Tuesday, 21 December 2010



Woke up to the radio telling me about temperatures plummeting in Belfast. I also heard this last night, several times. I am due to drive north soon – and find myself in the grip of national hysteria.

There has been nothing like this frantic confusion and teeth gnashing since the death of Diana and news of the last serial killer – the new agent of terror and despair is the weather!

I couldn’t watch the news last night as I knew what it would be; people trapped in their cars over night or surviving in hastily built igloos with their dogs, lorries jack-knifed, a humanitarian catastrophe at Heathrow airport, forlorn people trying to get onto a Eurostar train, and reporters in thick jackets standing outside, telling us, “It’s terribly cold here!” Also more references to the plummeting temperatures in Belfast.

Oh Dear. Just like last year when I was worried sick before I set out.

I got home safely then as there was a whole area of the west Midlands that was completely untroubled by snow – and I do hope to get home again this week, in my new VW Fox, on its first big outing, without needing a shovel or space blanket.

Into the carpal tunnel


Sent off to a GP in Southall, west of Ealing, to start having my carpal tunnel problem sorted out. They give a steroid injection in one hand to begin with, see if that works, then a few weeks later do the other hand.

My hands got worse after the chemo, due to neuropathy which makes them numb and tingling, even more numb and tingling than they were. At the moment they are really bad, plaguing me night and day. While I was in France Conner gave me some splints to wear at night, which help a bit. Lord knows what people did in the old days, before steroids etc.

I had to go on an overland train to Southall. As I got there it went suddenly dark, then heavy snow began to fall. I was really early as I thought I’d have a look at the place and have lunch in a local café before seeing the doctor, but now I had to plod through the snow which was turning into a blizzard, blowing into my face.

I found my way by asking locals, most of them didn’t speak enough English to help me, or didn’t know it. I was so relieved when a young Sikh lad gave me directions. I had to walk down a road with Victorian terraces on either side, it might have been a typical London street except that at the end, bang up against the houses was a vast mosque topped by a golden dome. I was astonished at the size of it and how close it was to the houses – it was a flagrant declaration that everyone in the houses was Muslim, marking the deliberate and proud creation of a ghetto.

I found the surgery near by. It was quiet, no one in but one young man. We sat and listened to a TV broadcasting one of those NHS films - it described the help available if you find you have a weak bladder, the actress Pam Ferris appeared telling us coyly that at some time she, “had been a carer,” but not when or for whom, there was advice about what used to be called VD and an advert for Bryn Terfel’s new Christmas recording – which could also have served as a warning against cheese.

The young man got up and spoke to the receptionist, but as he had no passport, ID, NHS number or evidence of a permanent address he went empty away.

I decided to venture out and have a look around. In the next street another very large mosque with a minaret scratching at the snowy sky. Couldn’t find anywhere to eat, apparently the main high street is full of places, but this must have been a bit out of the way. I eventually landed in a fish and chip shop. I never expected to eat this dish again, after spending time with Conner and deciding to eat healthily, but it is amazing how appetising it is, when you see it on the plate before you. In this case on the paper. Although there were tables at the back of the shop in the gloom there were no plates and no drinks available. I asked for a fork and the man behind the counter didn’t know the word, another man who looked Turkish had to translate.

I was the only woman in there, I didn’t see many women around at all, and I was the only white English person. I had a feeling of gentle, friendly people living in a very small, enclosed world and rarely leaving it. They were in a suburb of London but it could have been anywhere, a construct of south east Asia transported as if by magic carpet and randomly set down in wealthy northern Europe.

At 3pm I returned to Dr Sandhu for my injection. He kept a mask on all the time but I think there was a big beard behind it. He was a most interesting and friendly man. He told me he had worked with Sir Harold Gillies, the father of British rheumatology after the war, and had been a specialist in bones and joints ever since. He obviously had a deep enthusiasm for his work, which is always reassuring.

“A beautiful hand,” he said, turning mine over in his, “no sign of rheumatoid arthritis.” Well that’s one good bit of news.

He put the syringe into my wrist, it stung a bit, it went in further then hit the nerve – I shouted out loud. But then I felt very grateful. There is a speck of light at the end of the carpal tunnel and over the next few days I hope to get the proper use of my hand back.

Tuesday, 14 December 2010

Gadding About


So many people to meet, everything slightly off the hoof, as if we are all dashing off somewhere else or have just been somewhere at short notice – the effervescent effect of the onrush of Christmas, still tantalisingly out of sight, weeks to go but you can just about smell it coming.

I stepped into the National Gallery and not having anything particular in mind to see drifted about a bit, then settled in front of a Leonardo, The Madonna of the Rocks. Quite a few tourists peering at it – it is strange the difference in their looking and mine, as the painting is here in London I feel a kind of familiarity and ownership about it.

When I went back onto Trafalgar Square, after about eight minutes, there were lots of students with placards gathered outside. They had arrived surprisingly fast.

Crossed the square to get to a Costa Coffee place to meet my new friend Ann, whom I met waiting for blood tests in Garry Weston. She is a lecturer, an expert on rural radicalism in the late 18th century, and as I mentioned earlier she is losing some of her sight and uses a white stick.

Sat waiting, watching the students get into a tighter bunch and the ominous sight of the police in their yellow waterproofs, blocking off one exit from the square. They looked as if they were spoiling for a fight, pre-empting it by their numbers and rigid formation.

People sitting nearer the window could see them cutting off the top of Whitehall.

“Oh dear no, not again!” said the waitress, a young Spanish girl. “The last time, all the tables and chairs outside got thrown into the air, it was a terrible fight.” She sounded like a nursery school teacher talking about a rather unruly class.

“The Police came in and closed us down and then no one could get out of the square,” she added.

I wished that Ann would hurry up so we could have our coffee and sandwich before we were all turfed out into a massive police “kettle.”

A foreign tourist started eye balling me as I was sitting there with two seats while he was standing holding a plate of food, but at last Ann arrived. At the sight of her white stick he backed off giving me a reproachful look.

It is a relief to talk to Ann as we have a shared a life-threatening situation. This gives a kind of closeness I have never experienced before. I told her I’d read there were three stages with cancer; disbelief, bargaining and acceptance. We agreed that we are both still at the bargaining stage, at least I am, bargaining with God, and we are both trying to improve our diets, which is a kind of attempted deal with nature.

After lunch we crossed Trafalgar Square, which looked strangely wet, as if the police had already been busy with water-cannon, to the Sir Thomas Lawrence exhibition at the National Portrait Gallery. It would have been a whacking £12 each but she paid a reduced fee and I got in free as a “carer,” thanks to the white stick. I am still pretty bald and I couldn’t help thinking that we must look like a couple of old crocks. We have also both got incisional hernias or is it herniae, from our operations.

She has two one on each side. We both feel disgusted by them and want them fixed. She has had a few conversations with doctors about it and hopes to get it sorted out sometime in the New Year. We have had to wait till the effects of the chemo had finished. I haven’t been to my doctor about it at all yet, as I don’t feel like going near a hospital unless I absolutely have to. We both agreed that if we could afford it, we would go private to get small things fixed. It would be nice to just walk into a clinic and get my carpal tunnel syndrome sorted for instance, not because the medical treatment would be better, but just to avoid the visit to planet NHS with all its hassle and confusion.

