I think for those majority who have not had to have chemotherapy the horror is in the administration. The shots of grey people, sitting in grey environments, being slowly and purposefully poisoned is the stuff of nightmares; a sci fi image from which there is no escape!
Indeed it must vary from person to person,cancer to cancer, cycle to cycle and drug to drug, but my observations of, and experience in current practice, are that the period of actual chemo is not the worst part of the cancer treatment, merely the beginning.
For me sitting for days, then hours on end, whilst various concoctions; to hydrate me, strengthen my physical response, encourage my renal function, kill new cell growth and finally flush through my systems, has been tedious but otherwise uneventful. Your don't immediately feel ill, there is no pain surge or fight with nausea and the systems which fight off poisonous invasion are well under control.
Thanks to all the cancer research, gone are the days when the doctors only real concern was to attack those cancer cells & the side effects were often largely ignored or solutions not yet found.Nowadays the medics have finely tuned the concoctions so your digestive system does not try to reject, your cerebral response does not cause reaction and your lymphatic & blood circulation works to its best; they treat the whole patient and the whole of the issues with & caused by the cancer.
The hardest part is the aftermath of the treatment; the three weeks in between treatments and the struggle mentally & physically and it has a sort of pattern & near predicable time scale, with unpredictable outcomes. It runs something like this:
Wk 1 feeling really rough, unreasonably tired, lacking energy, yet constant insomnia Food & drink tastes strange / unpleasant and smells are often extreme & overpowering. Favourite foods are undesirable, even water tastes unpalatable, food cooking smells nauseating and no perfume or deodorant works, it all smells foul.
Wk 2: Actually as above, but worse as the white blood cells are now well depleted and your immune system is compromised. I have had strange food desires, as my poor body tries to readjust the balance within. So far its been; dried apricots, scotch eggs, Dime bars, olives & anchovies. OK doesn't sound that bad but in quantity, together or in the middle of the night not good.
Wk 3: Much improved, less physical illness & discomfort and greater energy, but not to be fooled try & do any 'normal' physical activity and you will quickly know your limitations. Its a week to cram in any social activity and get out & about, but it does have an emotional down side. As the fateful day for the oncologist & subsequent chemo nears the ' fight or flight' response makes you tearful, angry, fearful and despondent, in equal measures.
So you go from being house bound only wanting to stay in your safe place, to paranoid about going out for fear of sudden illness and the ever danger of infection, to craving social contact and desperate to do something physically demanding, just get out and live.
And at the end of the three weeks, when you are at your best, comes the upset of having to cancel events, concern at offending others, seeming inconsistency and trying too hard to be well. Everything circles round in your brain, your behaviour is far from rational and then you have to prepare for the onslaught all over again, perhaps that's why they call the chemo sessions ' cycles'.
So the thought of sitting in that room linked to a drip is far from fearful, infact its quite cathartic, everyone in the same boat with an obvious cause & shared enemy. Well at least that what we reassure each other with nods & smiles & words...we are warriers preparing for battle. This is putting our armour on. practising our moves; the real fight occurs alone in the houses & bedrooms, the hearts & minds of the individuals.
Rocky Ready 6th chemo...bring it on!
Monday 24 November 2014
Monday 27 October 2014
The Ecstasy of Silence
I started this blog wondering what it felt like just before the bullet hit about those seconds when you realised the fatality, before you could respond to the event; well now I realise that this shock and those events work both ways...for both good and bad news!
Two weeks ago I went to find out the results of the latest PET scan. Hopeful, but afraid, trying to be strong , but resigned. What happened that afternoon stunned me into silence. I mean total, physical, emotional, spiritual all embracing silence...a vacuum of a place, isolated and pristine.
It was not the mediocre news I hoped for, nor the devastating news I expected, it was very good news. Post chemo 3 cycles, they could find no further trace of cancer in my lower body!
Say that again, how can that be, I can't believe this, you are joking, its a mistake, are you sure, what does it mean; all questions tumbling through your mind all clamouring for attention, demanding answers. Smiling faces, reassuring nods, reaffirmations, confusions and, above all, deep inside, silence.
The jigsaw had just been thrown up in the air and where the pieces fell I had no idea.
We shouted, we cried, we made calls, we sent messages, we packed and we ran off to France briefly, afraid someone would take the gift from us. And since then we can't think, can't reason, don't know whether to plan or consolidate. I am by no means in the clear, not cured, I still have to have three more chemotherapy cycles and there are still areas of uncertainty in my upper torso, but maybe, just maybe the jigsaw picture has changed.
Everyone is delighted, but uncertain how to react; is she better, can we stop worrying, so there's radio silence. Its taken me this long & post a forth chemo cycle to actually write the blog again, its as though I daren't risk saying anything, just in case I tempt fate. But is it fate or fear? Am I too anxious ? Can I, dare I even relax a little? I look reasonably well, have not lost my hair or become emaciated? Is this real?
Chemotherapy has levelled all that, knocking me back & reminding me I'm not out of the woods, just not in the deep forest. And for those I love it gives them a glimpse of those far glistening horizons, which I can't see yet, a promise or vibrant dawns and stunning sunsets.
