Grief
I feel like I have been in tears for three days straight. I started on Sunday night and I can't seem to keep a lid on the feelings like I could in the last month. I even had my ultrasound scan yesterday and just wept like a child all the way through, tears sliding down my cheeks during perfectly rational discussions about lymph nodes and needles.
It is grief, pure untrammalled grief. Grief for the life of the woman whose dancing days are over. Grief for the future of my children, of those weddings that I may not get to see or be at, for those days where a mother's arms are needed and aren't there. Grief for a life not lived to the fullest, and grief for a life cut short.
And there are hints of anger around the sides, and that, I regard as a good sign. I remember an acupuncturist telling me in one of my earlier rounds with anger that the East regards anger as a force for change, as a catalyst and I get an energy from anger, a desire to prove everyone wrong. A dear relative of mine told me of a friend who was given a month to live and 10 years later is still around and that gives me hope that actually, we don't all know everything.
Yes, one of the most difficult things about a cancer diagnosis is the uncertainty. I may indeed be dead in three years, but you know what, with uncertainty comes hope, and there is a chance, a real chance with uncertainty that I might not, that I might be one of the lucky ones and pull through. Of course, it is certain that I won't live my three score and ten and that is a shame. But I may easily live another 5, 10, or even 15 years..that would be enough to see my children's wings spread enough that they leave the nest without looking back too much.
Uncertainty may be a threat, but it is also a real opportunity and I, as Minerva, as a woman who loves my life, the people around me, and my dear, lovely children, am going to do all I can to make that uncertainty something that works in my favour, not against it.
Minerva
Wednesday, October 31, 2007
Monday, October 29, 2007
Hopeless
Hopeless
I think I am grieving..or rather I hope I am for at the moment I am on the edge of a horrible precipice where every tiny glimpse over the edge makes me cry. I cry for the lives of my children, un mothered, the life of my brother, un sistered, the life of my boyfriend, un partnered, and my mother, un daughtered. I am all undone, like a Christmas tree, the day after, looking rather sad and bedraggled. I can't stop and get off this hope less treadmill. Someone talked to me of three to ten years and I have just thrown my hands in the air. I know it to be three: that as it was given three to fifteen months to come back and is back in three, the least amount of time is what is given to me.
Is that really true? In a little less than a year and a half will I be on a bed waiting to die? Will my body be dwindling with all its resources directed toward a vicious little monster called Hitler Carcinoma who will invade my outer territories? I saw my father die of cancer: I saw him become hypoxic, I saw him lose his dignity, I saw him dwindle from the man I loved so very much to a shell, a shell of a man waiting to pass on into the next world.
People talk about hope, about fighting a disease but that is nonsense. Sure, I can get up every morning but that isn't fighting. That is about maintaining normality, almost denying that it is going on, that it continues. But that tent I have erected to shelter me from the sharp rays of a non avoidable cancer is leaking around the sides. Reality is seeping in through the holes and I just don't know how to deal with it. How do I possibly deal with the fact that I am dying, and dying quickly, powerlessly and helplessly?
Other people, such as Especially Heather deal with it with enormous grace and faith and I admire that. I can't replicate it though. I truly believe that there is no life after death on this earth; that the life after death is a cycling of matter, and that the only afterlife is the memories retained in one's family's minds and that gives me no comfort at all. Memories can't hug a child, can't plaster up their knee, can't kiss them hello and goodnight and can't visit the school or talk to teachers. Memories can't love, can't hold you when you are down and cook a meal for you when you are hungry. Memories can't emanate warmth, can't laugh, can't joke, can't discuss tv programmes, can't make hot water bottles when you are cold, create hot lemon when you have a cold, can't send cards when you are away from home.
I miss my self. I miss the woman I want to be. I miss the mother that I have always wanted to be. I am missing the future: the future that I want with my children, with my family and with my life. I want it with all my being and as I sit here, tears falling down my cheeks, I just want a life with my chiildren. Is that so very much to ask? I feel so cheated; so angry that at the final fence what I want is seeping through my fingers, that whilst I am currently well I am so down about the future that I can't even enjoy the present.
In three years I will be 45. There is always one, isn't there, at every school, college or gathering of people who dies young. Who is killed in a car crash, unjustly taken from us by some disease or event. I just can't believe that that is going to be me. There are several people who were at university with me who are now in the shadow Cabinet or even in parliament and then there is me - Minerva, famous for dying first. I would so much rather just shrivel into nonentity, to be no one, to be a mediocre teacher with a mediocre little monotonous life but the promise of life, the promise of the future gives us so much.
