What would you do if you only had six months to live? Seriously. It is now March and you have until October. What would you do?
Kids? Family? Travel? Write?
Where do your priorities fly to? What does your mind automatically dismiss and where does it dart to?
When asked this question yesterday, my mind immediately went to my children, my boyfriend, my family and enjoying each other and the time I would have left.
And today, I ask myself, if that is the case, if my children and my family are my be all and end all for being on this earth, are my life goal and when all is stripped away are what is most important, what am I doing today, tomorrow and the day after that to ensure that I keep my eyes and focus on what I consider the most important thing in my life?
What would you have answered?
Minerva
Friday, March 30, 2007
Thursday, March 29, 2007
Movement
I crawled to the hospital today for an appointment with the consultant responsible for the next stage of the treatment; radiotherapy. There is a fifty per cent chance that I will be able to have it again as we are not absolutely sure if the zones which were covered last time need to be radiated again. The risk of cancer occurring is otherwise too high. Laughable, isn't it? Cancer if I do, cancer if I don't.... Uh huh... Beats the adage about a rock and a hard place, I think...
I personally suspect that the only reason that the cancer has stopped just below my collar bone this time is because I was radiated higher up my neck last time. I am sure, emotionally, that there has been a gate imposed which stops those awful tiny cells travelling up my lymph system into the rest of me.
So I have a planning meeting sometime in the next four weeks when I shall be brought into a room and radiographers will draw the fields of radiation they used last time and judge whether I shall be microwaved again. Ironically, I am really hoping that they can radiate me again. I want this cancer to be fried in its bed, its roots to frazzle within the my fragrant flesh, to know that it is dried up completely. The alternative is surgery, really risky surgery. Surgery that will take place within a few millimetres of the scapuleic vein, the main source of blood travelling back from the heart and I don't feel particularly secure or safe about that....yet. I say yet, because a year and a half ago, I wouldn't have felt particularly sure about radiation and here am I asking for it.
Change can be a good thing.
Minerva
I personally suspect that the only reason that the cancer has stopped just below my collar bone this time is because I was radiated higher up my neck last time. I am sure, emotionally, that there has been a gate imposed which stops those awful tiny cells travelling up my lymph system into the rest of me.
So I have a planning meeting sometime in the next four weeks when I shall be brought into a room and radiographers will draw the fields of radiation they used last time and judge whether I shall be microwaved again. Ironically, I am really hoping that they can radiate me again. I want this cancer to be fried in its bed, its roots to frazzle within the my fragrant flesh, to know that it is dried up completely. The alternative is surgery, really risky surgery. Surgery that will take place within a few millimetres of the scapuleic vein, the main source of blood travelling back from the heart and I don't feel particularly secure or safe about that....yet. I say yet, because a year and a half ago, I wouldn't have felt particularly sure about radiation and here am I asking for it.
Change can be a good thing.
Minerva
Monday, March 26, 2007
Not good
Chemo has truly hit me. Woke up Sunday with a headache that wound around my teeth and the plates of my head. Moving my head made me shout with pain and I was completely unable to answer calls, or get up at all. Up today to try and go to the hospital and I nearly fainted. Back to bed, before trying again and it took me 20 minutes to walk a journey of 5 minutes.
They took blood from me, and that induced another giddy fit so I lay down for four hours in the consulting room. I was unable to function as a normal person, unable to put words in front of the other or contemplate moving.
According to the charming consultant I then saw, this is the combined toxicity of the chemo in my body having this effect. He talked about reducing the next dose which I told him not to do. If I am going to go through this horridness then I will do it at full strength thank you.
Back off to bed, normal service will be resumed at some point.
Minerva
They took blood from me, and that induced another giddy fit so I lay down for four hours in the consulting room. I was unable to function as a normal person, unable to put words in front of the other or contemplate moving.
According to the charming consultant I then saw, this is the combined toxicity of the chemo in my body having this effect. He talked about reducing the next dose which I told him not to do. If I am going to go through this horridness then I will do it at full strength thank you.
Back off to bed, normal service will be resumed at some point.
