Tuesday, January 31, 2006
The call came at 3pm to get back. By this time, I was tearful and tired. I cannot explain the anticipatory nausea I get but just walking down the corridor I feel the saliva flooding into my mouth and in between trying to hide it from the nurses, who I think will think I am pathetic and trying to almost distract myself, I was a mess by the time I arrived....
Luckily I was spotted by the homeopathic nurse whom I was meant to have a massage with and she found me a bed, and lay me down with three blankets.. The drip was started and so did the wonderful kneading of my scalp. The absolutely best thing about having little or no hair is being able to have one's head touched...better than even a back massage in my opinion...And I? I fell asleep - I must have been so tired, so emotionally weary and woke up at 6 semi refreshed. We left at 6.30 and I was so very, very tired...
This morning up early again. Into the hospital where I had an ultrasound appointment to measure the tumour and to put in a metal coil so that if it really does decline in size, the surgeon will still be able to find it...
First a local anaesthetic which stung a little and then a needle pierced down into the tumour. then a metal coil was pushed down into it, the needle retracted and that was it. The tumour has not shrunk at all at which I was really disappointed... but there was a bit of the tumour which showed was transparent rather than the translucent white splatter of cancer. The radiologist explained that that was fluid, that the tumour was breaking down inside itself which shows that the chemo is still working... But for some reason I still feel low..I was so hoping for more and have made myself disappointed - there is a lesson in there...
Tomorrow up early again for my GCSF injections which I will have every morning for the next three days to raise my white blood cell count - I am so very tired of this, so fed up of this process, and utterly fed up with living with cancer every minute of every day. It is my waking thought and my last cogent thought before sleep, I am so very very tired...
Monday, January 30, 2006
My turn again, ladies and gentlemen to host the Real Cancer Real Lives Carnival. This was set up by Cary Miller a caregiver for his wife Lori, who was tired of the relentlessly positive spin that Cancer was given in the media. He, therefore, decided to begin a carnival which would present real excerpts from people who were fighting cancer, treating cancer or just observing its effects on family or friends....
He himself starts this carnival with a post about caregiving, about how if the carers don't look after themselves, who is there to look after the person with cancer? Read his insightful post here.
With the amount of tests cancer patients have to have, we are always on
the look out for bad news... Amanda tells of a midnight phone call and
expects the worst here... Her post gives a real insight into the agony of waiting for results...
Cary's wife, Lori, herself manages to look forward to a new year in all senses in this post here.
Whilst I would be bemoaning the expense in buying a new trash can, Lori manages to look at the turning of the seasons... I hope this year is all you want it to be Lori!
A common side effect of chemo is one that not a lot of people talk about but Jenny does here.
This post made me appreciate the fact that between chemos I can smell and taste the food I eat... I guarantee you will too...
In the UK, we are lucky enough to be treated free of charge at the local hospitals but in the USA and in some countries abroad, one is at the mercy of private health insurance. In this post Josh Cohen tells of an insurance company who believe that cheap pain is better than expensive pain alleviation... Read it here.
And here Hsien Hsien Lei writes of an unfortunate stance taken by an insurance company in response to a brand new drug. Read that here...
Cary has taken the initiative of setting up this Carnival and would love more submissions. Please do have a go. Any post relating to cancer will be considered particularly if it shows the real side of Cancer.
If you would like to submit a post for inclusion in Real Cancer, Real Lives, please do so via the Carnival Submit Form. When submitting your blog entry, be sure that Real Cancer, Real Lives is selected in the menu space provided. If you are interested in hosting the carnival, you can check available dates at the Real Cancer, Real Lives main page...just drop Cary at Cancer NewsWatch an email to let him know which date you'd like.
Technorati Tags: real cancer real lives, cancer, carnival,
Sunday, January 29, 2006
Every touch, every word, every wide armed hug plants a seed in my soul which, sunned by your laughter, watered by the tears I wipe away, grows stronger and stronger. It sends out beautiful wide veined leaves and flowers of all colours of love, of friendship and of mutual respect which echo in your eyes. My darling, darling girls all so special and all so different and yet, each of you so very precious to me...
You will never know how much you give me, how every word you speak, every gesture you make gives me the will, spirit and the pure iron chained guts to keep on fighting... I will not always be here for you, but I will make very sure I am here as long as I possibly can....
Have I told you how very much I love you?
Saturday, January 28, 2006
After 6 rounds though, the winners have been announced and it was a tie between Ravishing Running2ks and Unbelievable Uisce. They beat us all, keyboards down and deserve their huge quota of medals. I, whilst not quite so fortunate have had a lot of fun on the comic sidelines with the Olympic clown David of Sugarloaf Mountain whose antics have made us all laugh...
So Congratulations to Running2ks and Uisce and bravo to Barbara and Lazy Daisy for making the inaugural Blogging Olympics such a success. I thoroughly enjoyed every minute!
