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.
Sunday, 29 September 2013
Saturday, 21 September 2013
4 April 2014 Stage IV (Metastatic) Breast Cancer Day in the UK
If anyone is interested in this I have started a facebook page https://www.facebook.com/groups/1420485158172456/
The Haven is coming my way.
In the UK we have a charity now called The Haven, formerly the Breast Cancer Haven, which I have always wanted to be able to go to. Inevitably is started in London, then they set up one in Hereford and then Leeds. Now they are raising funds to open a Haven in my area, and this news comes hot on the heels of finding that there is going to be a Maggie's Centre in Southampton.
Trying to get to London for early in the day is a long journey by trains packed with commuters, and it also costs a lot of money so it has always been out of the question for me; and yet the approach of The Haven, like that of the Penny Brohn Cancer Centre, is very holistic with alternative therapies, nutrition and Mindfulness Based Stress Reduction meditation at its core. Dr Caroline Hoffman PhD from The Haven was the person who facilitated the MBSR trial that I took part in and which was actually only for those of us with Metastatic Breast Cancer. This was done through Southampton General Hospital where my oncologist is based. This sort of approach is exactly the approach I have taken to learn to deal with having incurable cancer.
http://www.thehaven.org.uk/how-you-can-support-us/haven-wessex-appeal
Maggie's Centres are similar, but maybe just a bit more of a drop in type of place and are for those with all types of cancer. The started in Edinburgh and are spreading. They deal with Financial advice, nutrition, support groups for patients and families, exercise, creative writing etc.
http://maggiescentres.org/southampton/introduction.html
The most interesting thing will be to see what they do for Metastatic Breast Cancer, and how inclusive they would be. I feel very wary of getting involved with cancer related things because I am 'out' about being Metastatic and there is always that awkwardness about now people react to this. I guess it is a tiny bit like being gay and coming out. It's that 'Oh!' moment followed by a silence as their brain recomputes what to say next. It is just a fact of my life; can't change it, so get on with it.
Only a couple of days ago I was having a day dream about winning a huge amount on the Lottery and how I would tell certain people at work to hand in their notice because I was setting up a Metastatic Breast Cancer Centre, probably in the same village that I work in, and grew up in, because of the good transport links. Who says dreams don't come true?
Trying to get to London for early in the day is a long journey by trains packed with commuters, and it also costs a lot of money so it has always been out of the question for me; and yet the approach of The Haven, like that of the Penny Brohn Cancer Centre, is very holistic with alternative therapies, nutrition and Mindfulness Based Stress Reduction meditation at its core. Dr Caroline Hoffman PhD from The Haven was the person who facilitated the MBSR trial that I took part in and which was actually only for those of us with Metastatic Breast Cancer. This was done through Southampton General Hospital where my oncologist is based. This sort of approach is exactly the approach I have taken to learn to deal with having incurable cancer.
http://www.thehaven.org.uk/how-you-can-support-us/haven-wessex-appeal
Maggie's Centres are similar, but maybe just a bit more of a drop in type of place and are for those with all types of cancer. The started in Edinburgh and are spreading. They deal with Financial advice, nutrition, support groups for patients and families, exercise, creative writing etc.
http://maggiescentres.org/southampton/introduction.html
The most interesting thing will be to see what they do for Metastatic Breast Cancer, and how inclusive they would be. I feel very wary of getting involved with cancer related things because I am 'out' about being Metastatic and there is always that awkwardness about now people react to this. I guess it is a tiny bit like being gay and coming out. It's that 'Oh!' moment followed by a silence as their brain recomputes what to say next. It is just a fact of my life; can't change it, so get on with it.
Only a couple of days ago I was having a day dream about winning a huge amount on the Lottery and how I would tell certain people at work to hand in their notice because I was setting up a Metastatic Breast Cancer Centre, probably in the same village that I work in, and grew up in, because of the good transport links. Who says dreams don't come true?
Wednesday, 18 September 2013
Going a bit mad here ... 4.4.2013 as Metastatic Breast Cancer Day?
This year the Triple Negative Breast Cancer Foundation had its inaugural Triple Negative Beast Cancer Day on 3 March - 3.3.2013 http://www.tnbcfoundation.org/tnbcday/index.html which they are planning to continue with in 2014.
