Scared- please read
Comments
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Breaking Wind...CivilMatt said:feel better
Cherie,
I agree with Big ‘T’, we are all behind you, your family and your Dad as you all help each other on this journey.
Often a little humor helps to take some wind out of cancer’s sail. Believe you I know how alone and helpless you feel.
Best always,
Matt
Matt, I love that you share my Abi-Normal humor, and can break wind with the best of us..., LOL.
JG
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Cherie
I can't add much to what has already been said. Just keep in mind we are all here to help you and your family get through this. One thing that helped me get through treatments and recovery, make sure your Dad has something down the road to look forward too that has nothing to do with cancer. It's easy to get totally wrapped up into treatment where each and every day seems to totally consumed with just the cancer battle. I needed something to take me beyound that.
Many of us on here are living proof that cancers butt can be kicked. Keep Dad positive and focused and he too will become a survivor.
Just my two cents worth.
Jeff
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Echoing others.....
You've found a good site for support. I honestly think that caregivers have it worse than we patients, they worry more about us then we do.
I was surprised in March of 2012 to find that what I though was a sore throat turned out to be SCC base of tongue with left lymph nodes involved. My wife was beside herself while I was confident that I'd be fine, sure, I would not feel all that chipper and it would take time, but I was very positive that I'd get well. It sounds like your dad is positive as well.
My two cents on my experience
Infusion port - I had one and it made the issues of iv's and blood tests so much easier. No fishing for a vein in my arms or hands. Be aware that there is a potential side effect from ports that is not always communicated to the patient. There is a risk of deep vein thrombosis with a port. Watch for sensitivity in whichever side they install it on, I had a swollen neck and what I thought was a sore muscle, turned out to be the clot. it is rare side effect
Hydration - treaments are killing off the cancer cells. The body will break down the dead cells and then flush the residue through the kidneys. Lots and lots of water, no matter how uncomfortable it might be facilitates clearing the by-products and keeps you feeling fairly good.
Feeding tube. I would not have made it without mine. It is an easy procedure, tender for a few days and takes some getting used to, but absolutely essential to maintain good nutrition.
Swallowing. Keep at it, swallow whenever and where ever he can. It will hurt - doctors will prescribe pain medications, TAKE IT, he won't become addicted. The swallowing muscles can 'forget' how to work. I kept swallowing and endured my wife's well intentioned nagging to keep swallowing. Without it, you can wind up having to have the tube permanently.
Food. Eat the 'un-diet' while he can. Proteins, fats, calories, calories, calories. His body will need protein reserves to heal the tissues that radiation will impact
Infection - while on chemo most people's immune systems are comparable to a new-born. An infection that you or your siblings would easily deal with can be a big issue for your dad. Watch contact with others, watch for higher temps. Check with his doctors but for the most part, anything over 100 or so is something serious.
Attitude. is EVERYTHING. He sounds positive, he will likely need emotional support but will likely not ask it. It will be up to his caregivers to 'be there' for him, even if he never asks, he will need 'hand holding' from time to time.
He already sounds like he has a good support system with a loving daughter, even if she is a peg leg at the moment.
Best wishes.
Peter
BTW, my cancer was squamous cell, stage IVa, I had induction chemo, then concurrent chemo (weekly for 8 weeks) and 33 radiation treatments, daily for 7 weeks, and a neck dissection for the lymph nodes in October, and my cancer is gone. Some side effects that will improve over time but I'm back to my 'normal' life, no evidence of disease, and a very good outlook!
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Welcome aboard
Cherie
Welcome to you, your dad & family. I can't add much to what my fellow survivors and caregivers have said.
And you've already figured out how to read the older posts which is what I did when I was new 2-1/2 years ago. Your dad will get thru this and you will be a huge help by relaying things to him and staying in touch with all of us if you/he have questions.
I am a huge fan of the feeding tube -- I truly think it saved me hours of anxiety worrying about how to keep eating and drinking enough to stay alive. So tell your dad not to fear the PEG !! It was a lifesaver. Once he learns how to use it, it will become second nature and literally become a part of his every day routine (like Phrannie says).
For most of us.....99% probably, the feeding tube is TEMPORARY and can be removed after treatment is over and recovery is well underway.
