Newly diagnosed rectal cancer

[MeAndMine]

Now to figure out how to add a signature.

Sue, to add a signature, click or tap on the down arrow by your name at the top right of the page. Then tap “user control panel” Then tap on the tab that says “Profile” and then “Edit Signature”. I think that will get you there.

Hope that helps!

[NHMike]

I'm glad that you have access to Cavilon Spray - I didn't know about it at the time.

The Cavilon spray was luck. My daughter went to the compound pharmacy and was discussing things with the pharmacist as she waited. She saw it on the shelf and picked it up and asked about it. She didn’t know if it would help but she picked up any and everything she saw that had potential. She also bought me a female urinal but I can’t imagine anything touching the area so I haven’t attempted that. She was thinking maybe it’d direct the stream away from open skin. It might, but I haven’t tried.

I ran into Cavilon Spray because I was having problems with my ileostomy. I'm not sure whether or not you're going to get one but insurance covers your ileostomy supplies and that includes wipes to provide a barrier. You can get Cavilon wipes but they are a royal pain to use. Someone here mentioned Cavilon spray and I bought a three-pack of spray devices and they were far easier to use compared to the wipes. Insurance only covers the wipes, though, so I had to pay out of pocket for Cavilon Spray. I later also found out that the spray is helpful for diarrhea as it protects the skin from the caustic effects.

I hope that you're over the pain and suffering soon. It is really rough but it does end.

[suereal]

Now to figure out how to add a signature.

Sue, to add a signature, click or tap on the down arrow by your name at the top right of the page. Then tap “user control panel” Then tap on the tab that says “Profile” and then “Edit Signature”. I think that will get you there.

Hope that helps!

Yes, thank you ! Seemed a bit overwhelming at the time.

Today is 10 days after and I feel there is some improvement.
The burning didn’t last as long this morning and the broken glass feel is less.
Like you said... I’ll take it !
I may even get out of the house for a bit, which would be fantastic !

It sure is nice not to have to worry about timing of that Xeloda !
Hope you are feeling better !

Blessings to All !

Sue

[NHMike]

Now to figure out how to add a signature.

Sue, to add a signature, click or tap on the down arrow by your name at the top right of the page. Then tap “user control panel” Then tap on the tab that says “Profile” and then “Edit Signature”. I think that will get you there.

Hope that helps!

Yes, thank you ! Seemed a bit overwhelming at the time.

Today is 10 days after and I feel there is some improvement.
The burning didn’t last as long this morning and the broken glass feel is less.
Like you said... I’ll take it !
I may even get out of the house for a bit, which would be fantastic !

It sure is nice not to have to worry about timing of that Xeloda !
Hope you are feeling better !

Blessings to All !

Sue

I had early radiation appointments so making sure that everything was checked off was important and I was off by an hour or two or three some days. The Xeloda and radiation make you tired so it's easy to forget to take the Xeloda. Sometimes I took two pills and didn't remember how many I had taken.

[suereal]

Hi Mike,
Know what you mean.
One morning driving to radiation I couldn’t remember if I had taken my pills
From then on I started writing down day, time, and number of pills as I took them.
Xeloda did make me very tired.
My memory is still affected or maybe too much on our minds so we forget things.

[MeAndMine]

The Xeloda and radiation make you tired so it's easy to forget to take the Xeloda. Sometimes I took two pills and didn't remember how many I had taken.

I started taking a picture every time I took the pills. Sometimes I would all of a sudden wake up and gasp and think I didn’t take them. Finally I just got into the habit of every time I poured the pills into the bottle cap I would sit them on the desk and eat. Because one time I had eaten dinner and was waiting a few minutes to take them and forgot. So I would lay them out so that I would see them and take them after I ate and every time before I took them I took a quick picture on my phone. That way when I freaked out that I forgot or took the wrong amount, I could go back to my pictures and look and reassure myself that I did what I was supposed to.

[MeAndMine]

Today is 10 days after and I feel there is some improvement.
The burning didn’t last as long this morning and the broken glass feel is less.
Like you said... I’ll take it !
I may even get out of the house for a bit, which would be fantastic !

It sure is nice not to have to worry about timing of that Xeloda !
Hope you are feeling better !

I’m so glad to hear you’re feeling better. I agree with you, I feel like today maybe we turned a corner. I still dread going to the bathroom and I did have a few tears early this morning, but I know it is better.

I keep thinking I will get out of the house or at least get out of the bed. I have been mostly in the bed since my last treatment. I just have a hard time sitting, but I believe by tomorrow I should be able to do that.

