Re: Re: LLS Statement - Neal - go for it!

[Guest guest]

Hi All

I've only just caught up with this, and I must say I agree with you, Neal!

We all have our burdens and the side effects of Glivec (Gleevec) does drag

us down, some of us worse than others.

I too was diagnosed somewhat " late " , but still in chronic phase.

It's a well known fact that everyone likes to " hang shit " on everyone else

with their own whinges and complaints, but no-one wants to hear the other

side.

I am now 49, diagnosed almost five years ago, and I feel very fortunate how

Glivec has helped me, that I can still work, albeit from home, HOWEVER it

certainly HAS taken its toll on me, in many ways.

Neal, you have EVERY RIGHT to complain and whinge. Go for it, mate. You're

young, have a family, another one on the way, working to support your family

and dealing with a condition as well. That's one hard task, for anyone.

No, I can't say I'm happy with my situation, BUT I am as happy as I can be

that it's under control.

Go for it, mate, have a good whinge because that's also what this group is

for! I like a good whinge myself from time to time.

You have my support because I can only imagine what you work/home life must

be like.

Jackie

_____

From: [mailto: ] On Behalf Of Neal

Sent: Friday, 22 October 2010 10:09 AM

Subject: RE: [ ] Re: LLS Statement - Neal

Do I have the experience of being told I have 3-5 years to live? No I do

not. I did, however, have a brush with death because I was diagnosed late. I

do have to deal with side effects while trying to support my family, engage

with my kids and do all the other things I am expected to do. I have to deal

with having a body aged well ahead of its time. So on and so forth. You

really do not know what I have or haven't dealt with, so don't you dare

minimize it.

I thought half the reason for having a CML group was so we could " complain "

about all the crap we have to go through, without getting all the lame 'it

could be worse' and 'turn that frown upside down' comments we hear from

everyone else.

If you are happy about your situation, then good for you.

I guess I'll just go to the corner drug store and complain some more.

[ ] Re: LLS Statement - Neal

> On the rest, maybe we should bring this back in focus: My initial comments

> were about whether it is accurate to call CML " essentially cured " . It's

not

> about whether I think I'm going to die of CML, or that I have a constant

> negative attitude.

>

>

>

> I think that the current lines of drugs are not cures. I think they are

> keeping us alive at the cost of quality of life, and I think possibly our

> long term health. I don't think I'm going to have negative health

> consequences for believing that.

_________________________________________

Sorry, I seem to have offended you by offering my point of view, which

differs from yours. I don't put on a happy face to deal with CML.....this is

just who I genuinely am, and it works well for me! I have most likely dealt

with much more than you have CML-wise in 12 years and I still remain

optimistic and glad that I have CML and not a really 'fatal' or disabling

disease.

" Essentially cured " to me means that I am still alive, still functioning

well and not a lot to really complain about (yes, some annoying side effects

of CML and of meds). 10 years ago, this was a fatal disease and it is NOT

anymore for most CML patients....to me, that is 'essentially' cured. It does

not mean that you don't have to take medications for it.....it means that

you don't die from it.

AND like every other topic, there are 2 sides of the coin, and there are

many studies that show that attitude and stress level does affect

health......not that a positive attitude is going to make you survive a most

likely fatal situation, and I was not suggesting that, but that positive

attitude does affect general health and lovegevity.

No reason for us to share thoughts anymore, we obviously enjoy seeing the

world from a different perspective.

C.

[Guest guest]

Good Morning All

Just read the post about complaints,  there is a saying in the Army that a

complaining soldier is a better soldier.

So for all of us who have been around the block for a short or long while,  IN

My OPINION has a right to

complain,  I have seen a lot of CML'er and seen how quick things can change. 

Over the years a once full waiting room became just one (me)different types of

leukemia , so complain as much as you want, I will always listen (read) I have

never walked a mile in anyone else's shoes but my own. 

just my opinion.

SkipD dx'ed Dec 1977

 

________________________________

From: Jackie Petropoulos <jackie@...>

Sent: Thu, October 21, 2010 8:33:57 PM

Subject: RE: [ ] Re: LLS Statement - Neal - go for it!

 

Hi All

I've only just caught up with this, and I must say I agree with you, Neal!

We all have our burdens and the side effects of Glivec (Gleevec) does drag

us down, some of us worse than others.

I too was diagnosed somewhat " late " , but still in chronic phase.

It's a well known fact that everyone likes to " hang shit " on everyone else

with their own whinges and complaints, but no-one wants to hear the other

side.

I am now 49, diagnosed almost five years ago, and I feel very fortunate how

Glivec has helped me, that I can still work, albeit from home, HOWEVER it

certainly HAS taken its toll on me, in many ways.

Neal, you have EVERY RIGHT to complain and whinge. Go for it, mate. You're

young, have a family, another one on the way, working to support your family

and dealing with a condition as well. That's one hard task, for anyone.

No, I can't say I'm happy with my situation, BUT I am as happy as I can be

that it's under control.

Go for it, mate, have a good whinge because that's also what this group is

for! I like a good whinge myself from time to time.

You have my support because I can only imagine what you work/home life must

be like.

Jackie

_____

From: [mailto: ] On Behalf Of Neal

Sent: Friday, 22 October 2010 10:09 AM

Subject: RE: [ ] Re: LLS Statement - Neal

Do I have the experience of being told I have 3-5 years to live? No I do

not. I did, however, have a brush with death because I was diagnosed late. I

do have to deal with side effects while trying to support my family, engage

with my kids and do all the other things I am expected to do. I have to deal

with having a body aged well ahead of its time. So on and so forth. You

really do not know what I have or haven't dealt with, so don't you dare

minimize it.

I thought half the reason for having a CML group was so we could " complain "

about all the crap we have to go through, without getting all the lame 'it

could be worse' and 'turn that frown upside down' comments we hear from

everyone else.

If you are happy about your situation, then good for you.

I guess I'll just go to the corner drug store and complain some more.

[ ] Re: LLS Statement - Neal

> On the rest, maybe we should bring this back in focus: My initial comments

> were about whether it is accurate to call CML " essentially cured " . It's

not

> about whether I think I'm going to die of CML, or that I have a constant

> negative attitude.

>

>

>

> I think that the current lines of drugs are not cures. I think they are

> keeping us alive at the cost of quality of life, and I think possibly our

> long term health. I don't think I'm going to have negative health

> consequences for believing that.

_________________________________________

Sorry, I seem to have offended you by offering my point of view, which

differs from yours. I don't put on a happy face to deal with CML.....this is

just who I genuinely am, and it works well for me! I have most likely dealt

with much more than you have CML-wise in 12 years and I still remain

optimistic and glad that I have CML and not a really 'fatal' or disabling

disease.

" Essentially cured " to me means that I am still alive, still functioning

well and not a lot to really complain about (yes, some annoying side effects

of CML and of meds). 10 years ago, this was a fatal disease and it is NOT

anymore for most CML patients....to me, that is 'essentially' cured. It does

not mean that you don't have to take medications for it.....it means that

you don't die from it.

AND like every other topic, there are 2 sides of the coin, and there are

many studies that show that attitude and stress level does affect

health......not that a positive attitude is going to make you survive a most

likely fatal situation, and I was not suggesting that, but that positive

attitude does affect general health and lovegevity.

No reason for us to share thoughts anymore, we obviously enjoy seeing the

world from a different perspective.

C.