In Person
Monday, March 29, 2004
The Dales were wonderful, a different colour to their Wintry look, with the rivers all bubbly and the lambs leaping in the fields. I finished a story about a very large girl called Gloria working in a call centre in Newcastle, and wrote a whole new bundle of poems. And I grappled with the voice of the novel and fastened down its hatches, and set it on a new course, and I think it's shipshape now.
Coming back from a week of quiet isolation was hard. Retreating is addictive and I feel sorry for my family having to put up with my irritability after such weeks. I want everything to be in my control, and to have that same level of compete peacefulness you can get in the middle of nowhere. Domestic family life is very tricky, with all the doors opening and closing, the kettles boiling, dogs barking, and so many tasks, piling up, one after another...like, feed the dog, water the plants, hang out the washing, eat lunch. It's exhausting !
When I got back I had volunteered to speak at a day assembly here in Newcastle of gay and lesbian and bisexual people telling the council what we wanted for the city. Why did I volunteer to do such a thing? At ten thirty on Saturday morning I was faced with a lectern and a sea of expectant faces. Being in a manifesto mood at the moment I was able to list a whole load of things I wanted for the city, like lesbian happy hours, lesbian and gay old people's homes, monuments, banners over the Tyne welcoming us to Newcastle (sewn by the town leaders). Maybe one of the good things about my dodgy health is the worse the news is, the more outspoken I am able to be.
And the news is fairly bad. I just spent the morning seeing my Doctor, having more x rays, blood tests etc. We looked gloomily at scans of my insides, which are full of shadows. There is the spread in my liver, extensive bone cancer, some dodgy bits in my pleural cavities, and something odd about a kidney.
But, I don't feel that bad. I feel the same as I did yesterday. Also, the cancer in my bones is non- threatening as it manifests as hard little patches, rather than holes, (which would mean breakages etc.) The pictures were actually rather beautiful. The Doctor says he wants to give me Vinorelbine.....a kind of not too toxic chemotherapy. He's afraid that if he leaves it much longer I may turn yellow and then it will be too late.
Yet, the more I think about it, you could look at these results in a number of ways...you could say...'Isn't it amazing, Julia, that you look and feel so well?' and 'These results show some slight changes, but nothing too terrible, a bit of treatment will help to stabilise things.We've got so much choice these days....and these are BRILLIANT drugs.' Or even 'You have done extremely well, and we look forward to helping you have a very dignified and happy death!' I would be happy with any of these statements.
My other approach is to try and forget all about it, to pretend I haven't got cancer, and go and live in pretendy land. This works very well on the whole.
For now there is still chocolate to be eaten, books to be written and mad arrangements to fulfil, and daffodils everywhere. What wierd flowers they are, like they were made in a plastic's factory by aliens.Posted by julia @ 12:49 PM GMT
Friday, March 19, 2004
This wind is making me dizzy, everything rolling about and clattering! I have just had a CT scan at the hospital. It was very painless, and we had no trouble with needles this time. The only bit I don't like is when you can see the experts studying one's insides through the glass partition, and it always seems to me that they are shaking their heads!
Still, I feel that the tamoxifen, the acupuncture, the milkthistle, and your good thoughts are working. I feel somehow stronger and better, and the sense of fear and dread I had a few weeks ago has really evaporated. I went to London this week, travelling First Class as I wanted to try and make the journey really relaxing and easy. I have never bought a first class ticket before and it felt sort of wicked and delicious. However, there was a bomb scare at Stevenage, and we all had to pile off the train and stand shivering on the platform. They were going to put us buses, but suddenly changed their minds and put us back on the train. Because of the chaos, everyone sat they wanted, so First Class was completely packed and not at all luxurious. This should have made me really grumpy, but there was something so jolly about it all, with all the British people being nice and enduring in the face of difficulty, that I ended up rather enjoying myself. On the way back the train was terribly delayed again, and I found myself talking to businessmen about their lives. By the time I got home I was oddly rejuvenated! I am going to put the piece about The Great British Public that was on the radio onto the site, as several people have asked for a copy.
