Chemo Three.

Chemo 3

28/7/10

Half way through the long binge of chemicals. Arrive at Garry stuffed with steroids, raring to get on with it. Have still got some hair which I will wash, snip and condition it to the last wisp, but I have to wear a head-scarf now, as when I take it off I look like a ravaged old bat.

The coat pegs in my hall are loaded with hats, hat-bands and scarves donated by my mother and friends. A medical supplier recently sent a very pretty range, including useful turbans to make me look like Joan Collins. We haven’t seen her real hair for years and she must be the ultimate triumph of survival over nature. I was inspired by some recent quotes from her:

'I must give good hair and if I don't, I will give good hat. For trips abroad, or for accessorising with a gold sling-back, nothing beats a turban, darling.'

“As for ‘old’ age, I’m with Groucho Marx who said, ‘Growing old is something you do if you’re lucky.’

Not sure I can be bothered with the bright red lip gloss and the arched brow but I am with her on that one.

I was accompanied by Pam, one of my oldest London friends. We met because of the Live Aid concert in July 1985. Neither of us went to it sadly. It was blasting out from her huge old TV in the ramshackle student flat above my damp bed-sit in Herne Hill. I went up to bang on the door and complain and somehow we have been friends ever since, perhaps due to her down to earth Geordie humour.

I moved up to the other end of the clinic, away from the fish-tank to try to get a bit more space and air. I could see seven patients, all women, three from Asia, one from Poland, a girl from Rumania, and I sit next to Meena from Somalia, swathed in purple robes which cast a soft glow onto her high black cheek bone.

She told me her father had sent her to a Christian school in Somalia as he wanted her to get a real education, and it was a place where they asked her, “what career are you going to follow when you grow up?” Her mother later managed to remove her and she had an arranged marriage.

Fifteen years ago she came to Southall in west London with her husband whom she quickly divorced. She got a job with Maison Blanc, the French patisserie, working in their computer department, defiantly dressed in British style. When she was made redundant five years ago she found herself back with the Somali community and things had to change.

“I have to put on long clothes and veil up or people stare at me,” she said. “They are a very religious community in Southall, all long beards, and they are getting much bigger, I hardly go to the market now as it’s getting so crowded.”

Her independent attitude probably saved her or at least has given her more time. She said she had cancerous cells removed from her cervix eleven years ago, but got no follow up. She complained to her doctor several times “that there was something wrong,” but this was ignored.

Eventually she admitted herself to an A & E department and claimed to be bleeding, which she wasn’t. “I shouted and they thought I was losing it,” she said. This direct action led to her getting a scan. Cervical cancer was discovered and now she is having radiotherapy every day and a short course of chemo.

Our regular nurse, Eileen, from Malaysia bustled about in her neat blue uniform, ordering drugs from the pharmacy while a Nigerian nurse began to put the colourful cannula into the back of our hands, Meena’s like a bunch of long brown twigs, mine short and white.

Hers lay on the sheet listlessly. “I wish my hand was like yours,” she said. “I hate my long fingers.”

It sounded absurd as her hand was so elegant, but she seemed unhappy and discontented with herself and Southall.

“The Somalis there say I am far too assimilated, too Westernised,” she said. “They just can’t understand me living alone and keep saying, “you must get married.” ”

Despite that concern, she says they have given her no help at home and no lifts to the hospital, MacMillan Cancer Support have given her £300 for taxi fares and she always has to come for treatment alone.

We began the long wait for the chemicals to pass into our bodies. Pam and I amused ourselves briefly with a copy of Metro, which has some good animal stories. A Chinese restaurant had been closed down after a mouse was seen swimming in a large bowl of sweet and sour source. There as a photo of it climbing out looking rather bedraggled and sick. Another showed the birth of a baby panda in captivity. The tiny naked creature lay there looking like a tiny man, while its mother stared at it apparently mystified.

“The problem with pandas is that they only have sex once a year, on a specific day,” I said.

“Well they are doing better than us,” said Pam. This began a short, scurrilous chat about sexual activity more usually heard in bars. A few ears pricked up, an Indian woman lying on a bed with her husband in attendance gave me filthy looks. He looked at us curiously, as if to say, how come you are sitting up having a laugh? They obviously have no cultural hinterland composed of Arthur Askey and Our Gracie.

A lone old lady called Mrs Norton appeared, striding about, not looking like a patient with her coat on and carrying an umbrella. She seemed very curt with the nurses. The place was becoming crowded. There was no space to put out our leg rests on the chairs and when I moved my intravenous stand and a slightly bag nearer to Mrs Norton she got up and went off swiftly. I just knew she was going to find a nurse and complain about me. She returned apparently unsuccessfully but said, “Is she a patient?” referring to Pam.

I said no, she wasn’t. “Then she shouldn’t be having cups of tea,” she rasped back.

