Result.

25/1/11

The whole day seemed to be about cancer. This was because it started early with a relaxation class at Maggie’s. Last week they lifted a weight from my shoulders, I feel better, but I still needed to come to the class before going to Hammersmith to get my results.

The group wasn’t so intimidating this time. Some people never speak, some go on too much. When our leader asked for any other comments near the end, I said there is a problem about expectations. I have felt let down by a couple of friends and that plays on my mind. At night I get some bitter thoughts. This unleashed a gallon of tears from the others – most people seem to have these bitter blooms growing under their beds.

The young girl with brain cancer suddenly wept as she mentioned her brother, whom she feels has rejected her because, she says, “He can’t cope with it.”

I felt my emotions well up seeing her face as she said this. I managed to control myself but I am facing up to this tearfulness. I no longer want to cheat myself out of my own emotions. I spent years pretending not to feel things. Now I am surrounded by unremitting emotion and I am trying to allow myself to respond.

An elderly Irish lady told us that her two daughters no longer visit her, and her husband has left.

“I have my little dog,” she said, “and I take it for walks, but it’s not the same. Once I had everything, now I have nothing.”

My problems were nothing compared to these.

I’d brought some food with me and shared it out at lunch time. Quite a lot of people sat down at the big table and we all got rather jolly for a change.

In the afternoon I left for the hospital. My appointment was 2.45pm but I waited till nearly six. While I was sitting there I saw my cancer support nurse. What seems years ago now I complained about the treatment I’d received from nurses on the Victor Bonney Ward in Queen Charlotte’s. In their reply they dismissed my complaints and said they had discussed the matter with my Macmillan nurse. Now I had my chance to ask her. She could not remember having had any contact with them. Pretty much as I expected.

We sat there with our radical haircuts, strangely fashionable since that film, An Education, starring Carey Mulligan. I got chatting to a very brave, pleasant Guardian reading lady from Norfolk, but as the hours went on I realised I was getting a bit tired of people and I still had an evening class to go.

At last it was my turn. I had asked to see a woman as I am scared of the male consultants with their bravado. To me they seem like male TV chefs, what they do is not just about the end product, it’s also about them.

This doctor was young, attractive and cool but friendly. She asked me how I’d been. I told her I’d been stressed because of some of the things said to me previously by a doctor. Her smile tightened. She didn’t want to hear about any of that, and I felt a fool for saying it.

I told her about a few aches and pains, the same ones I had during chemo. I managed to mention aches around my, “xiphoid process,” which widened her eyes for a moment. I am taking an anatomy class and it has its uses outside drawing.

My results were all that I could hope - the CA125 which indicates the cancer was down to 5, it was 7 in November. Normal is 0 to 30.
She didn’t seem particularly happy, as one of the prophets of gloom she said they wouldn’t be able to fix my hernia yet, “Until we are sure the cancer has really gone.” An admission at last that it really might go!

A friend of mine was going to sit in with me, but I felt OK to be there by myself. She was getting her results later. When I met her in the clinic she was on her second round of chemo, after a remission of two years. She has two young children.

When I went back into the waiting room I saw her marching out towards the door. I waited awhile then thinking she must have gone home without saying goodbye, I decided to leave too.

As I left I saw her coming back up the long dark tunnel that connects one part of the hospital to another. I started to tell her about my results, not noticing anything different about her – the distraught expression, the staring eyes. Then I registered them. “Is everything OK?” I said.

“Nope,” she said. “It isn’t.” She broke down for a moment and I gripped hold of the shoulders of her sheepskin jacket. It was a moment of black despair.

“Jane, how can I face a third round of chemo?” she asked. “This whole thing is just a bloody nightmare,” I said. I couldn’t think of anything else to say.

Her husband collected her and I set out for Central St. Martin’s college of art, at their Back Hill site, up near Farringdon, where I have my anatomy class.

It’s a horrible building on a dark Victorian street. Filthy, cold, with no café and no lift but the teacher is gently charming, and I was glad to be there. As I stood at the easel trying to draw from Stan, our genial looking skeleton with a broken leg, scenes from the day returned with all those voices babbling away in my head.

Remembering my friend and that terrible moment I sometimes felt teary, my view of Stan on his Stand blurring. I’d had a reprieve. Others had not been so lucky. I had escaped, but for how long? If I’d had bad news what would I be doing, who would I be with?

