I wrote in a message to a friend last week that I feel like the first Act of a play has finished, and with that I have felt adrift. When I first thought of putting metaphorical pen to paper it was before the last cycle of chemo and, more importantly, my appointments with the twin leaders in my treatment: my oncologist and my breast surgeon. I knew from feeling the lump that it had changed but I have tried not to have false hope for the process and appreciated I needed objective evidence to confirm the changes had happened before I could attribute them to treatment. It was agony, but I knew I just had to wait. As the side-effect symptoms diminished towards the end of the last cycle, I began to feel more like me of the old days but, again, not. I could not work; I have to be careful of where I go; I can’t do jobs around the house that expose me to infections; I need to go to bed by about 9.30pm; I don’t want to drink alcohol and a dizzy tiredness can come on me without warning; in short, I live something of a half-life. Better this than no life, but it became increasingly difficult to live with these restrictions without knowing they were working. Long ago I used to tell myself the sign of a good holiday was losing sense of what day it was, a sign that you have unwound from the pressures of life. Now I was finding myself with no notion of whether it was Monday, Friday or even Saturday, because each day presents the same choices and challenges. I know this isn’t necessarily a bad thing but, with my structures falling away, it became more of a challenge to try and live some part of my life without cancer as the primary focus. With only cancer as a focus, I became more doubting of my choices: was it safe to go outside; was it safe to cycle; should I be taking pain relief; was I becoming dependent on my pain relief? In short, my anxiety, which up until now had been managed quite well, was taking over. That isn’t a surprise, but I have persistent depressive disorder, a form of high functioning depression, and with the anxiety usually comes an increase in depressive symptoms. It has taken me many years to accept the fact that I have this diagnosis for a condition that can be treated. With that acceptance has come a steadying, and a marked decline, in symptoms. The irony is not lost on me. Now that I am prepared to accept that label I had fought against for a great deal of my adult life, as it seemed so limiting, I am now much stronger and feel more liberated. This isn’t all down to me; there is much more acceptance for mental health conditions to be admitted these days and, whilst many are still ashamed of their lack of perfection and try and hide it, more and more people who live valuable and valid lives are owning up to the fact that it’s all a bit of a struggle from time to time. The line between ‘them’, the mentally ill, and ‘us’, the mentally healthy, is blurring and with it the awful suffering that accompanies such artificial divisions of humanity. However, there still remains in some quarters a sort of received ‘British stiff upper lip’ wisdom that once you have a real problem to deal with, all this notion of ‘mental health’ fades as people stop attention seeking and get on with things properly. Those of us who know anything about PTSD realise these outdated beliefs should be filed alongside phrenology and leeches as nonsense. The things we see, and the things we do, leave impressions in our minds. I can now admit to you all that I slipped into, what my GP labels ‘suicidal ideation’. It’s okay; you can all stand down messaging me the Samaritans’ numbers, because I have climbed out of that pit but it is a dark and very familiar place where lurks the monster of my deep. For those of you who have never strayed into such dangerous territory this must, at the very least, be perplexing. Why now? Especially when all I’ve had is good news about my cancer. Do I want to stay centre stage in my own drama? Have I made much too much fuss and need to buckle down and get on? Well, no, it’s all to do with the much-used metaphor of those who deal with cancer patients: rollercoasters. The websites and handouts with cancer information for those with a diagnosis frequently use the term ‘rollercoaster’ to explain the emotional journey you travel on from diagnosis onwards. A frequently used term to describe my handling of my breast cancer diagnosis has been ‘positive’. ‘You’re so positive’ is bandied as a term of endearment, but I’ve not actually received it as such. It’s all down to definitions I suppose. I see ‘positive’ as a bland grin in the face of all odds, and I feel anything but bland. I know people don’t necessarily mean the term as I interpret it, but I suppose I’m not afraid to talk about the cancer and my fears. The utter terror of worrying I had advanced cancer before my test results will live with me for many years, if not the rest of my life. But with the knowledge that not only have I not got advanced breast cancer, but I am also I am responding extremely well to the chemotherapy, you would think relief and happiness would suffuse my being. Sadly, no. My first thoughts were ‘well if my life is being saved, what is it being saved for?’ and thus the spiral down began. My FLM (who continues her daily phone calls) is adamant I am needed at work and that there is much, including the right