Need some encouragement, please

AmyD1310
AmyD1310 Member Posts: 59

As pathetic as it may sound, I just sat and cried for 20 minutes in my bath. I have 9 more sessions of radiation to go, and while I'm grateful that my chemo rounds are finished, I can't seem to get a grip on the next almost 2 weeks of radiation. The pain I'm having is pretty intense, and the "sunburn" in my groin area is rather bothersome. I have been using the burn cream (silverdene something) and taking warm baths with sitz soaks.  I feel weak and like I can't possibly get through NINE more sessions. Any words of wisdom or encouragement would be appreciated. I know I'm nearing the end of this, but staring down the number 9 sure doesn't feel like it.  Thanks all.

 

-Amy

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Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    Amy

    I can certainly relate.  When I got down to the last few treatments I was in great misery.  I was burned, skin was sloughing off, I could not stay out of the bathroom, and I was very weak from not eating because my appetite was completely gone.  However, I hung in there and I'm so glad I did.  That was almost 8 1/2 years ago and I'm still here.  This is a time when you must pull strength up from rock bottom.  It's not easy, but you must. 

    Make sure the none of the silver sulfadiazine cream remains on your skin prior to a treatment, as the metal in the ointment will increase the burning effect.  Drink lots and lots of fluids.  If you have pain medication, take it as prescribed.  If you don't have any or need something stronger, ask for it.  Look for Domeboro packs, as many get relief from them for the burning.  You also might try Aloe.  Just be sure your skin is completely clean prior to treatment.  If you are still able to eat, get as much protein as you can, as this promotes healing.  However, eat whatever you can to get calories and some nourishiment.  To ease the burning, you might also try lying on the bed with a fan blowing cool air on your treatment area. 

    I wish I had one good bit of advice that would take away your pain, but it's really a trial and error thing.  Just remember that many of us have made it through this treatment and you can too.  Hang in there, you are almost at the finish line.

    Martha

  • eihtak
    eihtak Member Posts: 1,473 Member
    edited February 2017 #3
    Amy.....

    Ouch....we feel your pain! Pathetic, absolutely NOT!!! Crying is actually good for you (within reason) anyhow....it relieves a certain level of inner stress and as my grandpa used to say "makes your eyes sparkle" !!!

    I second all that Martha said regarding the ointments and also want to highlight the use of pain medication. This is not the time to tough it out that way. By the last couple weeks of radiation I was taking oxycontin time released tablets every 12 hrs as well as oxycodone as needed for break-through pain in between. The burning continued for a couple weeks after treatment ended so remained on the medication for a while after as well. In time, as I felt better, it was not difficult to gradually wean off the meds. (Just don't suddenly stop) That was all 6 years ago now!

    Sometimes life puts us in a spot that seems positively unbearable and like we just can't make it another day, but somehow we just do, we keep going (maybe in a painful blurry fog for a while) but we move forward. You will too, I just know it. Dig deep, say a prayer, sing a song, yell, scream, cry, take a breath and picture yourself a couple weeks from now DONE with this treatment. Keep that picture in your head and know that you will be in my thoughts and prayers and that you are not alone, we are here with you, and you got this!

    katheryn

  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    edited February 2017 #4
    Last treatments

    you can do it.  dont look at tomorrow Take one day at a time.   you are a very strong person to have done this treatment and you will finish it!

  • nan2017
    nan2017 Member Posts: 1
    edited February 2017 #5
    i just finished my treatments

    i just finished my treatments in early January. So much pain towards the end of treatments, I was asking my doctor if there was any protocol to stop early. He said "no." Please make sure you don't have a UTI. Although the sith baths helped me, I think I got a UTI from taking them. I has so much going on in that area, that my UTI went undected for 4 days. It caused me a lot of pain. Hang in there!