We forgot all this inside the exhibition, sharing a commentary with two leads fixed to one i-pod, rather shackled together. Ann had to peer at the works through a magnifying glass with a lamp attached. One of the attendants sprang forwards, worried about the light, but when she saw the trusty white stick she backed off.

It was really good going round with someone who knows a lot about Regency celebrities and is passionately interested in the paintings. She was fascinated by things I wouldn’t have noticed, such as the portrait of the chaps who started Barings Bank, in 1762.

They were hated by her hero, William Cobbett, the writer who called London, “The great wen.” He was against them because they made money from enclosing land which had once been open for common grazing. He was possibly also upset that they funded the Louisiana Purchase for Napoleon, even though Britain was at war with him at the time! Bankers, I ask you.

I was interested in the difference between the paintings – a portrait of Sophia, King George IV’s unmarried sister, looked like a real, living, breathing human being, so modern in its loose handling and humanity, while right next to it was a glossy image, already in a style that became popular with the Victorians, as unreal as an air-brushed photo of Sarah Fergusson in Hello! Magazine.

We were in there for hours and had to be revived with tea. When Ann got home she found a letter waiting, with the dreaded NHS logo on the envelope. It demanded crossly to know why she hadn’t turned up two days previously for her hernia operation, which had been arranged for her.

No such arrangements had ever been made – she could only think that they had mixed her up with some other lucky person.

Monday, 13 December 2010

Winter Wonderland


Mik’s rap describes the mood and the mindset – I am going in for constant checking. When I feel tired I seem to find more lumps and suspicious bumps that have gone by the following day. But at the moment I am healthy, as far as I know. Not sure how I do know. One of the symptoms of ovarian cancer is “bloating,” and I now eat so many sprouts and pans of curly kale that I am bloated a lot of the time. Just wind I say to myself reassuringly. I have an “incisional” hernia too, created by the surgeon’s knife, and that causes some strange aches and pains too.

My eyebrows are back, in fact they came back suddenly in Venice as if two insects had blown in across the Lagoon and stuck to my face. They are thicker than they used to be, perfect dark bows. My hair is also coming back, “gamine” people say, and more pepper and salt before.

This is by far the best time of year for me, cold, which in London is easier to manage than hot, you have an excuse to eat mince pies and cream, and there is nothing immediately ahead but parties, lunches, mulled wine and fairy lights.

There have only been two downers so far this month. A letter marked NHS, which fills me with more foreboding than a bank statement. It was long and detailed and referred to my complaint about the district nurses who didn’t call at the beginning of October. I was waiting, they didn’t turn up and I got no help from what the letter calls their “referral service,” i.e. their call centre, called Harmony – or rather I now see from the letter, “Harmoni,” which is even dafter.

The letter does show that they have made a thorough investigation into what happened. Only one person denies anything, but then apologises. This is certainly much better than the response I received to my complaint about my treatment on the Victor Bonney Ward at Queen Charlotte’s Hospital back in May. I am still smarting from that letter, which implied that I had made everything up because nothing had been written down in their book at the time. They also dismissed my comments because I had not brought them up with my cancer support nurse, although I had no idea I was supposed to do that. They spoke to her after my complaint apparently, but she has never mentioned any of it to me, which is a bit embarrassing.

My other recent problem was Tescos. Set off there with a pile of their hard earned coupons, only to find that the best one could only be used on line. Last time I tried that their whole system had gone into meltdown, they couldn’t even send me my new password. I also noticed it is for £7.50 and there is a £5.00 delivery fee. Even with my bad maths I could see there was not much point in that one.

Today I found that the shop near me doesn’t have many of the items listed on the coupons. I was told to go to a bigger store. Two of the other coupons wouldn’t go through, one because it was just out of date, the other because he hadn’t rung the item up properly. I then made the mistake of asking for a wine box, which he couldn’t open. While all that was going on I was aware of an angry looking young man with metal in his face, who looked like a bouncer but who seemed to be in charge, staring at me in annoyance as an irate queue forming behind me. It’s that unpleasant feeling when you know someone thinks you’re a trouble maker.

I did come back with a crate of mulled wine. Had trouble finding it though and for some reason they sent a young Muslim lad to help me locate it. He had no idea what it was and told me rather accusingly that he wouldn’t know where it was because he doesn’t drink. I expect he will be in charge of their wines and spirits the next time I go in.

Two small blips because I am living in a winter wonder land. Last week I was in south west France, visiting Conner Middelmann-Whitney, who runs an anti-cancer cookery course in Toulouse.

As I am slightly unbalanced at the moment, or I was at the time, I didn’t think how long I was going to impose on her when I made the arrangements, but I arrived on Wednesday and didn’t leave her home till the Saturday, and she took me to visit a spa, for the Daily Telegraph’s Spa Spy section on their Wellbeing Page.

She said it wasn’t a long trip, but it seemed quite far to me, through the snow up into the Pyrenees. She didn’t complain and was such a lovely hostess.

It was a fascinating trip for me – I got the chance to live in the French countryside for a few days, in a beautiful house decorated for Christmas, with a real family. She has three children, the oldest is 13, and they are all tri-lingual.

I read to them in the evening from Dr Seuss. I love that Green Eggs and Ham thing, with the lovely little rodent skipping about, and I was able to lie on a sofa, wrapped in a blanket watching the children sitting at a table quietly doing their homework by lamp light. It reminded me of a scene from an Ibsen play, where people sit at a table, getting on with something, before something else happens.

During one meal, the oldest boy, who was very good looking and intelligent, asked me, “What was Prussia?” I love it when children say things like that. It’s so fresh and makes you think carefully about what you actually know. I remember a little boy in a restaurant saying to his father out of the blue, “Daddy, where is Poland?”

There was also an ancient ginger cat called Paddy. I was a bit worried when I saw his bed in the garage as it was below freezing, but when I first met the children, I realised that Paddy was with them, completely wrapped in a shawl.

He wasn’t very well, and after I left they took him to the vet. He was found to have hepatitis and an old bullet lodged near his spine. Cat’s all have their own stories.

The first evening I was there we went out in the dark to a local farm house, to collect a large bag of organic chickens, actually they were hens, something we don’t eat in England now. It was rather unsettling to see their heads and bluish-pink wattles inside the bag. They have the same expression dead as when they’re alive.

One day we went into the local village where they have a market. Conner knows all the suppliers. The cheese seller had twelve kinds of Roquefort, and next to him a man was selling acorn fed ham from the Basque country. Not so delightful perhaps that they also farm donkeys in the area, for sausage meat.

One evening we collected two of the children from the home of some neighbours. She is Swiss he is German. Their house was large and open plan, overlooking a valley. It reminded me of a house I visited in the 1960s, when everyone was excited about seeing The Sound of Music.

They had a bushy Christmas tree going up to the ceiling and a large wooden crib on display for the children. A party was about to begin, a “Raclette evening,” not sure what that is, a cross between roulette and a wine and cheese party perhaps, but you wouldn’t have known it was a party at all, as the guests sat very quietly speaking in low voices. Apparently that is the Swiss way.