She went off again, to sort out Pamela who was waiting to use the kettle. Getting no support in her quest to stop Pam having tea, she sat some distance away, eye-balling me. Oh no, I thought, why do I attract people like that?

Pam moved her hard chair to block her view and she immediately scuttled off again. In fact she went outside and was later brought back in by two male nurses.

Just an old bat teetering on the border of dementia, angry like the rest of us to be in the Garry Weston Ward. Now and then hairless, shadowy women would pass through, leaning forward on sticks or walking frame, coccyx bones knifing out under thin trousers, reminding us that we were all involved in the same journey, no matter how involuntarily.

Nearly half way through

27/7/10

Monday night – read a press pack sent to me by Ovarian Cancer Action. I have offered to write a piece for them and be one of their “voices.” They also send me a DVD for making a power-point presentation.

Unfortunately it was full of lethal statistics telling me that my chances of surviving this cancer about 38 per cent at best. Everyone is lumped into that statistic. Go to bed trembling and sleep badly.

I assume this information is for women who don’t yet have the cancer, but might get it and need to check for symptoms – but it’s not good for people like me where it has already struck. I would probably run screaming out of my own power-point.

My Tuesday trip to Garry for pre-chemo blood test. Clinic same as ever, very smiley hospitable receptionist directing the lost legions towards a desperately crowded corridor.

“Bit of a wait,” she whispers, beaming.

On my way in I see Nurse Eileen chatting to an elderly man. I really like her, she is so efficient but kind and seems genuinely interested in her patients – or are they called clients these days?

We have a chat and she tells me she spends some of her holidays working at Lourdes.

I have been there twice, to write scandalous stories about the place for the Daily Mail. I don’t tell her that.

It has crossed my mind that I might make a genuine pilgrimage myself when all this is over – there are some spectacular ones about, as well as the more demure sites in the UK, such as Holywell in north Wales.

In the clinic I have to join the people standing, including some very ancient looking men, brought up in the long gone age when gentlemen stood up for ladies to sit down.

In my role of nuisance I ask a nurse if we could perhaps have a few more chairs. She says yes, but none appear. Just beyond us is the vast waiting room, full of high backed chairs, at least half empty.

The Malaysian/Spanish phlebotomist has gone, replaced by no less than two English lads, not something you often see. Things move faster.

One lady tells me she is glad the sniggering man has gone as he once brushed his hand against her nipple. One of those things women sometimes experience but can’t report, because they just can’t be sure enough that it wasn’t innocent.

Some of my former colleagues from the nearby prison arrive to see me, but are not sent through so the meeting doesn’t happen. Probably just as well as there would have been nowhere for them to stand. Never mind – at least I get to see a doctor unexpectedly early, pulled out of the queue to see her.

She is a spry Scots lass, very amiable and I feel reassured talking to her. I read in the Ovarian Cancer action about something in the blood tests called CA125, which reads your level of cancer. The normal rate is between 1 and 35. Because I ask, she goes off to find it and tells me mine is now 15. Before my op it was 76. Feel elated! Everything smoothes out suddenly, long to get on the mobile and tell my mother the good news.

The doctor writes down some things I need for my next cycle of treatment; mouth-wash to treat ulcers and a laxative. Bowels are very important, I suppose they always were but until recently I never gave them a moment of thought except briefly when packing to go anywhere outside Europe. But in this new world I have entered they are there bloating and always threatening to turn into pipes of cement.

The drugs given in the first few days after chemo, against sickness and allergic reaction turn your shit to grit which then softens into something like old rabbit pellets.

I also now face a mid-way scan. I hope this won’t clash with my visit to see my mother in Staffordshire. The doctor says they might be able to fit the scan around this. Catch sight of a Gloucester Old Spot taking off from the car park outside the window.

Back in the corridor a woman tells me that she took some of the laxative and didn’t have enough time to get to the loo. She had to change her bed. After hearing that I probably won’t have the nerve to take it, certainly not the whole packet and definitely not at night. I will probably take it about 6am, after designating a whole day free for me to hover by the loo.

A young man in the clinic tells me that some sensitive soul among the doctors has told him his cancer is “a tiger not a kitten.” Remember Proff Gabra’s remark to me, "a Rotweiller not a poodle." Well is a ferocious dog better than a tiger? Do they consciously control their metaphors according to the level of danger? After all, tigers will certainly kill you, while any kind of dog can be subdued and put on a lead.

When I first went to work at the Mail on Sunday they gave me an awful story to do. I had to go off to the north York moors and be tracked through the woods by several Rotweillers. I had to let them catch me, for a photo, and had to wrestle with them wearing an arm pad. I survived it all, albeit with a stiff arm and a suspicion that the editor did not have my best interests at heart.

