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.

Monday, 21 February 2011

Blank Space

Had a wonderful visit to the Big C hospital I say with sarcasm in my voice. Don’t get me wrong the plastics consultant was lovely. We had a good old natter about my imposter, but I went in the room all positive. Only to leave feeling frustrated and fed up. My intention was that I should be able to walk in ask for a nipple and walk out, but my situation had to be more complicated than that. I must wait a further three months before they will attempt to put me on the waiting list for a nipple. Apparently my breast is still not level with my other breast and it still needs more time to settle. He offered me a silicone nipple for the time being whilst I wait, but I went on to explain. The nipple is not for me but my husband. To him I will not feel right until that final bit of surgery is done. I could see alarm on the consultants face at what I was saying. After all what my husband thinks and feels is not priority on his list? But I explained it is not just about me it is about my husband too. He has to look at me with no clothes on. A silicone nipple although amusing is a constant reminder. The consultant explained with the silicone nipple you can move it about. So it can match up with your current nipple. I understood what he was trying to tell me, but I want normality back. Not some nipple that can float around and drop off at will.
Part of me wishes I was not married and under no pressure to please. After all it is me who is going through all the prodding and poking. I know if I was not with Steve I would not both with a damn nipple.
When you start the BC journey you block out static noise. What I mean by static noise is the bad that can occur. This is for sanities sake even though I was pre focused on my opposite breast. Not once did I feel my imposter was going to be rejected and I still feel this way. But after my discussion with the plastic surgeon I now have to dissect the static noise and listen to it. He went into great detail about how even though the breast is fine now. The implant still maybe rejected in a years’ time which could mean redoing the permanent nipple. His reasoning I understood, but I am tired.
The nurse that was present was staring at me with a blank expression. Her eyes spoke a thousand words without her facial muscles moving. I so wanted to shout boo and get her to change her expression at least. No my chest is not perfect, but it beats a blank space. At least she could say something positive instead of staring.
At the end of my consultation I was not swayed into getting a silicone nipple. He said he wanted me to be happy after all that is what they are there for. The silicone nipple was a quick and easy solution, but I did not want it. Besides I know when I see Miss S my oncologist she would be asking why the job is not complete.

When my husband returned home from work I went into great detail what was discussed in the consultation. His reply was but Sarah what do you want? In my head I want my old life back, but out loud I said normality. But what is normality with BC?

Tuesday, 15 February 2011

No More Glitches Plzzzz

My appointment to have my stitches removed from under my breast went without a hitch literally. I hate it when a stitch gets snagged and it makes you yelp, but this time all was smooth.
Had an interesting and informative conversation with the nurse who had to do the task. She complimented me on being such an easy patient to deal with. She found I was totally relaxed about my breast reconstruction which is not always the case. Patients will look elsewhere in the room or try to shield their eyes from seeing it. My reply was direct. But what else can I do? Cry! My tears are long gone believe me. If I ever shed any at all it was through frustration out of not being in control. My breast may not be perfect or even mine, but I am here and talking. My situation could be a lot worse than the scares I show off. Besides I get to have a tattoo for free and without pain. I smile at the nurse and hold my hands up in the air as if challenging some hidden Mr meaner that caused me all this trouble. Like I said it is all about control you can feel sorry for you or beat it into submission. Don’t you find that you want to be in control as a nurse?
Her reply was also direct. I would not like to be sick no matter what. The thought of going through what many women that passes my door does scare me.
Again I’m drawn to the fact medical staff know and see everything. At times you can understand why they switch off and go through their day in an automated way. It gives them the strength to support rather than have an emotional outburst, but at times you question where all that emotion gets stored.
I dropped off at the Maggie centre to have my usual cup of coffee. Isn’t it strange how someone else’s coffee can taste better than yours? I do not drink coffee at home or tea, but if out and about I’ll have a social cuppa. It breaks the routine into whilst discussing utter rubbish to pass the hours away. I think that little conversation I had with the nurse has spurred me into a positive. As I walk from the Big C hospital grounds down towards Hammersmith I feel a smile emerging.

My life is on the up; my hubby bought me a bunch of flowers with a bowel of crab/sweet corn soup for Valentine’s Day. That is way more than I got last year and something tells me the tide is changing for the better I hope. They say to make a relationship work you must take the rough with the smooth. Our relationship has had a lot of rough with no smooth to speak of. Little things can make a heap of difference to get things back on track. Let us hope that from now on there are no more glitches to spoil things.

