Julia’s Diary

Fresh and Januaryish

—04/01/2005

Just had a lovely facial. I am feeling really well after some fantastic sleeps…the kind of sleeps that make you feel as if you are floating in a field of feathers. I have had some good negotiations with my face pain. I think this is how one must deal with symptoms…sit them down and talk to them, and work out what gets them going. I reckon I have been giving my face too much attention. It needs a hot water bottle and a stern attitude. It hasn’t been half so bad recently.

Gradually normal life re-establishes itself…writers are drifting back into the English school where I work. Computers are humming, waste paper baskets are being emptied.

I have taken up knitting. It gives me enormous pleasure and I am sure it works as well as meditation. I am knitting scarves with holes in them for every member of my family!

This week I am going to Manchester to record ‘Appointments.’ I’ll be taking the knitting and a range of bath stuffs so that I can have swift recuperating breaks. I’m reading Bob Dylan’s autobiography….god, he was a bit of an old grump….not exactly a bundle of laughs. Yet, in Chronicles, there are some astounding passages of description and opinion. It’s worth looking at just for that. I was thinking how the song lyrics that we listened to as teenagers are ground into the core of our hearts, much more than any poem. I can recite Bob Dylan, Van Morrison, Patti Smith, Joan Armatrading. Songs are so important..we carry them with us throughout our lives.

My New Year was delightful. I danced up and down the street with the neighbours and hung out with glowing friends. I really enjoyed myself, drank alot of cava and ate large amounts of sweet cake.

But I like this January spartan feeling…I love clearing up the tinsel and baubles. I like the bare, hard look of things. I have bought a black jumper. Roll on 2005!!

New Years Eve 2004

—31/12/2004

mmmmmm……I have crept out of the country of Christmas and come to my room in the deserted university. Everything looks a bit dusty, waiting for instructions or something. It’s all been very happy though. I was staying in the Somerset levels, a place where villages were once islands, called Isle Abbots and Brewers and where i assume people rowed to see each other. We stayed in a warm, low cottage with pink walls and old beams, and ate red cabbage and goose and lay about like a tribe of happy monkeys. I got Patti Smith’s album The Tempest and Nina Simone, and a lovely zippy top, and bath stuff and interesting sweets and a beautiful home made cushion, and Bob Dylan’s autobiography. I read Bernice Rubens Nine Lives over Christmas, which was a bit frightening, but very good. I slept in a large iron bed, got up late and went to bed quite early. hardly watched any telly.

My face continues to be a bit of a problem. It feels as if it’s wrapped in an icy sheet, or that someone is poking small sharp pins into random parts of my cheek. It makes it hard to concentrate. Chewing is strange too. Also I keep on falling asleep. I think this is to do with fiddling with drugs. Sleep is so delicious though. I really love it. My insomnia days are quite gone. It’s a cave I can always retreat to.

Today, on New Year’s Eve, I am feeling quite tip top. This evening I shall wander around my street eating other people’s old mince pies.

Truthfully, I am frightened of 2005. God knows what will happen. It’s best not to think about it too much. I never thought I would get this far to be honest, though my legs still seem very beefy, and I have lots of things I am looking forward to this year. Poems are buzzing around my head like brightly coloured insects ! I am not going to make any resolutions. One day at a time, I reckon. Turn up the music!

I hope everyone out there is approaching 2005 with a sense of amazement. It’s not even cold any more! Outside it’s all light blue and pink. Have a good time tonight!

Sleep and Drugs and Sudden Recoveries

—16/12/2004

I am getting on top of all my ailments, thanks to the hospice twiddling with my drugs. There are still some twiddles going on, as I am either too exciteable, or too sleepy, but my aching face is much improved, and my foot is all right. In fact I think I am nearly a normal person again, so thanks again everyone for the avalanche of soup recipes and good wishes that seem to keep me afloat!

Do you know they tried to rename the hospice….to call it The Marie Curie Centre? But they couldn’t raise so much money, so it went back to being a hospice. I have been thinking up names , such as Centre For Balance, House of Love and Drugs, Palace of Improvement (now I am getting silly!). I doubt if anyone would donate money to a House of Love and Drugs. Anyway, I spent Tuesday there while they did the twiddling and it was very pleasant. The walls were pink, and there were the usual flower pictures on the walls, but what was I expecting…Jackson Pollock? The food wasn’t as exciting as I was hoping. It was quite hospital shaped on plastic plates; roast parsnips, mashed potato, steamed pud. But I did realise that I didn’t need respite. By the end of the day I was aching to go home, full of beans, pacing the quiet corridors.

I’ve got lots of stuff on the radio in early 2005. On Friday 21st January I’ve got a story being read by Gina Mckee (the one from Our Friends In the North) at 3.30 on Radio Four, and Appointments are being broadcast on Women’s Hour in Jan/Feb. I will post up the date as soon as I get it. In early January I am going to Manchester to take part in the recording. I love radio work, and meeting actors, and being on the spot changing stuff. Can’t wait. And I am staying at a posh hotel next to the BBC with huge baths and chandeliers, so that will be very appropriate.

I’m spending Christmas with my family in Somerset. Can’t wait.