Now I am busy again, the fear has lifted, and I wander about like it’s the morning after a bombing raid. I almost miss it, wondering where its gone. There is a an empty space full of small twinges and anticipation suddenly turning into dread then dying away quickly into nothing again.

Week of weeks.

23/1/11

Finally arrived; my week of weeks, the first staging post on my journey into illness or recovery. Which will it be? On the 25^th I will know.

Set out my shiny new artist's diary for the weeks ahead; playful weekends, films, meetings, enjoyable trips, but more chemotherapy might cut into that plan and wreck it.

I feel much better since I went to Maggie’s last week, what ever they did it worked. On my mobile my mother’s asked, “Well, what did they do?” She was really curious. It is no great mystery. They just provided some breathing exercises, a group of people, and then an intelligent, experienced listener.

Now that I'm calmer, the old question arises – just what am I going to do with the rest of my life? A friend asked me this last night and it was painful. I didn’t have an answer. Shall I be bold and make plans, or just tread water for the next ten years?

My life has changed so suddenly. Once I was scrabbling around for work, looking for a man, wondering how to advance myself as a painter, now all that has been wiped out and I mainly think about food, like the survivor from a death camp or an open boat. But this is what you are supposed to do as a cancer survivor, they even have a name for it – “mindful eating.”

I now lead a life of quinoa and green tea, in which every mouthful is considered. Today at a nutrition class we were advised to chew each mouthful thirty five times. I remember my grandparents insisted on twenty. Mindfulness and emotionalism, that’s new too. Almost anything can turn my eyes into pools of water, from babies being baptised to vague memories of dogs being sent into space.

There is the blood test tomorrow, then the dreaded result the day after. In my head I hear the doctors deliver the bad news in their detached, even voices. As if I am taking part in a film, I survey their faces as they say, “I am sorry. It has come back. There is something there.” They tell me that the quisling body which I now fear has let me down again.

I used to have the blood tests in a very blasé mood, with no idea that the blood, showing the CA125 was the key indicator of ovarian cancer returning. I didn’t enjoy them as my veins hurt and my main interest centred on the phlebotomist whom I thought was an insolent little tick.

Now I realise that despite his glib manner, every day he was sees women holding out their arms to him shaking with despair. Like them, the whole focus of my life is now on this blood test.

Keeping The Lid On

18/1/11

The next check up is looming if not glowering on the 25^th. Decided to visit Maggie’s again, for a relaxation and “stress management” class and then a one to one with their clinical psychologist.

Once inside its bright walls I was glad to be there, although part of me resented it as once you enter those red doors you are part of the “cancer community,” and there is no two ways about it.

There were eight people in the relaxation class, one of them a sad looking Swedish man aged about sixty in an elegant cable knit sweater and pale trousers. Our teacher was very jolly, like a big, friendly Labrador. As she began, I saw the half circle of people and felt a rising panic. Two bloody hours of this, I thought, and no escape.

She went on about the “many challenges” presented by cancer, the dangers of one’s “inner commentary,” especially if it sounds just like your mother’s voice, and the “thought components of stress.”

I suddenly felt stressed just being in there. We went round the room one by one, introducing ourselves and telling a bit of history. I heard their stories with increasing dread, they were all so calm, so brave. I suddenly wanted to run out and checked the distance past the sofa to the door, then I cracked and wept openly, swept by painful humiliation. I was last to speak and just said that I was moved by what they had to say.

The young woman next to me, so pretty and slim had brain cancer, another woman had two small children and a husband who resents her, the woman next to her was coping with her own disease, which has come back after four years, whilst trying to get her ancient mother into a home. An elderly French woman talked about her husband’s sympathy towards her and how he wants to do everything and she doesn’t want to be seen as helpless.

“If it doesn’t destroy you it makes you stronger,” said the woman with the mother.

Nietzsche didn’t know it, but chronic disease does both.

One of the other women is a patient of the doctor who scared me so much, when he said glibly, “Of course the chemo is unlikely to work.”

“He is OK,” she said. “Just don’t see him if he has students with him as he shows off.” So that was it.

The meeting went on with breathing exercises and having got my fear of the group out of the way, I began to feel very much better, cheerful and quite optimistic.

