23/7/10
Made two calls to the police last night admitting that my car had been found. Spoke to a young woman at a police station somewhere and a man in a call centre. She said that people lose their cars all the time. He said he had once done it himself, and removed the report from their computer system.
My new friend Val whom I met during the horrors of the Victor Bonney Ward, told me she has had trouble finding hers. “They are all red,” she says, “and all look the same.”
She said that last winter she spent two “freezing hours” digging her car out of the snow, diligently scraping off the ice and scrubbing it down until she was blue - only for a neighbour to come out and ask her what she was doing as it was his car!”
Despite this, I still feel a real idiot.
Take a home made quiche along to Maggie’s as a contribution. There is a lunch there on a Friday. A convivial atmosphere, mainly from the ladies who give out information and generally buck everyone up.
The cancer sufferers gathered at the table were mostly more subdued. They included elegant women, many from Europe. They didn’t look as if they were ever great eaters and sat nibbling their food like little mice.
Not great eaters but they liked talking about food, as if it is the enemy. The main topic seemed to be the things they have forbidden themselves.
“I don’t have any dairy,” one says. “I’m lactose intolerant.”
“I don’t have any dairy,” says Maria, “But in the morning I have cereal with hot soya milk.”
She emphasised the “hot,” looking at me meaningfully. She had obviously read somewhere or been told, that hot milk is a cure for cancer. It isn't actually said, but that is what all these dietary privations are about.
“No sugar,” says another, “cancer feeds on sugar.”
This doesn't seem to include the new "super" jars of honey which are invested with almost magical powers and sold in health food shops at upwards of £15 a jar.
To try to get into the conversation I mentioned some research at Harvard Med School showing that cheese stops the formation of tumours in rats.
The woman next to me, a sensible Scots lass, says she eats most things and needs to eat food that prevents anaemia. I suggest liver having just seen some on Master Chef, looking delicious slathered in sage butter.
She frowns. “Liver is a secondary organ of the body,” she says knowingly. What does that mean? “All the bad stuff gets flushed through there,” she says. “It’s like chicken skin, it’s full of bacteria.”
There are only two men present, one about forty five and handsome, the other aged ninety. They are chatting and laughing and of course tucking in. The old boy had brought along chocolate brownies and Mr Kipling’s fruit pies. No one touched them. One of the women helpers brought a cream and lemon roulade, but it also sat untouched.
“Sugar,” whispers the Scots lady, the way some people would say, “cocaine.”
“Well they are girls,” says the good looking man, laughing.
Girls it seems, apart from all the other issues around food, are particularly susceptible to rumour. Their stories culled from the internet and women’s magazines remind me of the tales I used to hear when I lived in Poland in the time of the communists. People were living in fear, hungry for news but unable to get anything reliable to calm or confirm their fears. I came across the power of rumour again when I worked in a prison. Everyone was on edge, some living in dread and these stories, whispers in the dark, sometimes caused alarm but also bought comfort by confirming their view of the world and thereby giving some feeling of control.
I do it myself with superstitions.
On the way home I stopped off in Tesco and bought a Vogel loaf. Never done that before as I was always put off by the name, which sounds so Germanic, a cross between Wander-lust and yodelling. But the label said it contained valuable, life enhancing, health boosting seeds and oils.
At the automatic check-out the computer screen described it as “brown bread.”
Oh God – brown bread – dead. Not a good omen.
Got home to find two urgent calls left by the police. One from early in the morning the other sent at lunch time, telling me that they are busy looking for my car, and giving me a “crime number.”
Obviously no messages were passed on from last night. I wonder if the police are by chance related to the NHS?
Tuesday, 27 July 2010
Friday, 23 July 2010
Frying my brains
Chemotherapy is starting to fry my brains. Yesterday I lost my car and had to report it missing, only to find it parked in a nearby street. I wandered up the wrong street looking for it, got to the end of the road and wondered where I was. I keep dropping things, forgetting small tasks, but the worst aspect of the chemical on-rush is sudden dips into depression.
Although the cause is new, the routes back into depression are old; roots might be a better word for them.
These twisted old membranes are made out of failure, non-achievement and worse, things beyond my control which seem to have wrecked my efforts.
I picked up a magazine this week, 19/7/10, and saw a columnist whom I used to know when she was a mere secretary. She described how she had never worked hard at school, got lousy A levels and didn’t bother about university.
“People think I went to Oxford because I’ve got a posh voice,” she brayed like a parvenu pal of Bertie Wooster. Worse, she went on: “to get on in journalism all you need is nepotism, charm, and a bit of talent and determination.”
