Hello, I am here as my 51 year old sister had surgery to remove and reconstruct 3/4 of her tongue, three weeks ago. She also received radiation in the hospital. Some in the lymph nodes. To you all, I'm sure I sound simple. I am just now realizing what we are into as a family. I've just committed to going to Woodstock, VT from Pewaukee, WI to care for my sister whom I have been estranged from for over a year, while she receives both radiation and chemo. I am 46 next week. Terrified of seeing my sister like this. Afraid I will let her down. I need to understand more what to expect, the worst, the best. I need to know how to help her. She talks all the time. Like cotton in her mouth. She gets upset and talks fast. She can't hardly swallow a thing. Her tongue is very swollen. She is getting just a little bit of water down, once a day. She had suicidal thoughts, but has now gotten some more medication for this. She starts her rounds of radiation and chemo on 6/22. I arrive on 7/3. My elderly parents will be going there from Ooltewah, GA to take the first two weeks of treatment. My sister is married to a man 30 years her senion, 81. He is still the town constable in Woodstock, still caries his gun ! That worries us ! But, he is not of much help. This has crumbled him. She can't worry about him. So... I haven't gotten to read your stories completely yet, bits and pieces. I apologize if I am being selfish and only thinking and talking about my situation. This came on so fast, we were so unprepared, and now we are in URGENT mode. I needed help. So I'm here ... I will appreciate any word or thought. Thank you. -Betty

Betty: You came to the right place. No one here will think you are selfish only thinking of yourself. With this disease, we all think of ourselves only at times because it is such a nasty disease. Don't worry about it. And you don't sound simple, no one here knew much about cancer until we got up close and personal with it either. Then you go into study mode and find out about it. That's one of the reasons for this website, to educate, so go ahead and review the postings here. My cancer is different than your sisters, but my treatment was similar. Radiation, chemo, surgery. Radiation is very difficult. If your sister is already having trouble with eating, she may want to get a feeding tube, known as a peg, so she can consume liquids and keep her weight up. During radiation, she will probably have more and more problems with eating. I eventually could not even swallow my own spit, what little I had left. All of us react differently to treatment, but generally, what I found at least, was that chemo was the easiest, surgery was middle and radiation was the worst. It sounds like you also need to get her to a cancer center with a full team to address her mental state, to help with her husbands feelings of being deserted, with the feelings you and your parents are going to have and all the other things coming up. There is so much more that you will have to face. I'm sure others will also respond to you, people who have had tongue issues. Just hang in there, do all you can, stay calm, worrying never helped anybody and keep reading current and past postings here because the real situation is dealt with every day. Meanwhile, you and your sister and the rest of the family will be in my prayers.

Hi Betty,
The first thing I would do is talk to the hospital social worker or local American Cancer Society office and find a caregivers support group for yourself. Treatment is very hard and caregiving even harder. She may lash out at you just because you the the closest person nearby so if you are thin-skinned you may have problems dealing with this. I was pretty tough on my loving wife/caregiver during the worst part of my treatment. I was pissed off about everything.
Seeing your own immortality as mirrored by your sister is tough also - I had some friends who just couldn't cope with it. That's why counseling and a support group are invaluable.

Suicidal thoughts and depression are normal byproducts of this disease. If she starts talking about a method of suicide or disposition of her assets (like who gets what), seek immediate help from suicide prevention. It is good that she has gotten medication for depression - most of us need it and it should help a lot.

You mentioned she hasn't started radiation yet? Many consider the surgery to be the easy part. Does she have a PEG tube?

Your willingness to walk along side her tells me that you won't let her down. The medical team has the primary responsibility for her care so don't be over-responsible either.

If you are going to be a caregiver then go to the appointments with her and take notes whenever possible. We are always here to help with any other questions you may have.

