more advice

Pumakitty

My dad has always been a big sleeper, sometimes to much. I am worried the once the treatment starts that all he will want to do is sleep. The doctors really push that he needs to stay active.

After he sleeps all day his mouth is really sore from drying out while sleeping.

Any suggestions?

I know his sleeping is not because of the cancer, because this is the way he has always been.

Hondo

Hi Pumakitty


As he goes through treatment he might want to sleep a little more then normal as the treatment will be very hard on his body. I did OK with the radiation but could not hold up to the Chemo, on my chemo days I would sleep the hole day sometimes not get up until late at night and then go right back to sleep again.

On the dry mouth I use two different mouth sprayers that help me to sleep, one is biotene Moisturizing Mouth Spray, you can get at Walgreens and the other Stoppers 4 Dry Mouth Spray I get on line at www.drugsstore.com

Hope this helps,

Pumakitty

Hondo said:

Hi Pumakitty


As he goes through treatment he might want to sleep a little more then normal as the treatment will be very hard on his body. I did OK with the radiation but could not hold up to the Chemo, on my chemo days I would sleep the hole day sometimes not get up until late at night and then go right back to sleep again.

On the dry mouth I use two different mouth sprayers that help me to sleep, one is biotene Moisturizing Mouth Spray, you can get at Walgreens and the other Stoppers 4 Dry Mouth Spray I get on line at www.drugsstore.com

Hope this helps,

Thanks
Hondo,

This did help. Did you get really sick with the Chemo or just tired and how often did you do the chemo. My dad will do it once a week for a 2 hour session.

What type of pain medicine did you have?
I am sorry to ask so many questions, but I feel that I get honest answers from this group.

I think my dad is starting to get tired or waiting for the treatment to start. I am hoping that it will be this Friday. I know that he is in a lot of pain from the sore in his mouth and is starting to think it will never get better.

I guess I am worrying to much and starting to get on his nerves asking questions.

Kent Cass

Pumakitty said:

Thanks
Hondo,

This did help. Did you get really sick with the Chemo or just tired and how often did you do the chemo. My dad will do it once a week for a 2 hour session.

What type of pain medicine did you have?
I am sorry to ask so many questions, but I feel that I get honest answers from this group.

I think my dad is starting to get tired or waiting for the treatment to start. I am hoping that it will be this Friday. I know that he is in a lot of pain from the sore in his mouth and is starting to think it will never get better.

I guess I am worrying to much and starting to get on his nerves asking questions.

MM, etc.
Your Dad is getting the least-extreme of the Chemo deliverys, which might be good news. Might be. The nausea is commonplace, but there are meds to help with- such as Compazine, and others. For me, the worst of the nausea was early in the morning, upon waking.

Vicodin is the staple for pain, it seems. I used it, when not on liquid morphine- made necessary by my Cisplatin delivery. Morph does not seem to be needed with his delivery, but there are factors which may make it so. Would urge caution in the morph use- the stuff scared me, and I was on for four of five consecutive weeks: morph is last resort stuff. Vicodin, hopefully, will be all he needs to get thru it.

Is your Dad using Magic Mouthwash? If not- you must ask your Onco Dr. about. Really does help. The name of it seems kinda flippant, but that is what everybody calls it- and the effectiveness of it really is significant. And, gargling with a mix of salt and baking soda is also commonly used.

Keep us informed, and...

Believe.

