Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 Hey all , as some of yall know hubby just started chemo today, 5flu Levocarin Oxaplatin Tonight (its 12am here ) he is experiencing pain in all of his joints, ankles, hips , shoulders, elbows, The pain is bad enough to were he cant sleep , anyone else ever had this ???Is it a side effect? (ive never seen it mention anywhere) but he has never had this before the pain in joints that is Any ideas?? Thanks Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 Thanks Jolene (a female Joe? lol) Will call docs in the morning and ask about it , I rubbed him down with Bengay and gave him a tylenol and he is finally sleeping hope it lasts for abit Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 Deb It is probably side effect. Go to my report. They are giving me some meds that counter act that side effect. Golly I feel better than ever. I will look it up for you. The med is Decadron (Dexamethasone) Uses: It is a cortacosteroid that reduces swelling and inflammation, and is used ina variety of disorders such as skin diseases (psoriasis, hives) {helping me with my eczema}, allergic conditions, breathing problems {I have COPD}, cancer, blood disorders, digestive problems, eye disorders and for arthritis/bursitis. {My knees and hips are pain free for a change.} Whether this will help your hubby or not I don't know but is worth asking. They have to have something to help. Course it might be a passing thing too. Course no one wants to be on steroids for very long at a time. I would just as soon NOT be taking them, but if I only take them the weeks I am doing chemo - just maybe the effects of taking will not be as harmful. Remembering to take my calcium...anyway. HOpe you will get other suggestions. My thoughts and prayers are with you and your hubby. Love JOlene ackk help pain in joints? Hey all , as some of yall know hubby just started chemo today, 5flu Levocarin Oxaplatin Tonight (its 12am here ) he is experiencing pain in all of his joints, ankles, hips , shoulders, elbows, The pain is bad enough to were he cant sleep , anyone else ever had this ???Is it a side effect? (ive never seen it mention anywhere) but he has never had this before the pain in joints that is Any ideas?? Thanks Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 Debbie... Sorry I wasn't awake at the time you posted. As you can tell from the time of this post, I'm an early bird. Wanted to let you know that Glenn has experienced these symptoms on occasion in the last 8 wks. since starting 5FU/Leu/Oxalipatin...he has oxycodone to help with pain, altho, he won't take it too often. I can't determine any specific times that Glenn has it. Sometimes right after infusion, but also other times during the 2 wk. span before next treatment. You could ask for something to keep on hand for hubby Joe. Hope you both were able to sleep after your loving care. Lots of hugs and prayers, Donelle Caregiver to Glenn Colon resection 6/03, open wound for 2 months, chemo for 8 months Mets to Liver found 4/04, inoperable " at the moment " Chemo infiltration to chest 8/04 with severe side effects including severe pain and muscle damage (permanent??), unable to eat, colon shut down, hospitalization w/morphine 8 days Fluid build-up and draining on a regular weekly basis Now on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions TRYING TO KICK BUTT with this darn disease!!! In a message dated 1/7/2005 12:10:56 AM Eastern Standard Time, debbied30@... writes: Hey all , as some of yall know hubby just started chemo today, 5flu Levocarin Oxaplatin Tonight (its 12am here ) he is experiencing pain in all of his joints, ankles, hips , shoulders, elbows, The pain is bad enough to were he cant sleep , anyone else ever had this ???Is it a side effect? (ive never seen it mention anywhere) but he has never had this before the pain in joints that is Any ideas?? Thanks Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 That is good.. Glad he is resting. Caregiving is a hard. You just have to do it and not think about it. I had to deal with my hubby back in 1998. He has non-Hodgkins Lymphoma and they discovered it much too late. Was an awful year for him and for us all. I lost him on May 31, 1999. Thankfully this colon cancer even in its worst stages is more treatable than my husbands was. My nightmare is that I will react to chemo the way my hubby did. I mentally refuse to do that, so I pray I continue to go through this with a functioning mind and body. I wish the same for you and your hubby. Golly there are alot of Joe's around. I had thought about confusing them a bit more but decided no I will go easy