Adjuvant Chemo Therapy

Thanks for the post.

I wake up every three to four hours at night to empty the bag whether or not it really needs it just for peace of mind.

I have the same problem with eating too much before going to bed. If I do this, my rest is less peaceful and I get up more freqently to empty the bag. Last night I said no to additional food from my wife even though I would have enjoyed more. And I feel much better for it this morning. I don't have any problems maintaining weight. I actually have the problem of trying to not gain and I would like to lose about four pounds in the next couple of weeks. I don't feel like I'm eating that much but I must be if I have to work at not gaining it.

I think that the attention to detail, routine, and behavior is required throughout the whole process. I think that you know that I'm a process guy and set up metrics and electronic reminders for everything (it's the neurotic part of me). I don't think that this would be particularly difficult for you either as you think about the process and how to improve it and that's the main part of getting better at this stuff.

One other thing, how are you doing physically? Is it easier to get out of bed or maybe you're getting out of bed as before surgery? How about driving, walking, or even raking? One of the funny things that I worry about in the office is opening fire doors. We have fire doors everywhere. Pushing them is no problem, what is sometimes a worry is pulling one open as they are quite heavy.

airborne72 said:

Mike - and everyone else:

My mobility is good.  I have been driving since four days after discharge.  Not long or fast - just in town stuff.  The greater challenge is getting in and out of the vehicle.

I have cautioned myself about gut exertions, as you described with the fire doors.  It is so easy to forget and then do somthing risky.  I may be somewhat protected from a hernia because I already have been repaired for a bilateral inguinal hernia.  They inserted a sheet of plastic mesh inside my gut to fortify my body cavity.  That mesh may be providing me some additional, and most welcomed, protection.

My out-and-about has been drastically curtailed by this chemo.  I am housebound until I regain some strength.  Plus, I do not want to catch any viruses.

Input vs. output.  I experienced my first bag failure last night.  I awoke to a weird sensation and immediately knew what it was.  I looked under the wet spot on my t shirt and I had a pile of effluent puddled in my navel.  What a mess!!  Cleaning up and applying a new wafer was not easy since my stoma was super active at 4 a.m.  Go figure.  Last night I ate supper earlier than ever (6:30) and I ate less.  It's just karma.  The most important thing I learned from the experience is to ALWAYS have a wafer precut and ready to go.  That menial and tactile challenging task of cutting that hole is doubly frustrating at 4 a.m. when you are by yourself and your stoma is on high output.  I wanted to scream.  Instead, I focused on damage control by minimizing the spread of the effluent. This is so humbling, and irritating.  I am all thumbs when it comes to changing the wafer.

One additional comment.  I remembered this from one of your earlier posts regarding the stoma paste and how sticky it is and how difficult it is to get off your fingers.  Use a cotton swab (the ones on cardboard sticks used to clean out ears) to spread it.  Works like a charm.

One additional question/request.  There are hundreds of years of experience on this forum.  If anyone has developed successful techniques for changing ostomy wafers then please share.  For example, is it better to apply the paste to the wafer or to your stomach?  Other than eating mashmellows, is there a proven method of reducing stoma flow to aid in the change of wafers?  What has been the ideal frequency for changing your wafer?  How do you address the issue of skin irritation around your stoma?  And lastly, my stoma has become an introvert (currently flush with the skin at best) and this changes the dynamics of the paste barrier.  Ideas?

Jim (a frustrated, sleep-deprived ostomate in Tennessee)

Yes, I know that feeling. It woke me up in a hurry and I'm glad my wife got me a towel quickly or it would have been on the bed. I do need to toss the towel though. I think that my Ostomy Nurse did a really good job with teaching me the process. I ran into the shower with the towel holding the stuff coming out and my kids helped me out. They brought a wooden stool which I use for bag changes (it's a nice height and it just holds the stuff that I need at the time. My daughter filled up a small container of water when something came out and I just washed it off though I had to do it many times (which is why the process took an hour). I would not have been able to do the tracing from the shower. I did the cutting, applied the paste and used the barrier wipes. The barrier wipes are the thing that's really sticky, not the paste for me. I never tough the paste. Here's the current revision of my directions:

Changing stoma and wafer
Supplies:

1 Wafer
1 Stoma Bag
1 Tube Paste
6 Packets of barrier wipes
1 Disposable Glove
Scissors
Template
Clear flexible bandage for wound
Bandaids
4 Face Cloths
Toilet Paper
Empty wastebasket
2 Small Trash Bags

Step 1: Remove Old Bag and Wafer and Clean Area
- Peel off the old wafer.
- Clean with facecloth.
- Peel off old paste (stool may come out while cleaning). May need to rub with dry towel to get paste off.
- Use wet towel to go around stoma; it may take a few passes.

