Julia died yesterday afternoon at about 4.30pm. As a final word from Julia we all felt that this poem from her book 'Sudden Collapses in Public Places' summed up the scene. Although there hadn't been rain just a bright blue sky and spring breeze tripping down the Vale.
Eventually, I was placed on a bed like a boat
in an empty room with sky filled windows,
with azure blue pillows, the leopard-like quilt.
It was English tea time, with the kind of light
that electrifies the ordinary. It had just stopped raining.
Beads of water on glass glittered like secrets.
In another room they were baking, mulling wine.
I was warm with cloves, melting butter, demerara,
and wearing your pyjamas. My felt slippers
waited on the floor. Then the door opened
soundlessly, and I climbed out of bed.
It was like slipping onto the back of a horse,
and the room folded in, like a pop up story
then the house, and the Vale. Even the songs
and prayers tidied themselves into grooves
and the impossible hospital lay down its chimneys
its sluices, tired doctors, and waiting room chairs.
And I came here. It was easy to leave.
Posted for bev on 14 April 2005 at 10:15 AM GMT
Sleepy and tired
I am writing on behalf of Julia again, not being dictated to this time so you will have to bear with my lack of creative pizzaz that you are used to on Julia's web log.
It's really just to let people know that Julia won't be able to attend the launch of the boxes on Thursday night as she had hoped. She said to say that she is very sleepy and tired now but hopes that you all go along and have a great time. We received the first box hot of the production line tonight, and it not only looks fantastic but is packed with little treasures and ideas, along with postcards of Julia's poems and Emma's paintings.
Thanks to everyone who's being praying (including all the atheists) and for all your emails and cards.
cheers for now Bev
Posted by bev on 12 April 2005 at 10:15 PM GMT [Link]
Friday Night 8.15 staying alive
My body is just incredibly shocking. I can't believe it can look and feel so different so quickly and in such a short time. Both legs are very thin like twigs with podgy ankles and swollen toes. My tummy is like a children's toy or a Dickensian gentleman's pot belly. My upper body has thin chickeny arms and sticky out bones, and I am completely yellow, especially my eyes which are a livid ochre yellow. I could frighten children - and I like children. My little niece Ester and her sister Naomi came to see me today bringing drawings and books of activities to do when I was bored. I imagined what it must have been like to see this scene from a child's view from the ages of 5 and 8. It could be quite traumatic and a strange thing that one finds oneself writing about in a writing class years ahead. Then the nurses arrived and gave them lots of attention which would add to the general strangeness of the incident.
So what's the prognosis? I really really really want to get to the launch of the First aid kit for the mind at the Biscuit Factory next Thursday the 14th. I am using that as a focus to take me forward. Of course no one can tell me, or ever could how near my death is, but surely a body like this doesn't belong on the earth. We've bought champagne for the box launch and goodies and Emma and Smart have done so much to make postcards and posters. So if you are praying for me pray for me to have next Thursday - rather shallow though that may sound.
So much can happen when you lie in bed doing nothing. Although we've cut down on visitors I still really want to see people, but like in glimpses just to tell them how much they meant to me, for them this is like a boring santa's grotto with no presents (or they bring the presents). So don't all rush round. I must say every card I have received has been different. There's been no replicas, which I think is an amazing thing and I appreciate people searching through card racks, getting out the crayons, making home made books, and really eccentric funny presents that have made me laugh, and of course the music which I sometimes listen to all day and night as I drift through half dream conversations that I'm often not sure if I've had or not.
I hate cancer. It's taken me away from such life. Tonight I'd like to strangle it the way that it is doing to me but I must look at the dark horizon of chimneys out of the window and imagine what is beyond. But count your blessings - a. No pain unless I try and dance the hokey cokey. b. fantastic cusine cooked by my mother. c. No family arguments. d. No fear. e. Cornflakes and milk. f. Trina's ice cream. g. my new NHS bath seat and squashy mattress. h. You only have to do death once.