     

  • eihtak
    eihtak Member Posts: 1,473 Member
    nan2017 said:

    i just finished my treatments

    i just finished my treatments in early January. So much pain towards the end of treatments, I was asking my doctor if there was any protocol to stop early. He said "no." Please make sure you don't have a UTI. Although the sith baths helped me, I think I got a UTI from taking them. I has so much going on in that area, that my UTI went undected for 4 days. It caused me a lot of pain. Hang in there!

     

    nan2017....

    Congratulations on finishing!! I hope the healing and recovery is moving ahead smoothly. 

    You bring up a good point....I also had UTI's (twice) during treatment and was put on antibiotics. You are right, with all else going on it can be hard to detect at first!

    katheryn

  • AmyD1310
    AmyD1310 Member Posts: 59
    Thank you...

    ...for the suggestions, kindness and words of encouragement. I know that I will get through this, but my mind keeps flashing the number 9 (for the amount of radiation sessions left), and I start to feel anxious about the pain and misery of the next few weeks. I think that, while having the weekends off from radiation is nice, I tend to have too much time to think about the next week and the pain it will cause. I have been applying the aloe to my "sunburn", as suggested, and that definitely helps. Thanks again for being here and being supportive to those who are still going through this. I hope to be a support to others once I finally meet good old NED. 

     

    P.S. Is it strange that I don't want to document any of this? I will hopefully ring the bell on March 2nd, and while I will be happy to do it, I don't want anyone taking pictures of it. I just want this whole thing behind me.

     

    -Amy

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    edited February 2017 #8
    So sorry

    Reading your post brought me right back to that horrible time. Don't wear pants at all if you can get by with this, even a fan on those burned areas can give some relief. I just laid in bed with only a shirt on And my legs propped up so air could get to the burns. Domeboro soaks worked for me, lay gauze soaked in water and  domeboro over the burns. My husband helped with those. Lukewarm water only, no warm or hot baths.  I was in hospital for the last days of treatment because my UTI went into sepsis. You can ask for a wound care consult, I got one in hospital and she gave me all kinds of things to try. Most helpful was Aloe Vesta, a foaming cleanser that doesn't sting. I was literally having bowel movements every 15 minutes in spite of morphine and oxycodone for pain, lomotil, and tincture of opium to stop the diarrhea. I started crying with radiation tech one day, I can't remember what she said but I starting bawling to my embarrassment. Just take it one day at a time, one radiation treatment at a time. I think I just was too stubborn to stop or take a break. I kept thinking about my father in law, a Marine who spent four years in the Pacific in WWII. He hardly ever talked about his time which had to be hellish, but I do remember him saying "I never fell out", meaning he never quit marching, fighting, or anything else. Right or wrong I held myself to that standard and I got through. I cried in the bathroom too, didn't want the kids to see. You are not weak if you cry. You really are close to the end and things will get better. 

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    Not strange

    No it's not strange that you don't want to document. It will become a bit of a blur soon and that's good. 

  • rlr000dc
    rlr000dc Member Posts: 51
    No you are not pathetic the

    No you are not pathetic the pain you feel is and will be unbearable for quiet some time. I hate to hear you are going through this. I wanted to quit treatment before it was done but the doctors would not allow it. Try to have at least two ppl helping care for you so they can get time out themselves. I used aloe vera to help cool the stinging. only lay towels around the area keeping them cool by changeing them often.I'm trying to remember the other thing we soaked the towel in? it was liquid and smelled like ashes but worked great, i will get back with you on that. I wasnt able to use toilet paper so i used wet paper towels and dabbed not wiped the area helps. The med ondacset for nasuea and vomiting helps but take it 20 minutes before you eat. i highly recommend getting something for thrush before your last chemo tmt. and begin taking it before chemo. It helped me to use a towel to scream in when i used the toilet, it helped the cartakers ears also! I cried alot even after getting off the toilet. We kept a log of medicine times because of the way everything was happening and with the stress it made it seem like every five minutes more was due. My last week of radiology and chemo i had to use a bed pan because of weakness but found out this was because my blood count was down three pints and had to become hospitalized with a blood transfusion. I was barely able to walk to the bathroom, or get out of the shower from weakness and the pain was more intense with fluids in my port. I guess due to the skin being thinner because of the low blood count. These may be signs you can watch for. I didnt know what to look for.

