Saturday, December 31, 2005
One of the most exciting things about expecting a new guest, of course, is the hope that one won't make the same mistakes. I wanted to do so many things while 2005 was here and I only got a few of them done. I did give up smoking which was the major one, but my efforts with entertaining and extending the hand of hospitality to friends didn't work. Maybe they will with 2006. We shall have to see....
The table is laid, the bed made up with fresh towels and breakfast is in the fridge for tomorrow. Now I just need to wait for the doorbell to go and lock the back door after 2005... Ahhh...is that him now?
Friday, December 30, 2005
I thank you all for that.. I am not going to mention you all by name because I would hate to miss anyone out and I really am grateful to all of you. Of course, there are some of you whom I know outside this corner and you know how much your support has meant to me this year. But this? This is for you, for all you internetters that I have met in this corner..... Thank you...
Now the memories...
1) Stepping outside our holiday villa in Spain in the morning with the mist just lifting off the damp, earth bound fields. The vapours rising, like smoke, from the grass and the crisp, damp smell of dew under my feet. The orange terracotta of the villa, of the patio contrasting with the rich vegetable greeness of the grass and over all, the milky sunshine just rising beyond the fields.
2) Cheering on our team on Sports day at school. There is one boy in my class who is on the verge of being expelled; he is rude, disruptive and has attitude seeping from his pores. He is also a beautiful runner and as he ran, rhythmically around the track, his name was chanted by every one of the other boys in my tutor group. We dominated the cheering for him and he wasn't first, I don' t think he was even second, but we, as a group of disparate personalities bonded in that moment. I still remember chanting his name staring into the faces of my eleven and twelve year old tutor group, all of us echoing each other's idiotic smiles and somehow, in the ether between us, the fragile bonds which will keep us together for the next four years were formed.
3) The moment that I told my ex-husband's new wife that I had cancer and suddenly, the pathetic games that we both were playing became insubstantial, feathers in the breeze as we realised what was really important.
4) The moment that the burglar locked me in my house and I broke down. I have always thought of my self as composed, sophisticated and civilised but that moment.. that moment was different. That moment was one of raw fear and anger, open and honest to the elements, a moment that is rarely felt but where one is no more than the emotion itself. I was no longer a woman, a mother but a seething pit of anger, fear and rage....
5) My children's bravery as I told them about the cancer. The renewed bonds that we have as a family due to this awful disease. The fear, the love and the laughter that we have discovered since then. Cancer is a terrible thing to have happened; it is also something that this family, at least, have swallowed, digested and are prepared to spit out with vigour and verve. My daughters are magnificent...
6) The moment I began my book. The moment when a dream, which had been a dream for so very long finally became a reality. Whilst half of my brain was writing, the other half was admiring the scrawls across the page, the strokes of the letters as they moved - a dream was becoming concrete....
And there we move full circle. Concrete support to concrete dreams. Dreams which do not slip through the fingers like water but cling and change to solidity and shapefulness... I wish you all a very concrete end of year, where the dreams and echoes from 2005 finally become solid realities ready for action in 2006.
Thursday, December 29, 2005
I too hang, hang between fear of death and recurrence, and thinking that I am beating this whole thing. Yesterday I met, for the first time for ages a dear friend who asked me how I dealt with the fear of death, the fear of mortality and what my prognosis was. The first thing I had to say was that no one truly knows my prognosis, no one knows whether I will be cured completely for ever or whether I will struggle along, limp along my cancer rock strewn road and then fall over onto the verge and give up. No one. Sure, there are hundreds of statistics out there and they don't all make pleasant reading. Sometimes I read that I have a 50% chance of making 5 years and that scares me stupid. I think of not seeing my 12 year old make her 18th birthday, of not seeing my twins make their 16th, of not being able to help them with their GCSE exams at 15, but then I read something else that gives me 85% and I breathe out....
The truth is that there really is no truth. Just like history is just a man's story and the truth is lost between different people's stories, so it is with this disease. All statistics are
1) historical. They are based on studies and treatments which were the latest then but aren't now. There is no data on what MY chances are.
2) include all ages/sizes/varieties of women. Some may be older, some may be younger, some may be fitter and some may be less fit. The statistics for a woman of my age, my health and my type are probably better.
3) are not rules. We all know the man who smoked 60 a day and lived to 95 just as we know the man who didn't smoke at all and died early. Rules and statistics are made to be broken....
But when one is faced with the actual fact that one may die, it is strangely very empowering. Death itself now isn't scary as I know how or why it may happen. Of course, if God has a very sick sense of humour that he may have me run over on the way to chemo or something, but otherwise it is probable that cancer will get me in the end. I do have a high risk of recurrence because my lymph nodes are involved but for some reason, death, when it was far away on the motorway scared me. Now it is finally in my garden, it doesn't scare me half as much as it did. Death as a complete stranger was much more disturbing than it is now, for it has shown me its face, shown me the pores on its cheeks, and looked me in the eyes. I can see what or how my death might happen and somehow I can deal with that; I won't feel anything, and I will just slip away from this life preferably with a lot of morphine in my veins. Oh, no, not a problem for me....
