Julia’s Diary

Thought It Was The End, But Now I Am Not So Sure.

—24/03/2005

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!!!

Sunday in the Hospice

—21/03/2005

Hello Everyone,

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.

Staying Still, Feeling Peculiar

—08/03/2005

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.

New Symptoms, Tricky old February Days

—01/03/2005

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!

In A Dreamy Snow Storm

—22/02/2005

Yesterday I spent the day in bed writing, being a delicate writer. There is no shortage of ill writers..infact being bed ridden rather suits the writing profession. I listened to my radio play, but of course the phone kept ringing as it often does when you are trying to listen to the radio. Outside great fists of snow were falling and the room felt soundless and wrapped in bandages.

I was writing poems (spells and recipes) for my ‘First Aid Kit for The Mind,’ and pieces for A Manifesto For A New City, which starts rehearsals next week . I am also putting together a book of my plays and remembering the context in which they were written. They should be coming out in July. It’s amazing how many versions there are of everything. It’s all a terrible muddle! I feel as if I am tidying everything up. It’s nice, and so is the snow.

Being interviewed by Jenni M was a bit daunting. I had been to the doctors earlier for my faslodex injection, then zipped up to the BBC to do the interview down the line. They were really slow getting me hooked in and the interview felt rather sudden. Also, Jenni never said hallo, or goodbye, so it was a bit like suddenly playing an intense game of tennis with a virtual stranger. All the other radio things I have done one talks to the presenter for a bit. Anyway, I got through it, but I had to go back to bed and get up again and start the day again.

I have had so many interesting, uplifting emails from people who either heard the interview, or who read the Times piece, ( I would call myself more of a hiding-under-the-blankets woman than a warrior woman! Still I thought the editor, Jane Wheatley, did a wonderful job selecting excerpts from this blog) or who are listening to the plays on Women’s Hour. I have tried to reply to everyone, and I really hope I haven’t missed anyone out. It’s so encouraging to hear from other people with cancer, or poets, or people with ideas about writing and health. And thankyou for all the tips about face pain too. I am going to try a russian treatment called stennar. Not sure what it is yet..perhaps a contraption you lie in, like a space machine !

I had a very quiet weekend. Everyone else was away and I sloped around the house scribbling things in books and knitting (a blue and white blanket) and staring out of the window at our long steep garden. I feel like a bulb that is thinking about Spring. I am still reading Small Island. It’s really good, but I don’t long to return to it. I am not sure why. Dreamy days ! Thank god for porridge, yogurt, manuka honey, the radio, my ridiculously amusing cat.

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