My 'Grey Jigsaw' just got a whole lot more colourful, I need to bathe in that sunlight!
Two weeks ago I went to find out the results of the latest PET scan. Hopeful, but afraid, trying to be strong , but resigned. What happened that afternoon stunned me into silence. I mean total, physical, emotional, spiritual all embracing silence...a vacuum of a place, isolated and pristine.
It was not the mediocre news I hoped for, nor the devastating news I expected, it was very good news. Post chemo 3 cycles, they could find no further trace of cancer in my lower body!
Say that again, how can that be, I can't believe this, you are joking, its a mistake, are you sure, what does it mean; all questions tumbling through your mind all clamouring for attention, demanding answers. Smiling faces, reassuring nods, reaffirmations, confusions and, above all, deep inside, silence.
The jigsaw had just been thrown up in the air and where the pieces fell I had no idea.
We shouted, we cried, we made calls, we sent messages, we packed and we ran off to France briefly, afraid someone would take the gift from us. And since then we can't think, can't reason, don't know whether to plan or consolidate. I am by no means in the clear, not cured, I still have to have three more chemotherapy cycles and there are still areas of uncertainty in my upper torso, but maybe, just maybe the jigsaw picture has changed.
Everyone is delighted, but uncertain how to react; is she better, can we stop worrying, so there's radio silence. Its taken me this long & post a forth chemo cycle to actually write the blog again, its as though I daren't risk saying anything, just in case I tempt fate. But is it fate or fear? Am I too anxious ? Can I, dare I even relax a little? I look reasonably well, have not lost my hair or become emaciated? Is this real?
Chemotherapy has levelled all that, knocking me back & reminding me I'm not out of the woods, just not in the deep forest. And for those I love it gives them a glimpse of those far glistening horizons, which I can't see yet, a promise or vibrant dawns and stunning sunsets.
My 'Grey Jigsaw' just got a whole lot more colourful, I need to bathe in that sunlight!
Saturday 4 October 2014
Chemo Brain...well you've got to laugh
This blog, by merit of its purpose, as a post cancer journal, tends to be on the heavy side and yet there is a lighter, funnier side to the disease and its indignities.
One of the side effects of chemotherapy is what's called, even by the medics,'Chemo Brain'. This phenomena is about the response that brain makes to the influx of the various poisons which constitute the medicine that attacks the cancer cells. Generally speaking its a cross between forgetfulness, confusion, lack of orientation and a whole series of strange symptoms which make you somewhat 'befuddled'.
I had an extreme version of this when given one of the chemo drugs to which my brain reacted very strangely. I was constantly talking, loosing track of where I was, what I was talking about and talking illogically. Though I was aware of this I was unable to counter it and found my mind solving all sorts of problems and finding all sorts of hidden meanings. I was awake for two nights, not tired, but wired & could have run the country, reorganised the hospital or cured the ills of the world; none of these would have been any good, but I felt anything was possible! I sent texts that made no sense, filled in crosswords where the answers did not fit the clues & in many cases were just random letters/ not real words, to complete the grid. I kept seeing hidden meaning in things; the hospital bed adjuster had a symbol for elevating or lowering, which I really understood to represent the meaning of life & how we live it!
Then there was the early Alzheimer type response; extreme forgetfulness & lack of short term memory. The best example is when I tried to get ready for bed, a simple wash & teeth clean and the bathroom was next to my bed. It took me nearly an hour to get the things I needed together, I kept forgetting I'd got the towel and looking for it again, I mislaid the toothbrush several times even though I had it in my hand. Finally I got to the bathroom and it then took me a similar time to get that wash; I kept repeating the same action, forgetting what I had done, what was next, brain running in a loop.
This sounds nightmarish but even in my confused state was vaguely amusing and, because it was picked up by both patients & medical staff, was quickly assessed as due to one of the drugs & adjusted. But the on going 'normal' chemo brain goes on regardless and its examples are even better. Because of the lymphedema (swelling in the upper leg caused as the lymph nodes having been removed and the system is struggling to deal with the lymph drainage). Hence I was referred to the lymphedema team for advice & exercise.
Ron & I duly attended the first appointment to be greeted by an enthusiastic, rather loud specialist nurse keen to help us understand and apply knowledge to aid my condition. She prescribed some neoprene compression shorts/corsetry and specific exercises. Having shown us the actions herself for the simple movements she then explained that if Ron carried out the massages this might be more beneficial, so she demonstrated on him. Now to understand this you have to realise that there are primary groups of lymph nodes all over the body, but majorly in the neck, armpits diaphragm and groin. So, leaping behind him she explained that the object of the massage was to activate the other nodes so they took up the work of those removed. She vigorously massaged first his neck, then armpits and abdomen and we both felt sure she was about the make a grab for lower areas had it not been for Ron sitting down assuring her that he got the idea! Well we never thought we'd get that sort of treatment on the NHS!
