20 down,10 to go!

vickyd123 · February 2015

Hi Everyone,

10 days to go! This has been a rough ride. I can hardly look at my husband without bursting into tears at times. He has lost 20 lbs so far. The nutritionist told him he HAD to start drinking more calories. He is getting about 2600 calories a day now which I know isn’t a lot, but he has not lost any weight in the last 3 days. On top of that there is a nasty cold going around here and of course he got it. He’s been sick for a week with it and last Tuesday I took him to emerg because I was afraid he had bronchitis or pneumonia which he didn’t. He has chemo on Tuesday and they said he was still getting regardless of his cold. They already put it off a week because his counts were too low.

He has been given Liquid morphine and T3’s. He still only takes advil for pain which he says works better than the narcotics. I can tell he can hardly even swallow water without it hurting, is advil enough to get through this? I don’t want to harp on him about pain meds but it just doesn’t seem adequate? I guess I just have to let him decide what’s best for him. I already feel like I drive him crazy getting him to drink his shakes when he’s suppose to.

I also worry about how tired he seems to be. He is still battling a cold, but he seems to have to lay down every few hours. Not for long mind you, but still, it’s hard for him to stay awake for more than three hours or so.

I can’t wait for this to be over, it’s heartbreaking watching someone you love go through this…….

hwt · February 2015

Vicky

Not sure what kind of shakes your husband is drinking. If Ensure, be sure to note that Ensure has 220 calories and the same size Ensure Plus has 350 calories. I also tried not to use the narcotics but had to give in during tx. If your husband is in pain, maybe you can convince him to take one stong pain med at night and supplement during the day with Advil. glad he is nearing the end of tx.

wmc · February 2015

Getting closer every day.......

Yes it is a bumppy road to have to go down, but the reward at the end is "life changing". It's tuff on you as well. You feel his pain and it bothers you that you can't make it stop or go away. This is very hard on the caregiver and at times even worse. You're doing a great job and I'm sure he is thankfull for you.

I never new why doctors Rx tylenol#3, it never did anything for me. Now they have T4 and that will take pain away but they don't seem to like it. We all had weight loss at some time. I never had chemo or RAD but I lost weight before they found it. I went from 152 down to 128, then worked hard to get it up to 135, then got worse and droped to 126 the day of surgery. Even got into an arguement with the nutritionist in the hospital. I was on a NG tube and she wanted me to take in 280cc at each meal and push it through my nose. Not happening, I got sick anything over 150 and said that's it. I will do that three times but if I need more, put me back on 24 hrs. Then I showed her I had gained weight so "SHE WAS WRONG". I won that one. Thank god I was allowed to swallow the next day.

Just remember when the TX is over you still are cooking for a while so it will get better but it too is slow. Just one day at a time.

Bill

MGC · February 2015

wmc said:
Getting closer every day.......
Yes it is a bumppy road to have to go down, but the reward at the end is "life changing". It's tuff on you as well. You feel his pain and it bothers you that you can't make it stop or go away. This is very hard on the caregiver and at times even worse. You're doing a great job and I'm sure he is thankfull for you.

I never new why doctors Rx tylenol#3, it never did anything for me. Now they have T4 and that will take pain away but they don't seem to like it. We all had weight loss at some time. I never had chemo or RAD but I lost weight before they found it. I went from 152 down to 128, then worked hard to get it up to 135, then got worse and droped to 126 the day of surgery. Even got into an arguement with the nutritionist in the hospital. I was on a NG tube and she wanted me to take in 280cc at each meal and push it through my nose. Not happening, I got sick anything over 150 and said that's it. I will do that three times but if I need more, put me back on 24 hrs. Then I showed her I had gained weight so "SHE WAS WRONG". I won that one. Thank god I was allowed to swallow the next day.

Just remember when the TX is over you still are cooking for a while so it will get better but it too is slow. Just one day at a time.

Bill

Vicky

Liquid nutrition is ok. I did it for six months and lost 35 lbs. I felt fine just could not eat solids. There is plenty of soft foods you can eat as well. On another note, my 2nd chemo was postponed 3 weeks and my 3rd round never came because the side effects killed my ears. Also, I did not use the liquid morphine either but I did use liquid Hydrocodone syrup for about 10 days after treatment was finished. I could not not even swallow water without it. Then it all started getting better slowly but surely. That was 5 years ago. Drink plenty of fluids. This is the hard part but it does get better.

CivilMatt · February 2015

tough time

Vicky,

I would take whatever works for the pain.

If he cannot eat, he has to drink his nourishment. Most foods were so distasteful to me that I lived on smoothies and protein drinks for 7 months.

I used magic mouth wash to aid swallowing and continued to drink water and swallow.

Sleep, sleep, sleep he needs it,

Reminders from you, keep it up, he probably needs a little prodding (I did).

