Newly diagnosed rectal cancer

[NHMike]

On asking about family history - this can help them with treating you or it could help for research purposes. It might make it easier if you wrote down the answers beforehand where you can be composed and then just hand them what you wrote. I sometimes do this in answer to question at the doctors office. Yesterday, one medical student and one NP asked me about frequency. I just handed them my iPad showing what a really bad day was like. They asked about an exercise that I did that resulted in a pop around the ileostomy site and some abdominal pain as well. I just showed them a video of me doing the exercise.

So it may be one way to answer questions that you know are coming ahead of time. It might also be easier if someone interviewed you and wrote them down at home.

[MeAndMine]

I have to take Imodium and fiber for bathroom issues. I try staying on BRAT diet mostly.
Sometimes I have no idea why one day is better than another.

Are you still on the BRAT diet Sue? I was on it for so long and was afraid to deviate from it but all of a sudden I think I have gone the other way. It'd be nice to just be normal!

During treatment I ate a lot of cottage cheese for the protein. I used to love it but one day I thought I could never eat it again because of having to have it so often. This week I was craving it and had a bowl just because it's good. I need to get back on the high protein. Back then I tried to get at least 100 grams a day but now I'm afraid of constipation so I'm not eating as much meat or cottage cheese as I was then.

How's your weight holding up? I'm not staying steady yet but not losing as fast as I was. I at least want to maintain where I am now and quit losing. I hope you are healed and feeling great! I'm way better than I was before, probably at 75%. I'm sure it would have healed better had I continued to keep up with the protein. I was really good about it during treatment but only because I was afraid to take the Xeloda without eating well and even if I didn't get enough calories, I made sure most of them were protein.

One day at a time! I hope you are back on your feet and feeling great. It's really nice to be on the other side of the first leg of the journey.

[NHMike]

I have to take Imodium and fiber for bathroom issues. I try staying on BRAT diet mostly.
Sometimes I have no idea why one day is better than another.

Are you still on the BRAT diet Sue? I was on it for so long and was afraid to deviate from it but all of a sudden I think I have gone the other way. It'd be nice to just be normal!

During treatment I ate a lot of cottage cheese for the protein. I used to love it but one day I thought I could never eat it again because of having to have it so often. This week I was craving it and had a bowl just because it's good. I need to get back on the high protein. Back then I tried to get at least 100 grams a day but now I'm afraid of constipation so I'm not eating as much meat or cottage cheese as I was then.

How's your weight holding up? I'm not staying steady yet but not losing as fast as I was. I at least want to maintain where I am now and quit losing. I hope you are healed and feeling great! I'm way better than I was before, probably at 75%. I'm sure it would have healed better had I continued to keep up with the protein. I was really good about it during treatment but only because I was afraid to take the Xeloda without eating well and even if I didn't get enough calories, I made sure most of them were protein.

One day at a time! I hope you are back on your feet and feeling great. It's really nice to be on the other side of the first leg of the journey.

Carbs are generally less filling compared to fat and protein so you can probably get more calories by going with carbs over protein though, yes, you do need protein. I like cottage cheese too but you have to eat it fairly quickly as it can go bad in a short period of time. I haven't had it for a while - I should pick it up at the grocery store.

[MeAndMine]

I had a lot of skin changes with chemo. My toes and fingers got really dark, especially on the back. I had brown spots on my face and some other areas too. The brown color eventually went away after chemo though some of the spots remain.

I'm glad to know it's not just me. I noticed my face has a lot of brown spots, too. Then the dermatologist froze a place up on my forehead that I hadn't noticed. It wasn't brown to me. She said she could see "skin damage" and was nipping it in the bud but I couldn't figure out how it was different from the other places. I asked my kids if they had noticed it and one of them said she did notice the place on my forehead that the doctor found. She said she noticed it on my last day of radiation but didn't say anything, thinking it was like a liver spot or whatever normal aging thing happens. I really have no idea about the different looks of things because when she showed me the spot on my forehead, I showed her two on my arm that looked similar to me but she said those were fine. I'll leave it to the professionals! I seemed to age really quickly in the last couple of months though. Lots more spots and wrinkles and overall changes that just seem to be coming faster than I expected.