How would someone in another profession, say a doctor or a lawyer feel reading those words, although they are probably true to a certain extent of other professions too. I remember those rich girls coming in to national journalism somewhere in the mid 90s. When I first got there, in the 1980s, there was a window open for people like me – from comprehensives, with no rich uncles and too desperate to have much charm.
That Thatcherite window has closed now, and to read this girl wallowing and gloating in nepotism made me feel quite low.
Set off for the Ealing Greek Taverna, where beleaguered Father Bill now has a coffee morning which the diocese want to call an “alternative church.”
He was looking a bit ragged, the usual C of E vicar’s outfit; unkempt hair, battered old sandals, torn cotton trousers and charity shop jacket.
The London diocese is the second worst paid the country. Vicars live on less than £22,000 which means there are few happy, well adjusted family men doing the job. The idea of this poverty is to employ more vicars at a lower rate, “to increase evangelism.”
I told him about my agony over the new growth of English snobbery, a cancer that never seems to be cured.
He wasn’t interested as he is planning his November Guy Fawkes night.
“I have already had one parent offer to be burned on the bonfire,” he said.
“He said he would do it in exchange for getting his child into a good C of E primary school.”
Satire is not dead, even if Alan Bennett can no longer do it. His words summoned up for me an England where the struggle for preference now starts before you even go to school, long before you get to fee-paying, Oxbridge and discovering impenetrable dinner party circuits.
I sat there enjoying the easy company, in the cosy, safe interior of the Taverna. My hair was falling out rapidly and I kept having to flick it off my fingers onto the floor.
After “church,” my Japanese friend and I rooted round in the Cancer Research charity shop finding a rather attractive summer handbag going for £4, and a Lonely Planet guide to Egypt.
I turned over a label on a shirt saying, “Together we can beat cancer.” I felt cheered by this, surely a good omen, back to the magical thinking that lies like icing on a poisoned cake.
There was also a leaflet on ovarian cancer – the usual symptoms listed; bloating, indigestion, pain going to the loo.
I'd never had any of them, but I have recently started having them. I began to worry. Perhaps “it” had come back, now lurking in my bowels? There is a scan coming up in two weeks time. I pictured myself getting the bad news, again. I had that dragging feeling of being hopelessly unlucky.
We made our way to M & S, which normally soothes all ills, to look for that elusive thing, a bra made of cotton rather than elastic and nylon and some summer things for my future fantasy holiday in Sharm el Sheik. I bought sandals and a red top thingy to wear over a wet swim suit on the beach.
We got cool in the food hall, but I began to get twitchy, hunting up and down the rows for things I couldn’t see. Kayoko handed me a raspberry lolly on a stick which I didn’t have a hand free to hold. I didn’t want it but she insisted.
We had an argument about frozen pasty as she said she “never” uses it, as if it was a vice, and that they didn’t have any. There was no one to ask and perhaps following codes of Japanese politeness she didn’t want me to find anyone. I eventually found it and felt cross, with her and the shop. At the check-out some lolly dripped onto the conveyor belt and she began to flap at it with her handkerchief, blaming me. I blamed her. The Polish check-out girl looked distant. I could have throttled someone and she probably wouldn’t have noticed.
On the way to a café we passed two Muslim boys preaching in the street. One was standing up tall yelling that we would all face “hell fire,” if we didn’t start reading the Koran. The other gave out leaflets.
“Oh bollocks!” I shouted at him. Then I saw how young an innocent they were and my heart melted. I amended my words to, “I think you are mistaken, sweetheart.”
I smiled and he smiled back, as if we were all having some kind of laugh.
Over lunch I felt restless and anxious, longing to get home. Kayoko seemed to eat terribly slowly in small lady-like mouthfuls, even cutting up her rice.
She insisted on accompanying me home, carrying my heavy bags. I wished she would go away as fear had returned, like a reptile lashing its tail inside me and I needed to hide away alone.
As I unpacked the M & S bag, and looked at the holiday things it seemed unlikely that I would ever get to wear them. They looked like things left behind after a fatal accident.
All evening and much of the night I had the dark thoughts about failure, visited by the complacent faces of the lucky ones with uncles in high places, and images of my friends who all seemed to be heading off on holiday with their dear spouses. I was there in a pit of my own making, that particular cycle of hell reserved for people who come down from the Midlands without the where-withal to please powerful capricious men.
