Beginning radiation for rectal tumor

MeAndMine

AnneO1965 said:

What about Nystatin cream?

What about Nystatin cream? Can you call your oncologist and ask about that? They tried treating me with that first, didn't make the blisters go away, but it did relieve some of the burning. 

Thank you for the suggestion!

Thank you for the suggestion! I’ll ask about it. I know it takes time. I’m so worn out over time that I’m ready for a break. It has to get better each day. Eventually I’ll get there. I appreciate and love the support here. 

Annabelle41415

Geez

I've been there and know exactly where you are coming from.  I've cried on the toilet, supressed having to go the bathroom and just quit eating so nothing would come out, but it doesn't work.  Please try the Calmoseptine barrier lotion, it helped me so much.  I've probably missed some of your posts, but know what you are talking about.  Wishing you the best.

Kim

MeAndMine

Annabelle41415 said:

Geez

I've been there and know exactly where you are coming from.  I've cried on the toilet, supressed having to go the bathroom and just quit eating so nothing would come out, but it doesn't work.  Please try the Calmoseptine barrier lotion, it helped me so much.  I've probably missed some of your posts, but know what you are talking about.  Wishing you the best.

Kim

Thank you Kim! I was afraid

Thank you Kim! I was afraid the menthol in the ointment would burn. Did you use it on the inside as well as out? Urine burns so bad. I’m still trying to make sure to drink enough water so it’s at least diluted but I need to do more. Trying to eat more but then I cry thinking “why did I eat?!” It’s truly a miserable experience. 

My surgeon said I should start eating normally again and wean off the low residue diet but I’m afraud of any changes. I’m barely making it as it is. I’m not eating much. Maybe an egg and later a roll with turkey. I know I need more than 300 calories a day but so far can’t do much more than that. 

Today is day 8 since stopping treatment. It has to get better. 

Hugs and thanks to all of you for helping me through this. 

Annabelle41415

MeAndMine said:

Thank you Kim! I was afraid

Thank you Kim! I was afraid the menthol in the ointment would burn. Did you use it on the inside as well as out? Urine burns so bad. I’m still trying to make sure to drink enough water so it’s at least diluted but I need to do more. Trying to eat more but then I cry thinking “why did I eat?!” It’s truly a miserable experience. 

My surgeon said I should start eating normally again and wean off the low residue diet but I’m afraud of any changes. I’m barely making it as it is. I’m not eating much. Maybe an egg and later a roll with turkey. I know I need more than 300 calories a day but so far can’t do much more than that. 

Today is day 8 since stopping treatment. It has to get better. 

Hugs and thanks to all of you for helping me through this. 

Burn

The calmoseptine didn't burn me at all.  No, going inside the rectum or vagina probably wouldn't be a good idea as they have to create their own defense and this might hamper it, but you could ask your doctor.  I've just never did that as putting it on my anus area was what hurt so badly.  My diet went right back to normal after treatment and really wasn't on any type of restrictions, but it sure did hurt to go and hated every minute of it, including the urine.  Everything burned.  Unfortunately, for me, it lasted for several months, but it does get better.  Hope you find some relief soon.  Keep us updated.

Kim

MeAndMine

Hanging in there

Today is day 15 after radiation. Im really tired of the process today. I hate waking up to another day of trying to heal. It’s better though. I’m just happy I’m not crying every time I go to the bathroom. Still painful but better. I thought once I started healing, I’d keep healing but ended up getting new blisters in new places. Wasn’t expecting that. I’ve been putting corn starch in the creases of my thigh to try to dry things out. 

I’m not eating enough yet.I still would rather not have to go to the bathroom. I’m eating more and the diarrhea has abated so I’m enjoying vegetables again. All this time they’ve pushed the calories but now the surgeon says eat well and don’t gain so surgery will be easier.  I’ve been waiting for the day I could get a decadent dessert to put on weight but haven’t had an appetite and when I do feel like it, it’s probably not a wise choice!

Oncologist expected surgery to be done this month. Surgeon says I have a lot of healing to do and that’s too soon. I’m tired of everything right now. I just want a break. 

Trubrit

MeAndMine said:

Hanging in there

Today is day 15 after radiation. Im really tired of the process today. I hate waking up to another day of trying to heal. It’s better though. I’m just happy I’m not crying every time I go to the bathroom. Still painful but better. I thought once I started healing, I’d keep healing but ended up getting new blisters in new places. Wasn’t expecting that. I’ve been putting corn starch in the creases of my thigh to try to dry things out. 

I’m not eating enough yet.I still would rather not have to go to the bathroom. I’m eating more and the diarrhea has abated so I’m enjoying vegetables again. All this time they’ve pushed the calories but now the surgeon says eat well and don’t gain so surgery will be easier.  I’ve been waiting for the day I could get a decadent dessert to put on weight but haven’t had an appetite and when I do feel like it, it’s probably not a wise choice!

