A month later and the first of many checkups with the team. A charming consultant today who listened eagerly to all my worries and helped me address them. Firstly, I was concerned that the result of the Team Meeting had decided that I should have a CT scan at six months only. My cancer had returned within 5 months last time and I was worried by the length of time. Today, it was decided that I should have a CT scan at three months and then again at four months and so on gradually lengthening the amount of time between each one provided the news was good.
As far as future treatment was concerned, if the three month scan was clear of cancer, good, but if not than I would be put on a tablet form of chemo Xeloda which can be taken indefinitely and have far fewer side effects which sounds hopeful. It is strange to think about a future where having cancer and chemo will be a regular part of my life, rather than episodes which punctuate my normality. Will I be one of those heroines that continue to live, to work to love and only an occasional off day reminds one of having cancer?
Work, yes, work. I hope to return at the beginning of July to school but have not had any contact from occupational health to tell me what their recommendations are. My benefits from school are now dwindling significantly due to the time I have had off sick last financial year and this one. I have two months of half pay and then, from the 11th of July, that is it; nada, nothing, zilch and as a mother of three children that scares me stupid. I have always been an independent person who doesn't like relying on anyone. The idea of not having any money coming in, applying for benefits and disability payments which certainly won't pay my bills is a frightenng future. Of course, if I have to, I am sure I will rise to the challenge somehow, but it is something that I am ignoring for the moment, instead focussing on the hope of returning to school sooner than that.
And so normality is slowly permeating back into my days. I walked to the local supermarket the other day and did it at a reasonably quick pace. Not as fast as I used to but certainly at the pace of an ordinary person. On the way back I could carry four heavy supermarket bags and again, that is a sign that I am gently returning to the tasks that I used to be able to do without thinking. Strange how much we take for granted when we are well. I will never again dart in front of someone who walks slowly, I will offer to carry someone's bags when they are struggling or offer my seat up because I know only too well how difficult those 100 yards can be to someone who fights with every step. My legs and ankles are slowly reducing in size but until last week the persistent feeling of wading through thick honey sapped my strength.
Don't let me forget, and please, don't make me remember,
Minerva
Wednesday, May 30, 2007
Friday, May 18, 2007
View
How strange a different perspective makes. I am still so affected by the chemotherapy; my legs are hugely swollen, my eyes weep yellow gunk that glues them up, and my nails are so painful but because I am no longer looking to the next treatment, it all seems better. My eyes are not turned to the next island of treatment but instead to the mainland of normality.
Yesterday I had a meeting with occupational health regarding my return to work. Those of you who know me in real life know that one of my passions is my work. In many ways the hardest thing about this whole episode in my life is the fact that my job has been snatched from me. I hate lassitude and limbo and that has been the main essence of my life for the last five months. Suddenly I am looking forward to returning to school, even on a part time basis by the end of the school year.
There is, however, always a dark side. On the other side of the ship, the side that faces away from the mainland the sharks of recurrence cycle. The doctor talked to me about retirement due to ill health, about financial considerations, about applying directly to the pension operators for early payment, or even death in service pay outs. That, my friends, scares me still. I don't feel ready to put up those sails yet. I feel that I have to live as though I will be here always, that I have to grasp life with both hands and although I am aware of those sharks, I don't feel I have to look them in the eyes yet. I would rather wait until I am actually in the water with them.
The key I think to being able to relax back into work is reassurance. I am concerned as I have been told by the medical team that the main source of regulation will be a CT scan after 6 months. I don't think that is good enough. This cancer, after all, was nearly 3 centimetres big (a satsuma in size) 5 months after the end of aggressive treatment. I want a scan every three months for the first 6 months and then move to six months. I know that there is a risk from the degree of radiation, but you know what? I think the risk of cancer outranks that one..
Follow up with the oncologists is for the 30th May and I have been signed off ill until the 1st July so now it is just a waiting game. I wait for the report from occupational health telling me when I can have my life back and I wait for my body to settle down into its old self.
And meanwhile? Meanwhile I try to fight down this huge degree of frustration I am feeling. Inside, I am me still. I tell bad jokes, I still laugh too loud, I hug as many people as I can and wear my emotions on my sleeve as well as wanting to do everything as quickly as I can. And outside? Outside, I am a bloated, immobile dryskinned, flaky, bald monstrosity. When will the outer skin reflect the reality of my soul and mind? That is truly what I wait for, what I pray for and what I long for.
Minerva
Yesterday I had a meeting with occupational health regarding my return to work. Those of you who know me in real life know that one of my passions is my work. In many ways the hardest thing about this whole episode in my life is the fact that my job has been snatched from me. I hate lassitude and limbo and that has been the main essence of my life for the last five months. Suddenly I am looking forward to returning to school, even on a part time basis by the end of the school year.