Our leader does not believe that stress is related to cancer, and made the important, very liberating point, that if you feel stressed and anxious it will not bring the cancer cells back. You are free to feel bad. She seemed to know all the ways in which cancer survivors beat themselves.

In the break we chatted and I noticed that almost everyone started their conversation by saying, “Well, you do look well,” as if that is the only positive thing we can say at first.

At lunch time there were the usual wan ladies at the table I remembered from last time; like a photo of survivors from the Titanic, sitting on the deck of the rescue vessel with blank eyes and dejected faces.

They were joined by various odd bods, including one dishevelled elderly man in heavy glasses who likes to chat ladies up. The elderly woman next to me said she had been offered a therapist but didn’t want to go “because of the stigma.” She began to ramble about her decorating, the need to replace her white curtains with lilac, asking if I thought that would be suitable? The newspaper in front of me got more and more inviting as she rambled on, but I managed to stay focussed on her. She said she’d recently learned to use a computer, although she is 75, and is using it for her art work, but then I couldn’t make out what sort of work it was. Eventually I started reading but she carried on talking.

On the other side was a thin elderly old gal with a shrivelled face and a bolt in her neck, making truly terrible noises, a kind of incessant barking, growling, choking and whining as if she was being strangled. Everyone ignored it. I glanced at her occasionally and asked her if I could get her anything. She shook her head holding a coffee cup up before her mouth as if she was trying to hide. I saw tiny scared eyes looking back. She had borrowed a leaflet about lung cancer, perhaps a little too late.

After lunch I saw the counsellor. He didn’t exactly impose his authority and came late which irritated me and because of the earlier class I was in a very lively, happy mood, not at all the way I was when I made the appointment. I wondered if I would have anything to say, but then he said something bereavement and loss, and I felt like screaming, and dived for the tissues again.

We covered a wide range of emotions and ideas, including God, whether he can interfere in nature, and relationships. I told him things about the past, disappointment and how I thought I had avoided close relationships in order to avoid loss and bereavement, and now it had caught up with me all the same.

“You seem sure that you are going to have bad news,” he said at one point.

“That is what the doctors have told me,” I said. “They want you to get better but tell you it’s unlikely.”

As a therapist he knows all about the power of suggestion. He said that the original Maggie created her centres to be somewhere positive and full of hope, well away from the doctors and their mechanistic routine. Helping people, as she said, “not to lose the joy of living in the fear of dying.”

On the way home on the bus I felt extremely calm, and composed, as if I’d had a complete catharsis. It was more relaxing than two hours in a floatation tank, plus CD and all for free. Maggie’s is a truly wonderful charity.

**************

At 10.30pm I picked up Nebulous, on BBC 7.

This is an hilarious parody of a Sci-fi series, starring Mark Gatiss as the stuffy English Professor Nebulous, the late Graham Crowden as something or other, and David Tennant as the evil Scottish Doctor B. That name was some kind of joke but I missed it as the puns and word play goes so fast it’s quite hard to follow.

This episode was all about health, or lack of it. Half the world’s population suddenly phoned in sick and seemed to have all the world’s worst, most disgusting diseases, real and imagined. “I wish I knew what to do about this to-do,” said Nebulous.

He eventually went down with “Tuesday disease,” when you can’t remember the correct day of the week.

“My brains are frying in the juices of their own fear,” he quipped. Many of us know how that feels. The best cure is Maggie’s, but didn’t appear to have one yet in outer space.

“You have been let down by your health. Health, the great destroyer,” said a horrible screaming robot. Well it seemed funny at the time.

Other People's Lives

I 10/1/11

I now visit a small health food shop in Turnham Green Terrace. It’s staffed by two lively youths who are very friendly and helpful.

Part with £20 for one small bottle of walnut oil and some Montmorency cherry juice. It’s like a new levy I have to pay; a hope of staying alive tax.

As I come out here the melodious fluting voice of a Chiswick lady saying, “I have heard that if you drink this green tea, it halves your chance of getting cancer.”

Remembered how scared I used to be of getting cancer. At the same time I was afraid of growing old. News of deaths of elderly people and old actors filled me with gloom. There is a saying that before the age of 40 you never think about death, after it, you think of nothing else. I used to identify with that.

