not alone

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.

 

 

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.

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

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 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. 

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 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. 

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 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. .

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 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 

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 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. 

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 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.

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

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

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.