My husband completed his treatment for a tumor at the base of his tongue over 5 weeks ago and is recovering well physically, but not nearly fast enough for him. At every doctor visit he asks when (and he means the exact date) the mucous and sores in his mouth will go away, his energy return, and when he will get his teeth. Of course he gets the answer that we all know, "everyone is different". Having a scientific background, my husband wants cold hard facts and data. He cannot see that he is improving every day. Friends and family who don't see him often can really see the difference but it is beyond him. Some days he is so depressed, he can't get off of the couch. He has been treated for PTSD and taking anti-depressants for several years so adding more isn't an option. I would do anything to help him.

Now he is facing neck dissection on 12/16 and I am worried that it will send him 2 steps back. Maybe when he hears that no cancer is found, his depression will start to lift. Last week his rad onc told him that the tumor at the base of his tongue was gone. Since Dr.Holland is his favorite of all his docs (mine too) he likes hearing the good news from him.

What my husband would really like is to meet OCF survivors face to face. I have encouraged him to participate in this message board and he has registered.

Meanwhile I feel like I am living on a different planet. I go about my daily life, working, volunteering, cooking, cleaning, etc., but I miss HIM.

I know most caregivers have been through the emotional ups and downs of cancer and its treatment and recovery, but it is new to me. I had no idea how it would change my life. Many of the changes are for the better, like not caring where he puts his dirty socks, but some changes are taking time to get used to. I don't want him to worry about me, but I need to vent to someone, so you all are it. Thanks for listening, Cindy

Hi Cindy,
come and vent all you like, you'll be in good company. My husband has prostate cancer, currently in remmission, and I'm on a monthly check to see what the changes to my tongue and throat are doing! So as you can imagine the ups and downs in our house! September was good my husband fell in to the bottom of the bottle, and I took an overdose of sleeping pills, glad that it's now december! I'm on anti-depressants now, and my husband takes anti-depressants and anti-anxiety drugs, so don't be afraid to ask for help, either for yourself or your husband, even a counsellor, as you say cancer changes everything and sometimes you can be to close to the problem to sort it. Take Care, keep us up to date with whats happening.
God Bless Helen

Hi Cindy,
What a wonderful wife you are! I can only imagine how difficult it is to be "on the side-lines" while your life takes such a wicked twist. I really believe it's extremely important for you to vent all of the feelings you have. Don't feel guilty about saying that these last few months have been lousy. Try to understand also that it's certainly very healthy to feel anger and frustration besides feeling sad; if you're feeling any of that too. It's probably been several months since you've had any time for yourself and in times like these, a caretaker should give themselves back a little of the loving care they give to their loved ones!
I am only four days away from the end of my radiation therapy for cancer of the larynx and I'm already preparing to give myself about six months before maybe I'm close to the old me. My "ENT" just told me last week that I might expect pain for four to six weeks after radiation stopped. One thing I think is good for all of us to remember is that at least we are fortunate to be recovering! There's an old adage, something about "all GOOD things comes to he who waits." Tell your husband total recovery (a good positive thought) will be worth all of this. Best wishes, Lynn

Lynn, Thanks so much for your kind and encouraging words. COngratulations on only 4 more treatments to go! I know how important the countdown is. You are right about not having much time for myself lately, but my daughter gave me a gift certificate for a massage which will I will cash in after my husband's surgery. Your words about being too close to the situation really rang true. I have wonderful support from co-workers, family and friends and must constantly remind myself of that.

Thanks again for your encouragement and celebrate the end of your treatment.
Cindy

Hi Cindy,

Please tell him that I'd be happy to visit face to face but you are going to have to move to Florida or Hawaii or someplace warm and sunny...then give out your address and look out!

He would be more than welcome to e-mail me until you have the move completed.

The hard facts are he is right at the point where things improve faster. My personal experience with fatigue and the mental aspects, is that the best medicine is to get up and get out. Do something, anything, if going back to work is not feasable then volunteer somewhere. Food shelf, church, soup kitchen, anything that involves people contact is best. Sometimes I would do something mindless like splitting firewood or dig a ditch. The point is, the body responds to physical activity in a very good way.

I have become convinced that SAD (Seasonal Affective Disorder) is a real problem for those of us in the northern latitudes. This is a real brain response to the lack of sunlight this time of year. It can be helped by exposure to bright sunlight or very bright indoor light. If you do a Google search you can find lots of information on SAD.

Take care

Cindy, he could always come over to China, a coupld of us regular posters live fairly close to each other. Hav gotten together for breakfast already. But I don't think he'd much like the 14 hour plane ride.

Have to second what Mark said about keeping busy helping a lot. After my second go round with surgery and radiaton I had planned to take about 3 weeks off for recuoup. The week after I finish treatments my boss comes into town and mentions the following monday they're going to check a new factory, could I go to take a look also. Used to do human rights compliance audits of manufacturing here. So, about a week after I'm out of treatments, I'm wandering around factories again, then another "project" wound up working almost full time.

Not for everybody, for sure, still battled bouts of depression, slept at lunch, by the time work was done for the day was so tired would sleep most of the way home. But the feeling that I had responsibilities to others kept me going and motivated, so I ground on.

Bob

Cindy,
Things really do get better. Although I never had a neck dissection ( many here did ), I had a feeding tube for 10 months, an esophageal stricture, and I still don't swallow all that well, but I have gained back my weight and I look and feel fine. I have not been posting here as often as I used to because I just don't think about cancer every five minutes like I used to. In fact now when I meet new people I don't feel compelled to tell them all about my cancer the moment we meet...like I used to.

Tell your husband to keep the faith....

Danny G.

Hi Cindy, I remember when hubby's ENT told us it would be a year before he's start to feel like his old self. Hubby scoffed and thought 3 months, I scoffed and figured 6 (hubby is tough <g>).

Well, it was much closer to the year the doc quoted...it does take time. If you can't get your husband to journalize his progress, try doing if for him. I did a bit of that for hubby (and friends who followed his progress). You can see it on our website, http://www.hncancer.com and follow the links to Our Journey.

As to the caregiver side, boy do I ever empathyze with you! Mike is a doer and that did help - he worked through all his radiation as well as all but the first 3 days of surgery (had his laptop brought to the hospital). But there were days were the vomiting or the fatigue were so bad and he wondered if he would ever taste anything again, he hated the heavy thick mucous...etc.

Hang in there and at least talk to the doctor about trying a change to his anti-depressant meds. That might help as well...

Thanks for your insight Donna. It sounds like your husband had many of the same side effects as mine. Rob is doing better the past few days. We even went to a Christmas party and he has done his Christmas shopping. We are also planning a trip to Italy for a family wedding in April. That is real incentive to work towards eating! Rob's surgery has been postponed until the 30th. He is looking forward to spending the holidays with friends and family. Thanks again for your encouragement, Cindy

You'll find there will be lots of ups & downs. It's hard for us to imagine what they have lost. Some of it returns but it's never the same. Foods that Mike loved no longer taste good or are the things he can't eat (bread, potato, etc). Another frustration is that he can eat something just fine one time and the next he can't. It's dependent upon so many different things and makes it harder to figure out what to eat. He's finally pretty much settled on certain foods and rarely goes outside those bounds. I used to feel very guilty when I was eating something he loved but could no longer eat, have finally gotten over that but have also curbed a lot of my eating (nto a bad thing since I am down over 40# and back into size 6 clothes <g>).

Let him vent when necessary and just don't take it personally. Gently remind him of what he couldn't do before but can now. Then give him a hug and tell him you love him.