New to the group and question for caregivers

amy_h414

Hi everyone, I just joined a few days ago and figured I'd introduce myself. My 38 year old husband has hpv+ oropharyngeal scc and started treatments about 2 weeks ago. His treatment is 35 rads and 6 chemo - cisplatin. So far he's doing reasonably well aside from some fatigue, discomfort in his neck, and a little nausea/heartburn. He has a PEG but isn't using it yet. He's eating most things pretty well aside from a strong aversion to onions.

My question for caregivers/spouses - how do you stay positive through all this? I am so scared for him and it breaks my heart to see him hurting. He's going to be ok, I truly believe that. I'm just afraid of the effects of the radiation. He was quite disheartened to learn of the effects to taste/saliva and the need for the PEG, but seems to have accepted it as a necessary evil. It's the unknown of this that's making me so anxious. How bad is this going to get?? How sick is he going to be? Of course there's no crystal ball to give me the answers I want but I do need to figure out how to deal with this and be there for him in whatever way he needs.

Thanks for any advice you can give me,

Amy

Tim6003

Hi Amy...the following is from my wife Jennifer, my caregiver...

Hi Amy,

I know how you feel. I just went through the same thing with my husband. At first I was asking the same things you are today. I didn't know what I was going to do or how I was going to deal with everything that was to come. It hurt my heart to see my husband hurt or be sad or be down and not be able to take it away for him or help him.

I have 5 children that I had to step in and do everything for and take care of Tim at the same time. I guess what I did was step outside my own feelings and go into this made of steel mode. I did eveything I had to do to take care of the kids and make sure Tim was taken care of at the same time. You will find you can and will do the same.

He had to stay in Boise and I had to stay in McCall, during his treatments, which is 100 miles away. It worked out where I was with him more then away. He did good for the first few weeks but then the sickness set in and he was no longer taking good care of himself.
We had his mom come (from Florida) and stay with the kids for a few days at a time which I did not like but I had to make a choice. I had to help Tim!!!

He had a very bad reaction to the Erbitux and the radiation burned his skin so bad that I was now the nurse too. I would put the cream on him and make sure his skin was staying clean. When we would be changing the bandages and he would be sitting there shaking because the pain was so bad I would be moving as fast as I could to help him and at the same time thinking I was going to die inside watching him go though this. It was a very emotional time for all of us but I found it somewhere deep inside the power to be strong for him and the kids and just keep going. We prayed alot and just held on to the Lord. I would go off and have my moments to myself and I still do today. IT'S OK!!!!

I told Tim there needs to be emotional therapy for the caregivers. When it is all over and your husband has made it through this and he leaves your side for the first time you will have a big moment of emotions and think "what now"? Then you will walk around in circles for a few days till you figue out how to get back to what your normal routine was before it all started. You will get through this. Find that strong women inside of your self and be there for your husband. You can do this:) Hold your head up!!!!

Take care,

Jennifer

Now back to me, Tim

Amy, no one can answer "how bad it will get" only because every person is different. This forum always wants to encourage, but we also don't want to pretend it's easy. The bottom line is no matter how bad it gets, you have no choice because the alternative is not an option. I was base of tongue stage III with one lymph node involved, HPV+ ...I finished my last radiation January 20th and I got my first PET /CT scan May 7th which was all clear.

It is great news your husband is HPV +. I lost my taste buds but they came back fully now (4 months post treatment). I still have some problems swallowing and there are days when I "ache" but I am sooooo much bettter now than 1 month after treatments.

You will read often that after radiation you still "cook" for soemtime ...that is true. So don't expect to get better immediately after radiation. And you will read on here where some peolple got thru issues quickly and others are still going thru issues ...

John has a great link called SUPERTHREAD he posts on here ....I wish I knew how to post it ...I hope he sees this post and provides that for you.

My wife told me to tell you to PM her if you need to talk....she can talk to you through every step.

Our prayers are with you and your husband Amy ...you will be looking back soon and saying "we came through this and are now all clear" !!!

Tim

hawk711

Tim6003 said:

Hi Amy...the following is from my wife Jennifer, my caregiver...

Hi Amy,

I know how you feel. I just went through the same thing with my husband. At first I was asking the same things you are today. I didn't know what I was going to do or how I was going to deal with everything that was to come. It hurt my heart to see my husband hurt or be sad or be down and not be able to take it away for him or help him.