I know everyone worries and may have trouble finding out about what's happening and there are times when it is just really hard to talk on the phone or be bothered to check email but I am still here.
Posted by julia on 8 April 2005 at 08:42 PM GMT [Link]
Julia in Bed Dictating To Bev
It's ten past 7 in the morning and I have just finished my cornflakes and milk which has turned out to be my favourite food after all these years. The Po sisters are playing. In the last week I have discovered so much new music through compilations people have sent over. Sharon Bailey brought me the 2004 world music concert which I was sorry I missed. A neighbour brought round Rufus Wainwright, and I have been listening to the golden oldies like John Martyn and Dark Side of the Moon. The walls are covered with drawings and portraits that people have done or I've painted. Sharon has also been sorting out the cover of the new book Eating the Elephant and other Plays which we both like very much. Claire Malcolm at New Writing North is sorting it all out it's ever so complicated like all books especially books of plays, it's all that proofing and stuff. It's been like an office in here looking at fonts and post card designs for the 'First aid kit for the mind' with Emma Holliday and Smart. The first aid kit will be launched mid April (very soon), hopefully you will all find out where.
Last Thursday though I hoiked myself out of bed and went with Bev, Karin Young and Jackie Kay to see the dress rehearsal for the Manifesto for a New City at Hexham. Although I say it myself I really loved it. Jim Kitson's acapella arrangements are blissful and I liked what it was saying as well. It went down very well with the audience on two subsequent nights. It's sad that it's not on in Newcastle, though it is showing at the Customs House and Alnwick and later at the Tron in Glasgow. Usually when my plays are on I lie on the floor and feel like icy daggers are plunging in my heart so I must have done something right. It owes a lot to Duska Heaney and Alan Lyddiard but especially Jim Kitson.
I don't think I am going to be up out of my bed again, that's a funny idea. The last two weeks I've been surrounded by love and I've had everything I could possibly need but it's really nearly time to say goodbye and I'm not afraid of death just very sad about the people I leave behind. I'm not in pain which is as they say ' a blessing'. I get a bit sick of nurses peering at me. There are several things I would really like to have gone to but I don't think it's going to happen. So can I send my thanks and best thoughts to everyone out there because it's really a very incredible world. You end up talking in cliches at this point so I'll stop before I go really doo lally.
Posted by julia on 5 April 2005 at 07:33 AM GMT [Link]
A List of Sustaining and Odd Occurances That Can Happen Whilst Bedridden!
I am still mostly in my bed at home, but things have quietened down as the family have gone back, and a kind of routine has fallen into place that involved baths and small lunches and active bits and slow bits. I stay up so late, mostly night dreaming, but not asleep, about things I want to tell others or writing stuff that needs to be put in order, and presents that I want to give people. But here's some of the weird and peculiar and nice stuff that has happened.
Earlier in the week I was given the catalogue from the self portrait exhibition at the British Portrait Gallery. In this hub bub of ointments and pills, friends, tears and cranberry ice drinks, this book has given me immense pleasure. How we see ourselves is endlessly interesting and the text is fascinating, telling us about the artist's lives. Just looking at the portraits, you catch this feeling about the intensity of life..and most of them are dead now, but there they are, caught in time, staring back at me. In the First Aid Kit for the Mind that I am making with Emma there is a small pad and pencil stub, and a poem about how to draw one's portrait. Everyone should try and make one at some point I think.
The wooden lady, one of those bendy artist's model, that stands at the bottom of my bed moves when I am asleep. Her pose in the morning gives me a clue about the nature of the day. This morning she looked as if she was setting out on an sea of ice. I haven't moved her, but something has. There is, I think, a spirit in my room.
I don't like soppy cat stories much, but my cat Tigzi has been an incredible companion, kissing me often, hurling my earrings around the room, sniffing and chewing the beautiful flowers that arrive, never wanting much but displaying a range of theatrical behaviour I have never seen before. What is he trying to tell me? He is certainly not sorry for me at all.