man, out there for me, once I get back to life. Now, that is positivity. Despite any of the hurdles of her life, she has relentlessly pedalled her ‘nonsense’ at me. I could perhaps argue that is just her style, but she isn’t alone in seeing a place for me in life, so why did I slip so far into depression I considered refusing treatment? Time for the rollercoaster analogy to be dug out and inspected. One of the difficult things to get your head round is the indiscriminate nature of cancer. Yes, the Daily Mail (other forms of cat litter tray liner are available) and its ilk eagerly publish dubious correlational research as fact to explain causes of the disease. By extension these ‘causes’ can have blame attached to them; so if you’ve spent a life eating sausages, smoking 60 a day and glugging Bulgarian Cabernet Sauvignon, then really you only have yourself to blame. However, for most people, cancer isn’t like that, or at least that’s what we know now. Cancer can come out of the blue to an apparently healthy person and kill them in a matter of weeks. Cancer can run in families but somehow miss some members, despite shared lifestyles and genes. Two people can have the same treatment at the same time, yet one goes on to develop further tumours and the other returns to a life liberated from the chemo pump. Does it help to ask why? At this point some of you will be worrying that I’m veering into talk of faith, but actually no, I won’t insult you, even if you are naïve enough to be an atheist. To attribute the inexplicable to something else (e.g. a god) is to not grasp the reality of life: none of us is getting out of here alive and to lose people we love hurts, a lot. Cancer remains a nasty stain on all our lives and a terror at which we shudder. I know this because I know how many people have gone beyond anything I could imagine to be kind to me. I have been made to feel valuable and important in ways that sends my anxious, depressed mind rocketing into overload. I have not been forgotten, belittled, or blamed. Except by the demons within. With the knowledge that the drugs seem to be working has come guilt. Guilt that I am surviving and, as such an imperfect person, what on earth can I do that warrants being saved? The guilt also managed to dig into my memories, churning them round into a pile of crimes against others and, more importantly, myself. The problem is that once you start sliding downwards, the help others can give barely touches you. The pain of being you is so extreme that others fade behind a wall and slowly, but relentlessly, the notion that to stop the pain you have to end it all moves from being an insane notion to a game plan. It’s like you are in a dark tunnel and the only escape into a pin prick of light far in the distance is an ending of the pain. I have been in that dark tunnel a number of times, and fortunately have managed to hold on for long enough for the tunnel to fade, an illusion of the pain that fades with it. But why now? Surely the physical battle to stay alive is enough; why the indulgence of this mental torment? This is where the nursing staff have been brilliant, both in hospital and at my GP surgery. They don’t belittle me for demons; they don’t question quite how low I’ve got and silly I am; they stand alongside. The nurse who did my latest blood test and gave me my flu jab just said, “Of course it’s hard; the treatment isn’t pleasant”. It was like a light went on. All those demons belittling me bleached out into nothing. But not for long. I came up and went down again, into the turmoil of self-loathing. However, the kindness of others, both professional nursing staff and friends, has just about held me together through this last arduous chemotherapy phase. I ache most of the time; I can’t taste things like I used to; I’m getting sores that do not heal; and my hair continues to fall out. It’s really tough and I can only do this because I know I’ve been given a chance. There lurks a small, logical voice at the back of my head that says, “It may not always be this easy”, and I am aware that not all cancer stories are happy ever after. But if kindness could be bottled into Happy Ever After spray, I'd hold the biggest store in the world; one strong enough to fight those awkward demons pushing me down the next run on the rollercoaster
Tuesday, 30 October 2018
Rollercoasters
Even in the midst of
treatment for cancer I have found something to admonish myself for. Part of my
soul is relieved as, since I found that lump at the end of June, I seem to be
reinventing myself as a wise and content woman of strength, dealing maturely
with the challenges that have been thrown up. I can now assure you that inside
all that dressing there still lurks a very frightened child screaming ‘why me?’
and ‘it’s all my fault; I deserve this’. Yes, very confusing I agree. So what
disappointment has simultaneously soothed and reprimanded? The fact that I
promised myself (and by extension my band of readers) a blog at each stage of
this process and yet weeks and events have passed with my fingers not reaching
for the keyboard. I have thought about writing a number of times and even,
unusually for me, thought of a title for the blog before setting finger to
keyboard; but it is only now, when I know I’ve ‘let myself down’ that I can get
to the job of writing. Why? What is happening now?