Just before they announced this I was thinking that 4.4 should be for Stage IV Breast Cancer. This is partly because the confusing I have about dates being written as two number because in the UK we put the day first and then the month, and in the US it is the month and then the day. I get confused unless the date is obvious like 13.02, because there are only 12 months in the year (see how clever I am). A friend was married this year on the third of January, which to her was 1.3.2013, but to me was 3.1.2013 - see the confusion. This led me to think that if you have the same day and the same numbered month then no one can get confused, and then the TNBCF announced 3.3.2013.
So why can't 4.4.2013 be an inaugural Metastatic Breast Cancer Day to get us away from the who Pinktober thing. No one takes any notice of us in October anyway and to be given just one day when the whole month should be more about MBC than Early Stage BC. This day, 4 April, doesn't really have to be recognised by anyone but us and then try to spread the word. We are not little children who have to ask permission to do something. We are adults with an incurable disease and we would really like people to know how little support we get, and how little of the BC research funding goes to help us. We are dying for research funding, literally.
It would be great if some of you would respond to this. I don't have many friends, and those that I do on facebook at least, have probably blocked my posts because they focus on breast cancer and they just don't want to know. Even my family never responds to anything that I post!
In fact wouldn't it be great if we could establish April and Stage IV Cancer Month ... or have I gone mad?
Just before they announced this I was thinking that 4.4 should be for Stage IV Breast Cancer. This is partly because the confusing I have about dates being written as two number because in the UK we put the day first and then the month, and in the US it is the month and then the day. I get confused unless the date is obvious like 13.02, because there are only 12 months in the year (see how clever I am). A friend was married this year on the third of January, which to her was 1.3.2013, but to me was 3.1.2013 - see the confusion. This led me to think that if you have the same day and the same numbered month then no one can get confused, and then the TNBCF announced 3.3.2013.
So why can't 4.4.2013 be an inaugural Metastatic Breast Cancer Day to get us away from the who Pinktober thing. No one takes any notice of us in October anyway and to be given just one day when the whole month should be more about MBC than Early Stage BC. This day, 4 April, doesn't really have to be recognised by anyone but us and then try to spread the word. We are not little children who have to ask permission to do something. We are adults with an incurable disease and we would really like people to know how little support we get, and how little of the BC research funding goes to help us. We are dying for research funding, literally.
It would be great if some of you would respond to this. I don't have many friends, and those that I do on facebook at least, have probably blocked my posts because they focus on breast cancer and they just don't want to know. Even my family never responds to anything that I post!
In fact wouldn't it be great if we could establish April and Stage IV Cancer Month ... or have I gone mad?
Thursday, 12 September 2013
Watching paint dry is better than this!
So is the start of a new academic year where I work. One week ago I went in to check that I could get on the systems and change my password etc only to find that the office had been stripped of shelves, drawer units and some other things, like the kettle. An extra desk had been shoved in making it necessary to climb over the desks to get to the windows to open them, because someone nicked the window pole last term. I thought that was bad.
Went into work on Monday to find that the systems aren't working properly and some of the functions that I rely on to do my job have disappeared altogether. We were told not to come in on Tuesday because they might be able to sort it ... Wednesday couldn't do anything ...Thursday (today) couldn't do anything and have been told not to go in tomorrow. It has been so mind numbingly boring that I was sure that somewhere there must be some paint to watch dry which would be more interesting.
What is even worse is that some people are rushed off their feet and no one will let me help them, partly because I don't have access to, and training on, their systems. And, because everything is no computer based there isn't even some filing to help out with.
Who would have thought that washing up my mug at the end of the day would be the highlight of the day?
Went into work on Monday to find that the systems aren't working properly and some of the functions that I rely on to do my job have disappeared altogether. We were told not to come in on Tuesday because they might be able to sort it ... Wednesday couldn't do anything ...Thursday (today) couldn't do anything and have been told not to go in tomorrow. It has been so mind numbingly boring that I was sure that somewhere there must be some paint to watch dry which would be more interesting.