Definitely check out the SuperThread. It is filled with lots of tips on getting thru the treatment. It covers just about anything that might cross your dad's path in the next few months, and if you can't find the answer there, just ask us.
Sending hugs to you and your dad's way that he may have an easy journey.....(and Phrannie will put him in her pocket for safekeeping which is a great place to be)
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Hi Cherie
What everybody here has already said... Your Dad will survive this. I was diagnosed as a Stage 4, and I'm still around and doing well at my three year anniversary. I had the PEG tube, and needed to use it every day. It was easy to get used to, and worked very well for me. Shortly after treatment ended, it was removed. Now I have a neat little 'second belly button' scar to remember it by.
Remember to breathe. Try to relax. And take it one step at a time.
Deb
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I think it's wonderful ofTracyLynn72 said:You're very welcome!
You are very welcome! I'm still a newbie here and am learning SO much from these wonderful people. They have all had great words of wisdom for you Tell him to eat, eat, eat and enjoy it right now. I had NO idea about the mouth sores or loss of taste. I wasn't warned that could happen. I would have packed on a few pounds before treatment as I had no idea the weight loss that would happen. I'm down 20lbs since my surgeries in March.
Keep reading and posting. Knowledge is power!
I think it's wonderful of everyone who participates on these forums. I definetly feel more informed on what to expect so I can't thank you and everyone else enough for their input. Are you still going through treatments? How are you doing now other than weight loss and other symptoms you previously mentioned?
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I'm so happy to here that youphrannie51 said:Yes...my cancer is
gone....hasn't been seen since last July or so ....I'm due for my 3 month Onc check next week....where I'm sure they'll set me up for my 9 month scan (I finished rads last June, but had 3 more chemo's after they were done, so didn't finish all treatment until the end of August).
The tube is no biggie....honest. I did have some pretty decent cramping the first 3 days or so, then it all subsided, and I just wore it like another appendage. I actually never used it during radiation....but needed it exclusively after rads ended, and the new chemo began. It is truly considered minor surgery....basically a large piercing....I too had mine installed before I started treatments and was glad I did, as getting one in the middle just kind of adds misery upon misery. Glad to hear he's getting a port, it makes getting chemo....as well as extra hydration or transfusions (if needed) a snap....finding a vein during treatment can sometimes be a pain in the patootie.
Trust me, you will find your place in the "helping" aspect....you might not be able to do the moving/cleaning part....but you're here, and you're learning from people who have gone thru this....the knowledge found here is invaluable. You'll be the idea-person....the one who can say, "try this", "give this a whirl".....
Hard12find gave you some great advice for this part of the journey....he might as well start eating everything he wants to. Added weight will soon be gone. I only lost 16 lbs during treatment, but started out at 97, so tho my weight loss was minimal, I still came out pretty skinny. Knowing I was going to lose my taste buddies, and my saliva.....I mentally started working on myself to quit eating for pleasure, and start seeing it as a job early on....started eating by the clock instead of only eating when hungry.
The folks here will fill you in on nifty tricks and tips for getting thru this treatment....practical things that make it more doable. They're brilliant....plus it's kind of like putting the heads of many Dr.'s and patients from across the country together, so if one idea doesn't work, there's another waiting in the wings.
Another great part of this board, you never have to wait long for an answer....there always seems to be someone here.
p
PS....your dad and I are just about the same age....I was 61 when I started treatment....you said other than having cancer he's in good health.....that's a real plus!!
I'm so happy to here that you are cancer free! That's great news. Also a little relieved about the feeding tube, although it still worries me a bit. I really believe my dad will be strong like you and "force" himself to get the proper nutrition. I admire that about you and so many others on this site. I really want to encourage my parents to get on here. I wish you the best for your appt next week. Please let us know how it goes!
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CivilMatt and Fishmanpa-CivilMatt said:feel better
Cherie,
I agree with Big ‘T’, we are all behind you, your family and your Dad as you all help each other on this journey.
Often a little humor helps to take some wind out of cancer’s sail. Believe you I know how alone and helpless you feel.
Best always,
Matt
CivilMatt and Fishmanpa- Thanks for the encouragement and I agree that you have to laugh. It's just still really new news to my family but believe me there isn't a day I don't try to laugh and make the best out of things. I had never heard of a PEG tube so I looked into it. How is that different from a g tube?
