Looking at old photos today… translating old recipes from my mum’s cook book… even writing letters myself. Not a bad way to pass time while being locked into the house.
And it brings this haiku in mind:
Written letters, yes
not coloured leaves raked up
burned after reading
(Matsuo Basho)
Not necessarily good books, you understand! 🙂
Have you ever thought about the books that changed your life? If you haven’t, try now: I guess that immediately a handful of books will pop up in your mind. But these are not the books you want. These are the good books, the memorable books that you read and re-read and cherished over the years, the ones you talk about so much that your long suffering friends and family can finish your sentences for you. No, these are not the books that changed your life; or at least, not in most cases.
But the books that changed your life? Truly changed your life? The ones that helped form your personality and beliefs, the ones that led you to pick your career, that led you to the chance encounter with the love of your life, the ones that helped you through a personal crisis? What are the books that changed your life? They’re surprisingly hard to pin down.
Here come mine (and they might turn out to be quite a bizarre collection):
The endearing story of a faithful dog by Eric Knight, the ultimate animal adventure that has been turned into innumerable cutesy film series absolutely nothing to do with the original story.
What it did for me:
It taught me to be honest. It taught me to be honest in a way that you can actually keep it up for an entire lifetime. As the elder Carraclough demonstrates to his son, Joe, there often is a tiny wriggle room.
But only a tiny one.
The kids in this Arthur Ransome book are let loose outdoors – in a way that hardly any children nowadays are. In my time, we were still not as corralled, and were allowed out to explore and have fun. And we made our friendships and fought our own fights, instead of attending play dates organised by our mothers two weeks ahead.
How it changed me:
It turned me from a book reader hiding in a room into an outdoors kid, who went out to climb trees and rocks, explored the woods, crawled among the metre tall grass pretending to be an Apache sneaking up on the pale faces, swam in the river and went down to the boating lake and taught herself to row. Reading about adventures is good but living them is better. And let’s not forget what made it all possible: What would have become of the Swallows without Susan’s sturdy common sense and ability to organise? I know people who are incapable of packing a rucksack, or indeed wouldn’t even dream of carrying one.
(And always know where your towel is!
One of the many self-help books out there on the market; in no way remarkable (which is why I’m not bothering giving you the author). But it was the first I ever self-help book I read and it made me realise how stress or long term abuse affects us, how it can generate physical symptoms, and how the effects maybe only appear years later.
What it did for me:
I learned to stop my hiccups! 🙂 (Seriously.)
Stopping hiccups was actually just a side effect of my reading this particular self-help book about stress. What the book really taught me was that from learning how to stop hiccups to overcoming panic attacks, the answer is as much in our minds as in the pills our GP can prescribe us.
There are self-help books on practically everything – and obviously, some are better than others. They are worth considering as a resource when you’re up against something new. As they say, wise people learn from other people’s mistakes, while fools keep committing the same ones. Knowledge is power: once you understand what’s going on in your mind and body, in your work place or your family life, you can devise strategies to cope and to improve the situation.
One of those P.G. Wodehouse books that almost nobody reads or even heard of: an English boarding school story which introduces us to the character of Psmith. But it was the cricket mad title character Mike who was responsible for changing my life.
How this book changed my life:
The chapter in question contains a long cryptic description of a school cricket match which awoke an interest in me for the game. This interest led me to dedicate my MA thesis to the intertwining of cricket and nationalism in the British Empire; and the research I had to carry out to be able to write it brought me in contact with a certain number of Englishmen.
I ended up marrying one of them.
An endearing story of a silly bear that I cherished through childhood – and one that like Lassie Come Home was bastardised by the film industry – but it’s not here on its merit as a children’s book. I really, really came to appreciate Pooh Bear’s philosophy as an adult in a time of adversity, after I became terminally ill.
What it did for me:
It reminded me to try living life simply, immersing myself in the precious moment, enjoying the simple things in life, like a bit of fresh bread, the sunshine on my skin, the spring breeze in my hair, refusing to worry about something that might never come to pass.
The Japanese call this Zen and surround it with rituals and teachings that are meant to help you to acquire the habit of living the good life. I wish I cultivated the skill earlier; I would have had a happier life, with less worries. But it’s never too late and you don’t have to learn to meditate either…
Well, now, a political-philosophical essay, and I don’t like either politics, or philosophy…
But I grew up in a Communist country where access to information was limited and a free discussion of political opinions was not recommended if you wanted a quiet life. The result was that at the famous ‘change of the system’, as the fall of communism is referred to in Hungary, my political views were hazy in the extreme. I knew what I disagreed with but was unable to articulate what I believed to be right; I had no coherent picture in my mind as to what the world should look like. And then I picked up this slim volume in a foreign language bookshop in Budapest, in the early 1990s. And the world suddenly fell into place. The 19th century English philosopher and member of parliament (and an early champion of women’s suffrage), John Stuart Mill, knew how to put into words the ideas which I was only groping for.
What it did for me:
It provides the ethical background to everything I do and believe in. It gave me a yardstick too against which to measure if I come across a particularly puzzling ethical dilemma. I try to live my life according the principles John Stuart Mill articulated so clearly: live and let live.
There might be others; in fact, I’m sure there are. But these came to mind for now; a strange little collection.
Have you got any books that you feel that had a lasting impact on how you live your life? Please leave a comment below and explain why.
Links (Lists of life changing books):
⇒ 10 Life Changing Books That Stay With You
⇒ 27 Books That Can Change Your Life Forever
⇒ 30 Classic Books That May Change Your Life
I always loved to sit out in our garden at night and gaze at the stars. I would sit out even in winter, wrapped up in mountains of blankets.
When we first went into lockdown in the spring, stargazing proved a great escape and I decided to improve the experience by creating a classical playlist on Spotify.
I now remember the evenings of last summer. I listen to my stargazing music and seek solace communing with the stars in spirit…
stars in my eyes
wishing to see blossoms
on weeping cherries(Matsuo Basho)
I can only apologise again for the way I’m neglecting Lockdown Diaries III. But the progress of my illness made me unable to do anything much, and that includes blogging. Today is a ‘good’ morning – may it last more than a couple of hours- so here I am with another entry.