Oncologist expected surgery to be done this month. Surgeon says I have a lot of healing to do and that’s too soon. I’m tired of everything right now. I just want a break. 

Rubbish!

One decedant dessert will not (literally) kill you.  Decedant desserts every day or three times a week, yes, but one lovely treat is just that, a lovely treat. 

Just my opinion. 

It took me at least four months to 'get right' after radiation.

My Radiation Oncologist still follows me, becasue of those pesky long-term side effects that can pop up months and years afterwards.  

Let us know when you get a surgery date, and you can be sure all of us thinking of you and sending those good vibes. 

Tru

AnneO1965

How you doing?

Hiya Me, how are you feeling now? Hope things are easing up for you!

MeAndMine

AnneO1965 said:

How you doing?

Hiya Me, how are you feeling now? Hope things are easing up for you!

I wish I was more upbeat and

I wish I was more upbeat and had a better outlook for you. I’m healing, it’s just so slow. I still can’t sit and still not eating much. Going to the bathroom burns so bad, I’d rather not eat. I can do more but run out of steam quickly. I feel like it’s taking so long and as soon as I get a glimmer of normalcy, I’ll be going in for surgery and another hurdle to deal with. I'm back in bed, just waiting on it to get dark enough outside to call it a day. 

That being said, I know I’m better. the sores are healing and I can do more. I started to delete the complaining but I know here, of all places, I can be real and say this experience was the worst, most awful ordeal, but I made it and I’m still making it. One day at a time and we all do the best we can each day. 

Hugs and thanks to all of you. If you’ve been there, I’m proud of your strength and willingness to share your experience with the rest of us, and if you’re just starting out, its a tough road but so many here will give you their hand to help you through. 

MeAndMine

Trubrit said:

Rubbish!

One decedant dessert will not (literally) kill you.  Decedant desserts every day or three times a week, yes, but one lovely treat is just that, a lovely treat. 

Just my opinion. 

It took me at least four months to 'get right' after radiation.

My Radiation Oncologist still follows me, becasue of those pesky long-term side effects that can pop up months and years afterwards.  

Let us know when you get a surgery date, and you can be sure all of us thinking of you and sending those good vibes. 

Tru

Thanks so much Tru. I have

Thanks so much Tru. I have appointments next week but won’t see the surgeon again until closer to the end of the month. 

I haven't been where there was a dessert I wanted enough to try yet, but one day I will!

suzycruise76

MeAndMine said:

I wish I was more upbeat and

I wish I was more upbeat and had a better outlook for you. I’m healing, it’s just so slow. I still can’t sit and still not eating much. Going to the bathroom burns so bad, I’d rather not eat. I can do more but run out of steam quickly. I feel like it’s taking so long and as soon as I get a glimmer of normalcy, I’ll be going in for surgery and another hurdle to deal with. I'm back in bed, just waiting on it to get dark enough outside to call it a day. 

That being said, I know I’m better. the sores are healing and I can do more. I started to delete the complaining but I know here, of all places, I can be real and say this experience was the worst, most awful ordeal, but I made it and I’m still making it. One day at a time and we all do the best we can each day. 

Hugs and thanks to all of you. If you’ve been there, I’m proud of your strength and willingness to share your experience with the rest of us, and if you’re just starting out, its a tough road but so many here will give you their hand to help you through. 

Very nicely said,

Me. And I admire your resilience and will to get through it. It seems to me like yesterday that you had been preparing for your first session ...and look at you now- you are done and healing. All the best to you in your next steps,

Suzy

MeAndMine

suzycruise76 said:

Very nicely said,

Me. And I admire your resilience and will to get through it. It seems to me like yesterday that you had been preparing for your first session ...and look at you now- you are done and healing. All the best to you in your next steps,

Suzy

Thank you Suzy! 

Thank you Suzy! 

cinda

surgery

I may be wrong in your case but they told me I would have surgery 3 weeks after radition also. But when I went to the doctor after, they said your insides need to heal. I said what about the cancer and they said don't worry it grows very slow. then they told me take chemo and maybe you won't need sugery. Well I didn't take chemo . This is a year later and I still haven't got sugery. I was one test away when they decided to send me for test for female parts. That involved 3 test I've done one. I have stage 4 colon cancer in two areas. I hope you get a break and feel strong before surgery. we're here for you !

AnneO1965

Take it easy!

If you are sleeping alot, that's what your body needs. I know that when I got done with my chemo/radiation treatments, all I wanted to do was sleep. I was caretaker for my husband who was on hospice, so I had a lot of duties I had to do during the day and night, but I slept when I could. There were many times that all I could manage was to give him his meds, his breathing treatment, food and that was it. I'd sleep in a chair beside his bed so that if he needed something, it was easy for him to wake me up.