But just as it seems that life is no longer worth going on for, something comes along. I have had so many suggestions of help and advice I am leaking. Books have been ordered from Amazon, supplements have been researched and ordered from online shops and even mediation podcasts have been enlisted. I wonder somehow if that is one of the reasons I am so fragile, if getting in touch with the 'inner you' makes the feelings that you are experiencing more 'felt' somehow. That because I am really feeling them, that that is why I am so unhappy, low and tearful at the moment. I hope so because even if I do have a little life, I really want, need to live it.
Of course, it could be because I am facing the thought of my own death in the not too distant future couldn't it?
Hoping tomorrow will be better,
Minerva
I think I am grieving..or rather I hope I am for at the moment I am on the edge of a horrible precipice where every tiny glimpse over the edge makes me cry. I cry for the lives of my children, un mothered, the life of my brother, un sistered, the life of my boyfriend, un partnered, and my mother, un daughtered. I am all undone, like a Christmas tree, the day after, looking rather sad and bedraggled. I can't stop and get off this hope less treadmill. Someone talked to me of three to ten years and I have just thrown my hands in the air. I know it to be three: that as it was given three to fifteen months to come back and is back in three, the least amount of time is what is given to me.
Is that really true? In a little less than a year and a half will I be on a bed waiting to die? Will my body be dwindling with all its resources directed toward a vicious little monster called Hitler Carcinoma who will invade my outer territories? I saw my father die of cancer: I saw him become hypoxic, I saw him lose his dignity, I saw him dwindle from the man I loved so very much to a shell, a shell of a man waiting to pass on into the next world.
People talk about hope, about fighting a disease but that is nonsense. Sure, I can get up every morning but that isn't fighting. That is about maintaining normality, almost denying that it is going on, that it continues. But that tent I have erected to shelter me from the sharp rays of a non avoidable cancer is leaking around the sides. Reality is seeping in through the holes and I just don't know how to deal with it. How do I possibly deal with the fact that I am dying, and dying quickly, powerlessly and helplessly?
Other people, such as Especially Heather deal with it with enormous grace and faith and I admire that. I can't replicate it though. I truly believe that there is no life after death on this earth; that the life after death is a cycling of matter, and that the only afterlife is the memories retained in one's family's minds and that gives me no comfort at all. Memories can't hug a child, can't plaster up their knee, can't kiss them hello and goodnight and can't visit the school or talk to teachers. Memories can't love, can't hold you when you are down and cook a meal for you when you are hungry. Memories can't emanate warmth, can't laugh, can't joke, can't discuss tv programmes, can't make hot water bottles when you are cold, create hot lemon when you have a cold, can't send cards when you are away from home.
I miss my self. I miss the woman I want to be. I miss the mother that I have always wanted to be. I am missing the future: the future that I want with my children, with my family and with my life. I want it with all my being and as I sit here, tears falling down my cheeks, I just want a life with my chiildren. Is that so very much to ask? I feel so cheated; so angry that at the final fence what I want is seeping through my fingers, that whilst I am currently well I am so down about the future that I can't even enjoy the present.
In three years I will be 45. There is always one, isn't there, at every school, college or gathering of people who dies young. Who is killed in a car crash, unjustly taken from us by some disease or event. I just can't believe that that is going to be me. There are several people who were at university with me who are now in the shadow Cabinet or even in parliament and then there is me - Minerva, famous for dying first. I would so much rather just shrivel into nonentity, to be no one, to be a mediocre teacher with a mediocre little monotonous life but the promise of life, the promise of the future gives us so much.
But just as it seems that life is no longer worth going on for, something comes along. I have had so many suggestions of help and advice I am leaking. Books have been ordered from Amazon, supplements have been researched and ordered from online shops and even mediation podcasts have been enlisted. I wonder somehow if that is one of the reasons I am so fragile, if getting in touch with the 'inner you' makes the feelings that you are experiencing more 'felt' somehow. That because I am really feeling them, that that is why I am so unhappy, low and tearful at the moment. I hope so because even if I do have a little life, I really want, need to live it.
Of course, it could be because I am facing the thought of my own death in the not too distant future couldn't it?
Hoping tomorrow will be better,
Minerva
Monday, October 22, 2007
Forgetting
Forgetting
Slowly but surely the pain is receding. I have learnt that my mind is like a giant library and I seem to have stuck the cancer box with all its attendant fears in a white plastic box right at the back, on a top shelf behind humour and getting on with life. The only time it raises its lid is when I am treated diffidently by someone when I long to shout at them that I have secondary cancer, that I only have a limited time to live and they should treat me with respect... Luckily, the rational part of my brain then springs into attention and slams the box shut before it is opened too far.
