I don't understand myself at the moment. On the one hand I am being positive and forward looking. I have started reading books that I have always wanted to read and reviewing them on my new blog. I have made an appointment at an alternative health centre that offers treatments for Breast cancer and I have that in 10 days time. I have gone out for lunch today and made a provisional date to go into school and see my friends and students.
Best news of all. I had a scan today and the cancer lymph node has halved in size. Yup, that is shrunk by 50% from 2 cm to .97. So tell me, tell me please,
Why can't I stop crying? Because I can't. I have cried tonight to the best friend, to two mates, to my brother, to my work colleague and it happens whenever I talk about what I am going through. What on earth is wrong? They all ask me and I just don't know. For once, my articulacy is completely dumb. I am unhappy, I am incredibly angry, I want my life back. I don't want this existence, this disease and I am fed up of feeling 'unlucky'. I can't even feel terribly pleased about the shrinkage over and above the Docetaxol is working because, if you remember, last time, the tumour shrank by half during the first half of treatment and grew back to its original size by the end.
But, at least it is currently working, and that has to make all this worth going through, doesn't it?
Doesn't it?
And, least we forget, tomorrow is treatment number 3. 3 down, 3 to go.
Happy Chemo Day Minerva.
Wednesday, February 28, 2007
Sunday, February 25, 2007
Saturday, February 24, 2007
The Myths
Some of the nonsense that people tell you when you have cancer is unbelievably patronising. 'Stay positive' - Uh huh...Yeah... So..let's see..I am fighting a major illness with treatment that currently makes me feel so much worse than the disease itself. I have lost my hair, I have put on weight due to steroids which have also altered my sleep patterns and my moods so that I am alternately high as a kite and on the internet until 5am or lying in bed until 3pm feeling sorry for myself. I have hands which feel burnt from the chemo, my face is blotchy and my nails hurt from the chemo attacking the nail beds. And what is more, I am not allowed to be miserable or feel the least bit sorry for myself because then I will be letting the cancer win?!
No, I don't think so, I really really don't think so.. I think I would be mad if I was resolutely cheerful in the face of mortality and dis-ability. Please don't make me feel guilty for being down or low. I actually think I am entitled to be, don't you? Please, if you really want to make me feel better, which I know you do as a friend of mine, then listen... Listen to my sadness, my fears and let me talk. That is what helps me most....
Just like fighting it. I have puzzled this over in my mind for the last week or so. What is fighting it? Is it being relentlessly positive in the face of almost certain recurrent illness? Is it forging a path through in denial with blinkers on and not looking cancer, and indeed, mortality in the eyes?
I don't know. I really don't know the answer to this question. I just know that for me, and I emphasise the for me part as we all react in different ways, even on the worst days after chemo I have still got up every morning, I have brushed my teeth and I have got dressed. I may have only got dressed to sit in front of the computer for the day or to lie on the sofa with fatigue but I have still clung to the routines of normality. Is that fighting? It doesn't feel like it; I actually feel that I am skiving my 'real job', that I should be working if I can get dressed, not skulking around my house. But maybe, just maybe, that is where the real fight takes place. That the clinging to normality and its routines are the weapons of this particular battle?
Maybe normality and hence an ordinary life is the aim of the greatest war of all?
Minerva
No, I don't think so, I really really don't think so.. I think I would be mad if I was resolutely cheerful in the face of mortality and dis-ability. Please don't make me feel guilty for being down or low. I actually think I am entitled to be, don't you? Please, if you really want to make me feel better, which I know you do as a friend of mine, then listen... Listen to my sadness, my fears and let me talk. That is what helps me most....
Just like fighting it. I have puzzled this over in my mind for the last week or so. What is fighting it? Is it being relentlessly positive in the face of almost certain recurrent illness? Is it forging a path through in denial with blinkers on and not looking cancer, and indeed, mortality in the eyes?
I don't know. I really don't know the answer to this question. I just know that for me, and I emphasise the for me part as we all react in different ways, even on the worst days after chemo I have still got up every morning, I have brushed my teeth and I have got dressed. I may have only got dressed to sit in front of the computer for the day or to lie on the sofa with fatigue but I have still clung to the routines of normality. Is that fighting? It doesn't feel like it; I actually feel that I am skiving my 'real job', that I should be working if I can get dressed, not skulking around my house. But maybe, just maybe, that is where the real fight takes place. That the clinging to normality and its routines are the weapons of this particular battle?
Maybe normality and hence an ordinary life is the aim of the greatest war of all?