In the last couple of weeks, during the hours of suffering, my thoughts sometimes toyed with the idea of changing focus and reconfiguring Lockdown Diaries III into Death Bed Diaries: at least it would allow me to vent and so give myself psychological relief, even if no physical relief. And I thought of others in the same situation, and their families and how it could help them to know they’re not alone.
There was a blog out there once that I used to read, Terminally Fabulous, written by an Australian girl in her 30s. It was brutally honest in her description of cancer, the horrific treatments she underwent, the sufferings at the end when the doctors could do no more for her. She had a wicked sense of humour and many a times she made laugh while I cried for her at the same time. I used to read it when I was really in the dumps with the treatments and it helped me. Her name was Lisa Magill and she died a few years ago. Her blog has been published posthumously (in 2019) in a book form under the title of:
⇒ Terminally Fabulous: A young woman’s fight for dignity and fabulousness on her terminal cancer journey by Lisa Magill and Geraldine Violet Magill
I recommend it to you all. You can buy it on Amazon (and elsewhere).
But when it comes to me…
Lisa was inspirational and I wish I had the kind of talent that she put into her writing. But regardless of my lack of talent, the truth is that being that brutally honest and putting out my whole soul for all of you to see is just a step too far for me. So do not fear: Waterblogged was always a book blog and a book blog will remain to the day I die. We’ll keep the death talk to minimum. 🙂
There is one controversial question that I would mention though. Euthanasia, or if you will, assisted death. This is legal in some countries; but not in England. Regardless of your personal stance – ie. regardless whether you would choose to take advantage of it, were it available for you – I ask you all to consider: should not it be available for people who wish to avail themselves of it?
I’m under the care of an excellent and dedicated palliative team but despite of that I have suffered a tremendous amount in the last couple of months. The last few weeks and days were particularly brutal. My palliative doctor recently had to admit that she’s already given me everything and there’s nothing more she can do to make me any more comfortable. I don’t want to distress you with the details but death is vastly preferable to the hours when the suffering is most acute, and every day there are endless hours like that. Palliative care, with all the brilliant medications it has, still cannot control all pain and discomfort and cannot therefore stop terrible suffering. I cannot be the only one, and death is not expected for weeks yet because, despite of the cancer, the rest of my body is still young and healthy and refuses to give itself for beaten. This leaves me in a prolonged limbo between life and death, drags out my suffering and there is nothing anybody can do. Only if you witness it (may you never have to), can you understand what I’m talking about.
I repeat it again:
As a society, we pride ourselves of on our humanity. If you had a pet, a dog or a cat, in similar position as I am, you would not hesitate to put it down, to spare the animal unnecessary weeks or months of suffering. Should we not have the mercy to offer the choice to people who are terminally ill and whose symptoms cannot be controlled sufficiently to spare them pain and suffering? It is not beyond the wit of man to devise sufficient safeguards to ensure that this right to choose would not be abused. Nor are we talking about making people undergo euthanasia against their will.
But I think it should be a basic human right to be able to say: enough.
To be able to go into a hospice, surrounded by your family, to whom you could say goodbye while you’re still coherent, while you can still cry and smile for the last time together and while you can give them a last hug. And then when you said goodbye, to be given that one shot (or be allowed to administer it to yourself), that will put you to death, painlessly. So that you can die tranquilly, in dignity, surrounded by love – instead of alone, screaming in pain.
Is that too much to ask?
I had always more ideas for posts than time to write them and now I have run out of time completely. I always assumed that my writing output would eventually catch up with the constant influx of ideas during my retirement but as it turns out I will not live to retire¹. So if you’ve ever enjoyed this blog, here are some of the topics that I was going to write about had I lived longer: you might enjoy delving into them in your free time. You know – some not so well-known books to read, the unlikely life stories of some historical persons of whom you’ve never heard, commentary on poetry, life advice from a distance of millenia… the sort of stuff Waterblogged is all about.
Ancient authors have given us many bons mots. A collection of snappy lines, practical advice or philosophical statements, from the inscriptions over the temple of Apollo in Delphi to the speeches of Seneca would make an entertaining, thought-provoking reading.
Similar Posts that I Did Write:
⇒ The Master of Cold Mountain
⇒ The Dark Side of Life (In Nine Haikus)
If you like travelling and you like history, then reading the diaries of travellers from earlier times is a real treat. To be sure, some of them would make climbing Mount Everest sound dull, but there were plenty out there who could tell a tale. Some of them have been frequently cited on this blog and I intended to write an introductory post to bring great travellers’ tales together.
Similar Posts that I Did Write:
⇒ The Burning Mountain of Huexotzingo
⇒ Thirty Pieces of Silver
⇒ Felix in the Bath
Gerald Brennan was an English author who wrote several very good books about life in Spain in the first half of 20th century and about Spanish history, as well, as the 1936-39 Civil War. After he was demobbed at the end of World War I, Brennan lived in Andalusia for several years and he’s very picturesque descriptions of the area as it then was, not to mention the people and the customs, is well worth reading. I particularly recommend South from Granada. As Brennan also maintained himself on the periphery of the Bloomsbury Group, the visits of his London friends to his house in Spain, occasionally provide a somewhat unexpected and bizarre counterpoint to the rest of the book.
For this particular post I had in mind chapter 14 of Brennan’s South from Granada. The title should speak for itself. 🙂 A treat for hikers.
Literally or metaphorically – which book would it be for you?
Similar Posts that I Did Write:
⇒ They that Go Down to the Sea in Ships
⇒ Books That Transport You
The title says it all: it’s a very unlikely but true story of a minor Hungarian nobleman who had to flee home in the 18th century and ended up becoming king of Madagascar.
Similars Posts that I Did Write:
⇒ Brother Julianus: Quest for the Lost Homeland
⇒ Implacabile: The Corvette that Never Was
A reading list upon the theme of – dark. 🙂
There could be so many variations on this… Night time stories, space stories, gothic horror… the darkness of the man’s soul.