So I took the short things and tried to wear them under trousers, with pants, but they were so hot I ended up red faced & sweating. No problem I thought I'll just wear them as shorts, it was mild weather and they were black neoprene. I voiced the idea to my husband, "Do you think it would look Ok?" and the look of amused shock crossed his face. "Don't forget love they are crutchless" was his barely audible reply, just before he burst with laughter.
Now that would have been chemo brain too far!
One of the side effects of chemotherapy is what's called, even by the medics,'Chemo Brain'. This phenomena is about the response that brain makes to the influx of the various poisons which constitute the medicine that attacks the cancer cells. Generally speaking its a cross between forgetfulness, confusion, lack of orientation and a whole series of strange symptoms which make you somewhat 'befuddled'.
I had an extreme version of this when given one of the chemo drugs to which my brain reacted very strangely. I was constantly talking, loosing track of where I was, what I was talking about and talking illogically. Though I was aware of this I was unable to counter it and found my mind solving all sorts of problems and finding all sorts of hidden meanings. I was awake for two nights, not tired, but wired & could have run the country, reorganised the hospital or cured the ills of the world; none of these would have been any good, but I felt anything was possible! I sent texts that made no sense, filled in crosswords where the answers did not fit the clues & in many cases were just random letters/ not real words, to complete the grid. I kept seeing hidden meaning in things; the hospital bed adjuster had a symbol for elevating or lowering, which I really understood to represent the meaning of life & how we live it!
Then there was the early Alzheimer type response; extreme forgetfulness & lack of short term memory. The best example is when I tried to get ready for bed, a simple wash & teeth clean and the bathroom was next to my bed. It took me nearly an hour to get the things I needed together, I kept forgetting I'd got the towel and looking for it again, I mislaid the toothbrush several times even though I had it in my hand. Finally I got to the bathroom and it then took me a similar time to get that wash; I kept repeating the same action, forgetting what I had done, what was next, brain running in a loop.
This sounds nightmarish but even in my confused state was vaguely amusing and, because it was picked up by both patients & medical staff, was quickly assessed as due to one of the drugs & adjusted. But the on going 'normal' chemo brain goes on regardless and its examples are even better. Because of the lymphedema (swelling in the upper leg caused as the lymph nodes having been removed and the system is struggling to deal with the lymph drainage). Hence I was referred to the lymphedema team for advice & exercise.
Ron & I duly attended the first appointment to be greeted by an enthusiastic, rather loud specialist nurse keen to help us understand and apply knowledge to aid my condition. She prescribed some neoprene compression shorts/corsetry and specific exercises. Having shown us the actions herself for the simple movements she then explained that if Ron carried out the massages this might be more beneficial, so she demonstrated on him. Now to understand this you have to realise that there are primary groups of lymph nodes all over the body, but majorly in the neck, armpits diaphragm and groin. So, leaping behind him she explained that the object of the massage was to activate the other nodes so they took up the work of those removed. She vigorously massaged first his neck, then armpits and abdomen and we both felt sure she was about the make a grab for lower areas had it not been for Ron sitting down assuring her that he got the idea! Well we never thought we'd get that sort of treatment on the NHS!
So I took the short things and tried to wear them under trousers, with pants, but they were so hot I ended up red faced & sweating. No problem I thought I'll just wear them as shorts, it was mild weather and they were black neoprene. I voiced the idea to my husband, "Do you think it would look Ok?" and the look of amused shock crossed his face. "Don't forget love they are crutchless" was his barely audible reply, just before he burst with laughter.
Now that would have been chemo brain too far!
Tuesday 30 September 2014
Chemo Rhyming Couplets...
It seems that the more anxious and caged I feel, the greater the desire to write in rhyme. Maybe its safety or the need to tame my brain; don’t over think it, live in the moment, go for the present ! Oh dear well that's not going to happen just writing this ....
You cannot change, the who or what.
About yourself or what you’ve got.
But family lessons, people’s way,
You’ve time to ponder how things lay.
The spoilt one, its love they seek
Who spoils all, acceptance weak.
For now old age Mum matters not.
Must be the first, must get the lot.
And then the brother damaged so.
Who can’t respond, who doesn’t know.
Just how to love or selfless care.
Moneys his god, he doesn’t dare.
And somewhere lost in age & time
My father sits with mind sublime.
But locked in guilt and anger too.
That war lost youth with feelings true.
And nuclear family, wonderful Ron.
Intelligent, creative, loving strong.
Daughter steadfast, caring so.
Son so loving consistent know.
Relations close the circle fast.
Making sure my life can last.
Be the brother, hold the line.
Niece and in law, all is fine.
And friends and neighbours all who care.
With gifts and message, sentiment fair.
You make me strong, you keep me sane.
You’ll never know, you ease the pain.
All the love around and all the care, I am humbled and honoured. I feel nurtured and privileged to know how much people, not only feel positively about me, but that they are prepared to publicly share that. I spent many years, both in work, social ways, countering the professional jealousies and workplace fighting, with people envying or showing animosity.
But now I feel the warmth of care, the softness of love and the all-embracing
calmness of hope.