Technorati Tags: blogging_olympics, community
Friday, January 27, 2006
1) The most important and I am most ashamed that it had to be an illness that taught me this. Friends and family, the people who support you are riches beyond money. My mother who walks my dog, and does some of my shopping, my brother who accompanies me to every appointment are treasures that I have never seen before. They have revealed to me that family and dear friends are the real lottery, that a welcome hug, a warm word has value beyond any amount of riches....That the touch of a child is the most precious gift of all and that I, with my friends, and my dear family, am the winner of the lottery, yes, even the Euromillions, every day..
2) Live every minute. The way that Cancer impacts most lives is that life becomes bitter sweet. One realises the preciousness of every second which creates the sweetness, but realises that this may never happen again, that one may not be around in 5 years, 10 years or even tomorrow. But then, that is the same for all of us..isn't it? Who knows who might slam into our car on the next corner? Who knows what will happen on the next hump in the road? I wish I didn't have to learn this through Cancer, but you know what? At least, I have learnt it, and once learnt, I don't think that feeling of gratitude for the time I have will leave me...
3) I can do this and I can do it, without working, without a partner, and on my own. I have always regarded myself as fundamentally a weak person, a person who works through manipulation, through passive aggression and by mounting charm offensives to get what I want... When you realise that actually you don't get another chance, that this is all there is, then you go for what you want... I am having a few problems with a plumber at the moment..and rather than stewing for ever, I actually said to him on the phone this morning that I needed him to come when he said he would, that I didn't mind if it wasn't for a couple of days but I needed a definite time and date or else, I would have to call someone else...Not rude, just assertive...and you know what? I LIKE this person, this new assertive Minerva, who knows what she wants and will ask for it... (and right now, that is chocolate...*grin*)
4) I am not remarkable, different or particularly noteworthy. I am an ordinary person, but I have been able to fight this, to rise to this challenge and that, that surprises and delights me. I have always, as I have said elsewhere, been frightened of death. Now, no longer...now I am just worried by not leaving enough memories for my children... I realise that whether I am low or well, sick or in remission, I want to live. I want to live, I want to be there for my children, for my family and most of all, for myself. If fighting is required then I am here, here with my shield, my sword and my armour... Bring on the battle, Cancer, if you dare!
5) All of you...Cancer has taught me that the help and succour that I receive from my blogfriends can be as rewarding as my real life friendships. The outpouring of hope that I received just a few days ago, when I was at the bottom of my dark, enclosed well, really did become the chain that hauled me out. I write, not to share, particularly, but to express my frustrations and my feelings which would otherwise overwhelm me. The fact that so many of you comment, so many of you share my blog with others, thrills me to my core, that by this, I am helping others... And for that, thank you..
6) Who said I could count? Cancer is the best excuse for getting away with anything EVER...When the man with the shopping arrives, 'I would help but I have cancer...'. Getting rid of nusiance sales calls is a breeze ' I have cancer....' and suddenly your name is taken off the list....People accomodate me in any way they can...and I do appreciate that...
So, not heartfelt gratitude to Cancer, after all, I really would have preferred a bout of flu, or the common cold, but there are ways in which it has changed me for the better....
Technorati Tags: cancer, breast_cancer, lessons, learning, illness, gratitude, thankfulness
Wednesday, January 25, 2006
1) The number one thing I hate about this disease is the lack of control. Yes, that may sound ridiculous when actually any disease takes away your control but with this one, I find it even more so. I have my children at some point during the coming Easter holidays but I am unable to plan for it at all..Why?
Well, I don't know yet whether I am going to have a lumpectomy or a mastectomy, I don't have a date for the operation and I don't know the recovery time I need to have as estimates range between 8 weeks and 2 weeks. As my last chemo is the 21st of February and the operation is usually planned for between 4 to 6 weeks after, that lands smack in the middle of the holidays.. Oh, my poor children...
2) The second thing I hate is that you are never free of it. No, the idea is always in one's mind, not always at the front, mind, but it is there, and it stays there... In the morning when I wake up, I have about 2 seconds grace and then, wham it hits me.. I still have it... This is not a nightmare - it is my life... and then I feel it to see if it has got smaller or magically disappeared whilst I was asleep...
Thank goodness really that the tumour is in my breast, for if I insisted on feeling it every day and it was in my colon, I might have to become a contortionist....
3) The way people immediately assume that they have THE answer and then call you up and tell you about it.. Just last week I had people telling me about noni juice, another kind of juice supplement, brazil nuts, cat's claw, and more...Sheesh! If I want to turn into a walking experiment for a juicer or a health food shop, then I will let you know, but please, don't push these things down my neck..or even down the telephone!
4) I hate the fact that as soon as you mention the word 'cancer' the word 'death' crawls into the face of the person you are talking to. In some cases, it is possible to see a full blown assessment of your chances going on between their brows..I mean, please - breast cancer is curable...Don't foist your own fears on me..I have enough of my own going on!