Also spoke to a lady whose breast cancer has returned, after a brilliant CA125 reading. Hearing this was as bad as reading Ovarian Cancer Action, or statistics on line. The flashing dorsal fin glides into view again, distant but gaining over the surface of this deep hungry ocean where I float so helplessly.

I have this scenario where my cancer comes rushing back and after a bit of thrashing about, that is the end. And another next to it where I hear people say, “Oh, she had cancer five years ago, but she is still with us and going strong.” Jubilation, chinking of glasses.

Which ever it is, everything has changed and I can never swim back to where I was.

Getting the Diagnosis May 2010

Self Portrait

Self portrait with a scar. http://www.stuckism.com

From the Stuckist artists web site.

Stuckism is a world wide movement founded by people who like traditional art forms such as painting and drawing.

Experiment with headscarves

Fairy Rings

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?

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.

Salisbury Review Theatre link

http://www.salisburyreview.co.uk/Theatre.html

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

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.

Apart from the small issue of cancer, my new life often sometimes seems strangely happy. Because of my illness I no longer beat myself up for not going to an office every day and my life has acquired a perfect shape, not much money, but I have got time and space for painting and writing, with no boss to scare the wits out of me or undermine my slender confidence.

Saturday 17^th of July, made my way to the Southbank to meet my friend June. Strolling along in the sun with an ice-cream, what could be better?

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.

At the theatre June greeted me with a new sun hat. I was already wearing one of the scarves she’d given me. "Well you always wanted to be an egg head," she says cheerfully.

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!

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!

Unemployment and non-support Allowance.

Friday 16^th July 2010

I am glad that the NHS has a new white-paper which is going to sort out all its ills, introduce, “seamless services,” “bottom up care,” “joined up thinking,” put patients at the centre, etc. Perhaps someone someday will also get round to sorting out the employment and welfare system, oh they are, that is good news!

Got a letter this morning from social security saying that they have received a sick note from me but this will only last for three months, well that is no surprise as it was only written out for three months. They also instruct me: “If you were still sick after 04/10/10 you will have to send another note.”

I’m afraid those tenses leave me even more tense and foxed. It seems they have projected me into the future from a future further on than that.

I have also received a second letter, from “jobcentreplus,” and a mighty thick form about my putative Employment and Support Allowance. I haven’t asked for this and the form doesn’t seem to apply to me, it’s for people who can’t walk or dress themselves and have serious fights in the street.

Some time ago they decided that I was entitled to £9.93 a week, during the chemotherapy, while I cannot do much work. I was glad. That will buy a few bunches of nutritious asparagus, but this new letter says they have looked at the claim again, and I will not be getting it.

They give a detailed breakdown of my claim ending with, “You would have been entitled to ------- £0.00”

On another sheet it says, “because you are entitled to contribution based allowance we will pay you - £9.93”

No idea what I am getting – is it £0 or is it £9.93? It says both in the same letter.

I don’t get out much so it will be exciting waiting to find out!

16/8/10

Receive a letter from “jobcentreplus,” asking why I haven’t filled in the mighty form they sent me, warning that if I don’t complete it I will no longer be eligible for “National Insurance credits.”

I had no idea I was getting them!

Write them an abject letter apologising for whatever it is I have done, or not done, as the case may be.

12/ 9/10

A phone message from my doctor inviting me in as he has to fill in a form for my Employment and Support Allowance, that is apparently still going on somewhere. This is followed almost immediately by another letter from the jobcentre people telling me that I am not getting any money. I have never once asked them for any money – and completely forgotten how I got into this!

Try to explain all this to the doctor. "Just take whatever they offer," he says, as if I am asking for money, which I am not. He is a busy man, doesn't have time for the subtle beauty and serpentine wonder of these things.

21/9/10

Letter from jobcentreplus saying they have paid £59.58 and £0.00 into my account!

Wonder what that is for, was it to do with the doctor and what period of time it covers. Perhaps it is a one off? They don’t say. I won’t enquire – best left well alone.

23/9/10

Letter dated the 20^th arrives with this news: “From 7 May 2010 your Employment and Support Allowance will be £9.93 a week.

We cannot pay you as you because you have as much or more money coming in that the law says you need to live on.”

Clear as mud as my mother used to say.

29/9/10

Another missive from jobcentreplus says that they have changed their minds and will now be paying me £41.33 a week, but I am not getting any “more” Employment and Support Allowance. As far as I know I have never received any.

They also say I will get a “Christmas Bonus” of £10!

They will credit my NI contributions “while claiming Employment and Support Allowance.”

They add a form to fill in if I wish to “appeal against this decision.” Hardly likely as I do not understand any of it. If some smidgin of money ends up in the account that will be very nice, I don’t want to investigate further.

Pehaps I will be had-up in the future for claiming money unlawfully. I know that ignorance is no defence, but I will plead utter confusion and I’ve got the paper work to prove it.