Listen to your body, it knows what it needs. Hope you start feeling like yourself soon. When you can, get up and move around, eat lots of protein. I'm thinking about you every day, I'm here for you!

MeAndMine

cinda said:

surgery

I may be wrong in your case but they told me I would have surgery 3 weeks after radition also. But when I went to the doctor after, they said your insides need to heal. I said what about the cancer and they said don't worry it grows very slow. then they told me take chemo and maybe you won't need sugery. Well I didn't take chemo . This is a year later and I still haven't got sugery. I was one test away when they decided to send me for test for female parts. That involved 3 test I've done one. I have stage 4 colon cancer in two areas. I hope you get a break and feel strong before surgery. we're here for you !

I wish I could just stop here

I wish I could just stop here and not have to do the surgery but my oncologist is ready for it to take place and waiting on the surgeon to get going. My surgeon will decide the next steps after a couple more weeks of healing. I'm not looking forward to more of anything. They didn't offer me more chemo until after the surgery and said they'd decide on the type of chemo after the pathology from the surgery. I don't know, it's all a lot and I'm so overwhelmed when I start thinking about it. 

MeAndMine

AnneO1965 said:

Take it easy!

If you are sleeping alot, that's what your body needs. I know that when I got done with my chemo/radiation treatments, all I wanted to do was sleep. I was caretaker for my husband who was on hospice, so I had a lot of duties I had to do during the day and night, but I slept when I could. There were many times that all I could manage was to give him his meds, his breathing treatment, food and that was it. I'd sleep in a chair beside his bed so that if he needed something, it was easy for him to wake me up.

Listen to your body, it knows what it needs. Hope you start feeling like yourself soon. When you can, get up and move around, eat lots of protein. I'm thinking about you every day, I'm here for you!

I'm getting up more but I had

I'm getting up more but I had big plans to get in more walking and get so many steps in. As it is I'm doing good to want to come downstairs in the morning. 

You had a hard time with taking care of your husband and yourself at the same time. I did well taking care of my husband before but lately I've had to tell him that I just can't do what I used to do and he's had to do more plus deal with me and my woes. I felt so bad when I was crying and he started crying--he never cries. It's been a rough time here. 

I've not eaten protein like I was during treatment. Now instead of diarrhea I've gone the other way and I'm afraid of not being able to go to the bathroom. I really have to figure out the food situation. I keep losing. I wasn't little to start with but it's scary to keep losing like this. It's not me. My skin is so dry right now too.

I have no idea how to eat anymore. I'm barely eating and still went to the bathroom 9 times yesterday. It's no fun and I'm super tired of hurting. 

One day I'll be more upbeat and have some better things to say. I'll get there. I appreciate you and everyone here!

AnneO1965

How you doing?

Ok Me, this is my usual check in, how ya doing? Feeling any better yet? Don't push yourself, just do what you feel you can. Your body has already been through a lot.

 

I'm praying for you, and I want you to be better, dammit... 

MeAndMine

AnneO1965 said:

How you doing?

Ok Me, this is my usual check in, how ya doing? Feeling any better yet? Don't push yourself, just do what you feel you can. Your body has already been through a lot.

 

I'm praying for you, and I want you to be better, dammit... 

You are so sweet to keep up

You are so sweet to keep up with me! I'm doing much better. Not 100% but way better than before. I went for a mole check this week and the dermatologist checked out my radiation burns and prescribed some ointment that she said will make it heal faster. I had given up using anything as nothing seemed to really help and I thought maybe it needed only air. I have wide, red, zebra stripes in my thighs. But it doesn't hurt as bad as what came before so I can deal with it. I'm lucky that I have so many other doctors who will put their two cents in on what might work because I like to have lots of things to try to make it better.

I have a check-up with the radiologist this afternoon. Just waiting on time to leave. I'm super tired of going to doctors and it's not going to be over any time soon so I need to learn to go with the flow, lol.

I don't know how long the fatigue will last. I get tired so easily, even just trying to carry things into the house from the car. I used to push myself to get things finished and never wanted to help. I always say "I can do it myself but thank you". But since all of this, I even get help carrying my purse, so if anything, it has taught me to let go and accept help. And when I'm tired while trying to help move things or whatever, I will finally say that I have to have a break and will go sit down. 

I had to get a suspicious mole removed and two other places on my face needed freezing. She said it was damaged skin but once she froze the places they would leave fresh new skin behind and be fine. She was worried about the mole and I have to say I never even noticed it and went back to look at pictures but don't see anything so it must've come up quickly. It was small and red. My face looks bad with those red places on it. It makes me look sickly with the quick weight loss I've had and all the dry sagginess that came with it. I don't feel as bad as I think I look!

