It is the word that we hear all the time, so closely connected to breast cancer that it is almost a mantra. Early detection saves lives; roll up, roll up, get your mammogram here; be Aware of The Symptoms.
But Awareness only seems to go along with the symptoms and catching it early. Where is the Awareness when it is no longer and Early Stage form that can have a happy outcome? How about some Awareness that even when cancer has become Late Stage that there is still a possibility of life and happiness even if you are considered to have incurable cancer.
My father died of emphysema less than three weeks after my 18th birthday. I grew up witnessing and living alongside a disease that could not be cured and which was killing my father, so I guess I have always thought that there could be come sort of a life after a diagnosis of death. What I find so difficult is the way that those of use living in the Valley Of The Shadow Of Death are not seen as being in a valley that can have sun as well as shadow; that can have beautiful and life affirming days even when we are traveling through it. The path from one end of the valley to the other is not straight and although the terrain can be difficult there can be those days when you just have to smile at being alive and able to enjoy living. I was driving out from Oxford to Witney earlier this week and I was just thinking what a perfect day it was and how amazing it was just to be there. It was the kind of day where I could just have kept heading west into the Cotswolds and wandered around the villages that my ancestors inhabited. But that world is also in my mind and my soul. I may not be able to walk through the countryside as once I could, but my mind can still walk through those fields and along those roads just as many of my family did before me.
There is nothing new under the sun ... perhaps, but there are new things for me to do, or places to go because today is a new day that I have not lived before.
Awareness of breast cancer has to be about understanding an excepting the whole journey. It is about being aware that things can go to plan and the patient can be a survivor, but in some cases it just doesn't work out the way that we would all like it to be. Awareness is about not only supporting the 'winners' but also the 'losers' and making sure that they get the support that they need. Why is it that all the support goes to those who, hopefully, will be ok? Why do we have to sit and listen to people going on about how stressful it is knowing that your cancer might come back, that there might be a recurrence or progression. Of course once you are in the Valley Of The Shadow you don't need help, understanding or support because ... well you're dead already - WRONG. Those of us who are Valley-dwellers don't want anyone else to be part of Our Club. We want to be exclusive, we want to be the last of the last but others keep turning up and joining in. I have lived with Metastatic Breast Cancer for 66 months. I didn't die the day I was diagnosed. I didn't cease to exist, to have feelings or to need support and understanding and yet I, and so many others who live with MBC feel as though we are invisible and unwanted, having become some sort of Zombie - the walking dead. I am alive, I can kick and I do exists - so get over it!
Showing posts with label Early State Breast Cancer. Show all posts
Showing posts with label Early State Breast Cancer. Show all posts
Friday, 19 July 2013
Wednesday, 26 June 2013
71% don't know Metastatic Breast Cancer is incurable!
Well, according to a public survey commissioned by Novartis Oncology in the UK although 81% were aware that Early Stage Breast Cancer could be treated so a patience is disease free. http://www.medicalnewstoday.com/releases/262209.php
In many ways this is the crux of the matter, especially as 20% of those questioned could not even know about, or could not define what Advance Breast Cancer is.
In the UK Metastatic Breast Cancer is usually referred to as Secondary Breast Cancer. I highly object to this term because the very use of the word secondary makes it sound as though it is not as important coming in behind the more important Primary Breast Cancer. They are first and we are second in so many ways. Probably all hospitals have Breast Care Nurses but they disappear from view once you go through the Stage IV barrier into the incurable zone.
Of course the nearly 12,000 people who die each year of Metastatic Breast Cancer have some uses. Our deaths are quoted to get donations to charities who concentrate all their effort on prevention and Early Stage Breast Cancer (Primary). Our deaths are an indication that we got it wrong and didn't have any early detection to find the cancer at a curable Early Stage, but they don't like to mention that this is not the case. They don't mention that 30% of those will Early Stage Breast Cancer will have a metastatic progression, and another 10% are diagnosed at Stage IV. Our deaths are seen as mainly being of older women because in the UK you get into the screening programme when you turn 50. In my case I had to phone them up and say too late, mate! I was diagnosed with MBC when I was 47 years old, and by 50 I was already, statistically at least, dead.
