Hello to All! & Dealing with the Heat

[DayLyn]

Hi everyone!  I've not been on the boards in quite some time.  I have 15 1/2 weeks to go, and suddenly I feel like I've hit a brick wall.

I had a really tough time around the 8-12 week mark, and then felt like I maybe was just going to sail through the rest of treatment, but, no.....

I've got sores in my mouth, and severe insomnia, and the heat - my gosh.  It's been between 33 and 38 degrees celcius here, and it's unbearable.  It seems like the heat just makes everything else so much worse.  And it brings on the nausea - BAD.  My headaches are back and I'm getting pain behind my eyeballs again.... :(

Just wanted to share, and vent a little, and maybe someone's got a few tips on how to get through these next 15 weeks?

Day

[debnevada]

I think I might be the mouth sore expert round here.

I've had 'em since early on and still do.  I have magic mouthwash from my hep doc.  If none of your docs know what it is, ask your pharmacist....they make this stuff up all the time.

Another suggestion from my doc was acyclovir....which is for herpes (thankfully i don't have it) but they are finding it useful for significant mouth sores with tx.

insomnia is me too.



that's what i know.....

[Lonestar823]

Oh, Daylyn, I know that wall you're talking about.  Reading your post early this morning brought me right back there.  Back there to a place I'd like not to remember but know I always will.  Fifteen and a half weeks to go?  I had to really withdraw at this point.  If you're able to stay at home, do it.  The few hours a day where I had any energy I totally de cluttered my home. Don't know if others felt like I did but I couldn't bare to look at too much stuff.  My poor brain just couldn't take it all in.  I set up separate sleeping quarters in a quiet part of my house.  Baths helped.  I couldn't stand in the shower and so my husband bought me a shower bench. He put a tiny fridge for meds and water in my room, with a lap top, a tv and a phone.  Not that I could concentrate on tv or a computer at this point but staring blankly at them somehow helped. ; ]  He also helped me to keep clean sheets on my bed every day.  I finished last August and it was a hot one.  For me there were periods where all I did was sleep then periods of no sleep so I stopped looking at the clock.  I just gave in to what my body wanted to do. The itchiness had either subsided or I just given in to that too, I'm not sure but I used the gold bond powder after every bath or shower.  Sometimes I bathed three times a day.  I couldn't manage dealing with my hair either and so I would comb it straight back out of my face and clip it while it was still wet.  The magic mouth wash Deborah speaks of really works.  I didn't get the mouth sores really bad but I had them.  Any salt would make them worse.  I used orajell too.  This is the point I finally found this web site.  I couldn't post because my brain fog was so bad but reading the posts from others somehow got me through.  I hope this helps Daylyn.  Basically I had to just simplify, simplify and then it was done.  I was feeling better within two weeks and by eight weeks Yippie Ki O, I could stand on one foot without falling over and dry the toes on the other just out of the shower! ; ]  Hang in there Daylyn.

[nygirl7]

Daylyn we can all relate about just wanting to VENT!  It seems that the people at home get really really tired of us 'venting' don't they? They just can't seem to grasp how difficult it really is - even though they can be understanding...so vent away to us.

I just made the mistake of moving this week - let me tell you under no circumstances should anyone ever move the first week of July, what a MISTAKE!  It was just too hot and with the doors opening all the time forget about A/C.

Like Lonestar, I found taking nice cold baths really helped. Showers just didn't cool down the body temp enough...I had to pretend I was swimming in the tub and just get in the ice cold water.  Oddly enough, I live right on the ocean so I could have gone there if I had time!

I'm sorry about your tongue/mouth sores. I had them really really really bad during all 72 weeks of treatment. They started immediately and never left and it was so painful ugh. I never found anything to really work unfortunately or I'd tell you right away - mine must have been mutant or something cause the ONLY thing that got rid of them was stopping the IFN.  A week after tx was over there were gone for good and I actually had spit back in my mouth. Boy oh boy I never knew how important spit really is!

Oh well...that's a lie...I found ice cream sure helped ;)  They made my tongue sores feel SO much better!