Minerva
Saturday, March 24, 2007
Step by Step
We have progress. Chemo number 4 on Wednesday and a hurried consultation with the head honcho of the teaching hospital where I go. He is very pleased; the lump is no longer noticeably palpable and I have been referred for radiotherapy following chemo. If, by any chance, the current lump area was already irradiated last time than radiotherapy is no longer an option due to the increased risk of cancer. (Damned either way!) This means that there is an outside chance that we are looking at surgery despite the danger as the lymph node is so near to the main scapuleic vein to the heart.
However, I think we will tackle that when we get there. I am just so grateful that we are getting there, that returning to work is becoming a dot on my horizon rather than being surrounded by the undulating tedium of treatment. There is a goal in sight, an aim, a signpost back to the road of normality.
And speaking of steps, and goals two wonderful people are doing amazing things for cancer. Craziequeen whose support has been invaluable to me since being rediagnosed is actually walking in my honour. Please, please, if you can, sponsor her. Every penny makes a difference. I am constantly amazed by how new drugs and treatments are constantly put to me and this is all because of people like CQ walking and raising money for cancer and cancer research. Click here, and please offer her some support.
The second? Many of you may know Amanda whose husband Eric died suddenly of leukaemia last year. Despite the fact that she has done so much for cancer, and for leukaemia, she is still as unselfish as ever, dedicated to raising money to 'whip Cancer's ass' as she puts it. Eric's uncle has taken this on and in memory of Eric, has started walking five million steps for cancer. Please, if you can, contribute or add your own support here...
And finally, it is but a small step for me, but this is WOMP's three hundredth post. Every journey of a thousand miles begins, indeed, with a single step.
Minerva
However, I think we will tackle that when we get there. I am just so grateful that we are getting there, that returning to work is becoming a dot on my horizon rather than being surrounded by the undulating tedium of treatment. There is a goal in sight, an aim, a signpost back to the road of normality.
And speaking of steps, and goals two wonderful people are doing amazing things for cancer. Craziequeen whose support has been invaluable to me since being rediagnosed is actually walking in my honour. Please, please, if you can, sponsor her. Every penny makes a difference. I am constantly amazed by how new drugs and treatments are constantly put to me and this is all because of people like CQ walking and raising money for cancer and cancer research. Click here, and please offer her some support.
The second? Many of you may know Amanda whose husband Eric died suddenly of leukaemia last year. Despite the fact that she has done so much for cancer, and for leukaemia, she is still as unselfish as ever, dedicated to raising money to 'whip Cancer's ass' as she puts it. Eric's uncle has taken this on and in memory of Eric, has started walking five million steps for cancer. Please, if you can, contribute or add your own support here...
And finally, it is but a small step for me, but this is WOMP's three hundredth post. Every journey of a thousand miles begins, indeed, with a single step.
Minerva
Tuesday, March 20, 2007
Terrible Beauty
On Sunday I took a trip to Ronda, one of the most beautiful towns in Spain and where the first bull fighting arena was built. Whatever you think about bull fighting, and this is not the place to argue about it, you cannot deny that there is an awful grandeur and dignity about it all. The ceremony of the matador, the dignity of an animal that fights to the death, the ritual that surrounds the fatal dance, all have a terrible beauty. I have never seen a bullfight, but as I imagine the blood, the pain, the dance of the matador, the chance that man or bull will go down first, I feel that I wouldn't be able to look through my hands, that although I would feel compelled to witness the last moments of a beautiful animal, that I wouldn't be able to look for the sheer cruelty and unfairness of it all.
And the same is true of cancer and those who suffer from it. I wore a scarf most of the time in Spain, but on the way over, when I was hot, I removed it and the looks I got, that I caught, were similar to the looks that I would give the bullfight. I would look for curiosity's sake, because of the cruelty of a woman robbed of her hair, and yet, I would also want to look away because of the sheer anomaly of it all, of a woman with no hair. The cruelty too, of a woman robbed of her 'crowning' glory, as well as a recognition that a bald woman is facing up to her mortality, has been temporarily or perhaps permanently crippled by cancer and its treatment. Just like the bull and his matador, cancer and its fighter are dancing. In a bullfight, the outcome is certain, but this bull isn't giving up anytime soon.