But for those I leave behind? Oh God, that is what scares me now.. The thought of not seeing my daughters grow up, the thought of not writing my book, of not seeing the boys that I teach through their exams, through their achievements frightens me, the thought of not giving back all that I am currently taking from my friends, my family and my pets scares me.. But strangely, it doesn't scare me like death used to, making me cry and shiver under my duvet, it makes me resolute, it makes me grit my teeth and fight. I am armed, armed to the teeth with a sword of determination and a shield of mental spirit and I will fight, I will battle, and you know what? Even if it does get me, it will NEVER win.
Wednesday, December 28, 2005
6 months ago, I started this blog...
6 months ago, I wrote an entry on the birth of my daughters .
6 months ago, I had the whole summer, like fresh sheets on a bed lying ahead of me.
6 months ago, I planned my holiday.
6 months ago, I was in a great relationship with someone very special.
6 months ago, I took my life for granted.
6 months ago, I was terrified of dying.
6 months ago, I was awful at making calls or answering them.
6 months ago, I was afraid of being alone, of being single and of dying alone.
6 months ago, I took my children for granted.
6 months ago, I spent every day looking forward to the 'great' future.
6 months ago, I started to plan my birthday.
6 months ago, I had long thick blonde hair down to my waist.
6 months ago, an intruder was growing in me, cell by cell, unknown, unfelt, unheard.
Now, TJ the gorgeous girl, nominated me for 'Most Inspirational' in the Best of Blogs..and I am touched and thankful, all at once!
Now, I am single.
Now, I am alone.
Now, I have started a book.
Now, I have a different car.
Now, I have been burgled.
Now, I have experienced loneliness, self-pity, fear, love, hope, confusion and clarity.
Now, I don't take my children for granted.
Now I treasure every moment I have with my family.
Now, I live for every minute I have here.
Now, I have a shaven head.
Now, I am working on my phone relationship.
Now, I am not afraid of growing old.
Now, I am no longer afraid of death.
Now, I am not afraid of being alone.
Now, I am not afraid of being single.
Now, I am not afraid of cancer.
Now, I know the power of children's hugs.
Now I am only afraid of not finishing what I am here to do...
Now, I am
Tuesday, December 27, 2005
But back to the weather... Our day began frostily with snow falling outside and a massive tantrum from Twin1. Yes, true to form, twin2 had, deep breath here, laughed AT her..and twin1 hit twin2 and then proceeded to stomp to her bedroom, slam her door shut and throw herself, in time honoured family fashion, on her bed so hard that the base thumped against the wall... Given that I was in the process of preparing the chicken which really was about to go off if no one ate it, the parsnips that I had bought in a fit of pervy parsnip passion and the organic potatoes that were looking already a little green around the gills, I thought the best scheme was to completely ignore her and let her cool down.
By the time lunch was ready, roast chicken, perfect parsnips, potatoes, broccoli, gravy, and, of course, redcurrant jelly, the sun had started melting the snow outside, and the sunshine was back inside too... We had such a lovely lunch. We had crackers - the really, really cheap ones that are made of tinfoil that has been specially designed to scrunch up into really, slippery handles that make pulling one without toppling a glass a miracle. Because I had bought 24 in the sales last year, we had more than three each which was excellent as the table rapidly became covered in tiny plastic puzzle racing cars, very silly old jokes which we all laughed at, and numerous wordgames which we puzzled over. We had such a wonderful time, that in a fit of universal levity we decided that we would start a family tradition....
From henceforth, the second day after Christmas in Minerva's household is to be known as 'Peace' day. Pyjamas are 'de rigeur' and it is a day where chocolate gorging, tv watching and playstation communal games are vital to the celebration.
Today,we were all still in pyjamas for lunch, and we rested, relaxed, watched television, and laughed a great deal.. After lunch, though, the true miracle of 'Peace Day' occurred. Yes, I sat down and watched Nearlyteen, Twin1 and Twin2 tidy up my kitchen. They washed up, they cleaned the table, they loaded the dishwasher as well as washing up the heavy pans, and they dried up too. I cannot tell you how special that was - just watching these three gorgeous girls, creations of my own flesh and blood, rushing around that kitchen, cleaning it up for me. It brought back my memories of Christmases past in my grandparents' kitchen with the family decamping to the kitchen after lunch to wash up together and laugh about the day. Have we lost something with our new appliances? With our dishwashers? My dishwashers today weren't all that efficient but they were marvellous entertainment, beautiful to watch, and in the theme of this Christmas in particular, I felt the tears of pride around my eyes as I watched them.
'Peace day could have ended up either way - a day of peace and tranquility or a day where I and half of my kitchen would have been in pieces... Piece or peace? The whole day spoke to me of family, of disagreement, of making up and of forgiveness... Who says Christmas is only once a year?
Happy Peace Day,
Monday, December 26, 2005
Having said all that, I have to say that this Christmas is my best Christmas ever.. I don't know what it is; after all the family and friends are still the same so I can only say that it is the change in me from this cancer that is working the miracle..