There is, however, always a dark side. On the other side of the ship, the side that faces away from the mainland the sharks of recurrence cycle. The doctor talked to me about retirement due to ill health, about financial considerations, about applying directly to the pension operators for early payment, or even death in service pay outs. That, my friends, scares me still. I don't feel ready to put up those sails yet. I feel that I have to live as though I will be here always, that I have to grasp life with both hands and although I am aware of those sharks, I don't feel I have to look them in the eyes yet. I would rather wait until I am actually in the water with them.
The key I think to being able to relax back into work is reassurance. I am concerned as I have been told by the medical team that the main source of regulation will be a CT scan after 6 months. I don't think that is good enough. This cancer, after all, was nearly 3 centimetres big (a satsuma in size) 5 months after the end of aggressive treatment. I want a scan every three months for the first 6 months and then move to six months. I know that there is a risk from the degree of radiation, but you know what? I think the risk of cancer outranks that one..
Follow up with the oncologists is for the 30th May and I have been signed off ill until the 1st July so now it is just a waiting game. I wait for the report from occupational health telling me when I can have my life back and I wait for my body to settle down into its old self.
And meanwhile? Meanwhile I try to fight down this huge degree of frustration I am feeling. Inside, I am me still. I tell bad jokes, I still laugh too loud, I hug as many people as I can and wear my emotions on my sleeve as well as wanting to do everything as quickly as I can. And outside? Outside, I am a bloated, immobile dryskinned, flaky, bald monstrosity. When will the outer skin reflect the reality of my soul and mind? That is truly what I wait for, what I pray for and what I long for.
Minerva
Tuesday, May 15, 2007
Anger
I have been quiet, too quiet and the reason is simple. I have been so very, very angry. How strange, I hear you say, such good news and such a bizarre reaction. I agree, I completely agree. I have no explanation for how I feel, only that the juxtaposition of such very good news that the tumour has gone with the awful news that there is a 97% chance that it will come back in the next year has shortcircuited my emotions. Only that until Thursday I walked around as a great black ball of thunder with great sharp bristles of tactiturnity. I could physically feel it between my shoulders, in the furrows of my forehead and eternally in my chest as a hard, solid parasite eating away at my good humour. Everytime someone congratulated me on my good news, I silently shouted that I was going to die. Everytime someone commiserated on my emotional maelstrom, I silently yelled at them to be quiet and look at the positive side.
But then, on Thursday, I roused myself from my self imposed grumpy exile and went to visit an acupuncturist. Monosyllabically, I answered his questions and when I started talking about how angry I felt, the tears began to edge around my eyelids and flow down my face.
I laid down and he put needles in my back and almost immediately, I felt a flow through my skin into the ether. It was as though the tension in my body was trying to equalise with the currents in the air. I started to relax for the first time in 48 hours and breathe, breathe properly from my stomach, from my hips and chest.
I then turned onto my front, and he put needles into my foot, into what he said were the points which controlled anger. I jumped as they really hurt when they went in, especially on my left side, my tumour, cancer side. And something utterly remarkable happened. I felt a really strong current of energy, much like a current in the sea which flows around you, flow through me to my foot, along the needle and out into the air. It was like someone had a rope and was pulling all that energy, that anger, that force out of me. It felt utterly physical, like a current of electricity flowing through me and out through the needle.
And so my anger eased. I left the appointment softened, cleansed and able, once more, to face the challenges before me. It was utterly remarkable and so utterly comforting. I now feel able to look the news that I have had in the last week in the face and so I say to you, yes, I am incredibly lucky, so very very lucky that I currently have no cancer in me but I can also say, looking at you straight in the eyes, that if I am unlucky enough that it does come back, that I can, that I will fight once more, and I will get through whether the end result be back here again, or the ultimate end.
I can, and will do it because even in darkness, there is always hope.
Minerva
But then, on Thursday, I roused myself from my self imposed grumpy exile and went to visit an acupuncturist. Monosyllabically, I answered his questions and when I started talking about how angry I felt, the tears began to edge around my eyelids and flow down my face.
I laid down and he put needles in my back and almost immediately, I felt a flow through my skin into the ether. It was as though the tension in my body was trying to equalise with the currents in the air. I started to relax for the first time in 48 hours and breathe, breathe properly from my stomach, from my hips and chest.
I then turned onto my front, and he put needles into my foot, into what he said were the points which controlled anger. I jumped as they really hurt when they went in, especially on my left side, my tumour, cancer side. And something utterly remarkable happened. I felt a really strong current of energy, much like a current in the sea which flows around you, flow through me to my foot, along the needle and out into the air. It was like someone had a rope and was pulling all that energy, that anger, that force out of me. It felt utterly physical, like a current of electricity flowing through me and out through the needle.