5) But the very worst thing of all is the, 'stay positive and you will be fine', attitude... Okay, let's try this. I will take away all your hair, I will take away any abillity for you to plan your life for the next few months, I will make you feel incredibly ill for one week out of three, and I will make you so tired that you can't work... That means that you obviously have financial worries too, so sorry about that, but you know what, stay positive and you will be fine... Positive?! I am NOT going to pander to the 'optimism' brigade. Cancer stinks - sorry if it isn't what you want to hear, but this is my space and I am putting it as I see it.. Cancer is ugly, debilitating, miserable and a destroyer of lives, morale and bodies...Let me, at least, face the reality of my situation rather than always having to 'put a brave face on ' for your benefit.
Oh, and just incidentally? That doesn't mean it's going to get me...Uh uh..no way... But it does mean that I can face my enemy full on, in bright light, knowing exactly what it is I am facing...rather than being befuddled by rose coloured glasses....
Cry havoc and let slip the dogs of war...... Minerva is on the war path...
Technorati Tags: breast cancer, hope, fight, cancer, think_positive,
Tuesday, January 24, 2006
If they can, I thought, so can I.
And since that moment, since that second of connection, of hope, of emotional sunshine, I too have retaken the reins of my faltering chariot and pointed it forward to the horizon. I have realised thanks to so many of you that this halt that I have shuddered to is only temporary - like a rain cloud, the sun is peeking through the sides, and the occasional ray dazzles my eyes and keeps me going. It will get better, I will feel one day like I am truly living again, rather than existing in this day to day morass of illness, and I will again fill up every minute with over brimming life. My life will return. That, I now believe whereas the day before yesterday, I didn't.
This does emphasise a truth about cancer; it does change you permanently. Never do you take for granted one's life again. One is always aware from the moment of diagnosis that we live, essentially on borrowed time and that bitter sweet realisation is responsible for making us grateful for all that we have, for everyone we know and for all that we are given. Never forget though, that for all that, every single person who has cancer would wish it different. Cancer is ugly, it is debilitating, and it slowly scratches away at the veneer of whom we think we are. It would be easier to deal with if it was sure and swift, and it knows that... No, it is insidious - it slides into one's psyche like a shark and rests there, spreading poison through one's veins, through one's mind, until, like I did, one just wants to flop onto one's back, expose one's stomach and say just have me...take me..
But not here. No, in this corner of the blogosphere, in this little room in the centre of London, this little lady is fighting back... I am not just doing it for me though, I am doing it for every mother I know, for every daughter I know and for all your friends, for all your mothers, grandmothers, aunts, nieces and even uncles and nephews. I am going to lift my fiery torch and enter into that darkness so that all who follow behind have a light to follow.. because, my friends, I am not alone. I may be physically solo but all around me I feel your words entwine themselves around my arms, my legs and my head and carry me forwards. Your words have given me hope and my feet wings...
Technorati Tags: breast cancer, hope, treatment
Sunday, January 22, 2006
Tonight, the mist fell over blue grey hills and it looked as though some giant had smudged the painted horizon with his thumb, blurring the difference between hill and sky. The fields, so french in colour only Friday, looked grey, as though all life had been sucked from them. The air, the sky looked cold, cold, grey black, diffused through smoky glass and the branches scratched high against the dark sky.
I know that I could raise my chance of beating this thing if I exercised, if I ate well, if I went to sleep early and if I took my supplements but something, inside me, just keeps telling me it is going to get me, that this thing will be the end of me... I think a lot of this has come up due to an email I received a couple of nights ago. Meant to help me, this person told me about their mother who had fought breast cancer for 11 years before it killed her, and her doctor had told her that it would always come back.
This just encapsulates all my hopelessness, all my despair and my sense of fruitlessness. Why bother? What, is worth living for, if it is pointless? If it is going to get me in the end, why go through the grief of fighting? My mind keeps telling me to just give up, to lock myself up in depression and throw away the key...
I am obviously going to check this doctor's opinion with my oncologist next Monday as a tiny part of me out of sheer bloodymindedness, if nothing else, just a fragile whisper of hope flutters in response like holding a moth in the palm of my hand. My lack of hope is holding me back like that grey blue smudge tonight, I don't know where my life starts and ends. I just don't know when, or even if, the light, the joy, the sheer exuberance of life will come back.
But even tonight,there was some variation in the darkness. As we crested a hill just before sunset, in the sky were streaks of pink, of orange, gold and red as if slashed by the painted claws of a tiger... I just hope, that like that beautiful, colour drenched sky, hope lies just over the next horizon....
Please, if you know someone who has beaten breast cancer, if you know someone who has not had a recurrence for however long, tell me, tell me so that I might re-arm myself. You can either let me know in the comments here or in an email to me....
My armour is looking thin, my sword blunt and my shield seems to be splintering...
I need your help....
Friday, January 20, 2006
Like them, I am naked of my adornment, like them I wait, wait for the first signs of hair, of life to come back and hug me. I feel that I too am in a waiting pattern for the runway, that it is only when I land, when this treatment is over that I can get going and get on with what I am meant to be doing. I am in transition, in a hiatus, in flux and in a place where I can do nothing but sit and wait.