Best,

Matt

vickyd123 · February 2015

Thanks for the great advice.

Thanks for the great advice. The only thing he'll drink is the Ensure with extra calories and a product called Resource 2.0. 240 mls has almost 500 calories! He drinks three of those and 3 Ensures a day. Sometimes he looks at me like he hates me because I basically hound him into drinking it. I mean I know he doesn't hate me, but if looks could kill. I eat my meals in the bedroom now because I feel so guilty eating in front of him.

MGC- I'm glad to know that your chemo cancellation didn't affect anything. He was also on Cisplatin and had problems with ringing in his ears and hearing loss. Now he starts once a week carboplatin.

Matt- He is using the magic mouthwash ( here it's called Dr Akabutu's mouthwash) and he swears that's what is helping the most, other than Advil.

Thanks everyone.

lornal · February 2015

vickyd123 said:
Thanks for the great advice.
Thanks for the great advice. The only thing he'll drink is the Ensure with extra calories and a product called Resource 2.0. 240 mls has almost 500 calories! He drinks three of those and 3 Ensures a day. Sometimes he looks at me like he hates me because I basically hound him into drinking it. I mean I know he doesn't hate me, but if looks could kill. I eat my meals in the bedroom now because I feel so guilty eating in front of him.

MGC- I'm glad to know that your chemo cancellation didn't affect anything. He was also on Cisplatin and had problems with ringing in his ears and hearing loss. Now he starts once a week carboplatin.

Matt- He is using the magic mouthwash ( here it's called Dr Akabutu's mouthwash) and he swears that's what is helping the most, other than Advil.

Thanks everyone.

Sleeping

Don't worry about him wanting to sleep all the time.

When I got to this stage, I was sleeping probably 21 hours a day when I wasn't at the hosptial for treatment.

I'd get up in the morning, "eat" something (not really, but I tried), lay down on the couch and fall asleep until lunch. "ate" again, and then slept. Same for dinner. then i'd get up around 9:00 or so, take a sleeping pill, sit on the recliner, and sleep for the night.

Days there weren't treatment it was really tough, because you aren't "doing" something - so sleep it was.

I had cisplatin - all three treatments, did lose my hearing. I just picked up my 2nd pair of hearing aids on Monday, the first lasted 7 years. I also have the ringing - still. I take tylenol PM or benedryl (antihistimine - not decongestant) every night for the last 7 years.

I didn't eat or drink anywhere near what I should have. I eneded up getting hydration for a month+ after treatment through an IV. I finally went to the primary care doctor - a new one - and he immediately put me on anti-depressants. It wasn't until I started taking them did I finally start healing. I wish I had them earlier.

Lorna 2007 & 2014

debbiejeanne · February 2015

finally, you can now see the

finally, you can now see the light at the end of the tunnel!!! super. those 10 days will pass very quickly and then he can begin the next stage of the game, healing! being tired is to be expected, especially since he is also fighting a cold. as for the pain, i don't kown, i never had the pain. i'm praying that the pain stays under control and he moves smoothly to the next stage. we will be waiting to hear him ring the bell so we can do the "happy dance" in his honor.

God bless you both.

dj

vickyd123 · February 2015

debbiejeanne said:
finally, you can now see the
finally, you can now see the light at the end of the tunnel!!! super. those 10 days will pass very quickly and then he can begin the next stage of the game, healing! being tired is to be expected, especially since he is also fighting a cold. as for the pain, i don't kown, i never had the pain. i'm praying that the pain stays under control and he moves smoothly to the next stage. we will be waiting to hear him ring the bell so we can do the "happy dance" in his honor.

God bless you both.

dj

You said you had no pain with

You said you had no pain with the radiation? That's really amazing! So maybe him taking just the advil isn't all that surprising. The rad onc made it sound like there was no way he would get through the rads with just advil. He really has trouble swallowing anything at all, but he says if he's just sitting there the pain is tolerable, BUT there is definitely pain.

At first he said he wasn't ringing the bell, now he says he will and my whole family, kids and grandkids will be there!

avisemi · February 2015

Vicky,
I could have written

Vicky,

I could have written parts of your post. My husband finished radiation a week ago. The last 2 weeks seemed the hardest since we seemed so close but still had to go through it. I have to do the same pushing so I know how tiring it is.

we use boost VHC (very high calorie), 8oz have 530 calories. It was the best thing we could find. This way we only do 4 cans a day. I buy it through Amazon.

Be encouraged! take a minute to feel proud of all the hard work you are doing. You are helping him more than you probably even realize. And then, take another minute to rest. I have tried to find time for myself. This is very important for me since it is my prayer time. to be honest, it isn't easy to find such time with a baby, a toddler and a full time job. But I try and it helps me a lot.

Sending you strenght, energy and positive energy.

20 down,10 to go!

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