I do not miss taking those pills. At all!

Tomorrow I have an appointment with the oncologist for bloodwork to see how I am recuperating. And a few days later I have another appointment with the surgeon. He wants to check up on my skin since I was having such a hard time at his office last week.

[suereal]

Sitting can be a challenge , I usually curl my legs up and sit on the side of a hip.
Once I settle in, can manage for awhile. If my pup wants to be picked up,
I wince since the movement aggravates the area.
The car doesn’t seem as bad for some reason.

It was good to get out yesterday.
Maybe pushed it a bit too far as was hobbling around the library during my last stop.

Good luck with venturing out for Dr visits.
Seems like that surgeon is really trying to help you.

[MeAndMine]

Still trying to heal. I wanted it to be faster. I developed blisters on my thighs and groin area as the other areas started to heal. It’s like you think it’s getting better and something else pops up. Still having bathroom issues but it’s better.

Surgeon is in no hurry. He said I have a lot of healing to do. Feeling down and tired of everything at the moment. Diarrhea went away so now I’m afraid to go the other way and am back to my regular high fiber diet.

Oncologist was worried about my constant weight loss. Surgeon said try to stay where I am and don’t try to put any back on. I’m not eating as much as I should as I’m still worried that whatever goes in must come out.

I’ve done a little walking but the blisters are making it difficult to want to move my legs. I haven’t worn my Fitbit or watch in months.

[NHMike]

Still trying to heal. I wanted it to be faster. I developed blisters on my thighs and groin area as the other areas started to heal. It’s like you think it’s getting better and something else pops up. Still having bathroom issues but it’s better.

Surgeon is in no hurry. He said I have a lot of healing to do. Feeling down and tired of everything at the moment. Diarrhea went away so now I’m afraid to go the other way and am back to my regular high fiber diet.

Oncologist was worried about my constant weight loss. Surgeon said try to stay where I am and don’t try to put any back on. I’m not eating as much as I should as I’m still worried that whatever goes in must come out.

I’ve done a little walking but the blisters are making it difficult to want to move my legs. I haven’t worn my Fitbit or watch in months.

Hard candies are one way to get some calories without having to worry about output.

[suereal]

Still trying to heal. I wanted it to be faster. I developed blisters on my thighs and groin area as the other areas started to heal. It’s like you think it’s getting better and something else pops up. Still having bathroom issues but it’s better.

Surgeon is in no hurry. He said I have a lot of healing to do. Feeling down and tired of everything at the moment. Diarrhea went away so now I’m afraid to go the other way and am back to my regular high fiber diet.

Oncologist was worried about my constant weight loss. Surgeon said try to stay where I am and don’t try to put any back on. I’m not eating as much as I should as I’m still worried that whatever goes in must come out.

I’ve done a little walking but the blisters are making it difficult to want to move my legs. I haven’t worn my Fitbit or watch in months.

Hi! Checking in to see how you are doing.
Sure hope those blisters are getting better.

Thank goodness the incredibly inflamed area I had is prob 80 percent better.
Have been able to sit regular for awhile now. Actually feel normal at times.
Bathroom issues a little better, but can’t seem to shake the diarrhea and morning urgency.
Went for a check yesterday. Blood work was good, I’m glad about that.

Regarding weight... the whole eating thing is frustrating.
It’s like you develop a bad relationship with food.
I’ve lost about 25 pounds since dx last April.
My appetite is somewhat back, but still so limited in my food choices.
The nurse yesterday said introduce new foods one at a time.
And the naturopath I see recommended Orgain Protein shakes.

Sue

[MeAndMine]

Regarding weight... the whole eating thing is frustrating.
It’s like you develop a bad relationship with food.

True. I still don’t want to eat. I get hungry and I want things but I would just rather not have to deal with any of it. Just when I think I’m starting to feel better, I feel like I go backwards.

I still can’t sit. I feel very swollen in front and burning in back. I feel like everyone thinks I should be over it by now. When I have a bad day, I hear, “I thought you were better. You did so well yesterday!” That’s because I didn’t eat so I could get relief from going to the bathroom.

I’m tired. And all I see is a long road ahead of more of the same. I know I’m better. I was able to clean and do laundry and lift things today I haven’t been able to do. I wish I could feel more optimistic. I have lost my happy thoughts and don’t do any of the things I used to do. I try to want to do things but I go back to bed. I have to work on it more.

[suereal]

Regarding weight... the whole eating thing is frustrating.
It’s like you develop a bad relationship with food.

