My husband was dx'd about 2 months ago with cancer of the base of tongue (stage III, spread to one lymph node). Nelie helped me find my way here (thank you Nelie!) We're 4 1/2 weeks into IMRT (no chemo) and I'm looking forward to meeting other caregivers here.

He was on Amifostine for the first 3 weeks of RT, but had to stop because of nausea/vomiting - They're putting a feeding tube in tomorrow and he SO misses eating - it breaks my heart to see him long to eat something real (besides cans of nutritional drinks). He's still able to swallow, but says everything he chews has a terrible taste. Sadly, cooking together was one of our favorite activites - we're actually building
a house with our dream gourmet kitchen (of course started before we learned of the cancer).

We're both 45 - and the change in our lives (and the changes I'm anticipating down the road) positively overwhelm me. He was an active, vibrant man (and a non-smoker) and now he says "I feel like an old man" (taking so many drugs, many to combat the side effects of the drugs he's taking).

I'm hopeful he'll survive this cancer - but i'm overwhelmed with what's ahead...

Glad I found my way here -
Debra

Hello Debra...and welcome from another Texan. Things aren't as grim as they seem. I was 54 when I was diagnosed with Stage IV, base of tongue, and wasn't fortunate enough to have IMRT, so I had a pretty tough recovery and lived on liquids alone for quite a long time. However, now, four years later, I am as active as ever...just got back from working out at the health club and play golf too much in my wife's opinion!...and I can eat just about anything. Most of my sense of taste has returned and I enjoy eating as much as ever. Your husband is relatively young, IMRT is less damaging than regular radiation, and although it won't be easy for a while...I am sure that one day you will be cooking delicious meals again in your gourmet kitchen.

Best of luck and Hookem!

Danny G.

Debra,

Welcome -- I'm glad you found this site. I know this phase of treatment can seem really tough, but as Danny said, you shouldn't assume that the way your husband feels now is a permanent condition.

I was 39 and a non-smoker when I was diagnosed 17 years ago, and had surgery followed by conventional radiation, as IMRT wasn't around then. While I went for quite some time waiting to get my taste buds back (and dealing with dry mouth issues), things have improved substantially over time. Much of my salivary flow has come back, my taste buds completely returned, and I enjoy cooking (and eating!) as much as ever.

Just try to take this one day at a time and don't let yourself worry about what's way down the road. Be sure he's continuing to get the daily nutrition and hydration he needs, as well as pain management, to help him recover as quickly as possible.

Cathy

Debra,
We have a lot in common. My husband is 45 and was diagnosed in May with cancer in his right tonsil. After a tonsillectomy he is 4 1/2 weeks into radiation (today is treatment 24 of 33) and halfway through 10 weeks of chemo. We found that the radiation effects really "hit" about 3 weeks in. That's when Tom got the PEG and it has made a HUGE difference. Before the PEG, it hurt him to swallow his own sticky spit and even a sip of water would bring tears to his eyes. He was tired and couldn't even concentrate long enough to watch TV. Post-PEG, he's like a new man. It's amazing what hydration and nutrition can do. He still tires very easily but he's feeling 100% better. I'm sure you'll see a big change now that he has his new friend, PEG at his side! Be sure to ask about what meds he can and can't crush to take through his PEG. And, ask what meds are available in liquid form. Lots of the folks here have PEG experience.

Tom misses eating too...he's 6'3" and started out at 280; now 260. And I miss cooking. The good thing is I've been eating a lot more salad because it's not worth cooking anything elaborate for just me and I don't like to eat in front of him. I'll even flip the channel when a food ad comes on TV. Food Network is out of the question!

At our first consultation, our onco nurse gave him great advice: don't try eating any of your favorite foods during treatment because the taste change could turn you off them forever. We dream of all the great food and travel we'll enjoy next year when all this treatment is behind us. Hang in there and visit this site often. There are many, many good people here willing to listen and offer advice when you need it.

One day at a time,
Joyce

No doubt about it you have a bit of a rough road ahead but don`t despair.
We are 3 years out of treatment and Pete is doing really well. Our life actually seems better now, because we have faught the beast and won!

As a caretaker you must remember to look after yourself, go get a massage , get your hair done, time by yourself is essential.
Don`t be shy and take all help offered, you will need it.

Welcome to the forum and take care .
Marica

Debra, just want to "second" Marica's advice to remember to take care of yourself too.That is really important advice! John and I began our relationship in the kitchen.[we own and operate a Kitchen and Bath Design\Install business] We both love to cook and eat. He has been on a peg for almost 12 months, cannot swallow at all, but on good days he COOKS for me! The rest of the time I cook for kids and grandkids. One of the hardest adjustments I have had to make during this time has been the loss of our playing in the kitchen together and enjoying the fruits of our labors. As a caregiver, you will find many things to adjust to over the next months- so allow yourself to be "overwhelmed" for about a month and THEN just remember that when the going gets tough-the tough get going. Altho this is a shopworn phrase, truer words were never spoken about the role of a caregiver in a cancer battle. Amy

Hello Debra and Welcome!
My husband is three years out from treatment and doing very well. He relies almost completely on his PEG, but this has allowed him to regain lost weight and more. Like Joyce, I eat a lot of salads--cooking is just not that interesting anymore. We've found lots of other things to do together, including working on the OCF book in progress.

Encourage him to keep swallowing and doing his jaw exercises, though difficult, will be worth it in the long run.

Have you found the Caretaker Forum on this site yet? Lots of caring people here, as everywhere on the forum, and helpful ideas specific to your role. I'm glad you're here.
Hang in there,
Charlotte