I have 5 children that I had to step in and do everything for and take care of Tim at the same time. I guess what I did was step outside my own feelings and go into this made of steel mode. I did eveything I had to do to take care of the kids and make sure Tim was taken care of at the same time. You will find you can and will do the same.

He had to stay in Boise and I had to stay in McCall, during his treatments, which is 100 miles away. It worked out where I was with him more then away. He did good for the first few weeks but then the sickness set in and he was no longer taking good care of himself.
We had his mom come (from Florida) and stay with the kids for a few days at a time which I did not like but I had to make a choice. I had to help Tim!!!

He had a very bad reaction to the Erbitux and the radiation burned his skin so bad that I was now the nurse too. I would put the cream on him and make sure his skin was staying clean. When we would be changing the bandages and he would be sitting there shaking because the pain was so bad I would be moving as fast as I could to help him and at the same time thinking I was going to die inside watching him go though this. It was a very emotional time for all of us but I found it somewhere deep inside the power to be strong for him and the kids and just keep going. We prayed alot and just held on to the Lord. I would go off and have my moments to myself and I still do today. IT'S OK!!!!

I told Tim there needs to be emotional therapy for the caregivers. When it is all over and your husband has made it through this and he leaves your side for the first time you will have a big moment of emotions and think "what now"? Then you will walk around in circles for a few days till you figue out how to get back to what your normal routine was before it all started. You will get through this. Find that strong women inside of your self and be there for your husband. You can do this:) Hold your head up!!!!

Take care,

Jennifer

Now back to me, Tim

Amy, no one can answer "how bad it will get" only because every person is different. This forum always wants to encourage, but we also don't want to pretend it's easy. The bottom line is no matter how bad it gets, you have no choice because the alternative is not an option. I was base of tongue stage III with one lymph node involved, HPV+ ...I finished my last radiation January 20th and I got my first PET /CT scan May 7th which was all clear.

It is great news your husband is HPV +. I lost my taste buds but they came back fully now (4 months post treatment). I still have some problems swallowing and there are days when I "ache" but I am sooooo much bettter now than 1 month after treatments.

You will read often that after radiation you still "cook" for soemtime ...that is true. So don't expect to get better immediately after radiation. And you will read on here where some peolple got thru issues quickly and others are still going thru issues ...

John has a great link called SUPERTHREAD he posts on here ....I wish I knew how to post it ...I hope he sees this post and provides that for you.

My wife told me to tell you to PM her if you need to talk....she can talk to you through every step.

Our prayers are with you and your husband Amy ...you will be looking back soon and saying "we came through this and are now all clear" !!!

Tim

HI Amy
You must be tough and keep great notes, when he took meds, his temperature, etc. You will be his eyes and ears through this. My wife stepped up strong and just did everything. she said I didn't even know how out of it I was during the process. I had the same treatment as your husband and I won't kid you, it is rough. but I am now 26 months post treatment and doing great, with a capital G. there are some "new normal" issues, but none that I and others on this site can't handle.
So, you can cry in the bathroom, or scream in your pillow, but he needs your focus when you are making sure he eats enough or gets the correct amount through the PEG tube. He needs your mind as to when to take the meds. He needs you to drive him to appointments and to watch over him for anything suspicious.
Believe me, he will be out of it much of the time and not know what to do. He just needs to focus on eating, getting some exercise, keep the mind challenged and being as nice as possible to you. You both can do this. Trust me. You can. But it will be long days and time will seem to stop at times. When you are in need of some support, come here, call a friend or relative, have someone stop by to visit, but get it off your chest. This is a team sport, believe me...but it is winnable !!
I will be praying hard for you and all others on this site, Keep us posted and again, you both can do this. Stay strong,,,,,,Steve

jim and i

Amy, I am a caretaker too.
Amy, I am a caretaker too. It is the hardest thing I have ever done. I pray your husband has an easy time of it, my husband did not, partly due to his age. But he is clear now and we are so thankful. The best advice I can give is, Find someone who has been through the cancer caretaker role and don't be afraid to come on this board and rant, question or just read others post. I had my sister to talk to, her husband had lung cancer. I found that others really could not understand how I felt even though they were sympathetic.

I found that loneliness was the biggest problem for me because I am a social person and missed talking to someone because he slept alot. This board was a grat help to me. I went on this board everyday and sometime two or three times.

Your husband's age is in his favor. You are stronger than you think. Cry when you need to, just try to do it away from your husband. Tell others specifically what you need them to help with. And hug him alot. It helps him and you.

I will keep you both in prayer.