In the morning, in the shower handfuls of hair floated through my fingers into the plughole, lying there like a very scruffy tarantula. I wept hard hoping the tenant upstairs couldn’t hear.
It was an outburst of anxiety, some of it was for my hair, sentimental tears, like saying goodbye to a close relation whom you will see again in a few months time.
I heard the bell and went to the door in a thin nightdress with my remaining hair plastered to my head.
It was a lad from some provider or other wanting to read the meters. He breezed in. “Are you well?” He asked disappearing into the dark damp place under my stairs.
“Do I look well?” I replied. “I am having chemotherapy and my hair is falling out.”
“My mate had that,” he said perkily. “Bowel cancer. He was twenty three. That was two years ago. He’s right as rain now.”
This brought my tears back.
“You’ll be OK!” he said as he left. “Don’t worry, you’ll be OK!”
If unexpected guests are angels in disguise perhaps he was one. Anyway, I decided to believe him as he knows at least as much as anyone else.
Although the cause is new, the routes back into depression are old; roots might be a better word for them.
These twisted old membranes are made out of failure, non-achievement and worse, things beyond my control which seem to have wrecked my efforts.
I picked up a magazine this week, 19/7/10, and saw a columnist whom I used to know when she was a mere secretary. She described how she had never worked hard at school, got lousy A levels and didn’t bother about university.
“People think I went to Oxford because I’ve got a posh voice,” she brayed like a parvenu pal of Bertie Wooster. Worse, she went on: “to get on in journalism all you need is nepotism, charm, and a bit of talent and determination.”
How would someone in another profession, say a doctor or a lawyer feel reading those words, although they are probably true to a certain extent of other professions too. I remember those rich girls coming in to national journalism somewhere in the mid 90s. When I first got there, in the 1980s, there was a window open for people like me – from comprehensives, with no rich uncles and too desperate to have much charm.
That Thatcherite window has closed now, and to read this girl wallowing and gloating in nepotism made me feel quite low.
Set off for the Ealing Greek Taverna, where beleaguered Father Bill now has a coffee morning which the diocese want to call an “alternative church.”
He was looking a bit ragged, the usual C of E vicar’s outfit; unkempt hair, battered old sandals, torn cotton trousers and charity shop jacket.
The London diocese is the second worst paid the country. Vicars live on less than £22,000 which means there are few happy, well adjusted family men doing the job. The idea of this poverty is to employ more vicars at a lower rate, “to increase evangelism.”
I told him about my agony over the new growth of English snobbery, a cancer that never seems to be cured.
He wasn’t interested as he is planning his November Guy Fawkes night.
“I have already had one parent offer to be burned on the bonfire,” he said.
“He said he would do it in exchange for getting his child into a good C of E primary school.”
Satire is not dead, even if Alan Bennett can no longer do it. His words summoned up for me an England where the struggle for preference now starts before you even go to school, long before you get to fee-paying, Oxbridge and discovering impenetrable dinner party circuits.
I sat there enjoying the easy company, in the cosy, safe interior of the Taverna. My hair was falling out rapidly and I kept having to flick it off my fingers onto the floor.
After “church,” my Japanese friend and I rooted round in the Cancer Research charity shop finding a rather attractive summer handbag going for £4, and a Lonely Planet guide to Egypt.
I turned over a label on a shirt saying, “Together we can beat cancer.” I felt cheered by this, surely a good omen, back to the magical thinking that lies like icing on a poisoned cake.
There was also a leaflet on ovarian cancer – the usual symptoms listed; bloating, indigestion, pain going to the loo.
I'd never had any of them, but I have recently started having them. I began to worry. Perhaps “it” had come back, now lurking in my bowels? There is a scan coming up in two weeks time. I pictured myself getting the bad news, again. I had that dragging feeling of being hopelessly unlucky.
We made our way to M & S, which normally soothes all ills, to look for that elusive thing, a bra made of cotton rather than elastic and nylon and some summer things for my future fantasy holiday in Sharm el Sheik. I bought sandals and a red top thingy to wear over a wet swim suit on the beach.
We got cool in the food hall, but I began to get twitchy, hunting up and down the rows for things I couldn’t see. Kayoko handed me a raspberry lolly on a stick which I didn’t have a hand free to hold. I didn’t want it but she insisted.
We had an argument about frozen pasty as she said she “never” uses it, as if it was a vice, and that they didn’t have any. There was no one to ask and perhaps following codes of Japanese politeness she didn’t want me to find anyone. I eventually found it and felt cross, with her and the shop. At the check-out some lolly dripped onto the conveyor belt and she began to flap at it with her handkerchief, blaming me. I blamed her. The Polish check-out girl looked distant. I could have throttled someone and she probably wouldn’t have noticed.