kcass

friend of Bill

sleeping
My sleeping experience during chemo (12 weeks, I think) and radiation (39) may be different in that I brought a sleep disorder (sleep apnea with CPAP machine and mask) and depression (treated with Cymbalta) to my cancer experience. Both my pulmonologist and psychiatrist really srtongly emphasized the importance of sleep for healing and encouraged me to sleep a lot. ENT and my oncologists were quiet on the subject. By "a lot" I don't mean laying around all day, refusing to get up. Rather, I would do something like take a shower, then take a one or two hour nap; walk around the house, then take a nap; go for a treatment, take a long, long nap! I ran into difficulties quickly because I could not use the the mask because of facial pain, so I had to use sleeping pills. The advice to "stay active" has to be balanced with the need for rest and sleep - I found I could overdo either, but early on I think sleeping as much as I could was both restorative and really helped my recovery. In another post on this board someone said water is our best friend, someone else mentioned nurtrition. I agree and would toss sleep into the mix. I needed all the "friends" I could get to survive the treatment and its aftermath. Now about 17 months, my sleep is pretty good - use the CPAP now, no pills, just have to pace myself so I don't create a fatigue crisis. Your dad is lucky to have you in his corner. Take good care of yourself. This will likely not be a quick journey. Get all the rest and support you possibly can. My wife found that sleeping was a refuge for her after she discovered sleeping in another room was better for her (every time I moved she would startle if she was in our room) as long as I had a walkie/talkie to contact her which I did occasionally. Sleeping as you both know it is probably about to change but in both our cases returned to sort of normal. Praying for strength for both of you.

Vince

Hondo

Pumakitty
My Chemo was once a week for 9 weeks, 2 to 4 hours each time depending how my body was able to handle it. Sometimes they could give it to me fast and other times they had to slow it right down to a little at a time. They gave me some pain meds right along side of the Chemo. Only took it the first two times and did not need it after. On the sore mouth, Kent makes a very good suggestion, this is the stuff we all use it help a lot, there is some other stuff that I know others are using, I never tried it so I can say

As the treatment moves forward it is going to get harder for your Dad, just stay with him and keep him focus and positive that he is going to get better, that he is going to beat this Cancer and become a Survivor.

Take care and keep us posted on your dad’s progress

Pumakitty

Hondo said:

Pumakitty
My Chemo was once a week for 9 weeks, 2 to 4 hours each time depending how my body was able to handle it. Sometimes they could give it to me fast and other times they had to slow it right down to a little at a time. They gave me some pain meds right along side of the Chemo. Only took it the first two times and did not need it after. On the sore mouth, Kent makes a very good suggestion, this is the stuff we all use it help a lot, there is some other stuff that I know others are using, I never tried it so I can say

As the treatment moves forward it is going to get harder for your Dad, just stay with him and keep him focus and positive that he is going to get better, that he is going to beat this Cancer and become a Survivor.

Take care and keep us posted on your dad’s progress

Hondo
Thank you for all of your advice. I am the most worried about him staying postive. I also worry about how well my mom will handle all of this. I am hoping that this Friday we will get things started with his first Chemo. Why did they have to slow down the chemo, was it making you sick or was something else going on?

He is already usign the mouth wash, but at this point that thing that he says makes his mouth feel the best is luke warm tea. I know that will change as the treatment goes along.

He does not want to take the strong pain meds until is necessary.


Thank you again for everything.

Pumakitty

Kent Cass said:

MM, etc.
Your Dad is getting the least-extreme of the Chemo deliverys, which might be good news. Might be. The nausea is commonplace, but there are meds to help with- such as Compazine, and others. For me, the worst of the nausea was early in the morning, upon waking.

Vicodin is the staple for pain, it seems. I used it, when not on liquid morphine- made necessary by my Cisplatin delivery. Morph does not seem to be needed with his delivery, but there are factors which may make it so. Would urge caution in the morph use- the stuff scared me, and I was on for four of five consecutive weeks: morph is last resort stuff. Vicodin, hopefully, will be all he needs to get thru it.

Is your Dad using Magic Mouthwash? If not- you must ask your Onco Dr. about. Really does help. The name of it seems kinda flippant, but that is what everybody calls it- and the effectiveness of it really is significant. And, gargling with a mix of salt and baking soda is also commonly used.

Keep us informed, and...

Believe.

kcass

Thanks, Kent
Kent,

This were very helpful. My dad is using the mouthwash and has not tried the other mix yet. I am praying that the Chemo does not make him to sick. They did mention the pain medicine they could give him would be Tylenol 3 or percocet (I can not spell). Did they give you the meds for nausea right away. Someone told me that you should start taking them even if you do not have any nausea. Also they said the first and last chemo is the worse. The doctor did not mention this to us. He told us about the nausea and fatigue, but not about certain times being worse. Did you get sick right after the treatment or days later?