[I've added it - just follow the link above - Roger (Julia's webmaster)]
Lately I have been very focussed on what I want I am going to do with my time. Sadly, I am giving up a number of things that I found fascinating, but exhausting. One of these is the play I was writing based on the Thousand Family Study, as it felt like so much work, and I feel it's better to hand it on to other writers. I am left with the novel, poetry and some short fiction...in other words, the world of my imagination. Happily, because of the Northern Rock Money, I am able to survive without doing anything else. Suddenly time is not hemmed in and prescribed, and this is very liberating. I feel like writing in the middle of the night. Or sleeping all morning, then working all afternoon. But I am sorry about the people I won't be working with, as I love the social side of theatre.
I have just bought some provisions for the week away...blueberries, raspberries, chocolate and custard!
Also porridge and bath stuff!Posted by julia @ 12:37 PM GMT
Tuesday, March 16, 2004
I have just come back from listening to the poet and novelist Anne Michaels read. It was very restful and pure as a reading. The audience sat quietly listening, not clapping between poems. Anne read in a soft, but perfectly audible voice. Sometimes poetry readings are a bit like Quaker meetings, like ministries. Poetry has never been a good seller, but it seems to me that dressing it up as something else doesn't help much either. There were lots of people there, not coughing, not wriggling, just listening. The poems were very good, and everyone knew they were.
Otherwise, things have been quite uneventful on the health front. It's like that with cancer...ages when nothing happens, then suddenly everyone is rushing you about sticking pins in you and asking you your date of birth and next of kin. It's rather like publishing I suppose! I do feel rather tired, and I wonder if this is because I know I am supposed to be ill. I long to lie about in ordered, gentle rooms, but as I live with teenagers this is difficult.
I keep prodding my liver, trying to work out what is going on, but it feels the same as it always did.Next week I am going away to a cottage in Yorkshire to work on the novel again. I long to get into that daily rhythm again. It's rotten for children who have writer mothers, as they are always trying to disappear into made up worlds. Still, my youngest daughter was eighteen yesterday, so I can now say my children have both reached adulthood!
Otherwise, I have been writing manifestos about Newcastle, and imaginary repercussions of the manifesto. For example, how would our lives be changed if we all napped every afternoon? These and other works inspired by the Barcelona trip will be read at the Playhouse in Newcastle on April 30th.
Posted by julia @ 09:44 PM GMT
Wednesday, March 10, 2004
Yesterday I went for a bone scan. I am very familiar with some parts of the hospital, but often quite dismayed when I have to go somewhere as a stranger. I've had bone scans before. They are long and droning and the department is a bit brown and boring. You have to have an injection two hours before the actual scan. A rather bluff, dull eyed doctor told me to roll up my sleeves, and I said that most of my veins were hardened and didn't work. He didn't listen, and poked with the needle at main veins making me jump, and failing to draw blood. I don't know why, but when this happens it always makes me want to cry. Generally, I am quite stoical, but it was so horrid, him telling me to keep still while he made a mess of my arm, and sighing when I yelped. Then he suddenly turned away and left the room, without saying sorry or goodbye. A smiling nurse suggested I soaked my arms in hot water. Then an older, strict looking women in a white coat strutted in, obviously sent by the first man. She zoomed in with a new needle. Then, the nurse said, as if I was a dog at the vets 'This one's a bit of a jumper!' and the older woman tutted and carried on with the injection. She didn't say a word to me. It was ridiculous to get upset by this small, everyday NHS scene, but I found it absolutely humiliating. I find I keep writing letters of complaint in my head.
Today, I had a very different experience. My partner and I drove up to Edinburgh to Maggie's Centre. My friend Jackie Kay had told me about these places set up by a woman who had died of breast cancer. They are basically information and support centres for people with cancer, where you can talk about what's happening, and get help with things like treatment choices, nutrition, relaxation. Of course I knew about places like the Bristol Centre, but that had always struck me as being rather Laura Ashley and therapy based. I really wanted to talk to someone about the drugs I've been offered. Anyway, it was a lovely, calm house built of wood in hospital grounds, but completely unlike a hospital. It had gardens, and plants, and smelt of cooking cakes, and an atmosphere of quiet easiness. But it wasn't do-goody either. We saw a very handsome cancer specialist called Andrew who sat with us as if he had all the time in the world. We talked about my options, and our whole discussion was completely led by my pre-occupations. He certainly made me feel much more hopeful. Andrew felt that I was being offered the right things, and that there was a good chance that the tamoxifen might work for a bit. He agreed that Taxol was my best bet if I have more chemotherapy. We got a clearer picture of the whole illness, and I realised that it's not inevitable that I go downhill from here. I could easily stabilise again for a good amount of time. I felt really replenished. Actually, for the first half hour I was quite weepy as everyone was so nice, but it was the kind of place where you could weep and not feel embarrassed.