Similar Posts that I Did Write:
⇒ Dark & Moody
⇒ Submarine!
The stories of Jules Verne were not simply cracking adventures but he also described things as yet uninvented: travelling by submarine, going to the Moon, flying aeroplanes…
Similar Posts that I Did Write:
⇒ The Three (Spanish) Musketeers
⇒ Who's Who (Obscure Authors)
A poor lonely Hungarian, without applause or money but inspired with enthusiasm sought the Hungarian native country but in the end broke down under the burden.
Count István Széchenyi
Back in the beginning a 19th century, there was a very poor young man from Transylvania who wanted to find out about the origins of the Hungarians. Where? In Tibet, of all places. He made his way to Ladakh and ended up writing the first Tibetan-English dictionary and grammar. Today, he is considered the founding father of Tibetology… and in 1933, he was declared a boddhisattva (a Buddhist saint, in effect).
The strange and ascetic life of a brilliant and obsessed recluse scholar, Sándor Kőrösi Csoma.
Similar Posts that I Did Write:
⇒ Part of the Folk Process
⇒ The View from the Ivory Tower
⇒ Beats Working in a Bank
If you bothered to read my recent History of Hungary in a Dozen Maps, then you should have an idea of what this post would have been about! 🙂
Could you think of ten proverbs that sums up your beliefs and would work as life advice for your children?
A Similar Post that I Did Write:
⇒ Seven Quasi-Religious Sayings to Annoy Your Children With
One of my favourite military history books is Anabasis, also known as The March of the Ten Thousand by Xenophon. It tells the story of ten thousand Greek mercenaries fleeing all the way from the heart of the Persian Empire after a lost battle, marching across hostile territory, fighting their ways through hostile mountain tribes, suffering hunger and cold, relentlessly pursued by the Persian army. It’s a great story of endurance, of landscapes and of everything ancient Greek. I was really hoping to get the Landmark edition of Xenophon to accompany my Landmark Herodotus – with maps and notes and illustrations and essays in the appendices. It was to be published last November but, perhaps because of coronavirus, it’s now not going to published till next November. Too late for me… but not for you.
Similar Posts that I Did Write:
⇒ Save the Trinidad (The Unwritten Biography of Cayetano Valdés)
⇒ Hero Under the Death Sentence
⇒ The (Novel) Life of Britain's Greatest Frigate Captain
More best of Herodotus – Of course!
Don’t be frightened by the size of the Histories. I bet you read lots of longer books (which were a lot worse too, like perhaps, Game of Thrones?) All the good stories are there in the Histories, you just have to find them. The trick is to pick it up and dip into it every now and then. But how I would have liked to have written the definite reading guide to the most entertaining stories of Herodotus!
Similar Posts that I Did Write:
⇒ The Best Stories of Herodotus (And Why You're Going to Read Them)
⇒ An Evening with Herodotus
…many others.
There are authors you just have to keep going back to. Like Herodotus above. The likes of Felix Fabri, Bernal Díaz del Castillo, John Smith (he of Pocahontas fame), and others. Some of them had appeared on the blog already, some, like John Smith, never got beyond my notes. But I would have liked to write more about them all, because they tell cracking tales!
We’ve got so many really entertaining ones – and they are so little known!
Notes:
¹ I'm terminally ill and have only a very short time left. You can read a little about it in my post Open Letter To My Oncologist
My apologies: Lockdown Diaries III went a shameless eleven days without posting about the latest miseries caused by coronavirus. This, (surprisingly!), was not due to the lack of happenings: we’ve now got a Tier 5 introduced now on top of all the other tiers, we cycled through several reopening date for schools until they will now only reopen after February half-term… and so on.
There was also the whole delightful shebang known as Brexit; with or without an agreement, by now I’m not sure which it came out in the end, nor do I care any more. We can’t do anything and go anywhere anyway. Life has ground to another complete halt and for some more of us, it will never start up again.
Last March, as the coronavirus cases started to rise, we all had to put our lives on hold – to protect the NHS.
As a society, we went through a lot in order to protect the NHS: People lost their jobs, children didn’t go to school, non-urgent¹ medical procedures were postponed, holidays were cancelled, weddings repeatedly rescheduled. We let our loved ones die alone and unvisited in hospitals, care homes and hospices; we let funerals pared down to such brutal basics that they provided absolutely no comfort to the mourners.
But for what? Coronavirus is still rising. We’re no better off than we were last March. We’ve undergone all this s**t for no benefit whatsoever. Except of course – we did protect the NHS.
Because it’s not for the benefit of the dying, who are facing, on a daily basis, the unpalatable choice between receiving palliative care at the cost of never seeing their loved ones again or struggling with their end-of-life symptoms alone at home, under palliative remote control.
Which do you prefer, my dear:
The crisp, white, empty beds in hospices all over the country bear mute testimony to the answer.
On top of all the months they have already spent shielding alone in their bedrooms, wistfully gazing out of their windows, the terminally ill do not want to continue to also die alone.
Notes:
¹ What is a non-urgent medical procedure anyway? Surely, you either need the procedure (in which case it's urgent, so that you can stop suffering and be healed), or you don't need the procedure at all (in which case it should have never been suggested to you in the first place).
What with people not being allowed to visit their loved ones for Christmas – except if the loved one was dying – and, while we’re at it, not being allowed to get marry either – except if the bride or the groom was dying – coronavirus made for a pretty miserable Christmas for lot of people.
(Like those lorry drivers for example stuck in the UK in their lorries.)
So… here’s a reading list to consider while you’re stuck in your freezing lorry, in a hospital/hospice/care home without visiting hours or alone in a flat with the enormous turkey that the family who were meant to eat it can only admire via Facetime…
As a particular favour to all those trapped lorry drivers who cannot just pick a book off the shelves, most of these books are old enough and famous enough to be available for free online reading on Project Gutenberg! 🙂
Since we became the pariahs of the world, with countries refusing flights and ferries from the UK, there developed a long queue of lorries outside Dover – all those lorries that can no longer drive onto the ferries that no longer sail… The hardship for the British drivers is one thing but I’m really sorry for those foreign drivers who were on the last leg of the journey back home in time for Christmas and instead look set to spend their Christmas in the freezing cabins of their lorries, far from home and lacking even basic amenities, like toilets, although one would like to hope that the authorities will sort something out for the stranded drivers ASAP, if they haven’t done so yet!