Thank you all
Patient patient, that special link
There is a very special link between the medical staff and cancer sufferers and the emotional bond is both ways. I asked one male nurse why he worked in this speciality his story, humbled & silenced me.
He said, having worked in oncology, he had had a medical work related accident which had left him part paralysed in his twenties. Wheelchair bound he was offered experimental surgery / treatment which could resolve this, but could make it worse and leave him permanently disabled. His response was to sit back, not risk it,stay safe. Then he thought of the cancer patients he had known and how much resolve & how hard they fought. His spirit lifted and he thought, how can I not try, what right do I have to just sit here, I must fight. So he had the operation, did the lengthy rehab and as he said, “look at me now, life is a gamble and you have to give yourself the best odds”.
My curiosity raised I started to watch & listen to the nurse /patient interactions, what I found made me see cancer treatment in a ‘Whole’ different way.
The following story was told to me by a cancer nurse, late one evening, during my weeks stay in hospital. She told me that she had been a MacMillan nurse in a hospice where she met a terminally ill young patient. Both of very similar age & interests, laughed a lot together and both were very proud of their hair; long and blonde.
The patient was aware that she was going to loose her beautiful hair & decided to have the long locks cut off and a clip on pony tail made. This done, as her shorter hair lessened, she could still enjoy her own, though pretend locks. The nurse simultaneously decided to have her hair cut and was bitterly disappointed with the results.
As she was attending the sick patient, the patient realised the nurse was not happy and questioned her.” It will grow back”, the nurse asserted, “not a problem*, but in her heart she felt a loss. The patient comforted her; ill but with huge empathy, she retained the care for others and knew the importance of the trivia in everyday life & that its all relative to where you are.
The nurse later moved job and received a package addressed to her and, on opening the parcel, found it contained the clip on pony tail. Apparently the dying woman had asked her mother, to ensure that, when she died, the beautiful hair piece was sent to the nurse. She knew just how important how you feel is. What happens on the outside effects what happens on the inside.
Do you call it pride, vanity, self esteem or care? Whatever it is, it’s a vital ingredient in keeping a grasp on reality in this unreal world of chemicals and beeping machines.
So, did the nurse wear it? Yes many times and loved it. And now, does she still have it all those years on? Yes, its sits nestled lovingly in a box,in a drawer; a loving memory of a simple life affirming belief… be yourself!
Monday 29 September 2014
From Rainbow fields to Guardian Angels
Its interesting peoples responses to cancer. Even the word itself is sometimes avoided or cloaked in euphemism. But it’s more fascinating how individuals react to me personally.
I have been humbled by the words cards and gestures of support. People don’t realise just how supportive they are being, how much strength it gives and how much positivity it generates. It’s the people who look you in the eyes, see your predicament but still see you. Now that can happen one to one but even happen in an e mail or Facebook entry…. You know just in those few words just how much that person means its quite remarkable.
Then there’s the strange responses, like the link I was sent to a piece called ‘The Rainbow Bridge’, which, it turned out was about how animals can get into heaven. Similarly a visual post about guardian angels, in itself a good message, but the illustration was of fairy figures like those in a children’s story.
People try to be helpful and find solutions sending information about possible miracle substances or wonder cures. These vary from medical peer revised articles to newsprint and general press releases. They suggest a whole gambit of products and substances from orange juice to cannabis, people trying to be really helpful.
And then the messages of hope, phrases to inspire, statements of philosophy and affirmations of life. All wonderful expressions of care and hope….thank you all .But please save me from the cuddly kittens and cute pouches….I like animals, but fantasy v philosophy, that’s a step too far!
And as to my real guardian angels, well they are there. They turn up when I most need them (selfless and time giving), they answer my written thoughts (mails & calls), they realise my inner toil, but don't let me mope. The love shines through their eyes and words and lights my day. My gran used to say, " look for angels in unusual places", indeed she was right, they are all around me.
And as to my real guardian angels, well they are there. They turn up when I most need them (selfless and time giving), they answer my written thoughts (mails & calls), they realise my inner toil, but don't let me mope. The love shines through their eyes and words and lights my day. My gran used to say, " look for angels in unusual places", indeed she was right, they are all around me.
First chemo: and then fate and fight stood up...
Need to get your house in order, need to plan and end.
Need to be a realist, time how best to spend.
Don't be a fool, prepare but dream.
Don't waste the time with detailed scheme.
Hear the love, the care, the hope.
All around you don't dare mope.
Feel fatality closing fast.
Time & mortality, seasons past..
New infections, asthma too.
Call in the doctor, flashing blue.
Get off your bum, stand up &ight.
Get going positivity, shine the light.
You owe it to you, to all of them.
Refute the where, the who, the when!
But I'm so tired, so much to do.
Just let me sleep, pain not renew.
I can't keep doing, l'm weak, I'm small,
Chemo attacking, too much, big call.
You don't have choices, need to believe, pull on those gloves, focus breathe!
Fitness ready, faith intact.
Bell rings, here's Rocky coming back!
