not alone

RRJ

Hey Everyone

Just diagnosed with stage 3 anal.  Caught it early but it seems aggressive.  Doctors are all over me to do the chemo-radiation, but I am just leaning toward radiation.  A lot of the posts here speak to the broad side-effects of treatment, but I think they are speaking to chemo-radiation and not just radiation alone.  Is or has anyone decided to forego the chemo and just do radiation?  I have advanced HIV as well so I am too scared to do chemo.  I start radiation next week.  Are there any souls out there also on just radiation who can speak to those specific side-effects?  Thanks to all.

 

 

judyv3

RRJ said:

Hey Everyone

Just diagnosed with stage 3 anal.  Caught it early but it seems aggressive.  Doctors are all over me to do the chemo-radiation, but I am just leaning toward radiation.  A lot of the posts here speak to the broad side-effects of treatment, but I think they are speaking to chemo-radiation and not just radiation alone.  Is or has anyone decided to forego the chemo and just do radiation?  I have advanced HIV as well so I am too scared to do chemo.  I start radiation next week.  Are there any souls out there also on just radiation who can speak to those specific side-effects?  Thanks to all.

 

 

RRJ

I am sorry to hear of your diagnosis.  I finished the standard protocol treatment 6 months ago.  I had 32 radiation treatments and 2 rounds of chemotherapy.  I understand your fear of chemo especially in your specific situation.  I don't think I know of anyone on this forum who received radiation-only.  If I were you, I would weigh all of my options and feel comfortable with your decision.  I'm not going to lie - the radiation treatment is pretty brutal, but it is doable.  

We are here for you and I wish you the best going forward.

mp327

RRJ said:

Hey Everyone

Just diagnosed with stage 3 anal.  Caught it early but it seems aggressive.  Doctors are all over me to do the chemo-radiation, but I am just leaning toward radiation.  A lot of the posts here speak to the broad side-effects of treatment, but I think they are speaking to chemo-radiation and not just radiation alone.  Is or has anyone decided to forego the chemo and just do radiation?  I have advanced HIV as well so I am too scared to do chemo.  I start radiation next week.  Are there any souls out there also on just radiation who can speak to those specific side-effects?  Thanks to all.

 

 

RRJ

I'm sorry you have gotten this diagnosis and that you have a reason to join our group.  This is just my opinion, but if I were in your shoes, I would go into this with all guns blazing, opting for both radiation and chemo.  The chemo does not necessarily get rid of the cancer, but it weakens the cancer cells and makes them more responsive to the radiation.  Since you are HIV+, you may only get one round of chemo or your second round may be at a reduced amount--that would be up to your doctors.

I will tell you from my own experience that I would do chemo again in a heartbeat if necessary.  Radiation was the more evil of the two, but it is also what rids us of our cancer.  However, that chemo just adds more insurance that the treatment will be effective.  I dealt pretty good with all of the chemo side-effects, but without going into graphic detail, the burns from radiation were another story.  Mine were at least 2nd. degree, if not worse in a couple of areas.

Regardless of the route you choose to take, I urge you to get on to the website for the National Comprehensive Cancer Network and register.  Then you will be able to access the most up-to-date treatment protocol for anal cancer.  You will find a section that specifically addresses treating patients who are HIV+, so I hope you'll do this before you make your decision.

I wish you all the best and hope you'll let us know what you decide to do.  We will support you no matter what! 

qv62

KarenK57 said:

I am done with treatments :-)

I can hardly believe today was my last treatment. I'm done.  It's been a long hard 32 days.  Honestly I never thought I would make it. But with much thanks and extreme heartfelt gratitude from everyone here I was able to overcome the pain andconfusion and take my last radiation treatment.   I also was very fortunate enough to have my son and his family come spend a few days with me. And my beautiful daughter who helped the best she could.  And on top of that my super wonderful amazing sis in law from NY came to stay the week.   I thank the Lord above for giving me the strength to finish especially with all these wonderful people by my side. And of course the strength I got from my wonderful husband throughout this whole thing.  Love to all my friends and family xxoo