It seems appropriate to read books about miserable castaways, shipwrecked and marooned sailors and the like and luckily world literature has plenty to choose from!
Links:
⇒ Ten of the most vivid accounts of being marooned in literature (The Guardian)
⇒ 6 Famous Castaways (History)
Here we go again.
The government actually had to invent a tier 4, so that we could be put into it.
Christmas is officially cancelled and the rats are flying the sinking ship. Er… I mean people are abandoning London (and taking the virus with them), although personally I’m not willing to criticise anybody without knowing their circumstances – let each settle with their own conscience whether their journey is justified. I can imagine circumstances in which it would be; like visiting your dying mother, for example.
The government is disgusted, of course. I’m not sure what they expected, announcing at 4 pm yesterday that nobody is allowed to go and see their family for Christmas, with the rule coming into effect from midnight: Predictably, everybody mobile enough packed their suitcase and boarded the next train out.
Links:
⇒ You can read the official rules for this latest lockdown here. (And yes, it does say you can still visit your dying mother. That's about the only thing you can do, in fact.)
Dear Doctor,
I spent the last week organising the photos I took in the summer and early autumn. My husband and I went hiking and we took the children to a couple of short holiday breaks: to Lyme Regis, to Jersey and to Gibraltar.
On our last fling in the October half-term I still managed to chalk up 18 kms on the Rock in one day and got to see the monkeys and the tunnels, the cave and the view towards Africa – the closest I’ve ever got to another continent… 18 kms, over the course of a whole day, with lots of rest; I was quite impressed with myself although it’s a far cry from the times when I could hike 30 kilometres a day on the South West Coast Path, only three years ago, without collapsing at the end. Of course, that had been before I met you. Just two months before I was diagnosed with final stage cancer.
Jersey was beautiful. We hiked the north coast ending on the beach in Plémont Bay, going for a swim and rinsing off the sea salt from our skin under the waterfall in a cave. There were some beautiful sunny days and we saw dolphins in the sea jumping around our boat. This is the one thing we can thank coronavirus for: we’d never have gone to Jersey if we could have gone to Spain or Italy instead.
Coronavirus was a real blow for us this year, as you can imagine. I was relatively well and I knew I was running out of time, yet I couldn’t do what I wanted to do: couldn’t travel, couldn’t visit my family, couldn’t even go a museum or to eat out. I was stuck in our house in London, in lockdown for months; so much about enjoying the last year of my life. The November lockdown was particularly galling: after we returned from Gibraltar, I had literally nothing else left for me in life but going swimming while I still could. Instead, once again I was forced to sit at home, while my strength slowly ebbed away. I watched the leaves on the trees in the garden turning rusty; mellow hues of yellow and red mingling with the still surviving bright green reminded you that autumn was here. I listened to the horrid screeching of the crows. Nature was slowly dying, just like I am; I would have liked to see the snowdrops come out next year.
The swimming pool has since reopened but I’m no longer able to go to swim. So I’m sitting here, listening to the rain, trying to organise the photos and remembering Jersey and Gibraltar, the fossil coast in Lyme Regis and swimming in the sea. Remembering the laughter of my daughters.
Our last holidays.
Doctor, I would really like to thank you for these holidays because without the treatments that you prescribed me in the last three years I would not have been alive to go on them.
I would like to thank you; but the words stick in my throat. Because if it was up to you, I wouldn’t have been able to hike along the north coast of Jersey; I would have not been able to swim in the sea. I would have been in hospital, choking while I was being administered a chemotherapy agent that I became dangerously allergic to many months ago; I would have been lying in bed, looking out at the sky through my bedroom window, unable to get up; or I would have been vomiting convulsively into the blue wash up bowl that three years ago found its way from under the kitchen sink to under our bed and never had a chance to go back. Or, possibly, I’d be screaming hysterically at my husband or my daughters, half crazed with this unspeakable suffering that your treatments had repeatedly inflicted on me.
Each time when your treatments reduced me to a quivering helpless blob of jelly, I scraped myself off the floor, rebuilt my muscles and forced my dying brain cells to reanimate themselves. Fourteen times through fourteen rounds of chemotherapy. Fourteen weeks when I was too weak to rise from bed, to hold a book or to sit without support on the toilet. Twenty-eight weeks when I could only negotiate the stairs in our house on all fours. And in between? Trying to raise the children, trying to pretend that I was still a wife, working beyond my strength trying not to lose my job. Because even with the NHS, cancer is expensive. And if you’re under 55, you’re not even entitled to ill health pension although your boss is entitled to dismiss you if you’re too ill to go to work.
When we started all this, you told me that all my hair would fall out due to the chemo but it would grow back. You were right: it did grow back. Sort of. I always had thick, abundant, healthy hair; what grew back was not its original colour, not its original texture – and incidentally, was only half as much. The second course of chemo thinned that out to only a third of the original amount of hair; and it’s nearly all grey now. You forgot to mention that my eyebrows, eyelashes, and all other body hair would also fall out, including the hair inside my nostrils; like my hair, they didn’t grow back fully either. Have you ever thought about how useful eyelashes are? They keep dust and rain out of your eyes. And the hair in your nostrils! Such a laughable thing but when you haven’t got any, you constantly have snot drooling down onto your lips because no matter how fast you whipped that tissue out, you were too slow.
Chemotherapy kills all fast growing cells; that’s why my hair fell out. That’s why my muscles were destroyed. That’s also why my brain cells died. That is why, while writing to you, I have to keep going back and look in the dictionary for the correct spelling of all those words that the spell checker underlines with little red dots. I used to be a linguist, you know. I taught myself several languages but now I regularly mix up their and they’re and there.