I wrote in a message to a friend last week that I feel like the first Act of a play has finished, and with that I have felt adrift. When I first thought of putting metaphorical pen to paper it was before the last cycle of chemo and, more importantly, my appointments with the twin leaders in my treatment: my oncologist and my breast surgeon. I knew from feeling the lump that it had changed but I have tried not to have false hope for the process and appreciated I needed objective evidence to confirm the changes had happened before I could attribute them to treatment. It was agony, but I knew I just had to wait. As the side-effect symptoms diminished towards the end of the last cycle, I began to feel more like me of the old days but, again, not. I could not work; I have to be careful of where I go; I can’t do jobs around the house that expose me to infections; I need to go to bed by about 9.30pm; I don’t want to drink alcohol and a dizzy tiredness can come on me without warning; in short, I live something of a half-life. Better this than no life, but it became increasingly difficult to live with these restrictions without knowing they were working. Long ago I used to tell myself the sign of a good holiday was losing sense of what day it was, a sign that you have unwound from the pressures of life. Now I was finding myself with no notion of whether it was Monday, Friday or even Saturday, because each day presents the same choices and challenges. I know this isn’t necessarily a bad thing but, with my structures falling away, it became more of a challenge to try and live some part of my life without cancer as the primary focus. With only cancer as a focus, I became more doubting of my choices: was it safe to go outside; was it safe to cycle; should I be taking pain relief; was I becoming dependent on my pain relief? In short, my anxiety, which up until now had been managed quite well, was taking over. That isn’t a surprise, but I have persistent depressive disorder, a form of high functioning depression, and with the anxiety usually comes an increase in depressive symptoms. It has taken me many years to accept the fact that I have this diagnosis for a condition that can be treated. With that acceptance has come a steadying, and a marked decline, in symptoms. The irony is not lost on me. Now that I am prepared to accept that label I had fought against for a great deal of my adult life, as it seemed so limiting, I am now much stronger and feel more liberated. This isn’t all down to me; there is much more acceptance for mental health conditions to be admitted these days and, whilst many are still ashamed of their lack of perfection and try and hide it, more and more people who live valuable and valid lives are owning up to the fact that it’s all a bit of a struggle from time to time. The line between ‘them’, the mentally ill, and ‘us’, the mentally healthy, is blurring and with it the awful suffering that accompanies such artificial divisions of humanity. However, there still remains in some quarters a sort of received ‘British stiff upper lip’ wisdom that once you have a real problem to deal with, all this notion of ‘mental health’ fades as people stop attention seeking and get on with things properly. Those of us who know anything about PTSD realise these outdated beliefs should be filed alongside phrenology and leeches as nonsense. The things we see, and the things we do, leave impressions in our minds. I can now admit to you all that I slipped into, what my GP labels ‘suicidal ideation’. It’s okay; you can all stand down messaging me the Samaritans’ numbers, because I have climbed out of that pit but it is a dark and very familiar place where lurks the monster of my deep. For those of you who have never strayed into such dangerous territory this must, at the very least, be perplexing. Why now? Especially when all I’ve had is good news about my cancer. Do I want to stay centre stage in my own drama? Have I made much too much fuss and need to buckle down and get on? Well, no, it’s all to do with the much-used metaphor of those who deal with cancer patients: rollercoasters. The websites and handouts with cancer information for those with a diagnosis frequently use the term ‘rollercoaster’ to explain the emotional journey you travel on from diagnosis onwards. A frequently used term to describe my handling of my breast cancer diagnosis has been ‘positive’. ‘You’re so positive’ is bandied as a term of endearment, but I’ve not actually received it as such. It’s all down to definitions I suppose. I see ‘positive’ as a bland grin in the face of all odds, and I feel anything but bland. I know people don’t necessarily mean the term as I interpret it, but I suppose I’m not afraid to talk about the cancer and my fears. The utter terror of worrying I had advanced cancer before my test results will live with me for many years, if not the rest of my life. But with the knowledge that not only have I not got advanced breast cancer, but