not alone

KarenK57
KarenK57 Member Posts: 18
in Anal Cancer #1

Hi everyone.....I am so glad I found this website and this blog.  I felt all alone with this particular cancer because it is so rare.  Now after reading all these blogs about anal cancer I feel alot better emotionally and physically with all the helpful hints about dealing with the soreness.  Tomorrow will be day 20 of my radiation.  And Friday I will start my second session of chemo for four days.  Last week my hair started to thin out alot from the last chemo.  I finally got it cut real short.  Its still falling out.  I knew it was gonna thin out but not as much as it is. That was a very scary and emotional thing to deal with.  Does anyone have severe diarrhea from the radiation?  I cant keep anything in my stomach.  I am taking lomotil from the dr. but still having issues.  Thank goodness for Aquaphor and cottonelle wipes :)  

Hope everyong is doing well and beating the battle !!!! 

«13

Comments

  • mxperry220
    mxperry220 Member Posts: 496 Member
    #2
    YES

    I remember the horrible diarrhea during and after treatments.  I told my radiaologist I did not want to eat anything because I knew what the result was going to me.  That said I ate toasted cheese sandwiches on white bread, dill pickles, Ensure, and ice cream.  I suggest you eat nothing with fiber at this point.  I took immodium several times per day which helped.  I am 5 years 5 months post treatment and still take two immodium per day even though I do not have diarrhea.  I had frequent bowel movements after treatment.  I never went too far from home during the first 2 years because of fear of an accident.  Even today I try to not have any morning commitments in order to make sure I am "empty" before venturing out.  My norm was 1-2 times per day prior to treatment.  After treatment for the first 3 years my norm seemed to be 4-6 times per day.  Now my norm seems to be 2-3 times daily.  Hope this helps a little.

    Mike

  • AZANNIE
    AZANNIE Member Posts: 445 Member
    #3
    Me too

    Yes, I had diarrhea during treatment and for awhile after treatment. I also took lomotil which helped. You're not alone in this journey. Your treatment is almost done and then the healing begins.

    Ann

  • KarenK57
    KarenK57 Member Posts: 18
    #4
    mxperry220 said:

    YES

    I remember the horrible diarrhea during and after treatments.  I told my radiaologist I did not want to eat anything because I knew what the result was going to me.  That said I ate toasted cheese sandwiches on white bread, dill pickles, Ensure, and ice cream.  I suggest you eat nothing with fiber at this point.  I took immodium several times per day which helped.  I am 5 years 5 months post treatment and still take two immodium per day even though I do not have diarrhea.  I had frequent bowel movements after treatment.  I never went too far from home during the first 2 years because of fear of an accident.  Even today I try to not have any morning commitments in order to make sure I am "empty" before venturing out.  My norm was 1-2 times per day prior to treatment.  After treatment for the first 3 years my norm seemed to be 4-6 times per day.  Now my norm seems to be 2-3 times daily.  Hope this helps a little.

    Mike

    Thanks Mike ... Yes it helps.

    Thanks Mike ... Yes it helps.  I am afraid to eat anything.  Im already down 10lbs.  I was hoping to go back to work by August but if this doesnt stop I might have to find a different job.  grrrrrrr  I think Im gonna get some Ensure to help with the nutrition I am lacking due to not eating very much.   thanks again

      

     

  • mp327
    mp327 Member Posts: 4,440 Member
    #5
    KarenK57

    I'm sorry you have had to join our group, but it will be a great place for information, as you are already finding out.  I also suffered from severe diarrhea during treatment and afterwards for several months.  Now, do not let that frighten you because the post-treatment problems were, IMO, due to my poor food choices.  I was attempting to get back to healthy eating--lots of raw fruits and veggies.  That was a mistake and my digestive system just couldn't handle those things yet.  I finally changed my diet and it helped a lot.  I hope that the post-treatment period for you will be better than mine was.  I'm sorry the lomotil isn't curbing the diarrhea.  Keep talking to your doctors about this until they find something to help you.  Make sure to drink plenty of water because the diarrhea will dehydrate you very quickly.  I wish you all the best and look forward to hearing more from you.  Take care.

  • jcruz
    jcruz Member Posts: 379 Member
    #6
    If your diarrhea is severe

    If your diarrhea is severe and you cannot adequately hydrate yourself, ask for hydration appointments in your infusion center.  This was critical for me beginning in about the 3rd week of treatment and lasted for 3 weeks after treatment.