Betwixt the two, of fight and of fear,
Lies an ocean of emption, a canyon severe.
It must be crossed over, you can't loose the way,
Look up, see the sunshine, clean fresh; a new day!
Need to be a realist, time how best to spend.
Don't be a fool, prepare but dream.
Don't waste the time with detailed scheme.
Hear the love, the care, the hope.
All around you don't dare mope.
Feel fatality closing fast.
Time & mortality, seasons past..
New infections, asthma too.
Call in the doctor, flashing blue.
Get off your bum, stand up &ight.
Get going positivity, shine the light.
You owe it to you, to all of them.
Refute the where, the who, the when!
But I'm so tired, so much to do.
Just let me sleep, pain not renew.
I can't keep doing, l'm weak, I'm small,
Chemo attacking, too much, big call.
You don't have choices, need to believe, pull on those gloves, focus breathe!
Fitness ready, faith intact.
Bell rings, here's Rocky coming back!
Betwixt the two, of fight and of fear,
Lies an ocean of emption, a canyon severe.
It must be crossed over, you can't loose the way,
Look up, see the sunshine, clean fresh; a new day!
Wednesday 3 September 2014
Noisy Ward August 2014
Nurses nattering, night,night, night.
Can't get to sleep, fight, fight, fight.
Medics on duty, thinking its day.
Rest of us shattered, please go away!
Sleep on the sofa. Nap in a chair.
Avoiding commotion, TV blare.
Peace in the ward, possible to keep.
Just go away & let me sleep!
Can't get to sleep, fight, fight, fight.
Medics on duty, thinking its day.
Rest of us shattered, please go away!
Sleep on the sofa. Nap in a chair.
Avoiding commotion, TV blare.
Peace in the ward, possible to keep.
Just go away & let me sleep!
Saturday 16 August 2014
Tick, Tock Time...
We measure many things in daily life and give them value, but when it comes down to it only one thing matters… time itself! All else we can potentially acquire, save for, accumulate, store or even steal .But not time.
Indeed we tend to use negative terms for the noun TIME. We ‘save’ time, have a ‘hard time’, wait a’ long time’ when we describe this valuable commodity. We are dismissive of it; ‘anytime’, ‘sometime’, ‘overtime’ or we ‘waste time’.
We even quantify time; we ‘manage’, have ‘timetables’, are counting time] , ‘marking time’, seeing time passing or give ‘time out’! If it doesn’t move as we think and resolution is not planned, we look for ‘extra time’, we ‘reflect on time’ and hope that ‘time heals.
But in the ‘course of time’, we realise that ‘time matters’, it is the one final limit. Equally & importantly, time is the most precious commodity we can have. So as time waits for no man’ and ‘time doesn’t stand stil'l, I’ve come to think that just keeping ‘keeping pace with time ’or ‘letting time pass’, makes no difference. Time is what it is, ‘a life time’.
Ever noticed how the best words are four lettered, I mean the words like ‘good’, ‘love’, ‘hope’ , not merely words but real emotions. So when the doctor, speaking to an elderly patient gives ‘time’, when our neighbours in France share coffee time, or when visitors sitting at your bedside natter and share; they all give their most precious of gifts ‘time’!
All those calls and cards, those mails and twitters, those gifts and letters they are all peoples way if giving me the gift of their time and its is quite magical. So I have one strong hope: Give me time to say thank you, time to love and time to breathe
The Finality of Words
So what happens next, life’s going on all around and you’ve been told whart we all know, but choose to close the door on…’Time is not infinite & you have a sell by date’.You start to notice phrases & catch lines, ironies and humour, all laced with cold fear.
First was. “Danger of Death” posted on an electricity substation, well I suppose deaths quite a dangerous thing. Then ‘”Love your Life” on a Slimming poster, don’t we all just take that for granted, we really should LOVE the life.
Next an advert for a soft drink, “Live Well”, is this a ’well’ as in happiness, wealth or health?
And finally and very profoundly, in seeking moral / spiritual help from a professional friend I asked,
‘How can I prepare for death & make it easier for those I love and care for. The answer was sweet in its simplicity, happy in its honesty…
‘How can I prepare for death & make it easier for those I love and care for. The answer was sweet in its simplicity, happy in its honesty…
My Deacon friend concisely said.. ‘Prepare for Life, and that's what we all should do.
So I'm posting daily, simple things which make me happy on #100HappyDays. Looking for the small, the special and the wonderful in my everyday life.
So I'm posting daily, simple things which make me happy on #100HappyDays. Looking for the small, the special and the wonderful in my everyday life.
Anxious Visitors...UHNS room with a view
Meat wagons arriving all through te night ,
Sirens wailing, flashing blue light.
Let’s get then there mate, just can’t wait.
Quick as you can lads; great! great! great!
Sirens wailing, flashing blue light.
Let’s get then there mate, just can’t wait.
Quick as you can lads; great! great! great!
Pateints a'slumbering, drug, doped haze,
Visitors arriving, hospital maze.