Now I listen to reports of people’s deaths to ask anxiously what they died of? The actress Susannah York perished from cancer today, depressing, ominous, but she did reach 72. I now have no fear of growing old – it’s a cherished hope.

Picking Up Threads

6^th Jan 2010

Return to the V & A to draw and see an exhibition, the first time I’d done this since everything crashed in May.

Sitting in the café sketching, feel quite easy about it all, even though I now look and feel so different from when I was there before. At that time I was swimming every day, intending to get fit and hoping to go to Heatherley’s Art School in September. I had a plan for my life but at the same time felt rather empty and aimless a lot of the time. Now I am full of energy and fear, mainly directed at staying alive.

Finally got to the Diaghilev exhibition, which closes on Sunday. I visited his grave recently on San Michele, Venice, and was touched to see small pink ballet shoes strewn onto his tomb.

I admire him, not just for finding his genius and using it so effectively, but because he had such a good attitude towards money; spending up to the hilt, living from cheque to cheque, eating in the best places, daring anyone to notice his threadbare socks and frayed collar.

I thought the exhibition would be quiet at this time of year but the whole world, that is a world familiar to me, of cultivated middle aged ladies, seems to have arrived by the coach load. Perhaps we were all too busy before as Christmas now takes up most of December, everyone is trying to catch it.

The show is huge, we had a ticket timed for 3pm but didn’t come out till the gallery closed at 5.30pm. when we fell into the book shop where reproductions of the costumes were being sold for spectacular prices.

A panoply of vibrant costume, photos, film, old documents, short TV documentaries and spectacular backdrops. Some spectacular Tzarist jewellery and his death mask, which looks surprisingly small and youthful.

The most famous exhibit is the backdrop for Picasso’s Blue Train. It’s huge but no one says how they managed get it to that size. One man took 24 hours to enlarge the blue train from a small painting but it didn’t say how he did it. I find it hard to square something up accurately at A4 size, so this intrigued me.

One of the most interesting things was seeing very old film of dancers from the Ballet Russes. There they are – almost in the flesh and it’s often a surprising amount of flesh too. Karsavina, short, stocky with a large head was seen dancing very convincingly. Someone of her body shape wouldn’t get near a ballet class never mind a company these days.

Compared to the beginning of the 20^th century, classical dancers now seem absolutely standardised with a virtue put on starvation and androgyny. Some of the sensuality and individual character has been drained out of famished female ballet dancers.

10/1/20

Started swimming again at my nearby health club which I left last May. The last time I was in those waters I had shoulder length hair bound up in a cap, was a stone lighter and I had a lump in my groin.

I had a slight reluctance to go there again, no enthusiasm about jumping in, not just because the weather is so cold and miserable but because of that memory. Realise that I still haven’t got over the shock of the lump.

Happy Holidays

28/12/10

My anxiety seemed to get worse by the day. Watching repeats of the Two Ronnies, Morcambe and Wise and Dad’s Army, all I could really think about was the next blood test on January 25^th. Felt I couldn’t wait that long, so without telling my mother, I went off to see if I could get an appointment with the village doctor, but he was off until January 4^th. I walked about the village seeing the whole ghastly thing unfolding again.

30/12/10

Use hair shampoo for the first time since August. It’s coming back slowly, pepper and salt now. I think I’ll keep it like that, won’t bother with any more hair colour, a small sacrifice, a mark of change.

31/12/10

On one of my walks around the village, stopped at the lower church yard across the road from the church, expanding into the fields around. It’s much bigger than when I used to go in there at night to snog boys and drink cider. Looked for the graves of two locals I knew well who died in the last two years, Dorothy who always went to the same hotel in Weston Super Mare for her holidays, and Iris who was an expert with horses, dogs and poultry. Neither of them had any flowers on their plots at all. Stood there rather aimlessly, saying hello.

Someone had inscribed on a tomb stone: “Without you there is no perfect day.” A bit defeatist I thought. My sympathy is now squarely with the dead – at least you unhappy mourner, are still alive and kicking.

On the way back visited an elderly woman I know from the church. She had quarrelled with her son over Christmas because her loo broke down and he tried to fix it, but made it worse.

“I told him to leave it alone” she said, “but he would have ago. I was not there to stop him as I was out with the rabbit.”

I picture her and the rabbit making the slow bus ride from Codsall into Wolverhampton for the sales and coming back like my mother and me, complaining that there was really “nothing in the shops this year.”