Debbie

Tim6003

jim and i said:

Amy, I am a caretaker too.
Amy, I am a caretaker too. It is the hardest thing I have ever done. I pray your husband has an easy time of it, my husband did not, partly due to his age. But he is clear now and we are so thankful. The best advice I can give is, Find someone who has been through the cancer caretaker role and don't be afraid to come on this board and rant, question or just read others post. I had my sister to talk to, her husband had lung cancer. I found that others really could not understand how I felt even though they were sympathetic.

I found that loneliness was the biggest problem for me because I am a social person and missed talking to someone because he slept alot. This board was a grat help to me. I went on this board everyday and sometime two or three times.

Your husband's age is in his favor. You are stronger than you think. Cry when you need to, just try to do it away from your husband. Tell others specifically what you need them to help with. And hug him alot. It helps him and you.

I will keep you both in prayer.

Debbie

Debbie ...
...it's funny you mention the sleeping a lot part ...I slept for a full month after my last radiation ...and my poor wife and kids felt so sad ...my wife was soooo lonely ...

You and Amy and my wife should PM each other ...I bet you all could tell some stories....my wife even said to me one time "there should be a support forum for caregivers afte the loved one is up and getting back to normal...

Tim

amy_h414

Tim6003 said:

Debbie ...
...it's funny you mention the sleeping a lot part ...I slept for a full month after my last radiation ...and my poor wife and kids felt so sad ...my wife was soooo lonely ...

You and Amy and my wife should PM each other ...I bet you all could tell some stories....my wife even said to me one time "there should be a support forum for caregivers afte the loved one is up and getting back to normal...

Tim

Thank you!
Thanks everyone for your support! It really is nice to hear from people who have been through it. This is all just so new to me, I don't know what to expect. Husband and I just keep saying to each other "one day at a time" because that's really all we can do. I'm trying not to think too far ahead, just to get through each day as best as we can.

I am starting to feel like a nag, though, and that's tough. He is to do the salt/soda rinse 4 times a day and doesn;t always remember, so I have to remind him. And the cream he has for his neck, that's supposed to be twice a day for right now, he forgets to do that too. I think he's getting irritated with the reminders. But really, that's just too bad. I'm not going to stop reminding him to take care of himself.

Sigh. This too shall pass....

jtl

amy_h414 said:

Thank you!
Thanks everyone for your support! It really is nice to hear from people who have been through it. This is all just so new to me, I don't know what to expect. Husband and I just keep saying to each other "one day at a time" because that's really all we can do. I'm trying not to think too far ahead, just to get through each day as best as we can.

I am starting to feel like a nag, though, and that's tough. He is to do the salt/soda rinse 4 times a day and doesn;t always remember, so I have to remind him. And the cream he has for his neck, that's supposed to be twice a day for right now, he forgets to do that too. I think he's getting irritated with the reminders. But really, that's just too bad. I'm not going to stop reminding him to take care of himself.

Sigh. This too shall pass....

The effect of treatments on
The effect of treatments on people are all over the spectrum. I really didn't need much help and that was good because my wife was helping her mother who was suffering from terminal brain cancer and she needed alot of support. I often drove myself to my treatments and I lived a relatively normal life except for a changing diet. I did not have a PEG but the food I could tolerate was a big departure from what we normally ate. This usually meant separate meals. I occasionally took a short nap after RT but I was not overly fatigued. I am retired but I could have easily worked, I continued to mow my own grass and things like that. I was going through treament during the Thanksgiving and Christmas holidays but I didn't miss a party. I think it comes down to pain tolerance and neediness on the part of the person going through this and we are all so different in that regard. Just remember there is only so much anyone can do so don't stress out and you are correct, this too shall pass. Take Care.
John

mls351w

jtl said:

The effect of treatments on
The effect of treatments on people are all over the spectrum. I really didn't need much help and that was good because my wife was helping her mother who was suffering from terminal brain cancer and she needed alot of support. I often drove myself to my treatments and I lived a relatively normal life except for a changing diet. I did not have a PEG but the food I could tolerate was a big departure from what we normally ate. This usually meant separate meals. I occasionally took a short nap after RT but I was not overly fatigued. I am retired but I could have easily worked, I continued to mow my own grass and things like that. I was going through treament during the Thanksgiving and Christmas holidays but I didn't miss a party. I think it comes down to pain tolerance and neediness on the part of the person going through this and we are all so different in that regard. Just remember there is only so much anyone can do so don't stress out and you are correct, this too shall pass. Take Care.
John

To caregivers
I cannot even begin to imagine what you guys go through. My wife was my ears for all instructions from numerous doctors and nurses. I was in oblivion. She did everything from keeping me on schedule to cleaning the crud off of my neck. I don't know if I would have survived it without her. I know that sometimes she felt helples, but she provided more strenght than she will ever know.
Here's to all of you who have the toughest job of all.

