cures are as bad as the disease

[Guest guest]

Dear Carolyn,

I personally feel like you, I am just a bit younger than yourself but have

lived a long full life so for me what your say in your post expresses my

feelings.

I have spent 3 years fighting the consultants and I think I have won the

battle and will do a moderate treatment. Unfortunately I have no choice but

have some sort of treatment as my Hb and platelets do not hold.

I am playing safe and will be doing low doses chlorambucil and Rituximab

starting sometime over the next 8 weeks unless a miracle happens and my

platelets and Hb hold, but that is unlikely, I know that for sure now.

Over the last 12 months I have had 10 weeks of low doses chlorambucil (2 mg.

per day) in combination with Prednisolone and it did work without side

effects, but I am not keen or ever was to have steroids on the long term, so

it has taken me over the last year to find somebody that will go along with

Chlorambucil and Rituximab, it has been a long battle which could have been

avoided if some consultants were more open minded about different

approaches.

I simply refused to have a hard toxic treatment, I have made myself

unpopular with some haematologists over the last 3 years, but in the end I

managed to have the strength to refuse time after time. Had I not found the

perfect doctor to take care of this treatment, I am not sure if I would have

had the strength to continue saying no, I also know that I would have not

been able to continue to refuse without the support and help of my GP. I

have a tremendous admiration for her, she is young and knows how to listen.

I have just read Terry Hamblin blog " what makes a good doctor " and felt

every consultant should read it.

http://mutated-unmuated.blogspot.com/

Regards

Chonette (UK)

dx 10-02

Message: 5

Date: Sat, 7 Jan 2006 04:43:46 -0800 (PST)

From: Carolyn Swift <swift_carolyn@...>

Subject: Re: Raising Platelets

As I read my friends' letters on the listserv, I find

myself thinking that the cures are as bad as the

disease. I am still watch and wait, but I am beginning

to think that when my time comes for a cure, I'll just

pass on the opportunitty. At 77, with only a few years

to live anyway, why spend them letting the medical

world make me as miserable as the disease does. What

is your opinion of this view? Carolyn, age 77, dx

9/04, w & w