I was interested to hear that the Swiss lady had had cancer, while she was expecting their first child. Her chemo had been delayed until she gave birth – how ghastly is that? He works for the local aerospace industry where they make the Airbus. The French government are cutting back on the project and sacking many of their foreign workers, mainly British, German and Swiss and sending them home. They are not allowed to do this under EU law, but get away with it somehow. The couple might lose their grand house if his job goes. Almost every one I meet seems to be struggling in some way. I wonder if people always went through such traumas in middle age?

I loved Conner’s cookery class, with its interesting collection of ladies from all over the developed world. The spa, at Ax les Thermes, was rather strange, but fun. Not often you get the chance to run about in the snow in your swim suit, or jump out of the snow into a really warm thermal bath.

It was pleasing to see the local men in their tiny Speedos. Apparently they have to wear these by law, probably brought in at the request of Mme Sarkozi.They are not allowed to wear baggy boxer shorts in swimming pools, as they are deemed street clothes.

Ax became a well known spa at the time of the Crusades, and French doctors still send their patients there for three week stints, free of charge. I was surprised when a German friend of mine was packed off to the Saxon forest for a few weeks R & R after she broke her nose. Now where exactly is the NHS equivalent?

Since I’ve been back I’ve been buying some of the healthy foods that Conner recommended, including walnut oil and a delicious cherry concentrate which you add to juice. Despite that, I’ve somehow got a cold – and a large lunch party looming up!

Zest for Life The Mediterranean Anti-Cancer Diet

By Conner Middelmann-Whitney published by Matador £12.95

(25percent of all royalties go to Maggie’s Cancer Support Centres)

Nutrelan Cookery School: Four hour’s tuition for 45 €, including lunch with wine, recipes to take away and on-line support.

E – mail conner@nutrelan.com Phone (33 5) 06 76 96 99 00


Saturday, 11 December 2010

Mik Artistik

9th December 2010

In bed on Thursday night, I heard The Bespoken Word on Radio 4, recorded at the Cheltenham Literary Festival.

Being Radio 4 they had selected a bunch of rap poets. I wasn’t too keen on this and wondered whether to switch it off, but among the yowling, growling voices, I heard someone called Mik Artistik.

Apparently he makes a living by touring the north of England drawing portraits on brown paper bags. As I listened he performed a rappish poem called Cancer. Defiant and perceptive, it acutely told the tale of someone living with the disease.

The next morning I e- mailed him and he sent me a copy of the poem.

I spoke to him later on the phone and apparently he doesn’t have cancer, has never had it. It was purely a work of the imagination.

Hello Jane,

Thank you for your email. It gave me a jolt and made me thank God

I can run about painting and doing poetry and music.

I am happy that the cancer poem has given you a buzz and some cheer

and I hope you continue to paint and create Stuckist stuff.

It's a touchy subject for lots of people, I think.

I am in rude health and had some misgivings about doing it initially because

Ben and Johnny who are in my band, Mik Artistik's Ego Trip, both lost their parents

to cancer. However we had a few chats about it and boom it's out there now.

Here it is...

Woke up this mornin ..Cancer ,

had a cuppa tea .. .. Cancer,

went for a wee............. Cancer

Cancer's killin me.

Went to the pictures ...Cancer

had a cuppa coffee .. Cancer,

had a fuckin toffee.. Cancer

Cancer's all I see.

There's nothin that I want for Christmas,

There's nowhere that I want to be,

I sometimes feel like killin meself,

..but Cancer's killin me.

I've lost four stone... Cancer,

I can fit in me jeans ..Cancer

I look like a dream..Cancer

Cancer's killin me.

I wish it were flu but it's ..Cancer.

What can I do I've got.. Cancer.

I wish it were you that had Cancer,

instead of ..Cancer killin me

It's also on our album "BLASTER" with a Latin backing, available on cdbaby.com

Merry Christmas lass,


Tuesday, 30 November 2010

Winter arrives

Tuesday 30th November 2010

The first snow has arrived, not crisp and even as in the north, but wet and half hearted. When I got up and looked out my back garden was covered in fox prints right up to the back door – so deep the animal must have been in it up to its groins if they have them.

A more unfortunate sign of winter – the return of Nigella Lawson, the Alma Mahler of TV cookery shows, with one of her so called cookery programmes and also some of the male equivalents – these programmes are mainly about what to do with turkey leftovers, several obviously filmed in the summer and tossed into the winter schedule, very odd considering how far we’ve still go to go until the big day.

I am off to Toulouse tomorrow for the D Telegraph. Feed a robin in the garden, he's not going to get anything while I'm away which is a bit bothering.

I worry about some of the local cats too - I have noticed a beautiful grey tabby roaming near the former council flats and in Bedford Park. He has no collar and is un-neutered. I mentioned him to Doreen at church who knows everything that goes on in the area. She said, "Oh that's Mr Tom. He's just moved in with two nurses. They are very nice people."

Canny cat. I was glad to hear that! There is a whole quiet sub-culture of middle aged and elderly women keeping their eye on the local cats which is very reassuring.

Sunday, 28 November 2010

Travel Plans


Walking along the road to church, through Bedford Park, wondered if I could estimate how near or far I am from death by looking at the position of other people on the pavement. Quite a distance behind, I saw a figure walking slowly, but pushing a bike. A young man came out of one of the big houses with a fretful child in a pushchair and got between us. When I looked back a few moments later the figure with the bike had gone.

Beautiful Advent Sunday service. The vicar and forty members of the congregation have just returned from the Holy Land. I didn’t know that there is an Anglican cathedral, St George’s, in Jerusalem, which has a partly Arab speaking congregation.

I would love to see it and resolved that I must go on their next visit in 2012.

After the service I told one of the church wardens that I would like to visit Jerusalem and he said he would make sure that I get there. I told him how much one of the doctors had worried me.

“Tell him to fuck off out of your head,” he said.

My friend in Poland’s son is getting married in May next year, and I aim to be there too.

Friday, 26 November 2010

Away Days

Most of the time feel fragile with fear waiting for the cancer tsunami to roar back and engulf me.

The chance to visit Venice for a few days, to write a feature for Private Banking Magazine, was a welcome diversion, and a bit of a challenge as anxiety is so draining and makes one want to hide away.

What can one say about Venice? That was a challenge too. I decided to pitch the piece squarely towards bankers and their wives and mistresses i.e. not much about art or churches.

Last time I was there, in 2005, I didn’t like it much, it rained all the time and I was perplexed by the place. The streets really were full of water and I couldn’t understand why people didn’t fall in all the time. I’m surprised that I didn’t as I was in a kind of daze I get when I am disorientated. I remember reading that old Woodrow Wyatt fell into the Grand Canal. He was smoking a cigar and came straight back up to the surface with the cigar still clamped between his teeth. Don’t know if it was still lit.

I must have gone in September, because it was cold and wet but still blanketed by tourists. At least 7,000 a day in St Mark’s Square. The lines of US college students talking about calzone and the price of “Bud,” defeated me. I didn’t get to see St Mark’s Basilica or the Doge’s Palace or very much at all. It was not a successful travel piece.

When I first arrived, I wrote in my diary about my enchantment and my disappointment :

One moment I was in a graffiti smeared multi-storey car-park, the next I was in a boat on the Grand Canal in the dark, gliding out of the 21st century into the 16th. The only light came from lanterns over narrow doorways. In the dark I saw shadowy figures standing on a small Baroque bridges looking down at us and vanishing, then I was hauled onto a creaking jetty and led through an unlit marble entrance hall, ankle deep in canal water.