Minerva
And the same is true of cancer and those who suffer from it. I wore a scarf most of the time in Spain, but on the way over, when I was hot, I removed it and the looks I got, that I caught, were similar to the looks that I would give the bullfight. I would look for curiosity's sake, because of the cruelty of a woman robbed of her hair, and yet, I would also want to look away because of the sheer anomaly of it all, of a woman with no hair. The cruelty too, of a woman robbed of her 'crowning' glory, as well as a recognition that a bald woman is facing up to her mortality, has been temporarily or perhaps permanently crippled by cancer and its treatment. Just like the bull and his matador, cancer and its fighter are dancing. In a bullfight, the outcome is certain, but this bull isn't giving up anytime soon.
Minerva
Tuesday, March 13, 2007
Limbo
I feel that I must make a confession - Hail fellow bloggers, I have sinned. I talk in my posts of grabbing every last minute of each day, of prioritising one's life to make sure one completes that which is most important, of squeezing every last second out of every minute, and here I am, in limbo at home not doing anything. I am not climbing mountains, bonding with friends, racing up to see my children every five minutes or skipping out to art galleries to improve my mind. No, not at all and what right does that therefore give me to preach to all of you?
I sit here in my little room, the sunlight streaming in through the window next door to me highlighting the dust in the air, and I think, I dream, I read and I write. Is that a life? Does it really matter that I am not doing something that is world worthy? Does living in limbo mean that I am wasting the time that I have left? Does it matter that I am not matching the perceptions of others?
I don't think that any of us know the answer to that question. I suppose the closest one gets to an answer is that if I was on my deathbed and looked back to this time in my life, would I regret what I am doing, or rather not doing now? I had so many ideas before I fell into this monotonous existence. I was going to get fit, I was going to read all the books that I haven't read yet, I was going to write my book..and yet, all I do is lurch from one half baked idea to another, not enough energy to complete anything and too much energy to stay in bed and rest...
Or maybe this limbo, this stasis is actually just part of the process of healing? What were those four reactions, shock, denial, anger, acceptance? Is this part of one of those? Is this existence that I am leading, I hesitate to call it a life, an existence which is naturally curtailed by cancer and its treatment?
I have no answers, only questions.....
Minerva
I sit here in my little room, the sunlight streaming in through the window next door to me highlighting the dust in the air, and I think, I dream, I read and I write. Is that a life? Does it really matter that I am not doing something that is world worthy? Does living in limbo mean that I am wasting the time that I have left? Does it matter that I am not matching the perceptions of others?
I don't think that any of us know the answer to that question. I suppose the closest one gets to an answer is that if I was on my deathbed and looked back to this time in my life, would I regret what I am doing, or rather not doing now? I had so many ideas before I fell into this monotonous existence. I was going to get fit, I was going to read all the books that I haven't read yet, I was going to write my book..and yet, all I do is lurch from one half baked idea to another, not enough energy to complete anything and too much energy to stay in bed and rest...
Or maybe this limbo, this stasis is actually just part of the process of healing? What were those four reactions, shock, denial, anger, acceptance? Is this part of one of those? Is this existence that I am leading, I hesitate to call it a life, an existence which is naturally curtailed by cancer and its treatment?
I have no answers, only questions.....
Minerva
Sunday, March 11, 2007
Fear
Reading some of my referral statistics the other day, I noted that quite a few people came to WOMP having googled the words, 'fear of cancer' so I did. Did you know that there are huge numbers of message boards filled with posts from people who are terrified of cancer? Whose parents, sisters, brothers, daughters, sons, aunts and uncles have died or suffered from cancer and who are consequently living in the looming shadow of the ultimate Damoclean sword? What is even more incredible is that before I was diagnosed in September 2005 I was one of them.