You cannot be active with cancer: I long to get out my rifle, to clean it, snap it together and go hunting across the plains for the cancer beast. But I can't, I can't do anything active to get better...if only I could. If only, like being overweight, I could restrict my diet, do more exercise and see, every week, the hard evidence on the scales - to have the certainty that by doing these things, I would be killing that collection of cells, reducing it to a infinitesimal crumb that couldn't be detected with a mini microscope, but I can't. No, there is nothing that I can do that will affect my blood cells, to ensure that I am ready for the next chemo, to make sure that that cancer will get smaller and eventually disappear.. and that, that, my friends, is incredibly frustrating.
Like those same trees grasping towards the sky and sunshine and feeling the cold, earthbound set of winter around their roots, I too feel the paradox in my situation. On the one hand, I feel the longing for love, for companionship, for the warm touch of skin upon mine and on the other, I feel the cold slap of cancer and the long journey of treatment. I, like those trees, hold, hold still between the sky and earth, between Spring and Winter, activity and passivity, life and death.
Where do I go next?
Thursday, January 19, 2006
The main organiser of these awards has been receiving quite a lot of snarky comments from participants which is unnecessary in my opinion as it is quite clear that he and his team have been putting in a HUGE amount of work and I, for one, am hugely grateful.
having said all that, the competition is not nearly over yet. The judges panel still have to evaluate all the blogs for their readability, their design support and their content and then the winner will be announced on January 30th. I know that I have put a great big shiny flashing button up in my sidebar but I deliberately didn't push the voting because if I do win, I want to win fairly and justly, not because I pushed for it....if you can understand that.... Now that the voting is on the verge of closing, and the baton is handed on to the judges, I can have my say.
Now, please don't get me wrong - I still want to win but I do, honestly feel like a winner already and this is why...
1) All of you that have voted for me, that read my blog, that leave heartening comments for me here, that email me, have made me feel like I win already. I am just so very lucky to have such a wonderful audience, to have people like you who value my writing, who value me as a fellow human being - thank you, thank you all.
2) I have already received three major offers to contribute to the cause of cancer. It is highly likely that I will say no to all of them *grin* but without the awards, I would never have had the exposure and the offers.... For that, thank you...
3) I have met so many wonderful bloggers and blogs through these awards. Have you met Raehan yet at 'Agog and Aghast?' Not only does she write beautifully, but she is such a wonderful mother to her two girls and her love just flows off the page... Debutaunt who has beaten me on the public vote is having a really tough time of it at the moment with her leukaemia and faces a labyrinth of choices ahead of her... And that is only in the Inspirational Blogs category...The other categories have just as many wonderful blogs in them too...
4) The incredible support that you, as a blogging community have shown to me personally. I have had people cheering my corner all over the net and for that, I thank you.. I am well aware that you all have independent voices and blogs, that for all of us, our blogs are our little corner where we can be ourselves completely and to take up some of your space with a link back to me, or an article is very, very much appreciated. Except I am not absolutely sure if I should be grateful for this push...*grin*
Thank you all, thank you so very, very much,
Wednesday, January 18, 2006
That is exactly what the treatment plan for cancer is like.
If I look forward now, towards the end of chemo too far to the future I feel overwhelmed. I feel that the recovery from surgery, the lack of certainty about whether I am facing a full mastectomy or a lumpectomy, the amount of radiation treatments I will need, the hormone therapy that I will face, the question of how many lymph nodes will be removed is all too much. Like that poor mountaineer, I have to focus on the major crevasse of my surgery, climbing the steep slope of my recovery followed by those repetitive, constant boulders of radiation treatment. It all seems too much when I look forward to the big picture, too long a process to take in, too daunting a journey to undertake.
So it is back to the twenty minutes and back to the present, back to the small steps. I have now completed number 6 of my chemo, for the first time without any sickness.. Obviously, my next goal is chemo number 7 but the spectre of surgery is preying on my mind.
I would be inhuman if it didn't.
The best advice I have had is to prepare for the worst and hope for the best. That is what I am doing or rather, as I am human, what I am trying to do. I am researching the mastectomy and preparing both my mind and my body for the operation whilst secretly hoping for a lumpectomy. I keep looking at images of women post mastectomy and trying to imagine looking at myself in the mirror with the same scar across my breast. I imagine looking down at my front and not seeing the same two bumps that have always been there. I think about putting a substitute down my shirt, about the pain post surgery, about the exercises that I must do after the surgery, about the precautions that I must take not to get swelling in my arm...
And then, then I get overwhelmed. My mind, like that poor mountaineer in that crevasse, keeps going into freefall and I stop, I breathe, I calm myself down, and I reset my goals... Back to chemo number 7, back to being on time for my treatments, back to small, achievable goals...
Step by step....
Tuesday, January 17, 2006
This has two effects on me. The first is that it stresses me out because I feel that I can't do what I want to do right and the disparity between what I see is right in my mind and what I actually get done bothers me hugely. The second is that it feeds into my negative image of myself because nothing I do I consider good enough...which stresses me out ...which means that I feel badly about myself and so it continues..