Alice in Chemo-land

Chemo is boring, exhausting and a thief of time, but it's also an altered reality. It floats you up to a Venusian landscape were You drift about looking for familiar things, but everything is changed.
It took me four days to pick up after the first chemo, seven after the second. Perhaps this as due to the heat wave but in those few days I felt mad as a snake; exasperated by everything, especially my mother who was unlucky enough to be visiting.
“Chemo hasn’t improved your temper,” she observed. This set off another round of bickering until I fell into a heat dazed swoon.
I go “back to normal,” as if I have eaten a piece of magic cake or drunk some elixir, just a few sips and everything changes back, the whole picture shifts. I go from gloom and gothic darkness where I want to kill everyone and everything, even the cat, to sudden sunlight and tranquillity.
On Wednesday afternoon I lay down to listen to a radio play; one of those worthy, leaden things which seem to have been written by someone from social services as a public service announcement. Dozed off, and when I awoke “it” had happened. I was back to normal. I will now be waiting for this magic moment of transformation throughout the rest of the treatment.

There are a few strange lingering symptoms; coffee, chocolate and alcohol taste too strong, and I feel hungry in the middle of the night. I often lie away thinking about food, longing for breakfast so many hours away, or plotting the meals I will make the following day.
I recently had a go at something called Parmigiana, fried vegetables layered with tomato sauce and mozzarella, baked in the oven. It has the consistency of pasta and oozed with cheese. The memory of it haunts me. I used to fall asleep thinking about men. I remember George Clooney and Jack Nicholson staying interestingly in my mind for awhile after I interviewed them for the Mail, but now I fall asleep thinking about creamed peas and panacetta.
Like many people I am eating to forget about my body, and what might be going on in there.
The only other strange thing is that my feet feel numb, with a low level throbbing. I walk on these strange pads not feeling anything as if my feet have merged into my shoes. If I brush one foot with another, it’s like touching someone else’s foot. I quite like this sensation.
I have no complaints so far because my "good days," seem so special.

Tricky Conversations. Chemo Two.

It’s almost a relief to be back to Garry for my second Chemo – the next one will be number three and that will be half way through. Some say it all gets worse as you go along but I am not listening to anything negative. I have also started plotting my all clear holiday for October.
Get seated into the line of patients’ chairs, accompanied by my friend Kayoko. She manages to get one of the few spare visitor’s chairs which are hard. Happily she is up and about, chatting to people, holding up her hand “healing” people, and snapping away with her camera.
Although there is a line of windows behind us they are all shut.I have decided not to go on with the cool cap, as I am already bald as Max Wall, so I don’t have that cooling aid. It soon gets very hot so I ask a nurse if she can open a window. She says she will but of course, true to nursing non multi-tasking, she doesn’t.
I always seem to be the one piping up while most other people are quiet and passive. I don’t want to make trouble or attract hostile attention. I dread getting on the wrong side of anyone, or being seen as a trouble maker, which is often fairly easy to do.
After an hour waiting for the pharmacy to delivers my drugs a nurse begins to put them into the back of my hand; saline, the two cancer drugs, then Piriton to prevent allergies, which makes me suddenly drowsy.
Some people have been looped up to their drips for several hours already and more seem to be crowding in, drawn from all over the planet; Rumania, Kenya, Sri Lanka, India, the Caribbean.
I chat to a large Cockney woman across from the vast, stygian fish tank. I admire her cropped but highlighted hair and she says it is all down to a good hairdresser. We chat about our symptoms. She says she has had cancer three times and looks a bit pessimistic. I tell her mine was called a “stage 4” at first, but now might be “technically a stage 3.”
“Well that’s terminal that is,” she says, and I see the anger in her large square face with its Desperate Dan chin. Try to quickly shake her words out of my head and retreat to rummaging through my bag of picnic food.
Her sister, also big and burly, turns up and snatches Kayoko’s chair, without a word. When Kayoko returns the sister mutters at her unpleasantly. Somehow we have upset them.
On my other side sat Ann, a small, slender woman in milk-bottle glasses who turned out to be a university lecturer who has written a masters degree paper on “William Cobbett and rural radicalism.”
He was the man who called London, "The great wen," or tumour. You certainly meet a wide range of people under the NHS.

In his great book, “Rural Rides,” Cobbett mentions her great, great, great, great Grandfather, referring to him as, “that old rascal John.”
When Cobbett was in Newgate Gaol for two years for “treasonous libel,” after he protested against some sailors being flogged, Mears tried to extend his farm lease but Cobbett said he would, “rather give my eyes than let that old rascal stay a minute longer,” and he was out by Michaelmass.

Further down the line sat Vera, a beautiful young woman from the Caribbean. She had a full head of dreadlocks and wore an expensive looking diaphanous red gown sweeping the floor. I heard her say to a nurse that she and her husband were going on a cruise, “when all this is over, but we can’t book anything yet.”