What is even worse is that some people are rushed off their feet and no one will let me help them, partly because I don't have access to, and training on, their systems. And, because everything is no computer based there isn't even some filing to help out with.
Who would have thought that washing up my mug at the end of the day would be the highlight of the day?
Sunday, 8 September 2013
Caring, but at what price?
I have just been reading a book review in the New York Times today http://www.nytimes.com/2013/09/08/books/review/knocking-on-heavens-door-by-katy-butler.html?pagewanted=1&_r=0 and it has brought back memories of my childhood, which was spent in the shadow of a father dying of emphysema, angina and progressive blindness from glaucoma.
The book is inspired by the plight of the author's parents after her father suffered a stroke. “Only later would I understand the rush,” Butler writes. “The hospital was losing money on him with every passing day. Out of $20,228 in services performed and billed, Medicare would reimburse Middlesex Memorial only $6,559, a lump sum based on the severity of my father’s stroke diagnosis.” The problem of reimbursement for services rendered is not part of the British experience because we have the National Health Service, though the question of the cost of keeping a patient alive would certainly be a part of the equation here, but it is the consequences of the treatment which concerns me.
My mother spelt on a mattress on the sitting room floor after it was deemed that my brother and I should have separate rooms when we got to a certain age. One of the things my brother and I had to do before going to bed was to bring her mattress into the sitting room. It was the only way that she could get much sleep, and even that would depend on how well my father was during the night.
Father died just over two weeks after my 18th birthday, it was almost as though he had been waiting for me to be an 'adult' before he went. He cast a mighty shadow over my life and his illnesses hastened the end of my mother's life. She was 22 years younger than my father, but died 11 years after him at the age of 68. When you compare this with her siblings; a sister who is still going strong at 89, one brother who died aged 90 and the other aged 97 it puts a spotlight on her death at over twenty years younger than them at the time of death.
When my father did die it was strange because for the first time that I could remember we didn't have to go out and get, or do, whatever we needed and rush home because father might be ill and was in need of constant attendance. The idea of being able to browse in shops, stop for a chat, just do things without making arrangements was quite foreign to our whole way of thinking. The needs of my father over rode the needs of anyone else in the family and the strain of trying not to upset him and bring on an angina attack was not an easy thing with someone on steroids in the 60's and 70's. It is 35 years since he died and there wasn't even the possibility of having a mobile phone to remain in contact when we were out of the house.
The strain of being a carer for someone is not to be underestimated by anyone if the one they are caring for has a long term chronic illness. We are not talking about months of caring, but years of caring. My mother also ran the house, looked after a large garden which my father insisted should have big vegetable beds, partly because his family were Market Gardeners, and partly because they had lived through WW2 with food shortages, and that was just what people did then. A garden was not an outside room, it was a factory for food. All this with no help, but a lot of criticism, from my father, and in hind sight I would have to say with little help from my brother and I. To us severe and chronic illness was just a normal part of life. I have no memories of 'playing' with my father, but I remember the challenge every Spring to see if he could make it to the bench by the allotments in the village.
What would medical science have done to him today? Would they have fitted a pace maker and resuscitated him repeatedly? As it was he was able to go in his own time, and when his formidable determination had finally run its course. When I was 12 doctors had given up on him and left him to die only to find he was still alive the next day. This came in between my have an appendectomy and a few weeks later some large kidney stones removed. My mother took up smoking again during this period - surprise, surprise.
So should the ability of medical science to keep someone alive over ride the natural process of dying? It is a difficult balance to achieve; a moral and ethical minefield that exorcises the medical and legal professions as well as the religious sensibilities of many. My father often said that they would not keep a dog alive in the condition he was in, but his own will to live was also strong as he often showed. Ultimately I think the decision has to be made for and in the best interests of the family. It is all very well doing 'miracles' of keeping people alive, but those who do the miracles don't have to live with the long term consequences. We all have to be allowed to go in our own time. It is scary, and something I have been forced to think of since my diagnosis of incurable Metastatic Breast Cancer. I don't want to be a burden on anyone and have them put their own life on hold for me. I want to be allowed to go when my time is right. That doesn't mean that I won't fight for life for myself or others, but we have to be realistic to realise that we don't have the right to overstep the boundary of death and pull people back to a life they would not want for themselves, and if the carers could say so probably also a life that they don't want. It has nothing to do with how much you love or care for someone, or whether you can give that love and caring, it is because in the end nature has the greatest power over all living things and we should respect that.