Anyway, just try and take it easy as you can. There will be good spurts of time and those that are not. Just remember to make time for yourself and rest all that you can. REST is CRUCIAL!

Remember - vent when you need to ... that's the best thing about this forum, everybody understands!!!!!!!!!!!!!!!!!!!!!

Debby

[l-horn]

Acyclovir works but a home remedy that works somewhat is childrens cough syrup with liquid benedryl mixxed with mallox and swirl that around in your mouth.  Mmmmmm ....doesn't that sound tasty !!

I haven't had that problem for the most part but I do have the hairpiece so I always have acyclovir on hand. I haven't had an outbreak in months so I was kinda hopin' the cure would kill my herpes virus but I was told that ain't gonna happen.

I think just for laughs I'm gonna go fill out an application on match.com and see what ebola infested monkey they hook me up with.

I can see it now: male unemployed, currently under treatment for hepatitis C, herpes simplex 11, smoker, ex-addict.



......waiting for matches

match.com has found 1 match for you:

Name: Chaquita the circus monkey
Loc: Currently in Akron, Ohio
Age: 9
Interests: Hurling poo at small children.
Favorite Food: Bananas, Kiwi, boogers.
Favorite Music: Anything by Pepe' the organ grinder.
Smoker: I eat cigarettes
Favorite drink: My own urine

Yup ....I'm a real catch.

[GrandmaA]

I wrote what I take for insomnia above under Deb (her question).

Weather extremes bother me a lot also - too hot or too cold. So I'm getting new dual pane windows on Mon. with low e glass and Suncoat max. Even sound proof for the slider in my bedroom. It will be a big upgrade for my little home. It will never be more than 82 in my home after that. My son got the windows last Dec. and they make a huge difference. He researched them thoroughly so I didn't have to.

I have never had sores in my mouth, probably because I'm on some of Dr. Zhang herbs. I have no itching or rash either.

Tomorrow I will only have 7 weeks left. THANK GOD. Best wishes to you. You are most welcome to vent here anytime. My son is so tired of hearing about my liver I don't even talk about it anymore.

[mustangshelly]

hang in there!! I have the mouth sores on and off too, the heat does a number on us!  I found that if I eat alot of fresh tomatoes I guess the acidity helps fuel the sores? I started rinsing with warm water and sea salt and it helps but by no way is a cure. I often wondered if the sore on the one side of the mouth is perhaps me drooling in my sleep? lmao, but seriously I pass out sometimes and wake up to all kinds of weird s*it in bed with me ...I had a box of frootloops as my partner last night and I have this weird blue green slime on my sheets hmmm.. I only have as of tomarrow 2 of 72 left so it does get tough at times..just take it one day at a time...

nygirl....your back!!!!! I was looking for you to post, how did your move go?? I can agree with you about not moving in the heat...really bad...luckily I had alot of help and the new place has central so I cranked that baby up!!!!   I just put in the essentials and the rest is in the garage waiting...and it will wait until I feel up to it..moving takes its toll...so glad to hear from you...how are YOU doing?

[DayLyn]

Well, I must say, getting out of bed this morning was nothing short of painful.

Lucky me, we hit record breaking highs here yesterday - 38.8 degrees.  No sleep for me last night again, and I just want to lay down and sob.

I'm really feeling DONE.

All of your responses were wonderful, and I feel like I've got a whole roomfull of people behind me cheering me on.  I really do need that - so thanks guys.

I feel like I just can't tell the people around me anything - they're just sick of hearing it.  My sister in particular loves to roll her eyes, and ALWAYS comes back with " you think you're (tired/sore/sad) - you should hear about my day.  (working part time, going to the beach with the kids, standing up for more than 10 minutes without feeling exhausted)  Boo- F*cking Hoo.

Thanks for the mouth sore suggestions - I'm calling my pharmacist today.

Grandma, I-horn, lonestar and child - you are all amazing people, and I appreciate your feedback.

I- horn - thanks!  I needed the laugh.  Was giggling between the sobs.  