Mark S.

phrannie51

mls351w said:

To caregivers
I cannot even begin to imagine what you guys go through. My wife was my ears for all instructions from numerous doctors and nurses. I was in oblivion. She did everything from keeping me on schedule to cleaning the crud off of my neck. I don't know if I would have survived it without her. I know that sometimes she felt helples, but she provided more strenght than she will ever know.
Here's to all of you who have the toughest job of all.

Mark S.

I'm not a caregiver, but I have one.......
He doesn't feel like he does much for me......he truly has NO idea what all he has brought to me emotionally, spiritually, and physically during this bump in our road. He is always there to listen, and has a deep faith in things being just as they are supposed to be...he also has great faith in me and my abilities (which is a great booster when I'm feeling down). I could get myself to amifostine and rads everday, but I'd have to spend time sleeping off the Antivan and the anti-nausea meds in the parking lot after rads if he didn't take me.......without fail.....every single day. He drives me up there, drops me off, then picks me up again for radiation and waits till I'm done, then lets me nap on the drive home. I'm not saying it wouldn't have been doable taking myself, but his care has allowed me not to worry about logistics of driving stoned.

He cares for my dog, he does the grocery shopping, and now and then cleans my house...things I'm too tired to do a good job at. This has changed our relationship to the good...it's deepened it beyond words.

p

Tim6003

phrannie51 said:

I'm not a caregiver, but I have one.......
He doesn't feel like he does much for me......he truly has NO idea what all he has brought to me emotionally, spiritually, and physically during this bump in our road. He is always there to listen, and has a deep faith in things being just as they are supposed to be...he also has great faith in me and my abilities (which is a great booster when I'm feeling down). I could get myself to amifostine and rads everday, but I'd have to spend time sleeping off the Antivan and the anti-nausea meds in the parking lot after rads if he didn't take me.......without fail.....every single day. He drives me up there, drops me off, then picks me up again for radiation and waits till I'm done, then lets me nap on the drive home. I'm not saying it wouldn't have been doable taking myself, but his care has allowed me not to worry about logistics of driving stoned.

He cares for my dog, he does the grocery shopping, and now and then cleans my house...things I'm too tired to do a good job at. This has changed our relationship to the good...it's deepened it beyond words.

p

Hi Amy-h414
...just checking in on you and your husband to see how he and you are doing ....??

Keep us posted ...we care and we are all in this together...

Tim & Jennifer

amy_h414

Tim6003 said:

Hi Amy-h414
...just checking in on you and your husband to see how he and you are doing ....??

Keep us posted ...we care and we are all in this together...

Tim & Jennifer

Thanks for checking in! He's
Thanks for checking in! He's doing ok for now. 14 rads/3 chemo down and the lymph node is his neck is quite a bit smaller. So at least there's progress! He's not really wanting to eat because nothing tastes good, but he is still eating by mouth.

I'm doing ok too aside from worrying way too much! Almost halfway there....

Tim6003

amy_h414 said:

Thanks for checking in! He's
Thanks for checking in! He's doing ok for now. 14 rads/3 chemo down and the lymph node is his neck is quite a bit smaller. So at least there's progress! He's not really wanting to eat because nothing tastes good, but he is still eating by mouth.

I'm doing ok too aside from worrying way too much! Almost halfway there....

Half way there....
good to know ...in the world and time you are at now "ok" is not a good thing, but it's not a bad thing...it's just kind of where we are suppose to be ...and that's why its "ok" :)

Well be sure and tell him a night does not go by that I don't say prayers for you and him...your on my list ....

That's great he is still eating by mouth ...build up all you can and if he ever stops eating by mouth tel him the swallow exercises (which are not easy) really help in the recovery phase...so swallow, swallow, swallow all you can even if dry and painful.

Keep us posted.

Tim & Jennifer

Oh..and the worrying you do ...my wife said that is just fine ..you are allowed to worry as much as you want ane if anybody tells you different..you just call her and you and her will tag team them like they do in wrestling...she siad that in kind humor, just so you will know

Tim6003

amy_h414 said:

Thanks for checking in! He's
Thanks for checking in! He's doing ok for now. 14 rads/3 chemo down and the lymph node is his neck is quite a bit smaller. So at least there's progress! He's not really wanting to eat because nothing tastes good, but he is still eating by mouth.