  • rlr000dc
    rlr000dc Member Posts: 51
    edited February 2017 #11
    almost year later

    Last week i got constipated and Im still not sure why it happened? seems like every three months it just happens. I did remember to go on a liquid diet, after two days unfortunately!  I had 28x radiation and two 96 hr chemo tmts. My last tmt was in june. I went to the doctor hopeing to get my port out but instead learned i have precancerous lesions they will be removing the 28th. I am trying to face it positively but with this last episode makes it hard tothink of the complications that will need to be endured again! All that said I am very happy to find this site and think it will be beneficial to many ppl. Wish i would have found it sooner. Cancer is a hard thing to go through. When you have it you have lots of support. When its through everyones gone. I hope to help someone as it seems we had a hard time what to expect during all this.

  • Pilikia55
    Pilikia55 Member Posts: 17 Member
    Hang in there, Amy!

    You can do it. You CAN do it. It's been 13 yrs., to the day, since my last treatment. I'd almost forgotten it all, but your cry for help, and everyone's responses here, has brought it all back. We share this together, and we are stronger for our common bond. Do everything that everyone has suggested. Everything helps, if only for a few minutes. And know that we all will be thinking of you in the next two weeks. I so wish I had had the support then, that i find here now. My only suggestion, as others have suggested, is stay ahead of the pain. Take it and don't worry. I wish I had asked for and been given more drugs, and solid advice about taking them. Also, don't be discouraged if the pain does not subside immediately when treatment ends. It is gradual, but it comes. It surely comes. Please, let us all know how you fare these next few weeks. Gentle, cooling breezes to you from Hawaii.  

  • mp327
    mp327 Member Posts: 4,440 Member
    rlr000dc said:

    almost year later

    Last week i got constipated and Im still not sure why it happened? seems like every three months it just happens. I did remember to go on a liquid diet, after two days unfortunately!  I had 28x radiation and two 96 hr chemo tmts. My last tmt was in june. I went to the doctor hopeing to get my port out but instead learned i have precancerous lesions they will be removing the 28th. I am trying to face it positively but with this last episode makes it hard tothink of the complications that will need to be endured again! All that said I am very happy to find this site and think it will be beneficial to many ppl. Wish i would have found it sooner. Cancer is a hard thing to go through. When you have it you have lots of support. When its through everyones gone. I hope to help someone as it seems we had a hard time what to expect during all this.

    rlr000dc

    I see that you recently joined us and I want to welcome you.  I hope you are doing well in your recovery from treatment.  However, I read in your post that you are facing surgery on the 28th. for removal of lesions.  Are these anal lesions or located elsewhere?  I ask because at the 2-year post-treatment mark, when I was hoping to hear that everything looked good upon routine follow-up examination by my colorectal doctor, she discovered 3 small anal condylomas (warts or lesions) and told me they had to come out, as they could eventually become cancerous.  I was scheduled for surgery and they were removed.  I feared that recovery would be slow, painful and possibly incomplete, reminiscent of when I was in treatment.  However, I'm happy to say that my recovery was swift and I had no post-op issues.  The condylomas were biopsied and were negative.  I tell you this in hopes that, if this is the type of surgery you are facing, that you will have a positive outlook and the same good results and quickly recovery as I had.  I will be thinking of you and send you my best wishes.  Please let us know how it goes.