“When I saw the carved wooden angels guarding the entrance to my apartment in Palazzo Mocenigo, I became a “Venice Idiot,” this was it – the ultimate place of enchantment.

“This was once the home of the powerful Mocenigo family, where they entertained royalty and political allies in the 1570’s.

Once up a marble stairway and inside, I had a thousand square feet of mosaic marble under my feet, silk brocade walls, six delicately painted wardrobes and Murano glass chandeliers overhead. This was the Venice of my dreams. I spent my first night in a bedroom once used by Lord Byron.

“The morning after, as so often happens, wasn’t so good. Who was this next to me in the morning light? It was the Piazza San Marco, epicentre of European culture, described by Henry James as “the drawing room of Europe,” where Sand, Stendhal, Balzac, Wagner, Mann, Byron, Rilke, Hemmingway and sundry Italian film stars enjoyed bumping into each other in the Florian and Quadri.

“Even in the 1960’s the comedian Kenneth Williams was delighted to spot Dirk Bogarde there, and to get an autograph from Eve Arden.

Today you make your way to the Florian through a slew of litter. Inside a scowling waiter will try to sell you “toasts” while Japanese tourists in identical sun visors troop past the window. The square is more like a fast-food joint than a salon, even though the product being gobbled is culture not calzone.”

This time I did some research before I went, reading Jan Morris’ Venice, looking at the Blue Guide, visiting the Canaletto exhibition at the National Gallery and attending a lecture at the Courtauld about Ruskin in Venice.

This made me feel prepared to take on La Serenissima, and also made me feel like a normal person – the person I was when I first went there, before I was so unexpectedly sentenced to death.

I had an itinerary laid out for me by Bellini Travel, a small bespoke company, and it involved a lot of shoe leather. I was determined to do it all, and see the Basilica and the Doge’s Palace this time. In November the ghastly crowds subside slightly so I wouldn’t have to queue for so long. I bought vouchers on line before I went, without realising that all the major churches charge separately.

I worked hard and at least understood where I was going. Bravely I thought I’d have dinner in Harry’s Bar, near St Mark’s, as most of the readers would have heard of it; once frequented by Hemmingway, Gina Lollabridgida, etc.

You have to push through tired Americans propping up the bar, and until recently the most jaded among them was the barman, Claudio Ponzio. He’d been there for thirty five years, making 700 Bellini a week in the summer. This time I heard that he was recently shipped off to Abu Dhabi where they’ve opened a new Harry’s, and perhaps saved his sanity.

I ordered a frozen Martini, which Truman Capote named a “silver bullet.” I followed with a small plate of baby artichokes, a John Dory which was rubbery and a lemon meringue pie, just like mother used to make, very badly, with no trace of lemon and it wouldn’t have passed the Greg Wallace test on Masterchef. With a glass of wine the bill came to 170 E.

After the alcohol hit me I felt very relaxed and wrote in my note book: “Stop fighting death because you can’t win.”

Full of confidence I rolled back up the tiny streets to the Gritti Palace where I was staying.

The next morning all that confidence had melted away. I found I had also written on a post card showing Harry’s Bar as a dot on a map of the lagoon: “Don’t fight it, no point anyway. Just lay down your arms and enjoy what ever is left. It won’t be too bad.”

At breakfast I had one of the most wonderful views in the world; a weak sun resting on the shoulder of Santa Maria Del Salute, but I looked at the post card and it seemed to have been written by a stranger.

There had been heavy rain early on, the lobby of the Gritti was flooded and the concierge sighed as he helped with rolling up the rugs. I made my way to St Mark’s Basilica, trying to walk on the raised portable tables they put up. I found myself in the middle of the square with some other tourists, stranded, with the walkways all round the edge. We had to wade through water to climb up onto them.

The Basilica was shut because of flooding. Owing to a brief reading of Miss Garnet’s Angel by Salley Vickers, I knew there was a north door I could go through somewhere round the back. I found it, and the walkways led me right into the chapel reserved for private prayer. I looked at the small icon of the Virgin over the altar and wept, then felt embarrassed. Fortunately there was no one in there except plumbers and workmen and no one took any notice of me. I crept out feeling empty and uncertain, no spiritual reassurance received.

I got on a vaporetto to Murano to see the Seguso glass factory. I checked my lipstick in my handbag mirror, and in the sharp light of the lagoon noticed that my eyebrows had returned, and unfortunately some hair on my upper lip, which didn’t used to be there. I hadn’t brought any tweezers along as I haven’t used them for so long.

After Murano, rushing to get back to St Mark’s where a visit to the private palazzo Loredan had been arranged, I made a quick detour to the cemetery island and the graves of Diagalev, Stravinsky and Ezra Pound. It’s a graceful, tranquil spot and it was touching to see the little pink ballet shoes put on Diagalev’s tomb. Stravinsky had the usual roses and Pound a rather suburban shrub, not right for him at all, shards of Murano glass, broken bottles or smashed up flowers would be more appropriate.

On my last morning I had a few hours free before the 12 noon check out, when I had planned to see the Basilica properly, and the Doge’s residence. I didn’t realise how tired I was, or perhaps it was the fault of the dark shutters, but I went to bed at 10pm, felt very restless, woke up at 11. It seemed strange that only an hour had gone by as I felt I had been in bed for hours. I thought I would never get back to sleep and decided to dress quickly and go down to the lobby to use their computer, to kill the dreaded hours of night. When I got there I noticed it was day light outside – I felt a sense of panic as I asked the date. It was the 18th. I had slept from 10pm till 11 am the next day.

I was all of a do-dah then, rushing to get a late breakfast, stuffing in bread rolls and prunes under the two flying cupids in a golden stucco frame, painted by Tiepolo in 1740. I still haven’t seen the Basilica or the Doge’s esteemed home. Wonder if I ever will!

In Marco Polo airport felt an odd pricking sensation, realised later that it must be the pubes coming back.

Sunday, 14 November 2010

An Angel in the Living Room


How’s this for a bad start to a day; 9am decided to order some wine from Tesco on line, using my vouchers. Last month they went out of date before I got round to using them. Got to the “check-out” thinking, this is easy, then it wanted me to register or start a new account. As I once had an on line account with them years ago, it wouldn’t accept a new account and need my old password. I couldn’t remember which cat’s name I was using at the time, so I had to apply for another. An hour later it hadn’t come. Tried to get through to one of their numerous electronic numbers. Permanently engaged. Speak to a Scots lassie on another extension who says she’ll send me a new password, and also advises me not to try extension three for on line shopping as no one can use their vouchers on line and everyone is ringing up to complain. No new password arrives. It would have been simpler to have used a phone in the first place. Write a letter of complaint wondering, uneasily, if I am the only person left who still does this?

Unexpectedly the doctor I spoke to last week then rang to tell me I hadn't had a blood test and needed to come back for one. They are like vampires those doctors. I had one when I went in on the wrong day, the week before. She obviously didn't know that and I forgot to tell her.

Then I made the mistake of talking to her about our last chat, which had become so muddled in my head. She chose her words carefully but it was all dire and tipped me back into the terror which had been ebbing away.

