CancerCompass message board discussion started by g8orgal79 on 4/25/2008 http://www.cancercompass.com/message-board/message/all,23432,0.htm Mon, 01 Dec 2008 00:00:00 GMT Mon, 01 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Well today was radiation treatment number 9 and hubby is not doing so well.  I call him every day from work at about 9:30 to make sure he is up and eats breakfast before he has to take his meds for his ethyol shot.This morning I called him and he tells me his throat is bleeding and he was coughing up what he calls "pea sized bits of hamburger" which was white and yellow yucky stuff. He is almost crying (my strong man who wouldnt dream of shedding a tear) and is so miserable he doesnt know how he is going to continue.Turns out he has thrush AND mucositis.  We left the cancer center loaded with prescriptions for the liquid hydrocodone, nystatin and magic mouthwash.  Also had to get some cream for the rash that he is getting at the site where he gets his ethyol shots.  It is taking longer and longer for him to eat a meal from the pain so I imagine it wont be too much longer before he is using the peg tube to get his nutrition.I knew that it would bad and very bad at that, I guess neither one of us was expecting it to happen this quickly.  He tried to say today, I think they are using too much radiation on me!! Bless his heart, my heart breaks for him and I just want to help him feel better, though there doesnt seem to be a whole lot I can do for him except pump meds into him.  Now we are totally scared about the upcoming week.  He has 9 more treatments and then he will be going twice a day.  The road is still so long and he is already miserable I just dont know what to do anymore.  Thankfully he is sleeping now, so hopefully that is some relief for him (but his snoring is AWFUL!!) I also get jealous of my friends now.  I get angry hearing about their normal, happy lives when we are living in this hell with the end not yet in sight.  I find myself snapping at my friend for saying ughhhh I hate doing laundry or I am so stressed out with the kids when I sit there thinking, I WISH that the worst of my problems.  I end up lashing out and then feel horrible afterwards but I just hate it!  Does that make any sense?Anyways, I feel better now after letting some of that out.  I try so hard to stay positive for my hubby and sometimes I guess I just need to let it go.  God Bless all those who are going through this or have been through it and survived.  I am trying to use these positive stories to think about when I feel like falling apart, and I'm not even the one getting the treatments!!! Thanks for listening, end rant.Brandi g8orgal79 Fri, 25 Apr 2008 00:00:00 GMT Hi Brandi, My husband has one more week of radiation and one more chemo next week. Last week he was just impossible to live with. He was in a lot of pain and was miserable. He also thought the doctors were giving him to much radiation and were "frying" his throat. He hardly had his voice. He was very irritable and nasty about everything. I was getting so upset and a little depressed. Last Sunday my daughters dragged me out to dinner just to have a little time away from him (I felt guilty for going, but it felt good to feel a little normal.) THis week his attitude is so much better. He's still in pain and he knows next week will be difficult, but I guess he's thinking it's almost over. I'm sure your husband will feel the same way when he gets more into his treatments. When he hits the half way mark, then he can start counting down and the end will be in sight. It's good for you to vent because all of us caregivers feel that way at one time or another. You just want life to be normal again. The good thing that comes out of this is that I don't let small problems bother me. I feel that nothing is more important than your health. To have that is the greatest gift of all. Hang in there and you and your husband will come through fine. Carol capp519 Fri, 25 Apr 2008 00:00:00 GMT i understand how you are feeling.  it is hard for me to also see my big guy weak and in so much pain.  he has been a good patient though but somedays (like last nite) he says he is tired of feeling like crap and feels like it will never be over.  he finished treatment on tuesday and now feels like the time is dragging by since he doesn't leave the house everyday.it is hard to see your friends and co-workers go on with their normal lives...and many just don't get it if they haven't visited you at home and see for themselves what it is like.  my family (who live an hour away) will say come for dinner...if he needs to go lay down it will be fine...ha ha ha..they dont realize we would have to bring syringes, cans of food, bottled water and a box of tissues...then he would have the embarrassment of coughing and hacking (and sometimes throwing up) while the rest of us "enjoy dinner"!  many of my friends don't visit...perhaps it is out of fear...not knowing what to say or do...but it makes this illness very isolating.we want our lives back.reading posts from the people who have made it and are back to living a normal life are what gives us hope.hang in there...WE CAN DO IT~meeshP.S. sounds like he should just start using the PEG - it made a world of difference for my S.O. it was one less thing to struggle with everyday and he felt better because he was getting the protein he needed.  meesh Sat, 26 Apr 2008 00:00:00 GMT Hi Brandi, I am sorry to hear what you and your husband are going through.  Been there.  My husband died of stomach cancer on February 22.  He was a handsome 215 lb. man who was emaciated to about 120 lbs., who people thought was my father.  He never complained once even though he could not eat for a long time.  We did put the J tube in, but he only survived 9 days after that.  