My daughter is coming to stay next week and I spent most of last week with the kids so that has done wonders with my spirit. I know things are just going to get better from here, then I can start the next leg of the journey.

I'm thankful for this board and everyone here for helping me through the first part and looking forward to the guidance for whatever comes next. 

AnneO1965

YAY!!!

I am so glad to hear that you are feeling better! Rest up, the next part isn't going to be easy either. The surgery will kick you in the butt as well, but it will feel like there is a "reason" for it.  At least that was my experience.

I know what you mean about the saggy dry skin from the weight loss. I lost 86 pounds in the almost year I was going through the process. My arms are so flappy my grandkids say I look like I could fly away if I waved them fast enough.  But I'll tell you this, I DON'T CARE... I'll take flappy skin, I want to lose about 30 more, then I'll be where I should be. 

I've been doing the "30 days of gratitude" thing on Facebook, and it's funny how my whole attitude has shifted since I got my NED. I'm actually looking forward to things now, and trying to make a plan for my future.

You keep moving on, and know I'm right there with you if you need an ear. Keeping my fingers mentally crossed for you.

 

Anne

MeAndMine

I'm beginning to feel more

I'm beginning to feel more like myself again. Sometimes I even forget for a second and then it hits me like a brick. Things are much better though I'm still fighting constipation. I'm not sure how to fix that as I'm doing everything they tell me to do. Maybe it's my new normal but I'll keep trying to figure it out. I wish it was resolved by now that I won't be too sore at my next appointment when they will do a DRE and use the light and equipment to get a look and see what's going on in there. Not looking forward to that. 

I know I still have a long road ahead but it's nice to know that one part of the journey is behind me. I'm glad I'll be able to see everyone for Thanksgiving and be able to kind of eat a bit normally and sit and enjoy the kids. Next month is Christmas and lots of birthday's in our immediate family, including mine. I'm not sure where I'll be on my birthday but I think I will be through the surgery by then. 

I wonder how long I will be in the hospital and how long recovery may be. I know everyone is different so there is no telling really. They are thinking that it will be a permanent colostomy and closing of the anal sphincter.

I need to call the oncologist this morning to see if he wants to reschedule the appointment he made for me when I went there the last time. At that time he thought I'd be two weeks post surgery but I haven't even scheduled the surgery yet because the surgeon said I had to heal more before then. 

I hope you are all doing great and finding joy in each day. I'll check in when I have more news. For now I'm thankful to be able to do more everyday things and feeling more like my old self again. That is a blessing!

Trubrit

MeAndMine said:

I'm beginning to feel more

I'm beginning to feel more like myself again. Sometimes I even forget for a second and then it hits me like a brick. Things are much better though I'm still fighting constipation. I'm not sure how to fix that as I'm doing everything they tell me to do. Maybe it's my new normal but I'll keep trying to figure it out. I wish it was resolved by now that I won't be too sore at my next appointment when they will do a DRE and use the light and equipment to get a look and see what's going on in there. Not looking forward to that. 

I know I still have a long road ahead but it's nice to know that one part of the journey is behind me. I'm glad I'll be able to see everyone for Thanksgiving and be able to kind of eat a bit normally and sit and enjoy the kids. Next month is Christmas and lots of birthday's in our immediate family, including mine. I'm not sure where I'll be on my birthday but I think I will be through the surgery by then. 

I wonder how long I will be in the hospital and how long recovery may be. I know everyone is different so there is no telling really. They are thinking that it will be a permanent colostomy and closing of the anal sphincter.

I need to call the oncologist this morning to see if he wants to reschedule the appointment he made for me when I went there the last time. At that time he thought I'd be two weeks post surgery but I haven't even scheduled the surgery yet because the surgeon said I had to heal more before then. 

I hope you are all doing great and finding joy in each day. I'll check in when I have more news. For now I'm thankful to be able to do more everyday things and feeling more like my old self again. That is a blessing!

This is good news, indeed

I am happy to hear that you are feeling a little better.  You will be at the 'looking back' stage one day, and that is such a blessing. Something to look forward to.

Do you want to share your birthday date? I like to post a celebration thread for birthdays. December has several - including mine -  No problem if you don't. 

Your surgeon is wise to let you heal well. I'm surprised at your Oncologist for wanting the surgery so soon after treatment, especially as raditaion was so brutal for you.  I am glad that you are having time to heal. 

You are right about surgery being different for all of us.  I went into mine uite helathy (seven years ago this month), and that helped with the healing. I had no complications.  

As for the constipation, I hope that resolves soon. Radiation caused the opposite for me, and even though it is allot better, I still have to know just where the bathrooms are - or the nearest bushy bush. I have had many an accident along the way.  Still, I think I would take a loose bowel over constipation, so I do hope you can figure out what works for you. 

Onward and upward.

Tru