Minerva
Wednesday, February 21, 2007
Fulcrum
In the middle, I sit on the fulcrum of the chemotherapy see saw. 10 days since the last dose of toxin in my veins and a mere 10 days to go until the next batch. It is tougher every time; the tiredness seeps into my muscles and my bones and whilst I find it hard to sleep at night, I can't get up the following morning and I have no energy for anything bar sitting, reading and writing.
I am trying to come up with some ideas to keep myself busy and one of those is here.. I have so many books, so many of which I have longed to read for ages, so I thought that combining reading and writing in one place was a good idea... Do be gentle though; my self esteem is incredibly fragile still. It is hard feeling good about yourself when one looks like a stubbly egg head!
Still, back to the balance and fulcrum. The next treatment means that I will be half way through; three behind me and three in front. The see saw will swing and turn and my way down to the ground of my normal life will be clear ahead...
10 days to build up the resistance, to collect the troops and marshall the forces for the enemy. 10 days to the next battle....
Minerva
I am trying to come up with some ideas to keep myself busy and one of those is here.. I have so many books, so many of which I have longed to read for ages, so I thought that combining reading and writing in one place was a good idea... Do be gentle though; my self esteem is incredibly fragile still. It is hard feeling good about yourself when one looks like a stubbly egg head!
Still, back to the balance and fulcrum. The next treatment means that I will be half way through; three behind me and three in front. The see saw will swing and turn and my way down to the ground of my normal life will be clear ahead...
10 days to build up the resistance, to collect the troops and marshall the forces for the enemy. 10 days to the next battle....
Minerva
Friday, February 16, 2007
Nearly there...
It's been a long week. A long week for me, but a longer week for those around me, whom I know I have driven crazy. My body seems to have become an enemy these days, an opponent whom I need to outsmart at every turn and plan for rather than someone who is on the same side. I keep getting up in the morning 'thinking' I can do things and then, by midday retiring into grumpy melancholy because I clearly can't and taking it out on those around me...
The frustration is legion, emotionally, physically and mentally. Physically, the side effects aren't that bad; my knees ache terribly when bent, my nails are terribly sensitive and can't do anything useful but it is the fatigue and tiredness which is most debilitating. I feel when I get up, that I do have some energy in the tank and slowly, quietly, it runs freely out by lunchtime and when I say I don't have anything left, I don't have anything left and the least little physical or mental task makes me weep with frustration, anger and pity.
So why am I going on about this? It isn't, surprisingly to those who know me, (*grin*) , a cry for attention but I want you, you on the other side of this fence to understand what it is like if you have someone going through this and where their anger and frustration comes from. We desperately want to carry on as before, we don't want help, we don't want to lose control of our houses and our families but this treatment makes you do just that... I just want someone, whilst I am going through this, to take over my life, to run it, to provide what I need and just leave me to sleeping. I don't want to make decisions, I don't want to run the household, I just want to sleep, to sleep and perhaps to wake up one morning where I don't feel that I have been run over, that I don't feel a misfit in an alien body and where, I hope, I can catch a glimpse of myself coming down the stairs in the mirror and feel pleased to be that person.
Having said all that, I am on the way up. The nadir of this week is now over and I can't believe that I only have ten more days to go to the next treatment. Ten days which I need to rebuild my reserves, and to deposit the energy stores in the bank that I will be withdrawing next cycle.
The lack of energy I have is always compounded by the energy that others have, and Jo brought to my attention the Moon Walk that Jenny is doing for Breast Cancer on May 19th. Her online donation site is here if you would like to offer your support...
And finally, WOMP has been nominated again for the Best of Blogs Awards. What a huge compliment that is... Thank you
Minerva
The frustration is legion, emotionally, physically and mentally. Physically, the side effects aren't that bad; my knees ache terribly when bent, my nails are terribly sensitive and can't do anything useful but it is the fatigue and tiredness which is most debilitating. I feel when I get up, that I do have some energy in the tank and slowly, quietly, it runs freely out by lunchtime and when I say I don't have anything left, I don't have anything left and the least little physical or mental task makes me weep with frustration, anger and pity.
So why am I going on about this? It isn't, surprisingly to those who know me, (*grin*) , a cry for attention but I want you, you on the other side of this fence to understand what it is like if you have someone going through this and where their anger and frustration comes from. We desperately want to carry on as before, we don't want help, we don't want to lose control of our houses and our families but this treatment makes you do just that... I just want someone, whilst I am going through this, to take over my life, to run it, to provide what I need and just leave me to sleeping. I don't want to make decisions, I don't want to run the household, I just want to sleep, to sleep and perhaps to wake up one morning where I don't feel that I have been run over, that I don't feel a misfit in an alien body and where, I hope, I can catch a glimpse of myself coming down the stairs in the mirror and feel pleased to be that person.