Wednesday, 9 February 2011

A Tiny Robin Can Kick Arse!

This month is a busy month for appointments. First I had a review of my eyes which showed no signs of diabetic retinopathy. Then I had my dressing checked on my breast at The Big C hospital. The nurse was pleased at the clinic and my stitches are to be removed on 14th. I also have my MOT of bloods to be taken on the 17th for diabetes. On the 21st I have my review for nipple reconstruction with Mr H at Big C hospital. So it is a case of buses and tubes with a lot of waiting in between.
The diabetes is an issue that sadly needs medication for it to be controlled now, but if I hear one more person say stay away from chocolate again I’ll thump them. It takes more than a piece of chocolate for diabetes to become an issue. Yes I do need to take control of my sugar levels in my blood stream, but I say the whole situation is more complex. Your blood when not achieving energy has a habit of burning fats from your body which in turn elevates your sugar levels. My nurse said it clearly shows you have good management of your sugars levels because you have remained border line for twenty years. So I stick a single finger in the air at those trying to stress me out about my eating habits lol. Yes I enjoy chocolate, but I eat it in moderation depending on what I have consumed that day. Not only that I tell the truth when I speak to my consultants rather than say I’m a perfect patient. Being on the ball with any medical condition rather than locking yourself away is the only way to be. Let’s face the truth diabetes and cancer is not the best position to be in, but it is being managed.

The Race for Life sponsorship is going well or at least it will be. After recent events that took place on my FB page I realise as usual that I am in control. Friends and acquaintance have offered their services in trying to raise the cash. I have an excellent idea which is now being used and could turn into a business if handled correctly. My life is slowly moving forward without a doubt and on a level I can manage. To be perfectly honest I have never felt this excited in months. So bring it on! I’m a tough bird after all just like Mr Robin.

Saturday, 5 February 2011

I've Found My Trigger.. Now What!....

My husband advice me to narrow the diabetes information down, but sometimes when you open doors it can reveal unwanted answers. The internet is a wonderful tool if handled with kid gloves. I went on a quest tapping onto various pages on the internet. Each page says the same thing for diabetes. Then one special page I open gives a link on type 2 diabetes and breast cancer. Not once did I believe there was a connection with the two life threatening conditions. Turns out there are strong connections with both diseases. This connection is being heavily researched and the data is still being analysed.
The plastic surgeon said I would be under close observation. I am high risk not just because of the biopsy result, but because of the diabetes. I did not realise what he was trying to tell me up until now. My biopsy results were more interesting than hearing the repeat about my diabetes that I had heard so often. When they mention diabetes I presume they mean infection not that it is a possible bloody trigger for breast cancer. I feel like a guinea pig in a cage everyone trying to see what next. My family wanted to know why I had breast cancer. Well maybe they should have asked why I have Diabetes. Maybe the answer is there. I feel angry because no-one told me about the connection or it was dismissed. You hear about going blind, losing a limb. The effects of diabetes are well noted, but cancer is a new monster added to the already long list of possible.

When speaking to my husband about my findings I am laughing. I said what next do I find that fairies do exist and I get one wish as a reward. He said it is no laughing matter and I should take it serious. I pull a face and say I am serious, but what am I to do? You told me to research more and brother I found the crock of gold. I turn away bemused at his response. What was I suppose to find a mystical cure for all my ills.   
The more you walk this path the more you realise how fragile you really are.
The breast cancer lottery plot thickens by the day. So my breast and pancreas fighting is not far from the truth. How bloody ironic that an innocent observation is actually the truth. I have been advised by friends and family to print the information off. On my next oncologist appointment present it with questions to be answered. 
If my diabetes is the trigger should I now go ahead and remove my other breast?
The statistics now say 1 – 8 women will be affected by breast cancer in their lifetime in the UK. Breast cancer is becoming an epidemic. If swine flu jumped to the levels of breast cancer there would be a national outcry.