It wasn’t just the chemotherapy: you gave me other treatments in between. You told me I couldn’t have immunotherapy as it had a high chance – 2 or 3 % I think it was – of killing me outright. I did wonder why that mattered given that you had told me five minutes earlier that you couldn’t cure me? Instead, you prescribed me hormone therapy: you said on the average it gave people two years of life, with hardly any side effects. It lasted just about half a year, but it wrecked my knee joints and my back, aged me about five years physically, and in company with the steroids, it made me grow a faint beard and a moustache.
The day after receiving the death sentence from you, I joined a local gym which had a swimming pool and signed the one-year contract. I’m afraid I lied to the gym manager; I claimed to be healthy. I was wearing a wig at the time, but there was no reason for her to suspect; I looked so young. And lying saved so much hassle; I’ve became quite adept in it since this ridiculous coronavirus hysteria started, so that I would not be denied entry to hotels, pools and restaurants on account of being ‘clinically extremely vulnerable’. Not that you would have minded me returning to taking exercise. And you were always willing to accommodate me when I asked if I could fit a short family holiday in between appointments, for which I cannot thank you enough – those holidays were what kept me sane.
In the past three years I had been through some horrible suffering caused by the cancer; and some quite as horrible suffering caused by your various therapies. I don’t blame you for my suffering: you did your best. It’s just your best wasn’t good enough.
I’ve got genetic cancer. I was diagnosed within ten days of the first symptoms manifesting and yet by then it was metastatic and in its final stage. You should have called it terminal from day one but you doctors seem very reticent of using that word. It’s only terminal when the patient’s got less than six months to live. Of course, I had less than six months to live at that point, but you had treatments to offer, so the word didn’t appear until this June. Thinking about it, you still haven’t used it.
We’ve got three years of history together: longer than some marriages last. I remember some inconsequential little details that you probably don’t recall. Like when you told me in the beginning that I had 50 % chance to survive for five years. I looked it up since: it’s 17 %. Or when you asked the nurse in the hospital why I was crying after you casually told me that my cancer was almost certainly final stage and almost certainly genetic. Or when you told me that you couldn’t cure me. I remember that quite well, because it was my husband’s birthday; I’m afraid the news quite spoilt it. It was at the usual pre-chemo appointment; this was to be my eighth round of chemo; I thought I knew the routine by then. But you just came out with there being no point in me having the chemo as it had stopped working… And do you remember when I turned up for my appointment and waited 4 hours in your waiting room, only for you to decide that you didn’t need to see me and not even having the courtesy to come and explain why not? I was rather annoyed then; life is so short and time is so precious. My time especially.
But the real disappoint was my last treatment. The PARP inhibitor: a brand new treatment barely licensed and supposedly particularly effective for genetic cancers. Not that it cures them, of course. But it bought some people on the clinical trial three years of life. Three years! You can almost finish bringing up your children on that.
You first told me of the PARP inhibitor when I asked for genetic testing back in December 2017. I remember the occasion well, because I had to insist to get that genetic testing; you told me that it’s not done unless there were two previous cases of the cancer in the family and I only had my mother. Unfortunately, I knew nothing of her family; for all I know, all the females died young of the same cancer. But I have two daughters and I insisted that I be tested; and when I told you that my mother died aged 39, you agreed. I myself was 49 then and my younger daughter 12. The same age I was when my mother became ill.
The PARP inhibitor was supposed to give me one to three years of good quality life. I went through so much to become eligible to receive it!… It’s very well tolerated, you said; but within two days of starting on it, I experienced chemotherapy levels of nausea which took over a month to get under control. Nobody in our hospital ever had to come off the PARP inhibitor on account of anaemia, you said a month later, when I first presented with a life threatening level of anaemia. We’ll find you the right dose, you said, and it’ll be just as effective. I expect you to be on it for years, you said.
Less than six months, several dose reductions and blood transfusions later, you had to conclude that not only the PARP inhibitor nearly killed me and made my life a misery but apparently it never worked at all. Oops.
That was when you recommended more chemotherapy. A third course because I responded “well” to the previous two. You said it could give me a year; maybe more. It was June 2020, two years after you told me my cancer was incurable, almost to the day.
“Well” of course is a relative term both when we’re talking about ‘responding well to treatment’ and ‘the treatment being well-tolerated’.
The first chemotherapy you gave me had 80 % chance of working. I remember this because I asked you what if I was one of the 20 % and you said we were not going to talk about that now. You said that often in the past three years; we never talked about what would happen when your treatment didn’t work. You always simply said that you had lots of other treatments. I was never an assertive person; and although it did rather bother me that I was expected to make treatment decisions without having the full picture, I never rebelled.
The second chemotherapy, which I had to undergo when I became disqualified for the clinical trial to get the PARP inhibitor owing to a very nasty complication that you forgot even to warn me about, only had 60 % chance to work.
But I was lucky. I responded “well” to both: that’s to say, each chemotherapy bought me just about half a year, which is the minimum for it to be considered a success. Not that the cancer ever went into remission, oh no, not that; but it was knocked back and stopped growing for half a year. I could have even enjoyed those half years if I was ever allowed to recover from the side effects of chemotherapy. Instead, each time I immediately had to go onto another debilitating therapy: hormone therapy first, then the PARP inhibitor.
And so you now recommended me a third course of chemotherapy. You said that if I didn’t take it, I had less than half a year to live; but if I did, you were confident I could live at least a year; it could be followed by a fourth and a fifth – yes, there’s even a fifth! – course of chemotherapy. You described this third course of chemo as well tolerated and with a good success rate.
Well, the ‘good’ success rate is 30 %.
As for well tolerated: unfortunately you described every treatment I underwent so far as well tolerated. Perhaps you’d tolerate them well; for myself, I can see little difference in the amount of suffering the cancer caused me and the amount of suffering your treatments caused me.
When I objected that I’m now seriously allergic to one of the chemotherapy agents involved, you said I could be admitted to the hospital for chemotherapy, instead of having the chemo as an outpatient.