I talk about this because this week someone has asked me to do something which is a major compliment to me, to this blog, to my writing and which would benefit a lot of people suffering from this awful disease. I have pondered over the request for a while, percolating it in my mind like coffee, allowing all the possible permutations to filter through in the background while doing my usual activities, and for the first time, I am thinking of saying 'no.'
So why am I writing about it? Because I am not sure my reasons are good enough, because I am of a generation that believes that we should give something back, because I am incredibly flattered to be asked, because I am one of those people who believes that we shouldn't leave it to other people to do things and because it would provide a wonderful resource for people whose lives have been taken over by this horrid disease.
Having said all that, this new project would take a lot of my energy, it would take a great deal of my time, and the co-ordination and leading of this project would probably engender some stress. It would also identify me squarely with cancer. I have always said that cancer is a station in my train journey somewhere else. I have always said that I wanted cancer to be something I suffer from, but am not defined by. I don't want my life to be completely defined by the parameter of cancer, but rather, cancer to be defined within the circumference of my life; something I took on, grappled, wrestled with and either beat or surpassed...
To that end, the most important thing is me getting better, of me being with my wonderful children and getting healthy and rested enough to look at going back into the classroom again, to take up my wonderful job with my 'other' children. A source of stress or anxiety, despite its obvious benefits to others, is pointless if it affects my health, I think. After all, being a mother of three children, a secondary school teacher of an Inner London state school, being single and battling cancer is enough to keep me busy, isn't it?
Or is it? I wonder if I am being selfish to others by denying this opportunity and by saying 'no'. Forget four letter words, this two letter one carries much more of a taboo...
What do you think?
Monday, January 16, 2006
But things are changing... I have become used to the feeling of fuzz on my head, but notice, as the days pass, that my scalp is itself not so exposed..that beneath that level of spiky, very short hair, is another layer, a layer of very soft fuzz, an undercoat almost and I hardly dare to hope, hardly dare to even put into words that I think this is my hair growing back... It is so soft, so shallow a layer that I couldn't even try to put a colour onto it. No, because it is almost only by touch that I can feel it, this soft, downy mattress beneath my spiky clumps.
And there, there, in that tiny, personal fact lies one of the eternal dichotomies surrounding cancer.
Yes, I am thrilled it is growing back, I am so pleased that my few months of complete poison have resulted only in temporary hair loss, that I am lucky enough to have it grow back but does that mean that the chemo isn't working? Does the fact that I am not being so sick, that my hair is growing back mean that the effect upon that evil traitor above my heart is diminished? Because, if it is, bring on the sick bowl, fire up the steroids, and get the ulcer cream out again. And that, as I understand so many survivors' writings, is one of the ways cancer changes your life. You are never so blithe, so innocent about the effects of your life again. When you get a pain in your back, you don't ever just think 'too much gardening yesterday', but worry about bone cancer. When you get a cough, it is never a possible cold, your mind leaps into the world of lung cancer.
Once in your life, it changes you, it changes those around you and it changes the world that one looks at too.. Certainly, this means that that state of young innocence is gone, and gone forever. Once you have felt the breath of Cancer down your neck, close enough that all the little hairs go up, you do not forget his shadow.
But it isn't all bad. You remember the fragility of life, you see the value of gesture, of touch and of words, and you see that all the events that normally punctuate a winter's weekend in London are put in a spotlight of appreciation. My nephews' red cheeks as they came in from football, my brother's hug, my sister in law's laughter as we cleared up a mountain of children's clothes, my friends' delicious lunch, all become part of a snapped collage to take out and treasure on monotonous days where the four antiseptic walls and anonymous faces of a hospital become our temporary normality...
Sunday, January 15, 2006
So despite the odd looks occasionally from my family, I have delighted in discussing the Bible with the lady from two streets down who knocks on my door nearly every Sunday and sometimes in between. She usually has one or two of her children with her, who, whatever their age, wait patiently in the rain, or the sunshine while she talks to me. She is, I believe, a Jehovah's witness, or may not be. I don't honestly know as we don't specifically talk about religion. We talk of the bible: she quotes and I listen and I find her faith and knowledge honourable and open. She will give me a leaflet claiming that the sick will be healed or that the meek will inherit the Earth and when I shut the door, despite the initial exasperation I may feel from having been interrupted from some minor task deep in the broom cupboard, I always feel connected and somehow invigorated. That the small engagement of conversation and chat about something which isn't ordinary or mundane is like a refreshing drink or a chocolate bar - a quick spiritual pick me up before becoming, once more, drowned by the voices of ordinary life.
She has seen me change through the Summer where I answered the door in the sunshine, full flowing hair down to my waist, through Autumn, as it fell like the leaves around my shoulders to my stark bare current state, and each time, she is as concerned as any of my friends. Only last week, she had her 15 year old son with her and I offered to coach him with his school work if she wanted me to.. She was touched and said so and we had between us one of those minutes of silence that fill up, fill up with emotion, with a wave of feeling that neither refers to, but both know..
