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 Jean,

I am really sorry you have to go through this. As you now know, cancer does not stop at the patient but permeates the entire circle of family and friends. If you start a list of questions and concerns/issues, it will help you to organize your thoughts. There is much to learn but it will all come together. The important thing is to know how special you are to take on the role you are taking on and how fortunate your sister is to have you. Please do not worry about letting her down, although this is a very natural thing to feel as you embark on such an unknown mission.

Keep an eye on your sister and depression. Often morphine or other opiates will compound the depression and when you toss in steroids, it can be a real mind blaster for many people. I, for example, can not take steroids because I go through some real tough mental roller coaster rides.

I have been in the role of caregiver for almost a year with my mother and I have seen my wife in this role for many months for me and I know it will be very difficult for you. Take time for yourself; do not be afraid or feel guilty for being "selfish" at times. You will need to recharge and do things for yourself to help you so you can do things for your sister.

My wife has several posts, some in the Caregiver section of this forum. She is Uptown Girl and you can feel free to email her with any caregiver type questions. She knows (as do I) that once we go through this, we can offer so much to others to help pave the road for them. Lord knows it is bumpy enough, even on a good day.

Hang in there and ask any questions you need answers to.

Ed

Dear Free2bemi,

I'm sorry you and your family are having to confront this -- it can be particularly difficult if you're trying to come to grips with it from a distance, as you are right now. You're not being selfish -- you're doing what you need to do to help your sister.

She is probably very frustrated not only by the pain but also by the impact on her ability to eat. Please try to find out what advice she is getting about nutrition, because sudden weight loss is a major risk in this situation and it's critical to start combating it early and throughout treatment.

You mentioned that she is in Woodstock, VT -- how far is she going for medical care? Is she being treated at a major cancer center? Is there a "primary" oncologist who is coordinating all aspects of her care at this point? Please try to find out what her doctors have told her thus far about their findings in the lymph nodes, about the extent of radiation that they expect to do, and what medications she has or will have to help her get through this.

Don't be afraid to keep asking questions -- as you continue on this site you will find more and more to help you and your family.

Cathy

She is being treated at the Norris-Cotton Cancer Center at the Dartmouth-Hitchcock Medical Center in Dartmouth, NH. Dr. Gosselin is her Oncologist, and Dr. Underhill is the radiologist that I know of to date. After the removal of the tongue tissue and the finding of the cancer in the lymph nodes they changed her stage from II to II-III. Her last visit, they told her everything looked good that the upcoming radiation and chemo (which she wasn't expecting) was protocol. I am not sure as to the medications for pain, and the condition itself, I know for the depression she is on Celexa and Ativan. I will find out more info and reply again if necessary. Thank you so much for your help. -Betty

Betty Jean has now changed to free2bemi ...

Betty Jean,

You are not being selfish and it is very, very scary when it all begins. If you would like to send me a private message I will be happy to answer any questions you may have as a family member and from my point of view. I saw my mom start to go into depression but now I am happy to report that she is coming around and is almost back to her old self.

Feel free to ask anything you like.
Take Care,
Dani

betty,

sorry about your sister. i know how difficult it is to be going through this from a distance. i'm in a similar situation. my sister lives in los angeles and i'm in toronto. although i go there from time to time to be the caregiver and temporarily relieve others, my life situation doesn't allow me to be there for long periods at a time. i find that frustrating. but i've found that i can play an important and necessary role from this distance. i have more time than everybody else who's involved in the day-to-day caregiving to find information, to read ahead, think about and understand potential scenarios, and generally act as a resource person for my family. not surprisingly, the distance allows me to look at the bigger picture as i'm not totally overwhelmed with the immediate circumstances. sometimes i'm off, but more often my input from here seems to be helpful. from your description, you're the younger person in the family, and given your presence on this board, clearly the more resourceful person. i think it is important that you collect as much precise information as possible about her condition and treatment. you may be overwhelmed initially, as i found myself to be, but soon you'll find yourself in a better position to navigate thruogh difficult decisions and confusing circumstances. as others have suggested, it would probably be helpful also to draw up a list of short-term and long-term questions that you have at this point and pitch them to your sister's doctors and to this board.

it is great that you're going to spend time with your sister, perhaps particularly because you've been estranged for a while. the rekindling of love will be positive for all of you, though i'm sure it'll be a bumpy road. so, i also want to echo what ed and cathy have already said: think about ways in which you can take care of yourself, and perhaps think about what mechanisms you can put in place to give yourself a break when you're with your sister. be proactive in this regard because once you're there you may not get the chance to figure things out. family dynamics can make caregiving an even more complex work. i've learned this from my own experience.

feelings of anxiety, fear, confusion, frustration, etc. are normal. what helped me sort through this stuff was reading through stuff and connecting with people on this board, but also connecting with a cancer support network in my city <http://wellspring.ca/home.html> i found it very helpful to talk through things to volunteer counsellors who themselves have first-hand experience as survivors and/or caregivers. perhaps you would benefit from connecting to a similar network if there is one where you are. none of us are ever prepared for this situation, and going from nothing to emergency response is a trip at lightening speed. you're doing the best thing you can for your sister by connecting with people who know the road. i hope you may take solace in that.

good thoughts, healing and peace.

gita

Thank you all. I now know my sleepless nights looking for support sights has been well worth it. I feel like I'm home here, somehow. The estrangement was not necessessarily with this sister, and yes I am the youngest of three, but with my entire family. Just needed a timeout. However, this particular sister and I are very able to forgive and forget and realize that now is not the time for trivial dysfunction. We have greeted each other long distance now, through this very bad diagnosis, with many "I love you's." Her and I have moved on, and I am grateful that although this is an awful situation, we are together as a family again for the most part. Unfortunately for my sister who is ill, her only biological family, lives away from Vermont. Myself in Wisconsin, my parents and other sister in Tennessee. She has her husband's family in Vermont, but it is not the same. She need's HER family. She has had help so far from her long time friends in the area, and at her request did not want any of us to fly out for her initial surgery and tongue reconstruction and first round of radiation. I think she was under the false impression that things would improve once that was done. No matter how well her doctors informed us, none of us expected the depth of this illness. I am not a wealthy person, but had vacation time saved up and will leave my own family for the first visit to Vermont for two weeks. I will take personal leave if I must and endure the financial burden, in the future if she needs more care, as I suspect she will. My parents and other sister are taking turns for the time being as she has now agreed for all of us to come. We will each start with two week intervals, and see where we are after the chemo and radiation rounds around mid-August. She talks on the phone to me. She sounds like she has cotton in her mouth. She can barely swirl a teaspoon of water in her mouth and is getting all her nourishment through the feeding tube. She seems better since they put her on the Ativan, and hasn't mentioned suicidal thoughts for a few days now. I want to thank all of you. This site is phenomonal. I can see I will be on here quite a bit, and am getting my laptop all ready to take to the woods of Vermont so that I can use the support group when I have moments to myself while I am caring for her after July 6th. Thank you so much .... - Betty