My father died young of cancer. Although it was smoking induced, the time between diagnosis and death was only four months and I was always afraid that this would mean I too would be leaving early. Every cough could have been a symptom . Strangely enough though, when I was actually diagnosed with it the actual fear of having it left. Of course, the first thing you think of when you are diagnosed is that you are going to die, and die soon. Living with cancer isn't something our generation saw when we were young. We saw our relatives diagnosed and then quite quickly die of cancer. It is only our generation that is changing that; thousands of us are now living, loving, laughing with cancer.
And this brings me, I think, to my final point. Cancer, actually, isn't that scary. I freely admit that death is frightening, that leaving my girls without their mother is terrifying but actual cancer ISN'T SCARY. Cancer just is, and it happens to be part of my life at the moment and possibly in the future. It is much less frightening for the person going through the treatment and the cancer itself than it is for those who are closest both in proximity and love. That is something I have learnt. I was so frightened for my father, and I am not frightened for myself for I know the power or not within me.
Actually having cancer, in its own way, isn't that scary because it is certainty. Yes, it is unfavourable certainty; I know that statistically I shall not live until I am 70, I know that it will probably come back within the next 10 years or so and that it will eventually get me. I know that but it doesn't terrify me. On the contrary, it gives me a certain hope that I shall achieve those things that are most important to me. We all know the maxim of a 'bus getting us tomorrow'. A lovely red double decker bus may indeed get me, but cancer will almost certainly. But I am not afraid of getting it any more; cancer is just an illness and an illness cannot destroy a person, cannot wreck a family and cannot intimidate the human spirit. What it does do is make one realise how special time is on this earth, how precious the relationships and friendships are that we make, and how each of us has only one chance and that is here, and now.
Don't let the fear of a disease take your life away.
Minerva
My father died young of cancer. Although it was smoking induced, the time between diagnosis and death was only four months and I was always afraid that this would mean I too would be leaving early. Every cough could have been a symptom . Strangely enough though, when I was actually diagnosed with it the actual fear of having it left. Of course, the first thing you think of when you are diagnosed is that you are going to die, and die soon. Living with cancer isn't something our generation saw when we were young. We saw our relatives diagnosed and then quite quickly die of cancer. It is only our generation that is changing that; thousands of us are now living, loving, laughing with cancer.
And this brings me, I think, to my final point. Cancer, actually, isn't that scary. I freely admit that death is frightening, that leaving my girls without their mother is terrifying but actual cancer ISN'T SCARY. Cancer just is, and it happens to be part of my life at the moment and possibly in the future. It is much less frightening for the person going through the treatment and the cancer itself than it is for those who are closest both in proximity and love. That is something I have learnt. I was so frightened for my father, and I am not frightened for myself for I know the power or not within me.
Actually having cancer, in its own way, isn't that scary because it is certainty. Yes, it is unfavourable certainty; I know that statistically I shall not live until I am 70, I know that it will probably come back within the next 10 years or so and that it will eventually get me. I know that but it doesn't terrify me. On the contrary, it gives me a certain hope that I shall achieve those things that are most important to me. We all know the maxim of a 'bus getting us tomorrow'. A lovely red double decker bus may indeed get me, but cancer will almost certainly. But I am not afraid of getting it any more; cancer is just an illness and an illness cannot destroy a person, cannot wreck a family and cannot intimidate the human spirit. What it does do is make one realise how special time is on this earth, how precious the relationships and friendships are that we make, and how each of us has only one chance and that is here, and now.
Don't let the fear of a disease take your life away.
Minerva
Tuesday, March 06, 2007
Novelty
I couldn't write yesterday. And when I say I couldn't write, that is exactly what I mean. Words have always been easy for me; they have flowed like ducklings after their mother. They have always lined up in the right order and almost elected themselves for selection. Yesterday, that wasn't the case. Yesterday, I tried to begin my blog post three separate times before giving up in frustration. I was like a practised ballet dancer who suddenly finds that her feet are enemies instead of friends. My words weren't lining up, they weren't articulate messengers of meaning but actively blocking me, getting in the wrong place, and I tripped over them time after time.