True. I still don’t want to eat. I get hungry and I want things but I would just rather not have to deal with any of it. Just when I think I’m starting to feel better, I feel like I go backwards.

I still can’t sit. I feel very swollen in front and burning in back. I feel like everyone thinks I should be over it by now. When I have a bad day, I hear, “I thought you were better. You did so well yesterday!” That’s because I didn’t eat so I could get relief from going to the bathroom.

I’m tired. And all I see is a long road ahead of more of the same. I know I’m better. I was able to clean and do laundry and lift things today I haven’t been able to do. I wish I could feel more optimistic. I have lost my happy thoughts and don’t do any of the things I used to do. I try to want to do things but I go back to bed. I have to work on it more.

That’s how it started when I knew I was getting better... cleaning and laundry.
Even though it seems slow, you are gaining strength and stamina.

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.

[MeAndMine]

Slowly but surely, I'm feeling better. I had an appointment yesterday and realized that I could sit in the chair in the waiting room without wincing. I still tend to sit on one side or the other but at least I sat down instead of standing like I had been doing. And it was really nice when they told me to sit on the exam table and I could actually do it! Lately I had been crawling up there and laying on my side.

I went to the dermatologist for an annual mole check. She saw a red mole on my temple. I hadn't even seen it and came home looking through photos to see if I could spot it but it seems like it just sprang up out of nowhere recently. She removed it and sent to off for testing but other than that mostly things were looking well. She did freeze some damaged skin that could potentially be a problem but it was no big deal. Hopefully if the red mole was anything, she caught it early.

Did any of you notice skin changes on the rest of your body after chemo radiation treatment? My skin all over seems dry and paper thin and wrinkly. Then again I have lost over 40 pounds since I first got diagnosed so maybe that has to do with it. But also moles and freckles seem like they have gotten darker. Maybe they just stand out more from weight loss but I had an area that was flesh toned that is now brown and seeming to get darker. She said it was fine but she could burn it off it it bothered me. I told her I don't think I need anything else to have to worry about healing right now but I may take her up on it when I go back for a recheck in a few months. Now I seem to notice it more than ever.

I have so many different doctors but am so pleased that they each try to help with the radiation problems. The surgeon was the best about prescribing different things to try then the dermatologist looked at the area yesterday and asked what I was using on it. I told her I had quit using anything because nothing seemed to make a difference. She prescribed me a new ointment/cream to try and said it would help with the healing. I don't know what it is as she called it in to the pharmacy and it wasn't ready until I was in bed last night so I'll pick it up later today.

The last couple of days I've eaten more calories. I had been staying around 600 or so a day because I couldn't figure out what to eat and was afraid of everything. The last two days I've made myself eat breakfast and ate more so I was around 1200 calories which is the most I've had since treatment ended on October 18. But, the last two days I also have hardly been able to go to the bathroom so this morning I'm just like "Nope, not eating". I had actually planned to go buy breakfast to take to go visiting today but I'm afraid to eat now.

I made my first cup of real coffee this morning. I was afraid of the caffeine causing diarrhea but I figured it might help. It hasn't but the coffee sure is good. I think it about a week ago that I had my first cup of decaf. I hadn't had coffee at all since all of this started just because of the bathroom factor. I know I think too much but anything you eat causes some kind of reaction and I'm afraid of all of it sometimes.

Something that I always have trouble with is when they ask about family history of colon cancer. I want to not write anything because I know they will ask and I've broken down each time. I know they need to know, but I can hardly talk about it. My sister passed from it and they will always ask "And how's she doing now? Fine?" The nurse yesterday felt so bad and began to tell me about her mother's diagnosis. She was so sweet and thoughtful. There are so many good people who just want to help.

I'm starting to feel somewhat normal again. It will be nice to be healed and feel better even if it's just for a week before I have to go on to the next stage. I'm interested in how the tumor has reacted to the treatment. I go back to the surgeon at the end of the month and he will do a scope. Not looking forward to that. It didn't hurt when he did it the first time but that was before radiation. I'm not sure how that will work out this time. But it'll be nice to know if/how much the tumor shrank. It sure did a number on the rest of my pelvic area, so hopefully the tumor got wrecked in the process as well!

I'm thankful for this board and the people here who share their knowledge and help with the whole process. It's wonderful to know that someone is at the other end of your keyboard who can help when you have a question.

[NHMike]

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 things are improving for you. Hopefully all of the side-effects will go away soon. It sounds like you need some kind of program to regain the lost weight.