Our deaths are used to raise money to make sure that it never happens again ... then what do they spend that money on? Ninety Seven per cent, yes 97%, is spent of early detection and research into Early Stage BC and how to stop people getting breast cancer in the first place ... so if you already have MBC how does this help? Three per cent of the research budget is used for MBC research into the form of the cancer which kills. You don't die of Early Stage BC and if you are one of the lucky ones you will not have a recurrence and you won't develop MBC. If you do ... you become one of the invisible.
The Here & Now campaign which had its Pan-European launch in Brussels recently has commissioned a sound installation by two well known artists called I Am Not The Cancer. Evidently there will be a wider launch later in the year (presumably October) to raise awareness of Advanced Breast Cancer. But, I wonder, why don't major companies actually do something about finding a cure for the good of those who have cancer, and not for the good of their company profit margin. There are so many promising natural substances that could be developed which would really help without breaking down the body's immune system and ability to function in the way that cytotoxic chemotherapy can. But they are not patentable and therefore there is not the big profit margins to be made from a blockbuster drug under patent and all the me-too drugs that are produced after that to hold on to the patent.
I don't want my eventual death to be another statistic to be waved in front of people to get them to give money to something that wouldn't have benefitted me anyway. I have come across so many people who go on about all the money that goes to breast cancer by comparison to other cancers and in some ways they have a point. All that money to find a cure, and what has it achieved? Pink Ribbons, Races For Life, Wear Pink To Work days ... for a cure? Not from where I stand.
In many ways this is the crux of the matter, especially as 20% of those questioned could not even know about, or could not define what Advance Breast Cancer is.
In the UK Metastatic Breast Cancer is usually referred to as Secondary Breast Cancer. I highly object to this term because the very use of the word secondary makes it sound as though it is not as important coming in behind the more important Primary Breast Cancer. They are first and we are second in so many ways. Probably all hospitals have Breast Care Nurses but they disappear from view once you go through the Stage IV barrier into the incurable zone.
Of course the nearly 12,000 people who die each year of Metastatic Breast Cancer have some uses. Our deaths are quoted to get donations to charities who concentrate all their effort on prevention and Early Stage Breast Cancer (Primary). Our deaths are an indication that we got it wrong and didn't have any early detection to find the cancer at a curable Early Stage, but they don't like to mention that this is not the case. They don't mention that 30% of those will Early Stage Breast Cancer will have a metastatic progression, and another 10% are diagnosed at Stage IV. Our deaths are seen as mainly being of older women because in the UK you get into the screening programme when you turn 50. In my case I had to phone them up and say too late, mate! I was diagnosed with MBC when I was 47 years old, and by 50 I was already, statistically at least, dead.
Our deaths are used to raise money to make sure that it never happens again ... then what do they spend that money on? Ninety Seven per cent, yes 97%, is spent of early detection and research into Early Stage BC and how to stop people getting breast cancer in the first place ... so if you already have MBC how does this help? Three per cent of the research budget is used for MBC research into the form of the cancer which kills. You don't die of Early Stage BC and if you are one of the lucky ones you will not have a recurrence and you won't develop MBC. If you do ... you become one of the invisible.
The Here & Now campaign which had its Pan-European launch in Brussels recently has commissioned a sound installation by two well known artists called I Am Not The Cancer. Evidently there will be a wider launch later in the year (presumably October) to raise awareness of Advanced Breast Cancer. But, I wonder, why don't major companies actually do something about finding a cure for the good of those who have cancer, and not for the good of their company profit margin. There are so many promising natural substances that could be developed which would really help without breaking down the body's immune system and ability to function in the way that cytotoxic chemotherapy can. But they are not patentable and therefore there is not the big profit margins to be made from a blockbuster drug under patent and all the me-too drugs that are produced after that to hold on to the patent.
I don't want my eventual death to be another statistic to be waved in front of people to get them to give money to something that wouldn't have benefitted me anyway. I have come across so many people who go on about all the money that goes to breast cancer by comparison to other cancers and in some ways they have a point. All that money to find a cure, and what has it achieved? Pink Ribbons, Races For Life, Wear Pink To Work days ... for a cure? Not from where I stand.
Subscribe to:
Posts (Atom)