Just posted this on my other blog ...
http://inspiringmetastaticbreastcanceradvocacy.wordpress.com/2013/06/30/acceptance-is-the-new-pink/
Sunday, 30 June 2013
Saturday, 29 June 2013
Shouldn't we all join together to advocate for MBC?
But what, I hear you say, does MBC actually stand for. For me it is Metastatic Breast Cancer but recently I have seen this acronym used to mean Male Breast Cancer. I did a bit more thinking ... turned the heat down before I boiled over ... and began to come to the conclusion that we should be advocating together. We are the breast cancer groups that the mainly Pink charities choose to ignore. But why?
In the case of Metastatic Breast Cancer (MBC1) it is because we are an inconvenient Truth that doesn't fit marketing strategies. As for Male Breast Cancer (MBC2) it is because breast cancer as a whole has become equated with Pink ... Feminine ... Boobs. STOP! Rewind! Men have breasts as well don't they, just like we both have skin, livers, stomachs, bones, bowels ... you get the drift. The statistical fact that men make up a much smaller part of the numbers of people with BC doesn't mean that they don't exist. It doesn't mean that they aren't an equally important part of the equation.
When the talk is about Survivors and Life After Breast Cancer, men fall into both categories. Unfortunately because so many men down realise that they too can have breast cancer, they fall into the categories of Metastatic and Treatment Until Death far to often. The first two categories are justifiably celebrated. There is not a single person with MNC1 who wants even one more member of our 'Gang'. For all the right reasons we don't want them to know what incurable cancer feels like; we want them to be able to move on and savour Life After Breast Cancer. However, those in the first two categories should not shun those in the Incurable and Treatment Until Death sections. They must learn to accept us and our journey, just as we celebrate theirs.
Breast Cancer is an equal opportunity disease. It doesn't care about your gender, age, race, ethnicity, background, education, sexual orientation or religion, or any of those other 'labels' that humans can be filed under. It will take anyone who gets in its way, but if you are lucky to have successful treatment in the early stages you have a good chance of being able to leave it by the wayside as you move on.
But those labels - boy, can they stick; and not just with the general public, but also with the medical profession who seem to want to pigeon-hole breast cancer as a disease of those over 50, who smoke and are overweight. I put my hand up to the overweight issue, but I have never smoked, had a very active job as a cleaner in a College, and I could possibly have been diagnosed when I was 42, and was finally diagnoses as Early Stage, and a few month later as Metastatic, when I was 47 years old. It is almost as though you can't have breast cancer unless you tick certain boxes, and yet so many women that I have known have been younger than me, thinner than me, exercised more than me and did innumerable other things 'right' and still have lost their lives to this disease. Breast feeding helps prevent ... wait a minute what about the woman who had breast-fed 8 children ... how many is the right number? More than 4 but less that 6? Pish-tosh.
So why can't we all join forces and try and make it out into the sun and the flash-lights of the Pink Carpet along with the survivors and those living after cancer treatment? MMBC? Men and Mets Breast Cancer anyone?
In the case of Metastatic Breast Cancer (MBC1) it is because we are an inconvenient Truth that doesn't fit marketing strategies. As for Male Breast Cancer (MBC2) it is because breast cancer as a whole has become equated with Pink ... Feminine ... Boobs. STOP! Rewind! Men have breasts as well don't they, just like we both have skin, livers, stomachs, bones, bowels ... you get the drift. The statistical fact that men make up a much smaller part of the numbers of people with BC doesn't mean that they don't exist. It doesn't mean that they aren't an equally important part of the equation.
When the talk is about Survivors and Life After Breast Cancer, men fall into both categories. Unfortunately because so many men down realise that they too can have breast cancer, they fall into the categories of Metastatic and Treatment Until Death far to often. The first two categories are justifiably celebrated. There is not a single person with MNC1 who wants even one more member of our 'Gang'. For all the right reasons we don't want them to know what incurable cancer feels like; we want them to be able to move on and savour Life After Breast Cancer. However, those in the first two categories should not shun those in the Incurable and Treatment Until Death sections. They must learn to accept us and our journey, just as we celebrate theirs.
Breast Cancer is an equal opportunity disease. It doesn't care about your gender, age, race, ethnicity, background, education, sexual orientation or religion, or any of those other 'labels' that humans can be filed under. It will take anyone who gets in its way, but if you are lucky to have successful treatment in the early stages you have a good chance of being able to leave it by the wayside as you move on.
