Monday, 28 February 2011

Lets Not Mask The Facts.

I’ve been thinking whilst analyzing a couple of BC blogs. This is a bad thing because I go into overdrive and sometimes ask myself too many questions.

Are we being driven into a false sense of security?

The BC statistics are a rounded off figure not a true representation of the facts in my opinion. Personally when tallying the figures I would like to know about metastasis/secondary’s and time frames. (Especially after reading this one particular blog recently.) Her arguments are valid and portray the truth about BC and finding a cure. Other BC sufferers would sooner not know because they want to move forward this I respect, but I want to nitpick the true facts of BC not a written placebo.
If you confront an oncologist with the information that is there for all to read on the internet or newspaper, you are told not to worry because it does not affect you and your treatment. But what are the true figures to this dark cloud that hangs over our heads? If I mention to any medical professional that another person has a reoccurrence of this disease. Their reply is but they can go on for years with treatment. These words they are quick to regurgitate like a record that is stuck. There is an instant explanation waiting to be triggered by even questioning the treatment for BC.

Should I feel safe?

Clearly that is the wrong attitude to have because no-one is safe from reoccurrences no matter what stage the BC. It is a game of chance that you do not fall in that percentage that is dished out and quickly forgotten. The mentality that the medical establishment have on treatment to keep the masses calm about the facts is blasé with a smile and a percentage.
My plastic surgeon meeting clearly indicated all is not so straight forward with any treatment for BC and reconstruction. The hesitation and excuses for me not having my nipple done indicates they are airing on the side of caution with my treatment.
Yet my oncologist is in a rush to shift me along the conveyer belt that is ready for me to climb on board.
Consultants in their eagerness to treat don’t want you to question even though it is encouraged, but they do want a nodding dog that is easy to treat. I have clear examples of this with typed correspondents from my past medical records when questioning my treatment on diabetes and my first pregnancy. Mistakes can be made, but who takes responsibility? Normally you would not read their inner thoughts on your medical notes, but they were frustrated with my intense questioning.

19 November 1996

Letter to Dr H

Many thanks for your fresh note about Sarah Byrne the young woman with whom myself and Andrea had a long session, which was predominantly a counselling session today. She is clearly angry about her various health problems and it was necessary to let her anger subside before we could proceed to any discussion of her problem with impaired glucose tolerance, its significance and how to proceed with it. She has had a lot of advice from friends and relatives, quite apart from professional advice and is a very confused young lady. It is important to clarify her impaired glucose tolerance has not progressed to frank diabetes, so I am arranging a glucose tolerance test.

She wants to know more about her prospects for a future pregnancy, but bearing in mind her problems during her previous pregnancy several years ago, she also had several questions with regard to her cervical problem for which I understand she is due to have a colposcopy performed by Mr H on the 10 December. It was inappropriate for me to attempt to answer these questions, but I am sending a copy of this letter to Mr H who would be in a better position to deal with questions in this area.

I think her weight loss is caused by her excessive calorie restrictions earlier this year. She has now gone the other way and eats lots of cream cakes etc. I think it will be important to get her further dietary advice and we will take this up on a further visit as she didn’t want to take up the offer of dietetic advice today. Unless she has progressed to frank diabetes she needs to be discouraged from testing her urine.
I will review her after the glucose tolerance test.