Hondo

Pumakitty said:

Hondo
Thank you for all of your advice. I am the most worried about him staying postive. I also worry about how well my mom will handle all of this. I am hoping that this Friday we will get things started with his first Chemo. Why did they have to slow down the chemo, was it making you sick or was something else going on?

He is already usign the mouth wash, but at this point that thing that he says makes his mouth feel the best is luke warm tea. I know that will change as the treatment goes along.

He does not want to take the strong pain meds until is necessary.


Thank you again for everything.

Hi Pumakitty

I can understand your worry it is normal a long with the feeling of being helpless to do anything, but just be there for your dad that will means a lot to him even if you are far away.

When taking the Chemo sometimes I would start to feel faint and very light headed, so the nurse would slow down the drip.

If your dad is enjoying tea and not having any problems with it, I say let him do what makes him feel good. If it is an herbal tea he will need to let his doctors know; as good as herbal meds are sometimes they can reduce the effectiveness of the radiation and Chemo treatment.

On the pain meds I agree only take what you need when you need it.

We will all be here for you when you need I also have my e-mail address on my post.

Take care

Kent Cass

Hondo said:

Hi Pumakitty

I can understand your worry it is normal a long with the feeling of being helpless to do anything, but just be there for your dad that will means a lot to him even if you are far away.

When taking the Chemo sometimes I would start to feel faint and very light headed, so the nurse would slow down the drip.

If your dad is enjoying tea and not having any problems with it, I say let him do what makes him feel good. If it is an herbal tea he will need to let his doctors know; as good as herbal meds are sometimes they can reduce the effectiveness of the radiation and Chemo treatment.

On the pain meds I agree only take what you need when you need it.

We will all be here for you when you need I also have my e-mail address on my post.

Take care

Agree
I agree with Hondo on the tea issue- could be your Dad's body is telling him the tea is the right thing for him.

I only used the Compazine for nausea when I was dealing with the issue being active.

As for the pain meds- my Chemo delivery was different. Yes- only take what is needed when needed. And, if the pain meds provided to your Dad aren't enough- advise him to let the Drs. know.

kcass

Pumakitty

Kent Cass said:

Agree
I agree with Hondo on the tea issue- could be your Dad's body is telling him the tea is the right thing for him.

I only used the Compazine for nausea when I was dealing with the issue being active.

As for the pain meds- my Chemo delivery was different. Yes- only take what is needed when needed. And, if the pain meds provided to your Dad aren't enough- advise him to let the Drs. know.

kcass

Kent and Hondo
You guys are the best. My dad is drinking green tea with some fruit flavors or mint. He is also a big water drinker.

My dad and mom also wanted to thank you for all of the advice. He seems to have days when he is great and postive and other days when he is not doing as good. He sits around and thinks too much. I do the same things. My mom is good about getting us both back on track.

My dad worries about me and my mom as much as we worry about him.

Hondo once my dad gets over the worse of the treatments and is able to eat. I would like to talk with you about what is a good diet. I have a very bad allergy to something. I have ended up in the emergency room many times with a life threating allergic reaction. They have no idea what I am allergic to, they think that it is a additive or preservative in processed food. Since this happened the last time we have been trying to eat more natural foods. I would like to get both of my parents eating better. My dad has improved his diet greatly over the last 6 monthes. Since this happened he has been limited in what he can eat, but has still managed to gain some weight before treatment starts.

Again, you guys are the best. I hope I am not too much of a pain. Let me know if I am.

Hondo

Pumakitty said:

Kent and Hondo
You guys are the best. My dad is drinking green tea with some fruit flavors or mint. He is also a big water drinker.

My dad and mom also wanted to thank you for all of the advice. He seems to have days when he is great and postive and other days when he is not doing as good. He sits around and thinks too much. I do the same things. My mom is good about getting us both back on track.

My dad worries about me and my mom as much as we worry about him.