On the way to a café we passed two Muslim boys preaching in the street. One was standing up tall yelling that we would all face “hell fire,” if we didn’t start reading the Koran. The other gave out leaflets.
“Oh bollocks!” I shouted at him. Then I saw how young an innocent they were and my heart melted. I amended my words to, “I think you are mistaken, sweetheart.”
I smiled and he smiled back, as if we were all having some kind of laugh.
Over lunch I felt restless and anxious, longing to get home. Kayoko seemed to eat terribly slowly in small lady-like mouthfuls, even cutting up her rice.
She insisted on accompanying me home, carrying my heavy bags. I wished she would go away as fear had returned, like a reptile lashing its tail inside me and I needed to hide away alone.
As I unpacked the M & S bag, and looked at the holiday things it seemed unlikely that I would ever get to wear them. They looked like things left behind after a fatal accident.
All evening and much of the night I had the dark thoughts about failure, visited by the complacent faces of the lucky ones with uncles in high places, and images of my friends who all seemed to be heading off on holiday with their dear spouses. I was there in a pit of my own making, that particular cycle of hell reserved for people who come down from the Midlands without the where-withal to please powerful capricious men.
In the morning, in the shower handfuls of hair floated through my fingers into the plughole, lying there like a very scruffy tarantula. I wept hard hoping the tenant upstairs couldn’t hear.
It was an outburst of anxiety, some of it was for my hair, sentimental tears, like saying goodbye to a close relation whom you will see again in a few months time.
I heard the bell and went to the door in a thin nightdress with my remaining hair plastered to my head.
It was a lad from some provider or other wanting to read the meters. He breezed in. “Are you well?” He asked disappearing into the dark damp place under my stairs.
“Do I look well?” I replied. “I am having chemotherapy and my hair is falling out.”
“My mate had that,” he said perkily. “Bowel cancer. He was twenty three. That was two years ago. He’s right as rain now.”
This brought my tears back.
“You’ll be OK!” he said as he left. “Don’t worry, you’ll be OK!”
If unexpected guests are angels in disguise perhaps he was one. Anyway, I decided to believe him as he knows at least as much as anyone else.
Thursday, 22 July 2010
Tuesday, 20 July 2010
Telegraph Article 19/7/10
'Abandoned by the NHS, I was all alone'
Cancer patient Jane Kelly recalls her struggle to cope after a hospital sent her home too soon.
Jane Kelly
Published: 7:00AM BST 19 Jul 2010
Jane Kelly Photo: ANDREW CROWLEY Last May I was gutted like a fish. I arrived at Queen Charlotte's Hospital in west London, on May 4, for a radical hysterectomy, including a tumour on the ovary, but three days later I was back home.
For two days after my operation, nurses had one message – no one goes home until they have moved their bowels. But, the next day, a doctor appeared, moving swiftly from bed to bed without examining or questioning anyone, and declared us all fit to go home.
We were issued with a rucksack-size pack of pills, hastily instructed how to inject ourselves and shown the door.
With a large wound and a head full of morphine, I went home to an empty flat. I woke at midnight with a nagging pain, but was too weak to do anything about it. I felt lonely and vulnerable. How would I manage all those pills, the cleaning, the shopping – feeding the cat? For the first time in years, I felt truly helpless.
In the morning I injected myself in the thigh, as instructed, and tried to work out five pills. They had to be taken with food, but hours apart, leaving a long, miserable gap in the afternoons.
Friends called after turning up at the hospital to find no one there. One eventually found a nurse who told her, "She felt much better, so she discharged herself."
I felt outraged hearing this, but she pointed out that the girl spoke poor English and probably had no idea what she was saying.
There is no national standard for when people are discharged from hospital. It is all down to the doctor in charge. Gordon Brown's target of 18 weeks between GP referral and treatment put pressure on hospitals to treat more patients, faster. At the same time, bed numbers were cut, dropping by 30,000 in the past 10 years. With no free beds, the only way to meet targets was to send people home.
Recently, many hospital wards have been slyly shutting up shop at weekends. According to the NHS Confederation, which represents managers, closing wards reduces overheads by cutting back on staff. Cash-strapped NHS trusts also reduce community nursing services.
