Hi, new here, I start chemo and radiation monday

Froggy32

Salsify said:

Hi Froggy, just want to wish

Hi Froggy, just want to wish you good luck as you start treatment! Lots of good advice to be found here, and support. The doctors never discussed staging with me, the main issue was determining if it was rectal (adenocarcinoma) or anal (squamous cell carcinoma) because of the location. And I was quite relieved that it was squamous cell because that meant I would not be getting an ostomy bag and the survival rates were really good. And it was passing blood and mucous that got me to get my butt checked in the first place, too, in September 2015. I am only 63 so... gotta get ready for work! I will be thinking of you and checking back.

Sally

Salsify

yes, that is what they said about mine. They talked about doing the surgery, but decided against it. I am glad I didn't want to have to that. Thanks for the well wishes. I am nervous. But I just have to do what I gotta do! My hubby will be 70 in a couple of months and has only has 35% of his heart working from a heart attack he had 5 yrs ago. So he needs me around, as much as I need him. 

Froggy32

Salsify said:

Squirt bottles!

Not spray bottles, peri-bottles. A few weeks into treatment things got uncomfortable down there and I did not want to wipe, blotting was it. So I had one bottle with a weak baby soap solution for after BMs and plain water in the other for rinsing and for urinating. I was still working so I couldn't do a lot of tub soaks. 

Sally

Ok

will the squirt bottles, like you use for condiments work? I have a new package of them, that I bought to use for my candy, but still haven't used.

Salsify

Froggy32 said:

Ok

will the squirt bottles, like you use for condiments work? I have a new package of them, that I bought to use for my candy, but still haven't used.

Bottles

Can't see why they wouldn't work, as long as you can squeeze them!

Froggy32

I had my pic line put in this morning

They forgot to tell me that I had an appointment for it at 9:00 am and called at 9:15 to remind me. It takes me almost an hour to get to the hospital. So luckily I had already showered and was ready to go. So we get there at 10:30 and get in there and do it. Evidently someone messed up, because there was another woman there they did the same thing to. 

So we get out of there, head over to the cancer center for my appt that was at noon for chemo. They send me back to the drs office instead. I was in the waiting room for an hour then sat in the little room waiting to see my dr until almost 2 when he finally comes in and sees me for a whole 5 minutes. Then head over to the chemo center finally, get all of that stuff taken care of. I now have a cute little fanny pack (as my daughter said, a fanny pack for your fanny problems) with 5FU drugs in it until next Monday. Then get in the radiation depart meant at  3:00. My appt there was supposed to be at 12:30. We finally made it back home at 5:30.  I am worn out. Thanks for all of your support.

 

Salsify

Froggy32 said:

I had my pic line put in this morning

They forgot to tell me that I had an appointment for it at 9:00 am and called at 9:15 to remind me. It takes me almost an hour to get to the hospital. So luckily I had already showered and was ready to go. So we get there at 10:30 and get in there and do it. Evidently someone messed up, because there was another woman there they did the same thing to. 

So we get out of there, head over to the cancer center for my appt that was at noon for chemo. They send me back to the drs office instead. I was in the waiting room for an hour then sat in the little room waiting to see my dr until almost 2 when he finally comes in and sees me for a whole 5 minutes. Then head over to the chemo center finally, get all of that stuff taken care of. I now have a cute little fanny pack (as my daughter said, a fanny pack for your fanny problems) with 5FU drugs in it until next Monday. Then get in the radiation depart meant at  3:00. My appt there was supposed to be at 12:30. We finally made it back home at 5:30.  I am worn out. Thanks for all of your support.

 

First day of treatment

Thank you for update, at work today I was sneaking peeks hoping to see how it went. I'll bet you were worn out - what a day you had! Love your daughter's humor, though! Hope things go more smoothly from here on.

mp327

Froggy32

Although your treatment may have gotten off to a rocky start, I hope the rest will go much more smoothly.  I hope you were able to get some rest last night.  You will get through this--just take it one day at a time!

Froggy32

Thanks.

Yeah, it was a long day. Hopefully we won't have to have another day like that. I just have the radiation today. Plus we are meeting the financial advisor, to see what kind of help they offer. The nurs we talked with yesterday said something about helping with gas or transportation, if we need it.

last night my stepdaughter was getting all freaked out about this chemo. She looked it up and saw some stuff about testing for enzymes. That is could kill you if your enzymes weren't right or something like that.

 I told her that I would look it up. 

I had a hard time getting to sleep. Trying to figure out where to have this bag. I finally got an idea, I have this neck pillow and the pack fits right in it. Then I can rest my arm on top of it.  

Froggy32

Thanks.

oops

Mollymaude

Froggy

welcome to the site, and sorry you have to be here. You did have a very long day yesterday. The rest of the week will be easier because you just have radiation and for me they had that so it was in and out 20 minutes total most days. I hated the fanny pack. And like you it was worst when I slept. At least it's only for five days. Hope the rest of your week goes smoothly.