“No one knows how you will respond to the chemo as it’s so early in your treatment,” she says. “Early?” Of course it’s the start, not the end.

Some people are still alive after being diagnosed in 2003, but she says, that is after “a couple more rounds of chemo.” Only a minority have long remissions.

Heard the eleventh hour being declared on the radio, national silence falling like a stone, while sitting at the computer I felt as if my own life had been snatched away by a silent, sneaking disease, as effectively as by sniper or shell fire.

I’d got a great day planned; pay over the money for the new car, two exhibitions at the RA, meet friends later and go to the Private View of the Discerning Eye exhibition, where my painting, Chemo I is on show.

Thanks to Tesco and the conversation with the doctor tears had run into my make-up. I decided to try out the wig, as I am going to Venice on Monday and think it might make me feel more confident with style conscious Italians.

As I set out I cautiously observed people’s looks. They didn’t seem to notice the wig and I didn’t get the same sidelong glances I get when I go out with just the turban. The shaggy thing hangs down into my eyes, covering up my lack on eyebrows.

In the bank I became boiling hot, and felt the remains of the makeup sliding off my forehead and nose. The girl behind the counter looked at me scornfully, what fright must she have seen before her? Her voice was very curt and unfriendly. In my hurry to get out I forgot to get my Euros for the trip to Italy.

As soon as I got to the RA I slid into the ladies loo and removed the wig. The turban felt much more normal.

Back in the Treasures of Budapest exhibition carried on where I left off before. I was stuck by a painting of Christ healing a man, by Tiepolo. It was so wonderfully humane with modern looking figures. I spoke to it, in my head, urgently, admitting for the first time how much I want to live, how much I don’t want to go back to that clinic. After the intensity of this I felt slightly better, as if I had managed to release my subconscious in some way.

In the afternoon as I was drawing St Roch, focussing on his sore leg with its wonderful sharply sculpted knee, my friend Helena appeared behind me. Then my friend Ann from the clinic also arrived. We had an enjoyable time in the Friends’ Room, with tea and shortbread, then set off in the rain and dark to the Discerning Eye at the Mall Gallery, Ann feeling her way with her white stick, whilst I limped along on throbbing nuropathetic feet, what a couple of old crocks we now are!

Quite a good show, lots of wine but no food. Prince Charles had two paintings in, the usual tightly constrained water-colours. One had some very tall, pointy poplar Cyprus trees, which made me wonder if he is having some sexual insecurities. Next to his work it said, “Price on application.” Much of the work was wildly overpriced, it would have been interesting to make that phone call.

He didn't win any prizes and neither did I. First prize, £5,000, went to a sickly looking confection called, “Strawberries and Ice-cream,” showing just that, one of those airbrushed, photographic things, without a visible brush mark. This was rather worrying as I thought the Discerning Eye was one show left which eschewed paintings which aren't paintings but copies. I can't understand why judges go for them.

Helena hurried off to get her train leaving Ann and I together. It was as if we both breathed out with relief – like two compatriots from a foreign country, eager to speak their own language together – ours is the language of cancer-land; symptoms, pains, lingering effects of the operation, what this doctor said, what that one said that was different, things other people have said, the reaction of her partner, feeling our way towards prognosis, and the fear which is the culture and the continent we share.

Friday 13/11/10

Letter from the hospital saying that when they last saw me I had, “no residual disease.” It added that we had had "a candid talk about the future."

All I need now is the faith to live fully. But I want to know that I am cured. If an angel appeared in my living room and said that I certainly was, I wouldn’t be that surprised to see him, after all this praying before old master paintings, but I probably wouldn’t believe him.

Monday, 8 November 2010

Living With It


The doctor said that if it comes back in a year they will be disappointed, if it comes back in two that won’t be so bad and they can treat it again. And then presumably again, and again. So, a remission of two years is good, not sure, her words are all muddled in my head, lost in a fug of dread.

She also said, “It is so early in your treatment, that we can’t tell.”

I’m at the early stage of it, the long haul, contortions which often prove so futile. I am not that scared of death. I can imagine lying in a hospice somewhere gently fading away, it’s the wretched journey you have to go on to reach that point which is so fearful and daunting.

To try and get on with a normal life again I arranged to meet a friend at the Royal Academy to see the Treasures of Budapest Exhibition. She is a “friend” of the RA and has a card for the Friends’ Room; I gave up my card sometimes ago as it seemed like an unnecessary luxury. Now seeing the queue for the restaurant and the impossibility of getting a seat in the café decided to join again, £85 just so that I can sit in the Friends’ Room without hassle or queuing. I don’t even like the Friends’ Room much, it is full of rich old ladies with short cropped hair and must be one of the most genteel spots in Europe. What the hell. What am I saving my money for?

The exhibition of the work once owned by the amazing Esterhazy family of Budapest is so extensive that I only get part of the way round, no where near the modern stuff, including the lesbians by Schiele, so craftily put on the poster.

It’s a wonderful collection but a lot of the work is about death and suffering. There are also some polychromatic wooden carvings of St Roch, showing his ulcerated leg, and St Sebastian wallowing in his arrow wounds. While the gallery attendant was looking away, I quickly touched the shiny wooden toe of both saints - invoking the ancient idea that touch can heal, magical thinking.

They are similar to the Spanish sculptures I saw right at the beginning of my ordeal. I can just about focus, but the doctor’s words keep reverberating in my mind. Realise that I am in a fix – it’s like a bad dream from which I just cannot wake and never will.

I asked her if any of her patients live to be old? She side-stepped me by saying that most are diagnosed when they are already old. I take that as a no, and the number five haunts me, as if I have been given a death sentence suspended for five years.

Being with my friend helps a lot, but no words can change anything and there is no escape.


Decide to buy a new car. Approaching garages and the strange creatures who work in them is as tormenting as anything depicted in those Mediaeval paintings, Hieronymus Bosch meets Arthur Daley, and that should take my mind off things.

Try out a Vauxhall and arrange to see a Ford, then decided to take the advice of the men in my local garage and go for a VW Fox. In times of stress, get a German engine.

Luckily for me, Adam, the salesman is Polish and quite civilised. It is actually quite pleasant being with him, he’s not some spiv from another planet who speaks an entirely different lingo. We go for a test drive. The clutch feels oddly high and stiff but I manage OK.

It makes me think of when my Dad used to get a new car, the excitement of joining him on the test drive, then the strange pride of the “running-in” notice he’d put in the back. In those days cars had an infancy and difficult adolescence before they somehow matured into smooth running purring beasts. He understood that process just as he understood how to deal with the senility of TV sets. We would shout out, “Dad, the telly’s gone wonky,” meaning that the line hold had gone again making the picture zig-zaggy, or people on screen looked attenuated or stumpy, as if they were in distorting mirrors. He would settle it with a simple bang of his fist on the top of the set.

Adam offers me a car warrenty of 36 months. I wonder which will run out first, me or the machine. What does he think, with me sitting there as bald as a coot? He gives no indication that he has noticed anything strange.

Signing papers I remember that I’ve also got a mortgage which has to be paid off in ten years. I might not even be here by then. It’s mind and spirit boggling.