Our lives were totally disrupted and I felt the same way you do.  But you know what, my husband and I became even closer during this journey and I would see the pain in his eyes because of how his illness was affecting me.  Believe me, your husband knows it is hard on you. You can come to this board and rant all you want, we understand and you have to let it out.  Just make him comfortable and express your love any way you can.  Believe me, I miss being my husband's caregiver even though I know he is in a better place and at peace. God Bless You,Diane Anniedips Sat, 26 Apr 2008 00:00:00 GMT  On 4/25/2008 g8orgal79 wrote:Well today was radiation treatment number 9 and hubby is not doingso well.  I call him every day from work at about 9:30 to makesure he is up and eats breakfast before he has to take his meds for hisethyol shot.This morning I called him and he tells me his throatis bleeding and he was coughing up what he calls "pea sized bits ofhamburger" which was white and yellow yucky stuff. He is almost crying(my strong man who wouldnt dream of shedding a tear) and is somiserable he doesnt know how he is going to continue.Turns outhe has thrush AND mucositis.  We left the cancer center loadedwith prescriptions for the liquid hydrocodone, nystatin and magicmouthwash.  Also had to get some cream for the rash that he isgetting at the site where he gets his ethyol shots.  It is takinglonger and longer for him to eat a meal from the pain so I imagine itwont be too much longer before he is using the peg tube to get hisnutrition.I knew that it would bad and very bad at that, Iguess neither one of us was expecting it to happen this quickly. He tried to say today, I think they are using too much radiation onme!! Bless his heart, my heart breaks for him and I just want to helphim feel better, though there doesnt seem to be a whole lot I can dofor him except pump meds into him.  Now we are totally scaredabout the upcoming week.  He has 9 more treatments and then hewill be going twice a day.  The road is still so long and he isalready miserable I just dont know what to do anymore.  Thankfullyhe is sleeping now, so hopefully that is some relief for him (but hissnoring is AWFUL!!) I also get jealous of my friendsnow.  I get angry hearing about their normal, happy lives when weare living in this hell with the end not yet in sight.  I findmyself snapping at my friend for saying ughhhh I hate doing laundry orI am so stressed out with the kids when I sit there thinking, I WISHthat the worst of my problems.  I end up lashing out and then feelhorrible afterwards but I just hate it!  Does that make any sense?Anyways,I feel better now after letting some of that out.  I try so hardto stay positive for my hubby and sometimes I guess I just need to letit go.  God Bless all those who are going through this or havebeen through it and survived.  I am trying to use these positivestories to think about when I feel like falling apart, and I'm not eventhe one getting the treatments!!! Thanks for listening, end rant.BrandiHi BrandiYouare only human.  You feel what you feel.  Great that you canlet it out.  I've been there, done that.  My husband finishedtreatment in Dec. and the whole ordeal was hell.  But, it does getdone with and your husband will get well.   Rememberwhen you got married and they said "for better and for worse, insickness and in health" ?  Well guess which part this is. You will get through this and you will have the better part again.Karenok  karenok Sat, 26 Apr 2008 00:00:00 GMT Rant on, Brandi.  I know how your husband feels, I was there not long ago. I dont know if its possible to feel worse than you do the last two weeks of treatment and the couple or three weeks following the end of treatment. Hopefully, the pain meds and the nystatin will give him (and you) some much needed relief. I'm thankful that my wife was strong enough to deal with my treatment and recovery, I honestly dont think I could have done it without her.All of you caregivers are saints in my book. You get us to out appointments, ask the docs the questions we are to sick to remember to ask, make sure we eat and drink, clean up after us and give us the love and support we need. (and you put up with our vile attitude we have because we feel so crappy). My hat's off to all of you. Thank you.Best wishes...Mike micromisterphone Sat, 26 Apr 2008 00:00:00 GMT  On 4/26/2008 micromisterphone wrote:Rant on, Brandi.  I know how your husband feels, I was there not long ago. I dont know if its possible to feel worse than you do the last two weeks of treatment and the couple or three weeks following the end of treatment. Hopefully, the pain meds and the nystatin will give him (and you) some much needed relief. I'm thankful that my wife was strong enough to deal with my treatment and recovery, I honestly dont think I could have done it without her.All of you caregivers are saints in my book. You get us to out appointments, ask the docs the questions we are to sick to remember to ask, make sure we eat and drink, clean up after us and give us the love and support we need. (and you put up with our vile attitude we have because we feel so crappy). My hat's off to all of you. Thank you.Best wishes...Mike  Hi  brandi;  you  are  having  a really  bad  time  i  know.  There  are people  that  care  about  you and  your  husband.  I  had  radiation for  7  weeks  everyday  for  brest  cancer;  i  layed  there  and  cryed  sometimes  at  treatment;  that  was  in  0-1;  now  i  just  had  milignant  cancer  removed  from  my  lip  also  haveing  some  trouble  with  my  throat  so  more  test;  girl  i  tell  ya;;  i  dont  know  why  these  things  happen  i  feel  like  i  just  cant  take  it  some  days  ya  know  i  dont  know  what  they  will  find  next!  