I am in Spain for half term. My children are with their father in a land far away and the sun heats my flesh. I am, for the moment, content. Tomorrow I visit the Alhambra palace, a building created so long ago and which still stands in its beauty and solidity so much longer than its creater probably envisaged. So too, I hope shall stand these petty words on this page - a marker to a woman who lived through cancer, and who will, probably die of it too. A woman who is just that, mere flesh and blood, a mother, a daughter, a sister who remembered, but who also forgot.
For forgetting, really, is the best way of fighting. I forget that I am meant to rest instead of cooking supper for my family, that I am meant to be low instead of marking books and awarding grades, that I am meant to be planning for my last days instead of planning for the future, for the holidays and the years to come. I am certainly not brave, I am scared stiff when I open the box but that terror, and it is terror, can be explored later when I can't avoid it any further.
For today, and the days to come I can live and forget.
I have even started to joke about it. Humour has nearly always been my escape valve after self pity and as self pity makes me feel awful I have decided to start joking about it. Currently I am contemplating my funeral and my gravestone. 'The only hero in the village' is possibly a little too derivative - forgive me those of you who don't know the 'Little Britain' show but all suggestions are welcome. Spike Milligan had it really when he orchestrated 'I told them I was ill' on his, but I am sure I will come up with something.
I haven't been able to tell new people this time. It hurts too much and strangely seems almost irrelevant to the life we are living. After all, as we used to say in the playground, we start dying the moment we emerge from the womb. We are all dying and it is only that I know that I don't have my three score years and ten on this earth that I have become special. For all we know, any one of us might be in that position: it is, in my case, only that the certainty is there now.
I see too that someone in Wales has now published her story of fighting breast cancer and would you believe it, but I am jealous. That is always something I wanted to do with this blog but I have been beaten to it because my story never seems to have an ending. I console myself, (warning: black humour ahead) that books sell so much better once the author has died. I have to say though, that the ultimate accolade to all this blog has done, has been the emails that flow into my inbox talking of loneliness, of fear and how these writings have helped those to understand what their loved ones are going through and for others fighting this awful disease to know that they are not alone; that the feelings that they are experiencing are not exceptional, that there are others upon this earth that truly understand the pain, the terror and the fear.
But that terror and pain is for later when I cannot avoid them any more.
Today I can forget and today I can laugh. Truly, I am blessed.
Minerva
Slowly but surely the pain is receding. I have learnt that my mind is like a giant library and I seem to have stuck the cancer box with all its attendant fears in a white plastic box right at the back, on a top shelf behind humour and getting on with life. The only time it raises its lid is when I am treated diffidently by someone when I long to shout at them that I have secondary cancer, that I only have a limited time to live and they should treat me with respect... Luckily, the rational part of my brain then springs into attention and slams the box shut before it is opened too far.
I am in Spain for half term. My children are with their father in a land far away and the sun heats my flesh. I am, for the moment, content. Tomorrow I visit the Alhambra palace, a building created so long ago and which still stands in its beauty and solidity so much longer than its creater probably envisaged. So too, I hope shall stand these petty words on this page - a marker to a woman who lived through cancer, and who will, probably die of it too. A woman who is just that, mere flesh and blood, a mother, a daughter, a sister who remembered, but who also forgot.
For forgetting, really, is the best way of fighting. I forget that I am meant to rest instead of cooking supper for my family, that I am meant to be low instead of marking books and awarding grades, that I am meant to be planning for my last days instead of planning for the future, for the holidays and the years to come. I am certainly not brave, I am scared stiff when I open the box but that terror, and it is terror, can be explored later when I can't avoid it any further.
For today, and the days to come I can live and forget.
I have even started to joke about it. Humour has nearly always been my escape valve after self pity and as self pity makes me feel awful I have decided to start joking about it. Currently I am contemplating my funeral and my gravestone. 'The only hero in the village' is possibly a little too derivative - forgive me those of you who don't know the 'Little Britain' show but all suggestions are welcome. Spike Milligan had it really when he orchestrated 'I told them I was ill' on his, but I am sure I will come up with something.
I haven't been able to tell new people this time. It hurts too much and strangely seems almost irrelevant to the life we are living. After all, as we used to say in the playground, we start dying the moment we emerge from the womb. We are all dying and it is only that I know that I don't have my three score years and ten on this earth that I have become special. For all we know, any one of us might be in that position: it is, in my case, only that the certainty is there now.
I see too that someone in Wales has now published her story of fighting breast cancer and would you believe it, but I am jealous. That is always something I wanted to do with this blog but I have been beaten to it because my story never seems to have an ending. I console myself, (warning: black humour ahead) that books sell so much better once the author has died. I have to say though, that the ultimate accolade to all this blog has done, has been the emails that flow into my inbox talking of loneliness, of fear and how these writings have helped those to understand what their loved ones are going through and for others fighting this awful disease to know that they are not alone; that the feelings that they are experiencing are not exceptional, that there are others upon this earth that truly understand the pain, the terror and the fear.