I told her I was planning a holiday perhaps in mid October as I would have a scan at the beginning of that month and assumed that all would be well by then. I am having adjuvant chemo, to follow up after cancer has been removed, but as I said this I realised that as she has a tumour on her spine and they are using the drugs to try to shrink it her situation is quite different.

I felt I had said the wrong thing. I was slightly better off than her and it wasn’t right to allude to it, although it was accidental. We agreed that waiting for any scan results is hell.

When her intravenous bags were empty I saw her putting on her lipstick. “Meeting my husband,” she said, probably the only woman in there still feeling the pressure to be attractive for a man. I wondered what that must feel like. Endless varieties of courage are needed in this situation.

Beyond us curled up on their beds were the Indian ladies, groaning, surrounded by their scared looking men. Another way of dealing with this situation I suppose.

Kayoko returned and started talking about her flat, how she had been burgled several times losing almost all her possessions. The police think it is the same person each time, but don’t have the man-power to do anything about it. I said she should put a metal plate in the door.
“I won’t do that,” she said. “If they want to come in and steal they can do it. I accept my fate,” and she made a gesture of twirling her wrist up to Heaven.
This severely irritated me.
“Why did you have a hysterectomy then a few years ago?” I snapped, “And if you get cancer I take it you won’t try to save yourself?”
She looked upset and we gave up talking. Only four more hours of silent dripping to go. Ann went home, replaced by a smiling Asian woman from Wembley who didn’t speak a word of English.

Lots to do before number two.

Lots to do before number two; start the day at Garry waiting in the crowded bit of corridor while the phlebotomist plies his trade, very, very slowly. He did tell me the long wait was the fault of the computer, but I wonder.

He is very young, and looks Malaysian or perhaps from Singapore but apparently describes himself as Spanish. He has hardly any English and his manner bothers me as he sniggers to himself and calls me, “luv.”

“Hello luv,” “Give me your arm, luv,” “Date of birth, luv.”

It sounds absurd and inappropriate. I ask him why he uses that word and he just sniggers and mutters, then carries on with it. Don’t say anything reproving, perhaps because he has to stick a syringe into my arm.

Can’t help wondering why we don’t have a young English phlebotomist and why do we hardly see any English male doctors anymore? A friend who works at the Neurological hospital organising junior doctors’ hours, says that almost all the young medics she sees are English Muslim men. Apparently they, along with some English women, are the ones getting the right grades for medical school. Perhaps English boys just no longer work hard enough.

Got to Ealing in time for the monthly vicarage tea party. From somewhere in the parish Father Bill had acquired half a Victoria Sandwich with white icing and cherries on top. I looked at it greedily – real comfort food. Just what the doctor ordered.

Moving the table outside Father Bill seemed a bit worried by the garden which is overgrown and looks like a hay field.

Someone asked him how anyone could manage to tackle it.

“It will soon have its summer cut,” he said sounding testy and bored. “It gets one twice a year.”

He seemed as edgy as a moulting cat and soon disappeared off to his office to stare at his computer.

His church, St Martin’s, is setting up a “Men’s Group.” This would once have been considered retrogressive but is now rather trendy. I thought I’d give him some amusing gossip about St Michael’s Men’s Group, who usually meet in the Tabard Inn.

They were assigned to provide the food at our summer lunch recently in the vicarage garden. Unfortunately they ran out early leaving a long, disgruntled queue, and had to dash across to Marks & Spencers, happily now open on a Sunday.

Bill wasn’t interested in this bit of gossip and went on staring into his screen.

“The Diocese wants me to find new ways of having church,” he said gloomily.

“This tea party is now church,” he said. “Our Wednesday coffee mornings in the Greek Taverna are apparently a type of church. We are having having a summer fair on Sunday. We’ve never had it on Sunday before as that used to be a special day, but not any more. We’ve got to move with the times.”

Apparently the highlight of the fair will be a chance to throw a wet sponge at the vicar. That seemed appropriate somehow for the way things in the C of E are going.

The French windows in the front room soon filled with elderly ladies. They seemed very interested to see me, showering me with praise for turning up, as if I should be lying in a darkened room somewhere.

“You are so brave,” “So positive!” One of them adds, “My husband was like that. I think that’s why he lasted as long as he did.” He’s obviously not around now.

At the table outside was a smiling middle aged woman with a skimpy top displaying a chest scorched to the consistency of roast chicken, and her husband, a good looking working class man.

He was worrying about their daughter who is a singer with some concerts lined up. For a moment I imagined an opera singer or someone like Charlotte Church. But he said she is going off to Spain to “impersonate Lady Gaga.”

He was even more anxious and upset when a stout German at the table said there was a World Cup match on TV at that very moment, which he was obviously missing.