But those labels - boy, can they stick; and not just with the general public, but also with the medical profession who seem to want to pigeon-hole breast cancer as a disease of those over 50, who smoke and are overweight. I put my hand up to the overweight issue, but I have never smoked, had a very active job as a cleaner in a College, and I could possibly have been diagnosed when I was 42, and was finally diagnoses as Early Stage, and a few month later as Metastatic, when I was 47 years old. It is almost as though you can't have breast cancer unless you tick certain boxes, and yet so many women that I have known have been younger than me, thinner than me, exercised more than me and did innumerable other things 'right' and still have lost their lives to this disease. Breast feeding helps prevent ... wait a minute what about the woman who had breast-fed 8 children ... how many is the right number? More than 4 but less that 6? Pish-tosh.
So why can't we all join forces and try and make it out into the sun and the flash-lights of the Pink Carpet along with the survivors and those living after cancer treatment? MMBC? Men and Mets Breast Cancer anyone?
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.
Saturday, 22 June 2013
3.30am ... can't sleep, again
In the wee small hours of the morning, when the whole wide world is fast asleep ... I lie awake wondering why that sounds so nice as a lyric to a song, when the truth is ... what the hell do I do until I am tired enough to go back to sleep?
I am in a bit of a pattern of waking about 3am until about 5am and then going back to sleep for a few hours. At least I now don't have to get up to go to work by 8.30 as I now start work at 2pm, but I am finding it difficult to tell what time of day it is, and what day of the week it is as well. My hours of work were changed and the number of hours I work was cut in the reorganisation of my part of the College. Working in Education has its advantages, even for the Minions in the Support Staff, because I only have to work during term time but this reorganisation has left me feeling pretty side-lined partly because I feel disconnected with what is going on in the rest of the place.
What to do about not being able to sleep right now? I live in a terraced house so I can't do some sewing on my machine in case I wake up the baby next door. Experience tells me that Teddy Bears are not great conversationalists at this time in the morning. I am actually too tired to read, but not tired enough to sleep. Actually, does any of this make sense? Am I rambling?
There was a time I could sleep well all night. Now I toss and turn trying to get comfortable. I have gone back to having the radio on low so that it distracts my thoughts just enough to get to sleep.
I think I have bored myself enough and I need to get back to bed and sleep. Night!
I am in a bit of a pattern of waking about 3am until about 5am and then going back to sleep for a few hours. At least I now don't have to get up to go to work by 8.30 as I now start work at 2pm, but I am finding it difficult to tell what time of day it is, and what day of the week it is as well. My hours of work were changed and the number of hours I work was cut in the reorganisation of my part of the College. Working in Education has its advantages, even for the Minions in the Support Staff, because I only have to work during term time but this reorganisation has left me feeling pretty side-lined partly because I feel disconnected with what is going on in the rest of the place.
What to do about not being able to sleep right now? I live in a terraced house so I can't do some sewing on my machine in case I wake up the baby next door. Experience tells me that Teddy Bears are not great conversationalists at this time in the morning. I am actually too tired to read, but not tired enough to sleep. Actually, does any of this make sense? Am I rambling?
There was a time I could sleep well all night. Now I toss and turn trying to get comfortable. I have gone back to having the radio on low so that it distracts my thoughts just enough to get to sleep.
I think I have bored myself enough and I need to get back to bed and sleep. Night!
Friday, 14 June 2013
Nature can help too ...
http://www.medicalnewstoday.com/articles/259069.php
So ... why are some people so against any of the natural substances that can help our bodies fight cancer, of any kind and not just breast cancer? Why isn't more notice taken of the Environmental factors which are influencing our chances of developing cancer? In 1964 there was a 1 in 20 chance of developing breast cancer during your life. In 1971 Richard Nixon declared 'war' on cancer. By 1981 there was a 1 in 14 chance and now it is 1 in 8. TRILLIONS of $, £, Euros, and other currencies have been spent on trying to find a cure for cancer ... or have they?
Less than 3% of the money donated to breast cancer research is used for trying to find ways of dealing with Metastatic Breast Cancer, which is the kind that kills hundreds of thousands of men and women annually. Please note that I mentioned that this is a disease which also kills men - a fact which is often ignored. The number of men who die is small in comparison to the number of women who die but since when did one life become more valuable than another for any reason ... and gender certainly isn't a reason.
Where has all the money gone?
Why are we being told that breast cancer rates are improving?
When I was born I had a 1 in 20 chance ... by the time I was diagnosed with breast cancer it was 1 in 8. NEWS FLASH - them ain't great odds and they are NOT getting better. I am not a statistician and even I can spot that this isn't the improvement that we are being told there is.