    I'm sorry to hear about your hair loss.  I had been hoping to be one who only had to deal with thinning.  It thinned after the 1st round of chemo and I got it cut short.  Then after the 2nd round of chemo it all came out but just a few strands that I called my crazy old man hairs.  After a couple of months I had enough hair to look like a buddhist nun and  then as it really came back it was super curly and I felt for months that I just didn't look like myself.  Losing your hair is a very scary and emotional thing and is something that others may not understand.

    Take care and keep in touch

    Janet

  • KarenK57
    KarenK57 Member Posts: 18
    #7
    Depression

    Well this past weekend has been rough.  Between the severe hair loss (which I am sure will all be shaved off soon) and the diarreha that will not stop and radiation burns I am having a hard time dealing.  I can't stop crying.  My poor husband doesn't know what to do.  I know hair will grow back.  He tries real hard to make me feel better. I feel bad that my toughness is weakening. My energy level is low and i don't want to do anything.  Can't go too far from home.  Sorry I just feel like venting and I have no shoulder to cry on here.  Family lives far away.  Im sure this will pass.  Thanks for listening  

  • MKW213
    MKW213 Member Posts: 29
    #8
    KarenK57 said:

    Depression

    Well this past weekend has been rough.  Between the severe hair loss (which I am sure will all be shaved off soon) and the diarreha that will not stop and radiation burns I am having a hard time dealing.  I can't stop crying.  My poor husband doesn't know what to do.  I know hair will grow back.  He tries real hard to make me feel better. I feel bad that my toughness is weakening. My energy level is low and i don't want to do anything.  Can't go too far from home.  Sorry I just feel like venting and I have no shoulder to cry on here.  Family lives far away.  Im sure this will pass.  Thanks for listening  

    KarenK57

    Hugs from a distance. I am 1 month out from radiation and chemo. The radiation burns have healed. There is hope for you!  There are some great turbans and head covers, try www.headcovers.com . I didn't have much hair loss, but certainly did my fair share of crying and still do, now that I'm starting all over again with exams, tests and biopsies. My social worker says this is all normal and to just let loose. I have a very supportive husband, too, but it still ME and YOU going through this!  Your toughness is just resting and will be back. It's really just like a rollercoaster. Some days good, some days not so. But hang in there. Hope you feel better. And another hug.

     

  • TraceyUSA
    TraceyUSA Member Posts: 316
    #9
    KarenK57 said:

    Depression

    Well this past weekend has been rough.  Between the severe hair loss (which I am sure will all be shaved off soon) and the diarreha that will not stop and radiation burns I am having a hard time dealing.  I can't stop crying.  My poor husband doesn't know what to do.  I know hair will grow back.  He tries real hard to make me feel better. I feel bad that my toughness is weakening. My energy level is low and i don't want to do anything.  Can't go too far from home.  Sorry I just feel like venting and I have no shoulder to cry on here.  Family lives far away.  Im sure this will pass.  Thanks for listening  

    KarenK57

    An unfortunate welcome to you, Karen.  I lost most of my hair and I think this was harder for me than the diarreha, skin burns, discomfort & irratiation and loss of appetite.  Yes, hair will come back (I'm one year and 3 months post treatment and my hair is thicker than ever) but it's the visual realization that you are "a cancer patient."  (Up until that point I think I was able to fool myself.)  People may be sympathetic but they do not understand.  A few weeks after your treaments are done you will begin to feel beeter and you'll be surprised how quickly you'll heal.  The hair will take while to come back (I think it was about 2-3 months before I got stubble.)  Hang it there, it'll soon be a thing of the past!  Thoughts & prayers to you.  - Tracey

  • jasmine1865
    jasmine1865 Member Posts: 4
    #10
    Just got diagnose with Cancer.

    Hi all I just join and I was on another essage board until I notice that most of the messages there are very old.  This one seems to be more updated.  I am just crushed that I have colon cancer.  i never thought it would be me but again why not me!  Given the his tory of family of cancer.  I can't sleep right now i have to be at work in a few hours.  I  need to know how to cope with this reality.  I am just blown away.  Above all i am afraid.