Ice, and its many mutations. Someone has lent me their silver ice crusher. It looks like a 1920's cupboard and makes a sound like a concrete mixer. Drinks have become piles of glistening pink, yellow, and orange icy water.
God, the music! Why don't we all just give up TV and sit listening to music all night. This week I have delighted in John Martin's Solid Air (ice?). The voice solo from The Dark Side Of The Moon, Van Morrison's Ladbroke Grove, Gillian Welch singing about Elvis Presley, The Crystal Ship by the Doors. So much stuff that can take me anywhere that I want to go. Why didn't I go there before?
From Sean O Brien and Gerry Wardle, sachet's of Mauritian Vanilla tea which allowed me to remember the long warm beach of Flic en Flac we sat on this year. That tea is for me the essence of Mauritius (we were all there together doing workshops). Then as I raise the cup to my lips, the organiser (Jaysing) of the trip, who I haven't spoken to since the Summer, rings up.
Every flavour of ice cream.
Someone found a copy of The Taxi Driver's Daughter in Dehli.
I am definitely more stable,(physically, maybe not mentally) but the question is, where will my stability land, and how well will I be? Well enough to see my new play? Well enough to fly to Italy? To finish my novel? To become a figure skater? Or just well enough to have a good death, like a good birth.
Back soon. I like writing this, it fills up the foggy eastery nights.
Posted by julia on 28 March 2005 at 12:47 AM GMT [Link]
Thought It Was The End, But Now I Am Not So Sure.
What a unbelievable week it's been! Cancer is a disease of mountains and ditches, and I suppose this has been a particularly deep ditch. The hospice sorted me out a bit. They fiddled with my drugs, decided that I was allergic to one, (which I had never liiked anyway). I was rather delirious...very worried about Shelley's death on Emmerdale. Infact I think it was my main subject of conversation. I hated the thought of falling into icy water! And of course I was concerned about the rehearsals for A Manifesto For A New City, which had been going really well. I have such a work ethic that I find it impossible not to feel bad about doing my job properly, but of course no one minded at Northern Stage, and everyone just stepped into place and took the load.
On Monday I came home, swollen and loopy, to my wide bed and with a great sense of relief I climbed back into my old personality, which felt baggy and ill fitting.. A large part of my family arrived..mothers , sisters, daughters, babies, and took up nursing positions in armour all over the house. Doctors, palliative friends,district nurses, brothers, other friends all visited. My support team womans the trenches. The verdict is this: the new drug...faslodex, which is the hormone one, isn't working, so I am returning to the goddess Tam ( Hallo Jo Shapcott, I should never have left the temple, please let me come back). Even if I wanted to ( and I don't) chemo is no longer an option. My consultant has passed me on to the palliatives. So the best option is that TAM stabilises the situation again, ( which it has done before in 2002) but my liver is worse, I'm a bit jaundiced, and I feel as if I am wearing a heavy iron belt when I walk, and my arms look like something left after a chicken dinner. Why is it that cancer makes one look so weird? I think it's philosophical thing...we have crossed the line of beauty and only people that love us can still see it. However, I do look much better today, a week after the crisis hit. Acupuncture has been miraculous. I am having it every two days, and it has got this tired old engine working. The health service is actually being very helpful, but generally people like me go downhill quite fast. But my body has this strange rallying spirit, and acupuncture triggers this into positive energy. I am not deluded, but I can feel my mind taking control of my body, and the blood moving through my veins. I am still hungry, thirsty. I love the flowers, cards and music people have sent. It has all got delightfully vivid. Last night I invented a dance to go with a song I wrote with the Tulips about Wheelie Bins. I even have plans for The Wheelie Bin Ballet!. It's very difficult for everyone aound me, as we are all in an up and down state of shock, but on the whole I am not depressed. I feel as if I am at an absolutely GRAND party and I don't want to go home. Dying is like dumping a world that one loves. I am not quite ready yet. I'm not sure how it will go, but I might not go down the expected route just now.