Today, the doorbell rang again. I was tired, and brittle after staying up all night and opened the door in a bit of a fluster determined to be brief. But there she was, and in her hands, a bouquet of flowers of beautiful, vibrant oranges, pinks and yellows that glowed in the dull grey of a winter's day in London when the sun doesn't even come out. These shone in her hands, as brightly as the eyes of her children. She told me she had brought them for me, because I was an 'inspiration', I had taught her to 'keep on going, even when it was hard', and as she pressed the flowers into my hands with the customary leaflet on how 'God shall heal the sick', I nearly wept.
They are still shining now, in a vase in my kitchen, and as they illuminate my dull, winter-drenched home, as they shine into the dark corners of my room, I remember the power of words on a doorstep...
Cancer has taught me that little gestures mean a great deal...
Saturday, January 14, 2006
I mean, I know, for example, that one loses one's hair with chemo but no one told me that one lost the hair there as well...I mean, it never crossed my mind. And if one loses one's hair there, which one does, then does it go from your arms and legs as well? The answer is that it stays on your arms, but it doesn't grow on your legs or your underarms..so if you wax or shave at the beginning of your treatment, like I did , then you are hairless for the rest of it but not absolutely, strangely enough...
You see, another thing they don't tell you is that it does sometimes grow, but only in clumps. On my scalp for example, there are sections where my hair has grown a little so, to be honest, it looks a little uneven. Rather as though a toddler has attacked it with scissors in the middle of the night.
The other thing is that I was guaranteed baldness. My doctor, my nurse, my compatriots all assured me that I would be bald by the fourth treatment. Well, that just hasn't happened for me. My hair has fallen out in huge clumps - yes, that is true, and there are patches where it is very thin, but I have not, so far been bald or lost my eyelashes and eyebrows, both of which I was told would happen. Of course, there are still two treatments to go and people do say that everyone is different.. but I was told I would definitely lose my hair, and that, so far, has not happened yet.
But the other side effect which I wasn't told about has - yes, I have been called Sir twice.. Never mind that I haven't even lost my left breast yet - I have still been thought to be male.. Strange really at the age of 39, with three children, wearing a skirt, to be called a man. I still haven't thought up a great reply - I just make my voice even more feminine and there is usually an apology but again, something I hadn't anticipated.
What else? Ah, yes, the digestive system. Yes, I knew that the chemo would affect fast reproducing cells which naturally included those of my digestive system so I recognised the fact that I might have nausea or diaarhea both of which are recognised side effects. No one told me of the flatulence though! I mean, now I know why it is called wind after seeing the effects of hurricanes. If you or someone you love is going through chemo, seriously, batten down the windows, staple down the duvet cover and connect a wind mill to your house because you are going to need it! Oh, and don't forget to set the volume of all radios and televisions just a little bit higher - it does help the embarassment factor a great deal..
These rapidly reproducing cells are in the mouth too and chemo really does affect one's breath. I went into school yesterday to say hello and kept wondering why channels were opening up in front of me. Strange, I thought, but maybe I just commanded natural respect - HUH! As if! Today my mother stripped my illusions away from me as she offered me not just one, but two hyper cleaning, strip chemo breath mints to ensure that people could get within three yards of me without being asphyxiated either by the flatulence or the mouth breath.
All this though does help world peace. Yes, I know you think that Minerva has finally lost it, but it is true. I have decided that in my current state I will go and offer myself to Iran as the latest eco-weapon. That means, of course, that there is no need for them to go back into the nuclear factories and it creates an arena where my new found talents are appreciated rather than avoided..
A winner all round, I'd say, wouldn't you?
Friday, January 13, 2006
Other people who I think are fantastic and try to check up with every day in other categories are:
Best Overall : Zazzafooky
Best New Blog : Trying To Catch Up
Best Music Blog: Last Girl on Earth
Songs Without Which
Best Mommy Blog: Surburban Turmoil.
Best Sex Blog: Myths and Metawhores
Go here to vote for any or all of these categories.
But to be honest, just go and have a look at all the wonderful writing out there.... It has been a real discovery...
If you don't know how, then learn how here...
Go on, do it, do it now, or if you are in public, do it tonight when you get home - do it in the shower, in the bath, in bed, just please, please, do it...and if you find something, call the doctor.
Please.... spread the word.
Let's have a positive point to Friday 13th....
Technorati Tags: breastcancer, breastselfexam, cancer
Thursday, January 12, 2006
I certainly don't feel inspirational at the moment.. No, I feel actually rather like a barnacle clasping tight to the brow of the ship, I am determined to live, determined to survive by any means I can, and even now feel the rope around my hands tenaciously holding me to the surface. There is no way a pathetic cancer tumour is going to get me... And although I may not be able to open my eyes, (do barnacles have eyes?), to see the horizon and the view, and the beautiful sunsetted days in front of me, I have enough energy to hold on, to hold on to the next horizon, to hold on when the sea calms down, the waves settle, and I am finally able to make it onto the ship, to enjoy the full sail rippling voyage into calmer waters...
*whisper of whispers*
I haven't been sick...once..
DID YOU GET THAT??!!