Hondo once my dad gets over the worse of the treatments and is able to eat. I would like to talk with you about what is a good diet. I have a very bad allergy to something. I have ended up in the emergency room many times with a life threating allergic reaction. They have no idea what I am allergic to, they think that it is a additive or preservative in processed food. Since this happened the last time we have been trying to eat more natural foods. I would like to get both of my parents eating better. My dad has improved his diet greatly over the last 6 monthes. Since this happened he has been limited in what he can eat, but has still managed to gain some weight before treatment starts.

Again, you guys are the best. I hope I am not too much of a pain. Let me know if I am.

Raw Foods
Anything I can do to help just let me know, right now I too am on a Raw food diet, you could not believe how good it makes your body feel.

thegirlfriend

friend of Bill said:

sleeping
My sleeping experience during chemo (12 weeks, I think) and radiation (39) may be different in that I brought a sleep disorder (sleep apnea with CPAP machine and mask) and depression (treated with Cymbalta) to my cancer experience. Both my pulmonologist and psychiatrist really srtongly emphasized the importance of sleep for healing and encouraged me to sleep a lot. ENT and my oncologists were quiet on the subject. By "a lot" I don't mean laying around all day, refusing to get up. Rather, I would do something like take a shower, then take a one or two hour nap; walk around the house, then take a nap; go for a treatment, take a long, long nap! I ran into difficulties quickly because I could not use the the mask because of facial pain, so I had to use sleeping pills. The advice to "stay active" has to be balanced with the need for rest and sleep - I found I could overdo either, but early on I think sleeping as much as I could was both restorative and really helped my recovery. In another post on this board someone said water is our best friend, someone else mentioned nurtrition. I agree and would toss sleep into the mix. I needed all the "friends" I could get to survive the treatment and its aftermath. Now about 17 months, my sleep is pretty good - use the CPAP now, no pills, just have to pace myself so I don't create a fatigue crisis. Your dad is lucky to have you in his corner. Take good care of yourself. This will likely not be a quick journey. Get all the rest and support you possibly can. My wife found that sleeping was a refuge for her after she discovered sleeping in another room was better for her (every time I moved she would startle if she was in our room) as long as I had a walkie/talkie to contact her which I did occasionally. Sleeping as you both know it is probably about to change but in both our cases returned to sort of normal. Praying for strength for both of you.

Vince

oh wow
when i go see Paul on visits, i sleep in the other room
too just because i dont want to disturb him when he finally
is down for the night. I want him to sleep as sound as possible,
since its so important to get enough sleep.
I sleep better too knowing i can move around without waking anyone
that sleeps so lightly.....

Kathy

thegirlfriend

Pumakitty said:

Kent and Hondo
You guys are the best. My dad is drinking green tea with some fruit flavors or mint. He is also a big water drinker.

My dad and mom also wanted to thank you for all of the advice. He seems to have days when he is great and postive and other days when he is not doing as good. He sits around and thinks too much. I do the same things. My mom is good about getting us both back on track.

My dad worries about me and my mom as much as we worry about him.

Hondo once my dad gets over the worse of the treatments and is able to eat. I would like to talk with you about what is a good diet. I have a very bad allergy to something. I have ended up in the emergency room many times with a life threating allergic reaction. They have no idea what I am allergic to, they think that it is a additive or preservative in processed food. Since this happened the last time we have been trying to eat more natural foods. I would like to get both of my parents eating better. My dad has improved his diet greatly over the last 6 monthes. Since this happened he has been limited in what he can eat, but has still managed to gain some weight before treatment starts.

Again, you guys are the best. I hope I am not too much of a pain. Let me know if I am.

Pumakitty
in everything you do, and everything you worry about, remember......
dont forget to breathe. Good that your mom reminds you and gets you back on track
as you say. I know that there was so much to worry about, and so many questions
that I have always had, but just never made him go over with me since I am so far away.
so I had to learn to let go of some of the worry. It was just too much.
Sort of the same lines of picking battles? When it gets to feel like tooooo much, I pick only a couple of things to think about instead of the whole gambit.
Not sure if that makes sense, but when I get crazy worried, i have to let go of some of it, set some of it aside.

Kathy