I’ve got an endowment policy coming up in 2012 – what a magic sounding year; the Olympics, the Queen’s Jubilee, my endowment, and perhaps my death, or my mother’s.

6pm bonfire party at the vicarage in Ealing. Parking is restricted till 7.30pm By the time I find a parking space I have missed all the food and the fireworks. There are pans of greasy water containing no frankfurters and a slew of used plastic cutlery. People stand about in the dark as a small fire dies down inside a small brazier, eating rolls containing nothing except tomato sauce. Apparently there are vegetarian sausages in the kitchen, but no one wants them. Enjoy standing about in the wet holding a sparkler and chatting.

On the way home pay a call on my friend who looks after Maisie when I go away. There are a lot of guinea pigs on the carpet and they all stop whatever they were doing when they see me. They huddle together warily, except for one who stays in bed by herself watching me from a distance. Elaine has a new hamster. Another sign of modern times – it doesn’t look like a hamster to me. When I was a child hamsters were very small, square, pinkish colour and they were utterly boring. This is obviously a rat which has been crossed with a hamster or perhaps just lost its tail. It’s long and large, with a pointed nose and fine whiskers. He is also delightfully clever. He sorts everything she gives him into groups, putting all the things he doesn’t like into the area he uses for a loo. He keeps what he likes in his play area. Hamsters never used to put anything anywhere but in their pouches. They must be like A level students, increasing their intelligence exponentially every year defying all previously known laws of evolution.

In the evening when I get home and sit by myself my spirits sink and I think I might go mad. There is no one to help.

Saturday 6th Nov.

The shock of the doctors has passed a bit and I feel more confident. There is so much to do – I have to clear out a space under my stairs so that I can have the damp treated. There are boxes and paintings that have been in there since 1995. I am going to the church to volunteer to sell Christmas cards. American actress Elizabeth McGovern, currently starring in Downton Abbey on ITV turns up to open the new Christmas shop. She has tiny little eyes like currents and the skinniest legs I've ever seen. You don't get to see them on TV when she is dressed like an Edwardian.

The rest of the day is busy, I've got a painting to get on with, have to research my forthcoming trip to Venice, a friend is coming over in the afternoon and I am going to a film with other friends in the evening. Seeing people, being busy is the only way to feel that life is flowing normally again even though it isn’t.

In the church meet a young woman from Brazil whom I have seen there a few times before. We have a chat, she doesn’t speak much English but reveals that she thinks St Michael’s is a Roman Catholic Church. She obviously doesn’t notice that the Pope is never mentioned.

I tell her it’s protestant, Church of England but she looks blank. Realise I have no idea how to explain this to her. Someone from Wembley recently told me he has had the same experience with some Rumanian Catholics. There is a new kind of ecumenism, by mistake.

In Turnham Green tube hear two young Sikh boys chatting. One says to the other that it is very difficult to get by tube from Ealing to Hampstead. He says this is “social engineering,” and “by no means an accident.” I would like to talk to them about this, but they are going west while I am going east and as usual everyone is moving at a terrific rate.

Years ago I heard almost the same thing from the late, unlamented Bernie Grant. He said there was apartheid in England and if he set foot in the leafy streets of Hampstead he would be arrested. I never think about Hampstead as it is so far away, as remote from me as Inverness. Perhaps they have a police state up there and have influenced the BBC to keep quiet about it.

The young man’s words also indicated to me that he thinks Hampstead is wealthy and posh, and Ealing rough. That is another change. Only a few years ago Ealing was a very select place. A bourgeois suburb of expensive family houses. Now you can see the population is poorer, a lot of women are veiled, the shops are going down market with “pound-stretchers,” and charity shops arriving. The high street no longer looks elegant and expensive and seems to be joining up with Southall further down the track.

In London these changes can happen so quickly you don’t notice it until it’s become a new reality around you.

Wednesday, 3 November 2010

Goodbye Garry


Since my last scan I have been going through the motions of normal life but most of my mind is fixed on dodging cancer, as if I am on the run trying to evade an implacable enemy. I do this by considering everything I eat and drink, and even how I sit and stand, whether any elastic is sticking into me, adjusting my clothes in case they are too tight, trying not to make any wrong move, holding my breath – waiting to exhale but knowing I can’t.

At the weekend I had a very full diary - cinema, theatre, dinner party, lunch. I had a brief chat with Michael Gove in the National Portrait Gallery. I used to know him years back when he was on The Times and whether he really remembered me or not he was charming. As a result of seeing so many people I started to feel almost normal again. The anxiety began to fade but then I had the final consultation at Garry to face on Tuesday.

In the clinic I met Ann and Loretta and the nurses now looked familiar. It was nice to sit and chat, but then I had to see a doctor. I asked to see a woman as in my experience they are just so much more empathetic. This one was kindly and thoughtful, picking her words carefully. We spent some time looking at a cross section body scan scan of my insides, as if I had been cut in half and viewed from above. I saw my heart for the first time. What a bag of wonders, and the not so wonderful. "There is the poo full of air holes," said the doctor sounding fascinated. It's odd how doctors now choose to talk in nursery language.

“I want you to go away from here and forget us,” she said. That sounded good. But then we got into the longer term view. She seemed to think that the cancer would probably come back within two years. Worse, this seemed to be considered a long remission! There also seems to be a five year cut off point beyond which few people go. She did admit that no one can know what will happen. "It's so early yet in your treatment," she added. Not what I wanted to hear.

Back in the clinic Ann and I sat for a long time trying to convince ourselves that we would be among the lucky ones, bargaining with fate and statistics, reasoning that considering our blood, our scans, our treatment, we have every chance. A doctor had told her that it was 50/50 all a matter of chance – so we cling to that.

This England

27th October 2010

Visit Garry Weston for the results of the scan – all clear.

Don’t feel any elation or even much simple joy at having come through so well and got the whole thing over, because everything is overshadowed by the doctor’s grim prognostications. I was obviously an idiot to once think that it was a simple matter of getting the treatment and being cured.

I have heard that this is the way of modern medicine; kindly patrician doctors once kept information back, but now they give you the full works. It’s one of the many aspects of modern culture that puzzles and disturbs me.

Leaving Garry I discovered I’d lost my Oyster travel card. I was directed to Security. To my surprise, I can still be surprised by these things, the man in charge of security could hardly speak a word of English and had no idea what an Oyster card was. He asked a young man behind him who was sweeping the floor in the dark, closet like office. This man seems to have no English at all. I am sorry to say it but he looked just like a Coolie, a Chinese indentured labourer from an old Hollywood film. By a lot of shaking of heads they indicated that they hadn’t got whatever it was I was looking for – no point in asking them to have a really good look, as we would have needed a phrase book if not an interpreter.

Perhaps calling these people “security,” was just one of those modern euphemisms. They might have been what used to be called, “lost property.” There may be other forms of “security” in the hospital, but this encounter didn’t suggest anything very secure to me. The Imperial College hospitals are currently investing heavily in vivisection and a new block is going up at Hammersmith specialising in testing animals, this includes working on the best treatment for wounds sustained in military combat – any animal rights activists out there should take note – security very leaky under Imperial College umbrella.