And so my anger eased. I left the appointment softened, cleansed and able, once more, to face the challenges before me. It was utterly remarkable and so utterly comforting. I now feel able to look the news that I have had in the last week in the face and so I say to you, yes, I am incredibly lucky, so very very lucky that I currently have no cancer in me but I can also say, looking at you straight in the eyes, that if I am unlucky enough that it does come back, that I can, that I will fight once more, and I will get through whether the end result be back here again, or the ultimate end.
I can, and will do it because even in darkness, there is always hope.
Minerva
Tuesday, May 08, 2007
News
What makes you happy? The hug from a child? A fruit pastille on your tongue? A perfectly formed bloody Mary on the first day of a holiday?
I will tell you what does it for me; what makes my stomach flip and somersault and makes me cry with happiness and those are the words that 'your tumour has gone radiologically.' My tumour, ladies and gentlemen is no longer detectable on CT scan. It has gone, disappeared, sunk from view. There is no tumour left in my shoulder and indeed no discernible cancer cells in my body.
And that is just amazing, just incredible. For today ladies and gentlemen, I am completely cancer free.
And that, for today is enough.
*grinning*
Minerva
I will tell you what does it for me; what makes my stomach flip and somersault and makes me cry with happiness and those are the words that 'your tumour has gone radiologically.' My tumour, ladies and gentlemen is no longer detectable on CT scan. It has gone, disappeared, sunk from view. There is no tumour left in my shoulder and indeed no discernible cancer cells in my body.
And that is just amazing, just incredible. For today ladies and gentlemen, I am completely cancer free.
And that, for today is enough.
*grinning*
Minerva
Friday, May 04, 2007
Silence
I am not used to delivering news which is received in silence. I mean, what does one say to someone who is confronting overwhelming odds of not surviving longer than 15 years? Normally, the time of one's forties is for good news, the latest party, an occasional wedding, christening or birthday but not for me.
I still vacillate. My thoughts are constantly all over the place. I keep thinking that I must live as though I am in that three per cent. I will return to work; I will keep on keeping on; I will get fit, eat right and love and be there for my children for as long as I can. I will end up looking after my mother, as life should be and I will live and love the man of my dreams.
And then, in the cold grey light of the dawn, or the darkness that threatens before sleep, I feel the threat of that sharp blade of 97%. The probability that I won't see my children grow up, that I will not live to see myself or my beloved grow old. That the idea of holding hands on park benches at the age of 70 won't be in my game plan. I swirl in a vortex of longing to record as many memories, feelings and emotions as I can, and make myself fall and weep with pity. Pity for myself, pity for my family and pity for the beautiful gorgeous girls that will be robbed of their mother's loving arms.
I am still so angry. With the tiredness, the anger seeps out in hot tears as soon as I run into that brick wall of fatigue. It pours out of me in frustration at the lack of mobility, at the hobble of my stick along the pavement, and my slow, geriatric walking. I am utterly and completely furious. Furious with the universe, any God that does possibly exist and the sheer inexorable roll of the stone of Fate.
All in silence.
Minerva
I still vacillate. My thoughts are constantly all over the place. I keep thinking that I must live as though I am in that three per cent. I will return to work; I will keep on keeping on; I will get fit, eat right and love and be there for my children for as long as I can. I will end up looking after my mother, as life should be and I will live and love the man of my dreams.
And then, in the cold grey light of the dawn, or the darkness that threatens before sleep, I feel the threat of that sharp blade of 97%. The probability that I won't see my children grow up, that I will not live to see myself or my beloved grow old. That the idea of holding hands on park benches at the age of 70 won't be in my game plan. I swirl in a vortex of longing to record as many memories, feelings and emotions as I can, and make myself fall and weep with pity. Pity for myself, pity for my family and pity for the beautiful gorgeous girls that will be robbed of their mother's loving arms.
I am still so angry. With the tiredness, the anger seeps out in hot tears as soon as I run into that brick wall of fatigue. It pours out of me in frustration at the lack of mobility, at the hobble of my stick along the pavement, and my slow, geriatric walking. I am utterly and completely furious. Furious with the universe, any God that does possibly exist and the sheer inexorable roll of the stone of Fate.
All in silence.
Minerva
Thursday, May 03, 2007
Choices
Forgive me, it has been a while since my last blog entry...and the mimicry is deliberate. Events have moved forward drastically and I am currently in a whirling vortex of choices and thoughts and events..
It isn't good news so may I suggest that if you are reading this late at night, or if you are feeling at all down or tired, switch off now and read this in the morning when the streams of daylight will diminish the words...
I saw my consultant radiographer last Thursday for what I thought was a confirmation of the radiation schedule. Instead, he told me that as the tumour is so close to the nerves leading to my left arm as well as on the border of my previous radiation, there is a 30% chance that treating the area would induce permanent paralysis in my left arm. I am left handed.