I am also I am responding extremely well to the chemotherapy, you would think relief and happiness would suffuse my being. Sadly, no. My first thoughts were ‘well if my life is being saved, what is it being saved for?’ and thus the spiral down began. My FLM (who continues her daily phone calls) is adamant I am needed at work and that there is much, including the right man, out there for me, once I get back to life. Now, that is positivity. Despite any of the hurdles of her life, she has relentlessly pedalled her ‘nonsense’ at me. I could perhaps argue that is just her style, but she isn’t alone in seeing a place for me in life, so why did I slip so far into depression I considered refusing treatment? Time for the rollercoaster analogy to be dug out and inspected. One of the difficult things to get your head round is the indiscriminate nature of cancer. Yes, the Daily Mail (other forms of cat litter tray liner are available) and its ilk eagerly publish dubious correlational research as fact to explain causes of the disease. By extension these ‘causes’ can have blame attached to them; so if you’ve spent a life eating sausages, smoking 60 a day and glugging Bulgarian Cabernet Sauvignon, then really you only have yourself to blame. However, for most people, cancer isn’t like that, or at least that’s what we know now. Cancer can come out of the blue to an apparently healthy person and kill them in a matter of weeks. Cancer can run in families but somehow miss some members, despite shared lifestyles and genes. Two people can have the same treatment at the same time, yet one goes on to develop further tumours and the other returns to a life liberated from the chemo pump. Does it help to ask why? At this point some of you will be worrying that I’m veering into talk of faith, but actually no, I won’t insult you, even if you are naïve enough to be an atheist. To attribute the inexplicable to something else (e.g. a god) is to not grasp the reality of life: none of us is getting out of here alive and to lose people we love hurts, a lot. Cancer remains a nasty stain on all our lives and a terror at which we shudder. I know this because I know how many people have gone beyond anything I could imagine to be kind to me. I have been made to feel valuable and important in ways that sends my anxious, depressed mind rocketing into overload. I have not been forgotten, belittled, or blamed. Except by the demons within. With the knowledge that the drugs seem to be working has come guilt. Guilt that I am surviving and, as such an imperfect person, what on earth can I do that warrants being saved? The guilt also managed to dig into my memories, churning them round into a pile of crimes against others and, more importantly, myself. The problem is that once you start sliding downwards, the help others can give barely touches you. The pain of being you is so extreme that others fade behind a wall and slowly, but relentlessly, the notion that to stop the pain you have to end it all moves from being an insane notion to a game plan. It’s like you are in a dark tunnel and the only escape into a pin prick of light far in the distance is an ending of the pain. I have been in that dark tunnel a number of times, and fortunately have managed to hold on for long enough for the tunnel to fade, an illusion of the pain that fades with it. But why now? Surely the physical battle to stay alive is enough; why the indulgence of this mental torment? This is where the nursing staff have been brilliant, both in hospital and at my GP surgery. They don’t belittle me for demons; they don’t question quite how low I’ve got and silly I am; they stand alongside. The nurse who did my latest blood test and gave me my flu jab just said, “Of course it’s hard; the treatment isn’t pleasant”. It was like a light went on. All those demons belittling me bleached out into nothing. But not for long. I came up and went down again, into the turmoil of self-loathing. However, the kindness of others, both professional nursing staff and friends, has just about held me together through this last arduous chemotherapy phase. I ache most of the time; I can’t taste things like I used to; I’m getting sores that do not heal; and my hair continues to fall out. It’s really tough and I can only do this because I know I’ve been given a chance. There lurks a small, logical voice at the back of my head that says, “It may not always be this easy”, and I am aware that not all cancer stories are happy ever after. But if kindness could be bottled into Happy Ever After spray, I'd hold the biggest store in the world; one strong enough to fight those awkward demons pushing me down the next run on the rollercoaster