On asking about family history - this can help them with treating you or it could help for research purposes. It might make it easier if you wrote down the answers beforehand where you can be composed and then just hand them what you wrote. I sometimes do this in answer to question at the doctors office. Yesterday, one medical student and one NP asked me about frequency. I just handed them my iPad showing what a really bad day was like. They asked about an exercise that I did that resulted in a pop around the ileostomy site and some abdominal pain as well. I just showed them a video of me doing the exercise.

So it may be one way to answer questions that you know are coming ahead of time. It might also be easier if someone interviewed you and wrote them down at home.

That is a really excellent idea. I could have written it on the sheet they had me fill out even though it wasn't asked on the paper, then they'd know and be more sensitive about bringing it up. The poor nurse at the heart doctor that I broke down on didn't even know what to do but hand me a box of tissues. It's simply too much for me to talk about, even writing this has me in tears.

I do keep a lot of notes on what is going on but they need to be combined and digital. I keep up with my nutrition on a website then I write everything about the bathroom on a notepad that I keep beside the bed. I have to look at the nutrition info and try to compare to see what may have caused what reaction.

I am or have been very computer literate and have always been the one the family calls to fix their devices, both software and hardware, but when it comes down to it, I love a pad and paper. I prefer a paper calendar and paper notes but have moved to a digital calendar to share appointments with family. I need to find a cohesive app that I can combine my food journal with my bathroom habits, lol. That doesn't seem to be like a much needed thing for most people. Maybe I should just put it down in notes on my phone.

[NHMike]

I do keep a lot of notes on what is going on but they need to be combined and digital. I keep up with my nutrition on a website then I write everything about the bathroom on a notepad that I keep beside the bed. I have to look at the nutrition info and try to compare to see what may have caused what reaction.

I am or have been very computer literate and have always been the one the family calls to fix their devices, both software and hardware, but when it comes down to it, I love a pad and paper. I prefer a paper calendar and paper notes but have moved to a digital calendar to share appointments with family. I need to find a cohesive app that I can combine my food journal with my bathroom habits, lol. That doesn't seem to be like a much needed thing for most people. Maybe I should just put it down in notes on my phone.

I use iCloud notes for recording things. Notes sync between my computer, iPhone and iPad. There are similar apps for Android and there are third party apps like One-Note, Evernote and so on. So you can record it on one device and it shows up on all your other devices.

[jts]

Carbs are generally less filling compared to fat and protein so you can probably get more calories by going with carbs over protein though, yes, you do need protein. I like cottage cheese too but you have to eat it fairly quickly as it can go bad in a short period of time. I haven't had it for a while - I should pick it up at the grocery store.

You guys are making me hungry for cottage cheese. That used to be a favorite for me, but it just doesn't exist in Germany. Adding it to the list of things to eat next week!

[suereal]

I have to take Imodium and fiber for bathroom issues. I try staying on BRAT diet mostly.
Sometimes I have no idea why one day is better than another.

Are you still on the BRAT diet Sue? I was on it for so long and was afraid to deviate from it but all of a sudden I think I have gone the other way. It'd be nice to just be normal!

During treatment I ate a lot of cottage cheese for the protein. I used to love it but one day I thought I could never eat it again because of having to have it so often. This week I was craving it and had a bowl just because it's good. I need to get back on the high protein. Back then I tried to get at least 100 grams a day but now I'm afraid of constipation so I'm not eating as much meat or cottage cheese as I was then.

How's your weight holding up? I'm not staying steady yet but not losing as fast as I was. I at least want to maintain where I am now and quit losing. I hope you are healed and feeling great! I'm way better than I was before, probably at 75%. I'm sure it would have healed better had I continued to keep up with the protein. I was really good about it during treatment but only because I was afraid to take the Xeloda without eating well and even if I didn't get enough calories, I made sure most of them were protein.

One day at a time! I hope you are back on your feet and feeling great. It's really nice to be on the other side of the first leg of the journey.

Hi there ! Great to see you are feeling better !!!

I’m doing well. Not in anymore pain and energy level is up !
Think pain just wears you out.
Bathroom issues better, not resolved, but improving.