Do you KNOW how amazing it is to be able to walk around without a bowl at my every step? To look at food that is classified as 'chemo ' food ie ginger biscuits, bland crackers, diluted apple juice and actually pour a cool glass of orange juice instead?
Yes, I still do have the disgusting toilet paper mouth that sloshes with saliva and I am not sleeping which accounts for the 2 posts a day thing..but you know what? I don't care... I am just not being sick...
The end is in sight...
Wednesday, January 11, 2006
And then, like a slap in the face, life does what it normally does and behaves entirely differently. Like the toddler that you expect to have a tantrum in the supermarket who just walks blithely past the sweet aisle, saying ' not today mummy,' I have been left, open mouthed myself.
Naturally, I am glad he is happy...but I think, as always, the way I feel is more about the fact that I think so low of myself. When we split up in July, I thought, then, that I should have a break from men. I tend to fall from one relationship to another, to be passed from hand to hand like a tennis ball, and needed to come down, to think about where I was going, what I was doing and with whom I wanted that to happen. I thought I did, and yesterday, yesterday, the dream dissolved, like soap bubbles in my hand.
Now, I need to disseminate all the things that I liked about that person, that relationship we had together, and put them away, to bring out and compare against someone who may be in my life in the future...
I have to say though that I am still creeping around the house almost afraid to get up properly in case the demon in charge of my stomach wakes up and starts tossing things around like cookies...*grin*
Of course, not everything is perfect. The nurses are coming in half an hour to give me my injections to raise my blood count. Now the decisions become stomach or arm? Strange how the ill can become reduced to dealing with such fundamentally trivial decisions. Sickness is a great leveller, much like poverty or stress.. Even captains of industry, leaders of countries are lowered by them. Perhaps, then, it is how we react in the face of these things that makes us great, not what we did before. It is hard, indeed, to conquer the world when well, but when ill? How much more bravery is in getting up when feeling sick, asserting one's point of view when one's whole body is in revolt? All credit then to people like Lance Armstrong who manage to come back and defeat the well and able bodied, when I can't even decide between stomach and arm....
Tuesday, January 10, 2006
Oh, and the final, wonderful, amazing thing that happened to me today? I am a finalist in the Best of Blogs Most Inspiring Blog award! And it is all down to you who nominated me...Thank you, thank you all so much and I will let you know when they want the votes. *wink*
Technorati Tags: cancer, inspiring, bestofblogs, finalist, breastcancer,
I also want to thank so many of you for giving me stories of hope after the last but one post. I do agree that most of the blogs still standing are those of women who didn't go on to new things after cancer, and maybe that is why there seems to be such a dearth of them. I am so heartened and warmed by your own messages of women who have gone on, after cancer to find love, fun and self-realisation in the rest of their lives...
So, day 2. Normal hiatus before tomorrow which is death warmed up day. I have managed to get up which is a result but not dressed. The dreaded saliva waves haven't come on yet, but the bowl is out ready and waiting for whatever deposits I wish to make... How elegant Minerva...*smile*
I am feeling a little disheartened on the writing front as I have been criticised for being too 'dramatic' in my writing - Read all the comments here and see if you agree...
I am also percolating ideas for the next three months without work in my life. This week I have marking to get through and then? Then the world is my oyster... So far, I am planning on walking the dog, writing an hour a day of my book and catching up on my woefully deficient visual vocabulary by watching all those films I haven't seen... Any other ideas and would any of you like to join me?
Monday, January 09, 2006
Oh and thank you to The Weblog Review who have reviewed me, and come back positive - many thanks!
I figured, as I had chemo today that it would be a wonderful surprise coming back and reading your comments so here goes...
Imagine that you have met me before - tell me where it was and what we were doing...Elaborate as little or as much as you like, and remember,the more imaginative the better but please, keep it clean... I am already dreaming of faraway pagodas.....
Sunday, January 08, 2006
With only three more to go, my mind, like an eager pony, is yearning after the surgery, wondering where, when and how it will happen, and the logical part of me is restraining it, holding it back, refocussing it on the one hurdle ahead, rather than the end of the race. To be honest, a lot of this is because I am afraid that if I look at the road ahead, the end of chemo, the surgery, the radiotherapy and then the hormone therapy, I will just pick up that great big white towel and throw it into the ring. There is still so much to happen, to deal with, and I don't know if I have the stamina to deal with it all - I have to bite it off in chunks and allow one part to digest before looking at the menu for the month...
And it doesn't help with the blogs I have read. Yes, I have read so many inspirational blogs on cancer, and many are on my blogroll. But there aren't many/any of women who have been through breast cancer, survived and moved on with their lives. This week alone, I have read two blogs of women,here and here, initially diagnosed with the same as me, lymph nodes and all, who are now dead. Their blogs are incredibly inspirational and moving but I don't know if I can deal with the idea that like them, who fought just as bravely if not more than I am trying to, it still got them in the end. I seemed to start off so postitively believing my doctors who told me it wasn't about palliative care, but about curing me, and now? Now, I hover in self doubt, my feet are weighed by the mud of care, and I see no clear path through the dense trees before me. I keep thinking about how those women probably thought it would never happen to them either. Is it better to be prepared and ready for death or is it better to be indisputably positive and deny its possibility? I really don't know, I can only keep asking the questions.