Having said all that, I am on the way up. The nadir of this week is now over and I can't believe that I only have ten more days to go to the next treatment. Ten days which I need to rebuild my reserves, and to deposit the energy stores in the bank that I will be withdrawing next cycle.
The lack of energy I have is always compounded by the energy that others have, and Jo brought to my attention the Moon Walk that Jenny is doing for Breast Cancer on May 19th. Her online donation site is here if you would like to offer your support...
And finally, WOMP has been nominated again for the Best of Blogs Awards. What a huge compliment that is... Thank you
Minerva
Wednesday, February 14, 2007
Finding it hard..
I am really finding this hard. My girls returned on Friday, faces lit up with excitement at the thought of half term holiday and I can't do anything. I can't sleep because of the steroids until four or five in the morning and when I get up around ten, I am like a zombie moving around the house. I feel completely and utterly inadequate; I can't cook, clean, wash, get in their favourite foods, play games with them or have the energy for anything beyond lying around. And yet, when I do get into bed, my bones and joints ache so badly from the chemo that I can't sleep again. I am so frustrated, so angry and so tearful.
The tiredness that their school has engendered has made my daughters weepy as well and everytime they cry, tears fall from my eyes too onto their heads. The grey clouds outside mean that the lights have to stay on inside the house and the constant rain falling onto the windows is like a physical reminder of the monotony of time...
This is difficult. I am so low, so tired, so drained. I do summon up the most basic resources from my body to get dressed every day, go downstairs, talk to the girls before collapsing in bed again for the afternoon or going to the hospital for blood tests. Certainly, my blood cell counts are low. Chemotherapy doesn't just attack cancer cells but all rapidly reproducing cells in the body including hair cells and blood marrow cells. This means that as well as the hair, my white blood cell count is down which means that my barrier to infection is non-existent.
This, my dears, is not a life. This is a drudge, a waste of energy. I am not a wonderful, caring, lovely, all encompassing mother with my arms open wide for my darling babies, I am a ghost, a bald spectre who is barely moving around the rooms, whose path barely disturbs the flow of air.. I am not influencing my surroundings at all, not giving anything back to my dear lovely children and I feel the dearth, feel the lack of energy and power.. What lesson am I imparting? How am I teaching them what a parent should be?
My family though have been fantastic. My mother has been round every day and taken the girls out for various outings and my brother has let them loose in Central London today. Their step grandmother took them out for supper last night and a marvellous friend took the outdated contents of my freezer, cooked them and returned to me so we would have food...
When will this end? Will it end? When will the real Minerva, the brave, bold, courageous one reappear because I don't like this one. I don't like this mockery of her, this pale shadow that feels inadequate, stressed and tired all the time. Please, please, let me sleep.
Minerva
The tiredness that their school has engendered has made my daughters weepy as well and everytime they cry, tears fall from my eyes too onto their heads. The grey clouds outside mean that the lights have to stay on inside the house and the constant rain falling onto the windows is like a physical reminder of the monotony of time...
This is difficult. I am so low, so tired, so drained. I do summon up the most basic resources from my body to get dressed every day, go downstairs, talk to the girls before collapsing in bed again for the afternoon or going to the hospital for blood tests. Certainly, my blood cell counts are low. Chemotherapy doesn't just attack cancer cells but all rapidly reproducing cells in the body including hair cells and blood marrow cells. This means that as well as the hair, my white blood cell count is down which means that my barrier to infection is non-existent.
This, my dears, is not a life. This is a drudge, a waste of energy. I am not a wonderful, caring, lovely, all encompassing mother with my arms open wide for my darling babies, I am a ghost, a bald spectre who is barely moving around the rooms, whose path barely disturbs the flow of air.. I am not influencing my surroundings at all, not giving anything back to my dear lovely children and I feel the dearth, feel the lack of energy and power.. What lesson am I imparting? How am I teaching them what a parent should be?
My family though have been fantastic. My mother has been round every day and taken the girls out for various outings and my brother has let them loose in Central London today. Their step grandmother took them out for supper last night and a marvellous friend took the outdated contents of my freezer, cooked them and returned to me so we would have food...
When will this end? Will it end? When will the real Minerva, the brave, bold, courageous one reappear because I don't like this one. I don't like this mockery of her, this pale shadow that feels inadequate, stressed and tired all the time. Please, please, let me sleep.