Froggy32

Mollymaude said:

Froggy

welcome to the site, and sorry you have to be here. You did have a very long day yesterday. The rest of the week will be easier because you just have radiation and for me they had that so it was in and out 20 minutes total most days. I hated the fanny pack. And like you it was worst when I slept. At least it's only for five days. Hope the rest of your week goes smoothly.

Mollymaude

Did you only have the chemo for 1 round? I don't know how long I have to have it. She said that next Monday, they will check to see how it is going and give me another dose if needed. 

Wisteria83

Froggy32 said:

Thank you wisteria

I appreciate the lists and all of the advice.  I have been using depends for a few years off and on. I have IBS and OAB, so sometimes I never knew when it was going to hit me. I have been on disability for 3 years because of it and a few other things. So I know all about that.  I have a bedside potty, I may have to put in here if it really gets bad. My husband and I live in a big old house, just the 2 of us. But my oldest daughter is only about 50 miles away. The other ones are 100 miles away and stay busy all of the time.  I have had offers from my cousins and friends to come over and help me if I need them, so I think I will be fine.

I will make a point to check on that list. I already have a stash of pads and depends. And since I had to have my teeth pulled the other day, I have bought ensure and trying out different drinks like that.. Thanks again

 

Offers from friends

Definitely take them up on their offers of help.  If they want to drive you...let them drive you.  Prepare a meal?  Absolutely!  Even just visit to watch a movie to take your mind off things for a bit.

I was living on Boost and Ensure, and that's not cheap.  I was lucky that the nutritionist gave me a dozen or so freebies every week plus $3.00 off coupons for the stuff!  Don't be shy about asking.  Cancer treatment isn't cheap, so every little bit helps.

During the last couple weeks of treatment, my days and nights were getting mixed up.  I was taking one or two baths in the middle of the night just for comfort.  When your dr. offers you pain meds, take them!  And make sure to tell them if they aren't working.  Also, take them around the clock.  It's harder to get a handle on your pain if you let them out of your system.  Same with the meds for nausea.

My kids live nearly 800 miles away...except for one who is only 40 minutes, but I kind of kept them at arms length because I didn't want to worry them and didn't want them seeing me at my worst.  I know...vanity, I guess.  My daughter flew down for a week because she needed "Mom time."  I warned her that I wouldn't be any fun, but that's not why she came anyway.  Turns out, she had a nice relaxing week for herself, so it was win/win.  She's a teacher, and going for her Master's, so she had homework to do and kept plenty busy.

My husband hired a cleaner to come every other week to do household cleaning.  That relieved a lot of my stress, although it was weird to get used to someone else cleaning my house while I just sat there.  My husband was doing everything else...and I mean everything.  Shopping, cooking, plus all the outside chores AND driving me to every appointment.  I spent more time in my bathroom than anywhere else.

Your bedside potty sounds like a great idea.  There were times when I sure could have used one.  I had to have one a a couple weeks ago when I was in hospital, because I was so weak and had no time to dally to get to the toilet.  It was great for me...not so much for the nurses though.

Treatment takes a lot out of you, so feel no guilt if you want to nap.  This is a time when it's really all about YOU.  Take care of yourself and let others take care of you too.  People want to help because they care about you and feel the need to contribute to your wellbeing.  Only you know how you feel and what you need.  Let them know what they can do to help you.  

Keep us updated on your treatment progress...we all care.

Hugs,

~Wis

 

Froggy32

Wisteria83 said:

Offers from friends

Definitely take them up on their offers of help.  If they want to drive you...let them drive you.  Prepare a meal?  Absolutely!  Even just visit to watch a movie to take your mind off things for a bit.

I was living on Boost and Ensure, and that's not cheap.  I was lucky that the nutritionist gave me a dozen or so freebies every week plus $3.00 off coupons for the stuff!  Don't be shy about asking.  Cancer treatment isn't cheap, so every little bit helps.

During the last couple weeks of treatment, my days and nights were getting mixed up.  I was taking one or two baths in the middle of the night just for comfort.  When your dr. offers you pain meds, take them!  And make sure to tell them if they aren't working.  Also, take them around the clock.  It's harder to get a handle on your pain if you let them out of your system.  Same with the meds for nausea.

My kids live nearly 800 miles away...except for one who is only 40 minutes, but I kind of kept them at arms length because I didn't want to worry them and didn't want them seeing me at my worst.  I know...vanity, I guess.  My daughter flew down for a week because she needed "Mom time."  I warned her that I wouldn't be any fun, but that's not why she came anyway.  Turns out, she had a nice relaxing week for herself, so it was win/win.  She's a teacher, and going for her Master's, so she had homework to do and kept plenty busy.

My husband hired a cleaner to come every other week to do household cleaning.  That relieved a lot of my stress, although it was weird to get used to someone else cleaning my house while I just sat there.  My husband was doing everything else...and I mean everything.  Shopping, cooking, plus all the outside chores AND driving me to every appointment.  I spent more time in my bathroom than anywhere else.

Your bedside potty sounds like a great idea.  There were times when I sure could have used one.  I had to have one a a couple weeks ago when I was in hospital, because I was so weak and had no time to dally to get to the toilet.  It was great for me...not so much for the nurses though.