But I do know one thing - I do know that I want this blog, this series of intimate thoughts to stand for me, to act as help for future women who are temporarily hijacked by this disease, and when, not if, when I do come through, when these days are but memories, I hope that this blog will stand as a lamp in the forest, a flickering candle to those going through this same process.
Friday, January 06, 2006
I have, though, done more than everyone expected at school. I have shown that having cancer is not necessarily a licence to just give up the job and take an extended holiday. I have tried, tried to deal with this horrid illness by working, but my body, my stamina and my emotions have let me down. Whilst part of me is extremely relieved, half is frustrated and irritated that the job I love is beyond me but twinkling at me just out of my grasp at the moment. That is the key - at the moment. I too believed that going in every day was teaching the kids a lesson about perseverance, that cancer didn't mean that one's life had to stop, but I believe now that I am teaching them another lesson. The lesson is that there is no shame in realising that you cannot cope, that there is no shame in stopping before it becomes a calamity, and no shame in realising that when something like this happens to you, the priority is taking care of yourself, and your children.
That is what I am doing.... and there is ample time, when I return, to teach the kids the value of not giving up, of returning as a cancer survivor, and that people can live, can survive and vanquish this horrid illness..
On with the war...
Wednesday, January 04, 2006
But in with the new school term flow in the same doubts as I had last year. I keep vacillating between carrying on teaching in between treatments, and thinking that I really shouldn't be working as I am not doing it to the standards I expect. Normal requests that my colleagues ask me start spirals of self-doubt and worry that spin in my mind until the next day. Scales tip constantly in my mind - should I relieve the school of the 'burden' of my presences and renewed absences?
The fact is though that, for me personally, giving up my efforts at continuing work would be thoroughly detrimental to my mental wellbeing. Work gives me so much; a reason to get up, a reason to be sociable and something to talk, worry and even think about apart from my health. I really don't want to be one of those people who only talk about themselves and their illness and I can see that happening if I stopped work.
But am I being selfish? Would it be better for those kids if they had a constant teacher rather than one they like and respect for two weeks out of three? With my surgery coming up too, that is also going to be quite a long absence...
Oh, not for the first time, I wish I didn't have a conscience. There are people at school who take off time for the most trivial of reasons and don't seem to have a pang of guilt... and then there is me, who is agonising over whether I am letting the 'kids' down by only being there most of the time with cancer... Or maybe, the tiredness is just getting to me and I need some rest...
I am sure, with time, the answer will come to me...
Tuesday, January 03, 2006
My Christmas tree is going to stay up until this weekend at least, my black cat is positively invited to walk in front of me, shoes are going to live on the table, and I am in the process of finding a mirror which isn't disconnected to the wall to smash. Tonight at supper I will delight in spilling as much of my salt as I can and leaving it on the table where I am going to gloat over it - 'Come on,' I'll say, 'do your worst... Threaten me with cancer, burgle my house, take my car - go on DO IT!' And I shall laugh maniacally at the same time....
Or rather, that is my ideal scenario. Sadly, being only too human, whilst I do those things a part of me, the same character trait that insists on keeping old candle ends, plastic bags and anything resembling a book will be muttering, 'maybe it was going to be worse and being superstitious saved you from a freak tornado in the middle of London, or being hit from above by discarded beer bottles...' (Apparently it HAS happened....)
The same is true of risk factors for breast cancer: I don't show any of them. I had my children early, I breast fed, in total, for over a year ( and that included twins - where IS my medal?) and have no cases of breast cancer in my family, certainly no one in their thirties. Of course, in my darker moments, I think 'Why me?' (said in a moaning, slightly whiny voice reminiscent of a 3 year old..) but recently I have managed to turn it around and tell myself to imagine how young I WOULD have had it if I hadn't done those things...
That, of course, then makes me look lucky so I think, just maybe, I better take the christmas tree down and put the mirror back....
Sunday, January 01, 2006
I don't know what 2006 holds, this may be the year that cancer disappears for ever, this may be the year that I remember cancer getting stuck in to the main meal of my body after the appetiser of my breast, what ever it is doesn't really matter that much. What matters is not the passage of time but the way we deal with it. A year ago I was wishing my life away, was always looking forward to the next holiday, the next rest, the next festival. Now I live for today. I don't live in years any more but in days, in hours and minutes. I wake up each morning living in today, and that, if anything is my only resolution for this year. 2005/6/7 has no reality for me any more as after my diagnosis in September I can no longer assume that I will necessarily be there... Neither, to be honest, is it important.
What is important is that every day, like another bottle of wine, a new memory, a new bout of laughter, a shared tear is laid down, like a fresh vintage ready for another family, sometime in the future to bring out and pour over and share. I have no power over the future, but I can leave memories, laughter and love for my children today, tomorrow, and tomorrow... Here's to the vintage of 2006...