I wrote in a message to a friend last week that I feel like the first Act of a play has finished, and with that I have felt adrift. When I first thought of putting metaphorical pen to paper it was before the last cycle of chemo and, more importantly, my appointments with the twin leaders in my treatment: my oncologist and my breast surgeon. I knew from feeling the lump that it had changed but I have tried not to have false hope for the process and appreciated I needed objective evidence to confirm the changes had happened before I could attribute them to treatment. It was agony, but I knew I just had to wait. As the side-effect symptoms diminished towards the end of the last cycle, I began to feel more like me of the old days but, again, not. I could not work; I have to be careful of where I go; I can’t do jobs around the house that expose me to infections; I need to go to bed by about 9.30pm; I don’t want to drink alcohol and a dizzy tiredness can come on me without warning; in short, I live something of a half-life. Better this than no life, but it became increasingly difficult to live with these restrictions without knowing they were working. Long ago I used to tell myself the sign of a good holiday was losing sense of what day it was, a sign that you have unwound from the pressures of life. Now I was finding myself with no notion of whether it was Monday, Friday or even Saturday, because each day presents the same choices and challenges. I know this isn’t necessarily a bad thing but, with my structures falling away, it became more of a challenge to try and live some part of my life without cancer as the primary focus. With only cancer as a focus, I became more doubting of my choices: was it safe to go outside; was it safe to cycle; should I be taking pain relief; was I becoming dependent on my pain relief? In short, my anxiety, which up until now had been managed quite well, was taking over. That isn’t a surprise, but I have persistent depressive disorder, a form of high functioning depression, and with the anxiety usually comes an increase in depressive symptoms. It has taken me many years to accept the fact that I have this diagnosis for a condition that can be treated. With that acceptance has come a steadying, and a marked decline, in symptoms. The irony is not lost on me. Now that I am prepared to accept that label I had fought against for a great deal of my adult life, as it seemed so limiting, I am now much stronger and feel more liberated. This isn’t all down to me; there is much more acceptance for mental health conditions to be admitted these days and, whilst many are still ashamed of their lack of perfection and try and hide it, more and more people who live valuable and valid lives are owning up to the fact that it’s all a bit of a struggle from time to time. The line between ‘them’, the mentally ill, and ‘us’, the mentally healthy, is blurring and with it the awful suffering that accompanies such artificial divisions of humanity. However, there still remains in some quarters a sort of received ‘British stiff upper lip’ wisdom that once you have a real problem to deal with, all this notion of ‘mental health’ fades as people stop attention seeking and get on with things properly. Those of us who know anything about PTSD realise these outdated beliefs should be filed alongside phrenology and leeches as nonsense. The things we see, and the things we do, leave impressions in our minds. I can now admit to you all that I slipped into, what my GP labels ‘suicidal ideation’. It’s okay; you can all stand down messaging me the Samaritans’ numbers, because I have climbed out of that pit but it is a dark and very familiar place where lurks the monster of my deep. For those of you who have never strayed into such dangerous territory this must, at the very least, be perplexing. Why now? Especially when all I’ve had is good news about my cancer. Do I want to stay centre stage in my own drama? Have I made much too much fuss and need to buckle down and get on? Well, no, it’s all to do with the much-used metaphor of those who deal with cancer patients: rollercoasters. The websites and handouts with cancer information for those with a diagnosis frequently use the term ‘rollercoaster’ to explain the emotional journey you travel on from diagnosis onwards. A frequently used term to describe my handling of my breast cancer diagnosis has been ‘positive’. ‘You’re so positive’ is bandied as a term of endearment, but I’ve not actually received it as such. It’s all down to definitions I suppose. I see ‘positive’ as a bland grin in the face of all odds, and I feel anything but bland. I know people don’t necessarily mean the term as I interpret it, but I suppose I’m not afraid to talk about the cancer and my fears. The utter terror of worrying I had advanced cancer before my test results will live with me for many years, if not the rest of my life. But with the knowledge that not only have I not got advanced breast cancer, but I am also I am responding extremely well to the chemotherapy, you would think relief and happiness would suffuse my being. Sadly, no. My first thoughts were ‘well if my life is being saved, what is it being saved for?’ and thus the spiral down began. My FLM (who continues her daily phone