That has been a first. I realised yesterday how much I take for granted my ability to manipulate words to express meaning, to organise and arrange them into the best possible order for my purpose. Yesterday, I was hardly capable of writing a sentence and indeed, even talking logically was difficult. Of course, I am sure there are those amongst you who feel that way about women most of the time, but, personally speaking, yesterday was a real shock to my potency.
I recognise today, as I read the scratchy words above me that I am not back to my 'flow' yet. That this prose is hard worked and won and workmanlike rather than elegant and aesthetically pleasing. But it does work, and unlike my body which is currently in the depths of chemo induced languor, it seems fit for purpose.
Speaking of purpose, I went into hospital to have my blood levels checked again and met a wonderful couple there. The subject of my blog came up and I was asked why I felt the need to write about the cancer experience. After all, there is so much information out there, particularly on the subject of breast cancer. I have always felt that whilst there is so much factual information out on the web, in books or in libraries, there is very little which gives the true story of what it is like to face the emotional repercussions of something like this, to understand what it really is like to face one's own mortality for oneself and one's children or the day to day struggles of 'keeping on, keeping on.'.
But beyond those high 'falutin' ambitions, this has always been a place where I write, honestly and openly about the emotions that this disease has engendered in me and where I have been lucky and privileged enough to strike chords in enough people to continue.
Minerva
That has been a first. I realised yesterday how much I take for granted my ability to manipulate words to express meaning, to organise and arrange them into the best possible order for my purpose. Yesterday, I was hardly capable of writing a sentence and indeed, even talking logically was difficult. Of course, I am sure there are those amongst you who feel that way about women most of the time, but, personally speaking, yesterday was a real shock to my potency.
I recognise today, as I read the scratchy words above me that I am not back to my 'flow' yet. That this prose is hard worked and won and workmanlike rather than elegant and aesthetically pleasing. But it does work, and unlike my body which is currently in the depths of chemo induced languor, it seems fit for purpose.
Speaking of purpose, I went into hospital to have my blood levels checked again and met a wonderful couple there. The subject of my blog came up and I was asked why I felt the need to write about the cancer experience. After all, there is so much information out there, particularly on the subject of breast cancer. I have always felt that whilst there is so much factual information out on the web, in books or in libraries, there is very little which gives the true story of what it is like to face the emotional repercussions of something like this, to understand what it really is like to face one's own mortality for oneself and one's children or the day to day struggles of 'keeping on, keeping on.'.
But beyond those high 'falutin' ambitions, this has always been a place where I write, honestly and openly about the emotions that this disease has engendered in me and where I have been lucky and privileged enough to strike chords in enough people to continue.
Minerva
Thursday, March 01, 2007
How to treat someone who has cancer.
A friend called me tonight, a friend whom I have always really liked, and got on well with but never quite sure if it was returned...Do you have those kind of friends? We have talked several times about 'getting together' but one thing or another always got in the way, and I thought that I would leave it as I have a complete phobia about pushing too hard.
Well, that friend called me tonight we have a really honest chat about how my friends are nervous about calling or communicating and I, in return, am nervous about ringing them up and inflicting my troubles on them. So, spurred by our honesty tonight, I thought a really good idea would be to clarify some of the ways that YOU can help someone who has cancer or really any chronic illness.
Of course, all you wonderful people that come back and comment and really, really listen to me on here, are a complete life saver. I can only be as honest, and as direct as I want to because of the way you all accept my feelings and for that, I thank you all deeply from the bottom of my heart...
So how can you help?
1) Don't wait to hear from them but call, text or email to make it clear that you are still interested. I am petrified to boring you to tears. I know that my friends are all in a completely different 'zone' to me. They are juggling young children, schools, dinner parties, husbands and forging their own identities within their careers. They are not thinking about whether their wills are completely up to date, sorting through their 'stuff' so if they do go, their kids won't have to do it, they aren't waking up nervously every morning and feeling their necks to see if the cancer has, by chance, jumped up somewhere else...and I don't want to bore you with it all.