Minerva
Sunday, February 11, 2007
Out of the darkness...
Chemotherapy hit again on Wednesday and I was relatively quiet until Saturday when the worst side effect of all this treatment kicked in: self pity. I was festering, culturing it. Why me? Why was I at home feeling grumpy, tired, depressed, low and angry and in pain when everyone else my age is out enjoying themselves, planning their next holiday, their next career move, their next outing with their children?
It was an effort for me to move off the sofa, to get out of bed and even put my clothes on. I feel utterly fed up with this disease, with the infiltration of my tissues and the subsequent poisoning of my system and my body.
I feel so boring at the moment. My life is entirely tenured by illness, by my physical and mental restrictions. A woman just forty, I talk of my ailments like a octogenarian, and actually, I daresay, they are a lot less body bound then I am. Sometimes, I look around me, I feel my inner life moving out of my body and looking at me wondering if this really is my life? Who is this woman because she certainly isn't the carefree 38 year old she was just a year and a half ago.
Now I wonder if I shall ever be able to return to my career, if my illness history will prejudice every work record I have, if I shall ever finish my qualifying year in teaching to advance up the scale and learn every day I have left. Will I be the mother I want to be for my daughters or will they learn about illness, debilitative disease and a woman who just can't summon up the energy for the tasks they long to do?
But today? Today my personal daffodils are peeking their heads through the snowdrifts. I managed to walk once, very slowly, around the park with my darling daughters and our laughter highlighted the flashes of spring amongst the winter mud. There is most certainly a future and whilst, there is still a long way to go, that is enough of a thought to hang on to for the moment.
Minerva
It was an effort for me to move off the sofa, to get out of bed and even put my clothes on. I feel utterly fed up with this disease, with the infiltration of my tissues and the subsequent poisoning of my system and my body.
I feel so boring at the moment. My life is entirely tenured by illness, by my physical and mental restrictions. A woman just forty, I talk of my ailments like a octogenarian, and actually, I daresay, they are a lot less body bound then I am. Sometimes, I look around me, I feel my inner life moving out of my body and looking at me wondering if this really is my life? Who is this woman because she certainly isn't the carefree 38 year old she was just a year and a half ago.
Now I wonder if I shall ever be able to return to my career, if my illness history will prejudice every work record I have, if I shall ever finish my qualifying year in teaching to advance up the scale and learn every day I have left. Will I be the mother I want to be for my daughters or will they learn about illness, debilitative disease and a woman who just can't summon up the energy for the tasks they long to do?
But today? Today my personal daffodils are peeking their heads through the snowdrifts. I managed to walk once, very slowly, around the park with my darling daughters and our laughter highlighted the flashes of spring amongst the winter mud. There is most certainly a future and whilst, there is still a long way to go, that is enough of a thought to hang on to for the moment.
Minerva
Wednesday, February 07, 2007
Round 1
Ding ding! Round 1.
In the red corner we have Minerva, proud, strong and just damn stubborn, she is showing her mental muscle to the crowd. Her gloves are soft and flexible with all the battles she has won so far against this one opponent.
Behind her, Minerva's Minxes are pushing her on. Their red pom poms, astonishing acrobatics and cheerful chants are mesmerising the crowd. Even Minerva's manager, Chemotherapy (very much a love hate relationship there we are told,) is standing looking nervous. His reputation is on the line too.
In the black corner, we see a relative heavyweight Cancer Carcinoma looking confident and assured. This fighter has won thousands of battles, 21, 000 in the last year alone and that was just women with blows to the chest.
Behind him a sullen group form: his daughters Lung and Brain, Uncle Liver, Aunts Ovary, Womb and Pancreas and the twin brothers Prostrate and Testicular back him up. 'Come on! Just one more!' they yell.
For remember this is a fight to the death. A fight not just for a woman, but for a family, a mother, a teacher, a friend, a daughter, a sister, a neice and an aunt. A woman whose life is touched and touches many.
The referee steps forward, blows his whistle and the fight begins. The tumour is felt and the crows wait anxiously for the result. They are fidgety as is Cancer Carciii when the referee appears to be taking his time..What is the matter? Muttered whispers in the black corner, all is tense and taut in the ring.
The referee reappears. The winner is announced. The delay? The doctor had a problem in detecting the tumour manually. It has SHRUNK after one session of Chemotherapy's training. Cancer and his minions look bowed and as Minerva performs her victory parade, thanking her Minxes and the support of the crowd, he shrinks into the background.