    Martha 

  • Lorikat
    Lorikat Member Posts: 681 Member
    edited February 2017 #14
    rlr000dc said:

    No you are not pathetic the

    No you are not pathetic the pain you feel is and will be unbearable for quiet some time. I hate to hear you are going through this. I wanted to quit treatment before it was done but the doctors would not allow it. Try to have at least two ppl helping care for you so they can get time out themselves. I used aloe vera to help cool the stinging. only lay towels around the area keeping them cool by changeing them often.I'm trying to remember the other thing we soaked the towel in? it was liquid and smelled like ashes but worked great, i will get back with you on that. I wasnt able to use toilet paper so i used wet paper towels and dabbed not wiped the area helps. The med ondacset for nasuea and vomiting helps but take it 20 minutes before you eat. i highly recommend getting something for thrush before your last chemo tmt. and begin taking it before chemo. It helped me to use a towel to scream in when i used the toilet, it helped the cartakers ears also! I cried alot even after getting off the toilet. We kept a log of medicine times because of the way everything was happening and with the stress it made it seem like every five minutes more was due. My last week of radiology and chemo i had to use a bed pan because of weakness but found out this was because my blood count was down three pints and had to become hospitalized with a blood transfusion. I was barely able to walk to the bathroom, or get out of the shower from weakness and the pain was more intense with fluids in my port. I guess due to the skin being thinner because of the low blood count. These may be signs you can watch for. I didnt know what to look for.

    OMG!  Your battle sounds so

    OMG!  Your battle sounds so much like mine...  especially screaming into the towel....  I'm five years out and had forgotten that...

  • AmyD1310
    AmyD1310 Member Posts: 59
    edited February 2017 #15
    Mollymaude

    I think I am going to use your father-in-laws words as inspiration to get through the next 8 radiation sessions. I absolutely HAVE TO push through and get to the end, just like the rest of the people here. You are all an inspiration really. I should also be more grateful that the chemo hasn't caused any/many side effects (at least, not yet). Someone else at my radiation oncology center got to ring the bell this morning. Her husband taped it and it was cute. I will be doing that on Thursday, March 2nd, but like I had previously said...no recording it. I noticed Lorikat had forgotten about the screaming in the toilet part of her journey until rlr000dc mentioned it as part of their journey.  I hope I can forget a lot of this some day soon.

    I can't say it enough...this discussion board has been a Godsend to me. I don't remember how I even found it, but so glad I did. Thank you to everyone who has been so kind and supportive, and understanding! 

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    Hang in there

    Amy, you have another day done! I'm so glad you are finding help and support while this is going on. I didn't find the site til after my treatment and wish I'd found it earlier. You can and are doing it. I'm glad my father in law's words have helped. You're close to the end, and I know you won't fall out. It really will become a distant memory and life will get back in perspective again.

    I have a dear friend who had melanoma and then bilateral breast cancer (years ago)who was texting me during my treatment. She accidentally texted me a text meant for her husband about how she was happy she finally was able to pluck a pesky chin hair!! She quickly texted me and said "oops that was meant for my husband, someday soon you'll be back at the place where all you have to worry about is a pesky chin hair". She was telling me she knew I was miserable but life would get back to the everyday details again, and she certainly was right. Thinking of you!

  • rlr000dc
    rlr000dc Member Posts: 51
    mp327 said:

    rlr000dc

    I see that you recently joined us and I want to welcome you.  I hope you are doing well in your recovery from treatment.  However, I read in your post that you are facing surgery on the 28th. for removal of lesions.  Are these anal lesions or located elsewhere?  I ask because at the 2-year post-treatment mark, when I was hoping to hear that everything looked good upon routine follow-up examination by my colorectal doctor, she discovered 3 small anal condylomas (warts or lesions) and told me they had to come out, as they could eventually become cancerous.  I was scheduled for surgery and they were removed.  I feared that recovery would be slow, painful and possibly incomplete, reminiscent of when I was in treatment.  However, I'm happy to say that my recovery was swift and I had no post-op issues.  The condylomas were biopsied and were negative.  I tell you this in hopes that, if this is the type of surgery you are facing, that you will have a positive outlook and the same good results and quickly recovery as I had.  I will be thinking of you and send you my best wishes.  Please let us know how it goes.

    Martha 

    MP327

    yes the removal of the lesions wll be in the same area. Thanks for the infor I am more hopeful now! I can only imagine the emotions that put you through. Im really hateing this is becoming a regular outing to have to dread going to think i could find much better ways to spend my time.lol geesh!