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Jeff,Duggie88 said:Cherie
I can't add much to what has already been said. Just keep in mind we are all here to help you and your family get through this. One thing that helped me get through treatments and recovery, make sure your Dad has something down the road to look forward too that has nothing to do with cancer. It's easy to get totally wrapped up into treatment where each and every day seems to totally consumed with just the cancer battle. I needed something to take me beyound that.
Many of us on here are living proof that cancers butt can be kicked. Keep Dad positive and focused and he too will become a survivor.
Just my two cents worth.
Jeff
Thanks so much for theJeff,
Thanks so much for the kind words and support. I know dad will make it through this. I'm very close to my parents, just hate seeing loved ones go through this as we all do on here I reached out to this site and I'm glad I did bc I really was scared about dad starting chemo in 2 days, but I feel a little more informed, which makes me feel a little better. If you don't mind me asking, what type of cancer were you diagnosed with and what was your treatment plan like? Thx again!
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Thank you Peter. I trulyyensid683 said:Echoing others.....
You've found a good site for support. I honestly think that caregivers have it worse than we patients, they worry more about us then we do.
I was surprised in March of 2012 to find that what I though was a sore throat turned out to be SCC base of tongue with left lymph nodes involved. My wife was beside herself while I was confident that I'd be fine, sure, I would not feel all that chipper and it would take time, but I was very positive that I'd get well. It sounds like your dad is positive as well.
My two cents on my experience
Infusion port - I had one and it made the issues of iv's and blood tests so much easier. No fishing for a vein in my arms or hands. Be aware that there is a potential side effect from ports that is not always communicated to the patient. There is a risk of deep vein thrombosis with a port. Watch for sensitivity in whichever side they install it on, I had a swollen neck and what I thought was a sore muscle, turned out to be the clot. it is rare side effect
Hydration - treaments are killing off the cancer cells. The body will break down the dead cells and then flush the residue through the kidneys. Lots and lots of water, no matter how uncomfortable it might be facilitates clearing the by-products and keeps you feeling fairly good.
Feeding tube. I would not have made it without mine. It is an easy procedure, tender for a few days and takes some getting used to, but absolutely essential to maintain good nutrition.
Swallowing. Keep at it, swallow whenever and where ever he can. It will hurt - doctors will prescribe pain medications, TAKE IT, he won't become addicted. The swallowing muscles can 'forget' how to work. I kept swallowing and endured my wife's well intentioned nagging to keep swallowing. Without it, you can wind up having to have the tube permanently.
Food. Eat the 'un-diet' while he can. Proteins, fats, calories, calories, calories. His body will need protein reserves to heal the tissues that radiation will impact
Infection - while on chemo most people's immune systems are comparable to a new-born. An infection that you or your siblings would easily deal with can be a big issue for your dad. Watch contact with others, watch for higher temps. Check with his doctors but for the most part, anything over 100 or so is something serious.
Attitude. is EVERYTHING. He sounds positive, he will likely need emotional support but will likely not ask it. It will be up to his caregivers to 'be there' for him, even if he never asks, he will need 'hand holding' from time to time.
He already sounds like he has a good support system with a loving daughter, even if she is a peg leg at the moment.
Best wishes.
Peter
BTW, my cancer was squamous cell, stage IVa, I had induction chemo, then concurrent chemo (weekly for 8 weeks) and 33 radiation treatments, daily for 7 weeks, and a neck dissection for the lymph nodes in October, and my cancer is gone. Some side effects that will improve over time but I'm back to my 'normal' life, no evidence of disease, and a very good outlook!
Thank you Peter. I truly appreciate all the helpful info and kind words. My dad does have awesome support and I'm glad my parents are getting ready to move which is something he truly looks forward to. I think that will occupy a lot of his time. He typically is a very busy man! The new house he bought had a small pond which my dad enjoys. I fish with him so at least with my broken leg I know I can do things like that with him if he's up for it.
I'm so happy to hear that your cancer is gone! That gives me a new hope every time I hear that. Glad to hear you've returned to feeling normal for the most part! Best wishes to you as well
.