Well, I’ve been on the oncology ward before; I know what it’s like. There’s always somebody screaming in pain or having hysterics at 4 o’clock in the morning; I get woken up every 3 hours throughout the night to have my blood pressure taken although never in my entire life, and that includes the moment when I was told that I had incurable cancer, was there anything wrong with my blood pressure. And when I said to the nurse, I don’t mind you taking my blood pressure if I’m awake but if by some miracle I’m actually managing to get some sleep please, please don’t wake me up to take it – well, then I got woken up so that I could confirm that I really didn’t want my blood pressure taken at 3 o’clock in the morning. Kafka wouldn’t have been able to think it up.
You said on day 1 I would go to hospital and have my first drug and be ill for a week; on day 8 I‘d have the second and be ill for another week; on day 21 we’d start all over again. To repeat six times; as a minimum I’d be very unwell for two weeks out of every three for the next half year. And I know from experience that chemotherapy side effects are cumulative: I finished the second course of chemotherapy more than a year ago now and I still continue getting stupider. My brain cells are still dying.
So I said, thank you, doctor, but no, thank you.
You seemed to take it quite well, at first. We agreed I would think about it and discuss it with my family, and you’d phone in a week’s time. You phoned a day later than you said you would, when I was not expecting the call and as a consequence I had difficulty to collect my thoughts but my decision was unchanged. When I explained I wanted this summer without doctors, you tolerantly agreed; then tried to schedule me for a scan and another appointment in mid-August. After some haggling, we agreed to put it off till September.
I didn’t really want to have the scan or the appointment in September. By now I’m allergic to the dye used in the scan too and I expected that at the appointment you would try to pressure me into accepting chemotherapy – but my husband persuaded me to do this one more thing. For all of the family’s sake, including myself, of course.
At this last appointment, everything turned out to be as I expected. The “could live a year” from June became “years” practically guaranteed by September. You were very persuasive; gentle but firm. I came out of your office totally bewildered and wondering if I fatally misunderstood something in June. If I had thrown away years of good quality life. If in fact I could have lived three more years to see my older daughter to gain her master’s and to bring my younger daughter to the brink of adulthood before I keeled over.
I didn’t of course. I checked with my husband as to what you said to him in June; I checked with my GP; I checked online in medical studies. The chances of me living years, no matter how much chemotherapy I agree to, are negligible. But you would happily give me chemotherapy till the day I die.
Doctor, you cannot cure me. Admit it and move on; that patient sitting outside your office right now – perhaps you can cure him.
There are studies about this, you know. About doctors misleading patients intentionally or unintentionally. Doctors in denial. Doctors unable to tell the patient that she’s dying and that there is no more they can do. Doctors interpreting everything in the light of the most possibly positive outcome and ignoring all the negative statistics.
Doctor, I say this not with anger but with the best intentions: get some training in how to deal with terminally ill patients. I know your job is hard but believe me, it’s not as hard as being terminally ill. Between you and me, you are the lucky one.
Had you been honest with me from the beginning and gave me a genuine say in my own treatment, perhaps I’d have accepted your advice for one more course of chemotherapy. And if it worked, perhaps I’d have lived a year longer. But you have never been honest, and I don’t trust you any more.
Doctor, please listen carefully: you can’t treat a terminally ill patient the same way as you’d treat somebody who has a chance to survive. The terminally ill have different priorities. Survival is no longer an option. I told you what I wanted in so many words; why didn’t you listen?
If I took your advice in June, I would have been robbed of four months of happiness. Four months without needles; four months when I could sit out in the garden in the sun instead of sitting in your waiting room, four months when I could swim in the sea, go hiking and play Scrabble with my family. Four months of parenting… Four months of life, doctor. That’s what you would have taken away from me; and that was all that I had.
If I accepted your recommended third – and fourth, and fifth – course of chemotherapy, I would be left completely destroyed both physically and mentally. Living with chronic cancer is already bad enough: it destroys both the patient’s personality and her body. It puts unbearable strain on her relationships: even the strongest family members, friends and colleagues can crumble in the end and have to abandon the patient to preserve their own sanity.
For me, it’s important to die while I’m still me: while I can still laugh, with hair on my head, with my face recognisable. I want my daughters to remember me mooching around the Greek temples of Agrigento in Sicily and climbing to the crater or Vulcano, a mere two weeks after my last dose of chemotherapy – a triumph of will despite my destroyed muscles; I want them to remember me as I stood on the cliff overlooking Plémont Bay in Jersey, at the end of a day’s hike, in walking boots, with rucksack on my back, the last September of my life. I don’t want them to remember me as a hairless, wrinkled, shrivelled shapeless form on a hospital bed, with tubes leading out of every orifice or as a shrieking, intolerant harpy.
You told me I should expect to die before Christmas; at the moment it looks as if I might make it into January. For my family’s sake, I hope I will; dying at Christmas is shit timing. And we both know that I will suffer a lot more before I die. If I was a dog, you wouldn’t hesitate to put me down to spare me suffering but because I’m a human being, I’m denied euthanasia.
Have you thought about that yet, doctor?
Wishing you a long and healthy life,
Your Dying Patient
In London, you can come across random poetry in the most unexpected places. Poetry on the Tube is well known by now and has been copied by the public transport systems of other cities, such as Budapest. But how often do you walk down a pavement and find that you’re walking over poetry?
London South Bank:
Richard Sheridan was a playwright at the end of the 18th century; and his comedies still play on London’s stages… well, when they are not closed for coronavirus, that is.
After an inordinate delay, the bus at last turned the corner and pulled up alongside the pavement. A few people got off, a few others got on. I was among the latter. I got shoved onto the platform, the conductor vehemently pulled a noise plug and the vehicle started off again. Whiel I was engaged in tearing out of a little book the number of tickets that the man with the little box was about to obliterate on his stomach, I started to inspect my neighbours…
(Biased from Exercises in Style by Raymond Queneau)
And here’s my effort:
Tuesday, 1 December 2020
Thank God! The bloody lockdown is finally over! Well, sort of. But I am declaring it to be over, and never mind the remaining restrictions. The main thing is, as far as I’m concerned, that tomorrow my swimming pool will open again and I don’t care about the rest. Of course, the government – idiots, the lot of them – might yet change their mind and put us back under lock and key again.