Shelly & NYGirl - you girls are my inspiration.  I feel like a total whiner compared to what you two have gone through.  In the back of my mind, I keep telling myself - if they can get through 72 weeks, I can get through the next 15 weeks.  


Long story short -  I NEED you guys.  So... thanks.

[jools57]

you just keep on hanging on, and vent away...i was venting today, and everyone is soooo awesome....there are some people who just dont realize that these meds are brutal...so many sx, and well all that goes with that...they dont realize we are doing chemotherapy...i hope your pharmacist can get you hooked up with that mouthwash fast, and that you feel better soon...
blessings to you

[geterdone]

I was alright and even the brain was working for a change but it is still early here and reading down the page and you reply relating to your sister was the topper. LMAO and still chuckling. I haven’t any problems with mouth sores per say but from week 5 the tongue feels like acid being dropped on it with certain food and drink. Anyway, liked your comment. LOL
jasper

[susan400]

[susan400]

I deal with the heat by staying in the A/C.  It's a must for me in FL., I couldn't do without it.  I'm definitely 'not' a green machine.  As far as going into a pool, or the beach, I can't do that because my skin issues keep me from tolerating the sun.  So, ALL of my activities have to be indoors in A/C.   Even though, I'm not on treatment as of last week, I still drink a lot of water.

Susan

[ladybug52]

So sorry to hear the heat is kickin your butt! Tx + summer=misery. I know that sometimes there's no way around it, but I timed mine to coincide with the winter months, and sweated everyday anyhow.
Are you still working? Your sister sounds like a piece of work. At the time when you need support the most, she's going to compare her life to yours! I would definitely avoid her while on riba! I can't imagine having the mouth sores. My tongue was always sore and felt like I had burnt it on hot pizza. I drank water all the time, but I would still wake up with a mouth full of cotton. Better to have cotton mouth than sores tho. I feel for you.
Do you like any juices? I loved to sip on water-down juice to curb my nausea. I'm sure you've tried cold rags for your head, have you talked to to your dr about this?
Take care, hope you have a restful weekend. Still traveling??
Hugs and sympathy,
Bug

[DayLyn]

Thanks for the post - it means alot to me.  How are you doing?

I have an appt to see the Doctor this week.  I talked to the pharmacist about a mouthwash for my sores, but need to see Dr to get a script.

I've been drinking gatorade to keep myself hydrated.  The stuff just tastes gross to me.  The pharmacist just recommended Pedialite - a drink for infants who are dehydrated.  Not pleasant.  But I did find Pedialite Popcycles, which are pretty good!

Our heatwave is apparently over, and we may get rain this week! Yay!  And no - no more travelling until September.  I've put my foot down.  I am done.

As for my sister - she's not real smart.  She called me to complain about her evening at 7 am on Saturday morning.  Less than 12 hours after I took my shot and about 3 hours after I finally got to sleep.  Talk about Riba Rage......

It kinda sounded like this (calm at first, but rising to a high pitched gremlin like voice):  "I know you had a bad day, I feel badly about that.  Now if you wouldn't mind, It's 40 degrees in here and I took another shot of chemo last night, and I have only had 3 hours sleep, and I really don't like being woken up at 7 am, and I better get off this phone and go back to sleep before I really say something that I'm going to regret because right now I'm thinking about ripping your head right off - kay?  Love ya, bye"

Then I went out back and took a baseball bat to my favorite tree.  :(

This is my life!

Hugs;
Day

[jools57]

Hang in there DayLyn!!...How's your tree doing???...at least you took the bat to the tree and not your sister!LOL...i use ladybugs advice for the watered down juice...makes the water go down that much better...wishing you all the best!..
Blessings, J

[DayLyn]

Thanks for the note - you are so kind.  

I'm feeling better, and my tree, although a little worse for wear, is still alive (albeit barely).

How are YOU?

Daylyn

[jools57]

I'm hanging in there...experiencing some depression, mainly because of homelife not being the best right now...this too will pass...hard to keep calm sometimes on all these meds!!LOL...i'm glad you are feeling better...i'll be keeping you in my prayers, Blessings, J