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#52569 05-05-2002 02:34 PM
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molly Offline OP
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Thank you all so much for your suggestions on gettting my sister to keep down her ENSURE and BOOST by giving it to her very slowly and sitting up for awhile after her meal. She got down two cans today and kept them down, which we are all very grateful for. She still is mighty weak and full of anxiety and nausea, which her DR. has given her a script for (anxiety and nausea). I will be searching for peppermint oil tomorow. Another question she and we wanted to ask is when can she look for a turn around in feeling better? Days...months? Her daughter's prom was last night and it was a real task for her to sit up in the living room and be a part of the big night for a few minutes, yet she did it. She just wonders WHEN do you start to feel better? Thanks for everyone's great help!!

#52570 05-05-2002 04:32 PM
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It is different for everyone, so many factors are involved, but for sure it won't be days. Hope for weeks, but expect months. Everyone says about the same thing from end of treatment to feeling somewhat normal, one month for every week of radiation. Sounds tough, and it is, but the trick is to keep looking towards that better time, and know that it is coming.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#52571 05-06-2002 04:57 AM
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Hi Molly.......Like Brian says, it will be more than weeks, probably months before your sister will begin to feel better. It was a little over a year before I felt really really good; however, at the six month mark I was eating, drinking, and back to my somewhat normal, but still limited routine. At six months fatigue was still an issue for me and yet today, five years later, I still require a nap somedays. A few things that helped with my recovery --everyday, no matter how I felt, I tried to take a little walk. Sometimes it was just to the end of the driveway and back but even then I felt a sense of accomplishment. I also tried to get out of my PJ's and get dressed on a daily basis and this made me look better although some days I still didn't feel any better. I think it helped my kids veiw me as not being so sick, even though I really was. And I spent a good amount of my time just sitting on the deck, outside, breathing in some fresh air. The sun is a natural healer, I think. Your sister will continue to have good days and bad days for a very long time. At this point, my support system really kicked in too, helping with meals, cleaning the house, and caring for my son, Sam, so I didn't have those responsibilities to think about. One of the very hardest things for me to do during my time of recovery was to ask for help with domestic chores and to watch someone else take over because I couldn't do much of anything. Your sister may be feeling a bit helpless and a bit of a burden at this point---try to reassure her that she is neither. Hearing someone say those words to me somehow made me feel a bit better emotionally. This is just such a difficult time, not only for your sister, but for the whole family as well. Cancer truly is a family affair! This bad time will pass and slowly your sister will begin to feel better. It just takes time. Keep us posted on her progress, and I wish you the best during this difficult time. Sincerely, Donna


SCC first time 1989, with a diagnoses of 'cancer in situ' removed lesion, no other treatments.
SCC recurrence 1997 of tongue and floor of the mouth. Stage III /IV Hemmiglossectomy (removed over 60% of tongue/ floor of the mouth), free flap, modified neck, RAD and Chemo(cisplatin, 5fu) simutainously.
Cancer free 6, yes, six, years!
#52572 05-06-2002 11:39 AM
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Molly, everyone heals at their own pace. I did not have RAD or Chemo, but I lost 1/3 of my tongue, and the bottom of my mouth was rebuilt from the skin taken from my neck during the radical neck dissection. I was back to work within 8 weeks. Of course, everyone comments on how quickly I heal. Not sure why, must just be my impatience with things in life. I like your sister also had really big problems with the Ensure. Check out some health food stores, I finally found a supplement that I could handle. It however was made with water, so it wasn't quite as thick. Tell your sister many people are out here cheering for her. As Donna said, support and reasuring words from those around you are worth a million. Take care. Anne.


Anne G.Younger
Life has never been better.
#52573 05-06-2002 06:23 PM
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Its been almost 11 months since I finished radiation and I'm still only about 75% functional - maybe slightly less. I am vastly improved from where I was 6 months ago. Many friends who've had various cancers all unanimously agree that it takes at least a year to feel "yourself" again. I still don't feel like a put in a full day of work by my standards although today was 7-8 hours in the office and 1-2 hours of work at home (the joys of being a business owner). Its rare that I can do that much in one day and I expect to be really exhausted tomorrow. I was at a 2 day conference last week and the day after I could only handle 1/2 a day of work. Part of my problem is probably that all my nutritional values are low because of the difficulty I have eating. I'm working on it. It has been very hard for me to accept that my strength of will isn't enough to make me completely better. I had surgery (1/4 tongue removed and neck dissection) 14 years ago and was back at work 2 weeks after surgery and pretty much back to a full schedule within 2 months. The two surgeries and radiation last year on my somewhat older body smile have been more difficult to recover from. Its hard to see progress day to day but when I look back I can see how much I've improved. I've also had to come to terms with not being able to control everything (hard for a control freak) and that there are somethings that I think need to get done that just aren't going to get done. Funny how some previously "important" things have turned out not to be the really important things.
ilene


ilene
SCC stage 1 1987, 1/4 of tongue removed, neck dissection, SCC stage 3 2000, another 1/4+ removed second neck dissection, radiation.
#52574 05-07-2002 06:21 AM
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I completely relate to what I'm reading on this post. Of course since we all had different treatments, and we are unique physically, so we have different experiences as a result. 3.5 years out from my last treatment life is pretty good, but it isn't the life that I had before all this began. I was always physically fit. My wife and I did lots of outdoor things, like hiking in the mountains, and in the winter we would snowshoe cross-country at Lake Tahoe etc., but today I couldn't engage in those activities.

Perhaps it has to do with the volume of radiation exposure. I had the maximum dose allowable before the radiation permanently damaged my spinal cord...even then they didn't get it all, and surgery was necessary to remove the balance. I like to think that I am back 100%, but I find myself getting tired early in the day, a long flight of stairs takes it out of me, and I don


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#52575 05-07-2002 05:11 PM
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molly Offline OP
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Thank You Donna for your suggestion for my sister to set a goal everyday, whether sitting on a deck or going to the mailbox. I told her of this and I think she took it to heart. I think it will give her encouragement that she can build her health back up a little at a time. Thank You.

#52576 05-07-2002 05:24 PM
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molly Offline OP
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My sister saw her oncologist today, 4 days after getting a nose feeding tube. She wasn't doing very well. Still nauseus, vomiting, and diahreah.and only tolerating 2 cans of Boost a day if that. We were giving it slow and having her sit up afterward but she still had a hard time. Her oncologist said that she is below average in her recovery due to lack of nutrition. Tomorrow she will hav an IV drip delivered to her home to be attached to her nose tube to give her nutrition 24/7. Oh how I hope this works. She has been through so much as you all have. I keep telling her the encouragement that ya'll give and that all of you agree that you feel so bad and can't imagine getting better but you do. She is withdrawing into herself alot and looks at me in disbelief when I tell her that this is temporary. I pray that she will one day
be on this website giving words of encouragement to others. Thank you for all your support.

#52577 05-07-2002 06:17 PM
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Dear Molly,
sorry to hear your sister is not feeling well as of yet. Keep positive and remember, ths is all hopefully temporary. They say sometimes you are literally going to walk through hell with this awful disease before recovery. Know we all are pulling for your sister and family! Love and prayers to you. Keep us posted.
Brooke


Hope is the one thing no one can take away from you!!!

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