For the first time, I looked at one of my relatives against whom I have held grudges since I was a child and I could see the reality, the emotional impoverishment, the loneliness that pervades her life, and I felt ashamed, ashamed of my previous hatred, for I could hate no longer, but let it go, let it go with the bitterness and shame of my life before, and could like her for the woman I saw rather than the role that I resented...
Tears were very close to the surface this Christmas; the moving faces of those who mourned their dead on Indonesia's beaches and Thailand's shores today moved me deeply; the amazing card game we had on the floor today at a friend's house where adults were just as involved as the children brought out the prickling of my eyes; the open arms of my nephew as he opened my present and said, 'I love it', and the innocence of the other nephew who opened just one car and ignored all his other presents but played 'Motorway jungle' behind the sofa for an hour moved me...
As I thanked both my brother and sister in law, and my friends today for their wonderful gathering, again the tears gathered ready to fall and a great fullness came over my heart and body as though I could burst... I hope that I can carry this thankfulness, this sheer and utter gratefulness around with me like a briefcase so that in the harder days, the sicker days, the more bitter days, I can open it like a holiday leaflet and let it sing to me of love's warmth and kindness...
Happy Boxing day...and don't forget to put the rubbish out...
Sunday, December 25, 2005
Upstairs, three children dream, dream under their duvets with various animals scattered between the three of them, of their presents under the tree ready to be unwrapped like sweets, of arms surrounding them and always holding them tight, and love, love like a soft fleece throw always keeping them warm , holding them snug in the cold gusts of life's unpredictable weather. How I wish I could always be there for my children, to guide them when the rocks begin to show under the clear water, to show them the way to the inner reefs and pools where the soft sands wait to delight them, and the warm waters to cushion their falls. I have no immortality or great might to give them, only the certainty of my love for them, and the absolute joy and pleasure that they give me, and will always give me for as long as I live.
Last night, I read the powerful and moving diary of a woman who believed in love, children and family and the joys of giving. She gave her life to breast cancer and is still much loved and regarded. Tonight, as I write this, her children are going to sleep thinking of their mother who can't be with them... Tonight, as I write this, waiting for my beautiful children to fall asleep so that Santa can finally come to London, I know how blessed and lucky I am to be able to know the great love I have around me and just, to be, to be with my children, and my family. I will never forget these wonderful days.
To all, around the world, a very Happy Christmas, and may the same warmth, joy and love be around you today, to keep you warm when the winds turn cold, and the world turns frosty. Keep safe, keep warm and keep loving,
Saturday, December 24, 2005
Unlike the one I have this year,
but with children's kisses,
and champagne's fizzes,
I'll stumble through the day somehow...
I'm dreaming of a sick free Christmas
when I can fill my face with food,
with turkey stuffing, and children laughing,
All will be wonderful and good....
I'm dreaming of a lump free Christmas
Where I thank God that I'm alive,
To hear excited giggles
and smiling whispers, and know...
know that we'll survive....
Friday, December 23, 2005
The little trembles in my stomach are growing at the thought of Christmas, and my gorgeous girls arriving tonight. I simply can't wait to see them, to hear their excited bubbling about their 'Christmas day' spent with their father and step-mother, and the ways they are going rush into the house and start unpacking the box of Christmas decorations and just chatter at me all evening...
That is when my Christmas will begin...
On a side note, M and S are known in England as a well known clothing brand and today, in the post, arrived exactly what I had been looking for but from a different M and S. A glorious, red woollen hat with a soft fleecy inside to cover my ears.. I was so touched...The note read ' ...read your blog about you wanting a hat...' and this morning, dressed in my pyjamas, there I sat, with tears running down my face in joy and thanks... Thank you to you both for showing how thought of I am, how appreciated and how people don't just read, and comment but act... I am so very very grateful.....
It is thought, and wishes like that that will make this Christmas unforgettable and to all of you, who have helped me, supported me, and just been there for me this year - thank you... thank you from the mother, the friend, and just me,
Tomorrow my wonderful kids arrive and you know what? This Christmas is not about me, is not about you or even Mrs Chem... but about family, about being together, and about children. I want you, all signs of you and yours to just leave me for a few days, so I can forget about surviving, or illnesses or other horrid questions but just live, live in the right now, the moment... So that I can feel the kiss of a child, see the twinkle of lights on the tree reflected in crookedly hung ornaments, hear the excited rattling of a present as one of my daughters tries to guess what is in the package, and smell the warmed up mince pies in the oven. That is what I want for Christmas - no packages, no paper for my gifts thank you, just the hugs and warmth of family and friends, and a christmas with no cancerous shadow, no chemotherapy nausea, and no frightening questions... Those can all return like hyenas at the door in the New Year...but for this season?
Just make it normal....please?
Thursday, December 22, 2005
Needless to say, the drugs aren't working. Not today, anyway as anytime I try to take them, they just come right back up. Something incredibly ironic about being sick with anti- sickness drugs - even my conventional standbys of 'fat' coke and cream crackers aren't working tonight....
I also feel like I have been run over. Now this, this is strange. I have not engaged in any kind of mud wrestling, lorry lifting or anything else strenuous and now? Whenever I put my back, my neck or my arms against anything soft, it hurts - hurts like, like...well, being run over I guess...