on them and stick with Jolene. Take care Jolene Re: ackk help pain in joints? Thanks Jolene (a female Joe? lol) Will call docs in the morning and ask about it , I rubbed him down with Bengay and gave him a tylenol and he is finally sleeping hope it lasts for abit Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 In a message dated 1/7/2005 1:33:16 AM Eastern Standard Time, jehret@... writes: My nightmare is that I will react to chemo the way my hubby did. I mentally refuse to do that, so I pray I continue to go through this with a functioning mind and body. I wish the same for you and your hubby. Jolene...I'm wondering how much mind over matter...positive thinking...refusal to " submit " to the disease, etc. plays a part?? I'm thinking, from what I'm experiencing with Glenn and what I'm reading in the posts....A WHOLE LOT!!! Praying Everyone STAY POSITIVE as best you can... Lots of hugs and prayers, Donelle Caregiver to Glenn Colon resection 6/03, open wound for 2 months, chemo for 8 months Mets to Liver found 4/04, inoperable " at the moment " Chemo infiltration to chest 8/04 with severe side effects including severe pain and muscle damage (permanent??), unable to eat, colon shut down, hospitalization w/morphine 8 days Fluid build-up and draining on a regular weekly basis Now on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions TRYING TO KICK BUTT with this darn disease!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 Is it aches like flu? Tylenol will do it for that and it is a reaction to the Oxilaplatin. If it is worse he can try his pain meds. It should pass tonight or tomorrow if hasn't already. At least in Phil and my experience. If it is really bad or continues past the weekend I'd call the Dr. Narice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 MA...is that your name?? Thanks for posting this...Of course, he says he doesn't get nauseated as long as he lays flat in bed. Sounds like a likely story to me . We have the same " story " going on here...so maybe it's for real with some patients, huh?? He would rather lie down and sleep totally non-functional, than take pain or nausea meds!!! Glenn also says the pain in the lower abdomen is more tolerable lying down. I still don't understand why he has pain in lower abdomen...tumor was removed June 03. Mets are to the liver. But, it still could be the pressure from the constant fluid build-up pressing on different organs, etc. as well as the liver not functioning properly. We've been told the extreme fatigue can also just be from the cancer itself, without even considering the chemo. Glenn has been extremely, constantly fatigued this go-round, even before chemo was started. Add the chemo, you've got double trouble. Thanks for sharing... that simple little statement may make my Glenn's life a little easier....LOL He does tend to be a lazy-type, tho....I couldn't bear to spend as much time lying prone as he does. Not exactly hyper, but have to be doing something productive (usually) most of the time...or I feel I'm wasting my life. Lots of hugs and prayers, Donelle Caregiver to Glenn Colon resection 6/03, open wound for 2 months, chemo for 8 months Mets to Liver found 4/04, inoperable " at the moment " Chemo infiltration to chest 8/04 with severe side effects including severe pain and muscle damage (permanent??), unable to eat, colon shut down, hospitalization w/morphine 8 days Fluid build-up and draining on a regular weekly basis Now on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions TRYING TO KICK BUTT with this darn disease!!! In a message dated 1/7/2005 12:10:39 PM Eastern Standard Time, m_womack@... writes: For my husband (4th), he has reconciled to the fact that he is not going to feel good on Thursday and Friday after treatments. He is nauseous and just very weak. At first we blamed the tiredness (wanting to sleep all day) on the nausea medicine for days 4 and 5. He tried compazine, anzemet, and Zofran. He hasn't had any of the extra (Pill) nausea meds this time and still slept all day yesterday. Or course, he says he doesn't get nauseated as long as he lays flat in bed. Sounds like a likely story to me . Last weekend, I even got a storm door put up, gutters cleaned out and put back together, garbage hauled off, and a bunch of extra good work out of him. His poor arms proved he had worked. He has low platlets (78) and had bruises all over them. He has always been prone to bruises also. He did cut his finger while putting up the storm door. I just got a paper towel and some electrical tape and taped it up pretty tightly and put him back to work. He still says he can live with what he has experienced