  • mp327
    mp327 Member Posts: 4,440 Member
    #11
    KarenK57 said:

    Depression

    Well this past weekend has been rough.  Between the severe hair loss (which I am sure will all be shaved off soon) and the diarreha that will not stop and radiation burns I am having a hard time dealing.  I can't stop crying.  My poor husband doesn't know what to do.  I know hair will grow back.  He tries real hard to make me feel better. I feel bad that my toughness is weakening. My energy level is low and i don't want to do anything.  Can't go too far from home.  Sorry I just feel like venting and I have no shoulder to cry on here.  Family lives far away.  Im sure this will pass.  Thanks for listening  

    Karen

    Going through cancer treatment is very traumatizing in multiple ways.  Losing one's hair is like the last straw.  I cried a lot too while I was going through this--so much pain, so little energy, not being able to go out and enjoy life.  However, recovery is quite quick for most people and that is my hope for you.  Soon you will be healed and life will begin to return to normal.  But for now, if you need to cry or vent, just do it.  Holding it all in is not good.  We are listening and you can come here anytime to let the tears flow.  Hang in there--you will get through this!

  • jcruz
    jcruz Member Posts: 379 Member
    #12
    KarenK57 said:

    Depression

    Well this past weekend has been rough.  Between the severe hair loss (which I am sure will all be shaved off soon) and the diarreha that will not stop and radiation burns I am having a hard time dealing.  I can't stop crying.  My poor husband doesn't know what to do.  I know hair will grow back.  He tries real hard to make me feel better. I feel bad that my toughness is weakening. My energy level is low and i don't want to do anything.  Can't go too far from home.  Sorry I just feel like venting and I have no shoulder to cry on here.  Family lives far away.  Im sure this will pass.  Thanks for listening  

    depression

    I'm sorry to hear that the weekend was so rough.  I think we've all been through those awful days.  I cried so much I swear I went through a case of kleenex from diagnosis to many months  past the end of treatment.  I'm now about 20 months post-treatment and have been seeing a therapist for the past year and recently have seen a psychiatrist because my depression was deepening and had become so overwhelming that I need antidepressants.  The doctors and nurses all encouraged me to explore some cancer support groups in my area but I just couldn't imagine sitting with strangers.  I know it is beneficial for many people to talk with others who are also on the cancer journey but I have found individual therapy to be just the thing for me.  You may not be ready for anything like that yet but keep those options in mind for later.  We can be your shoulder to cry on anytime you need.

    Janet

  • mp327
    mp327 Member Posts: 4,440 Member
    #13
    jasmine1865 said:

    Just got diagnose with Cancer.

    Hi all I just join and I was on another essage board until I notice that most of the messages there are very old.  This one seems to be more updated.  I am just crushed that I have colon cancer.  i never thought it would be me but again why not me!  Given the his tory of family of cancer.  I can't sleep right now i have to be at work in a few hours.  I  need to know how to cope with this reality.  I am just blown away.  Above all i am afraid.

    jasmine

    I'm sorry you have been diagnosed with colon cancer.  Those of us on this board have all had anal cancer.  While I'm sure we have experienced some of the same issues that you may have, treatment for colon cancer is much different than for anal cancer.  You might want to check out the colon cancer group on this site.  I have to believe it's a pretty active board.  We don't mind you joining us, but those folks might have better information for you, I'm just not sure.  I wish you all the best in dealing with your fears and this disease. 

  • KarenK57
    KarenK57 Member Posts: 18
    #14
    Thank you

    Thanks to everyone for all the advice and support. Its nice knowing we are not alone.   Radiation is getting more intense.  Getting afraid for chemo on Friday.  I feel so lazy but just don't have the oomph to do anything.  We are strong and we will overcome this.  Hope everyone is doing good, prayers for you all.  

  • KarenK57
    KarenK57 Member Posts: 18
    #15
    o the pain

    I wish I could sit in the tub all day.  The radiation is getting worse. Now it even hurts when I urinate! I think these next 10 days of radiation and chemo are going to be the worst yet.  I'm trying to stay strong biut it sure is getting harder. I just keep telling myself 10 more days and the healing begins. The Dr. suggested I think about a hysterectomy after this so cancer doesn't form there. And now I also was told I have shingles on my butt that I always thought was just a rash.  My roller coaster just keep a going downhill. Time to make the slow climb uphill. Thanks all for listening.

  • mp327
    mp327 Member Posts: 4,440 Member
    #16
    KarenK57 said:

    o the pain

    I wish I could sit in the tub all day.  The radiation is getting worse. Now it even hurts when I urinate! I think these next 10 days of radiation and chemo are going to be the worst yet.  I'm trying to stay strong biut it sure is getting harder. I just keep telling myself 10 more days and the healing begins. The Dr. suggested I think about a hysterectomy after this so cancer doesn't form there. And now I also was told I have shingles on my butt that I always thought was just a rash.  My roller coaster just keep a going downhill. Time to make the slow climb uphill. Thanks all for listening.