KarenK57

Congratulations ! So glad you are finished, I have not been on the board this past week as I have felt so weak these past few days I never logged on to even read my e-mail or I would have congratulated you earlier. How are you feeling ? I hate to say it but I have felt worse this past week than I did during treatment or my hospitalization. I have been so weak everyday, I stayed in bed till mid afternoon (totally out of charachter for me) then took a shower, put on clean pjs and back to resting. Today is the first day I have had any strenght at all. Hope you are doing better !

qv62

KarenK57 said:

I am done with treatments :-)

I can hardly believe today was my last treatment. I'm done.  It's been a long hard 32 days.  Honestly I never thought I would make it. But with much thanks and extreme heartfelt gratitude from everyone here I was able to overcome the pain andconfusion and take my last radiation treatment.   I also was very fortunate enough to have my son and his family come spend a few days with me. And my beautiful daughter who helped the best she could.  And on top of that my super wonderful amazing sis in law from NY came to stay the week.   I thank the Lord above for giving me the strength to finish especially with all these wonderful people by my side. And of course the strength I got from my wonderful husband throughout this whole thing.  Love to all my friends and family xxoo

KarenK57

Congratulations ! So glad you are finished, I have not been on the board this past week as I have felt so weak these past few days I never logged on to even read my e-mail or I would have congratulated you earlier. How are you feeling ? I hate to say it but I have felt worse this past week than I did during treatment or my hospitalization. I have been so weak everyday, I stayed in bed till mid afternoon (totally out of charachter for me) then took a shower, put on clean pjs and back to resting. Today is the first day I have had any strenght at all. Hope you are doing better !

KarenK57

healing blues

OK now I'm on the healing end.....how come I feel like crap.  I can't sleep.....arms tingle all the time.  One minute I'm cold the next I'm hot.  I've got no energy. Depressed all the time.  Where is the woman I was before all this ?    I don't want to do anything but I hate sitting around. I know I should be happy and glad I'm on the healing but I'm miserable and never feel good.   Every time I eat I feel yucky.  I keep losing weight. I look terrible and crying all the time.  I need to know is all this normal.  Thanks everyone for being here during my ups and downs. 

eihtak

KarenK57 said:

healing blues

OK now I'm on the healing end.....how come I feel like crap.  I can't sleep.....arms tingle all the time.  One minute I'm cold the next I'm hot.  I've got no energy. Depressed all the time.  Where is the woman I was before all this ?    I don't want to do anything but I hate sitting around. I know I should be happy and glad I'm on the healing but I'm miserable and never feel good.   Every time I eat I feel yucky.  I keep losing weight. I look terrible and crying all the time.  I need to know is all this normal.  Thanks everyone for being here during my ups and downs. 

KarenK57

Hi, I was just skimming through some posts today and had a little time to respond.  Congratulations on the completion of this horrific treatment.  I am now approaching 3 1/2 hrs post treatment myself! 

I used to search for the woman I was prior to all this but I think she remains in my past.....that used to bother me but not anymore, in fact I actually favor the new me now, but it took time to get to that point.  Keep in mind that chemo/rad sent your body to hell and back, and if you weren't already, also put it into a state of immediate menopause vs the otherwise normal process.  That may account for the hot/cold, depression, sleep problems, etc.  Talk to your doctor, maybe not even your onc but a gyn or family doctor about what may help.  I am also in treatment for breast cancer so my options are limited along those lines but have found that exercise helps tremendously.  In the beginning start slow, like short walks and stretches, be careful not to overdue as healing from this takes more time than the treatment and really is on-going . 

I wasn't able to go back to work but a year after treatment I did go back to school.  I had never graduated from college so thought, why not!  I started with just one simple on line class and am now taking about 9cr a semester, (still pretty light schedule).  I should graduate in about a year and a half now.  I also volunteer at a local community center a couple days a week.  I just had my 7th grandson born a couple days ago so am lucky to be able to help with them occasionally as well. 

