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All of you help me so much...

jenben59
Posts: 144
Joined: Jan 2009

What I've been reading helps me...I don't feel alone and the only one trying to fight this cancer. I also realize there are others who have had more severe stage 4 cancer and (forgive my ignorance) children that have severe cancer. When I think it's the end of life as I know it...I am thankful for the experienced people who share their stories and give support and advice.
I've only had my first chemo, and other than being very tired, some vomiting and a few small changes, I'm alright. I could use some advice on basic care...and please, TELL ME IF I'M GOING OVERBOARD! I'm really following the regime for mouth care, after brushing, I gargle with baking soda and water, constantly washing my hands, spray down everything with "Clorox spray" in my bathroom after I touch it...faucet, toilet, light switch, door handles. Since I live with my daughter now, who does not like to clean, I have my own paper plates, cups, cutlery and use that instead of her dishes. If I go out of my room, I wear a face mask! I did go out to the store last week and when I got in the truck I wiped down the handles, locks and steering wheel with Clorox wipes! One of the drugs I'm on lowers your immune system and I do not want to get sick and have to pospone chemo until I recover. I'm really trying to follow a healthy diet. I eat no meat. I do eat chunks of cheese, 5 vegtables a day, cottage cheese, cereal, skim milk, yogurt, and blueberry bagels. I did have a quart of my favorite chocolate ice cream, though. I'm really trying to avoid constipation and diahrrea, which so far I have. Can anyone tell me why I'm not suppose to drink coffee or anything with caffine in it?
I've got to go. I appreciate any advice. Oops! Got to spray down the keyboard now!

daydreamer110761's picture
daydreamer110761
Posts: 497
Joined: Dec 2008

I'll be on my 5th treatment next week. I think we all have to do what makes us feel comfortable. I can't stand salt water or peroxide, but only got the mouth sores once, and used orajel which was fine. I have a prescription for the magic mouthwash just in case it happens again. I have no kids that live with me, but over the holidays had grandchildren here, who both ended up sick while here. Maybe I'm not careful enough, but i just used hand sanitizer and washed my hands often. I share my desk and computer with my assistant, who has been sick for the past 2 weeks, I just make sure that before I sit down or take my gloves off in the morning I wipe everything down with alcohol swabs, door knobs and all. I still go to stores and particularly the casino, and all I use is hand sanitizer, and even then I guess I'm not careful enough, as I don't use it between slot machines. I wouldn't spray things down after I used them - just before I use them if it's known for other people touching them. You're not going to infect anyone else, it's them ya gotta worry about.

I realize the chemo thing is a bit different, but if it helps at all, I spent 9 years working in a residential facility with disabled kids (great job and I miss it). There were constant runny noses, kids spitting on you, and there was even a case of MRSA that spread through the kids. Good hand washing the key to infection control, I never got it, or brought it home to my family.

as far as food, I just eat what tastes good, and if that means a nestle crunch bar for breakfast, oh well. Usually it's a banana or a cereal fruit bar for breakfast, a salad, or lately, liverwurst with provolone on rye with mustard (I can taste it)for lunch. Normally chicken or a soup for dinner. Never ate alot of red meat anyway, but I love a good steak when I can taste it, and have also been living on baked sweet potatoes. Not sure about the caffine thing - since chemo tho I can't stand the smell of coffee (and I love coffee) so tea or hot chocolate, room temp lemonade, and when the cold throat goes away I always crave cold milk, OJ, and have been known to have a pepsi now and again. I also drink a glass or 2 of red wine in the evenings, doc said that was fine.

Good luck in your journey, keep coming back here the people are great, and you'll never be alone - even in the middle of the night when you can't sleep!

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi,
LOL to "daydreamers" comment on "you'll never be alone- even in the middle of the night when you can't sleep!"... I have posted many times at 1, 2, or even 3 in the morning because I couldn't sleep after a chemo day- whatever they gave me in the premeds (Decodron- sp?) kept me up all night. For whatever reason, I haven't had that problem lately with chemo & I've been sleeping well. But, yes, posting in the middle of the night has definitely been done by me before!