Bed at 11pm. I have had quite enough of 2010 and don’t have the energy to even wave it goodbye.

2/1/11

I didn’t mention my anxieties to my mother until I was leaving when I said, “of course it could be anything, indigestion, wind, or muscular.”

“Well, you always do use your muscles a lot,” she said disapprovingly her chin going into her neck, as if that was some particular foible of mine, always out lifting weights or getting involved with construction work.

Back to London. Being a Sunday the roads were quiet but I got back in exactly the same time as usual. No matter what speed I do it always seems to take three hours. Must be something to do with relativity.

Spent another three hours exactly unpacking the car and sorting out presents, sales shopping and all the left over food my mother had unloaded onto me.

Found an Xmas card from another Linda, my third, but I only know two Lindas. Also a card with a double signature saying, “I bet this is a surprise for you!” It might be if I could read who they are. Another friend had sent me an e mail thanking me for the presents I sent to her children. She said my presents were, “Always thoughtful,” and Timothy Elephant has been a prized toy ever since they got it. Unfortunately he didn’t come from me. The last time I gave them a present in person the little boy went off screaming. I wonder if they think some other friend is really bad at sending appropriate gifts?

3/1/10

Maisie is in a big sulk. She did this the last time we came home from Codsall. My mother says she likes the stairs. I think she likes everything in my mother’s house, particularly the arm chairs, the large warm rooms and the 1970s gas fires. She sat with her nose in one until it was turned on, then lay spread out on the rug, looking like a really happy cat should. She took a great interest in my mother's large, flat screen TV but ignores my small portable set. I haven’t got any squirty cream either.

Don't Care Was Made To Care

The upside of cancer has been all the wonderful people I’ve met, and some of my attitudes have changed for the better. Even though I felt my energy drain away over Xmas lunch I stayed with it and concentrated so hard on our guest that I missed the Queen’s Speech for the first time.

I feel strangely fascinated by people, even my mother’s old friends, and want to hear what they have to say, whereas I used to drift off like a teenager, often removing myself bodily to my bedroom when they arrived. Now I want to stay put and enjoy them, perhaps because I might be gone soon and never see them again.

But from Christmas lunch onwards I felt increasingly anxious, especially in the evenings.

My mother would start watching TV at about 6pm with the obligatory hunt for the news which she felt had been so recklessly moved about in the schedules, and from then on I would feel my insides start to slowly clench, my stomach knotting as the hours ticked by.

I could feel there was something wrong, I had a pain in my diaphragm, a slight burning feeling, was it the bloating I wondered that is a sign of ovarian cancer, there was a strange vibration too, a bit like a stomach rumble but fainter, like a mild charge of electricity, sometimes it went down to my toes, what was that? I became convinced that the tumour or tumours had returned, but where they in the diaphragm, the stomach, the liver, and where are those organs exactly? There was no medical book in the house so I sat there full of unhappy fantasies like an old hypochondriac.

Life demands courage from us and it’s like a pressing debt, somehow it has to be found. Over the festive season I came across a few epithets to hold on to:

Critic Sarah Dunant on BBC4 looking at a painting of the Holy Family by Fra Lippo Lippi:

“It’s a difficult painting, but it says that if you can stay with the dark, you can see the Holy Spirit.”

On Radio 4 they had a programme about the poem, At the Gate of the Year

I said to the man who stood at the gate of the year
'Give me a light that I may tread safely into the unknown.'

And he replied,
'Go into the darkness and put your hand into the hand of God
That shall be to you better than light and safer than a known way!'

So I went forth and finding the Hand of God
Trod gladly into the night
He led me towards the hills
And the breaking of day in the lone east.

So heart be still!
What need our human life to know
If God hath comprehension?

In all the dizzy strife of things
Both high and low,
God hideth his intention."

It was written by Minnie Louise Harkins 1875-1957, a social scientist from Bristol.

The first verse was quoted by King George V1 in his Christmas Day broadcast in 1939 hitting exactly the right note with the public who were deeply apprehensive about the coming war. My mother remembers at that time having, “a feeling of dread.”

The poem had been given to the King by his wife Queen Elizabeth, and the first five lines were recited 63 years later at her funeral.