I’ve ventured out into trying and testing other foods.
The nurse said introduce one at a time, but was at a friend’s this weekend and
starving by dinner, I cast the applesauce I brought aside, and tried a little bit of a few new foods, including a dessert, without any repercussions. WooHoo !
Haven’t lost or gained any weight since radiation ended. Will be 4 weeks Friday.

Only skin issues I have is dry, cracked feet.
And my feet feel especially cold sometimes and weird/tingly. Don’t know if it’s neuropathy
just from the Oxaliplatin in the Folfox I already had, or in combination with Xeloda.
Am looking into how to address this, since it’s sticking around.

Mostly I’m grateful for feeling more like my old self again.

[MeAndMine]

You guys are making me hungry for cottage cheese. That used to be a favorite for me, but it just doesn't exist in Germany. Adding it to the list of things to eat next week!

I’m glad you’ll be in the land of cottage cheese next week. Enjoy!

[MeAndMine]

I use iCloud notes for recording things. Notes sync between my computer, iPhone and iPad. There are similar apps for Android and there are third party apps like One-Note, Evernote and so on. So you can record it on one device and it shows up on all your other devices.

I have an iPhone and iPad. And an Android tablet and Kindle. I haven’t used the notes app on iPhone in a while. I’m not sure why I stopped. I was using Evernote but the app kept glitching and half of the time didn’t save on my iPad or it’d save three times with the same name so I kind of backed off on it and started using email for notes. I’ll have to get back into a good program. I never tried one-note. I think that’s the one that kept popping up on my computer but I didn’t have a need for it at the time.

These devices are amazing to have. When my primary kept insisting my heart needed looking at, I could show her the info on my phone from my watch. She still had me go to the cardiologist to be sure and luckily everything was fine. It’s good to have all of this technology these days.

[MeAndMine]

Hi there ! Great to see you are feeling better !!!

I’m doing well. Not in anymore pain and energy level is up !
Think pain just wears you out.
Bathroom issues better, not resolved, but improving.

I’ve ventured out into trying and testing other foods.
The nurse said introduce one at a time, but was at a friend’s this weekend and
starving by dinner, I cast the applesauce I brought aside, and tried a little bit of a few new foods, including a dessert, without any repercussions. WooHoo !
Haven’t lost or gained any weight since radiation ended. Will be 4 weeks Friday.

Only skin issues I have is dry, cracked feet.
And my feet feel especially cold sometimes and weird/tingly. Don’t know if it’s neuropathy
just from the Oxaliplatin in the Folfox I already had, or in combination with Xeloda.
Am looking into how to address this, since it’s sticking around.

Mostly I’m grateful for feeling more like my old self again.

I’m so glad you’re feeling well and getting to have some new foods. It’s nice to eat something besides low residue foods now.

I maintained pretty well during radiation but started losing again when I was done. I need to eat well but everything is a guessing game as to how my body will react so I don’t eat much. I ate more the last couple of days but today I’m back at 600 calories for the day. Maybe I’m eating too much fiber. No idea but things don’t move well now. I was so used to not being able to make it to the bathroom. I’ll have to learn to adjust, lol.

I hope you get relief from your dry cracked skin. My hands are doing that! They started peeling around the nails and I have hangnails and really dry skin. My nails still seem strong but the skin is not. I guess it could be a combination of the chemo and the winter weather. Have you tried something like OKeeffe’s Working Hands? My oncologist said a patient told him about it and it kept my hands and feet soft during treatment. It really worked but I stopped using it as soon as treatment ended. I need to put some on right now. My daughter bought it for me, I think at Walmart? Here’s their website if it’ll help https://okeeffescompany.com/

[MeAndMine]

This winter weather is doing a number on my dry skin. I want to blame it all on the weather but it could be something to do with treatment. My hands are so dry and my fingertips have sore places as well as my tongue. It feels like when I was in treatment and I needed the magic mouthwash. I've gone back to swishing with the baking soda/salt water mixture and using the strong lotions at night. I don't like the feel of that lotion--it seems super tacky and kind of like it leaves a film so I'm using regular lotion during the day.