St back, fall bac,k let it all go by,
Big picture window, time goes by.
Billowing clouds, sunlit heights,
Chuntering cars, road race fright.
Nurses arriving, change of shift,
Always surprising, vista drift.
Feeling the panic, but not the pain.
Constantly watching anxieties the name.
Mind eve thinking words/thoughts to tame,
Be still be silent, waitings the game.
Friday 15 August 2014
Cut, test, forth op...pre op thoughts
I wait again, same clock, same time,
Fingers moving not reason nor rhyme.
As though my life so measured be,
By test & record to remedy.
How much they cut & deep the pain.
Longing resolution & crave the same.
So this will happen, that might be.
Just get me done, operate on me.
I’ll wake in confusion affirming my name,
But let it be over & not come again.
I’ll give all their honour and smile sublime.
Please let me be healthy, live this life of mine.
Tuesday 29 July 2014
Light in the picture...ode to a small campsite in Talybont, Wales.
Sunshine through the curtains,
Glinting in the green.
Early morning campsite.
Happy, hopeful dream
Taking in the noises,
Children start to play.
Babbling excitement,
Starting a new day.
Colour true & banners
Encampment stripped & bright
Streets of vivid canvas.
Nylon, shine & light.
Tinkling stream & birdsong
Whistling kettle fare.
All awakening joyous
Life just everywhere.
Packing, awnings,sorting
Towels drying in the sun
Beautiful world this morning
Hold it close we are but one.
So for all I have to go through
Every dark and lonely time
Here within in me is this campsite
Held together yours & mine
Key focus of the picture
Its all about perspective; the width of your vision, the depth of the view and how things relate one to another. The news was not good from the oncologist; not the worst but pretty grim.
PET & CAT scans and bloods show primary vaginal cancer has now spread to four sections of my lymphatic system. Prognosis incurable, life shortening, but treatable. manageable, treatable, containable... all words in the echo of that room. My husband in shocked silence and a small voice in me ,resigned and peaceful.
"We can start chemo", "Radiotherapy is not suitable", "we'll try a double drug chemo", "3 time 3 weeks", "hospitalised treatment" ~ all phrases that altered the perspective, changed the focus and limited the view.
Like a Spielberg movie, the scene changed, shots lost clarity, held intensity and shocked. Seems I am to star in my very own blockbuster...' Mortality'
PET & CAT scans and bloods show primary vaginal cancer has now spread to four sections of my lymphatic system. Prognosis incurable, life shortening, but treatable. manageable, treatable, containable... all words in the echo of that room. My husband in shocked silence and a small voice in me ,resigned and peaceful.
"We can start chemo", "Radiotherapy is not suitable", "we'll try a double drug chemo", "3 time 3 weeks", "hospitalised treatment" ~ all phrases that altered the perspective, changed the focus and limited the view.
Like a Spielberg movie, the scene changed, shots lost clarity, held intensity and shocked. Seems I am to star in my very own blockbuster...' Mortality'
Thursday 10 July 2014
All those blue jigsaw pieces...
Tomorrow I go back to the oncologist to get the prognosis & all the test results.
I had thought it was to be a straightforward, though hardly desirable radiology 'Planning Meeting', but as of Tuesday that was changed. Now the specialist wants to see me. Now logic says it could be good news or just that he needs to feed the results back to me, but my heart is heavy in anticipation of bad news.
Call it anticipation, anxiety or adrenalin I'm finding it hard to settle. So what do I do with my time? Weeding, well that reminds me of the effect of radiotherapy killing the cancer at source, pruning I'm thinking surgery and spraying, oh no chemotherapy.
Hence I resort to my trusted remedy tidy & write; put my house/ mind in order & sort my thoughts. Strange how perspectives change! My mother used to clean windows when she was anxious, Ron mentally solves small practical problems, whilst others listen to music, solve puzzles or play computer games.
When working professionally, I used to bemoan my 'avoidance behaviour', until a colleague and psychologist on a behaviour project pointed out that it was not a negative behaviour, but 'Displacement Therapy'. So here I am being clever & logical, whilst I just thought I was being afraid & wasting my time.
Fearful Friday has just become Future Friday...bring it on!
I had thought it was to be a straightforward, though hardly desirable radiology 'Planning Meeting', but as of Tuesday that was changed. Now the specialist wants to see me. Now logic says it could be good news or just that he needs to feed the results back to me, but my heart is heavy in anticipation of bad news.
Call it anticipation, anxiety or adrenalin I'm finding it hard to settle. So what do I do with my time? Weeding, well that reminds me of the effect of radiotherapy killing the cancer at source, pruning I'm thinking surgery and spraying, oh no chemotherapy.
Hence I resort to my trusted remedy tidy & write; put my house/ mind in order & sort my thoughts. Strange how perspectives change! My mother used to clean windows when she was anxious, Ron mentally solves small practical problems, whilst others listen to music, solve puzzles or play computer games.
When working professionally, I used to bemoan my 'avoidance behaviour', until a colleague and psychologist on a behaviour project pointed out that it was not a negative behaviour, but 'Displacement Therapy'. So here I am being clever & logical, whilst I just thought I was being afraid & wasting my time.