So ... why are some people so against any of the natural substances that can help our bodies fight cancer, of any kind and not just breast cancer? Why isn't more notice taken of the Environmental factors which are influencing our chances of developing cancer? In 1964 there was a 1 in 20 chance of developing breast cancer during your life. In 1971 Richard Nixon declared 'war' on cancer. By 1981 there was a 1 in 14 chance and now it is 1 in 8. TRILLIONS of $, £, Euros, and other currencies have been spent on trying to find a cure for cancer ... or have they?
Less than 3% of the money donated to breast cancer research is used for trying to find ways of dealing with Metastatic Breast Cancer, which is the kind that kills hundreds of thousands of men and women annually. Please note that I mentioned that this is a disease which also kills men - a fact which is often ignored. The number of men who die is small in comparison to the number of women who die but since when did one life become more valuable than another for any reason ... and gender certainly isn't a reason.
Where has all the money gone?
Why are we being told that breast cancer rates are improving?
When I was born I had a 1 in 20 chance ... by the time I was diagnosed with breast cancer it was 1 in 8. NEWS FLASH - them ain't great odds and they are NOT getting better. I am not a statistician and even I can spot that this isn't the improvement that we are being told there is.
Human genes can not be patented
The United States Supreme Court has ruled that companies can not patent human genes and stop others researching specific genes or developing tests.
http://bcaction.org/2013/06/13/victory-supreme-court-outlaws-human-gene-patents/
Why on earth was the patenting of human genes permitted? How could one company be allowed to 'own' a human gene and dictate what tests and research could be done with that gene. Whether or not you agree with Angelina Jolie's decision to have a double mastectomy because she is a carrier of one of the BCRA genes, the announcement came at a critical time to bring the cost of BCRA testing to the forefront of the press. I don't know if this was intentional, but I think it must have made millions aware of this situation. I don't deny any company the right to make a decent profit but some have taken this to obscene lengths. In the case of the Banks they have had their snouts in the trough so long they don't seem to have any concept of what are fair profits and ethical practices.
Do some companies even comprehend that there are profits to be made, and extortionate profits to be made? Value for money seems to be a concept that is foreign to them because they only value that they can see is profit for themselves and not value for the customer.
Health is a fundamental human right. It is one that can not be guaranteed, and it is not one that can be possible for all people, but just think where medicine would be now if previous generations of researchers and companies had taken a similar path to so many today. Sadly many of the biggest advances in treatments come as a result of war, as with plastic surgery in WW2 with improvements in the treatment of those badly burned, especially in the RAF. They came to realise that those who healed better were those who had been shot down over the sea, and that sea water had something to do with this healing process. What would the tucked and tightened of today do if those who had discovered this had patented it?
But not all of those who take out a patent do it to extract every last penny from their products. In an interview I saw on the internet there was one lady (can't find it now) who had a royalty cheque of about $2.70 the previous year for the genes she had patented, and such people only have to do this so they can be protected them for others to research for better treatments.
http://news.nationalgeographic.com/news/2013/06/130614-supreme-court-gene-patent-ruling-human-genome-science/
http://bcaction.org/2013/06/13/victory-supreme-court-outlaws-human-gene-patents/
Why on earth was the patenting of human genes permitted? How could one company be allowed to 'own' a human gene and dictate what tests and research could be done with that gene. Whether or not you agree with Angelina Jolie's decision to have a double mastectomy because she is a carrier of one of the BCRA genes, the announcement came at a critical time to bring the cost of BCRA testing to the forefront of the press. I don't know if this was intentional, but I think it must have made millions aware of this situation. I don't deny any company the right to make a decent profit but some have taken this to obscene lengths. In the case of the Banks they have had their snouts in the trough so long they don't seem to have any concept of what are fair profits and ethical practices.
Do some companies even comprehend that there are profits to be made, and extortionate profits to be made? Value for money seems to be a concept that is foreign to them because they only value that they can see is profit for themselves and not value for the customer.
Health is a fundamental human right. It is one that can not be guaranteed, and it is not one that can be possible for all people, but just think where medicine would be now if previous generations of researchers and companies had taken a similar path to so many today. Sadly many of the biggest advances in treatments come as a result of war, as with plastic surgery in WW2 with improvements in the treatment of those badly burned, especially in the RAF. They came to realise that those who healed better were those who had been shot down over the sea, and that sea water had something to do with this healing process. What would the tucked and tightened of today do if those who had discovered this had patented it?
But not all of those who take out a patent do it to extract every last penny from their products. In an interview I saw on the internet there was one lady (can't find it now) who had a royalty cheque of about $2.70 the previous year for the genes she had patented, and such people only have to do this so they can be protected them for others to research for better treatments.
http://news.nationalgeographic.com/news/2013/06/130614-supreme-court-gene-patent-ruling-human-genome-science/
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