I've never had constipation issues really before now but man it's hard to get things right! I eat so much fiber and have been so glad to get back to salads and vegetables but I'm sorely lacking on the protein front as I'm afraid to eat much meat. I write down everything I eat to make sure I'm eating right and still have troubles in the bathroom. I didn't really bleed before now, but now I've got a bleeding hemorrhoid I guess. I go to the surgeon next week so we will see what is up but it's no fun. I sure miss the days of not thinking about going to the bathroom constantly.

I love being able to sit without thinking about how to do it without pain. I still use a cushion at my desk but can sit on the couch and all without much thought at all. My thigh area is still not healed. Much better than it was so I don't think about it too much.

I'm not looking forward to having the scope next week with all of the bathroom issues I'm having. I wish I could sort it out so that I wasn't sore but I have no idea how to combat this constipation. I do everything they've told me and everything I've read but it doesn't seem to respond. I'm thinking that things are shrunken and smaller so it's harder to make it work like it used to. I'm not real sure what's up.

I am still eating less calories that I should be with all of the bathroom issues but I'm doing okay. I was at 1300 yesterday which is way better than the 700 I normally get. I enjoy food and have a good appetite but I'm aware that what goes in must come out so I can't make myself eat a whole lot with that on my mind.

It sure feels nice to be somewhat normal though! I'm able to go out and run errands without having to worry about accidents now like I had to before. Sometimes I even forget and feel like my old self again. I usually have all of the holiday prep done by now but this year I was down for so long, I'm way behind. I got started this week and things will get done eventually. I did no decorating for the fall holidays and I'm not sure if I will for winter. Usually my house is decked out from top to bottom. I will probably keep it at a minimum so there won't be a lot to put away once the holidays are over.

I'm getting anxious about what is ahead but try not to think about it. I can't change what's coming so I'm trying to learn to take things one day at a time instead of constantly worrying.

It feels good to move more so I'm going to concentrate on that. Hope you are all staying warm and feeling well! It's hard to believe it's getting toward the end of November already. It feels like it's going so fast.

[NHMike]

For protein, you might consider plant-based protein. There are protein supplements, typically based on Pea Protein these days. It was based on soy in the past. Rob's Red Mill makes protein powders that you can use for shakes or baking.

I'm using lotion on my hands myself as my fingertips are very dry. The objective evidence that I have of this is that my iPhone doesn't recognize my fingerprint when I go to unlock it.

I'd also suggest core work. This might help with bathroom issues overall and decrease injury risk.

You are actually on the other side of treatment - it's a pretty rough road to get to where you are now.

[suereal]

Time sure Is flying... I can hardly focus on holidays !
Better get my act together.

My shedding skin and cracking feet have improved with liberal use of Udderly Smooth cream.

Went for a peripheral neuropathy massage yesterday, which was actually pretty helpful for
pain and tingling in my feet. Highly recommend ~
It hurt a little in some spots, but mostly felt great and really got the circulation going.
Was given instructions on how to continue at home and a container of lotion to use.

Exercise is on my mind. Will prob start with therapeutic yoga and indoor walking before mall opens.
I have done water aerobics and treadmill at the gym for years, but feel weird about the chlorinated
water now.

Don’t have any advice on constipation issues, as I had a time with that during chemo.

Feeling pretty good compared to a couple weeks ago.
So appreciate sitting down without the wince.

Take Care Everyone !

[NHMike]

Exercise is on my mind. Will prob start with therapeutic yoga and indoor walking before mall opens.
I have done water aerobics and treadmill at the gym for years, but feel weird about the chlorinated
water now.

I don't think that I'd go into a pool or the ocean with skin issues as the salt water or chlorinated water could exacerbate them.

I have a goal of running 40 miles in a week. I did that the week before being diagnosed in 2017 and haven't done anything close to that since then.

It's good to have exercise goals, even if they take a while to achieve them.

[suereal]

Exercise is on my mind. Will prob start with therapeutic yoga and indoor walking before mall opens.
I have done water aerobics and treadmill at the gym for years, but feel weird about the chlorinated
water now.

I don't think that I'd go into a pool or the ocean with skin issues as the salt water or chlorinated water could exacerbate them.

I have a goal of running 40 miles in a week. I did that the week before being diagnosed in 2017 and haven't done anything close to that since then.

It's good to have exercise goals, even if they take a while to achieve them.

Yes, think it would help in so many ways.
Hope you reach your running goal... that would be amazing !