Clearly, I lead some kind of fantasy life in my dreams and shot across the Grand Canyon on a bike, landed badly but didn't remember it....
Enough already of raving incoherence - churning stomach and hurting head dicatate back to bed - I have also had enough of staring at christmas cards nagging me to write them and presents demanding to be wrapped...
I am off to hide under my duvet...
Wednesday, December 21, 2005
Read this - and then you will understand what I am talking about....
Remember my burglary and the car they took? Yes, that was my car, and he didn't leave in HIS car, no, ladies and gentlemen - it was mine.. Now the question is, was that man who came into my house, who stepped into my bedroom while I was sleeping there and who then locked me in my house and left in my car, was it the same person?
Because, if it was, and it is a big if, I mean, he could have found the keys on the pavement couldn't he, then, I am a very lucky girl to still be around and alive....
Mind you, with all the very handsome policemen who have been around at my house taking DNA samples, fingerprints and inspecting my bedroom, I'm not complaining...
Having had three lots of plain clothes policemen in one day though I am wondering what the neighbours are saying.... *wicked grin*
Tuesday, December 20, 2005
And, I suppose, this is the crux of this post as cancer can, in fact, be very useful. "Useful?!" you shriek...Minerva really has lost her head..but no, not at all. Apart from getting rid of nusiance sales calls which really is a boon namely
"Hello, is Minerva there?"
"Can we interest you in a new mortgage rate for your house?"
"This isn't a good time to call."
"Oh, why? ", marginally belligerantly....
"Well, I have cancer so don't know if I will live 5 years let alone that long".
Silence, and more silence....
"So sorry to trouble you, goodbye."
And I grin as I put down the phone... YES, I do know that this is unscrupulous but it makes me laugh and you know what? It is about time those people had their comeuppance....
3 o'clock in the afternoon...
Council canvessers come to the door. "Could we talk to you about the council?"
I am still in dressing gown and pyjamas - "Sorry but I am just resting...and it is really cold on this doorstep." Large yawn for effect and stroking of bald head....
"So sorry to bother you ..."
Shut door and happy Minerva...
At school, cancer is an excellent tool... To huge 16 year old boys who tower over me and won't take their hats off in the corridor - " Come on, I have less hair than you do and I 'm not wearing a hat...."
Oh and I got three parcels delivered out of office hours, a bouquet of flowers from school and my family are all around me...
I think I am incredibly lucky... - now, if only I could figure out how to make the cancer go away completely when I don't need it.... Anyone got any help to offer with that?
Monday, December 19, 2005
Today, in hospital, seventeen years later, I raised my tablets to him. Remember the scenario ladies and gentlemen? I have my beautful children arriving on Friday so I purposefully moved my chemo session two days earlier so that by the time they arrived, I would be through the worst... I also got measured and was found to be hiding 50% less cancer than I was at the beginning of the treatment but was still told last week that I was moving to a better drug...
We see the first doctor, a young registrar, who explains that I will be moving to this new regime due to a lack of clinical response as agreed in the medical team meeting. I then point out to this young man, that ACTUALLY, my response had been quite good, ie, in the 50 % mark and point him to the actual results there, just in front of him, on his computer.... He reads, looks perplexed, and then asks us to wait until his boss comes in....
The boss does, about 1/2 an hour later, flushed and hurried due to traffic problems. He then explains that the radiologist in the meeting last Thursday in the team situation yadda yadda told us of a lack of response between the three ultrasounds... I then point out the following
1. my tumour shrunk by 50 %
2. my nodes shrunk by 50%
3. I have only had 2 scans so what were they talking about?!
He then looks at the results and agrees with me...Why on earth were they moving me off a treatment which was clearly having a great response to a drug with greater side effects and no guaranteed response? So, naturally, knowing that he needs to cover himself, he goes into the next door room to check with the Professor Consultant...and returns...and my world falls apart.
'We need to discuss this as a team -clearly there is some kind of error. We will discuss this on Thursday in our team meeting and you will come in on Friday for treatment...'
I turn white, feel tears pricking at my eyes and for once am speechless... My girls arrive on Friday. The worst day following chemo for me is two days after when I am very sick which, of course, would be Christmas day..... Surely...surely no one would be that cruel...
And then, the voice of an angel... a slightly gravelly assertive, measured angel also known as my brother - 'That is not an acceptable solution to us. It was not our mistake and, in fact, without Minerva's attention, this error would not have been picked up. By moving it to Friday you are punishing her three fold - she rarely sees her children, she will be ill Christmas day and has knocked her planning to bits. This is not something we agree to.'
Again, we waited outside, again the doctor went in, and finally, I proceeded up to the chemo suite to greet my old friends FEC....
So to those who don't pay much attention to their measurements, their care plans and regimes, please, do...please check...This is your body, your life on the line and the only one who will pay the ultimate attention to it is you.. They are wonderful professionals, but they are tired, and human. Make sure that you know what is happening to you... Without my full knowledge of my current tumour size, I would have been moved to another drug with no check or balance as the person who announced my results had clearly muddled me with someone else...