But that terror and pain is for later when I cannot avoid them any more.
Today I can forget and today I can laugh. Truly, I am blessed.
Minerva
Tuesday, October 16, 2007
Scans
Scans
The postal strike in England has now resolved and suddenly my door mat is awash with letters from hospitals. The first appointment is an ultrasound scan to try and find the cells under my arm, and if they can see them, to take some to check the oestrogen receptor status. Why is this so important? Oestrogen receptive tumours tend to be less aggressive (usually!), and they do what they say on the tin, they are fed by oestrogen which means that if you strip the body of the hormone, the tumour itself should shrivel up. My first tumour, (what an expert I have become!) was oestrogen positive but the second recurrence in the lymph nodes below my shoulder appeared to have mutated to being oestrogen non receptive. The doctors did appear sceptical about that result, hence the need to check again.
I do hope it is oestrogen receptive because that means that the drug I am taking at the moment, Arimidex, is designed to strip my body of its oestrogen and it is, so far, utterly symptom free. Of course, it is putting this 41 year old's fertility and femininity to bed as well and I am getting the symptoms of menopause, but believe me, compared with chemotherapy, that is a doddle, a mere bagatelle, a walk in the park.
If, however, they do manage to get cells out, get to test them and they turn out to be oestrogen negative then that is bad news. Bad news because that means that the only way forward is chemotherapy and I feel, having had two sets in the last 18 months that I have had quite enough of THAT thank you. I am suddenly reminded of Monty Python and the Life of Brian when the men are asked whether they are 'free or crucifixion?' in the same tone of voice. Can you imagine? ''Hormone treatment or chemotherapy?''
The appointment after that is at yet another hospital for an appointment with a geneticist to find out if there is a genetic component to my cancer. Menopause, chemotherapy, radiation, surgery all pale into insignificance compared with the horror that I may be passing on to my beautiful daughters. The idea that Eldest, twin 1 and twin 2 may be tainted with their own Damoclean sword from puberty onwards just doesn't bear thinking about. I will have no idea what to do if there is - does one tell and create shadows in your children's minds or does one say nothing beyond it is worth having a mammogram early... I will cross that bridge when I come to it, I think.
The third, in December is the PET scan to check how the cancer is advancing or stagnating. I pray for the latter. I know that the course now is inevitable but there is huge uncertainty over the time scale involved. We all know people who have died within three months of diagnosis as we have heard or talked to people who have lived for years. There is nothing more scary though than the well meaning who say, for example, 'I knew someone who had liver mets and lived for 5 years..'' because they are thinking they are helping whilst my brain is running around with its arms in the air screaming '5 YEARS - that's ALL?? I know they are trying to help and I am so grateful for the hope but still, 5 YEARS?
But it is hope that is keeping me living. It is hope that gets me out of bed in the morning, that slips into my handbag as I leave the house, that sleeps in my classroom pencil case and snakes its way around my shoulders like a scarf. Hope, because it is hope that is the ultimate medicine, the ultimate new drug, and the ultimate source of happiness.
In hope,
Minerva
The postal strike in England has now resolved and suddenly my door mat is awash with letters from hospitals. The first appointment is an ultrasound scan to try and find the cells under my arm, and if they can see them, to take some to check the oestrogen receptor status. Why is this so important? Oestrogen receptive tumours tend to be less aggressive (usually!), and they do what they say on the tin, they are fed by oestrogen which means that if you strip the body of the hormone, the tumour itself should shrivel up. My first tumour, (what an expert I have become!) was oestrogen positive but the second recurrence in the lymph nodes below my shoulder appeared to have mutated to being oestrogen non receptive. The doctors did appear sceptical about that result, hence the need to check again.
I do hope it is oestrogen receptive because that means that the drug I am taking at the moment, Arimidex, is designed to strip my body of its oestrogen and it is, so far, utterly symptom free. Of course, it is putting this 41 year old's fertility and femininity to bed as well and I am getting the symptoms of menopause, but believe me, compared with chemotherapy, that is a doddle, a mere bagatelle, a walk in the park.
If, however, they do manage to get cells out, get to test them and they turn out to be oestrogen negative then that is bad news. Bad news because that means that the only way forward is chemotherapy and I feel, having had two sets in the last 18 months that I have had quite enough of THAT thank you. I am suddenly reminded of Monty Python and the Life of Brian when the men are asked whether they are 'free or crucifixion?' in the same tone of voice. Can you imagine? ''Hormone treatment or chemotherapy?''