    Hang in there!

    The last few treatments can be the worst, without a doubt, but you have the strength to get through this!  As for the burning with urination, get a peri-bottle and spray room temp water on the area as you pee.  It will keep it from stinging.  You can do this--you can!  I will keep you in my thoughts and prayers.

  • KarenK57
    KarenK57 Member Posts: 18
    #17
    colloidal oatmeal

    A friend of mine brought me over some oatmeal baths.  Sounds soothing and was wondering if anyone has tried this.  Today I got my last chemo ball. I like the sound of "last". 

    Hope everyone is doing well 

  • mp327
    mp327 Member Posts: 4,440 Member
    #18
    KarenK57 said:

    colloidal oatmeal

    A friend of mine brought me over some oatmeal baths.  Sounds soothing and was wondering if anyone has tried this.  Today I got my last chemo ball. I like the sound of "last". 

    Hope everyone is doing well 

    Karen

    I've heard of colloidal oatmeal baths and how soothing it is, so I say try it!  I'm glad you are done with chemo and I hope the remainder of your treatment will pass quickly so you can begin healing.  Have a restful weekend!

  • sandysp
    sandysp Member Posts: 868 Member
    #19
    KarenK57 said:

    Thank you

    Thanks to everyone for all the advice and support. Its nice knowing we are not alone.   Radiation is getting more intense.  Getting afraid for chemo on Friday.  I feel so lazy but just don't have the oomph to do anything.  We are strong and we will overcome this.  Hope everyone is doing good, prayers for you all.  

    Oh wrong word!

    You are not lazy. This treatment is designed to kill cancer cells. It practically kills us sometimes while it is working.

    Americans (and I'm one my whole life) think we are supposed to be doing something or we are lazy. Resting is doing something. Rest is when your body recovers. Rest, rest, rest. Sometimes I slept 18 hours at a time. The process continues for a few weeks after the last treatment. You have to be very very patient with yourself. If anyone thinks you should be doing something, that's their problem. Right now, put yourself first.

    When I went to the forum at MSKCC on anal cancer, they said ours is the most "hellish" treatment they dole out for cancer, but the good news is, the end is within sight, unlike some other cancers where the treatments go on and on and on.

    Anyway, us cancer survivors cannot afford the luxury of a negative thought. We must be vigilant. So please, don't think of yourself as lazy, or useless or any of those things. You are important to all of us here and we know your body is working hard for you.

    Be kind and patient with yourself and don't expect less of those around you. Try to ask for help whenever you can. Others like to be called upon to help, if you let them.

    I learned so much from anal cancer and that part was good for me.

    All the best in your recovery, you are in my prayers now.

    Sincerely,

    Sandy

     

     

     

  • KarenK57
    KarenK57 Member Posts: 18
    #20
    burns too much to handle

    My radiation burns have become so unbearable I'm at a meltdown. Called Dr on call and got me some silverdine and pills that turn my urine orange. I have some severe burns inside my female parts. Bathing nor lotions are helping. Dr says he might have to take a break in radiation.  He will look at my burns tomorrow.  So close to being done.  I feel like I'm letting myselfdown by becoming weak from the pain.  Hope all is better with everyone. Thanks again for listening.

  • AZANNIE
    AZANNIE Member Posts: 445 Member
    #21
    KarenK57 said:

    burns too much to handle

    My radiation burns have become so unbearable I'm at a meltdown. Called Dr on call and got me some silverdine and pills that turn my urine orange. I have some severe burns inside my female parts. Bathing nor lotions are helping. Dr says he might have to take a break in radiation.  He will look at my burns tomorrow.  So close to being done.  I feel like I'm letting myselfdown by becoming weak from the pain.  Hope all is better with everyone. Thanks again for listening.

    Karen

    Please don't feel that you're letting yourself down because you're not. This treatment isn't a picnic. You're stronger than you think. This is the roughest time. I almost didn't finish the last 5 zaps. I did have a break but not because the radiation oncologist recommended it. My nether regions were blistered. I wore boxer shorts because I didn't want anything rubbing on leg creases. I did get a little relief sitting in sitz bath. Be sure to be drinking fluids. I'm sure others will be chiming in. We've all been there. Hope your dr can offer suggestions tomorrow. Hang in there!

    Ann

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