RE: putting blind faith in your doctor -Chris, Susie and anyone else who is interested

[Guest guest]

I will start off by saying Thank you Susie for your reply. I really wanted

you to understand that I was simply concurring with Tracey regarding the

Doctor situation and I " think " she like me was referring to your regular

Oncologist not all of our CML experts, which by the way I forgot to mention

I have one of those too. But feel more comfortable keeping my Oncologist as

my primary. My expert is pretty much there as a back up in the event I

needed to join a new trial. Not that I am wanting to, but by experience I

know that I have a better chance of getting into a trial if necessary if I

am an active patient in a large Center that participates in the trials.

You addressed your post to me only- at least it appears that way? Forgive me

if my perception is wrong but I saw only my name in the subject line.

Once again I am confused because you said " Please be more accepting to

difrent countries, people, cultures , ways, ilnesses,etc as not everyone in

the world is out there to attack, I looked at this as a help group but arent

finding it to be that way. "

I have to be very honest with you ... I think I may have jumped into

something bad that was going on behind the scenes? Because I can't for the

life of me figure out where I said anything about ones culture or medical

system, countries etc.

And, I really don't have any clue about how other countries run there

medical care systems and what I do know is from what all the wonderful

people from the other countries post.

Some of things I read about other countries and their healthcare system

makes me very sad... and others leave me with a feeling of envy.

Personally, I thank God that we actually have a support group which includes

people from many other countries... this is invaluable as we can learn so

much from each other. I am also certain that the experts from different

countries work together to find a cure which is why many of us are still

alive and doing well.

As for America and our health care, there are days I " REALLY " think it sucks

When I think of all senior citizens and their medicare benefits...

To think that many of them have to choose between food and medicine?

Especially now with the new system they have in place that's suppose to be

better but instead it's even worse for the poor or for the very limited

income many of them live on. And yes " that's my opinion " and No I am not

attacking America. I love America. I just don't agree with all the politics

but I refuse to go there. And no, I am neither a democrat or a republican.

But then on many days like when I am getting treatment or picking up my

medications, I am so grateful that I can. Its then I think of those less

fortunate in our country and others.

I pay 180.00 US dollars per week for medical insurance which is very high

because I work for a very small company that does not get the same lower

price for benefits as the larger corporations do, but again, I am grateful

that I am alive and well enough to work so that I can have coverage.

Somehow I think this thread became very twisted and again it has to be all

one's perception...because of that I would like to apologize to you for

whatever made you feel like this is not a group where one can post what they

want and enjoy their freedom of opinions. But I ask that you too consider

that I am now feeling that I am being accused of being closed minded and

prejudice against other cultures, countries etc.

This feeling has me thinking I should feel regret for ever saying such

wonderful things about this group and the wonderful people who provide so

much support. And many of these people are from countries outside the US.

Crediting the group and the wonderful support we have on here was and is my

only intention...

However, I will not let this situation or any other be one that deters me

from staying here. If I chose to leave the group over something like this, I

know it would be my loss and the fact is people should and will continue to

share their opinions, as I will.

Chris' I think it's wonderful that you are trying to get support for your

friend. As a cancer patient I think many of us feel that we can help others

in their fight no matter what the battle is. I want you to know that this

group saved my life and I hope you find the same here for yourself and your

friend.

Susie' I saw the posts where individuals did come across as if they were

bashing your health care system and I wasn't sure why because your post did

not intend to bash ours in any way. At least I didn't take it that way. I

kind of saw it as if you were curious about how our system works - nut not

condemning it. And even if it were your intention, I think it would be

pretty immature for one to respond in the attack back mode.

I have never and will never attack anyone on this group or in any other

group. As a matter fact in over 5 years this is the only time I have ever

been part of something like this but I still don't know how it all happened

to end up this way? Usually when I see one of these threads going on I stay

out of it because I think it's senseless. But I now wonder how they all got

started? And I sure hope that they didn't start like this because it would

be very sad to know that people left this group or any other group we were

part of due to misperception.

With all this being said I hope that we are all done with this so we can

move on to better things like supporting one another. And please anyone who

feels the need to e-mail me directly for any further clarifications

regarding my posts and intentions, feel free.

Were all in this together and we can learn from each other.

Message: 8

Date: Sat, 11 Feb 2006 19:30:00 +1100

From: " Willis " <blueshar@...>

Subject: Re: Re: putting blind faith in your doctor -

Date: Sat, 11 Feb 2006 15:52:51 +1100 (EST)

From: willis <cawillis9@...>

Subject: Re: [ ] Re: putting blind faith in your doctor -

no_reply

I joined this group a week or so ago thinking I might be able to help a

friend of mine with Cml2, get ideas of how i might help etc......

But to be honist I think there is a huge difrence in peoples opinions re

diffrent countries and everyone thinks there systems are the same re Health

care, .... there not and never will be if you think of it, We can actually

all learn from each other wether we live in antarctica, America, Australia

or where ever.....

I thought we were all on here to voice ones opinons, but I hate to say I am

not so sure of that, this is how I feel thru your emails!! have I got this

wrong .....I am sure some of you will let rip at me just take head first

tho, as I am actually suffering from cancer myself and have been thru hell,

but I wasnt prepared to stop at me if I could help my friend ....

Please be more accepting to difrent countries, people, cultures , ways,

ilnesses,etc as not everyone in the world is out there to attack, I looked

at this as a help group but arent finding it to be that way.

Chris

[ ] Re: putting blind faith in your doctor -

Hello and thankyou for your reply,

Im sorry if you felt that i was attacking you personally in my post.

In no way was that my intention but i do believe you need to go back

to the original post and read what was written,this is a quote from

one of the post (CML is very rare and Gleevec is a state of the art

drug that works very differently than any other drug on the market.

The majority of hematologists/oncologists have maybe one or two CML

patients in their practice, if even that many. Do you think they

spend hours and hours researching this disease, travelling to

conferences and consulting with experts when less than 1% of their

clientel is affected? )(My Doctor Tim specilizes in all this

and goes international for many confernces and im sure he isnt the

only one) All in all the point i just wish to make is, yes we all

have lots of things that we can post and lots of advice we can give

but lets be open and be prepared for a reply. When one does reply it

dosnt mean we are wrong it just means we might not know all the

facts. Even though Ive had no other comment other than zavie and

you, ive had lots of comments via .chat and they've all been

words of encouragement. I wasnt directing everyting at you or

tracey, I just used it as a example that we need to becareful what

we post and the type of message we are putting across. If you read

alot of the post there are many " words of encouragement " but also

lots of advice. And that is where i also mentioned we need to

becareful. Example, Ive put a post in before about health care in

australia verses health care in other countries, and the negative

post i got back, they didnt have all the facts. saying our country

takes Gleevec away from us if we reach a certian % philly (which is

not true, as my doctor Tim confirmed with me)

Thankyou for your story and im glad you went with your gut feeling

and didnt have a transplant...