have a couple of scars, but they most certainly do not slow me down. I look back on my time in treatment as a detour, as an education certainly, and as the opportunity to meet new people, many of whom are still friends. I was not a patient patient, and shed that label as soon as I could. Neither am I a victim. I am just me, living my regular, ordinary life. I have had chickenpox, measles, cancer, mumps, and flu. Were it not for my participation in this forum, and my visits to the ENT, I probably would not think about the cancer at all. It is very possible to get one's life back, and I am proof.

Please consider this: We can spend time worrying about a recurrence, which may never come, in which case we have wasted time and emotion on nothing. Alternatly, we can have the best time we can, and if a recurrence happens, we will at least have lived our lives fully to that point.

If I have learned anything, it is that it is pointless to waste time thinking, much less worrying about, things over which I have no control.

There is a lot to be said for the idea of self-fulfilling prophecy -- if one believes things will get better, they just might. While we cannot change some circumstances, we can most certainly change our perception of them. Mind games? Perhaps. But happy trumps worry every time.

Hang in there. It WILL get easier.

People seem to respond to treatment, and recover from treatment, differently. I know when Barry was first diagnosed his major concern was that, after treatment he would be debilitated and not able to do the things he loved, such as travelling all over the world birdwatching. (Not, which I thought interesting, that he was going to die of cancer.) Certainly a lot of the papers we read and a lot of the patient stories we heard were not very encouraging. However he went to a top CCC and had excellent, and very encouraging and engaged doctors, and although the treatment was very difficult, he got through it better than he (or I) had expected.

Last night he was speaking to another patient who is just starting treatment and told him that, 5 months out he now feels almost back to normal (I think he told the fellow he "feels 95%") except he needs to regain about 12 pounds weight and still has a problem eating spicy or very dry, sharp foods. I know when we arranged our January trip to western Mexico, a friend of mine came along as we anticipated Barry would spend a lot of time resting each day and she and I could keep each other company. Well, he never spent a minute resting and had more energy than my friend!

Of course he still is well aware that, medically, he is not out of the woods and still need to be monitored carefully in the future. But he has an optimistic outlook and like Joanna, hopes that this is just a "detour" in the road and that he can continue on with his life. He is not naive about the risk of recurrance but is not obsessing about it, either. I know we read one paper that found optimistic HNC patients did twice as well as pessimistic patients so there is apparently something to this...!

Best luck,
Gail

Joanna...i simply loved your post.I felt i had a positive attitude but it seems i still need to do some work on it.I do think about recurrance but probably just once in a while & not as often as i used to.

carol....as for the normal part,someone mentioned here as normal being boring & you never know the new normal might be better that the old normal!I would never have found the courage to pursue a hobby of mine as a profession before cancer....i probably would have spent my entire working life doing something i didn't really enjoy.....i think i like my new normal better...

I echo everything Joanna said. The last thing I am going to do is waste time and energy worrying about another reoccurence. I've got 'places to go and things to do' and like Barry, my concern on both my cancers, was 'could I still travel'. If I learned anything from this experience, it was 'slow down and take time to smell the roses'. When spring arrived that first year, everything seemed so much greener, smelled so much sweeter, air nwas so much fresher, it is hard to explain. My husband just called about my Mom's income tax, and said 'there's a robin in the birdbath, a woodpecker on the suet and the crocuses are in bloom', I doubt he would have bothered to mention that 9 years ago. I think if we try, we all gain something from this detour.

Take care,
Eileen

Carol,

I can agree with several of the comments made above. One of the things the cancer experience did for me was to serve as a brutal reminder of the importance of savoring every day. As I looked back at my "old normal", I realized there were parts of it that weren't all that great (like being a slave to my job for far too many hours a week). The new normal for me has developed into a combination of a more realistic workload, travel to great places, volunteer work for several organizations, singing regularly in a choir, learning to play the pipe organ, gardening and growing orchids as a hobby -- and, like Eileen, noticing the birds in the back yard. If someone offered me a chance to have the "old normal" back, I wouldn't take it.