Oh, and the funniest thing of the whole chemo? On the tag bracelet that they gave me with my name and birthdate to check the medicines against, I said my birthday 23/09/66 - my bracelet said 23/09/36... Wow, I am looking good for 70.
Never assume anything - take control.... Your cancer, your treatment, your life...
Be prepared! That's the Boy Scout's marching song,
Be prepared! As through life you march along.
Be prepared to hold your liquor pretty well,
Don't write naughty words on walls if you can't spell.
Be prepared! And be careful not to do
Your good deeds when there's no one watching you.
If you're looking for adventure of a
new and different kind,
And you come across a Girl Scout who is
Don't be nervous, don't be flustered, don't be scared.
Lyrics by Tom Lehrer.
Chemo today..the last before Christmas...so I need to be organised.
Sick bowls - 1 upstairs by bed - check.
sick bowl - 1 downstairs in living room - check
Bathrooms are built for it anyway and the kitchen? Well, the bin will do...
By the bed we have: extra phone, if I want to pick up;
box of cream crackers for when I can't stomach anything else;
A bottle of 'fat' coke, as it is known in our family for rehydration;
A box of all the anti-emetics (anti-vomming meds) my house has currently comprising domperidone, (2 every 3 hours,) dexamethadone, (4 in the morning and lunchtime), Cyclizine, 2 every four hours or for ad hoc nausea), granisetron - the miracle anti-emetic to take for three days, once a day, suppositories, (up to 6 a day if I can't stomach the pills,);
Difflam, for mouth ulcers, by my tooth brush and paste;
sleeping pills for when the steroids mean I can't sleep, and anti-depressents for when I can't get up;
anti-anxiety drops for when I get worried I can't sleep or worried I can't get up;
my mobile for keeping in touch;
my laptop for blogging, if I can;
and my christmas cards so that I can write them just in time for christmas....and then send them afterwards.
Oh and a couple of extras too... This chemo apparently will make my bones ache and as I will have daily injections to raise my blood cell count which also do that, I need paracetamol too...
And this is the girl who never took medicines, and never got sick...
(makes me laugh, in a kind of slightly bitter, ironic way)
MERRY CHEMO EVERYONE!
Sunday, December 18, 2005
The cubicle was a small one, and for once, was entirely surrounded by mirrors which I thought would be useful. There is nothing worse for a woman than thinking one looks great in something and getting out, catching a flash of one's derriere in a mirror and realising that a bright red double decker bus is less conspicuous.
When I tried the things on though, a shirt and a skirt, I was stunned. Stunned because in new clothes, I didn't recognise myself. All I could see was my shaven, balding head and there was no escape. I looked in the mirror and saw an ostrich looking back at me. The spiky hair, the long expanse of skin between my face and the beginning of the shirt. I saw the bald patches behind me, the shape of my ears, the lack of hair around my neck and the strong outline of my scalp beneath the fuzzy shadow of hair on my head and I was shocked, genuinely shocked. Who was this woman looking back at me? It just didn't look like me, like the me that I am used to, like the me that I know I am or rather, that I knew I was. I lost myself, my essence, the very heart of me in that changing room yesterday. I did not know who I was and still the repercussions hand over me - I still do not know who I am. Whilst I may feel like me, like someone, like the person I used to be, inside, I look outside and have a stranger staring right back at me...
This cancer has not just taken my hair, it has taken my self-esteem, my confidence and my looks....
Who am I?
Saturday, December 17, 2005
But lest you turn right round and go back from where you came (which would not, I suspect, please your mother) let me also say this. Our world is also a world of hope, a world where a poor man may become a leader, and a woman on a bus a torch of pride for millions. A place where thousands donate their pocketmoney for people they have never met, a place where hundreds express love and give hope over the internet, a place where tolerance and charity thrive. A place where the power of the written word is able to stretch across wires and beyond the narrow grasp of politicians and governments, where to be an individual is the most powerful thing of all...
Welcome, Emma, to a wonderful world - a world of hope, of love and of a bright future. May you grow to give more to this world than you take, may you hope more than you despair and may you love more than you hate...
Friday, December 16, 2005
I have another maximum of six chemos to go. Now, that may sound like not a lot but, you see, I had just conquered the last set. I knew now, what to expect and with Christmas coming up, that meant a lot to me. I knew that I would be ok on Monday and Tuesday, with an awful day to be expected on Wednesday and that on Thursday, my spirits would be soaring up as my stomach's contents sank down. And now? Now with the change of chemo to be had on Monday, I am a sailor who has just discovered that her safe boat has become a leaky barge. It may be that I sail through it, but I may also founder on the reefs of nausea, or go down on the rocks of dehydration and sickness...I just don't know which way the wind lies and I hate that...
What requires most head banging is the fact that it is not the illness that is making me feel ill. Cancer, to be honest, has NEVER made me feel ill - no, it conducts its business internally, quietly and covertly and it is only the treatment which makes me sick and debilitates me, both physically and mentally. Think about that for a minute - imagine that you have a really good day so you decide to take a drug and that drug makes you feel ill, saps all your energy, takes away your looks and your self-confidence, you wouldn't want to continue either, would you?