Mr W

I was freshly diagnosed as a diabetic and going through the very early stages of cervical cell changes which would of lead to cervical cancer if left.
They had taken me into a room and expected me to except something that should have been explained to me after having my eldest daughter in 1990. Not only that, but I was going to be angry because my family at the time thought I might be anorexic.
I had gone into over drive where my diet was concerned and changed it around. This in turn caused my weight to drop very quickly. I had not taken into account that when changing your diet your metabolism has to stabilise itself. Questioning their way of thinking rather than obey the rule of the nodding dog was upsetting my consultant. 
My list of why’s and what for’s was to find out the truth about treatment I received. But the consultant did not have the time or patients to help me understand why errors were made during my pregnancy. I understood he was not present at the time and it was in a different hospital, but I had a right to vent my frustration at being informed six years later of certain events that took place.
The very questions/answers I put forth to the consultant about diabetes are now written and accepted in medical journals worldwide. The consultant at the time dismissed me and said there was no evidence of what I was trying to say. The question was simple is there a connection between diabetes and pre eclampsia? He said no, but I argued there was after researching diabetes. This irritated the consultant at the time and he found me to be not so easily pleased with his replies.
My family never knew of my situation until much later and the cream cakes were words said in defiance and anger against a person who did not want to listen. If I remember rightly my reply was I might as well go to a cream cake shop and stuff my face by the way I have been treated. His reply was but that will not solve your problem will it Miss Byrne.
I sensibly took a friend along with me who is well educated and knew what to ask, but even she to this day cannot understand how a hospital could make so many errors and still hold its head in defiance. It was clear that the hospital was in the wrong and someone should apologise, but that was not going to happen.
This very consultation left me feeling let down at my treatment past and present. The thought of returning to the hospital for further appointments was a no go and I sensibly dealt with my diabetes on my own without medical intervention for many years. This meant I was less stressed and not calorie counting as he put it.
When I received a copy of these notes March 2010 I was not surprised by the correspondence between my GP and hospital, but if you ask questions does that mean you are an erratic patient? 

At the beginning of the BC journey you have a calendar hung up and you jot down every appointment you receive. But after a period of time you stop writing the appointments down in the hope it will be your last, but the folder you start to keep with the appointment letters in gets heavier and becomes distorted with the weight of questions you long to be answered, but are too scared to ask just in case the above reaction happens.
My husband and friends say as long as I remain positive cancer will not return, I should keep repeating that to myself. This is easily said than done when every ache makes you ask yourself do I go and get checked. I have read so many stories of BC survivors ignoring these aches and finding out much later that their niggling doubt was right.
I can clearly understand the anger and frustration that some women begin to feel towards BC. The truth is far from pink it is more black/grey with lots of tears.

So this now leads me to the pink BC brigade that we all see. So who sat in a room and attached pink to breast cancer? Was she a flower power maiden who burnt her bra in defiance by any chance? I think not! The truth be known? She was probably a housewife who wanted the closet attitude of BC to be removed and raise some much needed cash for research. She did not know that it would become such a money making racket, but most probably hoped it would to solve the lack of funds in areas across the board. 
I never wore pink as a child or adult until now. It was the colour I associated with dumb blondes and fake tans even though it suited me, but I avoided it like the plague. So why have I had a change of heart about wearing baby pink? The truth is I actually don’t know. You think by joining the masses you are achieving something, but the brand does not sit well with all. The pink ribbon has been traded in as the pity those with breast cancer symbol, but that is not the true colour of BC. The real value of pink is in multi billion pound research industry that has latched on. As long as pink is attached to BC the money will keep rolling in to satisfy its needs. As for the little housewife that created the pink brigade she has long gone just another statistic left in the BC void.
There are women out there fighting for the facts and not hiding behind the over exploited colour pink. In the same way I tried to fight for the answers back in 1996 and were dismissed as neurotic.
They are tired of; oh everything is fine routine and would like the real facts about BC. Their anger to a colour that was clearly attached to distinguish male from female has no place in the BC realm of facts and figures. It is society’s way of burying the true tears and torment of this hated disease.
I am not satisfied with the reply well they can go on for years with treatment.
I would like to feel that those BC suffers who are fighting this disease head on are receiving the treatment not the placebo answer to keep them going. Until we truly understand and know the full facts not scribbled down estimates about BC. The pink will be used as a money making event to mask the facts. This makes me feel uncomfortable and very let down. The system is both secretive on targets and quick to hide behind fiction rather than dishing out the facts. Why is breast cancer on the rise really? Is it being triggered by something more than we are led to believe? I know I am high risk for this disease and I know what my trigger is, but until a cure is found I am clearly in the dark like many other BC survivors.

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