We will know exactly how much it has shrunk with an ultrasound in two weeks time.
But for this bout? This round is a huge success for Minerva and Chemotherapy. The first battle belongs to Minerva but who will win the war?
Minerva.
In the red corner we have Minerva, proud, strong and just damn stubborn, she is showing her mental muscle to the crowd. Her gloves are soft and flexible with all the battles she has won so far against this one opponent.
Behind her, Minerva's Minxes are pushing her on. Their red pom poms, astonishing acrobatics and cheerful chants are mesmerising the crowd. Even Minerva's manager, Chemotherapy (very much a love hate relationship there we are told,) is standing looking nervous. His reputation is on the line too.
In the black corner, we see a relative heavyweight Cancer Carcinoma looking confident and assured. This fighter has won thousands of battles, 21, 000 in the last year alone and that was just women with blows to the chest.
Behind him a sullen group form: his daughters Lung and Brain, Uncle Liver, Aunts Ovary, Womb and Pancreas and the twin brothers Prostrate and Testicular back him up. 'Come on! Just one more!' they yell.
For remember this is a fight to the death. A fight not just for a woman, but for a family, a mother, a teacher, a friend, a daughter, a sister, a neice and an aunt. A woman whose life is touched and touches many.
The referee steps forward, blows his whistle and the fight begins. The tumour is felt and the crows wait anxiously for the result. They are fidgety as is Cancer Carciii when the referee appears to be taking his time..What is the matter? Muttered whispers in the black corner, all is tense and taut in the ring.
The referee reappears. The winner is announced. The delay? The doctor had a problem in detecting the tumour manually. It has SHRUNK after one session of Chemotherapy's training. Cancer and his minions look bowed and as Minerva performs her victory parade, thanking her Minxes and the support of the crowd, he shrinks into the background.
We will know exactly how much it has shrunk with an ultrasound in two weeks time.
But for this bout? This round is a huge success for Minerva and Chemotherapy. The first battle belongs to Minerva but who will win the war?
Minerva.
Friday, February 02, 2007
Done it...
I have done it. Tired of the hair that surrounded me day and night, I have gone ahead and shaved my head. It looks very strange indeed because parts of my scalp are completely hairless and some are still dark with patches of hair. A piebald pony is the closest approximation. I had it cut yesterday at a salon in the hospital which was terribly run down and virtually empty except for a lady in a wheelchair having a rinse and set. They were delightful; we began with shaver number 4 and then went down to number 1 when the first look came out like a bad case of canine mange. I didn't have any money on me and they very sweetly said it didn't matter, that I could return. They were impressed at how much I was laughing and joking about the cold, about how 'butch ' I looked. How lovely people are when the barriers of triviality are stripped away.
I felt really vulnerable when I left though. Last time, because I was working and just 'getting on with it' I didn't even consider what I looked like. This time, I am constantly shocked at the convict that stares back at me out of every mirror. When out, I stare at people almost daring them to look away or grimace at my ugliness. Strange how on the outside, it is so easy to smile and laugh and make fun of oneself and on the inside I am curled up, like a tired puppy, hurting with how this treatment is ravaging my body and my life...
And to the ambulance man I caught looking at me who told me how cute I looked - bless you....
Minerva
I felt really vulnerable when I left though. Last time, because I was working and just 'getting on with it' I didn't even consider what I looked like. This time, I am constantly shocked at the convict that stares back at me out of every mirror. When out, I stare at people almost daring them to look away or grimace at my ugliness. Strange how on the outside, it is so easy to smile and laugh and make fun of oneself and on the inside I am curled up, like a tired puppy, hurting with how this treatment is ravaging my body and my life...
And to the ambulance man I caught looking at me who told me how cute I looked - bless you....
Minerva
Thursday, February 01, 2007
Hair today, gone tomorrow...
Hair today, gone tomorrow is a lesson for us all and I make absolutely no apology for the plethora of bad hair word play that will, I hope emerge in this post. As I brush aside the objections, part the waves of groans that are, I am sure, now populating the internet universe, I curl up at the thought of the permanent paroxysms of pain that will now be shuddering around me. Tou pee or not tou pee that is the question. Fur what I ask? Now that my thatch is burnt and my scalp protrudes going baldly where no man has been before (these are getting really bad) I am not sure if I can be bothered to 'wig' up. The mane thing is that it will regrow, that this stubble will become another field of corn and does this peace of hair really need a hair piece?
Until that time a question. What on EARTH do I do with the hair that I have accumulated? (And no, I can neither donate it or sell it so other suggestions please!)
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