I saw a quote somewhere from the Dutch Christian, Corrie Ten Boom: “Never hesitate to trust an unknown future to a known God.”

And on a lighter note, I heard Islam defined by VS Naipaul as, "Sanctified rage."

The Big Day

25/12/10

A lacklustre Midnight Mass with electric lights turned full on all the time as if health and safety people had been round before the service to ban candles, darkness and any hint of drama. No atmosphere at all – just a lot of people in anoraks packed into pews enjoying a bit of something different after the pubs closed.

I longed for liturgy, candle light, glorious vestments, incense and proper ritual.

It’s the big day and my mother, aged eighty eight, does everything, just as she always has; dips the silver, climbs a ladder to find special crockery, cooks a giant meal with sprouts, carrots, broccoli, parsnips and roast potatoes, pork and turkey. Produces crackers, and special napkins, even squirty cream for Maisie the cat.

I manage to chop the vegetables and do the washing up, but apart from that her kitchen is a hostile foreign land to me.

We only have one guest to help us through the pile of food. Two other people didn’t make it because of the weather. He is an old friend of mine who has advanced prostrate cancer. He was given eighteen months to live about nineteen months ago. Before lunch we had a light hearted and typical cancer survivors conversation on the merits of Omega 3, goji berries and Manuka honey. When we start eating, wearing our paper hats, I couldn’t help wondering which of us will be sitting down to Christmas lunch next year? Even Maisie is old.

Taking up my thought he challenges me by saying he will have a bet with me to see which of us is alive next year, him or me. He seems to find this great fun but I found the whole meal a strain and when he left I felt drained and vaguely out of control, like slowly starting to skid on ice. I wondered if I would be able to keep the lid on my anguish.

Later I slipped next door to thank one of our neighbours for her Xmas present. She was so kind and sweet to me that I dissolved into tears.

Got there anyway

27/12/10

Despite all the dire weather forecasting and the snow and ice and poor visibility, my new car got me home to Codsall in the west Midlands in exactly the same time as usual.

As my mother bought me the car I felt I should take her out in it – as much as possible. The fact that there was hardly anywhere to go that would look enhanced in the dingy, damp weather which followed the snow was dispiriting, but we made the best of it with little sorties to local villages and garden centres. We were often almost the only people there.

The highlight was our trip to Brewood Hall, in the next village to Codsall.

The house has been there since 1660 but some how we had never really noticed it before. My friend Chris who recently got in touch with me again after thirty five years, has connections with the woman who now owns it, and he invited us over.

The Chatelaine is Jan C Ford, a most extraordinary woman, with a slight Hinge & Bracket look about her but a very kindly, enthusiastic face.

She is a professional engineer with her own company and she showed us round very graciously, followed by her old dog who has cancer in one of his rear paws and can’t put it down.

It was mighty cold, I was wearing a felt fedora given me as a Xmas present and my head with its lack of hair was quickly freezing. My mother said she was thankful for her long boots. It’s almost impossible to heat such a large old place. The radiators are not up to modern needs but as it’s listed she can’t alter it much. “I have almost given up on it at times,” she admitted.

She showed us original oak panelling and staircase and rooms containing treasures picked up on her trips to the Far East, particularly Burma. She has shipped back effigies of the terracotta army and a marble Buddha which is in the garden inside a specially built little house.

Most interesting to me was her railway room with the artefacts of the age of steam. She is mad about trains and although she doesn’t drive a car, she spends her free time driving steam trains. She has even piloted, if that’s the word, the Flying Scotsman. “For a long time my main interest was railway signalling,” she said. What a woman, why can’t more of us be like that?

She showed us her offices, the only warm bit of the building, big enough to be a normal house, containing the old bread oven. The walls were lined with ledgers with titles such as, “Transport Movements in Sedgely 1962-69.” A worthy topic for Mastermind, or a PhD.

The kitchen has the original fireplace with its stone surround, one side smoothly indented where people used to sharpen their knives.

She cut a large plate of corned beef sandwiches for us and entertained us on her harmonium, singing a spirited rendition of, “How you gonna keep them down on the farm, now that they’ve seen Paris?” She also showed us a film of herself on a steamer going up the Irrawaddy. She has started work building a school in Burma. http://janfordsworld.blogspot.com

An afternoon with her took my mind off all my own problems, a real tonic as they used to say.