I want to launch the First Aid Kits For the Mind with Emma Holliday for one thing. I want to see the Manifesto Play..and I want to get to Umbria!!! I want to finish knitting this blue shawly thing. And see the plants grow up in the garden...And today I got copies of the wonderful Bloodaxe Anthology THE POETRY CURE (please order from Amazon or Bloodaxe) that I edited with Cynthia Fuller at the university.
I am afraid that visitors are difficult to fit in with such a large family. And talking gets too tiring. Letters are lovely of course. It's only tonight that I have been able to get to my email, so I am sure that lots of people think I am dead or dying. I shall keep you all posted. Thanks so much for all your thoughts, that are playing no small part in this feeling of recovery!!!
Posted by julia on 24 March 2005 at 10:23 PM GMT [Link]
Sunday in the Hospice
I am in a perfectly pleasant small pink room with curtains with flowers on, pictures of tulips on the walls, a clock, a noticeboard, a hospital type bed and various hoists.
Through the windows there's a designer garden with several water features and sometimes little children run around over the little bridges. Whooping and jumping. It's really very pleasant. It's Marie Curie hospice. They tried to change the name to Marie Curie Centre but had to change it back because no one gave them any money.
Really they do anything they can for you. I've eaten most of the ice cream supply, had 2 jacquizi baths and set off all the alarms when wandering about at night looking for the Chapel of rest. There are plenty of cream cakes and jelly; the diet is homely rather than holistic. The truth is I feel pretty terrible and I look like a modern art painting with stick legs and a bowl belly. This is because my liver is distended and we are trying to work out how to drain off this fluid.
Both Manchester and Paris were lovely except I was sick in the Louvre. I am sick of being sick.
Everything seems to be falling apart a bit. I'd love to tell people to visit but I have the concentration of a goldfish. I am dictating this to Bev and the difficult thing is that really we don't know what's going to happen. I just want to be a pubescent girl riding on Tennison Downs in the Isle of Wight but then we don't know what will happen. You should have seen the Eiffel Tower at night it looked really pretty with its twinkling lights.
So don't try and visit as my vanity can't stand my appearance but do send healing vibes as they always seem to work.
I am surrounded by kind people who rub feet and plump up my pillows. I am terribly pleased that Gillian Allnut won the Northern Rock Writers Foundation Award and I thoroughly enjoyed the ceremony on Wednesday, with all looking so alive and poetry in the air.
I just want to feel like a normal person again but maybe it will never be! There are not many solutions left really as I don't want more chemo. x x.
Posted by julia on 21 March 2005 at 03:09 PM GMT [Link]
Staying Still, Feeling Peculiar
I am fine as long as I don't move too fast. This has probably been true all my life but I just didn't realise it. I used to worry about lots of things that weren't important. My swelly belly dislikes jumps and turns. It doesn't like sitting up much. I am very lucky to have a job which involves a sofa and a community of very nice people. Imagine driving a crane in this condition! Don't worry Manchester, I am going to get there tomorrow...a crane would be useful actually. I am being put on a train at newcastle, then picked up in Manchester. I am really looking forward to going to the old library. Last time I went there I was late, and I burst into an adult education class (were they studying family trees?) yelling 'I'm here! I'm here!'
I am reading with Chrissie Gittins which will be fun.
No, I can't claim that it's been a time of health and bounciness. I have had some lovely communications though. I just limped upstairs to the staff room in the university and found a delicious envelope with ruby sunflowers in it, and a painting.
The snow has been a bit overwhelming, but it's stopped now. All the daffs are closed, and mean looking, and I can't think of anything I feel like eating. I only like ice cream and yogurt. My face is much better since I started the Russian treatment, so that's great, and I sleep blissfully.