What I'm getting at is, what your feeling is all normal and it won't be forever, if in a couple years you're still miserable, then seek help, but for now just let your body work its way out of this shock its been in and get back on track.  Try to eat small amounts at a time as your digestive system is sensitive now.  I bet you don't look as "yucky" as you say either, but I do remember feeling "yucky" too.  Think of something positive you want to do in a few weeks and concentrate on making that happen.  Its a lot of baby steps that will eventually get you where you need to be.

I will keep you in my thought for continued healing as you move forward, (along with some restful days on the way).

Katheryn

jcruz

KarenK57 said:

healing blues

OK now I'm on the healing end.....how come I feel like crap.  I can't sleep.....arms tingle all the time.  One minute I'm cold the next I'm hot.  I've got no energy. Depressed all the time.  Where is the woman I was before all this ?    I don't want to do anything but I hate sitting around. I know I should be happy and glad I'm on the healing but I'm miserable and never feel good.   Every time I eat I feel yucky.  I keep losing weight. I look terrible and crying all the time.  I need to know is all this normal.  Thanks everyone for being here during my ups and downs. 

blues

I think what you're feeling is totally normal.  It all sounded very familiar to me.  I felt like crap for quite a while after the end of treatment.  I found gradual improvement as well as occasional setbacks and I didn't go back to work until 4 months after I was done (a total of 7 months away from my job).  I am now 1 3/4 yrs. NED.  I think that Katheryn said very well some of the things I would have so I won't repeat.  Give yourself time to feel like crap.  Don't try to talk yourself out of it and don't let anyone else get in your head with words like "You should be happy. You made it through treatment. Etc., etc."  Nobody except those who have been through this knows what it's like and we all have had different experiences of illness and recovery.

I definitely mourned the loss of the woman I used to be.  I don't think I'm quite there with reconciliation with this new me.  I've been in therapy for over a year and recently began taking anti-depressants after I sunk into a black hole I just couldn't climb out of even with a wonderful therapist's help.  Other people have also gone in for counseling or have found support groups to be helpful.  If your feelings don't change as you begin to heal physically I strongly suggest that you seek some kind of relief, whether it's individual or group therapy or medication.

Take care

Janet

qv62

KarenK57 said:

healing blues

OK now I'm on the healing end.....how come I feel like crap.  I can't sleep.....arms tingle all the time.  One minute I'm cold the next I'm hot.  I've got no energy. Depressed all the time.  Where is the woman I was before all this ?    I don't want to do anything but I hate sitting around. I know I should be happy and glad I'm on the healing but I'm miserable and never feel good.   Every time I eat I feel yucky.  I keep losing weight. I look terrible and crying all the time.  I need to know is all this normal.  Thanks everyone for being here during my ups and downs. 

Karenk57

If it weren't for the not sleeping and tingling arms I would have thought I'd written your post myself. I have no energy whatsoever, can hardly eat, only leave the house for doctor appointments, feel so weak whenever I stand up, feel depressed thinking I'll never feel good again or get my old life back, hot and cold on and off, and yes generally yucky . I know this doesn't help you feel any better but I just want to let you know you are not alone. I saw both my chemo doctor and radiologist last week, both said I need hydration, nutrition and rest. I am getting very depressed as I feel I am missing the whole summer, I love the beach and have not been once, can't go on a road trip , can't even get in my car and go to Target. I work in the school district and hope I can make it back by September.  Please keep me posted on your recovery, virtual hugs out to you. 

judyv3

qv62 said:

Karenk57

If it weren't for the not sleeping and tingling arms I would have thought I'd written your post myself. I have no energy whatsoever, can hardly eat, only leave the house for doctor appointments, feel so weak whenever I stand up, feel depressed thinking I'll never feel good again or get my old life back, hot and cold on and off, and yes generally yucky . I know this doesn't help you feel any better but I just want to let you know you are not alone. I saw both my chemo doctor and radiologist last week, both said I need hydration, nutrition and rest. I am getting very depressed as I feel I am missing the whole summer, I love the beach and have not been once, can't go on a road trip , can't even get in my car and go to Target. I work in the school district and hope I can make it back by September.  Please keep me posted on your recovery, virtual hugs out to you. 

