Three weeks ago began the journey of cancer. It started with a horrible ear ache and turned into a nightmare. I am the wife and soon to be care-giver of wonderful-young man with tongue cancer. I know that this is not happening physically to me, but the pain that I am feeling is indescribable. I need to hear from some other wives, who have gone or are going through this. I need some support.
Jennie

Hi Jennie and welcome to the forum. 32 is a young age to go through this and it is a nightmare. There is hope however and don't lose sight of that. First you MUST go to a Comprehensive Cancer Center if you are not already. There is a list of them in the resorurces part of the site.

I was a primary caregiver for my
father who had lymphoma so I have walked in thoes shoes as well. It is, in many ways, far more more difficult to be a caregiver than a patient so take good care of yourself. Eat well and get lots of rest. If you are emotionally overwhelmed ask the doctor for some anti-anxiety medications. There are also support groups for caregivers. Start building up a list of people who can assist with driving, respite care, etc. Church groups are very good at those sort of things.

Go to all of the doctor visits and take VERY careful notes. Much information will be given in a short amounbt of time and many decisions will have to be made quickly. It is vital to be your own advocate. You want to know what all of your options are and the risks and benefits of each. We are here to help you in any way we can.

The hospital social worker should be able to help with your benefits and entitlements as far as the financial aspect of it goes. You will be entitled to substantial discounts for gas, electric and lifeline telephone rates. Estate planning and advanced directives are always a good idea at any age.

It is natural to be overwhelmed, especially at the beginning before all of the diagnostic information, testing and treatment planning is finalized. Take a deep breath and keep us informed so we can help.

Jennie:
Gary gives excellent advice.
If you have a church family, rely on them heavily. You and your family will be in our prayers.
Darrell

Jennie,
I was in the position that you now find yourself almost exactly 3 years ago. I think that the beginning of the whole episode was the worst. As time goes by, you just settle into what needs to be done as far as being a good caregiver.

Try to take some time out from what can be an all-consuming job. Take a walk, spend some time with friends...anything you can to regroup your strength. This is such a stressful time for you, as well as your husband, that you need to take care of your own health, too. At one point, my husband's doctors were threatening to start a chart on me and start making me do the weekly weigh-in to track weight loss.

I want to let you know that my husband is now at 3 years post-diagnosis and back to his full energy and enjoying life to the fullest. There can be light at the end of the tunnel.

This forum can be a great resource for you. There are many sympathetic and knowledgeable people on here that can help you as you make your way through this.

Best,
Anita

I cant tell you how thankful I am to have found this forum. The oncologist told us that Erik is the youngest patient that he has ever seen with this form of cancer, he is baffled because, as with many of the tongue cancers on this forum, Erik has no risk factors. We will be having surgery on Wednesday Jan 11th they will be removing about a third of his tongue and having a lymphectomy. Im sure my jargon isnt all correct yet, it has happened so fast. From diagnosis to surgery. He is T3N1M0, I hope that is right. Two weeks after he is released from the hospital, he will start chem and radiation and Eribitux. I am quitting my job, and have had a real peace about this decision, not only will he need me but we also have an 11 year old daughter and 8 year old son, who will need some extra mom time. I guess it is all of the unknowns at this time, I am thankful for this site, it gives me a little insight into what the future holds. I do have a fabulous church family and am leaning on them a great deal right now. I am wondering how difficult is this surgery going to be? Will he be in alot of pain after? How will he get pain meds, if he cant swallow, and what is a peg?

Jennie, I'm so sorry your husband is going through this at such a young age. I don't know where on his tongue the tumor is, but mine was on the oral tongue on the left side and I had about 1/3 of my tongue removed as well as a selective neck dissection. I dreaded the surgery--I was really terrified of it. However, I healed from it unbelievably quickly. Within two weeks I was eating almost everything I had eaten before the surgery and my speech was almost back to perfect again (I am a person who loves to talk and you couldn't stop me just by removing 1/3 of my tongue!)

The radiation and chemo were much much harder though, for me and for most people I think. A PEG is a feeding tube that is inserted directly into the stomach. The operation to have one inserted is a simply one requiring at most an overnight stay after--though he may feel like a mule kicked him in ths stomach forn a few days after that. It will be his lifeline if he can't swallow--both food and meds can go down a PEG although there are other ways to get pain meds too such as patches.

Keep asking questions here, there are so many people who have been through it willing to help.

Nelie

Neli
Your cancer sounds almost exact to Eriks diagnosis. They will be removing 1/3 of his tongue, and neck dissection. His is on his oral tongue and on the left side too. They want to put the peg in while he is in the hospital. Did you have to have a trach when you had your tongue surgery?

Jennie, John had his peg put in during his cancer surgery also. The peg is generally not a big deal. By the time he leaves the hospital the incision shouldn't bother him too much and will just need to be kept very clean. Getting him to use it faithfully may be a battle for you[depending on his personality] so just be firm. He will need the nutrition and hydration. I know how scared you are. The bottom line is YOU are gonna have to be strong for your whole family! It's a really big job. Let us help you through it.

Jennie, A peg is a small plastic appliance, a tube really, surgically inserted into the patient's stomach. The tube is short, it goes straight from the outside of the stomach, through the skin, muscles and stomach wall, into the stomach. It is held in by a small balloon on the inside of the body filled with saline.

The peg tube is a way for those of us with compromised throats to eat. Liquids are poured into the peg, and thereby, directly into the stomach. There are many different liquids that can provide very balanced nutrition through a peg tube. I have lived on mine for nearly three years now. Medicines, water, food, any beverage can be poured directly into the stomach. Its an essential for maintaining strength while in treatment.

You and your husband are in a really scary time right now. It will get better. The fear starts to focus after a while. You get kind of mad and really determined. You start really listening to the docs, paying attention to their advice.

Get more than one doctor advising you. Don't accept their suggestions about treatment without questioning them. Ask them about other options. If they "poo-poo" your questions, get different docs. Get to a cancer center for advice. Talk with docs who have treated THIS type of cancer before - its a little different. There are MANY good ways to treat this type of cancer, so don't 'buy' the first one they offer you. Ask questions constantly.

You, your husband, your children, your support group - you can do this. We here have beaten the beast and we are many. You will prevail. Listen carefully. Ask questions. Fight hard. Be strong. We are with you. Tom

HI JENNIE ,SORRY TO HEAR YOUR BAD NEWS WE HAVE ALL BEEN THERE .PLEASE TAKE CARE YOU NEED YOU HEALTH AND STRENGH TO GO FORWARD THIS ILLNESS IS A BEAST I THINK MOST PEOPLE WOULD AGREE .YOU WILL GET THERE WITH THE HELP OF GOD ASK ALL THE QUESTIONS YOU NEED TO KNOW STAY POSATIVE YOU BOTH WILL BEAT THE BEAST...ALL MY THOUGHTS ARE WITH YOU ...GOD BLESS..MAZ