I'm doing ok too aside from worrying way too much! Almost halfway there....

Half way there....
good to know ...in the world and time you are at now "ok" is not a good thing, but it's not a bad thing...it's just kind of where we are suppose to be ...and that's why its "ok" :)

Well be sure and tell him a night does not go by that I don't say prayers for you and him...your on my list ....

That's great he is still eating by mouth ...build up all you can and if he ever stops eating by mouth tel him the swallow exercises (which are not easy) really help in the recovery phase...so swallow, swallow, swallow all you can even if dry and painful.

Keep us posted.

Tim & Jennifer

Oh..and the worrying you do ...my wife said that is just fine ..you are allowed to worry as much as you want ane if anybody tells you different..you just call her and you and her will tag team them like they do in wrestling...she siad that in kind humor, just so you will know

Ganeva

Amy
My husband was diagnosed recently and he is almost half way through his treatment. He was diagnosed with the same hpv+oropharyngeal SCC as your husband. My thoughts and prayers are with you. My husband just started using the peg. He loves to cook eat and entertain, so this has been very difficult for him. Just today he told me he woke up feeling very angry about the cancer and other things are surfacing. I listened, and I was not sure what to say. I know this is something he is going through and it is a normal process. It is so difficult to see him hurt. He is not a complainer, however I know it is important for us to talk about this. I want some ideas also, in order to help him through this, know what to say. I know it is important for us to be there, listen and be supportive. We certainly are not able to understand, since we, at least I, have not experienced this before. I know being there for them is a big support for them. It is important to take care of ourselves. I need to work on this. Please take care of yourself throughout this. My understanding is the prognosis is good. I think 90-95%. So it appears there is an end to this. Of course for them they probably have a hard time seeing it that way since they are in the thick of things. Take care.

Ganeva

amy_h414

Ganeva said:

Amy
My husband was diagnosed recently and he is almost half way through his treatment. He was diagnosed with the same hpv+oropharyngeal SCC as your husband. My thoughts and prayers are with you. My husband just started using the peg. He loves to cook eat and entertain, so this has been very difficult for him. Just today he told me he woke up feeling very angry about the cancer and other things are surfacing. I listened, and I was not sure what to say. I know this is something he is going through and it is a normal process. It is so difficult to see him hurt. He is not a complainer, however I know it is important for us to talk about this. I want some ideas also, in order to help him through this, know what to say. I know it is important for us to be there, listen and be supportive. We certainly are not able to understand, since we, at least I, have not experienced this before. I know being there for them is a big support for them. It is important to take care of ourselves. I need to work on this. Please take care of yourself throughout this. My understanding is the prognosis is good. I think 90-95%. So it appears there is an end to this. Of course for them they probably have a hard time seeing it that way since they are in the thick of things. Take care.

Ganeva

I totally get what you're
I totally get what you're saying. I'm feeling the same way! My husband is almost half way through too. He was doing pretty well up until yesterday when the fatigue hit him hard. I think some of it is due to the fact that he's not eating well. The rad onc today encouraged him to use the tube. He's already lost some weight, they don't want him losing much more.

This too shall pass, I repeat that to myself a lot. It just seems like an eternity until the end of treatment. Sometimes i wonder how we're going to get through it all, but of course we will. We don't have a choice! He's going to be fine, I just wish it didn't have to suck so much to get to that point.

amy_h414

Ganeva said:

Amy
My husband was diagnosed recently and he is almost half way through his treatment. He was diagnosed with the same hpv+oropharyngeal SCC as your husband. My thoughts and prayers are with you. My husband just started using the peg. He loves to cook eat and entertain, so this has been very difficult for him. Just today he told me he woke up feeling very angry about the cancer and other things are surfacing. I listened, and I was not sure what to say. I know this is something he is going through and it is a normal process. It is so difficult to see him hurt. He is not a complainer, however I know it is important for us to talk about this. I want some ideas also, in order to help him through this, know what to say. I know it is important for us to be there, listen and be supportive. We certainly are not able to understand, since we, at least I, have not experienced this before. I know being there for them is a big support for them. It is important to take care of ourselves. I need to work on this. Please take care of yourself throughout this. My understanding is the prognosis is good. I think 90-95%. So it appears there is an end to this. Of course for them they probably have a hard time seeing it that way since they are in the thick of things. Take care.

Ganeva

oops
double post!