Tuesday, 3 August 2010

Chemo Sunday

1/8/10

Sunday following chemo is my worst day. Four days after chemo seems to be the worst day for slumping down.

Nothing much is expected of you on a Sunday, but it has always been my special day, which I liked to fill with fine food and high activity, and of course it is a notoriously long day, so oddly elasticated that I’m surprised Einstein never commented on it.

I forced myself out of bed to attend St Michael’s Church at 10am. I felt a kind of jittery nervousness, something about being among people, being part of a group, having to show myself.

It was a “Family Mass,” even though most families seemed to be on holiday and it swept swiftly along, enlivened by a witty sermon from Sarah Lenton, one of our ministers who is also author of a book called, Backstage at the Opera.

Then at the Mass something went wrong and I didn’t get any bread. The woman holding the chalice forced me to take it even though I was indicating with my hands that I was waiting for the bread. She gave me a tiny sip of wine and moved on. I felt devastated. Back in the pew I whispered to the woman next to me, “I didn’t get any bread. That’s terrible, a terrible omen isn’t it?”

“Not at all,” she said sensibly. “It doesn’t mean anything. There was a problem with the servers today.”

She had tuned in instinctively to the omens game and was reassuring, but I went home feeling disgruntled.

I longed for company at home but at the same time didn’t want to see anyone. By 1pm my head felt like my foot, sore and throbbing. The tingling in the soles and fingers had shifted to my scalp. Then came the aching joints and fingers and a horrid taste in my mouth like cheap, burnt coffee.

I started on the annual tax returns, not a very good idea as the tax year, running from April to April always befuddles me at the best of times. Maisie wouldn’t eat her food and kept disturbing me, and I felt myself becoming exasperated.

I did not risk trying to phone the Virgin Broadband people to try to establish what I actually pay, having long ago lost track – any contact with them and their endless number options and musical sound tracks would definitely lead to tears and screams. Then came short sharp fizzing flushes up my arms, stabbing pains around my ribs and my energy drained away.

Too tired for lunch and unable to taste anything anyway, I lay on my bed, bored but weak. What I needed was a cool bed and a perpetually cool, crisp pillow.

But feeling comfortable even for a few moments immediately leads to sleep, and I can’t listen to anything or read anything for more than a few moments. Started re-reading an old novel, so old that it is heavily stained, its been through two floods in my flat and is falling to pieces in my hands and should have a public health notice put on it. Read about a page, fell asleep and immediately saw a man in a Fedora holding a gun pointing towards me. I wasn’t too scared just a bit dismayed, wondering how to respond but I am getting used to these unpleasant people appearing, threatening, or offering me something slyly erotic which I can’t bear to see.

Awake again I tried to focus on the old book but drifted off into another dingy, dirty sleep.

I am a stranger to myself, hot, sweating, full of bitter thoughts, full of Paclitaxel, derived from the bitter bark of the Pacific yew tree. The names and faces of people who have let me down, not supported me, disappeared from my life because of this illness, flicker back and forth, all the kind, unexpectedly generous people forgotten. By 5pm a beautiful Sunday has been soaked in acid and chucked away.

On these chemo-Sundays the torpor drifts into evening where there is a brief attempt to rally to do something, then nightfall, which is worse. Waiting for the murderous, sexy phantoms to descend I lie in bed listened to music, a new support I have recently discovered.

I never used to bother much about music, I couldn’t get a purchase on what it was saying, but now I realise how it can wrench the spirit up where words are useless. In fact when you feel ill, words can seem like bullets or stinging insects, they can drive you crazy, but on chemo-Sunday you can lie there listening to Mahler and be saved as you float away down stream.

Having a rest.

Like most people I got back from chemo drained but fizzed up and almost elated because of the steroids.

Pamela uploaded some images onto my blog. I couldn’t follow what she was doing as I was too far gone and chemo has aged my brain by about ninety years.

With a last bit of energy I accompanied her to the tube. On the way out I saw a black and white cat on my front garden. She had round staring eyes and looked a bit stringy and frantic. When I got home the cat was crouched inside my old coal hole. I gave her some food and water, she seemed to be very thirsty, and put a blanket and some newspaper in for her.

In the morning I took her out some breakfast and saw a tiny head beside her own in the gloom – one grimy black and white kitten about eight days old looking quite content. I started to run about, the way they used to do in The Lucy Show, when a baby was going to be born, when they’d all shout, “boil some water!”

At about 11am, redoubtable Roz, from Hounslow Animal Rescue arrived with an old wooden trap and started perching on the steps outside my door attached to the end of a thin blue chord, hoping to lure the mother in. At the sight of all this activity she did a bunk over the wall.

By 4pm when there was still no sign of her Roz decided to take the kitten to the local vet and returned with an automatic trap.

I sat by the trap for two hours until I had to rest before the arrival of one of my private English students.

A friend messaged me to say that a cat being born on your premises is good luck. A very good omen.

Mira arrived at 7pm, also with round, staring eyes and looking a bit frantic – this is because she is starting a course of post-graduate teacher training in Further Education (FE). This used to be a PGCE certificate with world renown, but has recently been renamed CELTA, an acronym not known to anyone at all.

As I know from when I took a qualification and did some college teaching, FE is the last bastion of radical education – mixed ability, all inclusive, more an ideology than a method of education.

Coming from Poland the beauteous Mira is used to certain standards, even some formality. Poland is changing fast but still not a place where priests are pelted with wet sponges or teachers addressed by their first names. She finds the course bewildering.

“We are not allowed to do any dictation,” she told me, “as it is considered old fashioned.”