so far. Pain on Monday night, sleepy, weak, and queasy on Thursday and Friday. MA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 My husband has just finished his 4th treatment, and he has the severe pain on Monday night after the Oxaliplatin. He has some left over pain pills (Hydroco???) and he takes that. He does not take pain pills often, so it must be pretty bad. In fact, he took none of the pain pills with his colon surgery and port-a-cath installation. At our insistance he did use the pain pump right after surgery for about 36 hours and then had them take it. He told the Dr. this week about taking the pills and he said fine. In fact, as we were checking out after the treatment, he came and asked him if he needed a prescription for them. It only lasts that night. He does have weakness and nauseau on the Thursday and Friday following his treatment. MA > > From: debbied30@... > Date: 2005/01/07 Fri AM 12:10:02 EST > To: colon_cancer_support > Subject: ackk help pain in joints? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 Also, my husband does not sleep real good on treatment nights because of the pre-med (decadron) steroid. He gets the steroid on Monday and Tuesday, and it makes him really, really hungry as well as " wired " up. Also, for the treatment days (Monday, Tuesday, Wednesday), he does not have any nausea. I think his pre-med nauseau (Aloxi) works really well for those 3 days. He gets that on Monday morning only. > > From: debbied30@... > Date: 2005/01/07 Fri AM 12:10:02 EST > To: colon_cancer_support > Subject: ackk help pain in joints? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 Well no wonder I feel so good while I am on decadron. I am taking it by pill Wed, Thur, Friday. It is such a relief to feel so good, no aches and pains. I have repeated that often enough. Yes I can eat -- thank goodness. No nausea so far. I get something in a bag, and then pills to take again Wed, Thur, Friday. And them a companzine equivalent to take as needed. So Far haven't needed them but we will see after I go off the Kytril. (That works to alleviate nausea and certain mental and mood conditions)... Got to get busy before everything wears off. LOL Take Care Jolene Hope hubby feels better soon. JOlene ackk help pain in joints? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 I read your letter as frustration. That question of when to push and when to back off. your second letter seems to answer the question for you. It is very hard to see our loved ones who were once very active come home only to nap. Phil does it all the time. The kids (mine are 18 and 13) get really upset with me when I voice my frustration over this. Still hey I'm a 45 year old woman and ok I understand but i'd be lying if i told you it doesn't get to me when he's here but asleep a lot. It is really hard to look at my healthy looking guy and remember that his behavior is not a rejection of me but a result of this damned disease. One thing I remember is last August going for my own colonoscopy and being asked if I could be pregnant, and responding " I doubt it " to which of course the nurse ask you: " Are you sure? " I had to swallow hard before I said " VERY " Since this is a family board I won't go into detail but I think you get the gist. Let's not pretend that this disease does not effect our marriages both positively and negatively. It takes a lot of love and a lot of work to not take things personally but you learn day by day. So if we joke or get sarcastic about the cancer patient in our lives it is just our way of trying to cope with yet one more aspect of this disease. Be gentle with him and yourself. And let' s be careful to be gentle with one another. Narice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 For my husband (4th), he has reconciled to the fact that he is not going to feel good on Thursday and Friday after treatments. He is nauseous and just very weak. At first we blamed the tiredness (wanting to sleep all day) on the nausea medicine for days 4 and 5. He tried compazine, anzemet, and Zofran. He hasn't had any of the extra (Pill) nausea meds this time and still slept all day yesterday. Or course, he says he doesn't get nauseated as long as he lays flat in bed. Sounds like a likely story to me . Last weekend, I even got a storm door put up, gutters cleaned out and put back together, garbage hauled off, and a bunch of extra good work out of him. His poor arms proved he had worked. He has low platlets (78) and had bruises all over them. He has always been prone to bruises also. He did cut his finger while putting up the storm door. I just got a paper towel and some electrical tape and taped it up pretty tightly and put him back to work. He still says he can live with what he has experienced so far. Pain on Monday night, sleepy, weak, and queasy on Thursday and Friday. MA > > > Date: 2005/01/07 Fri AM 10:28:39 EST > To: <colon_cancer_support > > Subject: Re: ackk help pain in joints? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 lol , I love the remote comment MA. lol , that made this rough day of hubbys a little better thanks hun I told him that part but not about the part about breakfast/lunch/dinner in bed lol, Dont want him getting any ideas Actually if he WOULD eat , I would feed him in bed poor guy Thanks for the smiles Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 I hope I am not causing a problem here or reading this the way it sounds but it sounds like you are mad at him for not being able to feel better..I have been dealing with colon cancer 5 years now and everyday is different..there have been times I have been able to work (hairdresser) and within hours sick as a dog...not out of meaness but sick..I am thankful I have a husband that does not expect me to do anything at any given time...or do I him... and yes laying flat sometimes does make you feel better as does eating crackers,...sometimes nausea pills will help your stomach but also give you other bad feelings and I do not like the feeling of being a zombie either..electrical tape on a cut could be dangerous...infection...sometimes we do not know what others are going thru unless we have the same thing..hopefully that will not happen to everyone...sorry if you take this wrong..but pushing him will not make things better.....hugs,kaye Re: ackk help pain in joints? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 No problem that's why we are here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 Hi Kaye.. I don't think Ann or I meant to come off sounding like we were " mad " . The only anger I personally show would be towards the BEASTLY disease itself. Let me back up a little here and explain a little more...When Glenn went thru the first 8 mos. chemo, Glenn worked most days...was usually off the 2nd day after chemo, b/c that's when he felt the worst. When Glenn suffered the chemo infiltration in Aug. 04, he was in excruciating pain in the shoulder/chest/rib area for almost 2 months. He worked most days at least part days. The chemo infiltration caused the whole upper body to swell up like a balloon; it was full of chemo. The area was all red and hot to the touch for about a month. The poison caused that whole area on the right side of his chest/ribs, inside to become hard as a rock; to touch it, it felt like an embalmed person. It then eventually became all black and blue and green and yellow...different colors in different areas. Then Oct. 5th, he had sudden excruciating pain in the lower abdomen after a couple days of severe pain, nausea, weakness and fatigue. He was home and had to call the ambulance to come take him to the hosp. He was on morphine for 7 days at the hosp. and basically came home with no diagnosis, after many tests, scans, etc. Whole month of Oct. was a barage of dr. visits, more testing, scans, colonoscopy, etc. with Glenn still very, very ill. Not eating, sleeping 20 out of 24 hours a day, not drinking fluids and would become dehydrated, extremely high blood sugar daily...He was so sick, I really felt like I was literally watching him die. Finally, Nov. 9th he was still in the same weakened condition, but the dr. had eliminated all life threatening possibilities and decided to proceed with the chemo treatments. The 5 wks. he was so very ill, he became very weakened and lost 40 more pounds. Now on top of all that, he has to deal with the chemo treatments and their effects. But, he is now eating a little most days, he is able to stay awake (altho, prone in his lazy boy chair) and function somewhat. He is still not back to work. I have no doubt my Glenn feels badly on some days...no doubt whatsoever. He is so weakened that to shower and dress, he has to literally rest before he can drive a mile and back to the post office or bank. But, yes, I am trying to push him a little...b/c how will he ever get his muscle mass back...he's lost all muscle. We see his bones, which haven't been seen since gosh knows when...to see my big 6'4 " man in this condition just breaks my heart. And, yet, it seems he doesn't even try to help himself. He will not drink water to flush the chemo through his body, he will not eat much of anything that's really nutrious for him or cancer fighting veggies, he will not do even the most menial task during the day like take