Klaus sat with his disabled English wife. She had an ugly crooked front tooth stained green and spoke slowly but very loudly.

“Where do you come from?” she asked me. I said I usually go to St Michael’s in Bedford Park. “Well what are you doing here?” she boomed. I said I came along because of my friendship with Kayoko who belongs to the parish but didn’t feel sure that my reason was good enough for her.

She began ordering him to get her tea and biscuits, no please or thank you but he bustled off obediently.

Later he began telling me about a wonderful trip he’d had at the last eclipse of the moon, when he had travelled by train from Moscow, through Mongolia to China and then on to Japan. He said he’d found a way to travel very cheaply in Japan.

“I don’t want to hear about all this,” she suddenly bawled at him. “I want to listen to these other people!”

He glanced at me sheepishly and fell silent.

Couples fascinate me, probably as I’ve never been part of one for more than a few weeks. There always seems to be one person who wins the fight, crushes the other. Not so simple of course, the squashed person probably likes that position, or takes petty revenge and complex but defeatist avoiding tactics.

I realise now that I never had the wherewithal for any of that, hating both sides of the battle. I’ve only realised this clearly since the diagnosis of cancer which shocked me so much and made me really see myself. Standing aside from the “mating game” for the first time in my life, I saw how ill equipped and unwilling I had always been to really play it. This could be the chemo talking – I realise that since I have started the treatment my thoughts have darkened. Not all the time, but in strange bleak patches which descend unexpectedly.

As the day cooled I managed to get on with some painting. I have just sold two paintings to my private collector in Luxembourg and feel encouraged. I have four on the go, self portraits trying to capture the fear I first felt when all this started. Don’t think I have succeeded except in one.

There is also a nude self-portrait showing my hysterectomy scar. I’ll have to turn that to the wall when mother arrives in a few days time. She strongly disapproves of nudity in any circumstances. Even I suspect when she’s alone.

I have been invited to show in an exhibition in September and will hopefully exhibit some of these. The critic Jane Shilling wrote a review in the Daily Mail of my book, Inside, about my experiences teaching in prison, calling it “solipsistic.” She should see these!

Tides

Tides.

It’s four days since the second chemo. People sometimes wonder what it’s like and I can’t exactly say. The woman I met when I first went to Garry screwed up her face and said she couldn’t describe it and now I know what she meant.
It’s such an odd feeling of discomfort, like being squeezed, stretched, prodded, pinched, stuck into corsets. Joints ache and bones niggle, even in the usually quiet places like coccyx, ankles, shins, toe nails and scar tissue.
There is nausea, wind, constipation, looseness, hunger, but they can all be fleeting, like waves in the wake of a tide of chemicals passing through.
There is fretfulness, restlessness, rage, and a deep seated nastiness about everything, even things once liked. Listened to Summer Lightening by PG Woodhouse on Radio 4, a whole hour of it, but couldn’t follow any of it, and everyone in it seemed vaguely hateful and threatening.
The faces of people I don’t like and all the news I don’t want and financial worries crowd in. I need to note them down like tumour markers in a CT scan, for instant future dismissal from my mind.
Sunday evening sit in the garden in the sunshine, waiting to be served asparagus and salmon with watercress sauce. Cry, then stop crying, then start again. What can I do with myself? The question asked by everyone bathing and bashing about in chemo.

Excursions in the sun.