So far as your "overdoing things"... perhaps you are a bit- if it's wearing you out and you're obsessed with it constantly then, yes, I'd say you're overdoing it a bit. Of course, you want to be careful, especially in public places. I'd say wiping down grocery cart handles before using them and then wiping your hands down once in your car again- that's probably a wise thing to do- I do that also.

So far as avoiding your daughter's dishes, etc. and wearing a mask every time you leave your room, I'd say it's probably overboard, in my opinion. Now if someone's sick or sickness is going around near you, then it's a wise idea. I just think you're going to wear yourself out if you continue doing everything you're doing.

Please don't think I'm being critical- I'm just offering my advice to you. Take care of you, but don't make yourself keel over from exhaustion!

Take care and best wishes and all of God's blessings to you-
Lisa

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I'm glad you posted this, because I have no idea what to do when I start chemo soon.. one of the oncologists did tell me to avoid crowds, and sick children, anyone sick really! Your immune system will be taking a blow, but he said if I was to be around a huge crowd outside, to maybe wear a facemask..and my kids could bring germs home from other kids, so they should constantly wash their hands before touching you as well.

He made no mention of wiping down everything I touch though, we're not contagious, we should be wiping down people we been around who is sick though..and also I bought this mouthwash called "Biotene" which is supposed to help with mouth sores as well that is expensive, but it's on hand for just in case I get them, I'm glad to hear you are so far ok with the chemo, and not doing bad though, I am terrified of it.

The dr. did also say to flush twice after going to the bathroom, and if any bodily fluids like tears, blood, saliva or anything get on your sheets or towels to wash twice in hot water, and if you are throwing up to wash the basin in very hot water as well, since it is chemicals coming out of you.

I wouldn't overdo it unless I had to though wiping down everything.. other people should be doing that for you so you don't get sick, I hope you get better soon, and will look forward to you posting on how you're progressing!

~Donna

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Donna, I've never heard of flushing the toilet twice in the year and a half I've been on chemo! I wonder why no one's mentioned it to me before. Actually, I don't think anyone else is going to be touching the toilet water (unless they're cleaning, which doesn't happen often enough around my house :) ), so I wonder why that would matter. It couldn't be to help the chemicals already in thewater, cause they're already gone (makes you kind of think and wonder what's in the water going into the ocean, streams, etc.- all the meds, chemos, etc- I read an article on that once- scary!).

Does anyone else have any more info on washing things twice (even bedsheets??- why if they're washed in hot water the first time??)

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

That's just something one of the oncologists told me to do Lisa, even when you throw up in the toilet, or any kind of saliva goes around the rim, even when you brush your teeth, wipe your spit out well in and around the sink... he said the chemicals are so strong, that things should be flushed down twice, and wipe around the bowls and sink in case of getting in contact with someone else, the fumes maybe still not getting down the toilet the first time?

I'll have to ask my doctor more about it on Tuesday, I thought it kind of odd myself.

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I have to agree with the comments by the others, you need to protect yourself from others, not vice versa, so wipe down before YOU use them. The cart at the grocery store and your hands when you get back to the car after being out. I do that still and will continue doing it! As far as the caffeine, I know I couldn't ingest caffeine when I was on chemo cause it would make my heart race and I didn't feel so good! Many a time I would drink a cup during coffee hour and by the time I was in church I had to lay down in the receiving area cause I felt like I was gonna pass out. As soon as I made the connection to the coffee and cut it out I had no more of those instances!
mary

daydreamer110761's picture
daydreamer110761
Posts: 497
Joined: Dec 2008

I read in my pretty little "chemo pack" that it is wise to flush the toilet twice after using while on chemo and for 48 hours after the chemo, and close the lid. That is to prevent any chemicals from splashing or staying in there. I'm not that careful, maybe I should be. I also read on here about changing the sheets due to saliva and/or sweat. I do anyway, because I sweat alot between the decadron and menopause. But I am actually confused about the saliva thing - I mean - should Nick be afraid to kiss me?