Karenk57 and qv62

Judy here, 6 months post treatment.  Bottom line, it sucks.  Some days I get so angry that this happened and I will never be the same.  I spend so much time convincing everyone that I feel great, that I feel guilty when I say that I don't.  I do see a psychiatrist.  I have for years for anxiety issues.  I can't even say that helps.  I actually haven't had anxiety issues since the radiation stopped.  I had a hard time just getting myself on that effing table every day.  Now that's over and I'm doing pretty good - anxiety wise.  

I can't remember when I took my first walk outside after treatment.  All I know is, I didn't get very far.  Everything is difficult.  But I do promise that you will turn the corner.  You won't be the person you were.  My daughter was 20 weeks pregnant with my first grandchild and found out that he had spina bifida.  She had to mourn the child she thought she was going to have.  Now he's 18 months old and absolutely delightful.  He has issues.  Coincidentally, he will have bowel issues so he and I have that to share.

I went back to work (against the advice of my doctor) 5 weeks after treatment ended.  It was only part time.  It was exhausting.  But I've built up to nearly full time (I work for myself so I have some flexibility with my hours).

Just remember to hydrate (so important), eat (whatever tastes good - I eat greek yogurt a lot), and put yourself first.  This is a difficult one for most of us I think.

I send you good thoughts and cyber hugs.  I know how you feel.

Judy

qv62

judyv3 said:

Karenk57 and qv62

Judy here, 6 months post treatment.  Bottom line, it sucks.  Some days I get so angry that this happened and I will never be the same.  I spend so much time convincing everyone that I feel great, that I feel guilty when I say that I don't.  I do see a psychiatrist.  I have for years for anxiety issues.  I can't even say that helps.  I actually haven't had anxiety issues since the radiation stopped.  I had a hard time just getting myself on that effing table every day.  Now that's over and I'm doing pretty good - anxiety wise.  

I can't remember when I took my first walk outside after treatment.  All I know is, I didn't get very far.  Everything is difficult.  But I do promise that you will turn the corner.  You won't be the person you were.  My daughter was 20 weeks pregnant with my first grandchild and found out that he had spina bifida.  She had to mourn the child she thought she was going to have.  Now he's 18 months old and absolutely delightful.  He has issues.  Coincidentally, he will have bowel issues so he and I have that to share.

I went back to work (against the advice of my doctor) 5 weeks after treatment ended.  It was only part time.  It was exhausting.  But I've built up to nearly full time (I work for myself so I have some flexibility with my hours).

Just remember to hydrate (so important), eat (whatever tastes good - I eat greek yogurt a lot), and put yourself first.  This is a difficult one for most of us I think.

I send you good thoughts and cyber hugs.  I know how you feel.

Judy

judyv3

Judy, blessings to you and your daughter on your grandchild, I hope you are all adjusting. My friend had her first grandchild this past week, she wasn't due until the end of Sept, the baby has been in critical care weighing 3 lbs but losing weight, she has pneumonia, an infection is on a respirator and has a heart valve issue, it is so hard to understand these things and I know it puts my problems in a reality check which is the back burner to all of their issues. I so appreciate the confidence that I will get stronger. I try everyday to get out of bed and wind up right back in it, I am just so weak and fatigued, I am trying so hard to hydrate and forcing myself now to eat. I actually start to feel better in the evening but just want to wake up one day and feel good. All I do is lay around, thankfully I have a wonderful support system but I really need to get my act together to just get through some paperwork and phone calls, I keep saying tomorrow but it hasn't happened yet. .