A Rattly Week

—10/12/2004

What a mess of a week it’s been! It’s midnight on a Thursday night, and strangely my energy seems to have returned, so I’m writing this in bed, drinking a tasty mug of Horlicks. Outside a lonely dog is barking somewhere in the Vale, but otherwise it’s dead quiet. Yes, everything has gone pear shaped this week (that’s a great expression I think, whoever made it up!). I was put on some new drugs with unpronouncable names last Friday, all with the best intentions, like to stop my face aching, but I kept on falling asleep and having delirious thoughts. One thing I thought was that you could send soup by email, as an attachment, and I believed this completely for quite a while! I was also on drugs to stop the side effects of the first drugs, and these had other side effects, like being dizzy and sick. Altogether I feel that my cancer, and probably any chronic illness is all about finding a balance, and that any change can set off all kinds of things. It’s like that game Spillikins…one wrong move and the whole edifice collapses! Yet I also know that the aim of most medical people is to help, and that everyone wants me to feel better. But I am a real Pavlov’s dog when it comes to taking pills. I have all sorts of mental prejudices, like I don’t like yellow pills as they remind me of chemotherapy and make me feel sick, and I can take against a drug for all kinds of reasons, like the name or the packet. There are also drugs that are very much my friend, like tamoxifen (O Hail The Goddess Tam!) which saves me, and pamidromate which strengthens my bones (apparently chronic bone disintegration has almost gone now thanks to pamidromate). I have mixed feelings about steroids, but I will take them, and I have high hopes for the new hormone drug fasledex (spelt wrong I am sure) that I may soon be taking. Lately I have been unable to take some Chinese herbs because they smelt of poo, but I am sure I am not alone in that!

Anyway, things really felt wrong this week, although of course it could be the illness flaring up as well as the drugs. On Wednesday I woke up unable to put any weight on my left foot, so I had to crawl about on my hands and knees. The cat liked me in this state very much. Doctors came round. There were many phone calls. It’s being suggested that I go to the hospice for assessment, which is probably a good idea, but it makes me feel a bit like the end is nigh. My sister who works in a hospice says that dying is only a small part of the work of a hospice, and that it’s very satisfying having people come in with all their muddled drugs and symptoms and sorting them out so they can cope with the world again. Also the food is supposed to be lovely and I can’t be that close to dying as I am very interested in food.

If I do go to the hospice I shall write about it in great detail, so that other people who are scared about it will see what it’s like too. Perhaps they should stop calling them hospices and call them something else instead like refurbishment centres.

Anyway, today Bev and I were sent up to casualty so that they could do an xray and see if my foot was fractured. I had to be carried up the steep steps of our house in a firemans lift, or a queen’s seat!

We waited for three and a half hours in an awful waiting room with extremely loud childrens tv on, though there was not a child in the room. I rarely sit up in hard chairs these days, even in nice restaurants with people I love, and I felt so stiff and uncomfortable. Finally we found out that my foot wasn’t broken. They gave me some paracetomol and some crutches.

Now I am home, and my foot is wierdly better. I am just feeling so annoyed with cancer and the way it steals the days. There is so much I want to do and write, and I suppose I am no good at being ill. I’m not very zen. When things go topsy turvy we all get unnerved and upset, though usually things pass and restabilise.

Good things this week have been ….. listening to poems and plays on the radio. making an extremely tasty chocolate cake (a nigella recipe) , spending time with my daughters…writing poems…dreaming.

The television really makes me feel sick though. I don’t care who wins the X Factor, and the jungle thing was very boring I thought. The only thing I quite like is Richard and Judy and playing You Say We Pay. I hate those Place In The Sun programmes. I am sure all those people who go and live in vineyards get too hot and homesick. I’m ranting. Tomorrow will be better.

Blood and Songs

—06/12/2004

I spent two days in Manchester last week with my friend Jackie Kay, happily getting on with some writing. Some people are really easy to write with, and Jack and I have had many happy weeks in houses and cottages all over England. We just get into a routine very quickly, interspersed with the odd tasty meal and chat, but on the whole we are both very hard working. We don’t watch TV, or drink, or even stay up late! So that was a very happy couple of days. Then I came back to Newcastle, feeling a bit weary, and the next day at my regular hospital drip of pamidromate I found out that my blood was at an all time low. In fact it’s amazing that I was still walking about at all. So they said I must spend the night in the dreaded Ward 37 and have three bags of blood. I’m afraid of Ward 37. It’s where I’ve met demons and been in terrible states of crisis. I managed to think positive thoughts about it, and got through the night without any grumbles. I didn’t sleep a wink though. I watched late night murder films on the new flashy telly above my bed. I ate an incredibly awful meal of yellow soup, followed by black brussel sprouts and a kind of mushroomy mess of sauce and herbs, then rice pudding. It made me want to laugh.

After the transfusion I felt so much better, pinker and bouncier. I am very grateful to the blood donor out there who gave me this boost. I even managed to go Christmas shopping! If I hadn’t had the blood I doubt if I would have had the energy to read last night at the Northern Rock Writers Prize Launch, standing at a lectern in the flouncy cinema, between Ann Stevenson and Tony Harrison, who are both Northern Rockers like me.

Then Bev and I scooted down to Live Theatre where Zoe Lambert and Dave Scott and Neil Blenkinsop and cellists and bassists and trumpeters were playing a song cycle from Sudden Collapses In Public Places. The theatre was lovely and full, and I found the event completely rivetting. There is something wonderful about having ones words interpreted by gifted musicians, and Zoe sang so magically, yet without over milking the pudding, which is so easy to do around cancer issues. It was, for me, just a lovely night, and I so hope that it can be repeated.

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