My neighbour, a refugee from Liberia, put her large round head over the fence yesterday. She is very handsome with a skin so black it sometimes has tinges of Prussian blue, but this time she looked oddly sallow and pasty. She said she’d recently had an operation and stayed in the Victor Bonney ward, in Queen Charlotte’s Hospital, where I was exactly two months ago.
She has seen many terrible things in her life, including the murder of her parents and grandparents, but the rough treatment she got on old Victor shocked her.
“The nurses were terrible to me,” she said. “So rude, and when I called for them no one came and if they came they were angry.”
I haven’t done much for her either. We live next to each other but I didn’t know she was in hospital and she didn’t know that I had been in there. An acute failure of neighbourliness – typical of London life I’m afraid.
My only constant companion at home is British Gas. For some reason they love me so steadfastly that they must call me almost every day. The last time they rang they said it was, “just a courtesy call,” admitting that they had no reason to contact me except for their fervent desire to be polite to me.
I also get lots of calls from BT asking why I am no longer with them. I can’t answer them honestly as I just don’t remember why I left them, and I have no idea who I employed to replace them. When I tell them this they sound as if they just don’t believe me.
They are more angry with me than British Gas, more hurt and upset, like a rejected lover. I usually feel so bad for them that I ask them to put things in the post for me so I can consider returning to them, but of course they never send anything and I never think about it once the phone is put down.
I normally avoid the heat in London by hiding in doors, but this summer I really have to get out there. I know that I need to see old friends and start going back to all my old places of interest. The only alternative is to stay here indoors talking to Scotsmen on the phone who want to sell me things I don’t need, getting bored, lonely and fat.
The heat in central London, particularly on the tube is not a bad as I remember, as long as you go armed with water, wet wipes, fruit, a book or paper which you can use as a fan if you have to stand, and a lot of patience. I never had that before, perhaps I am cultivating it now.
I am so thrilled to get out that I feel as if I am on holiday in London, something I haven’t experienced since I arrived in 1983.
On Thursday 1st July, met my friend June at Richoux in Piccadilly, where we tucked into Eggs Benedict with bacon, then set off for the Royal Academy Summer Show.
As usual it was a mixture of boring sameness from the established RA’s who take up acres of space, and terrible rubbish from the “contemporary artists” particularly Tracey Emin, who is now being used as a milch cow for the gallery.
Not all of it is dross of course, there are a few gems nestling in there, mainly from the public, particularly in the print room, but I felt disgusted, and doubly so as I didn’t get my paintings in!
I saw a group of teenage boys sitting on the floor staring into space. One of them, aged about fourteen was bald as an egg. I went over and spoke to him, asking if he had been ill, perhaps having chemo? I realised as soon as I spoke hat it was a mistake. He was reluctant to answer me. “Alopecia,” he said quietly. Instead of having a useful conversation I had just embarrassed him in front of his friends. Make mental note not to speak on impulse to any school-child again.
Not as bad as the time in Tate Modern where I offered an unwanted bag of crisps to some teenagers and they looked scared to death. Obviously fear of strangers bearing gifts is as dinned into them as anti-racism and health and safety.

June loved the exhibition and we sat in the Friend’s Room drinking over-priced tea feeling that all was right with the world, apart from the Tracey Emin scribbles all round the walls. It was impossible to get away from her in there.
We intended to go on to the BP Portrait Award but I felt surprisingly tired after just walking round one exhibition.
The following day I braved the heat again to see a film. On the tube to Leicester Square a man shaped like Wibbly Pig sat opposite wearing a base-ball cap and red vest bearing the slogan: “Some people are fat. Get over it.”
That’s honest I thought. “Fattist rights,” another useful instruction from America. As I stood up to get off, I saw that the words said, “Some people are gay. Get over it.”
What a disappointment, and I would never have known if he hadn’t mentioned it.
Arrived at the cinema feeling as if I was going to burst with heat. In the cafe the sofas were all occupied but one very round elderly lady beckoned me over to sit next to her. I sat with a cup of tea wondering if she wanted to talk. She was eating a very large raspberry meringue, two in fact, stuck together with thick cream.
“I am on Weight-Watchers,” she told me getting out a note-book and carefully writing down her calories.
“Not too bad as meringues are very light,” she said. “But I have put on some weight lately as my partner and I have been to Eastbourne, and you know what that’s like.”
My friend Maggie, my oldest friend in London, whom I met in the Morley College canteen in 1983, arrived and we saw a new American film called, Please Give, starring Rebecca Hall, the daughter of old Peter.
It was an excellent film about the problem of charity. The story centres around a middle class couple in NY who buy up the apartments from people who are dead and dying. They sell these off at a higher price. The wife gets worried about the ethics of what she is doing, but not enough to stop. To salvage her conscience she constantly gives to people on the street. She is frustrated that her giving can’t change anything and increasingly at odds with her fifteen year old daughter who wants more giving from her, and her bored husband who strays into a massage parlour.
This film would have been proud to carry the slogan, “some people are fat, get over it.” The daughter is fat, miserable and spotty faced. Not something you often see in American films. Everyone in this one, apart from the mother and one other girl are very odd or ordinary looking. Even Rebecca Hall looks toothy rather than toothsome. It also features people with Downs Syndrome and an extraordinary array of very old actors, not normally seen on screen. One is a vicious old granny who should play the part of Woody Allen’s mother if he ever makes a autobio-pic.
What do these ugly actors normally do for work one wonders? There can’t be much of it about in these glamour obsessed times. But this is the antidote to Hollywood. The modern emphasis on samey good looks is viewed with terrible pessimism. It is also a film about mutability, human frailty and death.
I wouldn’t have gone to see it if I had realised that one of it’s themes is the shortness of life and it touches on the subject of cancer. In fact it begins with some startling photography in a clinic testing women for breast cancer. We see a wide range of banal looking breasts getting the dreaded test.
Horrid granny dies peacefully in her chair, but a very nice grandmother with a devoted grandson gets breast cancer, and we are made to look at the terrible unfairness of fate, which not even Americans with all their hubris can stop.
I saw it as a Christian, but non Puritan film, about battling to be charitable in the midst of advanced capitalism and taking a risk about being exploited. It is about the need to give and the impossibility for most of us of really doing so. It is also about family relationships, people finding each other through patience and holding on to small amounts of faith in each other. As Auden put it, we must love one another or die, we must love one another and die.
The ending was a bit sentimental, when the mother finally understands her daughter and buys her a pair of jeans, costing over $200. But US films always have to have a cop out ending. Perhaps this was an ironic reference to that tradition.
Rushed from the cinema to Earl’s Court to meet my Iranian friend. She took me to a new Japanese restaurant in Kensington. The last time I was there it was Italian.
We talked about world politics and religion, discussed the apparently insoluble problem of Israel. She thinks that the image of The Holocaust protects the Israelis from taking responsibility for their terrible actions. Interesting to think how Hitler is still managing to wreak havoc in the world.
I mentioned to her that at least ten percent of Muslim parents in east London are withdrawing their children from music lessons even though it is on the National Curriculum. The white liberal headmistress interviewed about it on TV said that she didn’t argue with the parents because of “goodwill.” She was only worried because she doesn’t have anywhere to put the children when they are withdrawn from the class.
My friend was annoyed. “So many Muslims are fighting against that sort of thing,” she said, “but we are constantly let down by English people like that head teacher.”
Another friend who teaches Muslim girls in east London says that the parents he knows are not like that at all. I wonder who those ten percent are? Perhaps one small cultural group. We will never know as for the sake of “goodwill” such things are not looked at too closely.