judyv3

qv62 said:

judyv3

Judy, blessings to you and your daughter on your grandchild, I hope you are all adjusting. My friend had her first grandchild this past week, she wasn't due until the end of Sept, the baby has been in critical care weighing 3 lbs but losing weight, she has pneumonia, an infection is on a respirator and has a heart valve issue, it is so hard to understand these things and I know it puts my problems in a reality check which is the back burner to all of their issues. I so appreciate the confidence that I will get stronger. I try everyday to get out of bed and wind up right back in it, I am just so weak and fatigued, I am trying so hard to hydrate and forcing myself now to eat. I actually start to feel better in the evening but just want to wake up one day and feel good. All I do is lay around, thankfully I have a wonderful support system but I really need to get my act together to just get through some paperwork and phone calls, I keep saying tomorrow but it hasn't happened yet. .

qv62

I mentioned my grandson only because we have to adjust much as my daughter adjusted to a new reality.  People say to me "first your grandson and now cancer".  My grandson is a blessing, cancer is a curse - apples and oranges.  My thoughts and prayers go to your friend and that precious baby.  

I spent much time in bed as well.  We all heal differently.  You will heal better if you eat - but you know that!  I made the mistake of thinking that hydration meant drinking water only (duh).  One of my oncology nurses set me straight.  She said drink anything that you like.  I drank a lot of ginger ale, it just tasted good.  Throw those healthy eating thoughts out the window.  Eat what tastes good - ice cream, chips - whatever.

P.S.  Tonight that grandson of mine took his first steps!  Thankfully my daughter lives two blocks away and called us to come over and watch.  It was 7:30 and of course I was in my pjs, ready for bed!

Wishing you a wonderful day.

KarenK57

dr sees no more cancer

Went to Dr yesterday for my checkup. He doesn't see or feel anymore cancer.   He will use a scope in a few weeks because it's still too sore down there.  The answer to my weakness was In my blood work.  My hemoglobin red blood count is low. That is why I am so weak that I can't even walk around Walmart.  I have no energy and even though its 90 degress out I'm so cold.   He said its gonna take maybe a couple months to get it back to normal.  I want to work so bad. Since ive been having trouble digestion food also he gave me a pill to help move food along. Im not eating enough and losing too much weight.  So this isn't helping my situation. So there's good news and OK news to share.  Those of you who are weak like me it just might be your red blood count is low too.  Love and prayers to you all 

eihtak

KarenK57 said:

dr sees no more cancer

Went to Dr yesterday for my checkup. He doesn't see or feel anymore cancer.   He will use a scope in a few weeks because it's still too sore down there.  The answer to my weakness was In my blood work.  My hemoglobin red blood count is low. That is why I am so weak that I can't even walk around Walmart.  I have no energy and even though its 90 degress out I'm so cold.   He said its gonna take maybe a couple months to get it back to normal.  I want to work so bad. Since ive been having trouble digestion food also he gave me a pill to help move food along. Im not eating enough and losing too much weight.  So this isn't helping my situation. So there's good news and OK news to share.  Those of you who are weak like me it just might be your red blood count is low too.  Love and prayers to you all 

KarenK57......

Glad to hear at least you have some answer as to your concerns.  I'm curious, did your doctor suggest taking an iron supplement.  During and for about a year after treatment I took 2 (ferrous sulfate) per day and it made a BIG difference. I am now 3+ years post and take just one per day but if I run out and go a few days without definately notice a drop in energy level. Just a thought to consider.

Katheryn

KarenK57

Healing but still hurting

Hi 4 weeks of healing and feeling pretty good.  Stilll haven't gone back to work so going a little crazy.  Going for a lot of walks everyday to get my strength back. My anal area is still really sore.  How long does this last?  My morning bowel movements are painful and uncontrollable.  During the day I have good days and bad days.   Some days I have to stay close to home.  This is why I havent gone back to work yet.  Tomorrow I go see my dr. for an exam.  Hopefully all looks good.  I am eating better and put on 4 pounds so the dr. will be happy about that.   I lost 15 but feel like I gained 10 years.  