The appointment after that is at yet another hospital for an appointment with a geneticist to find out if there is a genetic component to my cancer. Menopause, chemotherapy, radiation, surgery all pale into insignificance compared with the horror that I may be passing on to my beautiful daughters. The idea that Eldest, twin 1 and twin 2 may be tainted with their own Damoclean sword from puberty onwards just doesn't bear thinking about. I will have no idea what to do if there is - does one tell and create shadows in your children's minds or does one say nothing beyond it is worth having a mammogram early... I will cross that bridge when I come to it, I think.
The third, in December is the PET scan to check how the cancer is advancing or stagnating. I pray for the latter. I know that the course now is inevitable but there is huge uncertainty over the time scale involved. We all know people who have died within three months of diagnosis as we have heard or talked to people who have lived for years. There is nothing more scary though than the well meaning who say, for example, 'I knew someone who had liver mets and lived for 5 years..'' because they are thinking they are helping whilst my brain is running around with its arms in the air screaming '5 YEARS - that's ALL?? I know they are trying to help and I am so grateful for the hope but still, 5 YEARS?
But it is hope that is keeping me living. It is hope that gets me out of bed in the morning, that slips into my handbag as I leave the house, that sleeps in my classroom pencil case and snakes its way around my shoulders like a scarf. Hope, because it is hope that is the ultimate medicine, the ultimate new drug, and the ultimate source of happiness.
In hope,
Minerva
Thursday, October 11, 2007
Shock
Shock
I am in a room with a monster who sits in the corner. A monster which is black, silent and deadly. A monster whose gaze digs into my back when I turn away, a monster whose presence I can forget for moments at a time, who retreats when I am teaching, sleeping or doing something which requires all my concentration. As soon as that activity stops, it starts again, staring into my heart and my mind, its tendrils snaking their way into my deepest fears and worries.
I have been unable to cry. I just feel utterly numb, a little stressed which expresses itself in a shorter temper. I can't sleep properly and haven't been able to since the news took root on Friday. It isn't insomnia as such in that I don't lie awake for ages, no, it is tossing and turning constantly at night and I wake up tired. I took a sleeping pill the night before last and the bliss of just falling into oblivion. It was so addictive I have been deliberately careful not to take any more. I woke up yesterday after taking it with just another layer of resilience but after another night of restless sleep, I find I am stripped of it today.
Everyone I have told personally I have watched as their eyes fill with tears, as the realisation hits them that they are talking to the 'walking dead', as they try desperately to hide their shock.. and I don't know what to say. I just want to apologise, and do for hurting them. I feel so awful for putting them in such an awkward position and like them, have no idea what to say, how to alleviate their pain. I just want to protect them, find myself trying to 'cheer' them up, talk about hope, new treatments, the inevitable Jane Tomlinson comment, and then move away not believing a word of it into the arms of the monster again.
I haven't cried yet, I mean, really cried and bawled my eyes out. I feel it welling sometimes: when I talk about my children, or when I think about the future without my presence in it, but I don't let it go. I can't, for some strange reason as if, by letting go, it might not stop. I don't even feel my customary rage - I just feel numb, dead inside. All I think about is the day to day clutter of ordinary life: my planning for the following day; what my daughter and I are going to eat that night; whether I have sent the letters; marked my books. Is it possible to have cancer fatigue?
I have even shied away from telling people or calling them. I so appreciate the calls that I have had, the texts and the emails but just don't know what to say. I can't bear hearing people so upset knowing that I, indirectly, am the cause of so much pain. And what is more, to hear phrases like 'have hope' and 'be positive' are just unbearable.
Believe me, I am not being churlish or rude. So many of your comments on my blog, to me in person and on the phone or by email have been incredibly helpful, helpful because it shows me that you care, that all of you who read this, CQ who has sent countless people over here, all those people thinking about me really really care... but I can't deal with the words. Every day I am constantly asked how I am and I reply, as needs must, fine and I see them wince as do I. I am not, but daily life can't deal with complexity; with a disease that is killing my body but which currently has no outward show at all!
As I say, my aim in talking about my emotions here is not to be churlish or rude: I would die rather than do that to you.. (how ironic was THAT statement?) but I have always promised myself that this blog was going to be a completely honest tale, a tale of the emotional journey that is cancer, and so even here it must continue to be.
What is important really is not what you say, but that you say it. That every single one of you both in cyberspace and in real life have taken the time to write to me, comment on my blog, email me, text me, hug me, hold me, and phone me to tell me that you care. It is that outpouring which is keeping me going, that display that keeps me getting up every morning and that keeps that awful black monster with the deadly tendrils at bay.