On Sunday I had another surprise. Got to St. Michael’s early intending to sit outside on the war memorial to read for awhile before the kick off. Along with the smokers, I like to sit surrounded by the elegantly named Chiswick dead; Lyonel FC Wall, Derek Lutyens, C. Cecil Brooks Ward, C. Edgar Allinson, C. Ernest Brooks, Cyril Faustin, etc. It started raining so the smokers departed and I went into the vestry.

The jolly, friendly woman who works for a fair trade charity was setting things out for the small Sunday School, or "children's church" as it's now called, which goes on during the service. Her assistant hadn’t turned up so she asked me to help put out some crayons. I was quickly stopped by another woman who said I couldn’t do anything more unless I’d got a Criminal Records Bureau certificate to say I was safe to work with children.

I did have one, two years ago, when I was doing some tutoring, but that was not enough – to put out more crayons I needed to have another certificate authorised by the church. “But my assistant hasn’t shown up,” the fair trade lady explained. It was decided that I could stay when the children arrived, but only if the official teacher stood beside me at all times, making sure I wasn’t doing some compulsive kiddy-fiddling. I explained that I don’t even like children much, but that doesn’t wash these days.

The service included the baptism of a beautiful baby girl. As we left our pews and crowded towards the font the vicar beckoned us further forwards so that I was right up close when he poured what looked like a pint of water over her head. She looked surprised but didn’t cry, and when he up-righted her she looked quite content. He is terribly good with babies they hardly ever cry in his arms. Surprisingly no special CRB certificates were issued for the congregation but I expect he has to have one.

The baby had beautiful relatives, including a grandmother dressed in a velvet suit the colour of damask roses. In true Chiswick tradition the service was followed by champagne in the vestry. It amuses me that among those we are praying for is someone recovering from a skiing accident. We haven’t yet prayed for hedge-fund managers down on their luck but I might have missed that one.

Along with the champagne we had some shortbread and jam biscuits made by young Father Stephen on his day off. They looked like Jammy Dodgers.

A neatly dressed little boy came up to me. He was so small that I had to crouch down to talk to him. He told me very seriously that Doctor Who was a great fan of Jammy Dodgers. He described a conversation between the Doctor and a Dalek who’d never heard of Jammy Dodgers. Damn foreigners! I asked if he would like to have one. He said, “No, thank you, not at the moment,” and beetled off. I could see him as a Radio 3 presenter of the future. He was adorable and fascinating but happily I did not feel like molesting him.

Monday, 25 October 2010

Perking up again

I need other people to give me encouragement at the moment, and as usual they do. My new friend Ann from the clinic points out that if Agerwall’s 98 per cent failure rate were true, the Garry Weston centre would be overwhelmed with patients. It is crowded but that’s because it’s in such a small, narrow space.

Conner Middelmann Whitney conner@nutrelan.com who wrote Zest for Life, the “anti-cancer diet” book and runs the cookery school in Toulouse, suggests I look at David Servan-Schreiber’s book, ‘Anticancer,’ which tells the story of the author’s fight with an aggressive brain tumour. His cancer was diagnosed when he was 31; he is now 49 and still in good health.

Conner says: “that he writes in great detail about all the ways in which we can improve our chances of recovering from cancer, touching on a wide range of anti-cancer factors such as diet, exercise, stress reduction, meditation etc. He talks, among others, about these dreaded survival statistics, and how they’re just that: averages, means, numbers. His point is that you can transcend statistics by following an anti-cancer lifestyle. Accused by some critics of giving cancer patients false hopes, he accuses many oncologists of giving people a feeling of ‘false hopelessness’ and thus sapping them of the energy needed to play an active part in their recovery. Maybe a useful thought to hang on to? ”

“False hopelessness” – yes! That is exactly it. The result of being clubbed over the head with raw statistics. All you can do is forget them – and try to live.

Jo at 4myhead.com, replied to my blog and suggested cooking the “mind meal,” featured on the Mind Mental Health Web site.

On Friday 22nd I went out for the first time since I got back from Italy. I arranged to meet the friends I stood up before, while waiting for the nurses. We decided to have supper in Fortnum & Mason’s then go up Jermyn Street to the little theatre there, to see Black Bread & Cucumber, a one woman show by Caroline Blakiston, to celebrate Anton Chekhov's 150 birthday. She made history as the first British actress to play Chekhov in Russia, in Russian.

I enjoyed pottering around Fortnum’s, a thickly carpeted shop which sells groceries at unfeasibly high prices. It is strangely soothing just to move about between the stacked shelves of crystallised ginger (£20 a box) past the small chocolate Santas, (£20) and the packets of tea with accompanying silver strainers and spoons. I bought myself a 100 grammes of peanut butter fudge. The girls selling it were very pleasant, not sniffy about my little bill among people spending hundreds of pounds.

I did a bit of Christmas shopping in there, shortbread, Stilton in a jar, and ginger biscuits in elegant tins, then slipped out the back to Paxton & Whitefield which sells “exceptional cheese, since 1797,” at exceptionally inflated prices. It’s a good shop though, authentic, the stink of the cheese reaching right down Jermyn Street. They might have some of the original cheese behind the counter.

The customers always seem to be men, large ones in crombies, and young city gents who look as if they might be dining with the Camerons. It reminds me of the old El Vinos on Fleet Street, a rich but rough place with a masculine atmosphere where ladies definitely weren’t welcome. Women shoppers presumably prefer the safer less pungent climes of Waitrose.

I allowed myself a small triangle of Munster. It tastes good at the front of the mouth, melts on the tongue like chocolate but you get a strong bacterial, mouldy aroma as it hits the back of the throat. Always a good sign with cheese and cider.

The staff in there are friendly, but many of the clients are not. I said “excuse me” to a large ox like man, who looked a bit like Princess Caroline of Monaco’s husband, Ernst August, Prince of Hanover. He glared at me as if I was a fly on a bit of Gouda and ignored me for a few pointed moments before moving just a little out of the way.

While I was waiting for my friends I by passed Hatchards, the famous book shop which has hardly any drama, for Waterstones to pick up a copy of If So, Then Yes by N.F. Simpson. If you miss a play at least you can read it.

From the beginning there were some very amusing lines: Maureen Somebody said that life is like trying to put together a gigantic jigsaw puzzle by the light of a small torch in a dark room.

Geoffrey Though partially sighted.

Just what I have been feeling the last few days, about ambition, failure, unwanted change and the unknown future.

I have a different attitude to old age now, and to old people, like Simpson himself at ninety one. If they complain about their lot or about life itself I think they might have missed the point. What wouldn’t those people in the Garry Weston clinic and I give to know that we will live to be old?

The show was fascinating. We weren’t told why Caroline Blakiston decided to work not just at the Moscow Arts Theatre but in some very remote parts of Russia, but she gave a fascinating insight into life in the Soviet Union just before it gave up the ghost. She seemed to have acquired Russian easily and is obviously a very gifted woman. She came out afterwards for a brief chat. I asked her if she was going back to Russia again to work. She said there was nothing on the cards but she might. As I left she called out to me, “If I live.” Our eyes met and there seemed to be a spark of amused recognition. I wondered if there was something wrong with her too.

Next week scan on Monday, results on Wednesday, with Mr flippin it’s all going to go wrong Agerwall again. Better get used to it.