The Manifesto for A New City is in rehearsals as I write this. Eleven actors are singing their hearts out. The show tours Hexham, Newbury, Alnwick, The Customs House South Shields, The Arc Stockton, The Tron in Glasgow, and probably other places I have forgotten. I don't think I have ever had so large a cast since the days I wrote for youth theatre ! It's very exciting....and loud!! I am keen on loud singing. It clears out the dust. And stamping. I like stamping.
Otherwise, this weekend me and my family are going to Paris with little old easyjet. In my manifesto I ban easyjet! I shall probably spend most of my time lying on a different chaise longue.
I long to feel less swelly. Tomorrow I am seeing my consultant, but I doubt if he will have a magic cure up his sleeve. I need popping!
The First Aid Kit for the Mind is developing..I will let everyone know when we launch it. At the moment I am searching for things to make it smell nice...vanilla pods and cinammon. I am also sorting out poems for the cubicles of the local hospital. Also, the Bloodaxe Anthology is now orderable and looking beautiful....see Bloodaxe's catalogue on the web.
Love to all of you out there, may all our symptoms behave themselves and our nights be sweet as Manuka. Does everyone out there know about Quinoa....bloody marvellous stuff, keeps you regular!
This is turning into Nurse Julia's column. I shall aim to be more literary next time.
Posted by julia on 8 March 2005 at 03:35 PM GMT [Link]
New Symptoms, Tricky old February Days
February is going pear shaped. The good news is that the russian treatment..skennar (though I keep getting the word slightly wrong..is it stellar, or the chair lift word? Stannar?)) seems to work. It's early days, and I just had the one treatment, which is a bit like having a tv remote pressed onto various points in the body relating to chinese chi), but I had three face pain free nights which was lovely and miraculous. It's coming back a bit, but it would be wonderful if it worked long term after more treatments.
But the bad news is that my belly is swelling up and up, like one of Thomas Hardy's sheep, and I have to have it drained, and no one knows why it's doing it yet. When a new symptom manifests it is really scary. It's like a new cowboy riding into town, and you don't know the size of him, or if you are stronger than he is. You panic a bit, and think the worst. I have to find a way of naming him, of working out what he's doing here. I need to rally the opposition.
I have had so many symptoms, many of which have disappeared, but I always wonder if this is the mighty one who won't turn back. Tomorrow I have to go to the hospice to be drained. That sounds so serious, but really it's the time it takes up that I resent. I like it there now, much more than the hospital. They are very kind and you can literally get anything you like...they'll do anything for you!!
Meanwhile,the manifesto is in rehearsals. the actors are learning all the songs, and it is great hearing them sung out loud by a choir. Really joyous! Yesterday I was on my way to the hall where they are rehearsing and blow me, I tripped and ended up lying in the middle of the car park with my face in a puddle. All my things were scattered around me on the tarmac. No one was around. I wanted to wail and stamp, and of course I felt stupid and embarrassed. I got up and limped to the rehearsal and sat quietly nursing my gritty cheek, but felt very sorry for myself. Why is falling over so humiliating?
I had spent the weekend at a luxury spa, having holistic treatments and eating pudding in bed...the opposite of lying with ones head in a puddle. perhaps it has something to do with balance? You can't have pampering without a fall.
Anyway, I haven't got time to be drained, or to have most of the treatments that fill my week. I want to get on with my First Aid Kit for the Mind, with my novel ( I was thinking of knitting my novel) and with more poems. My body gets in the way of everything! You see how unbalanced I am!
Thanks so much for emails about the plays. I really appreciate them, and try to answer them all, but sometimes I fear that if I don't do it straight away they get lost in the inbox. I feel as if I am part of a huge creative community of knitters, poets and cancer survivors..a great sea of positive people!
Posted by julia on 1 March 2005 at 02:45 PM GMT [Link]
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