For the moment I cannot look that monster in the face. For that I need time, I need to get used to the idea that I really have no control over this disease. That for the third time in less than two years, I am fighting something that keeps returning. You talk of statistics and I know that they are a mean, a median that they stretch from the least amount of time to the greatest. The fact is, and I am, slowly, coming to terms with this, the fact is that my cancer keeps coming back in the least amount of time. My doctor, when I had my recurrence, said that the greatest indication of what is to happen in the future is found in the past. They gave me a 97% chance of it coming back in 3 to 15 months. It is back in 3.
That monster scares the hell out of me, but I am facing it honestly. I need to know exactly what it is I am facing before I fight it.
Minerva
I am in a room with a monster who sits in the corner. A monster which is black, silent and deadly. A monster whose gaze digs into my back when I turn away, a monster whose presence I can forget for moments at a time, who retreats when I am teaching, sleeping or doing something which requires all my concentration. As soon as that activity stops, it starts again, staring into my heart and my mind, its tendrils snaking their way into my deepest fears and worries.
I have been unable to cry. I just feel utterly numb, a little stressed which expresses itself in a shorter temper. I can't sleep properly and haven't been able to since the news took root on Friday. It isn't insomnia as such in that I don't lie awake for ages, no, it is tossing and turning constantly at night and I wake up tired. I took a sleeping pill the night before last and the bliss of just falling into oblivion. It was so addictive I have been deliberately careful not to take any more. I woke up yesterday after taking it with just another layer of resilience but after another night of restless sleep, I find I am stripped of it today.
Everyone I have told personally I have watched as their eyes fill with tears, as the realisation hits them that they are talking to the 'walking dead', as they try desperately to hide their shock.. and I don't know what to say. I just want to apologise, and do for hurting them. I feel so awful for putting them in such an awkward position and like them, have no idea what to say, how to alleviate their pain. I just want to protect them, find myself trying to 'cheer' them up, talk about hope, new treatments, the inevitable Jane Tomlinson comment, and then move away not believing a word of it into the arms of the monster again.
I haven't cried yet, I mean, really cried and bawled my eyes out. I feel it welling sometimes: when I talk about my children, or when I think about the future without my presence in it, but I don't let it go. I can't, for some strange reason as if, by letting go, it might not stop. I don't even feel my customary rage - I just feel numb, dead inside. All I think about is the day to day clutter of ordinary life: my planning for the following day; what my daughter and I are going to eat that night; whether I have sent the letters; marked my books. Is it possible to have cancer fatigue?
I have even shied away from telling people or calling them. I so appreciate the calls that I have had, the texts and the emails but just don't know what to say. I can't bear hearing people so upset knowing that I, indirectly, am the cause of so much pain. And what is more, to hear phrases like 'have hope' and 'be positive' are just unbearable.
Believe me, I am not being churlish or rude. So many of your comments on my blog, to me in person and on the phone or by email have been incredibly helpful, helpful because it shows me that you care, that all of you who read this, CQ who has sent countless people over here, all those people thinking about me really really care... but I can't deal with the words. Every day I am constantly asked how I am and I reply, as needs must, fine and I see them wince as do I. I am not, but daily life can't deal with complexity; with a disease that is killing my body but which currently has no outward show at all!
As I say, my aim in talking about my emotions here is not to be churlish or rude: I would die rather than do that to you.. (how ironic was THAT statement?) but I have always promised myself that this blog was going to be a completely honest tale, a tale of the emotional journey that is cancer, and so even here it must continue to be.
What is important really is not what you say, but that you say it. That every single one of you both in cyberspace and in real life have taken the time to write to me, comment on my blog, email me, text me, hug me, hold me, and phone me to tell me that you care. It is that outpouring which is keeping me going, that display that keeps me getting up every morning and that keeps that awful black monster with the deadly tendrils at bay.
For the moment I cannot look that monster in the face. For that I need time, I need to get used to the idea that I really have no control over this disease. That for the third time in less than two years, I am fighting something that keeps returning. You talk of statistics and I know that they are a mean, a median that they stretch from the least amount of time to the greatest. The fact is, and I am, slowly, coming to terms with this, the fact is that my cancer keeps coming back in the least amount of time. My doctor, when I had my recurrence, said that the greatest indication of what is to happen in the future is found in the past. They gave me a 97% chance of it coming back in 3 to 15 months. It is back in 3.
That monster scares the hell out of me, but I am facing it honestly. I need to know exactly what it is I am facing before I fight it.
Minerva
Monday, October 08, 2007
I am so scared..
I am so scared.
I am afraid, scared, and have that awful fear at the bottom of my stomach. All entirely my own fault, I may add.
I have been looking up life expectancies on the web and I really really don't like what I see. 10 per cent chance of making 5 years, 30 per cent chance of making three? That is so close, so near..and every time I think about it tears gather in my eyes.
I am not ready for this, not ready to leave my family, my children, my happiness and my job. I haven't finished what I was born to do, and I need the time..