But I’ll deal with that when it happens!
Over to you. 🙂
Writing Challenge:
Just a reminder that you can join in this writing challenge, based on Exercises in Style by French author Raymond Queneau, by writing an entry (post it in the comments section below or, if you prefer, on your own blog and link to my relevant post) using the prompt from Queneau each day.
More information in the original post here:
⇒ Lockdown Diaries II, Day 6: With Raymond Queneau
Have fun!
Recommended reading:
⇒ Exercises in Style by Raymond Queneau
I beg to advise you of the following facts of which I happened to be the equally impartial and horrified witness.
Today, at roughly twelve noon, I was present on the platform of a bus which was proceeding up the rue de Courcelles in the direction of Place Champerret. The aforementioned bus was fully laden – more than fully laden, I might even venture to say, since the conductor had accepted an overload of several candidates without valid reason and actuated by an exaggerated kindness of heart which caused him to exceed the regulations…
(Official Letter from Exercises in Style by Raymond Queneau)
And here’s my effort:
Sunday, 29 November 2020
Dear Sir,
I wish to bring to your notice the following facts relating to the – shop selling ethnic food in the neighbourhood of -.
Sir, this shop occupies an extremely small floor space and in accordance with the COVID restrictions currently in place in the said locality, is forced to limit the number of shoppers on the premises. On the 29th of November, this resulted in an exceedingly long queue outside of the aforementioned shop.
I’m happy to inform you that all customers, none of whom were English, queued outside in an exemplary British manner, waiting for their turn without grumbling. I myself witnessed this, being part of said queue for fifteen minutes, with my younger daughter, whose behaviour upon this occasion proved a credit to her upbringing.
In the sincere hope that the COVID restrictions will ease in the very near future,
Mrs So-and-So
Over to you. 🙂
Writing Challenge:
Just a reminder that you can join in this writing challenge, based on Exercises in Style by French author Raymond Queneau, by writing an entry (post it in the comments section below or, if you prefer, on your own blog and link to my relevant post) using the prompt from Queneau each day.
More information in the original post here:
⇒ Lockdown Diaries II, Day 6: With Raymond Queneau
Have fun!
Recommended reading:
⇒ Exercises in Style by Raymond Queneau
The general effect is green with a white roof, oblong, with windows. It isn’t as easy as all that to do with windows. The platform isn’t any colour: it’s half grey, half brown if it must be something. The most important things is it’s full of curves, lots of esses as you might say…
(Visual from Exercises in Style by Raymond Queneau)
And here’s my effort:
Saturday, 28 November 2020
From my bed the first thing I see in the morning is the curtains. They are red and the light, even winter light, makes them translucent, making the whole bedroom glow in soft warm red.
The room I spent most of the day on other hand was anything but softly glowing red. It is a little dark, because the window is partially obscured by the furniture; it’s such a small room that it only has room for one item of furniture, which is a high bed, with the desk and a one-seater sofa fixed underneath and this is straight in front of the window. The sofa is blue as are the curtains.
It was such a grey day outside that I had the desk light on most of the day and in the afternoon, when I curled up with a book on the sofa, I turned on the colourful LED lights that are stringed along under the bed. It cheered the room up a bit.
Over to you. 🙂
Writing Challenge:
Just a reminder that you can join in this writing challenge, based on Exercises in Style by French author Raymond Queneau, by writing an entry (post it in the comments section below or, if you prefer, on your own blog and link to my relevant post) using the prompt from Queneau each day.
More information in the original post here:
⇒ Lockdown Diaries II, Day 6: With Raymond Queneau
Have fun!
Recommended reading:
⇒ Exercises in Style by Raymond Queneau
You ought to put another button on your overcoat, his friend told him. I came across him in the middle of the Coeur de Rome, after having left him rushing avidly towards a seat. He had just protested against being pushed by another passenger who, he said, was jostling him every time anyone got off…
(Retrograde from Exercises in Style by Raymond Queneau)
And here’s my effort:
Friday, 27 November 2020
I had just spent a couple of hours this afternoon tagging family photos in the computer, before I settled down to write today’s diary entry. It took longer than planned because this had been a holiday in Seville at Easter, a few years ago and I got seduced by some of the videos. I remember we got up at 3:30 am on the last day in order to see the procession of Jesús del Gran Poder go by – and the evening before we had been out till late at a flamenco show…
Earlier the postman brought a pushy letter from our health service, telling me – yet again – to protect them by not being ill. Yes, sir! I’ll just snuff it then and trouble the undertaker instead!
Before I got annoyed by the letter, I had spent the morning going through the motions of a boring weekday in lockdown. Yawn. The most interesting event of the morning was, frankly, seeing Young Friend of the Elephants off to school…
Over to you. 🙂
Writing Challenge:
Just a reminder that you can join in this writing challenge, based on Exercises in Style by French author Raymond Queneau, by writing an entry (post it in the comments section below or, if you prefer, on your own blog and link to my relevant post) using the prompt from Queneau each day.
More information in the original post here:
⇒ Lockdown Diaries II, Day 6: With Raymond Queneau
Have fun!
Recommended reading:
⇒ Exercises in Style by Raymond Queneau
A few of us were travelling together. A young man, who didn’t look very intelligent, spoke to the man next to him for a few moments, then he went and sat down. Two hours later I met him again; he was with a friend and was discussing clothing matters.
(Litotes from Exercises in Style by Raymond Queneau)
Well, I have to admit that the title of this particular entry by Queneau had me baffled. I always prided myself on my vocabulary, English included, but litotes was not a word I’ve ever came across before and the entry was not giving me any genuine clue (although with hindsight the first sentence is a clue). I had to resort to the dictionary:
litotes, noun
ironic understatement in which an affirmative is expressed by the negative of its contrary (e.g. I shan't be sorry for I shall be glad).