Wednesday, 2 February 2011

Stress Management

I did as I was told and visited my Diabetes nurse today. Whether I like to admit it I have two issues not one. My pancreas is playing the devils tune again. One minute the sugar level is stable the next it is up. My twenty year battle with this disease has left me in some deep depressive spots. I would be constantly preoccupied with my weight, but with time I was able to adjust. Then of cause the dreaded cancer compacted on my already stressed out body.
I went into deep discussion about my operation and the stress factors. My argument was valid, but they need to control my levels before they get out of hand. It was explained to me that the data they have still leaves a gap on what type of diabetic I am. Although I say type two I do not fit into the category of type two. The normal profile of type two is thirty plus, overweight & abusive to one’s body. I was nineteen, very skinny, with attitude and lived a healthy productive life. I said my body suffers from hypochondria it doesn’t exist. Although there was laughter in that office my condition is serious. We agree on one thing my bloods need repeating on a starvation test. This way they can monitor my liver function and kidney as well. Tomorrow I have my retinal test done on my eyes. I hate this test because I have to hide away until the eye drops wear off. My pupils are dilated to full capacity so they can check the back of my eyes. I call all these tests my MOT which is done yearly. One of my friends said you are getting slapped from both ends. My reply is yeah but who else could take this shit and be humorous about it. A mix batch of appointments that make sure my rebellious body does not have the last say. I have two life threatening conditions if not monitored can kill me how nice is that? There is an image in my head of a pancreas and breast fighting in a ring.

‘No I’m taking the bitch!’
‘No I’m taking the bitch!’
‘I was here first!’
‘But you did a crap job now let the expert show you how it is done!’
‘Take that pancreas!’
‘No you take that breast!’
‘I tell you what let’s work together she’ll soon give in.’

I say all of this with a smile, but seriously if it isn’t the cancer the diabetes will sneak in. It is all about stress management.

Tuesday, 1 February 2011

The True Nature Of Cancer.

We try to believe our life experiences tames the lion in all of us, but sometimes when we least expect it. It will rear its head like a hidden monster whether it is an opinion or straight forward venting. There is no protection from its wrath. We still suffer the scars both emotional and physical, but the anger never abates. I now question what my BC nurse was trying to say. That I am not part of this journey that others are on. Not that I did not have cancer because I did, but my whole attitude and reasoning.
If we are not careful we become hard and cold. Someone who thinks they are creating a get well atmosphere. Will find anger if they tread the boards wrongly. The forums I watch can easily turn into a school yard full of bullies. Their opinion/ response maybe valid and just, but the way they vent this opinion/ response can leave someone in a weakened and vulnerable state. Especially when one voice becomes a group of voices each whispering. The true nature of cancer is the ugly hidden side we dare not admit to. Cancer has not changed the individual it can give the individual and excuse to rant. We hide behind words of ‘Your Stressed’ ‘Don’t be bitter’ & ‘It is your problem not mine’ too easily to explain our irritability. To actually validate our actions in open text for all to see, but I find this is who we are not the cancer. You do not have to be affected by cancer for these words to flow.

In some cases when it is harmless fund raising do we not have a choice in decision making? We can either decide to donate or not to donate. When someone says they are tired of people requesting cash because they don’t have cash to spare. That is a valid point and accepted. It is an endless conveyer belt of donations that is thrust upon us. My daughter is constantly bringing pieces of paper with various ways the school she attends needs to raise cash, but can’t we just say - No! Do we have to feel pressure or guilt for wanting to do something good? I was in a long discussion today about this very practice. How can we achieve a goal without the pressure?
Sometimes we hide from saying our true feelings the protective bubble we trust bursts. Then innocent outspoken comments can lead to tears and tantrums. The individual in question is left confused because they did not expect the flow of emotions people thrust at them.
I know several people who have now retreated from the forums due to this very event. Are forums a danger to our health? Is a forum the right place to raise cash? Only you my friends can answer these questions I put forth. My opinion is we live in a democracy of choice not the shadows we build.

We believe with age we learn, but gossip will never leave communities because we thrive on its destruction.
I have faults in my personality, but I will not entertain bitching. I am the type of person you have to actually physically hurt first to get a response from. Not everyone on this planet was put on it to love me and my quirky ways. So if I hear any negativity about me and what I am doing I move on. Either that or I wait quietly until that person realises I cannot be swayed into a negative corner so easily. No-one can influence my opinion or reflection on my constant questioning. I will always see a positive light in someone. But when do we as a community drop our complaining and unit in a common goal. To clear the word CANCER from our dictionaries.
Personally I am still doing the 'Race for life' not just as a fund raiser, but as a lesson for my youngest. She needs to learn that giving comes from the heart not from the pocket.