calls) is adamant I am needed at work and that there is much, including the right man, out there for me, once I get back to life. Now, that is positivity. Despite any of the hurdles of her life, she has relentlessly pedalled her ‘nonsense’ at me. I could perhaps argue that is just her style, but she isn’t alone in seeing a place for me in life, so why did I slip so far into depression I considered refusing treatment? Time for the rollercoaster analogy to be dug out and inspected. One of the difficult things to get your head round is the indiscriminate nature of cancer. Yes, the Daily Mail (other forms of cat litter tray liner are available) and its ilk eagerly publish dubious correlational research as fact to explain causes of the disease. By extension these ‘causes’ can have blame attached to them; so if you’ve spent a life eating sausages, smoking 60 a day and glugging Bulgarian Cabernet Sauvignon, then really you only have yourself to blame. However, for most people, cancer isn’t like that, or at least that’s what we know now. Cancer can come out of the blue to an apparently healthy person and kill them in a matter of weeks. Cancer can run in families but somehow miss some members, despite shared lifestyles and genes. Two people can have the same treatment at the same time, yet one goes on to develop further tumours and the other returns to a life liberated from the chemo pump. Does it help to ask why? At this point some of you will be worrying that I’m veering into talk of faith, but actually no, I won’t insult you, even if you are naïve enough to be an atheist. To attribute the inexplicable to something else (e.g. a god) is to not grasp the reality of life: none of us is getting out of here alive and to lose people we love hurts, a lot. Cancer remains a nasty stain on all our lives and a terror at which we shudder. I know this because I know how many people have gone beyond anything I could imagine to be kind to me. I have been made to feel valuable and important in ways that sends my anxious, depressed mind rocketing into overload. I have not been forgotten, belittled, or blamed. Except by the demons within. With the knowledge that the drugs seem to be working has come guilt. Guilt that I am surviving and, as such an imperfect person, what on earth can I do that warrants being saved? The guilt also managed to dig into my memories, churning them round into a pile of crimes against others and, more importantly, myself. The problem is that once you start sliding downwards, the help others can give barely touches you. The pain of being you is so extreme that others fade behind a wall and slowly, but relentlessly, the notion that to stop the pain you have to end it all moves from being an insane notion to a game plan. It’s like you are in a dark tunnel and the only escape into a pin prick of light far in the distance is an ending of the pain. I have been in that dark tunnel a number of times, and fortunately have managed to hold on for long enough for the tunnel to fade, an illusion of the pain that fades with it. But why now? Surely the physical battle to stay alive is enough; why the indulgence of this mental torment? This is where the nursing staff have been brilliant, both in hospital and at my GP surgery. They don’t belittle me for demons; they don’t question quite how low I’ve got and silly I am; they stand alongside. The nurse who did my latest blood test and gave me my flu jab just said, “Of course it’s hard; the treatment isn’t pleasant”. It was like a light went on. All those demons belittling me bleached out into nothing. But not for long. I came up and went down again, into the turmoil of self-loathing. However, the kindness of others, both professional nursing staff and friends, has just about held me together through this last arduous chemotherapy phase. I ache most of the time; I can’t taste things like I used to; I’m getting sores that do not heal; and my hair continues to fall out. It’s really tough and I can only do this because I know I’ve been given a chance. There lurks a small, logical voice at the back of my head that says, “It may not always be this easy”, and I am aware that not all cancer stories are happy ever after. But if kindness could be bottled into Happy Ever After spray, I'd hold the biggest store in the world; one strong enough to fight those awkward demons pushing me down the next run on the rollercoaster
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Wow! A mixture of emotions, openness, honesty and a hell of a roller coaster of a ride for you. I feel that by facing and acknowledging those thoughts and demons it can only be a positive way in trying to deal / understand this journey. I am sure this will help you and many others too. Each day, each thought can be different because it is the 'now' you are having to deal with. Just go with it. One moment in time .. seize each and every one of them. Love and hugs Sharon xx
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