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Thanks Ingrid. It touches myIngrid K said:Welcome aboard
Cherie
Welcome to you, your dad & family. I can't add much to what my fellow survivors and caregivers have said.
And you've already figured out how to read the older posts which is what I did when I was new 2-1/2 years ago. Your dad will get thru this and you will be a huge help by relaying things to him and staying in touch with all of us if you/he have questions.
I am a huge fan of the feeding tube -- I truly think it saved me hours of anxiety worrying about how to keep eating and drinking enough to stay alive. So tell your dad not to fear the PEG !! It was a lifesaver. Once he learns how to use it, it will become second nature and literally become a part of his every day routine (like Phrannie says).
For most of us.....99% probably, the feeding tube is TEMPORARY and can be removed after treatment is over and recovery is well underway.
Definitely check out the SuperThread. It is filled with lots of tips on getting thru the treatment. It covers just about anything that might cross your dad's path in the next few months, and if you can't find the answer there, just ask us.
Sending hugs to you and your dad's way that he may have an easy journey.....(and Phrannie will put him in her pocket for safekeeping which is a great place to be)
Thanks Ingrid. It touches my heart that so many ppl on here have created such a strong support system. Also Thx for the positive info on the peg tube. I can see how staying positive can work wonders! I hope that you are doing great and hugs returned!
P.s. I will check out the super thread by the way! A few of you have mentioned that.
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I'm getting closeCherieLW said:I think it's wonderful of
I think it's wonderful of everyone who participates on these forums. I definetly feel more informed on what to expect so I can't thank you and everyone else enough for their input. Are you still going through treatments? How are you doing now other than weight loss and other symptoms you previously mentioned?
I'm 2/3 of the way done. I break it up into chunks and think of it that way. I was one week done, 1/3 done, 1/2 done, etc.. It helps me make little milestones and celebrate them
I'm actually feeling much, much better. Side effects hit me very early. Literally 15 minutes after my SECOND day of treatment, I had a salivary gland get "backed up" and my face started swelling back up. I had to eat sour candy to make myself drool, and the drool hasn't stopped! haha They are mostly worried about me losing weight to make sure the mask I wear still fights tightly. It does because I still have swelling from my surgeries and this crazy salivary gland. I've lost 20lbs and feel pretty good about it!
Stick with this site and listen to all the people who are months/years out of treatment. They keep me looking forward to new milestones.
Your dad is gonna kick this thing. I just know it!
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Base of tongueCherieLW said:Jeff,
Thanks so much for theJeff,
Thanks so much for the kind words and support. I know dad will make it through this. I'm very close to my parents, just hate seeing loved ones go through this as we all do on here I reached out to this site and I'm glad I did bc I really was scared about dad starting chemo in 2 days, but I feel a little more informed, which makes me feel a little better. If you don't mind me asking, what type of cancer were you diagnosed with and what was your treatment plan like? Thx again!
Mine was at the base of my tongue Squamous something. I never really cared what it was called I just wanted to get rid of it. December 18, 2009 they sliced me from ear to ear and took out part of the tongue, my epiglotis, my uvula, and some lymphnodes on the left side of my neck. The surgeon was so sure he got it all he only wanted me to do 30 radiation treatments. I finished radiation and started my new life March 30, 2010. Now I am spending the kids inheritance.
Your Dad is lucky to have such a loving daughter. Again, never be afraid to ask questions. I found this site after my operation and never really got involved until a few months back. I've never met anyone from the site but I feel like we are all family with one common goal..............TO KICK CANCERS BUTT.
Enjoy the day
Jeff
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CherieD Lewis said:Hi Cherie
What everybody here has already said... Your Dad will survive this. I was diagnosed as a Stage 4, and I'm still around and doing well at my three year anniversary. I had the PEG tube, and needed to use it every day. It was easy to get used to, and worked very well for me. Shortly after treatment ended, it was removed. Now I have a neat little 'second belly button' scar to remember it by.
Remember to breathe. Try to relax. And take it one step at a time.