Cathy

The above posts just gave me a little kick where I needed it Thanks for sharing the great attitudes. Amy

I agree with Amy, the above posts have certainly given me food for thought. Just recently (last couple of months)I have been really down and depressed the doctor has even suggested antidepressents which I'm afraid I refused so started taking St John's Wort which have helped a little but still couldn't shake the feeling of sadness and after reading this thread I have just realised I have been mourning for my old "normal" life before cancer. But even though most of the posts in this thread are encouraging it's still difficult to make your mind get back on track and adjust to what is now the "new normal". Linda

You are all so terrific! I have been mourning our past lives -- just got an empty nest and then bam, look what we hit head on. I have to admit I've been having a bit of a pity-party. I've given myself a good kick in the pants and am determined to have a more positive attitude. I know that cancer has changed both me and Kenny. We are certainly different people now. I believe we are both more humble, patient and kinder today that a year ago. I hope I have the opportunity to help others as much as you guys have helped me.
Thanks!
Carol

I never believed that life would be normal after Dennis' treatment. He had stage III tonsillar, had the upper right lobe of his lung removed and drank like a fish. Had no hope.
He changed. He stopped drinking. Completely recovered from chemo and rad, and now I sometimes am amazed that I no longer question a difference in our diets. It used to be nothing but chocolate shakes with as much protein as I could cram into a serving. Three times a day.....begging him to just take a little. Now, he is eating anything that he wants. Prayers are answered! (Don't give a flying rip who your higher up is....he knows, and he hears, if you mean it!)
I'm the one who has to back up sometimes and wonder. It was soooooooooo f...ing hard for so long, and now we're supposed to act normal again?
It's always a feeling you have in the back of your mind....'what if'...'what now'....but life has always been that way, hasn't it? We were just to busy to notice.
I'm trying to thank God (hope that's ok to say now...???? ) everyday that I'm able to realize the gift we've been given.
An ordinary.....boring.....BEAUTIFUL....Life..
Mandi

Mandi, thank you for your honest, refreshing post...so glad things are going well for you and Dennis....Take Care and God Bless....Love, Carol

Carol, I was diagnosed 4 years ago come this May 10th. I have to tell you that I honestly believed my life would be the same after surgery and radiation, of course it was not. Getting oral cancer has definitely had a huge affect on me. It changed my outward appearance, I still have some speech issues due to dry mouth, neck stiffness, dental issues, etc. But cancer affects so many people, young and old, I am grateful to be a survivor of this dreaded disease....Happy to be here...Love, Carol

An ordinary, boring and BEAUTIful life - ain't that the truth! I've only been going to work a few hours here and there when I can manage - I told my coworkers the other day that I will never again complain about the daily grind of going to work everyday. If only things were that simple again. I hope they will be. I told my daughter once that she should pray and give thanks every morning when she gets in the shower that she has been blessed with the ability and the clean water to shower with. She laughed, but she got the point. As they say, little things mean a lot!
Michele

Isn't that the truth! It's funny this is coming up now - I was just telling my sister the other day to be thankful and happy about her routine when she was saying how boring things are. I can't wait until my husband and I can get back to our routine. I will never complain about that again! It will be soooo wonderful!

My children attend a private Christian school and we are members of the church that is affiliated with the school. Close community to say the least. One of our mothers, Jeanne, died last May of ovarian cancer. She was in her mid 40's and she and her husband have 4 beautiful children, 2 boys and 2 girls. She died one month before her oldest, a son, graduated. Her youngest is in my 9th grade daughters class. She fought this cancer for 5 years, opening her house to the kids when she was home and healthy for study nights or just to have fun. Even when she got to sick to go upstairs and they brought a hospital bed in and put it in the living room, she still had the kids over, and they would simply sit around the bed or even on it with her. This was a loved woman who also lost her mother when she was 17, to the same ovarian cancer. She knew how to help her children lose her, as she had been through it herself.
One time that she was in the hospital, she quietly said that she would give anything to be at home, on her hands and knees, washing her kitchen floor while the kids did their thing and her husband watched TV. That has always stuck with me. I have never, ever bitched about washing my floors again...........and I do it on my knees, throwing a hello Jeannes way each time.

Love, with a healthy dose of kindness, consideration, compasion and appreciation for what we have in the present and what we have been given in the past will see us through to the end. Amy