2) Please talk to me about your life without saying stuff like, 'compared to your troubles...'. Yes, cancer is major, but I want to share your life still. By talking about trivia as well, you take me out of my preoccupation and help to shrink the fear. It makes cancer balance with your problems and it really helps me to know that I can still be a useful listener and friend to you. I know I am hugely volatile at the moment. It is getting better but everytime someone asks me how I am and I reply truthfully, tears start flowing. I don't mean to, it just happens and because I am so desperately vulnerable at the moment, I feel that I am taking all the time, and I really really want to be a good friend to you as well. I desperately want to feel that I can still give, as well as take.
3) Please forgive me if I don't leap to call you back, if I can't accept an offer of help, or if I seem reticent. The drugs I am on at the moment, as numerous blog friends of mine can attest mean that I am getting to bed somewhere between 4 and 6am every morning. My energy levels are ok at the beginning of the day and then droop massively. That affects my emotional reserves too and sometimes I can call you back and sometimes, I just want to shrivel up inside my blanket on my sofa and avoid any contact with the outside world. I will call, I promise, and if you call back, I will be delighted to hear from you.
4) Chemo brain is a real syndrome. Chemo does affect the memory and I forget so much. My mother will remind me of something and the next minute I will have completely forgotten what I had to do. If you do need me to do something, please remind me over and over. Just treat me like an aged, forgetful aunt and we will be fine!
5) I need you, I need you desperately. Because I am not working, because my children are not always at home, I really need to feel connected. You, my friends, can help me to feel that, help me to feel that I am still a part of your lives even though I am, through necessity, burrowed in my house. My self esteem has plummeted due to the side effects: my hands are peeling with blisters and dry, flaky skin which makes them feel burnt and hard to move,my nails are long as they are too painful to cut, my face has erupted with dark blotches on one side, I am bald and I am bloated with steroids. For a fat teenager who had hoped to have left those days behind, I am deeply insecure about the way I look and just catching a sight of myself in a window, or a mirror serves to remind me of the dichotomy between how I feel, and how I look. This has complete battered the way i feel about myself. I am insecure socially, emotionally and physically.. A good day means that I get dressed, feed the dog, cook, get to the gym and read, and collapse....
6) I have always been appalling at keeping in touch. I know that, I am tremendously insecure socially and I really don't want to bother you or make you feel that you have to invite me over, or that you have to do something because I really don't want to make this that kind of post and I can't invite you back at the moment and it all comes back to that taking without giving thing...
7) There are real dangers associated with being with people the week after chemo. If I catch a cold which turns into an infection and makes my temperature rise above 38 degrees, I have to go directly to hospital where I will be admitted and put in IV antibiotics and given transfusions to raise my white blood cell count which has been decimated by the chemo. I don't want that to happen so if I ask you if your house is 'coldy' or you have viruses, it isn't that I don't want to see you, that I know you haven't wiped your children's noses for three weeks, or that you are so covered in snot, that they call you the 'green house', it is just that I recognise that my job over these six treatments is to allow the chemo to work so that I can get better to beat this bloody thing and be around for my children as long as I can....
8) Last and not least, people in my situation HATE ASKING FOR HELP. We are so embarrassed at having to ring up and appear vulnerable, and needy... We know you can't read minds, that you need direction but we want to appear strong, and in charge of our destiny and letting the real vulnerability through, the fact that we feel a victim of our illness, is scary and frightening because, let's face it, we all hate asking for help don't we, preferring to cope on our own.
And finally, thank you for reading this, if you have... Thank you for being my friends. Cancer can do many things, but it cannot take friendships away, it cannot split up close families, and it can't decimate the human spirit...
Here's to you,
Minerva
Well, that friend called me tonight we have a really honest chat about how my friends are nervous about calling or communicating and I, in return, am nervous about ringing them up and inflicting my troubles on them. So, spurred by our honesty tonight, I thought a really good idea would be to clarify some of the ways that YOU can help someone who has cancer or really any chronic illness.
Of course, all you wonderful people that come back and comment and really, really listen to me on here, are a complete life saver. I can only be as honest, and as direct as I want to because of the way you all accept my feelings and for that, I thank you all deeply from the bottom of my heart...
So how can you help?