But this miserable cheeseparing hasn't worked, as 500,000 people annually are readmitted as emergency cases within 30 days of hospital treatment. A report last month showed that in 2009, hospitals received an extra £1.49 million for treating 820,395 patients who were readmitted within one month of surgery.
Two days after I got home, my wound opened. I noticed blood on my nightdress and called my GP. After holding on for 10 minutes, in tears, I discovered that home visits had gone the way of leeches.
Fortunately, I can hobble to the doctor in 10 minutes, so I wiped away my tears and set off. The waiting room was crammed. I was offered a chair in another room as there was nowhere to sit. When I saw the doctor, she looked flustered. I had disrupted her packed schedule.
She wrote a prescription, but I realised that I didn't have any cash left. I had to walk home to get my credit card, then shamble off to the chemist in the other direction. The first course of antibiotics cost £20. I suddenly realised the high cost of drugs, and I was facing a long illness. I wondered how older people cope with this abandonment and anxiety?
Figures show that the number of patients aged over 75 rushed back into hospital has risen steadily, with 159,134 in 2007-2008, compared to 147,257 readmitted in 2006, and 94,283 in 1998-1999.
I tried to apply my own dressings. Hopelessly tangled and sticky, I ran through them quickly and had to keep returning to the GP's. Where, I wondered, is Florence Nightingale when you need her, the convalescent homes we used to have, and, above all, the district nurses?
At the same time, I was trying to get a date for a final diagnosis of my cancer. Queen Charlotte's could not find my details on their computer. "They seem to have forgotten you," said a girl on the line as if it was a joke. Previously, they had not received letters from my doctor as their fax had broken.
I decided to get in touch with my cancer "keyworker". A keyworker is available to every woman who has been diagnosed with gynaecological cancer, but I hadn't expected to need her so soon. To my surprise, she told me that I was entitled to a district nurse and all cancer drugs for free.
Two days later, Emerald bustled in carrying an enormous bag. She didn't wear a uniform but had the bearing of a nurse. "They've only allotted me 45 minutes with you," she said.
I wondered why it would take that long to put a dressing on a hole the size of a 50 pence, then she brought out piles of forms. "No one has told me anything about your case," she added, "I didn't know what dressings to bring."
It was chilly lying there like a baby on a changing mat while she waded through endless questions and rummaged in her bag. One dressing took over an hour, but it was such a relief to feel just a little bit looked after.
I wondered why my own doctor didn't tell me I could see a nurse, or that cancer drugs were free? Too busy perhaps, but I have been told by doctors since then that, "In the NHS, no one connects up with anyone else."
Michelle Mitchell, charity director for Age UK, says: "There is a lack of joined-up care."
The Government published a white paper last week, stating that if a patient returns to hospital within 30 days for the same illness, hospitals will not be paid for their second treatment. This plan, called "re-ablement and post-discharge support," aims to keep patients in hospital until they are fit to leave, although that will still be at the discretion of a doctor. The new plan includes more community nurses.
But Katherine Murphy, of the Patients Association, spots a loophole. "You can't prove that the condition they are readmitted for is related to their original complaint," she says. "After being left to cope alone, people often return to hospital with new infections and breathing problems."
Nevertheless, Professor Steve Field, chairman of the Royal College of General Practitioners, is optimistic. "There is still a lot of work to be done about who will provide community nurses," he says. "But these new plans will allow us to create locally sensitive services, with the patient at the centre. This is aimed at keeping people out of hospital."
It sounds like a new start, but before anyone will be able to hear the needs of patients, GPs, nurses and hospitals will have to start listening to each other. Apart from huge reorganisation, the NHS will need better secretarial staff, faxes that work and an efficient computer system – rather unlikely in these penny-pinching times.
I was diagnosed with stage 4 ovarian cancer, and I will be having chemotherapy until September. Throughout my journey into the NHS, I have met with an alarming mixture of confusion and indifference, kindness and skill. The system is so patchy and disjointed that you never know what to expect.
I would advise anyone about to enter hospital not to wait for government plans to kick in, just fill your freezer and line up all the help you can from friends and relations. And when you are talking to anyone in the NHS, never take no for an answer.
J
Cancer patient Jane Kelly recalls her struggle to cope after a hospital sent her home too soon.
Jane Kelly
Published: 7:00AM BST 19 Jul 2010
Jane Kelly Photo: ANDREW CROWLEY Last May I was gutted like a fish. I arrived at Queen Charlotte's Hospital in west London, on May 4, for a radical hysterectomy, including a tumour on the ovary, but three days later I was back home.