On Saturday morning , 3rd of July, set off again for central London, to see the BP Portrait Award, meeting my friend Melissa who is a sculptor and Ella, a leading Stuckist painter who had been cycling round Germany, with her young daughter on the back of the bike. She had been to Berchtesgaden, built for Hitler’s 50th birthday, which was apparently full of American tourists and brought me back a silk headscarf decorated with Edelweisse.

I put it on for awhile, but it quickly got too hot. As we left Melissa said, “What are you going to do about your hair?” I still have no idea.

At 2pm met my second oldest London friend, the actor Brian Eastty at the Donmar Warehouse, to see The Late Middle Classes, by the late Simon Gray.
Excellent acting particularly by Helen McCrory and Robert Glenister. He is the perhaps more talented brother of the more sexy Philip (DCI Gene Hunt).
“The two of them have decided to divide all the best acting parts between them,” said Brian bitterly.
This wasn’t one of them, a rather dull play. It had its moments, amusing dialogue but didn’t amount to much more than a few clichés about moving from youth to middle age, the loss of talent against the exigencies of life. Heard all that before, nothing new in this.
It was cramped in the circle. I could only see by screwing my head around some pieces of metal but it felt great to be there, living a normal life again, using critical faculties and battling with the remaining white haired middle classes for tickets, ice-cream and a cubicle in the meagre ladies loos.
Visited the food stalls in Covent Garden piazza afterwards. They weren’t there the last time I was up there, a new development. In Boswell’s tea house Brian said what was the difference between cancer returning after five years and someone being newly diagnosed with the condition, was one worse than the other? He didn’t think so. I agreed at the time and felt very up beat.
Got home tired but managed to make myself a fish curry using a packet of spices and ingredients I’d ordered on line. Some of it ended up on the floor and in the bin as I got exasperated with all the chopping, grating and scraping.
Only three days to go until my next chemo - no idea how that will be. If it stays like this it will be fine, so far so good, but it might accumulate and make life different. From now on I will have two sessions a month until the end of September.

Gone Tomorrow

Gone Tomorrow

1st July 2010. On Skype to my Polish friend Ewa, see a tiny image of myself in the top right hand screen and my hairline has obviously receded.
In the shower, dark, wet wads of hair slide out through my fingers, fall into the drain and lie there like dead mice.
Stepping out of the shower I felt breathless with shock and stood in front of the cheval mirror panting, as if I had just run a race, naked, like in a dream.
For some reason the remaining hair on top of my head goes into several large mats and I have to cut them off. Now my scalp really shines through like a little grey crescent moon ceaselessly rising.
The word "Alopecia" comes into my head sung to the tune of "Alouette." It rattles around my brain for hours and sounds quite soothing.
On Wednesday I couldn’t wear a scarf as it was so hot, so I bought a paper Trilby, but realise that I won’t be able to wear that in the theatre or cinema. What will I do, perhaps just sink down in the dark, or more likely just forget the whole thing and go bald. Not at all sure yet what I will do.
At the moment I can cover my bald pate by combing the hair up from the back, another version of the side-ways comb-over once made famous by Robert Robinson the quiz master.
I find hairs wound around my tubes of oil paint like stands of cotton, it falls into the paint getting mixed into the surface. Throughout the day I can feel it coming out in single strands, its stuck in the soap, gets into my face cream, hairs tickle my shoulders and arms, itch down my back, trail along the kitchen floor and I can even see them lying in the cat’s dish.