Fearful Friday has just become Future Friday...bring it on!
Euphemisms and Medical Descriptions
Medics have a strange use of vocabulary, it sets them apart from the everyday world.
Now I am full of praise for the NHS in every sense; family, personal and current, but medicine itself is a funny old affair. At this current time I'm intermittently under the care of oncologists, radiologists, dermatologists, anaesthetists & gynaecologists, not to mention general practitioners, specialist nurses, nurse practitioners, practice managers & district nurses. And they all have their own way with words.
I started as, 'concerning', a phrase my GP said was medic shorthand for 'we are concerned we don't know'. Then I became a 'woman of mystery', not slinky clothing & secret moonlit meetings, no, but shorthand for 'we don't understand whats happening'. Later they were really 'excited' at finding the primary cancer and, because it was vaginal cancer, I then became an ' interesting rarity'.
Since then I have had consultants describing pain as 'exquisite' and the final operation as 'beautiful'; isn't that how they describe diamonds and football respectively?
Now I could be very flattered being; ' mysterious, exciting, exquisite & beautiful', but they are not referring to me in person. As any good patient knows, even with the great advances in medical training & people skills, the medics passion is the puzzle that is you or more importantly your ailment.
My husband has been told, by a surgeon, that he had a 'gall bladder like a bear' and the GP (who he rarely visits) 'you bring such interesting things', for these read ectopic heart problem & testicular cancer.
So there it is, strange vocabulary for a strange and noble profession and the rest of us can only stand in grateful linguistic confusion, now that's the real mystery. Patiently patient while they practise their practice
Now I am full of praise for the NHS in every sense; family, personal and current, but medicine itself is a funny old affair. At this current time I'm intermittently under the care of oncologists, radiologists, dermatologists, anaesthetists & gynaecologists, not to mention general practitioners, specialist nurses, nurse practitioners, practice managers & district nurses. And they all have their own way with words.
I started as, 'concerning', a phrase my GP said was medic shorthand for 'we are concerned we don't know'. Then I became a 'woman of mystery', not slinky clothing & secret moonlit meetings, no, but shorthand for 'we don't understand whats happening'. Later they were really 'excited' at finding the primary cancer and, because it was vaginal cancer, I then became an ' interesting rarity'.
Since then I have had consultants describing pain as 'exquisite' and the final operation as 'beautiful'; isn't that how they describe diamonds and football respectively?
Now I could be very flattered being; ' mysterious, exciting, exquisite & beautiful', but they are not referring to me in person. As any good patient knows, even with the great advances in medical training & people skills, the medics passion is the puzzle that is you or more importantly your ailment.
My husband has been told, by a surgeon, that he had a 'gall bladder like a bear' and the GP (who he rarely visits) 'you bring such interesting things', for these read ectopic heart problem & testicular cancer.
So there it is, strange vocabulary for a strange and noble profession and the rest of us can only stand in grateful linguistic confusion, now that's the real mystery. Patiently patient while they practise their practice
Humbled and happy...the weeks of recovery
Its been a while, but I have kept writing, its been my sanity; scant but holding me firm. The operations was a success, well at least in terms of the surgeon, who next day proudly showed his work to the assembled medical gang who followed him around.
I was in a lot of pain & had been all night. Being unable to take any of the standard morphine or heroin based heavy painkillers because of a previously diagnosed opioid sensitivity, paracetamal just didn't fit the bill. What followed were days of sleep and wakefulness, not necessarily at the right times and Ron ever vigilant to my needs.
Friends & family were great and the social media flooded with well wishes and greetings. My window sill was full of beautiful cards; pictures of flowers, sunlight and hope. Phone calls & texts, deliveries of gorgeous flowers, my parents visiting jointly...a first in forty divorced years. Just all quite amazing. It was very humbling how much care was shown, how people tried so hard to give me strength, engender hope and simply share human love.My legs swelled, lymph oedema, a usual but distressing side effect, which medics and district nurses tried to aid. So the days turned into weeks and slowly, and with a lot of help I have been improving.
The great news is they found no further cancer in the lymph nodes they removed
Happy days... feelingloved.
The Waiting Poem : Inguinal Lymph Node Dissection...snappy title
I wait again, same clock, same time.
Fingers silent, no reason, rhyme.
As though my life so measured be,
By test & scalpel remedy.
How much they cut, how deep the pain.
I long resolution & crave the same.
So this will happen, that might be.
Just get me done, operate on me!
I'll wake in confusion, confirming my name.
But let it be over & not come again!
I'll give all their honour & smile sublime.
Please let me be healthy...live this life of mine.
Fingers silent, no reason, rhyme.
As though my life so measured be,
By test & scalpel remedy.
How much they cut, how deep the pain.
I long resolution & crave the same.
So this will happen, that might be.
Just get me done, operate on me!
I'll wake in confusion, confirming my name.
But let it be over & not come again!
I'll give all their honour & smile sublime.
