Pardon my French, but at the moment I am in a bit (he-hum) mood. Pinktober is on its way and I am not looking forward to it. All the smiling and pretending that everything is great, that buying a pink ribbon really will make a difference when I know that it is a Pantomime. The heroes (hooray) and the villains (boo) and, worst of all, the happy ending.
Things are not good at work. The bloke I work with has been in a foul mood ever since the beginning of term and on Wednesday I eventually said why didn't he go home and he blew up. He was sitting there saying he had nothing to do so I asked him to do a couple of things and he growled that he was busy of facebook. I was trying to talk to someone on the phone and he starts playing a trailer for a TV series or film without the headphones plugged into the machine. Give him something to do and he bitches, leave him alone and he groans and the final straw was when he started tapping his pen on the desk. I've actually come to the conclusion that he was doing this on purpose. My suggestion that he went home was because he really hates being there and wasn't going to offer to help me with work that was marked for his attention as well as mine because he likes to pick and choose what he wants to do. He didn't come in on Thursday and started sending all this stuff through for me to do and when I asked that he didn't do so he emailed back, and I quote "Its what you getting F****** paid for you lazy bitch". I have tried leaving him to sulk, I have tried letting him pick what he wants to do, which is basically nothing for any length of time, and I have tried getting him to do other bits. None of it works. He just glowers in the corner like a spoilt child who is having to realise that he is in his late 50's and has a crap job which he chose to come back to after the summer holidays. I think I am beginning to understand why he has had a bewildering number of jobs over the years. He can't get another job, though heaven only knows he has spent enough work time applying for them on line and just doesn't want to accept that he is a minion and not management any more. On top of that the college has agreed this year to pay for him to do a teaching qualification, which as a member of staff he doesn't have to pay for! All he has to do is just get on with the job for an academic year then he might be able to do some teaching.
I fully admit that I am not always a ray of sunshine and which the systems problems that we have had this term I haven't been in the best frame of mind, but I accept that it is a job, and who else is going to employ someone diagnosed with Metastatic Breast Cancer five years and eight months ago, and so statistically is living well into borrowed time. Well all I can say to my colleague is put your big boy pants on and get on with it.
On top of this I have been trying to get some information from Breast Cancer Care, the only UK BC charity that takes an interest in Metastatic Breast Cancer, about what they are planning for 13 October - what they call 'Secondary' Breast Cancer Day. As of today, 29 September 2013 there is no information available. Like we can all make plans at such short notice and support whatever they are going to focus on. I see they have removed their most recent summary report which was for 2011, but basically this is the same information as they had up two years ago. http://www.breastcancercare.org.uk/campaigning-volunteering/campaigning/current-campaigns/spotlight-secondary-breast-cancer . I could become a Breast Cancer Voice, but I don't think they would want me because I am too vocal about what is not being done. I'm not Pink. At the moment I am a dark shade of blue.
Showing posts with label Secondary Breast Cancer. Show all posts
Showing posts with label Secondary Breast Cancer. Show all posts
Sunday, 29 September 2013
Friday, 23 August 2013
The closer it gets, aka I hate Breast Cancer Awareness Month
It's coming in about 5 weeks. The dreaded time of year when I will be constantly reminded that I am not one of the Survivors. That my pink ribbon has a band of black on it for the friends I have lost since the PinkFest last year ... Angela, Corinne, LaVonda - stop! The list is too long.
Here in the UK only one of the breast cancer charities actually seems to do any campaigning for Metastatic Breast Cancer, and I have gone back to their web site and it just seems to be the same thing that they were doing two years ago. They have figured out that support for those with MBC is inadequate (wonder how much they spent on that study/survey). Heck, they are still trying to find out how many of us there are in the UK living with Metastatic disease, though they actually got the pilot scheme up and running last year; so I guess that is some sort of progress.
Why are they wasting time and resources finding out what anyone could already tell them. Finding out what anyone involved with breast cancer clinics could easily tell them. Exactly how many years is this going to drag on before there is anything actually done ... I don't think I will live to see it, that's for sure.
Why is this? Because everyone has been brainwashed (not to mention Pinkwashed) into believing that breast cancer is a totally curable disease which is similar to having your appendix out. Nothing too serious and you get a free boob job thrown in if you are lucky. Breast Cancer is about pretty pale pink ribbons, pink wigs, pink t-shirts, pink feather boas and races, walks and wearing pink to work.
Isn't it?
Here in the UK only one of the breast cancer charities actually seems to do any campaigning for Metastatic Breast Cancer, and I have gone back to their web site and it just seems to be the same thing that they were doing two years ago. They have figured out that support for those with MBC is inadequate (wonder how much they spent on that study/survey). Heck, they are still trying to find out how many of us there are in the UK living with Metastatic disease, though they actually got the pilot scheme up and running last year; so I guess that is some sort of progress.
Why are they wasting time and resources finding out what anyone could already tell them. Finding out what anyone involved with breast cancer clinics could easily tell them. Exactly how many years is this going to drag on before there is anything actually done ... I don't think I will live to see it, that's for sure.
Evidently the pilot also found that four years since change was called for, 47% of the 598 patients identified were not recorded as having been referred to a breast or palliative care clinical nurse specialist or any other key worker following the diagnosis of their recurrence/metastasis.That's because there are virtually no breast clinical nurse specialists for Metastatic patients because all the support goes to those with Early Stage Breast Cancer, who of course, since they are considered curable, really need all the support rather than those of us with the incurable form of the disease who need none. That is obvious, isn't it?
Why is this? Because everyone has been brainwashed (not to mention Pinkwashed) into believing that breast cancer is a totally curable disease which is similar to having your appendix out. Nothing too serious and you get a free boob job thrown in if you are lucky. Breast Cancer is about pretty pale pink ribbons, pink wigs, pink t-shirts, pink feather boas and races, walks and wearing pink to work.
Isn't it?
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.
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