We reminisced about old dictation tests in school, which were always deadly difficult and often quite a laugh. “They are not allowed to read round the class,” She said. “No reading of their own work in case they mispronounce things and feel embarrassed, and you must only use words that they know already.”

We reminisced again about the time when many children and students treasured big words like gob-stoppers, and embarrassment was an essential part of education, always a hovering threat.

She has been given a chair with five wheels and says she just has to “float” around the class room on this, because on no account must she rise above the students.

“Because looking down on them from above is patronising,” she says doubtfully. “I just have to float.”

Handing out sheets to the students she is not allowed to say, “next, we will do this.”

“I must not give any orders,” she says in her gentle very un-authoritarian voice.

“To explain, you don’t say, “now were are going to listen to a tape,” you just play it and avoid all instructions – it seems to me, how shall I put it, un-natural?”

During my time learning to be an FE provider, I won’t say teacher, in 2007 we had lessons on what we could and could not say. “Brain-storm” was banned in case if offended epileptics. We had to watch out for the dreaded stereo-typing which one hand-out said had directly caused The Holocaust, and remember to use correct body language at all times.

From what Mira said things seem to have progressed even further, with teachers are finally being turned into voiceless “facilitators.” I ponder again the painful paradox that in the headlong pursuit of “education” as a kind of essential product, like fridges and washing machines, we seem to have become less educated.

It reminded me of a Polish friend of mine who came here with a school age child and said to me, “Jane, what age do children here start to learn?”

“We are not allowed to use capital letters when writing on the white board,” she went on unhappily, “in case they offend certain nationalities.”

Anti-capitalistic nations presumably, but there aren’t many of those left, except in the minds of FE educationalists of course, who permanently live in a combination of Berkeley University and Paris c 1968. That is putting it kindly of course. I suspect that some of them yearn for a kind of intellectual year zero.

In the middle of this I heard the automatic trap door drop down. Mother cat had returned, nearly ten hours after leaving her kitten.

The next day, Friday, I felt my energy level go down. Roz reappeared to take mother off to join her son at the vet’s. I received messages from my Japanese friend Kayoko saying she wanted to come round. I texted her not to come, as I needed to sleep. An hour later she arrived with her smiling friend Itchiko, from the mysterious, tropical island of Okinawa.

As I opened the door I heard a high fluting note like a bird, but ignored it as my heart sank, I really didn’t want to see anyone. I just wanted to sleep. They came in bringing me a flourish of pink lilies, roses, carnations and a water-melon. I felt apologetic for my reticence and we sat in the garden chomping through the melon, discussing the different ways they eat it in Japan, while I longed to be alone in bed.

Itchiko said she wanted to learn how to draw as she’d never done it. I gave her a notebook and a couple of soft pencils. She began sketching me. This was a good cop out as it meant I could sit glumly silent. I didn’t expect much but when I saw it I was astonished at how good it was, a likeness and sensitive lines.

As ever, the Japanese are full of surprises, such strangely talented people. I remember seeing a documentary about some old people from Nagasaki who were encouraged to draw their memories of the day the great bomb fell on them. They produced wonderful works of art. I was puzzled at how so many of them could do it, so effortlessly.

Kayoko said, “But why is it that English people can’t draw?”

I don’t know. I love questions from foreigners about the English as they are so startling and I can never answer them. Even without chemo I am like a ninety year old in the confusion and bewilderment with which I view my country now.

The next day I decided to go to Maggie’s for a party. I had planned this for some time bought some biscuits and kept the invite on my desk. While I was writing I heard a high piping sound, like a bird, and dashed out of the flat. There were still three kittens in the coal hole, buried under the newspapers.

I began to tear about again, looking for something to put them in. I had nothing but an vast old wine box. I put them in on top of a dirty old fleece that had been hanging in the hall for years. Maisie appeared and looked bemused. She is not herself either at the moment and will soon have to go to the dreaded vet's, dreaded because of the extraordinary cost.

After calling Roz, who was busy as ever saving strays, I decided to drive to the Hounslow Animal Rescue centre, park and walk with the box, up the Chiswick High Road to the vet’s where the mother was.

The vet nurse said they were up towards Hammersmith so I began walking that way, on and on. Then realised that I must have gone too far and turned around. I asked people, some directed me, but the box got very heavy and I felt sweat pouring down under my headscarf.

Eventually I met a young couple who offered to carry the box and we arrived at the vet’s just as it closed. I saw the kittens re-established with their mother who licked them happily, unaware that they’d been lost for two days. No sign of the first kitten who would have to get used to no longer being an only child.

Leaving the vet’s I could not tell which way to go – where was my car? No idea. The Chemo-brain strikes again, and I now know what it must be like to be demented.

I phoned Roz and she gave me directions back to my own flat, thinking I was in the car. “No, no I’m on foot!” I heard myself screaming. It's a horrible sensation, a feeling of being completely lost. When I spotted a bit of the Chiswick High Road which I could identify I felt the relief of a swimmer who has nearly drowned in a gulley and suddenly finds a bit of beach to crawl up.

Safely back in my car bathed in a clammy film of sweat I gave up the idea of going to Maggie’s, or anywhere. At home I checked the coal hole again, silence, and switched the phone off. Four cats born on the premises – now that can’t be bad.

Saturday, 31 July 2010

Chemo Three.

Chemo 3

28/7/10

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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



Thursday, 29 July 2010

Nearly half way through

27/7/10

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wednesday, 28 July 2010

Getting the Diagnosis May 2010

Self Portrait

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

From the Stuckist artists web site.

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


Experiment with headscarves