Then an appointment was made with the head surgeon in conjunction with the consultant Radiographer this Tuesday to discuss surgical options instead... Basically the news is not good. Whilst surgery is definitely an option there is an extremely high chance based on their previous experience that my current tumour is not the only source of cancer in my body, to be precise, a 97% chance.
There is, I understand a 97% chance therefore that the cancer will return in the next 3 to 15 months based on these two consultants' experience.
Of course, that also means that there is three per cent chance that it won't return. My doctor to give me hope told me of a woman who twelve years after having this, is well and with no evidence of disease...but that is only one example and it is only 12 years.
My life has suddenly narrowed to a place where 12 years is a long time. I realise now that I will never change the world, that my legacy will not be the novel, the great political movement or some great benefit to mankind. And that is if I am in the 3%. If I am in the 97%, which, let's face it is more likely, we are looking probably at a maximum of 10 to 15 years with hope for new treatments and improvements in palliative care... My twins would be 21 and my eldest 23 but that way madness lies...
I am all over the place; I am in a vortex of hope, despair and practical planning. I want to buy memory boxes for my children, record my voice for them, and yet I want to go back to work and do up my house.. I spin from one trough to a high and I am terribly, inexorably and madly furious. Angry with my life and my luck.
How on earth can I possibly deserve this? How can a woman with so much to give, so much to live for have a 97% chance of her cancer returning?
Why? How?
To end with the current action. I am due for a CT scan this week for two reasons: the first so that we can check for evidence of metastasis, because clearly if there are other tumours, there is no point doing surgery on one area of the body ; secondly so the surgeon can see exactly what she is dealing with and the precise positioning of the tumour if it is the only current cancer in my body...
I am in pieces veering between anger and tears and yet, and yet, strangely enough since the beginning of this recurrence, I have always felt that this tumour was a station on the railway to secondary cancer. Although I am scared, frightened for my darling children that I leave behind, there is also an eye in the tornado, an eye that is relieved that I have been told the truth as I recognise it, and a calmness that results from meeting my future head on...
The war is not over yet; we move onto the next battle...
Minerva
It isn't good news so may I suggest that if you are reading this late at night, or if you are feeling at all down or tired, switch off now and read this in the morning when the streams of daylight will diminish the words...
I saw my consultant radiographer last Thursday for what I thought was a confirmation of the radiation schedule. Instead, he told me that as the tumour is so close to the nerves leading to my left arm as well as on the border of my previous radiation, there is a 30% chance that treating the area would induce permanent paralysis in my left arm. I am left handed.
Then an appointment was made with the head surgeon in conjunction with the consultant Radiographer this Tuesday to discuss surgical options instead... Basically the news is not good. Whilst surgery is definitely an option there is an extremely high chance based on their previous experience that my current tumour is not the only source of cancer in my body, to be precise, a 97% chance.
There is, I understand a 97% chance therefore that the cancer will return in the next 3 to 15 months based on these two consultants' experience.
Of course, that also means that there is three per cent chance that it won't return. My doctor to give me hope told me of a woman who twelve years after having this, is well and with no evidence of disease...but that is only one example and it is only 12 years.
My life has suddenly narrowed to a place where 12 years is a long time. I realise now that I will never change the world, that my legacy will not be the novel, the great political movement or some great benefit to mankind. And that is if I am in the 3%. If I am in the 97%, which, let's face it is more likely, we are looking probably at a maximum of 10 to 15 years with hope for new treatments and improvements in palliative care... My twins would be 21 and my eldest 23 but that way madness lies...
I am all over the place; I am in a vortex of hope, despair and practical planning. I want to buy memory boxes for my children, record my voice for them, and yet I want to go back to work and do up my house.. I spin from one trough to a high and I am terribly, inexorably and madly furious. Angry with my life and my luck.
How on earth can I possibly deserve this? How can a woman with so much to give, so much to live for have a 97% chance of her cancer returning?
Why? How?
To end with the current action. I am due for a CT scan this week for two reasons: the first so that we can check for evidence of metastasis, because clearly if there are other tumours, there is no point doing surgery on one area of the body ; secondly so the surgeon can see exactly what she is dealing with and the precise positioning of the tumour if it is the only current cancer in my body...
I am in pieces veering between anger and tears and yet, and yet, strangely enough since the beginning of this recurrence, I have always felt that this tumour was a station on the railway to secondary cancer. Although I am scared, frightened for my darling children that I leave behind, there is also an eye in the tornado, an eye that is relieved that I have been told the truth as I recognise it, and a calmness that results from meeting my future head on...
The war is not over yet; we move onto the next battle...
Minerva
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