I hope everyone is doing well.  Haven't been on for awhile. 

mp327

KarenK57 said:

Healing but still hurting

Hi 4 weeks of healing and feeling pretty good.  Stilll haven't gone back to work so going a little crazy.  Going for a lot of walks everyday to get my strength back. My anal area is still really sore.  How long does this last?  My morning bowel movements are painful and uncontrollable.  During the day I have good days and bad days.   Some days I have to stay close to home.  This is why I havent gone back to work yet.  Tomorrow I go see my dr. for an exam.  Hopefully all looks good.  I am eating better and put on 4 pounds so the dr. will be happy about that.   I lost 15 but feel like I gained 10 years.  

I hope everyone is doing well.  Haven't been on for awhile. 

Hi Karen

I'm glad you gave us an update and am glad to hear you are feeling better.  The soreness may take awhile to diminish.  I recommend using some wipes instead of toilet paper, as it is way too abrasive.  Mornings--still my worst time of the day and sometimes unpredictable--and I'm almost 6 years out of treatment.  However, when I think back to the beginning of my recovery period, I realize how far I've come since then.  Do not get discouraged--things will get better with time.  Watch your intake of fibrous foods and if your bowels become too overactive, give them a break by going on a low residue diet for a few days.  That diet would include yogurt, cheese, eggs, puddings, creamed soups--things that don't have much fiber. 

Keep your chin up!  Soon things will be much improved and life will seem normal again!

Ouch_Ouch_Ouch

KarenK57 said:

Healing but still hurting

Hi 4 weeks of healing and feeling pretty good.  Stilll haven't gone back to work so going a little crazy.  Going for a lot of walks everyday to get my strength back. My anal area is still really sore.  How long does this last?  My morning bowel movements are painful and uncontrollable.  During the day I have good days and bad days.   Some days I have to stay close to home.  This is why I havent gone back to work yet.  Tomorrow I go see my dr. for an exam.  Hopefully all looks good.  I am eating better and put on 4 pounds so the dr. will be happy about that.   I lost 15 but feel like I gained 10 years.  

I hope everyone is doing well.  Haven't been on for awhile. 

Suggestions

KarenK57:

You and I are on nearly the same timetable. My last radiation dose was on July 8th, but I had to stop several times along the way due to the severe burn pain and low WBC values with neutropenic fevers. I was hospitalized after both chemotherapy rounds. I have been extremely weak since it all ended and have lost more weight afterwards than before. I think it's because of the healing that's slowly going on all over inside me. All those cells are crying out for nutrition and taking it from my muscles.

I suggest that you get a referral to a Registered Dietician if you haven't yet. The one I saw had many great tips for me. Continue to go to the infusion center as needed for more hydration or for nausea that doesn't respond to oral meds. Just because you are finished with treatment doesn't mean that you must stop utilizing their services if you need them. Also, see if any of the physical therapy sources around you have a specific cancer rehabilitation program and get a referral. My evaluation appointment is set for next Tuesday. They will assess my physical state as well as cognitive state (I have "chemo-brain" for sure) and emotional state (psychological therapy is available through them, too).

Fingers tightly crossed for us both!

Addendum: Physical therapy will help to increase our appetites, rebuild those depleted muscles, and help us to sleep better at night.

Further addendum: Many insurance plans will allow for a wig, if that applies to you. Ask the oncology office or the infusion center where you can go locally or for the name of a good online source.

eihtak

Ouch_Ouch_Ouch said:

Suggestions

KarenK57:

You and I are on nearly the same timetable. My last radiation dose was on July 8th, but I had to stop several times along the way due to the severe burn pain and low WBC values with neutropenic fevers. I was hospitalized after both chemotherapy rounds. I have been extremely weak since it all ended and have lost more weight afterwards than before. I think it's because of the healing that's slowly going on all over inside me. All those cells are crying out for nutrition and taking it from my muscles.

