The dreaded week III

NJShore

Well, today is the last day of week 2 of treatments, 10 rads done, and 2 chemos (23 and 4 to go). And, week three has started - everything they told us it would be is happening now. Over the weekend Dan's throat started to bloom with mucositis - he can't swallow the Mugard - it gives him stomach aches. The ENT said today that the yeast infection will be next - just in time for the holidays. Today he starts physical therapy for his left shoulder (a result of some surgery atrophy in the shoulder). He finally feels a bit better from chemo from last Wednesday.. only in time for Wednesday.

I think the hardest part of being the caretaker is that besides reminding of him of schedules, meds, lotions, keeping everything clean around him and making foods readily available (many flavors and textures)I can't make it better. It just makes me feel helpless.

I just needed to vent today - it must be the effect of a rainy monday morning. If you all have suggestions for me of things that comforted you that doesn't come from a pharmacy (I think I could open one now!) -- but anything I can do for him.. please give me a hint.

Hope you are all having a better week...

Kari

fisrpotpe

for me
for me the helps were

- everyone around me did not have a sad face one or frustrated face

- getting snail cards, it wasn't for me what the card said or what the person wrote.... it was that somebody cared to take time just to say they cared

- nothing better than IV fluids every other day or daily, but what a huge change in many ways for me just to get the fluids.

those are my top three

how to do it is not that hard, vent to friends, us other family but do not come accross down to your fighter. tell everyone visiting to be up beat.

- just ask friends to send cards.... asking for help is hard, but it is a must for the caregiver. let people do things when they ask

CivilMatt

did she say week 3?
Kari,

For me, the middle of week 3 was my last hamburger and the real start of the gagging, spitting, choking and dry heaves. For me it was a dedicated utility room sink and endless supplies of Kleenex. It will sound awful to you, but as long as he is handling it, he’s ok.

Have lots of salt and soda mixture ready (I had a ½ gallon always ready) and drink lots of water, lots. For me it was the start of my love affair with Magic Mouth Wash, it worked wonders for me. Keep the nurses informed on all new side effects, they have seen it before and are waiting for you to tell them.

The home pharmacy is critical to have, you can not have to much.

A warm blanket and my recliner was my favorite hang out (between bouts of craziness). Hopefully, his side effects will be mild and few.

Best,

Matt

Oh yeah, venting is always welcome, we don’t want to have you blow up.

phrannie51

Number 1 for me...
was sleep...I slept in my recliner on and off all day (and sometimes stayed there thru the night)...

Number 2 was my concoctions...the salt/soda/water and the L-Glutamine/water mixes...I know you said not to mention any pharmacuticals...but it they were threatening me with thrush (yeast infection), I'd want Diflucon sitting on my counter. No reason in the world to suffer thru that until it gets filled.

Number 3 - for a long time something that I could warm up and eat at will...soup usually...my sister made Caulaflower and Cheese soup every week...and also made some Magic Mineral broth for me and froze it...I couldn't do this the last 3 months of treatment, but I sure did during radiation.

You are only helpless when it comes to "doing it for him"...but I can tell you, it's wonderful to have someone take care of stuff, no matter how large or small, when you feel so whimpy...There are no more shared tasks...you are doing all of it alone...and that really takes a load off the sick person.

p

AJW1966

yup
pretty much right on track. Start of week 3 was the last time i could really taste anything.
I didn't swallow the mugard even though they said it's safe. Didn't want to aggravate the belly any more than it already was. The yeast infection may or may not happen. Lets hope not so its one less thing to be frustrated over.
My wife had that totally helpless feeling too because there was nothing she could do. I just asked her to hold my hand, hug/hold me and pray for me. I think just having her there next to me was more than enough.
Sounds like your doing the right things.
Always remember....this is temporary.