For two days after my operation, nurses had one message – no one goes home until they have moved their bowels. But, the next day, a doctor appeared, moving swiftly from bed to bed without examining or questioning anyone, and declared us all fit to go home.
We were issued with a rucksack-size pack of pills, hastily instructed how to inject ourselves and shown the door.
With a large wound and a head full of morphine, I went home to an empty flat. I woke at midnight with a nagging pain, but was too weak to do anything about it. I felt lonely and vulnerable. How would I manage all those pills, the cleaning, the shopping – feeding the cat? For the first time in years, I felt truly helpless.
In the morning I injected myself in the thigh, as instructed, and tried to work out five pills. They had to be taken with food, but hours apart, leaving a long, miserable gap in the afternoons.
Friends called after turning up at the hospital to find no one there. One eventually found a nurse who told her, "She felt much better, so she discharged herself."
I felt outraged hearing this, but she pointed out that the girl spoke poor English and probably had no idea what she was saying.
There is no national standard for when people are discharged from hospital. It is all down to the doctor in charge. Gordon Brown's target of 18 weeks between GP referral and treatment put pressure on hospitals to treat more patients, faster. At the same time, bed numbers were cut, dropping by 30,000 in the past 10 years. With no free beds, the only way to meet targets was to send people home.
Recently, many hospital wards have been slyly shutting up shop at weekends. According to the NHS Confederation, which represents managers, closing wards reduces overheads by cutting back on staff. Cash-strapped NHS trusts also reduce community nursing services.
But this miserable cheeseparing hasn't worked, as 500,000 people annually are readmitted as emergency cases within 30 days of hospital treatment. A report last month showed that in 2009, hospitals received an extra £1.49 million for treating 820,395 patients who were readmitted within one month of surgery.
Two days after I got home, my wound opened. I noticed blood on my nightdress and called my GP. After holding on for 10 minutes, in tears, I discovered that home visits had gone the way of leeches.
Fortunately, I can hobble to the doctor in 10 minutes, so I wiped away my tears and set off. The waiting room was crammed. I was offered a chair in another room as there was nowhere to sit. When I saw the doctor, she looked flustered. I had disrupted her packed schedule.
She wrote a prescription, but I realised that I didn't have any cash left. I had to walk home to get my credit card, then shamble off to the chemist in the other direction. The first course of antibiotics cost £20. I suddenly realised the high cost of drugs, and I was facing a long illness. I wondered how older people cope with this abandonment and anxiety?
Figures show that the number of patients aged over 75 rushed back into hospital has risen steadily, with 159,134 in 2007-2008, compared to 147,257 readmitted in 2006, and 94,283 in 1998-1999.
I tried to apply my own dressings. Hopelessly tangled and sticky, I ran through them quickly and had to keep returning to the GP's. Where, I wondered, is Florence Nightingale when you need her, the convalescent homes we used to have, and, above all, the district nurses?
At the same time, I was trying to get a date for a final diagnosis of my cancer. Queen Charlotte's could not find my details on their computer. "They seem to have forgotten you," said a girl on the line as if it was a joke. Previously, they had not received letters from my doctor as their fax had broken.
I decided to get in touch with my cancer "keyworker". A keyworker is available to every woman who has been diagnosed with gynaecological cancer, but I hadn't expected to need her so soon. To my surprise, she told me that I was entitled to a district nurse and all cancer drugs for free.
Two days later, Emerald bustled in carrying an enormous bag. She didn't wear a uniform but had the bearing of a nurse. "They've only allotted me 45 minutes with you," she said.
I wondered why it would take that long to put a dressing on a hole the size of a 50 pence, then she brought out piles of forms. "No one has told me anything about your case," she added, "I didn't know what dressings to bring."
It was chilly lying there like a baby on a changing mat while she waded through endless questions and rummaged in her bag. One dressing took over an hour, but it was such a relief to feel just a little bit looked after.
I wondered why my own doctor didn't tell me I could see a nurse, or that cancer drugs were free? Too busy perhaps, but I have been told by doctors since then that, "In the NHS, no one connects up with anyone else."
Michelle Mitchell, charity director for Age UK, says: "There is a lack of joined-up care."
The Government published a white paper last week, stating that if a patient returns to hospital within 30 days for the same illness, hospitals will not be paid for their second treatment. This plan, called "re-ablement and post-discharge support," aims to keep patients in hospital until they are fit to leave, although that will still be at the discretion of a doctor. The new plan includes more community nurses.