Deb
Gosh I'm so late getting on here but I echo what all the others have had to say. I'm sorry you found the need to join us but welcome welcome welcome! We are here to help but most of all to show you that this is so doable!!! I know you're scared, trust the word cancer scared the crap out of me! Mine was (notice the word WAS) stage IV laryngeal SCC HPV negative. I had 8 erbitux treatments which is a form of chemo but not exactly the same as other chemos and 35 rad treatments too. I won't lie to you, it's tough but again so doable. I also had a feeding tube and like Phrannie said, peice of cake! A little crampy/achy for a few days but totally worth it. Unlike Phrannie I got mine in the middle of treatment, I tried to get it before treatment started but my oncologist is so conservative and had hopes I wouldn't need it. I too started out really thin and I only lost about 13-14lbs but for me that was a ton! I started out at 100lbs. Better to get the tube up front.
I dont know where your dad is located and how far from you but you being able to pass on all this info to him will be the most valuable help he will have and need.
Stay with us and ask us anything you need to, no question is off limits.
Take good care,
Billie0 -
That's a good way to look atTracyLynn72 said:I'm getting close
I'm 2/3 of the way done. I break it up into chunks and think of it that way. I was one week done, 1/3 done, 1/2 done, etc.. It helps me make little milestones and celebrate them
I'm actually feeling much, much better. Side effects hit me very early. Literally 15 minutes after my SECOND day of treatment, I had a salivary gland get "backed up" and my face started swelling back up. I had to eat sour candy to make myself drool, and the drool hasn't stopped! haha They are mostly worried about me losing weight to make sure the mask I wear still fights tightly. It does because I still have swelling from my surgeries and this crazy salivary gland. I've lost 20lbs and feel pretty good about it!
Stick with this site and listen to all the people who are months/years out of treatment. They keep me looking forward to new milestones.
Your dad is gonna kick this thing. I just know it!
That's a good way to look at things Tracy. I'm going to suggest that to my parents. I'm having dinner tonite with them. It's hard for me to talk about, but I'm going to try. Maybe it will put his mind at ease. I'm sure that's what helps you move through treatment knowing you are achieving milestones. One step closer to feeling better! Can you describe what radiation feels like? I hate asking, but I just feel like the more I know, the more it puts my mind at ease of that's possible. I'm glad side effects for you are minimal!
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Wow, you really are a strongDuggie88 said:Base of tongue
Mine was at the base of my tongue Squamous something. I never really cared what it was called I just wanted to get rid of it. December 18, 2009 they sliced me from ear to ear and took out part of the tongue, my epiglotis, my uvula, and some lymphnodes on the left side of my neck. The surgeon was so sure he got it all he only wanted me to do 30 radiation treatments. I finished radiation and started my new life March 30, 2010. Now I am spending the kids inheritance.
Your Dad is lucky to have such a loving daughter. Again, never be afraid to ask questions. I found this site after my operation and never really got involved until a few months back. I've never met anyone from the site but I feel like we are all family with one common goal..............TO KICK CANCERS BUTT.
Enjoy the day
Jeff
Wow, you really are a strong guy! I'm glad to hear that you are doing well and I hope you continue to do so. I hate to hear that treatments are so expensive. I am completely in the dark with how expensive this will end up being. I just know I will do whatever it takes to make sure dad stays on top of things. Thanks again for the info, if there's anything anyone else or you would like to add that you think may be helpful feel free to msg me or reply.
Dad is lucky! He has a very loving wife (my mom) married almost 36 yrs. He of course has me and 2 other daughters that care immensely. I hope he knows I'm always going to be there and make sure he has the best care possible. He helped make me the person I am today. . I think it's awesome that everyone here is like a family, I have felt very welcome since minute one.
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Thanks Deb, I'm trying toD Lewis said:Hi Cherie
What everybody here has already said... Your Dad will survive this. I was diagnosed as a Stage 4, and I'm still around and doing well at my three year anniversary. I had the PEG tube, and needed to use it every day. It was easy to get used to, and worked very well for me. Shortly after treatment ended, it was removed. Now I have a neat little 'second belly button' scar to remember it by.
Remember to breathe. Try to relax. And take it one step at a time.
Deb
Thanks Deb, I'm trying to work on that relaxing thing.
My dad thought he had a sinus infection that wouldn't go away for a long time. When he did finally go to the doc they tried several antibiotics and nothing. I hope me just putt8ng that out there it will encourage others to get checked out if they think something isn't right or it doesn't go away. Im trying to look at it positively, they caught it early. Congrats on your anniversary! 3 years cancer free is great! I will pray that it stays that way!