a short walk or ride the exercise bike a couple minutes or some days he doesn't even shower and never gets dressed. I guess I'm scared more than anything, but I'm still going to push a little to get him moving. I fix him egg sandwiches to get some protein in him. He is definitely eating more food than he was, so I'm grateful for that. B/C of the oxaliplatin, he can't drink cold milkshakes, which I could beat up an egg or two in that. Anyway...long story trying to shorten...I didn't mean to sound like I was mad at him b/c he feels bad. If he won't ride to Sears with me to look at tools, then I know he's not going anywhere....and I'll try the next day or two. I have forwarded several messages from this board and another I'm on, which has made him realize he's not alone. I'm, nevertheless, very grateful myself for this group, b/c I'm learning daily. I just had never heard anyone express those similar feelings I was having...is he really sick or is he just being lethargic and possibly depressed....and I believe it's a little of all three. We have a dr. appt. Monday with a scan to see if the 5FU/Leuk/Oxal/Avastin (just added Avastin last treatment) is doing any good. They will see if the lesions in the liver have grown or have gotten smaller or some small ones disappeared. As the wkn goes along, I'm sure I'll get more nervous/anxious/scared of the result of that upcoming scan, but I won't say anything to Glenn. I try to be as upbeat as I can, try to do as much for him as I can and try to be as nurturing to him as I can. Please don't be upset with me, I truly do empathize with anybody going through the chemo and suffering with Cancer, as well as any caregiver who has a loved one suffering, thus he/she suffers in their own ways. Sorry this is so long!! Lots of hugs and prayers, Donelle Caregiver to Glenn Colon resection 6/03, open wound for 2 months, chemo for 8 months Mets to Liver found 4/04, inoperable " at the moment " Chemo infiltration to chest 8/04 with severe side effects including severe pain and muscle damage (permanent??), unable to eat, colon shut down, hospitalization w/morphine 8 days Fluid build-up and draining on a regular weekly basis Now on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions TRYING TO KICK BUTT with this darn disease!!! In a message dated 1/7/2005 2:16:03 PM Eastern Standard Time, kayeskuts@... writes: I hope I am not causing a problem here or reading this the way it sounds but it sounds like you are mad at him for not being able to feel better..I have been dealing with colon cancer 5 years now and everyday is different..there have been times I have been able to work (hairdresser) and within hours sick as a dog...not out of meaness but sick..I am thankful I have a husband that does not expect me to do anything at any given time...or do I him... and yes laying flat sometimes does make you feel better as does eating crackers,...sometimes nausea pills will help your stomach but also give you other bad feelings and I do not like the feeling of being a zombie either..electrical tape on a cut could be dangerous...infection...sometimes we do not know what others are going thru unless we have the same thing..hopefully that will not happen to everyone...sorry if you take this wrong..but pushing him will not make things better.....hugs,kaye Re: Re: ackk help pain in joints? For my husband (4th), he has reconciled to the fact that he is not going to feel good on Thursday and Friday after treatments. He is nauseous and just very weak. At first we blamed the tiredness (wanting to sleep all day) on the nausea medicine for days 4 and 5. He tried compazine, anzemet, and Zofran. He hasn't had any of the extra (Pill) nausea meds this time and still slept all day yesterday. Or course, he says he doesn't get nauseated as long as he lays flat in bed. Sounds like a likely story to me . Last weekend, I even got a storm door put up, gutters cleaned out and put back together, garbage hauled off, and a bunch of extra good work out of him. His poor arms proved he had worked. He has low platlets (78) and had bruises all over them. He has always been prone to bruises also. He did cut his finger while putting up the storm door. I just got a paper towel and some electrical tape and taped it up pretty tightly and put him back to work. He still says he can live with what he has experienced so far. Pain on Monday night, sleepy, weak, and queasy on Thursday and Friday. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 In a message dated 1/7/2005 3:22:04 PM Eastern Standard Time, m_womack@... writes: Only problem was, the cut was on his remote finger, and he struggle with that a day or two. We discussed needing me to stay around and operate the remote for him. But since I am a woman, I am not " remote literate " so it wouldn't work. MA Now that's just too, too funny!!! Lots of hugs and prayers, Donelle Caregiver to Glenn Colon resection 6/03, open wound for 2 months, chemo for 8 months Mets to Liver found 4/04, inoperable " at the moment " Chemo infiltration to chest 8/04 with severe side effects including severe pain and muscle damage (permanent??), unable to eat, colon shut down, hospitalization w/morphine 8 days Fluid build-up and draining on a regular weekly basis Now on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions TRYING TO KICK BUTT with this darn disease!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 In a message dated 1/7/2005 3:23:29 PM Eastern Standard Time, m_womack@... writes: I do constantly remind him, that I read he should rest but that too much rest will drain your energy. I do really believe that. I am like you, I am not really hyper, but when I stop or sit down my brain won't stop telling me that something needs done. Takes away your muscle mass, as well. Lots of hugs and prayers, Donelle Caregiver to Glenn Colon resection 6/03, open wound for 2 months, chemo for 8 months Mets to Liver found 4/04, inoperable " at the moment " Chemo infiltration to chest 8/04 with severe side effects including severe pain and muscle damage (permanent??), unable to eat, colon shut down, hospitalization w/morphine 8 days Fluid build-up and draining on a regular weekly basis 11/09/04 on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions TRYING TO KICK BUTT with this darn disease!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 Initials - Ann (But come to think of it I am a MA through and through) I have one sure fire way of knowing if my husband is really sick - He doesn't go to work. He will not miss work for anything. I also have a sure fire way of knowing how bad his pain is - He takes a pain pill. Before surgery, everybody (pre-op nurse, surgeon, anethesia, etc) offered him a post-op epidural. He told all of them, he wouldn't need it just to give him tylenol. They all kinda just dropped their jaw and then snickered. It is really hard as a caregiver to know if they are really feeling that bad or being lazy. I am glad I have my two sure fire clues above. That helps a little. As a very healthy mother, who has not been able to stop even when sick I really struggle with something so severe that you can't push on. Through these groups, I am starting to understand that if he can't go, he can't go. That doesn't mean I don't get a twinge of feeling sorry for myself sometimes. I do constantly remind him, that I read he should rest but that too much rest will drain your energy. I do really believe that. I am like you, I am not really hyper, but when I stop or sit down my brain won't stop telling me that something needs done. Good luck, hugs and prayers - I see you have been in this fight for some time. MA > From: Grandmommyandme@... > Date: 2005/01/07 Fri PM 12:42:31 EST > To: colon_cancer_support > Subject: Re: ackk help pain in joints? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 Narice... you hit so many nails on the head!!! Thanks for putting it in to words for me. Makes me feel like I'm coping a bit better than I thought I was. Lots of hugs and prayers, Donelle Caregiver to Glenn In a message dated 1/7/2005 5:04:32 PM Eastern Standard Time, flipper759@... writes: It is really hard to look at my healthy looking guy and remember that his behavior is not a rejection of me but a result of this damned disease. Let's not pretend that this disease does not effect our marriages both positively and negatively. It takes a lot of love and a lot of work to not take things personally but you learn day by day. So if we joke or get sarcastic about the cancer patient in our lives it is just our way of trying to cope with yet one more aspect of this disease. Be gentle with him and yourself. And let' s be careful to be gentle with one another. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 I went back a re-read my post, and I don't really see where I came across as mad at him. Sure I will say loudly and clearly that I don't understand it. I will admit that sometimes I WANT to push him. But in the end, I don't and he is pretty pampered as are my grown boys. Nothing new there. I want to go on and say that since we jumped on this rollercoaster, I will admit to having had thoughts and feelings that range the full spectrum (anger, sorrow, loneliness, etc.). He knows nothing of them though, I have yet to shed a tear or shown any negative emotion to him. He needs to worry about himself right now. Rest assured that my husband has a wife that does not expect or demand him to do anything he doesn't feel like doing. I will take it a step further - he has a wife that doesn't even expect nor demand him to do anything he doesn't WANT to do. In fact, I would say that in this short journey you wouldn't find a patient that has it any better than my husband. Breakfast in bed every morning, lunch fixed and carried to him, supper plate fixed and carried to him. I wash his hair for him on pump days when he cannot shower. On his " sick " or " bed " days I go back to the bedroom every 20 minutes or so when I am there to ask him if he needs anything. As far as the electrical tape, that was some information that was given me by an individual that trains EMT's at the local college. It worked, it stopped the bleeding that didn't stop by just holding the paper towel on it. Only problem was, the cut was on his remote finger, and he struggle with that a day or two. We discussed needing me to stay around and operate the remote for him. But since I am a woman, I am not " remote literate " so it wouldn't work. MA > > Date: 2005/01/07 Fri PM 01:55:10 EST > To: <colon_cancer_support > > Subject: Re: Re: ackk help pain in joints? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 I am glad I could brighten you'lls (don't really know how to spell that but it is a word in the south) day. But I am serious about being remote illiterate. One time, I had to call DishNet with receiver problems and the tech told me to do this and do that. I didn't know which buttons to push and he was trying to tell me. Finally, I asked him to hold on so I could go get my son to work the remote control. I talked to the tech, and told my son what he said to do. We got it working. Yeah, don't start the serving thing yet . The crazy thing is I wait on my sons about like that. No wonder they are 23 and 22 still living at home with no prospects. I know you would gladly feed your husband in bed. Eating is not a problem (so far). Last week he had gained 7 pounds (in one week). He won't gain this week. In fact, he just called me - he calls me from his cell phone if he needs me - to get him a Zofran. He says he ate too much supper and he didn't think it was going to stay down. Lots of good wishes, MA Re: ackk help pain in joints? lol , I love the remote comment MA. lol , that made this rough day of hubbys a little better thanks hun I told him that part but not about the part about breakfast/lunch/dinner in bed lol, Dont want him getting any ideas Actually if he WOULD eat , I would feed him in bed poor guy Thanks for the smiles Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 I appreciate your kind words. I know what you mean about the Very sure thing. We've managed some (were fairly new to this) so I don't have a lot of room to complain, but even thinking a complaint makes me feel awfully guilty. I'm 49 by the way. I really like your reminder not to take things personally - I really struggle with that sometimes. Thanks again for your kindness as it brightened my day. MA Re: ackk help pain in joints? I read your letter as frustration. That question of when to push and when to back off. your second letter seems to answer the question for you. It is very hard to see our loved ones who were once very active come home only to nap. Phil does it all the time. The kids (mine are 18 and 13) get really upset with me when I voice my frustration over this. Still hey I'm a 45 year old woman and ok I understand but i'd be lying if i told you it doesn't get to me when he's here but asleep a lot. It is really hard to look at my healthy looking guy and remember that his behavior is not a rejection of me but a result of this damned disease. One thing I remember is last August going for my own colonoscopy and being asked if I could be pregnant, and responding " I doubt it " to which of course the nurse ask you: " Are you sure? " I had to swallow hard before I said " VERY " Since this is a family board I won't go into detail but I think you get the gist. Let's not pretend that this disease does not effect our marriages both positively and negatively. It takes a lot of love and a lot of work to not take things personally but you learn day by day. So if we joke or get sarcastic about the cancer patient in our lives it is just our way of trying to cope with yet one more aspect of this disease. Be gentle with him and yourself. And let' s be careful to be gentle with one another. Narice Quote Link to comment Share on other sites More sharing options...
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