The book is inspired by the plight of the author's parents after her father suffered a stroke. “Only later would I understand the rush,” Butler writes. “The hospital was losing money on him with every passing day. Out of $20,228 in services performed and billed, Medicare would reimburse Middlesex Memorial only $6,559, a lump sum based on the severity of my father’s stroke diagnosis.” The problem of reimbursement for services rendered is not part of the British experience because we have the National Health Service, though the question of the cost of keeping a patient alive would certainly be a part of the equation here, but it is the consequences of the treatment which concerns me.
My mother spelt on a mattress on the sitting room floor after it was deemed that my brother and I should have separate rooms when we got to a certain age. One of the things my brother and I had to do before going to bed was to bring her mattress into the sitting room. It was the only way that she could get much sleep, and even that would depend on how well my father was during the night.
Father died just over two weeks after my 18th birthday, it was almost as though he had been waiting for me to be an 'adult' before he went. He cast a mighty shadow over my life and his illnesses hastened the end of my mother's life. She was 22 years younger than my father, but died 11 years after him at the age of 68. When you compare this with her siblings; a sister who is still going strong at 89, one brother who died aged 90 and the other aged 97 it puts a spotlight on her death at over twenty years younger than them at the time of death.
When my father did die it was strange because for the first time that I could remember we didn't have to go out and get, or do, whatever we needed and rush home because father might be ill and was in need of constant attendance. The idea of being able to browse in shops, stop for a chat, just do things without making arrangements was quite foreign to our whole way of thinking. The needs of my father over rode the needs of anyone else in the family and the strain of trying not to upset him and bring on an angina attack was not an easy thing with someone on steroids in the 60's and 70's. It is 35 years since he died and there wasn't even the possibility of having a mobile phone to remain in contact when we were out of the house.
The strain of being a carer for someone is not to be underestimated by anyone if the one they are caring for has a long term chronic illness. We are not talking about months of caring, but years of caring. My mother also ran the house, looked after a large garden which my father insisted should have big vegetable beds, partly because his family were Market Gardeners, and partly because they had lived through WW2 with food shortages, and that was just what people did then. A garden was not an outside room, it was a factory for food. All this with no help, but a lot of criticism, from my father, and in hind sight I would have to say with little help from my brother and I. To us severe and chronic illness was just a normal part of life. I have no memories of 'playing' with my father, but I remember the challenge every Spring to see if he could make it to the bench by the allotments in the village.
What would medical science have done to him today? Would they have fitted a pace maker and resuscitated him repeatedly? As it was he was able to go in his own time, and when his formidable determination had finally run its course. When I was 12 doctors had given up on him and left him to die only to find he was still alive the next day. This came in between my have an appendectomy and a few weeks later some large kidney stones removed. My mother took up smoking again during this period - surprise, surprise.
So should the ability of medical science to keep someone alive over ride the natural process of dying? It is a difficult balance to achieve; a moral and ethical minefield that exorcises the medical and legal professions as well as the religious sensibilities of many. My father often said that they would not keep a dog alive in the condition he was in, but his own will to live was also strong as he often showed. Ultimately I think the decision has to be made for and in the best interests of the family. It is all very well doing 'miracles' of keeping people alive, but those who do the miracles don't have to live with the long term consequences. We all have to be allowed to go in our own time. It is scary, and something I have been forced to think of since my diagnosis of incurable Metastatic Breast Cancer. I don't want to be a burden on anyone and have them put their own life on hold for me. I want to be allowed to go when my time is right. That doesn't mean that I won't fight for life for myself or others, but we have to be realistic to realise that we don't have the right to overstep the boundary of death and pull people back to a life they would not want for themselves, and if the carers could say so probably also a life that they don't want. It has nothing to do with how much you love or care for someone, or whether you can give that love and caring, it is because in the end nature has the greatest power over all living things and we should respect that.
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