I suggest that you get a referral to a Registered Dietician if you haven't yet. The one I saw had many great tips for me. Continue to go to the infusion center as needed for more hydration or for nausea that doesn't respond to oral meds. Just because you are finished with treatment doesn't mean that you must stop utilizing their services if you need them. Also, see if any of the physical therapy sources around you have a specific cancer rehabilitation program and get a referral. My evaluation appointment is set for next Tuesday. They will assess my physical state as well as cognitive state (I have "chemo-brain" for sure) and emotional state (psychological therapy is available through them, too).

Fingers tightly crossed for us both!

Addendum: Physical therapy will help to increase our appetites, rebuild those depleted muscles, and help us to sleep better at night.

Further addendum: Many insurance plans will allow for a wig, if that applies to you. Ask the oncology office or the infusion center where you can go locally or for the name of a good online source.

Ouch.....(and all)

You are wise to do the physical therapy! I was hospitalized during treatment as well and by the end was in a short term nursing home on TPN (an IV nutritional supplement via my port). I too had lost a lot of weight and muscle tone at that point. I dreaded the physical therapy there, (although mostly because of their lack of understanding of current anal cancer treatment and side effects), but....once I began to heal, the exercise program was a big help in getting me back on my feet. I was discharged about 4wks post treatment, (I had some complications with my ostomy) but continued my exercise routine. My appetite returned, and I felt both emotionally and physically a "little" more like my self each day.

katheryn

judyv3

KarenK57 said:

Healing but still hurting

Hi 4 weeks of healing and feeling pretty good.  Stilll haven't gone back to work so going a little crazy.  Going for a lot of walks everyday to get my strength back. My anal area is still really sore.  How long does this last?  My morning bowel movements are painful and uncontrollable.  During the day I have good days and bad days.   Some days I have to stay close to home.  This is why I havent gone back to work yet.  Tomorrow I go see my dr. for an exam.  Hopefully all looks good.  I am eating better and put on 4 pounds so the dr. will be happy about that.   I lost 15 but feel like I gained 10 years.  

I hope everyone is doing well.  Haven't been on for awhile. 

KarenK57

So glad to hear that you are on the other side of this disaster.  As far as the sore butt - I still (7 months since treatment ended) use Aquaphor on toilet paper when I wipe.  And I keep myself covered in Aquaphor "down there".  I think it has really helped with the soreness.  I tend to be constipated so I have to take Miralax and a stool softener every day.  This is actually good because I know pretty much when I will go.  I was extremely careful about what I ate for several months.  I am now adding more things to my diet to see how I tolerate it.  

You will continue to feel better and learn to adjust to your new normal like we all have.  I am still battling low white blood cell count.  It bothers the doctors more than me.  I have been pretty healthy (knock wood) and been exposed to all kinds of things.  Right now I have two young adult children in the house with mono.  I had blood work done yesterday and asked that they check for mono.  I feel okay, but you never know.  

My best to you!  Keep healing and feeling better and better! 

Ouch_Ouch_Ouch

eihtak said:

Ouch.....(and all)

You are wise to do the physical therapy! I was hospitalized during treatment as well and by the end was in a short term nursing home on TPN (an IV nutritional supplement via my port). I too had lost a lot of weight and muscle tone at that point. I dreaded the physical therapy there, (although mostly because of their lack of understanding of current anal cancer treatment and side effects), but....once I began to heal, the exercise program was a big help in getting me back on my feet. I was discharged about 4wks post treatment, (I had some complications with my ostomy) but continued my exercise routine. My appetite returned, and I felt both emotionally and physically a "little" more like my self each day.

katheryn

Cancer rehab benefit

eihtk:

 

I am glad to hear that you benefited from cancer rehab and that your appetite returned. I didn't have to get TPN, thank goodness, but I did get 2 units of whole blood and 2 units of platelets during that last hospitalization. I felt like an engorged tick, but at least the severe exterior burns started to heal immediately afterwards and the degree of pain went from Fentanyl patch w/morphine to Fentanyl patch w/Percoset.

I know that many people have had a far worse time than I - sorry that you were one of them.