Hello everyone...my mom has recently been diagnosed with oral cancer with the primary tumor on the tongue. She has an inflammatory skin disease called lichen planus on her tongue (for the last 10 years or so) and was a former smoker (quit 8 years ago). In September/October she noticed a lump on her tongue in addition to the lichen planus...fast forward to late December and the tumor is cancer. They schedule surgery but they don't think it is in the lymph nodes. She has the surgery...they remove the tumor, lymph nodes, and salivary glands. The lymph nodes come back positive and now she is getting ready for combination radiation and chemo treatment (I think this is stage 4). My mom is 59 years old. She lives in Seattle and her doctors are at University of Washington. My sister and I live in Virginia but we are planning to come out to help her. I don't know why I am inlcuding this much info...I guess I feel the need to share among people who understand. But also I want to know what the best things we can do for her when we come out during her treatment. Does that make sense? Sorry for rambling.

She's going to feel very sick, so be prepared for that. At the same time, she'll need to taking in enough nourishment to keep her weight up and support her body's needs for the healing process to recover from the surgeries, the chemo and the radiation damages. It's also very important that she take in lots of water.

Likely, you'll need to transport her to/from treatment, do her shopping, prepare her food and help her ingest it (probably a PEG tube ), monitor her medications, etc. If you want to do more than the usual liquid foods (Boost, Ensure, generic stuf from Safeway, WalMart, etc.), a blender or food processor is a must.

If using a PEG, it's important to keep swallowing as much as possible so that the swallowing process does not become lost. Personally, I kept swallowing water and my meds, using the PEG only for the liquid food.

It would help tremendously if you can speak with her Doc and the treatment staff (nurses, dieticians, etc.), both to find out what she needs and to report her problems. There are plenty of pain and nausea medications available for the asking and the trick is to take them before they are needed so as to stay ahead of the curve.

One thing to keep in mind is that when the last radiation treatment is over, the worst has not yet come -- The effects keep on working on the body, usually peaking a couple of weeks past the last treatment.

If you can arrange it, it would probably be better if you and your sister can stagger your times with her, with someoverlap.

There's a lot of information located on the main homepage (link at the bottom of this Forum page) through the menus and even more through the Search feature and by reading there, you can learn a lot about the processes.

Also visit the Caregiver Forum and read some back topics. There are plenty of folks here who have been down this road before you and are willing help you with this.

Jen,

Here's a timely post by davidcpa to another thread in the Coping Forum:

QUOTE
My wife and employees and friends took turns driving me when I needed it but that was only about 4 weeks of trips. Sometimes I admit that I drove myself when I shouldn't but that's just me. My wife was able to work just about normal but owning her own business helped when I would call and say HELP. We only live 1 mile from our businesses and that helped as well. Believe me most of the time when he will feel his worse, he won't want to be around anybody and will sleep a lot.

The most important things you can do for him would be:
1. Go with him to every doc appt to help him remember what to ask and remember what was said.
2. Make sure he drinks his daily water and food, every day.
3. Watch his meds and help him keep track of all that stuff.
4. Give him soft love when he needs it AND tough love when he needs it.
5. Be his spokesperson when he is unable to do it himself.
6. Try not to let him see how this is affecting you. He knows it is but there is nothing he can do about it and that only adds to his emotional state.
7. Take time for yourself. Don't over do it. That won't help in the long run.

Remember it will get tough for both of you but probably for only 6 weeks or so.

--------------------
David
END QUOTE

Thank you so much, Pete. I am just learning the terminology but I think my mom is T3N2M0 (Does the N indicate the number of lymph nodes involved?) Your advice on staggering our visits is great. We just found out today that she starts on the 26th so we will plan the first visit during her 3rd week and stagger them throughout. As I have read in many posts, the doctor told her today that the two weeks following treatment are the absolute worst so we will plan to have one of us there at that point as well. Thanks for the copy of David's quote...that helps a lot.

She is getting a PEG but she wants to try not to use it and she said she will practice her swallowing. I can't tell you how glad I am that I registered for this site. Just in the last few hours it prepared me for her appointment today in terms of having some knowledge about the road ahead of her.

Jen, Yes the N means the number of lymph nodes involved. There's a section here with all the definitions listed, just try the search engine when you get time. It will help. Keep posting and people on here will be able to help. Your Mom is truly blessed to have such caring daughters. My sons were such strengths for me throughout my treatments. Don't know how I would of gotten through without them. Take care and know your Mom and your family are in my thoughts and prayers. Linda

Jen,
I am sure you will get a lot of support and constructive advice from this forum as many of us have gone through similar battle as your mom is prepared to face now. Stay positive and stand by your mom at all times. You can see from my signature that my cancer was more advanced than your mom and after chemo-radiation, I am able to be in remission for over 5 years and have confidence that I shall enjoy many more years of good health ahead. Don't hesitate to voice your problems and ventilate here. Good luck!

Karen

Jen,

You are doing the best thing you can for her right now and that's getting informed. Read the books and all handouts the nurses give. Chat a lot on this site and talk to others who went through this first hand if you can.

Stay Stong
Tim

I just want to thank all of you for your kind words and support. My mom started yesterday with the radiation and the cisplatin (3x). She did great and decided that she will call the cisplatin days her "Spa Days". She is in Seattle and said that there is a beautiful view of the Cascades outside the window where she gets her treatment. So armed with her IPOD and that view, she is putting a positive spin on this. It is very hard being so far away but we have a schedule all mapped out and one of us will be with her from her 3rd week out to the 8th week.
I can not say thank you enough and I will keep posting and reading and staying informed. God bless all of you.