Thursday, 21 October 2010



Lots of travel in the offing - just been to Italy for the D Telegraph and they want to send me to Toulouse in early December. Also have Venice on the horizon for Private Banking Magazine. Physically I have no sign of cancer in my blood or on the last scan. I should be really happy now, but the doctors have taken away my hope.

My GP was so concerned about the views of Mr Agerwall, who told me that the chemo was unlikely to work, that he rang the hospital. He Spoke to a doctor today who said only a tiny percentage of people don't go back for more chemo and it is likely to come back within six months! This is worse than Agerwall who said within two years. How does one live with this? They don’t give any advice.

Doctors like to speak of ovarian cancer as a "chronic disease," no one ever seems to get completely cured, that would be tantamount to a miracle.

I don't look forward to a life like where chunks of the year are taken up by intravenous drips and nauseating drugs and how many rounds of chemo can they give before they call it a day I wonder?

This illness or rather the threat of it, seems to highlight that part of my life which has been a complete failure. I spent years worrying about not having a man, aching for love, yearning for a mate, “my other half,” envying people their weekend breaks and companionable summer hols, now that tumour on my soul has been replaced and largely shoved out by ovarian cancer in the groin. One nail drives out another nail, so strengths by strengths do fail – as Shakespeare put it, in his pessimistic play, Coriolanus.

The future looks bleak; no choice but to live from day to day to day, not looking ahead or envisaging the future and not looking back to such a short time ago, when life jogged on in a normal, hum-drum way, and there is no way this situation will ever change.

Tuesday, 19 October 2010

Epistle from Planet NHS

I wrote this letter 7/9/2010

Dear Claire Perry,

I am currently attending Hammersmith Hospital for chemotherapy. I am receiving good treatment, all is going well for me, but I must make a complaint about the treatment I received in the Victor Bonney ward, Queen Charlotte’s hospital after I was admitted there on May 4th this year for a hysterectomy.

While I was in there, there was no cold water on the ward. We were not assisted to wash in bed and I tried to take a shower. The water in the shower on the ward was scalding hot and I was left completely alone in the shower room, although I had just had an op and still had a morphine bag.

When I asked for help I was taken to a bathroom near the reception desk, where there was apparently cold water, again I was left completely alone, and I could not turn the cold tap on although I struggled to do so.

The nurses were curt and unwilling to help us. I asked for a drink of water but a nurse couldn’t give it to me although she was standing next to a sink. I lost a new nightdress which was taken away with the sheets and disposed of. The nurses I told about this laughed and found it very amusing. I spent some of my time in tears.

We were then told to leave the ward after only three days, regardless of how well or ill we were. The doctor who dismissed us did not examine anyone.

I realise this might be a separate issue as hospitals were required to meet targets on operations performed, without having enough beds. But the manner that we were pushed out was very unfriendly and distressing.

I knew I should make a complaint about the nursing on Victor Bonney but I was inspired to get on with it when my neighbour told me she had been in the VB ward too, and had received bad treatment. She told me the nurses were “rude and unhelpful.”

My counsellor, Philip Alexander, who works with cancer patients for the NHS at Charing Cross and Hammersmith also told me he had received several bad reports from his clients about Victor Bonney.

Yours truly,

13th October 2010 I received a letter from Imperial College Healthcare, Planet NHS, from a Keith Ingram, "Acting Associate Director," who deals with “Service Quality.” Sounds a bit like something from the railways but in this case you don’t get any complimentary vouchers.

He lists four people who’ve apparently investigated my complaints and states that “after checking the ward report book,” there were “no reported problems with the water supply during the period of your stay I am sorry that we are unable to provide you with any additional information.”

I go around making up complaints about water supplies for the good of my health do I? What is interesting is that my chief complaint, more important than any lack of cold water, was that twice I was left alone, attached to morphine bag, with scalding hot water. No help to wash, no supervision while I was feeble and light- headed. This was surely a lack of basic nursing care – but that is not mentioned early in the letter. Perhaps nurses no longer help people to wash, or stick around to see they don’t get turned into boiled lobsters?

Instead as a kind of defence, the letter brings up my cancer support nurse and says that I didn’t tell her there was any problem about going home after the op and being on my own. So we have moved on quickly to an issue which lies outside the Victor Bonney ward. A full page is then given over to this. Apparently we patients were “mobilised,” to avoid blood clots.

I pointed out that we were not examined before we were booted out. He says that Dr Yazan Abdullah, Senior House Doctor, “felt we were feeling well enough to go home.”

Yes but he didn’t feel us! Never put a finger on human flesh that morning if our round was anything to go by. Then there is a mention quite far down the page about my complaint that the nurses didn’t help me to wash – Keith Ingram has never been taught to write in clear paragraphs, his points are all mixed up. He says that a “Lead nurse” has discussed my concerns with her nursing team, “so they can think about events as part of their reflective learning.”

I can just imagine them sitting round on the nursing station, dunking biscuits and quietly reflecting on pesky patients unable to turn on cold taps and demanding assistance. When I dipped my toe into the cold waters of Further Education we had to keep a “reflective learning diary.” It was important to write one’s mistakes down, show how one would act if the situation recurred and this act of penance could get you a lot of marks at the end of term. The more “reflection” that had gone on the more you were, theoretically, a good teacher. "If a student spits in my eye I will never throw them through a window again, instead I will walk away," you write, and no one knows what will happen if that situation occurs again, least of all you.

Mr Ingram goes back to my cancer support nurse, who apparently doesn’t support anything I have said in my letter, because I didn’t mention it to her. I had no idea that I was obliged to discuss nursing care with her – we’d only recently met. I hadn’t even had my final diagnosis as a cancer patient. She was offered as someone to consult in the future. The letter says she would have “approached whichever nurse was in charge of the ward,” really? She is usually terribly busy and no one ever appeared to be in charge of the ward. There was a woman in blue uniform who would come in and glare at me in the early morning, but I don’t know who she was, could have been a passing member of the WRVS driven mad by the axing of trolleys. We never knew her identity and she was so scary it was better not to ask.

The upshot is – nothing to do with my unsubstantiated, mischievous complaints, but “a series of interactive workshops” were held, from May to April, called “The Caring Dimension,” to give nurses and their interpreters, “an insight into the Trust’s new values and behaviours.” Note that word “behaviours,” good old “behaviour” is no longer enough, it has somehow acquired a pompous sounding plural.

The trust’s “new values” involve nurses in “Caring.” Sadly they were only just getting the hang of this new notion when I was there. They obviously weren’t practising this new skill on patients and we missed out on it.

Q: Wouldn’t it be more economical in terms of money and time, if nurses and midwives were given a good basic training in the first place? Nursing used to be a “caring profession,” so why is this aspect only taught after they are qualified and there are complaints? Could they not even assess whether people are “caring” before they accept them for the training? There could even be a questionnaire along the lines of: Do you kick the cat? Do you deal in crack cocaine? Do you actually like people?

Due to a brand new checking system, in July the Victor Bonney ward received 93/100 as a rating for staff courtesy, with overall care rated at 88. It has shown “further improvements,” if that is possible this September. A bit like the A level grades – a hundred percent pass rate is in view!

So much for me, my neighbour and all that hospital counsellor’s clients who also left Victor Bonney recently, disappointed, appalled and upset.