Treatment takes a lot out of you, so feel no guilt if you want to nap.  This is a time when it's really all about YOU.  Take care of yourself and let others take care of you too.  People want to help because they care about you and feel the need to contribute to your wellbeing.  Only you know how you feel and what you need.  Let them know what they can do to help you.  

Keep us updated on your treatment progress...we all care.

Hugs,

~Wis

 

Thanks.

I will definitely take them up on it. Right now, I am feeling ok. A little nausous. I just drank an ensure and isn't sitting real well.  Other than I haven't had anything else.  

Salsify

Chemo

Hi Froggy,

I think the usual treatment protocol is 2 rounds of chemo, the first and fifth weeks of six weeks of radiation, although my second round of chemo was that last week instead of second last week, but my scans have been clear, so it worked anyway! My treatment ended December 14, 2015. Both rounds started with mitomycin followed by 96 hours of 5FU. Since I had no one at home to help and because I would have been expected to be at work, I was happy my doctor hospitalizes his patients for the chemo. And even though it meant getting the picc line in twice, I was glad he does not leave it in during the weeks of no chemo. From what I can tell that is not most common though. Hang in, this will be over before you know it.

Sally

Mollymaude

Froggy

Sally is right, the protocol is two rounds of chemo which is what I had. Six weeks of radiation five days a week except I had my radiation over the holidays and had two four day weeks so to get all thirty treatments in I had to go into a seventh week. I also missed a treatment because the radiation machine was down. So that put me out three days into a seventh week. Hope you had a good day today.

Froggy32

Mollymaude said:

Froggy

Sally is right, the protocol is two rounds of chemo which is what I had. Six weeks of radiation five days a week except I had my radiation over the holidays and had two four day weeks so to get all thirty treatments in I had to go into a seventh week. I also missed a treatment because the radiation machine was down. So that put me out three days into a seventh week. Hope you had a good day today.

Mollymaude

thanks. Yes I had a pretty good day today. Just the radiation, in and out pretty fast. It is just such a long trip for us. We are 50 miles away from our treatment center. So it takes us a good hour just to get there and then another hour back.  We went out to lunch and then to the grocery store. kroger had pampers baby wipes on sale for $1.00 a box if you get 5 items on the sale list. And ensure was on sale for 6.99 a 6 pack. I had 3 coupons for $3.00 off each one. So I bought some of that too. Stocking up on things I will need. Thanks for the tips everyone.  Gotta head back today at 12:30  and see the nurse today. My schedule is 5 days a week except off for July 3-4 then back on until the 28th. I have to see the dr and check on my chemo on Monday.

what was the best method you had for covering your picc line to shower?

Mollymaude

Froggy

I had a port put in, so I didn't have a pic line. Taking a shower or bath with the fanny pack is tricky anyway. I put the fanny pack on the floor beside bathtub and just took a shallow bath for those five days. Can you cover pic line with Saran Wrap? 

The distance you have to travel sounds tough. I had a thirty minute distance to go for my treatments. Sometimes the ride was painful because you are sitting on the treatment area! Do you have anybody you can stay with in the town you're getting treatment? If you do that might be a good back up plan if you just don't feel up to the ride later on in treatment. 

Froggy32

Mollymaude said:

Froggy

I had a port put in, so I didn't have a pic line. Taking a shower or bath with the fanny pack is tricky anyway. I put the fanny pack on the floor beside bathtub and just took a shallow bath for those five days. Can you cover pic line with Saran Wrap? 

The distance you have to travel sounds tough. I had a thirty minute distance to go for my treatments. Sometimes the ride was painful because you are sitting on the treatment area! Do you have anybody you can stay with in the town you're getting treatment? If you do that might be a good back up plan if you just don't feel up to the ride later on in treatment. 

no

We don't know anybody there. My hubby goes there with me everyday. He has heart problems and copd so can't stand to be out in the heat too long either. It wears us both out. But we will just have to do what has to be done.  

Froggy32

Day three of radiation

went well. In and out before my actual appointment time.  The nurse gave me a goody bag filled with a bad pad, w spray bottle, Vaseline, wipes, oatmeal bath. Gloves, pads, and gauze bandages. I wish every day would be as quick as this one. They have a program to help out with expenses and I got the application for it, but we make a little over the allowed amount. Oh well, we tried. I hope everyone that needs it apply for it and get it with no problem. 

mp327

Froggy32 said:

Day three of radiation

went well. In and out before my actual appointment time.  The nurse gave me a goody bag filled with a bad pad, w spray bottle, Vaseline, wipes, oatmeal bath. Gloves, pads, and gauze bandages. I wish every day would be as quick as this one. They have a program to help out with expenses and I got the application for it, but we make a little over the allowed amount. Oh well, we tried. I hope everyone that needs it apply for it and get it with no problem. 

Froggy32

So glad to hear that day 3 went well.  Sorry you didn't qualify for the assistance with your expenses.  God will work things out for you!

Mollymaude

Froggy

Just a thought but I would fill out the paperwork for the assistance anyway and include extenuating circumstances like how much your monthly costs are for both you and your husband's medications each month. Including medical supply expenses like the Depends and Ensure, etc.