Please, don't take me away, please don't do this, please...
I am so very very frightened.
Minerva
I am afraid, scared, and have that awful fear at the bottom of my stomach. All entirely my own fault, I may add.
I have been looking up life expectancies on the web and I really really don't like what I see. 10 per cent chance of making 5 years, 30 per cent chance of making three? That is so close, so near..and every time I think about it tears gather in my eyes.
I am not ready for this, not ready to leave my family, my children, my happiness and my job. I haven't finished what I was born to do, and I need the time..
Please, don't take me away, please don't do this, please...
I am so very very frightened.
Minerva
Saturday, October 06, 2007
Answers
I have answers
So I have my answers and an apology. Three times, actually he apologised and I really liked him for it.
Basically, it is very likely that I have secondary breast cancer which has metastasised (spread) to the nodes in the axilla or underarma and the nodes around the thymus gland in the middle of my chest. It is very earlyl still: these cells are less tumours than collections of cells that have been picked up by the PET scan.
The juggernaut is coming and I can see it from a long way away. With normal scans I would probably have been aware of secondary cancer in a year's time when those collections of cells became tumour like. Is early screening a good thing or a bad thing? I can adjust to the idea now, but at the same time am aware of the curse that hangs over my head. I honestly don't know the answer to that question yet.
I will have an ultrasound in the next couple of weeks and if they can aspirate some cells with a needle, then they will test to see if they are hormone positive or not which will help determine treatment... but I can't set too much store by that, as it is so early that they may not be able to distinguish them on a scan yet.
I have been put on Arimidex which is another hormone blocker as well as my injection prostrap for another couple of months when I will be monitored with another PET scan. I cannot reiterate how much this man understood what I am going through. When I looked impatient at the idea of an ultrasound and asked how much use it really was, he completely empathised with the fact that I just want to get on with my life, that I want to forget the cancer morass that my feet are in. But the ultrasound could be important so I shall break my cancer fast for that...
And then a long, drunken lunch in the October sunshine on the banks of the River Thames with my beloved brother and my best friend. I cannot tell you how strange this is, how I feel like it is all happening to someone else, that we talk of life expectancies, plans after I have gone and ways to make the most of the time I have left and I almost want to look round to see whom we are talking of. I just cannot believe it, and then sometimes, occasionally, a dart flies through the defences I have raised and strikes home. We were talking of life expectancy yesterday and for some reason I have thought 5 to 15 years: my brother and my best friend said 3 to 10. That hurt. That really hurt and I can't particularly explain why. I mean, it isn't like there is much difference is there?
I have also had my first scan to judge the density of my bones. Arimidex can be shown to strip the bones of calcium so it needs to be monitored. Strange for the first time I didn't ask about the potential toxicity of the scans as that would be something that would show up in 30 years time and I won't be alive then.
How wierd a thought is that? I live normal life and then the thoughts of mortality, of missing out, of not being here, indeed of not being are woven in with the normal distractions. I won't be here, I won't see my children's children, my mother will probably go after me, and I will be the person of a generation who dies early, the one who is always talked of in hushed voices.
How strange. I feel so bewildered, so angry and lost. No one else can possibly understand. I am being told what to do by everyone I meet, be positive, plan this, plan that, share your time, stop being a recluse, stop hiding, and all I want to do is get my head down, get back to work and be treated as the Minerva of old...
Minerva
So I have my answers and an apology. Three times, actually he apologised and I really liked him for it.
Basically, it is very likely that I have secondary breast cancer which has metastasised (spread) to the nodes in the axilla or underarma and the nodes around the thymus gland in the middle of my chest. It is very earlyl still: these cells are less tumours than collections of cells that have been picked up by the PET scan.
The juggernaut is coming and I can see it from a long way away. With normal scans I would probably have been aware of secondary cancer in a year's time when those collections of cells became tumour like. Is early screening a good thing or a bad thing? I can adjust to the idea now, but at the same time am aware of the curse that hangs over my head. I honestly don't know the answer to that question yet.
I will have an ultrasound in the next couple of weeks and if they can aspirate some cells with a needle, then they will test to see if they are hormone positive or not which will help determine treatment... but I can't set too much store by that, as it is so early that they may not be able to distinguish them on a scan yet.
I have been put on Arimidex which is another hormone blocker as well as my injection prostrap for another couple of months when I will be monitored with another PET scan. I cannot reiterate how much this man understood what I am going through. When I looked impatient at the idea of an ultrasound and asked how much use it really was, he completely empathised with the fact that I just want to get on with my life, that I want to forget the cancer morass that my feet are in. But the ultrasound could be important so I shall break my cancer fast for that...