But Katherine Murphy, of the Patients Association, spots a loophole. "You can't prove that the condition they are readmitted for is related to their original complaint," she says. "After being left to cope alone, people often return to hospital with new infections and breathing problems."
Nevertheless, Professor Steve Field, chairman of the Royal College of General Practitioners, is optimistic. "There is still a lot of work to be done about who will provide community nurses," he says. "But these new plans will allow us to create locally sensitive services, with the patient at the centre. This is aimed at keeping people out of hospital."
It sounds like a new start, but before anyone will be able to hear the needs of patients, GPs, nurses and hospitals will have to start listening to each other. Apart from huge reorganisation, the NHS will need better secretarial staff, faxes that work and an efficient computer system – rather unlikely in these penny-pinching times.
I was diagnosed with stage 4 ovarian cancer, and I will be having chemotherapy until September. Throughout my journey into the NHS, I have met with an alarming mixture of confusion and indifference, kindness and skill. The system is so patchy and disjointed that you never know what to expect.
I would advise anyone about to enter hospital not to wait for government plans to kick in, just fill your freezer and line up all the help you can from friends and relations. And when you are talking to anyone in the NHS, never take no for an answer.
J
Monday, 19 July 2010
A good day but don't bother with the play
Receive a magazine from “Ovarian Cancer Action.” They wonder if I would like to become “an ovarian cancer voice.” Wonder what that sounds like – very quiet and unheard or screaming in terror! Something in between perhaps.
I am now part of the “cancer community,” which never fails to surprise me. I could once have pictured myself as part of the bassoon playing community, or the polo playing community before that.
Stopped off at the vast second- hand book store opposite the British Film Institute. Didn’t intend to buy as they are too pricey and mainly sell to foreign students, but I saw a book called, “The Secret Garden of Eileen Soper.”
She was the woman who illustrated “The Famous Five,” for Enid Blyton and became a well known naturalist even working on Animal Magic on TV in the 1960s.
Beautiful illustrations, especially of badgers and foxes.
I couldn’t help being amused by the first chapter which described how in 1989 when she was eighty four, she was admitted to hospital in Welwyn after bursting a blood vessel in her leg.
She was unhappy there as she “hated the routines –and the food.” She asked to be discharged but they refused to let her go for a month.
She would have been much happier in hospital these days – no nursing routines are allowed as this is deemed to be “ritualised nursing,” and demeaning to the dignity of nurses. She probably wouldn’t have been fed, and they would have booted her out after three days.
Also bought a copy of “William The Good,” a collection of William Stories, published in 1941, with great illustrations showing middle class people in the 1920s. I really need light hearted, witty books to entertain me at the moment.
Feeling too hot I took the head-gear off to go to the loo. When I caught sight of myself in the mirror over the sinks I was shocked. My remaining hair in thin straggles across the top of my head, I looked ghastly. I made my way back through the foyer past the long bar wishing I'd kept covered up. I’m already getting the burqa habit.
We were there to see The Habit of Art, by Alan Bennett. Earlier this year this was the hottest ticket in town. Even a filmed version also sold out before I could get there. In summer it’s easier to get in and I bought good ones, to thank June for her lavish kindness to me over the last few months. However, as sometimes happens when you try to please, it led to disappointment.
The acting was good, although Desmond Barrit playing WH Auden, taking over from Richard Griffiths, waded through the first half apparently impersonating Frankie Howerd. I loved old Frankie but this was a distraction.
It was one red-herring among many and I never worked out what was going on – where was what we on tabloid papers used to call, “the angle?” What made Bennett angry or interested enough to make him write it?
He seemed to want to make the point that many famous artists are unpleasant curs.
This modern compulsion to show only the dirt on people meant that almost the whole first half of the play was about fellatio.
I often detest west- end audiences, but I really felt sorry for this one. There were coach parties of white haired ladies in Swiss Dirndle skirts and flat sandals. Some resembled Thora Hird and were perhaps hoping to see her or some other wholesome, hearty northern actress. They must have been increasingly uneasy sitting through a long play containing no dramatic tension whilst listening to men joking about “sucking each other off.”
It’s really not what you want to hear with your egg and cress sandwiches.
I have seen this play advertised in my mother’s magazine for members of the Towns Women’s Guild!
The play’s title was also a theme of sorts but wasn’t developed, it was a phrase that the author liked and toyed with a bit, but didn’t really get round to dramatising.