So there you are. And here’s my effort:
Wednesday, 25 November 2020
I wouldn’t call today a boring day… It was positively interesting. Can’t complain, really.
I got up, had breakfast, worked at the computer. For variety on a working day that’s not bad.
The lunch was nothing out of the ordinary: just a creative combination of some leftovers, but quite delicious.
The weather? Mustn’t grumble. It was positively balmy. You could almost see the sun… if it wasn’t for the thick layer of clouds.
Over to you. 🙂
(In my opinion, this one was surprisingly difficult!)
Writing Challenge:
Just a reminder that you can join in this writing challenge, based on Exercises in Style by French author Raymond Queneau, by writing an entry (post it in the comments section below or, if you prefer, on your own blog and link to my relevant post) using the prompt from Queneau each day.
More information in the original post here:
⇒ Lockdown Diaries II, Day 6: With Raymond Queneau
Have fun!
Recommended reading:
⇒ Exercises in Style by Raymond Queneau
Summer S
long neck trod on toes
cries and retreatstation button
meeting(Haikai from Exercises in Style by Raymond Queneau)
Well, here’s my effort:
Tuesday, 24 November 2020
Morning light
catching up with friends
sitting outside
afternoon gloom
tea ‘n’ smiles
Over to you. 🙂
Writing Challenge:
Just a reminder that you can join in this writing challenge, based on Exercises in Style by French author Raymond Queneau, by writing an entry (post it in the comments section below or, if you prefer, on your own blog and link to my relevant post) using the prompt from Queneau each day.
More information in the original post here:
⇒ Lockdown Diaries II, Day 6: With Raymond Queneau
Have fun!
Recommended reading:
⇒ Exercises in Style by Raymond Queneau
Quacking and letting off, the S came rasping to a halt alongside the silent pavement. The sun’s trombone flattened the midday note. The pedestrians, bawling bagpipes, shouted one of their numbers…
(Auditory from Exercises in Style by Raymond Queneau)
Well, here’s my effort:
Sunday, 22 November 2020
Woke to the loud buzzing of a bumble bee as it kept banging against the window pane behind the curtains. Out on the field behind the house a dog barked. I turned over and put the pillow over my head to drown the noises out but it did not work. I heard the splashing of the shower from the bathroom next door. Then phone pinged: the taxi to pick my sister up to take her to the airport had been allocated. I got up.
In the kitchen the kettle gurgled as the water came to boil. I turned on the coffee grinder, it sounds like a tiny pneumatic drill; suddenly I couldn’t heard a word that was said on the radio.
Then came breakfast: the ticktocking of the toaster, the banging of spoons on the shells of the boiled eggs, the tinkling of knives and forks on the plates. Dumped the plates and cutlery into the sink, and opened the tap; the water splashed over the plates. Then the taxi driver pinged my phone again to let us know he had arrived.
My sister dragged her suitcase down the stairs, bang-bang, on each step. We said good-bye, she got in the taxi, slammed the door. The car moved off quietly. We shut the front door and put the chain on. It rattled.
Over to you. 🙂
Writing Challenge:
Just a reminder that you can join in this writing challenge, based on Exercises in Style by French author Raymond Queneau, by writing an entry (post it in the comments section below or, if you prefer, on your own blog and link to my relevant post) using the prompt from Queneau each day.
More information in the original post here:
⇒ Lockdown Diaries II, Day 6: With Raymond Queneau
Have fun!
Recommended reading:
⇒ Exercises in Style by Raymond Queneau
BUS CROWDED STOP YNG MAN LONG NECK PLAIT ENCIRCLED HAT REPROACHES UNKNOWN PASSENGER NO APPARENT REASON STOP QUERY FINGERS FEET HURT CONTACT HEEL ALLEGED PURPOSELY STOP YNG MAN ABANDONS DISCUSSION FOR VACANT SEAT STOP …
(Telegraphic from Exercises in Style by Raymond Queneau)
Well, here’s my effort:
Saturday, 21 November 2020
UP LATE QUICK BREAKFAST STOP PLAYED SCRABBLE WITH SISTER SHE WON STOP LONG LINGERING LUNCH WITH WINE AND NY CHEESECAKE STOP LAZY AFTERNOON PLAYING COMPUTER GAMES STOP WEATHER STINKS BRING CHEESE STOP
Over to you. 🙂
Writing Challenge:
Just a reminder that you can join in this writing challenge, based on Exercises in Style by French author Raymond Queneau, by writing an entry (post it in the comments section below or, if you prefer, on your own blog and link to my relevant post) using the prompt from Queneau each day.
More information in the original post here:
⇒ Lockdown Diaries II, Day 6: With Raymond Queneau
Have fun!
Recommended reading:
⇒ Exercises in Style by Raymond Queneau
Midday was struck on the clock. The bus was being got onto by passengers. They were being squashed together. A hat was being worn on the head of a young gentleman, which hat was encircled by a plait and not by a ribbon…
(Passive from Exercises in Style by Raymond Queneau)
Well, here’s my effort:
Friday, 20 November 2020
I was woken up late by the ringing of my mobile – I was being called by the nurse who had been told by the doctor to call me. I was asked if I was feeling well and she was told that I was feeling as well as could be expected under the circumstances.
I was made breakfast by Mr Anglo-Saxonist (a boiled duck egg and soldiers); and all the food was eaten by me. Then the breakfast dishes and crockery were put into the dishwasher, which was run.
Overtaken by laziness, I spent the next few hours playing SimCity.
After lunch, the Scrabble board was got out and laid on the table and a mind-boggling game of Scrabble developed in Hungarian which was won by my sister…
Over to you. 🙂
Writing Challenge:
Just a reminder that you can join in this writing challenge, based on Exercises in Style by French author Raymond Queneau, by writing an entry (post it in the comments section below or, if you prefer, on your own blog and link to my relevant post) using the prompt from Queneau each day.
More information in the original post here:
⇒ Lockdown Diaries II, Day 6: With Raymond Queneau
Have fun!
Recommended reading:
⇒ Exercises in Style by Raymond Queneau
Waterblogged 