There was a time when I came online and there were lots of cyber friends here and lots going on. It doesn't feel like that any more. I used to spend hours reading every post on Inspire and usually answering every one, but I don't go there any more because I don't feel that I belong there any more.
Is this the Metastatic Breast Cancer equivalent of a Mid-Life Crisis? I was diagnosed with breast cancer over 6 years ago, and in January it will be 6 years since they finally twigged that I really did have a problem with my hip and I was Stage IV all along. Statistically I have been dead for over 3 years ... there is only one thing 'wrong'. I'm not dead though, if truth be told, I wouldn't mind being dead.
My main problem with getting support is that I am not dying quickly enough. I had CBT therapy, but they cut me free with the promise that if I had problems within six months I could just go straight back into the system. They lied. When I called I was told I would have to referred all over again and there was not guarantee that I would see the same therapist. I saw the counsellor at the local Hospice for a while, but again I didn't die quickly enough so they discharged me. When you are in no-mans-land of being stable no one is interested in supporting you. My brother and his family are too busy to do anything to help me, except occasionally to ask me round for a meal. If I drop in I feel as though I am intruding, or no one is in. That said my niece is supposed to come an help me clear some stuff out of the house next week, but I'll wait to see if she actually turns up. It is usually the case that if there is some paint to watch dry somewhere that comes first.
Part of the problem is that so few people are aware of MBC because there are three stages of breast cancer ... being a survivor, having a recurrence and end of life/death, and most folks know all about the first 'Pink' stage, wants to ignore the second, and only vaguely acknowledges the third when it is quoted to raise money for a 'cure'; aka treatment for Early Stage Breast Cancer.
At the moment I am off work with depression and stress from having worked the equivalent of over one and a half extra weeks in the last 7 weeks and now being told I have to get out of the office I have been in and go into the big main office with people who made a friend's life such a misery when she worked there that she left ... or in a converted cupboard. What is even worse is that the people moving in to the office I was in don't even work for the organisation!
Do I feel as though I can express any of this ... no. Why? Because breast cancer is Pink and it is all about survivors who on the whole would rather eat something from the jungle than admit that we exist. After all be don't want to stress them out, do we? They are the important ones. They have Primary BC and they are Survivors.
How can I express to my line manager the embarrassment of not being able to just get up and walk away from the chair because of the pain in my hips and lower back? How do I explain that it is good to be near the loos because sometimes I just have to 'use the facilities'? How do I explain that I don't want to be seen falling asleep at the mouse because I am so tired, or I just plain forget what I am doing and express my frustration about this? How do I explain that sometimes I just sit and cry because I am tired, fed up, a friend has just died, I want the pain to go away and a myriad of other reasons. How can I explain that sometimes I just need to be able to pull myself together without the critical stares of others? How do I solve a problem like Vicki?
Showing posts with label caring. Show all posts
Showing posts with label caring. Show all posts
Sunday, 27 October 2013
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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