    Rhonda

  • rlr000dc
    rlr000dc Member Posts: 51
    Lorikat said:

    OMG!  Your battle sounds so

    OMG!  Your battle sounds so much like mine...  especially screaming into the towel....  I'm five years out and had forgotten that...

    Lorikat

    And thats a good thing!

    Rhonda

  • rlr000dc
    rlr000dc Member Posts: 51
    AmyD1310 said:

    Thank you...

    ...for the suggestions, kindness and words of encouragement. I know that I will get through this, but my mind keeps flashing the number 9 (for the amount of radiation sessions left), and I start to feel anxious about the pain and misery of the next few weeks. I think that, while having the weekends off from radiation is nice, I tend to have too much time to think about the next week and the pain it will cause. I have been applying the aloe to my "sunburn", as suggested, and that definitely helps. Thanks again for being here and being supportive to those who are still going through this. I hope to be a support to others once I finally meet good old NED. 

     

    P.S. Is it strange that I don't want to document any of this? I will hopefully ring the bell on March 2nd, and while I will be happy to do it, I don't want anyone taking pictures of it. I just want this whole thing behind me.

     

    -Amy

    Amy

    Witch hazel! soak towels in withch hazel and place them AROUND the area with a fan it creates a magical cooling sensation. i also liked the hospital pads the ones with the plastic and cotton along with a white t-shirt atop. i used the shirt to dry my crack (geesh) and the pad to scratch and keep my fingers clean. While i was in the hospital to get my blood count up i wouldnt shake the doctors hand! he was takin back by it but hey, i know my limits! there was no way to keep up with them! They also gave me some kind orange wet soaked cloth in a foil wrapper, nurse said it was vasoline? if so must of had iodine in it but it helped keep stuff from sticking to me.

    Thinking of you

    Rhonda

  • mp327
    mp327 Member Posts: 4,440 Member
    edited February 2017 #20
    rlr000dc said:

    MP327

    yes the removal of the lesions wll be in the same area. Thanks for the infor I am more hopeful now! I can only imagine the emotions that put you through. Im really hateing this is becoming a regular outing to have to dread going to think i could find much better ways to spend my time.lol geesh!

    Rhonda

    Rhonda

    Yes, it was quite a let down for me to hear that I had those lesions and that I would need surgery.  However, the procedure was not nearly as bad as what I had imagined.  I hope that will be true for you too.  It's good that your doctor is on top of things and being vigilant in your follow-ups.  I wish you all the best and I hope you'll let us know how things go.

    Martha

  • rlr000dc
    rlr000dc Member Posts: 51

    So sorry

    Reading your post brought me right back to that horrible time. Don't wear pants at all if you can get by with this, even a fan on those burned areas can give some relief. I just laid in bed with only a shirt on And my legs propped up so air could get to the burns. Domeboro soaks worked for me, lay gauze soaked in water and  domeboro over the burns. My husband helped with those. Lukewarm water only, no warm or hot baths.  I was in hospital for the last days of treatment because my UTI went into sepsis. You can ask for a wound care consult, I got one in hospital and she gave me all kinds of things to try. Most helpful was Aloe Vesta, a foaming cleanser that doesn't sting. I was literally having bowel movements every 15 minutes in spite of morphine and oxycodone for pain, lomotil, and tincture of opium to stop the diarrhea. I started crying with radiation tech one day, I can't remember what she said but I starting bawling to my embarrassment. Just take it one day at a time, one radiation treatment at a time. I think I just was too stubborn to stop or take a break. I kept thinking about my father in law, a Marine who spent four years in the Pacific in WWII. He hardly ever talked about his time which had to be hellish, but I do remember him saying "I never fell out", meaning he never quit marching, fighting, or anything else. Right or wrong I held myself to that standard and I got through. I cried in the bathroom too, didn't want the kids to see. You are not weak if you cry. You really are close to the end and things will get better. 

    Molly

    Yes those dreaded bowel movements! someone said they used immodium? i woulda tried that!

    Rhonda