Jennie,

You've gotten lots of good advice above. Please remember you'll always get plenty of support and suggestions here, so feel free to come back any time with your concerns.

There can be a range of reactions to the treatment for tongue cancer, so it's hard to predict how your husband will respond. However, I think most of us who had both surgery and radiation will tell you that the surgery was a piece of cake compared with radiation (or chemo with radiation). I was 39 when I was diagnosed, and my symptoms had been virtually ignored by two doctors -- even though I made a point of asking about them and they were very clearly visible -- because they said I didn't fit the "risk profile" for oral cancer. I had a truly miserable time with radiation, like many others here, but over time my mouth has healed remarkably well. It's important to remember that there is usually an extended recovery time from radiation (one rule of thumb is that it takes a month of recovery for each week of radiation), so be prepared.

I don't know if you've had a chance to look elsewhere on the OCF site (beyond this forum), but if you haven't, please be sure to check it out. There's a ton of very useful information there and the news section is updated continuously.

Cathy

Jennie- I'm sorry to hear you have become one of us (caregivers of people with oral cancer) but I'm really glad you found the OCF so quickly. I can't tell you how valuable it was, and continues to be, when we were going through the treatment stages. Everyone here has given you such wonderful advise. The only additional thing I can say is to ALWAYS feel free to "vent" here. This can be very overwhelming and often everyone is focused on the patient, you get pushed to the sidelines. YOU are just as important, your kids know that, and you will have just as many ups and downs emotionally and physically as your husband will. I remember most times I felt like I was being petty complaining about what I had to do and go through...your problems and fears are just as important! So...if you feel like you can't complain or vent to anyone else...do it here! We all care, will NEVER judge and we have all been there. I must tell you that I had to go on Lexapro during this entire ordeal...there is no shame in getting the help you need for yourself.

One last note. During the radiation/chemo treatments my husband's sense of smell was very sensative. He couldn't handle having me cook anything at the house...it either made him nauseous or made him sad cause he couldn't eat anything except via his PEG. So, you might want to start enlisting your family, friends and church members to make meals for your family. It will take a great burden off you and really help your husband.

Keep us updated. You are in my prayers.

Lorie

Jennie,

In answer to your question, I did not have to have a trach, but before surgery I was warned that I might wake up with one, it really depended on how swollen my neck got, how far back they went with the tongue tumor, and who knows what else. I gues I just got lucky about that (there were plenty of other things I didn't get lucky about, I'd forgotten that was one where I did so thanks for the reminder).

I was stage II so I did not know immediately after the surgery, at least not until the pathology report came back and actually not until I got a second openion form a CCC, that I would definitely have to have radiation and chemo, So I had to go back to the hospital for the PEG operation. Much better to get it done all at once though. He should be totally healed from both of those by the time he starts rad and chemo.

This is a long ordeal of a treatment, there is no question. So come here and vent whenever you need to adn if he feels up to it, encourage him to come and vent too. There's such reassurance in knowing that whatever difficult thing you are facing, there's probably someone here who's been through it too.

Nelie

Jennie,

When I had my surgery to remove 25 percent of my tongue, I knew from my biopsy that it would swell up tremendously. The doctor kept the vent in from surgery and kept me under in the ICU until the swelling went down, no trach needed. I think I was in ICU for 2 days, 1 because of the swelling, the 2nd because there were no beds close enough to the nursing station to satisfy my doctor. I went home on day 6 with the drain still in from my neck dissection of levels I, II and III on the right. Tumor was under the right side of my oral tongue.

Best of luck to Erik, keep us informed!

Sincerely,
Lisa

Jennie,
I don't know what kind of job you have, but did you consider taking family leave rather than quitting? Federal law allows up to 12 weeks of unpaid family leave to take care of a family member. Just a thought.

Take care,
Eileen

I am amazed with all of you who are responding to my original post. I cant even begin to tell all of you how thankful I am for this forum. It is really helping me to get the "correct" information, and you are all giving me some of what the future holds. The scariest part for me is the unknowns, what our life is going to be like with cancer, and what treatments are going to look and feel like. It is so nice to know that I can come here in my lonely and happy moments and share with all of you, and really have someone who understands exactly! I know so many men who have been in my spot, but never another woman, and to have this support is wonderful. I know I will have more questions, thank you for being there, hopefully I will have the insight for someone else down the line.
Eriks surgery is tomorrow morning, and so we are preparing all his favorites tonight!!! (minus the tomato sauces)

Jennie, you and Erik are in my thoughts and prayers. Love, Carol

Jennie,

I'll be thinking about you and your husband. Take it one step at a time. You'll make it through. You will need to take care of yourself so that you can take care of your husband.

As far as the trach. I had to have one. If your husband has to have one, tell him that it isn't as bad as it looks. After a few days my ENT gave me a valve for the trach that enabled me to talk with my family. Sounded strange but it did the job.

As for the amount of pain, it probably depends on each individual. I never really did feel much pain. I had a morphine pump when I was in ICU, and for a few days after I was moved to a regular room. Then I was weened off of it. All pain meds will more than likely be given intravenously.

Start planning now for your husbands home care. My wife worked with the hospital's social worker to set up a visiting nurse and speech therapist to visit our house. You'll probably see a speech therapist while your husband is still in the hospital.

It warrants repeating. Take care of yourself. And those two kids. I'm married and have two kids also. My wife and my kids are a big reason why I fought so hard and continue fighting. Your husband will need you throughout this ordeal.

We'll be thinking about you and your husband. Good luck tomorrow.

John

If you are taking some time off you may qualify for an hourly pay (within limits) through IHSS (In Home Supportive Services). They actually pay for stuff like doing laundry, shopping, errands, etc. and spouses are eligible. In CA, it is administered through the county welfare system. The American Cancer Society will also pay a mileage fee if your round trip is over 60 miles to and from the treatment center.

He's probably too young for SSDI but he might qualify for SDI. Check the SSI website for qualifications/eligibility and documentation requirements. SSDI and SDI are retroactive from the date of disability as a rule.

Ask for copies of all medical records and lab reports. You don't need actual scans but the scan reports are very helpful. You will also need a certified copy of his birth certificate for any federal claims.

I was disabled for almost 2 years and was in very good health going into it.

It's good that they are hitting this aggressively as his young age actually works against him a little bit.

It is the morning of surgery, and I am just ready to get the show on the road!! For those who were thinking about his disability status, Erik works for a medical device company, and they are being more than great about all of this, he has wonderful benefits, and plus co workers are pooling vacation time for him. I will be meeting a social worker today so I will ask about the stay at home caregiver benefits here in Washington.
Thank you for your prayers and support