Step 2: Prepare Tracings with Template
- Open Wafer Package.
- Check template alignment and sizing.
- Place template face up (ink facing me) on wafer, open in package. Template has top labeled.
- Trace with a pen into the backing.
- Cut with trace facing me.
- Draw a T at the top.

Step 3: Prepare the Stoma Wafer and Bag
- Attach the bag to the wafer and press the ring firmly.
- Close the bag outlet with Velcro.
- Peel off the wafer paper.
- Apply thin layer of paste from the perpendicular tube around the ring.
- Flatten with tube tip.

Step 4: Clean skin around stoma and create skin barrier
- Use barrier wipes to clean the skin around the stoma and create a skin barrier.

Step 5: Install the stoma
- Before removing the backing, put on the stoma.
- Hold it down for at least two minutes for the paste to warm up and attach well to the skin.
- Remove the backing while pressing against the skin.
- Press all the way around to ensure a good seal.

   When I had chemo it was a big bag of 5fu. I used to turn up at the chemo clinic every tuesday morning. He would ask me how I was doing and give me the pinch test to see how well hydrated I was . Then we would do a weigh in . The 5fu was graduated as per the patients weight. Mine always looked like one of those solar camping showers. More often than not I would receive half a bag of saline before I started the 5fu and the rest of the saline bag was used to flush all of the 5fu thru the lines. It took  most of the morning to receive the full chemo dose. I worked every day of the week except chemo day and most week ends . Every second tuesday I got to take home 9 tablets of levamisole , three a day for three days after the chemo. it was dreadful stuff. It caused a strong metallic taste and also taste reversal. During the wole of chemo I refused to eat foods and dishes I realy liked as the levamisole left bad memories of what was eaten . The blander the food the better. In the early 2000''s levamisole was banned for often fatal side effects. I went thru that for 48 tuesdays . My oncologist offered to give the last eight weeks a miss. I was not travelling that well and the constant strain of chemo and work was causing me a lot of stress. I had asked how my blood counts were going and he said mate the chemo has not dropped one of your counts in all the time you have been on it. I decided to see the treatment thru to the end. I was stage three c into six nodes at diagnosis. My surgeon was a very experienced cancer doctor and he never sugar coated anything. He said my cancer was as aggressive as any he had ever seen and he stated it will get you. You have three years max, if there is something you really want to do , do it now because you may not be able to do it in eighteen months time. I told him straight out that I don't die of cancer. He just looked at me and I said I just know. He laughed and said I hope you are right. I was 48 when he operated on me and I have lived nearly a third of my life as a cancer survivor. I am 67 now and on 22 jan 2018 I will reach the end of year twenty of survival.   Survival has not been easy and I carry a lot of baggae particularly from levamisole but as they say in the classics there are no free lunches there will always be a price to pay. I have learned to live with that. Good health to all. Ron.

Thank you for posting your experiences.  I am terrified of this chemo.  I still have some neuropathy in my toes from Xeloda I took in July and August.  My Onc called me last night to reiterate how important it was that I get started soon.  My last CT was mid September so I will get another CT in December and most likely begin a similar regimen.  Only 6 treatments, 12 weeks, and hopefully able to get surgery on liver and peritoneum mets.  

I am concerned about finances.  Can take 6 months of short term disability if needed with 80% pay.  Probably more sane to do that than to try to work.  I just got back to work last week and it's proving to be extremely stressful, not feeling back to normal at all sadly.

airborne72 said:

Mike - and everyone else:

My mobility is good.  I have been driving since four days after discharge.  Not long or fast - just in town stuff.  The greater challenge is getting in and out of the vehicle.

I have cautioned myself about gut exertions, as you described with the fire doors.  It is so easy to forget and then do somthing risky.  I may be somewhat protected from a hernia because I already have been repaired for a bilateral inguinal hernia.  They inserted a sheet of plastic mesh inside my gut to fortify my body cavity.  That mesh may be providing me some additional, and most welcomed, protection.

My out-and-about has been drastically curtailed by this chemo.  I am housebound until I regain some strength.  Plus, I do not want to catch any viruses.