My  faith  in  god  is  getting  me  through it  all.  I  did  not  do  chemo.  So  far;           You  can  vent  to  me  anytime;  i;am  here  for  you;  you  are  both  in  my  prayers;  i  know  it  is  so  hard  for  you to  see  your  husband  so  ill.  You  sound  like  a  very  loveing  wife;  you  hang  in  there  okay?   Be  blessed  your  friend   mary  fairydust Sat, 26 Apr 2008 00:00:00 GMT Hi Brandi:Cancer sucks.  I'm in your shoes too and really get it.  We are heading into my husbands last treatment (#2 of the adjuvant chemos) and are dragging our feet big time.  We've been over every possible bit of the road from elation to misery.  All along I remind him that I'm going thru it too.  I also remind myself that this isn't the husband I know.  That he is physically and psychologically comprimised and that he'll come back to me.  So, when I'm just so ticked at the whole situation, I call a neighbor friend and let it out.  I have so many who love me and are willing to hold me while I cry.  But, you only need one.  Just one friend who you can go to, get a hug, let out all the tears, rant on and on and then go home.  Tell them you need this and they will be there for you.I find that so many people want to help and they just don't know how.  They haven't been in my shoes so they aren't sure.  When they offer help, even the smallest of things, I take it.  Not because I need their help but because they need to help.  Sometimes this means listening to them go on about their every day things, like you listen to too.  I remind myself that they are looking for the same normalcy I am.   Hang on, its a bumpy road.Mediator   Mediator Sun, 27 Apr 2008 00:00:00 GMT Hi Brandi, The whole thing sucks - there's no easy way out. My hubbie's a year out now, and it was a tough road. Most don't understand just how tough until they have to face it themselves. I spent most of my hubbie's treatment alone for this reason. I was so angry that he was sick, and overwhelmed with all I had to face - full-time job, 2 yr old, etc., by myself  - no family on the west coast. You got to remember that as bad as this is, this is his shot at a cure. My hubbie's doctors told us  - we're going kill you and bring you back and that's what it seemed like but now a year out, he's never looked better and he feels great - his side effects are almost nothing and you'd never know what he'd been through a year ago. If you ever want to talk, I'd be willing to -- I talk with a lot of people via phone facing what I was facing last year. Just let me know. Julie Julie21 Sun, 27 Apr 2008 00:00:00 GMT Here's a suggestion from my wife to all of the caregivers out there. When I was going through treatment she went and had a massage every couple of weeks. If at all possible, she recommends it highly. It was a little time just for her where she could get away from cancer and me for an hour. Your loved one is going through a terrible thing right now but so are you. Don't forget to take care of yourself. Even if you can't manage a massage, pamper yourself every now and then somehow (a hot bubble bath, a long nap, a good book, etc...). It'll help keep you sane.Good Luck!Joe  Defjoeb Mon, 28 Apr 2008 00:00:00 GMT Brandi, you must stop being so hard on yourself.  You are going to ride the roller coaster of your life.  Just hang on tight, and you're going to get through it.  Take time for yourself, try to understand that none of the 'attitude' is supposed to be directed toward you.  Unfortunately, they say we hurt the ones we love the most.  So, just take a deep breath.  Come here for support, and hold your head up high. Take care - Babzilla Babzilla Mon, 28 Apr 2008 00:00:00 GMT Thank you all for your words of kindness and encouragement.  After reading all the messages I felt better than I have in days and that is saying alot. I just wish I could pass the same feeling onto Phillip.  It is nice to have people who understand you which is not something I am finding a lot of in my everyday life. I find myself talking about this board all the time with my sister in law (Phillip's co-caregiver so to speak while I am at work) and all the info has helped so much.  I even told Phillip how so many of  you who have beat this feel better now than before the cancer.  I think that has given him a bit of hope which is nice :)Now we are trying to conquer mouth sores (which I have read on here about the glutamine but the nusres at the cancer center said NO until he sees the dr tomorrow and gets approval from him)  For now they are telling us to have him gargle with salt and baking soda.  Has anyone tried this and does it work?Again, thanks so much for the encouragement, it meant SO MUCH to me!!! Toodles for now,Brandi g8orgal79 Mon, 28 Apr 2008 00:00:00 GMT Brandi:I would suggest you do a separate posting requesting suggestions for the mouth sores.  Everyone is great a spitting back quick answers and they helped me tremendously.Having said that, I will tell you from experience that the medical community will often "poo-poo" what they don't know because they do not have empirical evidence.  I get that and sympathize with them.  However, we had them poo poo the glutamine and the probiotic tablets.  We did them anyway.  After doing my own research in contacting the chemo manufacturers, I decided their was no risk with these two natural remedies.  You should do the same.Salt water/baking soda rinses do help.  So does keeping the mouth moist with Biotene products (all of them), Oasis mouth spray, Numoisyn products and eating probiotic/acidophilus yogurts.  My husband did not get one mouth sore.  He did get thrush twice but we caught it very early.  Also, his thrush was probably due more to systemic candida infection (probably before treatment even began) and dry mouth.Best wishes,Kara Mediator Tue, 29 Apr 2008 00:00:00 GMT