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Have a nice dinner tonight..CherieLW said:That's a good way to look at
That's a good way to look at things Tracy. I'm going to suggest that to my parents. I'm having dinner tonite with them. It's hard for me to talk about, but I'm going to try. Maybe it will put his mind at ease. I'm sure that's what helps you move through treatment knowing you are achieving milestones. One step closer to feeling better! Can you describe what radiation feels like? I hate asking, but I just feel like the more I know, the more it puts my mind at ease of that's possible. I'm glad side effects for you are minimal!
and tell him to eat, eat, eat!! No one warned me I could lose all sense of taste and that I'd have nasty mouth sores. If I had known I would have eaten a LOT more before starting treatment...and enjoyed every bite!
The small milestones have made things MUCH easier for me because I feel like I meet a "goal" each week. My techs tell me every treatment "one day at a time, there's another one done" and that makes me smile each time!
Honestly, radiation doesn't feel like anything. It's like getting an xray, you hear noises and you have to be still, but you don't really feel anything. It's the side effects that you "feel" more than anything. Tell him to always be upfront with his doctors and if he needs medicine...get it and use it. No shame in that at all! I use the magic mouthwash and it's fantastic. I also rinse every hour or so with 1 quart of water, 1 tbsp salt, and 1 tbsp baking soda. My trouble right now is eating. I can't taste anything and so everything tastes like snot to me. Gross, I know, but true.
Let him know about this site, he might enjoy reading up on things, too. I hope you have a very nice dinner and keep things upbeat. He's going to have tough times, we all do, but he's going to come out of this stronger and well!
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Thanks for the positiveBillie67 said:Cherie
Gosh I'm so late getting on here but I echo what all the others have had to say. I'm sorry you found the need to join us but welcome welcome welcome! We are here to help but most of all to show you that this is so doable!!! I know you're scared, trust the word cancer scared the crap out of me! Mine was (notice the word WAS) stage IV laryngeal SCC HPV negative. I had 8 erbitux treatments which is a form of chemo but not exactly the same as other chemos and 35 rad treatments too. I won't lie to you, it's tough but again so doable. I also had a feeding tube and like Phrannie said, peice of cake! A little crampy/achy for a few days but totally worth it. Unlike Phrannie I got mine in the middle of treatment, I tried to get it before treatment started but my oncologist is so conservative and had hopes I wouldn't need it. I too started out really thin and I only lost about 13-14lbs but for me that was a ton! I started out at 100lbs. Better to get the tube up front.
I dont know where your dad is located and how far from you but you being able to pass on all this info to him will be the most valuable help he will have and need.
Stay with us and ask us anything you need to, no question is off limits.
Take good care,
BillieThanks for the positive feedback Billie! I appreciate everyone's input! I'm learning a lot and I'm glad to hear that the feeding tube wasn't as big of a deal as I thought. Hope that you continue feeling better and stay that way. I'm going to pass this info along to the family.
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Hi Cherie ,CherieLW said:That's a good way to look at
That's a good way to look at things Tracy. I'm going to suggest that to my parents. I'm having dinner tonite with them. It's hard for me to talk about, but I'm going to try. Maybe it will put his mind at ease. I'm sure that's what helps you move through treatment knowing you are achieving milestones. One step closer to feeling better! Can you describe what radiation feels like? I hate asking, but I just feel like the more I know, the more it puts my mind at ease of that's possible. I'm glad side effects for you are minimal!
I'm glad that you found this board . Everyone on here , as you know are so knowledgable and so happy to help! I am a "Newbie" and can't offer a lot , but I can tell you that you don't feel anything during Radiation treatments . The worse part is having to wear a mask that they make for you so that you can't move your head . After the first few times it didn't bother me as much. Then after a few treatments it starts to feel more and more like a bad sunburn but they will tell you what to use for that. I started useing Aquaphor (you can buy it at any Drug store or Wal-mart.) at the very start of treatments and I never had any blisters or sores.I used it twice a day once after treatments ( they don't want anything on the neck before treatments)and again at bedtime. It feels very greasey and some on here didn't like that but it didn't bother me. If his gets bad there are some other creames that others used that will help more. I hope this helps .
Peggy
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