And then a long, drunken lunch in the October sunshine on the banks of the River Thames with my beloved brother and my best friend. I cannot tell you how strange this is, how I feel like it is all happening to someone else, that we talk of life expectancies, plans after I have gone and ways to make the most of the time I have left and I almost want to look round to see whom we are talking of. I just cannot believe it, and then sometimes, occasionally, a dart flies through the defences I have raised and strikes home. We were talking of life expectancy yesterday and for some reason I have thought 5 to 15 years: my brother and my best friend said 3 to 10. That hurt. That really hurt and I can't particularly explain why. I mean, it isn't like there is much difference is there?
I have also had my first scan to judge the density of my bones. Arimidex can be shown to strip the bones of calcium so it needs to be monitored. Strange for the first time I didn't ask about the potential toxicity of the scans as that would be something that would show up in 30 years time and I won't be alive then.
How wierd a thought is that? I live normal life and then the thoughts of mortality, of missing out, of not being here, indeed of not being are woven in with the normal distractions. I won't be here, I won't see my children's children, my mother will probably go after me, and I will be the person of a generation who dies early, the one who is always talked of in hushed voices.
How strange. I feel so bewildered, so angry and lost. No one else can possibly understand. I am being told what to do by everyone I meet, be positive, plan this, plan that, share your time, stop being a recluse, stop hiding, and all I want to do is get my head down, get back to work and be treated as the Minerva of old...
Minerva
Wednesday, October 03, 2007
It isn't good news...
It isn't good news.
I have secondary cancer - let me just repeat that, secondary cancer. Cancer that has metastasised beyond the breast and the immediate environs, the suburbs, as it were. Cancer that is moving to the country, to be precise, my right armpit and possibly my thymus gland.
I have to say typing this is already an out of body experience. I see my hands typing away and the phrase 'secondary cancer' repeats itself over and over again in my mind. How very strange...
Secondary, se-con-dar-ry....hmmmm It is currently in my right armpit, the opposite side to the original cancer, and may, I repeat, may be in my thymus as well. I say 'may' because the consultant couldn't be there; no, he had to catch a train and left just before my appointment. Don't these doctors get it? I have secondary metastatic cancer and the only person who can help me is the consultant and he leaves, leaving me with a registrar who probably hasn't seen more than three or four scans in her professional life and can't possibly answer any of my questions.
I want to know so much. I want to know if I should go on chemo to stop it moving to one of my major organs; my prognosis, the next steps, how we confim it is indeed cancer..but no. Certainty is not for me. No, for me is the uncertainty of diagnosis and further scans. The only definite action is that the consultant in his rush has given me Arimidex to block out even more hormones. This is to stop it travelling even further I think.
And I also think, how does one stop a flood? This is the first step to death, the realisation that my cancer is no longer curable, but is now a chronic companion by my side. Is this how it is going to be? The slow, relentless onslaught of a disease which won't stop before it holds me deep within its hands?
I do realise though that I want to live. I want to work, I want to have fun with my children, to laugh and to guide young men down their road to adulthood.
I want my life: it may have to be with a constant companion by my side but that isn't going to stop me...
Minerva
I have secondary cancer - let me just repeat that, secondary cancer. Cancer that has metastasised beyond the breast and the immediate environs, the suburbs, as it were. Cancer that is moving to the country, to be precise, my right armpit and possibly my thymus gland.
I have to say typing this is already an out of body experience. I see my hands typing away and the phrase 'secondary cancer' repeats itself over and over again in my mind. How very strange...
Secondary, se-con-dar-ry....hmmmm It is currently in my right armpit, the opposite side to the original cancer, and may, I repeat, may be in my thymus as well. I say 'may' because the consultant couldn't be there; no, he had to catch a train and left just before my appointment. Don't these doctors get it? I have secondary metastatic cancer and the only person who can help me is the consultant and he leaves, leaving me with a registrar who probably hasn't seen more than three or four scans in her professional life and can't possibly answer any of my questions.
I want to know so much. I want to know if I should go on chemo to stop it moving to one of my major organs; my prognosis, the next steps, how we confim it is indeed cancer..but no. Certainty is not for me. No, for me is the uncertainty of diagnosis and further scans. The only definite action is that the consultant in his rush has given me Arimidex to block out even more hormones. This is to stop it travelling even further I think.
And I also think, how does one stop a flood? This is the first step to death, the realisation that my cancer is no longer curable, but is now a chronic companion by my side. Is this how it is going to be? The slow, relentless onslaught of a disease which won't stop before it holds me deep within its hands?
I do realise though that I want to live. I want to work, I want to have fun with my children, to laugh and to guide young men down their road to adulthood.
I want my life: it may have to be with a constant companion by my side but that isn't going to stop me...
Minerva
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