Alan

Tim6003

AJW1966 said:

yup
pretty much right on track. Start of week 3 was the last time i could really taste anything.
I didn't swallow the mugard even though they said it's safe. Didn't want to aggravate the belly any more than it already was. The yeast infection may or may not happen. Lets hope not so its one less thing to be frustrated over.
My wife had that totally helpless feeling too because there was nothing she could do. I just asked her to hold my hand, hug/hold me and pray for me. I think just having her there next to me was more than enough.
Sounds like your doing the right things.
Always remember....this is temporary.

Alan

Your doing just what you should and a fine job
Kari....

My wife was my comfort and peace...I declare your words sounded just like she did well after treatments and she was describing how she felt...but I have to tell you like I told her..."honey, you have no idea how much I leaned on you during that time though I could not express it" ...trust me Kari...you said a mouthful when you said, keeping things clean, food available, schedules and on and on ....he see's it and feels it and it makes a difference even though you feel helpless. of course you do ...you love him and have to watch it all in front of you.

Looking back I often think the caregiver has it worst...while I "laid around and tried to get well" she was running around like a chicken with her head cut off....and I'm not the easiest patient to hear my wife tell it

Hang in there.....you are making a HUGE difference!!

Best,

Tim

Billie67

Tim6003 said:

Your doing just what you should and a fine job
Kari....

My wife was my comfort and peace...I declare your words sounded just like she did well after treatments and she was describing how she felt...but I have to tell you like I told her..."honey, you have no idea how much I leaned on you during that time though I could not express it" ...trust me Kari...you said a mouthful when you said, keeping things clean, food available, schedules and on and on ....he see's it and feels it and it makes a difference even though you feel helpless. of course you do ...you love him and have to watch it all in front of you.

Looking back I often think the caregiver has it worst...while I "laid around and tried to get well" she was running around like a chicken with her head cut off....and I'm not the easiest patient to hear my wife tell it

Hang in there.....you are making a HUGE difference!!

Best,

Tim

Phrannie said it...
Get some diflucan on hand incase he does get thrush, it works pretty quickly and you don't want to have to wait around for it. I also could eat most cream soups still in my 3rd week but things were beginning to taste very very salty! I sipped on soda or soda water and we have a margarita~ville blender so my husband would blend up ice and I would suck on that. It would be like slushy ice and it felt good on my throat. Magic mouthwash was my saving grace also.
I passed the time in my recliner by either sleeping or watching funny movies or recorded sitcoms. I also tortured myself, I was addicted to the cooking shows! I would watch it for hours, I look back now and think I must have been out of my mind.
Visitors were nice too but as others have said, no sad faces.
Keep lots of tissues and maybe a bucket or little trashcan around for him to spit in, that part was so annoying.
Mucinex seemed to help a little for me. Not a huge help but enough that I used it a few times.
Lastly, I know this sounds weird but I was on fentanyl patches and dilaudid for break thru pain. I found that when I took the dilaudid a lot of that mucous dried up and I got lots of relief until it was time for the next dose. I must admit, I even took it sometimes when the pain wasn't horrible but just to help dry me up.
I hope this helps a little. Praying that the 3 rd week goes smoothly.
Billie

NJShore

Thrush.. So soon!
Thank you all for the encouragement... I needed it.. It is so hard to see my husband hurt. We've only been married for two years, and we will forever be in the honeymoon stage I swear! Might be what happens when we married with both our hearts and our heads engaged!

So we went to radiation this morning, since yesterday, he's developed thrush.. His pain level has jumped from a 3ish.. To a full 7 or 8. The gave him a prescription for magic mouthwash with the medicine for thrush in it.. And he's taking the pain meds now.

After watching him give up on eggs.. And wince (big winces) at pancakes.. I am hoping the pain meds allow him to eat. He's attempting to get away without a peg. He also lost 5 lbs in the last week, and the doctor isn't happy. The good news is he's well hydrated!

His mouth was clear from ulceration s, but the thrush moved from his throat and now the roof of his mouth. I cut up a watermelon and can't elope today -- I think we are going to need them.

Hope ya'll are having a better day!

Kari