Please let me be healthy...live this life of mine.
Wednesday 28 May 2014
The Final Corner....can you see what it is yet?
Lump free & diagnosis clear.
Primary vaginal cancer (rare 270 only in UK last year) and secondary lymph node, as they act as the filtration system for the body. Solution removal of all groin lymph nodes both sides of my torso; a 'beautiful' operation apparently meaning clean & tidy by the medics, but 3 hours in surgery and then 7 /10 days in hospital to allow the drains to clear excess fluid.
Joy of joys, but at least I have a plan of action so tomorrow (29th May 2014), I go under the surgeons blade for the forth time in 2014. So for those confused by the has she got cancer / hasn't she...there's a problem /no its all clear... of my journey through cancer, I have put together a précis of the medical bits.
Not an award winning piece of prose, but it helped me to come to terms with the timescales and adrenalin of my imminent surgery and situation.
See you in about two weeks, I'll keep writing but don't think I'll have internet to publish. And to my friends and family, those who really care, be kind to each other, I'm getting there!
Primary vaginal cancer (rare 270 only in UK last year) and secondary lymph node, as they act as the filtration system for the body. Solution removal of all groin lymph nodes both sides of my torso; a 'beautiful' operation apparently meaning clean & tidy by the medics, but 3 hours in surgery and then 7 /10 days in hospital to allow the drains to clear excess fluid.
Joy of joys, but at least I have a plan of action so tomorrow (29th May 2014), I go under the surgeons blade for the forth time in 2014. So for those confused by the has she got cancer / hasn't she...there's a problem /no its all clear... of my journey through cancer, I have put together a précis of the medical bits.
Not an award winning piece of prose, but it helped me to come to terms with the timescales and adrenalin of my imminent surgery and situation.
See you in about two weeks, I'll keep writing but don't think I'll have internet to publish. And to my friends and family, those who really care, be kind to each other, I'm getting there!
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DATE
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ACTION
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NAME
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13 May 2013
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In France I found lump in Rt groin
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|
|
27 May 2013
|
French GP Referral for bloods & ultra scan
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Dr Gilles-Verilat
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|
28 May 2013
|
Blood Tests
|
Md Prodhomme
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|
30 May 2013
|
France Mayenne Radiologist
|
Mr Delafond
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|
31 May 2013
|
Return to French GP. She advised return home.
|
Dr Gilles-Verilat
|
|
17th June 2013
|
Leek UK: GP referral
UHNS oncology & dermatology
|
Dr Chudyk
|
|
18 June 2013
|
UHNS Oncologist
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Mr Soumian
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|
16 July 2013
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UHNS Guided Biopsy
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Mr Clarke
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|
30 July 2013
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Letter biopsy clear ‘reactive changes only’
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Mr Narayannan
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|
12th August 2013
|
Routine / non urgent Appointment
Oncology
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Mr Soumian CANCELLED BY HOSPITAL
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|
5th November 2013
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Appointment Oncology
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Mr Soumian CANCELLED BY HOSPITAL
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|
26 November
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Appointment Oncology
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Mr Soumian CHANGED BY HOSPITAL
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|
1 November 2013
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Appointment Oncology
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Mr Soumian
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|
10 December 2013
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Appointment Oncology
|
Mr Soumian
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|
15 January 2014
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UHNS Ward 105
Rt Lymph node removed
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Ward 105 (local anaesthetic)
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|
28 \January
|
Diagnosis squamous Cell Carcinoma
|
Mr Soumian
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|
5 Feb
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UHNS Gynaecology (no problems found)
|
Mr Redman
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5 Feb
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CAT Scan
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|
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18 Feb 2014
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Oncology ‘Women of mystery’ CT Scan showed no further cancer.
Referral to dermatology & ENT
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Mr Soumian
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11 March 2014
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Dermatology & Plastic surgery. Left lymph node painful.
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Mr Craven & My Rayatt
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|
2 April 2014
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UHNS Ward 105 Wide
excision of rt lymph node area
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Mr Rayatt (local anaesthetic)
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24 April
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Found lump in vagina
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Rang Specialist nurse UHNS
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30 April 2014
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UHNS Called in to Gynaecology; vaginal lump
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Mr Redman
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|
7 May 2014
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UHNS: Ultra scan left
groin
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Mr Clarke
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8th May 2014
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UHNS Ward 105 Vagianl
lump & left lymph node removed
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Mr Kudampur (Full anaesthetic & overnight stay)
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21 May 2014
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UHNS :ENT All clear. Previous appointments cancelled by hospital
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|
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21 May 2014
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UHNS Gynaecology Both lumps removed cancerous. Vaginal cancer
diagnosis
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Mr Redman
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21 May 2014
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CAT Scan
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|
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29 May 2014
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UHNS Ward 105 and 7 / 10
day stay Both lymph node areas in groin removed
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Mr Redman / Mr Kudampur
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|
9 June 2014
|
UHNS Dermatology appointment changed
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Mr Craven
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30 June 2014 due
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UHNS Dermatology
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Mr Craven
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