1) Don't wait to hear from them but call, text or email to make it clear that you are still interested. I am petrified to boring you to tears. I know that my friends are all in a completely different 'zone' to me. They are juggling young children, schools, dinner parties, husbands and forging their own identities within their careers. They are not thinking about whether their wills are completely up to date, sorting through their 'stuff' so if they do go, their kids won't have to do it, they aren't waking up nervously every morning and feeling their necks to see if the cancer has, by chance, jumped up somewhere else...and I don't want to bore you with it all.
2) Please talk to me about your life without saying stuff like, 'compared to your troubles...'. Yes, cancer is major, but I want to share your life still. By talking about trivia as well, you take me out of my preoccupation and help to shrink the fear. It makes cancer balance with your problems and it really helps me to know that I can still be a useful listener and friend to you. I know I am hugely volatile at the moment. It is getting better but everytime someone asks me how I am and I reply truthfully, tears start flowing. I don't mean to, it just happens and because I am so desperately vulnerable at the moment, I feel that I am taking all the time, and I really really want to be a good friend to you as well. I desperately want to feel that I can still give, as well as take.
3) Please forgive me if I don't leap to call you back, if I can't accept an offer of help, or if I seem reticent. The drugs I am on at the moment, as numerous blog friends of mine can attest mean that I am getting to bed somewhere between 4 and 6am every morning. My energy levels are ok at the beginning of the day and then droop massively. That affects my emotional reserves too and sometimes I can call you back and sometimes, I just want to shrivel up inside my blanket on my sofa and avoid any contact with the outside world. I will call, I promise, and if you call back, I will be delighted to hear from you.
4) Chemo brain is a real syndrome. Chemo does affect the memory and I forget so much. My mother will remind me of something and the next minute I will have completely forgotten what I had to do. If you do need me to do something, please remind me over and over. Just treat me like an aged, forgetful aunt and we will be fine!
5) I need you, I need you desperately. Because I am not working, because my children are not always at home, I really need to feel connected. You, my friends, can help me to feel that, help me to feel that I am still a part of your lives even though I am, through necessity, burrowed in my house. My self esteem has plummeted due to the side effects: my hands are peeling with blisters and dry, flaky skin which makes them feel burnt and hard to move,my nails are long as they are too painful to cut, my face has erupted with dark blotches on one side, I am bald and I am bloated with steroids. For a fat teenager who had hoped to have left those days behind, I am deeply insecure about the way I look and just catching a sight of myself in a window, or a mirror serves to remind me of the dichotomy between how I feel, and how I look. This has complete battered the way i feel about myself. I am insecure socially, emotionally and physically.. A good day means that I get dressed, feed the dog, cook, get to the gym and read, and collapse....
6) I have always been appalling at keeping in touch. I know that, I am tremendously insecure socially and I really don't want to bother you or make you feel that you have to invite me over, or that you have to do something because I really don't want to make this that kind of post and I can't invite you back at the moment and it all comes back to that taking without giving thing...
7) There are real dangers associated with being with people the week after chemo. If I catch a cold which turns into an infection and makes my temperature rise above 38 degrees, I have to go directly to hospital where I will be admitted and put in IV antibiotics and given transfusions to raise my white blood cell count which has been decimated by the chemo. I don't want that to happen so if I ask you if your house is 'coldy' or you have viruses, it isn't that I don't want to see you, that I know you haven't wiped your children's noses for three weeks, or that you are so covered in snot, that they call you the 'green house', it is just that I recognise that my job over these six treatments is to allow the chemo to work so that I can get better to beat this bloody thing and be around for my children as long as I can....
8) Last and not least, people in my situation HATE ASKING FOR HELP. We are so embarrassed at having to ring up and appear vulnerable, and needy... We know you can't read minds, that you need direction but we want to appear strong, and in charge of our destiny and letting the real vulnerability through, the fact that we feel a victim of our illness, is scary and frightening because, let's face it, we all hate asking for help don't we, preferring to cope on our own.
And finally, thank you for reading this, if you have... Thank you for being my friends. Cancer can do many things, but it cannot take friendships away, it cannot split up close families, and it can't decimate the human spirit...
Here's to you,
Minerva
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