Just a flash back - but the day my iv came apart, blood coming out of one end and chemo out of the other - the nurse instructed Nick to have me wash everywhere it went so as not to bother my skin. by the time I got there, she had called the pharmacy and found out that it won't hurt the skin, as they use a topical ointment for skin cancer (the 5FU) - I already knew that, I had called my friend (who is a pharmacist in Fla). I felt it a bit strange that the onc nurse didn't already know.

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Ok... I'm going to add my .02 worth here and it probably won't be popular with those of you who have been told by oncologists/nurses/etc. to pretty much live in a sterilized environment because your immune system will be compromised ;)

It's true that chemo can play havoc with your immune system, which means you "could" be more susceptible to colds, flu bugs (do NOT forget to get your flu shots... those are important!), strep throats, or any other bug that is floating around. Now, I say "could" because again, it affects everyone differently because we are all built differently. You know yourself how, prior to chemo, do you catch everything that's going around? If so, you probably already are careful about avoiding bugs/sick people/germs/etc. If you are robust, healthy and rarely catch anything, then chances are, you probably don't think too much about it since it has never really affected you before.

So the key here is... common sense! You know that the chemo could compromise your immune system, but you don't know to what degree... so just use common sense. For us gals, having a purse, you can carry a few supplies that might come in handy... like the bacterial wipes. These are great for when you are in public places like a grocery store... just wipe down the shopping cart handle (a lot of grocery stores actually provide the wipes now). When around children who have the sniffles... don't start kissing them (or anyone else who had the sniffles). Obviously, when in public washrooms, make sure you wash your hands, and use a paper towel to open the door when you are leaving (lots of germs on door handles).

But scrubbing down everything you touch? Or sterilizing your house and anyone else who is living in it? No need to do that. There's no need to use separate dishes, unless you are living with someone who is responsible for washing the dishes and you don't like how they wash them ... but you aren't going to catch anything from dishes that have been washed (hence, no need for you to eat off paper plates).

I lived my life the exact same way I did before chemo. Yes, I know my immune system may have been a lot weaker, on the other hand, if one overprotects themselves, they are setting up their immune system to not be able to fight anything. The one rule I did stand by was... when I was doing the box office every night at an outdoor theatre, I did not let ANYONE smoke around the box office counter. There was this one time where, at intermission, this gentleman came out of the audience area and lit up his ciggie right away, and put his drink on the box office counter. I politely asked him if he could take his ciggie elsewhere. I could see that look in his eye that basically had the question, "Hey, we ARE outside, away from all buildings... and just where do you want me to go, into the woods?" So, I explained to him that I was on chemo (indicated my pump that was attached to my belt) and that I didn't want to compromise my immune system anymore than it already was compromised. Well, you should have seen the look on his face! The man could not apologize enough... put his ciggie out right then and there. I told him he didn't have to do that... just smoke it a little further away, but he was adamant that he should not smoke anywhere in the park and that he should have known better .. should have noticed the pump, etc. We ended up having a very friendly conversation and he was in awe that I was on chemo and running the box office, but kept feeling guilty that he had lit up. I let him know that I was not at all upset with him and that he more than made up for it by putting out the ciggie and understanding.

So, hey... life goes on. We are exposed to sooooo many pollutants and what not in our day to day life that we aren't even aware of for the most part... so don't feel you have to go overboard. The last thing you want to do is alienate yourself from your family and friends... or be so vigilant that your immune system now can't function at all the minute it meets a bug :)

I also have never heard the bit about flushing the toilet twice ... yes, that is one way the body rids itself of the drug, but it's not like anyone is playing in the toilet prior to it being flushed .

Hugggggs,

Cheryl

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