The medical team you will be interfacing with will typically have an:

-Oncologist (chemo and usually the primary care doctor)- Usually the oncologist will manage and coordinate all of the prescriptions also, such as pain medications, anti-depression medications, constipation meds, etc.
-Radiation Oncologist - plans and administers radiation therapy
-Head and Neck surgeon (sometimes ENT) will have primary responsibility for surgical aspects and post treatment recurrence surveillance or followup.
-Nutritionist - deals with dietary issues
-Oncology advice nurse- for dealing with day-to-day issues.

There will be many others involved but these are the important ones.

My wife gave me a book called "Living Well With Cancer" by Katen Moore and that helped a lot to take the mystery out of it. You can order it through the link below or choose from other books that are on the OCF booklist http://www.oralcancerfoundation.org/products/books.htm

There isn't much more to say than what Gary told you. He is very educated in this diaease and the treatment options. I can offer your sister and you my support. I to live in Wisconsin. Remember to tell your sister to measure her progress in weeks not days. I foiund this to be quite true. It does get better.

When you get there get her on the computer so she can read about others that have traveled the path ahead of her. I look forward to her input as each person reacts differentely to the same treatment. Hopefully she will do well.

Best wishes, Danny Boy!!!

Hey Betty,
The PEG tube was a lifesaver for my husband, Dan. He just got it out today...hasn't used it for 2 weeks, but used it for almost 5 months and couldn't have gotton thru w/o it. After about 3 weeks of chemo/rad he couldn't eat or drink. He also couldn't talk for about 6 weeks. He had medium chemo doses, but max radiation. It was a hard road for Dan and me as the caregiver. I had to go get some depression meds (Xanax, Ambien for sleep) to make it thru. We have a great support system thru our Bible study and church, which helped us so much. Your family will be in my prayers. Take care and get yourself some meds...it sure helped me in the role of caregiver!

Deb

Thank you all. Yes she does have the PEG tube and has had one round of radiation when she had her tongue surgery. Now 4 weeks after surgery she will have a 2nd round of radiation and Cysplatin chemo, this begins 6/22. She has been trying to practice swalling but complains the new reconstructed tongue is too fat and she really struggles with swallowing anything. Seems to be emotionally better since getting the Ativan. And yes Debbie, I will talk to my own physician about anxiety meds before I make the trip out to Vermont for myself. Dan, she is trying to get on the computer more, and she is aware of this site. My mother actually told me about it. She is a little fearful of reading about the Cysplatin as she is afraid it will scare her and I think she is taking a reprieve from the surgery of pure fear. She thought the first round of radiation was horrible. I will encourage her to get on the board and post if she is able. Thank you all. -Betty

Gary, thank you so much for the link to the book list. It will be a great help to read on the flight out to Vermont and during the quiet times when she is sleeping. I feel now that our biggest friend in this is knowledge, and I am trying to soak up as much as I can. Your outline of the caregivers for her is pretty much in place through the Norris-Cotton Cancer Center in Dartmouth where she has been treated. I will become more familiar with them when I arrive. Also she does have a visiting nurse come daily to her home in Vermont. I will be going with her to all her appointments, as will my parents the first two weeks of her treatment. I arrive after them. I need to know what to expect mid treatment of radiation and chemo. What to do to help her get through. What is comforting ? What is annoying (probobly everything !)?? And it seems no one can really say what to expect, as it changes from moment to moment, patient to patient. I appreciate you all taking the time. -Betty

Betty,

You are truly an angel to be taking on the role you are. Your sister is so fortunate to have you by her side and all the love around her. You be sure and take some time for yourself every now and then. It will be very tough on you, too, and periodic recharges are necessary so you can be all you want to be for your dear sister. I am so sorry all of you have to go through such a rough time. As you know, cancer affects the entire cirlce of family and friends.

It sounds like you have a lot to ingest right now and an enormous amount of knowledge to get you started. If there is anything you need an answer to, there are tremendous resources available for you here. If you just need someone to lean on from time to time, we are all here for you!

May God continue to bless you and your family.

Ed