Tonight, when I got home from school, I couldn't get out of my car.. That isn't 'wouldn't' - that is 'couldn't'. I, physically, did not have the energy to open the door and swing my legs out. I had to wait, wait staring out of the windscreen, wait for my body to gather its tired cells together to lift me out...
I am so tired....
Thursday, December 15, 2005
Strange to be changing. That old phrase, better the devil you know resounds in my ears. I mean, it may have made me very ill, but with the drugs from last time, I felt that I had it tamed. Sure, I was still ill a couple of times but one expects that with chemo - I mean, otherwise it would be like looking after a very young baby with no night disturbances. Same process but one almost feels disappointed..... And, before I get attacked by parents, I did say ALMOST.....
So schedule changed once more...different drug, different side effects.. Although I am not good with change, I am very grateful that the doctors are reviewing my case and do have my best interests at heart...
Definitely blessed...I think..(trying to look on bright side)
Wednesday, December 14, 2005
I woke up at 6.30 am Thursday morning......
Holidailies, please forgive me....
Tuesday, December 13, 2005
My family and I have just received the best Christmas present of all. It wasn't wrapped, it wasn't delivered with fanfare, no cards, no labelling and no ribbons but rather, in a darkened room in a run down hospital in the middle of London with two strangers.
My tumour has shrunk; shrunk by a massive 50 per cent as have my lymph nodes and that is just after four chemotherapy treatments. Exact measurements? The tumour was previously 2.9 cms by 3.3 cms and it is now 1.9 cm by 1.6 cms. The nodes, previously 2.9 cms are now 1.4 cm. I am dancing inside in full carnival costume and I can't keep the smile off my face.
Cancer? You so picked the wrong person, the wrong family and the wrong body to attack because my forces are out. Ladies and gentlemen, we have turned the corner and are heading towards the home straight. See that little thing in the distance? That monster that was, has turned into a midget and is still shrinking. Nowhere to run, nowhere to hide.... and, dare I say it, thank you?
Thank you for the best present I could have asked for.....
Monday, December 12, 2005
I told you to think,
I told you this chemo
was making you shrink.
You said no and you stayed,
You said you were a giver,
But I secretly knew
you wanted my liver.
You said that you wanted
my body to tame
but I secretly knew
you had plans for my brain.
You said that my lymph nodes
were just part of the act,
but I secretly knew
you were after my back.
Well, now you've gone wrong,
and the chemicals are killing,
It isn't me who is dying,
but your grave they are filling.
So go now, dear Cancer,
and get out of my breast.
I've had enough trauma
and could do with a rest.
It's time, O dear Cancer,
for you to leave,
I don't think I will cry,
I don't think I will grieve
but instead I'll be grinning
all over my face
At the thought of you leaving
with your cells in a case.
Sunday, December 11, 2005
Yes folks...roll up, roll up to the Ninth Carnival of Real Cancer Real Lives. Started by Cary Miller at Cancer NewsWatch, this carnival aims to debunk the popular media cliches of cancer by showcasing real excerpts from patients, caregivers and any other cancer connected blogs.
As regular readers know, I am fighting my own battle with cancer. Diagnosed with breast cancer in September at the age of 38, a single, divorced mother with three children, I have often doubted my own strength in coping with a life threatening illness and treatment that is often as detrimental to one's quality of life as the cancer itself is. What I have actually discovered is that reading posts by cancer survivors and their caregivers is incredibly inspiring with the courage and humour that they use to face the future as well as reassuring when they share the same fears and worries that I have.
Blogs By Cancer Patients
Cancergiggles gives us a very humorous view of scans, chemo and the process of intravenous injections with all the possible alternatives. Read it here.
As cancer patients, we are aware of our own mortality, and with that comes a heightened awareness of the world changing around us. Lori, in a poetic post, looks at the seasons changing around her and compares it with her own renewal. Read it here.
Jenny currently going through treatment for stomach cancer talks of the side effects she is getting from simultaneous chemotherapy and radiation therapy. Talk about bravery - read it here...
And just to really get us in the carnival mood here is Aeryn's post as she receives the news that every cancer patient longs for.... here.
My contribution to this carnival is a post I wrote only a few days ago - an open letter to my children. When I told them I had cancer, my youngest daughter said that Christmas would never be the same and would be ruined by having a bald and cancer ridden mother. This letter attempts to show her the other side.
Cancerbaby in a very moving and yearning post writes about her impending two year anniversary of her diagnosis and how being healthy seems like a long forgotten dream...here.
Blogs By Caregivers
Being Made's mother suffered from lung cancer and in this post she maligns the media and the gullible who only see the side of lung cancer connected to smoking and forget the tragedy of suffering and grief.
Amanda's husband has leukaemia and on discharge from the hospital, Amanda talks of all the precautions she was told to take by the nurses in a hilarious post. My personal favourites are number 5 and 6. Which is yours?
Cary, the originator of this carnival, has written one of the most poignant posts about cancer diagnosis I have ever read. A honeymoon is usually a time of physical discovery but not in this sense.... Read about it here..
Could we give cancer cells cancer? That is what a small pilot study is trying to do. Read about it here.
Real Cancer, Real Lives Needs You!