Input vs. output.  I experienced my first bag failure last night.  I awoke to a weird sensation and immediately knew what it was.  I looked under the wet spot on my t shirt and I had a pile of effluent puddled in my navel.  What a mess!!  Cleaning up and applying a new wafer was not easy since my stoma was super active at 4 a.m.  Go figure.  Last night I ate supper earlier than ever (6:30) and I ate less.  It's just karma.  The most important thing I learned from the experience is to ALWAYS have a wafer precut and ready to go.  That menial and tactile challenging task of cutting that hole is doubly frustrating at 4 a.m. when you are by yourself and your stoma is on high output.  I wanted to scream.  Instead, I focused on damage control by minimizing the spread of the effluent. This is so humbling, and irritating.  I am all thumbs when it comes to changing the wafer.

One additional comment.  I remembered this from one of your earlier posts regarding the stoma paste and how sticky it is and how difficult it is to get off your fingers.  Use a cotton swab (the ones on cardboard sticks used to clean out ears) to spread it.  Works like a charm.

One additional question/request.  There are hundreds of years of experience on this forum.  If anyone has developed successful techniques for changing ostomy wafers then please share.  For example, is it better to apply the paste to the wafer or to your stomach?  Other than eating mashmellows, is there a proven method of reducing stoma flow to aid in the change of wafers?  What has been the ideal frequency for changing your wafer?  How do you address the issue of skin irritation around your stoma?  And lastly, my stoma has become an introvert (currently flush with the skin at best) and this changes the dynamics of the paste barrier.  Ideas?

Jim (a frustrated, sleep-deprived ostomate in Tennessee)

I still remember my first middle of the night leak.  It was definitely a humbling and mentally trying situation.  "Active Alice" was on a tear with nonstop discharge which made it a 2 1/2 hour bag change with an added meltdown.

I never found anything to slow "Alice" down during an unscheduled change.  The best way I found to clean up in a situation like this was to hop in the shower.  I would then proceed to attempt to accomplish the change as quickly as possible and as good as possible with the constant output.  I learned it could not be "perfect" at a time like that.

As for applying the paste, I never used paste.  I typically changed my wafer every 4th day as a scheduled change.  During a scheduled change, I would change it first thing in the morning before anything to eat or drink.  The skin irritation around the stoma, or excoriation as in my case. became a big problem and can cause the bag to not adhere as well.  My stoma also became flush with what I called an eyebrow.  Due to the change in my stoma, I used a convex wafer.  I also used a modable ring around the stoma prior to adhering the bag.  This worked well for me and helped heal my excoriated skin. I also used barrier strips around the outside of the wafer.

A trick that my home health nurse used was a blow dryer.  I would use it to thoroughly dry the barrier wipe on my skin.  I would then heat the moldable ring after applying to my skin, being careful not to use to much heat on the stoma.  I would also then heat the wafer after appling it to my skin.  I would then apply my barrier strips and heat them with the blow dryer too.   My WOCN from the hospital also had given me a pack of the body cleansing cloths they use in the hospital and had me heat it for 20-30 seconds in the microwave and I would then hold that over the wafer area of the bag while lying down to try and assure a good secure adhesion.  

This worked for me but not everyone needs to go to that much prep.  It's all about finding the right system and what will work for you.  Best of luck.

I can take 6 months STD at 80% pay.  I took 4 months.  I returned to work and if I stay at least 30 calendar days I can start a brand new STD for up to 6 months.  LTD kicks in at only 60% of my pay.  I am trying to be very careful with all if this.  My job is research and the team is being very accommodating.  But I feel like dead weight.  Ugh.  I hope next week is better.  

Ruth, thank you for the encouragement.  Once again, it seems the most active patients fare the best with chemo.  It's scary to read about those with extreme fatigue and neuropathy, or losing teeth....Only 6 treatments though.  I sure hope my scan comes out okay.

Trubrit said:

Oh gosh!

Could they not come up with another acromym? When I was growing up, STD was sexually transmited disease.  HA! 

OK, I found it amusing. 

Tru

it took me a little to figure what they were talking about!! Lol 

BRHMichigan said:

STDs

You guys!!!!  LOL. 

Right now it could stand for Stress ToDay.  I am really trying to calm down juggling all thus and family and financial stuff.  Some days are so rough emotionally.

Financial stress is horrible, I hate it! Hopefully family stress will take it easy on you. try and de stress as much as possible, it's not good for you! tomorrow is Thanksgiving being a vegetarian it's my least favorite holiday. Enjoy and relax!