ackk help pain in joints?

[Guest guest]

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

[Guest guest]

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

[Guest guest]

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

[Guest guest]

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

[Guest guest]

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

[Guest guest]

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!!!

[Guest guest]

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

[Guest guest]

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

[Guest guest]

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?

>

>

[Guest guest]

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?

>

>

[Guest guest]

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?

>

>

[Guest guest]

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

[Guest guest]

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?

>

>

[Guest guest]

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

[Guest guest]

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?

>

>

[Guest guest]

No problem that's why we are here

[Guest guest]

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.

[Guest guest]

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!!!

[Guest guest]

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!!!

[Guest guest]

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?

>

>

[Guest guest]

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.

[Guest guest]

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?

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[Guest guest]

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

[Guest guest]

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