If YOU have enjoyed reading this carnival, please consider hosting it yourself. Cary and Lori have been an inspiration to cancer sufferers and their carers all over the net. Can you help and give something back?
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.
You can take a look at some other great carnivals over at the TTLB UberCarnival page.
Real Cancer Real Lives
Saturday, December 10, 2005
twelve months of treatment
eleven nurses pricking;
ten weeks of radio;
nine pills a-rattling;
eight ty per cent of living;
seven ty per cent of puking;
six blood cell injections;
five I veeesss;
four breast exams;
three different doctors;
and a course of chemotherapy.
(as well as a very silly sense of humour!)
Friday, December 09, 2005
For the first time, mortality has crossed our doorstep. Usually, the nasty things happen to other people, don't they? But this year they are happening to us. Your mummy has an illness, an illness that may threaten her life, our car has been stolen and there were things in there that you miss and our dog, is, for the first time starting to show his age. He is sleeping more, seems not to be as alert as in the old days and you, yourselves, have all started on your great journeys through life.
I know that you are concerned that these awful things that have loomed out of the shadows will colour our Christmas, will mean that this season of jollity and 'fun' won't be like before, and I am sure that you are probably right, it won't be like before. But it isn't going to be worse - no, it will, in fact, be even better. Better because Christmas, apart from being about pagan festivals and the birth of Jesus, is really about thought. It is about not taking each other for granted, about appreciating each and every person we come into contact with by giving a present, sharing a drink or meal, or just simply saying 'Happy Christmas'.
And, my darlings, that is what our family does. Every time I hug you, I am shouting to the world that I love you, every time I call you, I am telling you I am thinking of you. Every time I spend time with you I am telling you that I am so very proud of you, love you so very much and that without you, without your hugs, without your love and your kisses, my rainbow splattered world would be a cold, monotone, grey place. And your gift to me? With you, cancer doesn't frighten me, death doesn't sting me, and the pale, cold shadow of illness doesn't even touch me.
How can this Christmas get any better than that? The knowledge that my arms are always there for your hugs, that my shoulder is always there for your burdens, and my hands are always there to wipe away your tears. Christmas is about thought, about giving and ultimately about love. With all that has happened to our family in the last three months, and the love that has come out of it all, our Christmas is going to be the best ever.....
I love you,
Selected by the judges as an exceptional Holidailies post.
Thursday, December 08, 2005
I am writing to you as the tenant in your left 'balcony' apartment. As we have been dealing with you through an agent, namely Mr Body, I thought I would take this opportunity to introduce myself to you personally. My name is I. D. Carcinoma but all my friends call me Cancer or 'Big C' for short and I, and my family, moved into this extremely spacious terraced apartment about six months ago.
Initially, we had no problems at all. Things were quiet, so quiet that I and my wife, Negligence were able to procreate at will and, boy, were we at it! In just a month, we had had squillions of cell babies and were well on our way to inhabiting this already capacious flat but just at the beginning of September all changed, which is the reason I am writing to you now.
In September, it soon became obvious that the building owned by you, 1 Left Bra Terrace, was having engineering work. My family and I have been frequently interrupted by drilling work, and numerous needling intrusions into our home. Not only that, but we experienced a burglary too where some of our cells were taken.
To add injury to insult, at the end of September, it was clear that you had initiated covert operations against us. Repeatedly, every three weeks in fact, the hallway of our apartment was filled with noxious, foul smelling and almost, dare I say, poisonous liquids? I am afraid that my family's response to this was immediate dropping almost 30% of our living space in only four of these sessions. What is going on? May I remind you that I am known as the 'BIG C', not 'Little C', or 'Reducing Rapidly C' ! I have also heard from our neighbours living at 1 Right Bra Terrace that you are planning four more of these sessions? At least, that is what I think they were saying in between the 'nee ner nee ner' comments.
As if that weren't over and above what any life sucking tenant would expect, I now understand that you have summoned in the government inspectors next Tuesday to verify the size of our apartment. I must protest in the strongest terms at this final and most irritating intrusion into our privacy. It seems that you have affronted us at every door; even our parents-in-law in the lymph node granny flat have been reduced to rooms a quarter of their size, my cousins have been unable to move out into 'Bone Avenue', 'Liver Lane' or 'Brain Boulevard' and my wife and I have had to stop our marital pursuits as she is now never in the mood - something to do with my shrinking I understand.
Despite initially indicating that our family would be here for the life of the building, I must now write that we are planning on leaving. The fact that you clearly maintain this flat in tiptop condition, that you insist on regularly cleaning, exercising, and working this apartment block as well as the repeated harassment, noise and disruption have all indicated that you do not value our tenancy and we are therefore giving in our notice....
Invasive Ductal Carcinoma and family.....
Wednesday, December 07, 2005
I decided I didn't have enough challenges in my life and that, consequently, I would give my stress-free existence yet another one. Holidailies starts today - a festival of blogging over the Winter Solstice..where every blogger who signs up, and there are 160 of us, have to do at least one entry a day from the 7th December to the 6th January.. AM I MAD? I mean, I am a divorced, single mother of three kids, facing Christmas, chemo and cancer and I have taken on something else... I am reminded of a grandmother saying pertly, 'if you want something done, ask someone busy', but I know that wasn't MY grandmother because my grandmother at the age of 80 still used to chat up young men and sculpture the heads of footballers... Our family unconventional? What EVER gave you that idea?