A lot of us have “the habit of art”, we get up and paint or write as a natural course of things, give up jobs and people who get in the way of doing this, and want a life chiefly centred on art. Bennett didn’t show why this makes life difficult or doomed to sordid sex and an unusually early death. The characters in the play with the habit had all done very well on it, showered with honours including an Order of Merit, and lovely houses.
Auden once said that artistic people fail if they don’t know what they want, or “gib at the price.” What this price was for him wasn’t described in this play.
Perhaps people who have the habit but fail to do anything successful would have been more interesting, people like Eileen Soper.
I was disturbed to read that Eileen was definitely not a member of the “cancer community,” in fact she was an enemy of it.
She and her sister who lived together and never parted, inherited from their father a morbid obsession with cancer. They referred to this only as, “the dread disease.”
Although they increasingly lived in squalor, with a house full of wild birds and field mice, they became so afraid of cancer, believing it was passed by germs in the air, that they became utterly reclusive, avoiding human contact and opening letters with tongs. When a letter came from a relation with cancer they got a neighbour who was expendable to open it, then boiled the mat where it fell. They even rejected their beloved pet terrier when he got a tumour.
Despite all this horror, Soper was a brilliant, instinctive artist, who never stopped working, a nine carat genius and an absolute nutter, gradually subsumed by her art. She never “gibbed” because she never knew there was a price.
Perhaps I’d better try writing a radio play about Soper as it seems to me that her peculiar life takes us nearer to understanding “the habit of art,” than the high achieving, self-regarding bum boys presented in The Habit of Art.
“You can get away with a lot if you’re famous,” said June. She could have meant the characters on stage, but I think she meant Alan Bennett.
Telegraph Article 19/7/10
http://www.telegraph.co.uk/health/women_shealth/7895273/Abandoned-by-the-NHS-I-was-all-alone.html
article in The Daily Telegraph
I think this link will take you to my piece in the D Telegraph about being sent home from hospital too early.
The piece is having a good response -
I received my first Christmas party invite today, from Matalan!
article in The Daily Telegraph
I think this link will take you to my piece in the D Telegraph about being sent home from hospital too early.
The piece is having a good response -
I received my first Christmas party invite today, from Matalan!
Sunday, 18 July 2010
Things good & bad
Good & Bad
My hair is still slowly sliding off my head. I now have a bald patch on top which looks as if someone has dropped a glass of milk on me and it is running down my head.
I must be experiencing the feelings of a reluctantly balding man, who tries a come-over every morning, and then pushes his remaining hair up from the back, and it never looks convincing.
In the clinic I met a young man with prostate cancer who was being treated with hormones and having hot flushes.
The Gods are laughing at us – well let them get on with it.
The good news is that I met young Maria again at Maggie’s, and although her cancer had returned and she and the doctors thought it had gone to her bones, it hasn’t – it has stopped spreading. This is wonderful news. I wonder if that candle I lit for her in St. Michael’s Bedford Park helped at all? Of course I passionately hope that it did. My Christian faith has increased since all this started, but so has my rationality. They seem to go along in uneasy tandem.
At the weekend I bought some insect repellent in Tesco’s. This is for my putative foreign holiday in early November, when all this nightmare is over and done with.
Last week I unexpectedly sold a newspaper article and three paintings. That pays for the holiday – but I will have to put the money into my bank account and I don’t expect it to still be there in four months time. In London it is very hard to save money, in fact I have never heard of anyone doing it, not even the Queen!
My hair is still slowly sliding off my head. I now have a bald patch on top which looks as if someone has dropped a glass of milk on me and it is running down my head.
I must be experiencing the feelings of a reluctantly balding man, who tries a come-over every morning, and then pushes his remaining hair up from the back, and it never looks convincing.
In the clinic I met a young man with prostate cancer who was being treated with hormones and having hot flushes.
The Gods are laughing at us – well let them get on with it.
The good news is that I met young Maria again at Maggie’s, and although her cancer had returned and she and the doctors thought it had gone to her bones, it hasn’t – it has stopped spreading. This is wonderful news. I wonder if that candle I lit for her in St. Michael’s Bedford Park helped at all? Of course I passionately hope that it did. My Christian faith has increased since all this started, but so has my rationality. They seem to go along in uneasy tandem.
At the weekend I bought some insect repellent in Tesco’s. This is for my putative foreign holiday in early November, when all this nightmare is over and done with.
Last week I unexpectedly sold a newspaper article and three paintings. That pays for the holiday – but I will have to put the money into my bank account and I don’t expect it to still be there in four months time. In London it is very hard to save money, in fact I have never heard of anyone doing it, not even the Queen!
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