So Christmas - season of excess, overeating and overwhelming consumerism. I am currently trying to think of something that I can do with my kids to bring the true message home - nothing preachy but just a reminder of those less fortunate. The favourite at the moment is clearing drawers of old toys and clothes and donating them to the local charity. I don't want to thrust it down their necks, I don't think that is fair, but we are, as humans part of a global community, and whether Christian, Jew, Agnostic, Atheist, Humanist or Bhuddist or any other religion or not, (phew!) we all want to feel included and thought of...
And finally, in the spirit of the season, could the w**ker who wrote to me anonymously telling me to 'stop blogging' please find the nearest non-drop tree to impale him or herself on?
Thank you and happy holidays,
Monday, December 05, 2005
No, because when I started searching for my passport, it was nowhere to be seen. As I suffer from the well known disease, 'safeplaceitis' which involves hiding something where it will never be found again by friend or foe, I sort of suspected I might have put it in a 'safe place' namely between two of my books... I studied English at university, I am a self-confessed bibliophile, I collect signed first editions, and I hid it between two of my books.. What WAS I THINKING??!!
Cut to three hours later - I was sitting on the floor having gone through every one of my bookshelves looking for my passport, sobbing on the floor, tears running through my face. I had had enough. Enough of the stress of having this stupid disease, enough of not sleeping due to the steroids, enough of having to deal with insurance companies, enough of the guilt of not working colliding with the desire, if not the strengh , to work, and I cried like a baby, sitting on the floor... I feel it all so much, my emotions are all so close to the surface that one smidgen of guilt, anger or frustration just smashes my whole carefully constructed edifice and I fall, like shattered glass, on the ground.
And then? And then I went over to the Festival of Compassion at Cancer Watch and read this...
She is, in my eyes, an angel indeed and I have nothing, nothing at all to complain about...well, apart from a stolen passport.
Sunday, December 04, 2005
Thank you to Ms Chatty, the British Bitch and her team of cronies and anyone who DARES say that it was good because I have cancer gets this little friendly package under their tree...
Been dying to use those photographs....
Saturday, December 03, 2005
I have always been afraid of death and the idea of leaving this world. As a very young child I used to imagine myself in a coffin, the hard wood underneath my back and thighs, the darkness of a confined space above me and the hard sides just beyond my feet and hands. I used to wake up crying at the thought of no longer being here, of my skin no longer being able to feel the heat of sunshine, the damp surprise of rain or the sudden gasp of cold wind. I think it was the awareness of dying itself that scared me, rather than the act itself. The idea that I would be aware of my self, as Minerva, slipping the ropes and ties that kept me anchored to earth, to senses, to emotions and would become a part of the inanimate and the unfeeling.
As cancer came into my life, my first thoughts, of course, were how long have I got? Despite reassurances from doctors, there is always the thought of how long will it take? Will this cancer kill me in 5 years, 7 years, 10 years, or 20 years? Or, will it be something else entirely that takes me? Will the dustbin truck outside my house suddenly slip gear? Will another intruder take me next time? Will my death be expected, awaited, almost a relief to those around me? Or will it be a shock, a fright, something that will haunt?
As one starts to think of years, it seems still strangely abstract until I start comparing it with the lives of my children. Five years, my eldest will be 17, on the verge of womanhood, my twins doing their GCSEs, ten years, my eldest will be finishing university, if that is her path and the twins will be doing their A-levels, and all exploring their new adulthood. Even longer, twenty years, and they will be loved by someone worthy of them, perhaps with children, if they want, and if not, then rejoicing in their lives.
I so want to be there for them and with them on that journey but the scariest thing about this disease is that you realise, to a certain extent, that choice is taken from you. I am not planning to let it get me, I have too much to achieve, too much to do, too much to see, to feel and to love to leave this life yet. But if, or even when, it, or something else 'gets' me, it won't really. I shall always feel that I am with my beautiful children, that I will always be there with them, even as only a memory, but a memory with open arms, a memory with the strength of facing the future boldly and confidently, and a memory with arms of love that shall always surround them and care for them through their journey.
Friday, December 02, 2005
Yesterday was another good day and I felt a bit of a fraud lying in bed when I didn't feel that sick. Having said that, today I am relieved as it means that I didn't do too much now that I need those physical reserves.
Slowly as my body returns to normal, so too, my house. Yesterday we had a glazier to finish off work on the main window in the sitting room and new locks put on to all the windows. No points by the way for talking of bolting stable doors - comments like that are NOT appreciated at the moment. Today the glazier for the first floor window comes to 'reinstate the condition' of the original window. Given the original window was a louvred window which meant the burgulars could get in easily, I am not too keen on the reinstatement... may be looking for a fight later... I suppose the skinhead fits!
Sorry about the lack of coherence in this post - a splitting headache and churning stomach don't help the 'leetle grey cells'.
I shall be back,