Anyway, I will return there soon, and I can phone up and talk to them any time. I feel as if I have a new ally and confidante.
Afterward we met our friend the actor Monica Gibb for lunch. Monica was in the first play I wrote about cancer called Eating The Elephant, years ago.Otherwise, I've been doing a review for Mslexia Magazine about three books on writing by writers. Although I'm not a huge Atwood fan, I do think her book NEGOTIATING WITH THE DEAD is a fantastic collection of essays about what it means to be a writer. She's witty and elegant and perceptive, and puts her finger on so many truths about writing. Also, I have just consumed Zoe Heller's NOTES ON A SCANDAL. THis is a brilliant, gripping, almost perfect novel. Her writing is so lucid and accurate it makes me gasp.
Last night the teenagers were sitting out in the garden, on the new sycamore benches playing drums. The sound echoed all over the vale. It was lovely. The garden is filling up with growing things, frogs, new paths, newly made spaces. There's an awful lot left to do!
And the novel. It's time to climb back into that other, made up world.Posted by julia @ 11:07 PM GMT
Friday, March 5, 2004
I am having a recently felled sycamore tree in the garden made into benches. You should see the new wood. It is moist, banana white, delicious and I feel like eating it. Since the latest session with the doctors I feel more and more concerned with getting the garden organised for the summer. I have always wanted a swingy sofa that creaked slightly. I've written before about wanting a sculpture of a lovely big woman, and I've got various plans for that. I am going to make a wild flower meadow, and yesterday a parcel of dusty, grassy seeds arrived. It's a very long steep garden, and when you are sitting in it, it's like being in an echoing and magical valley. It's a big green dip in the city, a 'nature corridor' and I like to think that it's full of beasts, of badgers, foxes, hedgehogs and worse.
On the cancer front I have been thinking about these drugs I am being offered...it's not really a CHOICE because one has no idea what any of the drugs might do, and no one medical will make any claims at this point. I feel like offering to rewrite the information sheets they give out at the hospital, because not one of them says anything good about any of the treatments. There is an awful lack of HOPE about all of it. I mean, I know they must be careful what they say, but there must be something good about these treatments. Which would you go for?
1. V (Vinorelbine) gives you nosebleeds, anaemia, constipation, tingling in extremities, fatigue. Given as a drip. Got no idea how well it works.
2. C (Capecitabine) nausea, diahorrea, dry hands and feet, fatigue. No idea of its track record either. You can take this in pill form.
3. T (Taxol) Joint ache, fatigue, nausea, hair loss. I have more of a relationship with this drug, as I took its sister drug taxotere before and it had very good results, so I feel more positive towards it, even though on paper the side effects are just as bad. It comes from yew trees. You take it once a week for 3 months as a drip.
4. Acupuncture. Although I would do this anyway, maybe it's time to turn my back on chemotherapy and just have acupuncture, which I completely believe in....and all the other things.....faith healing, nice food, juice, massage etc etc
5. Just keep taking the tamoxifen, which I have just been put back on, and hope it works.
How do I decide? I have a month of scans and stuff before making a decision.
The other thing to consider is that it's not as if I am in pain. I haven't really got any symptoms apart from tiredness. I can see that pain would drive one to chemotherapy.
This decision is all about quality of life and all that stuff. My geatest fear is the long groggy fading away, but I also realise that death isn't nice really, or at least it's a bit like birth and can go any number of ways. I feel that I must be firm with my doctors and make them talk about death in a hopeful way. These medical conversations are full of silent chasms that are so hard to climb out of. Is it because of fear of suing?
Other conversations are so much more uplifting. Doris, my healer, said that THEY don't want me yet. She said that it would be fine when they did, but I had a while to go. I agree with her!Today I am running a writing workshop with people who work in primary care. I am looking forward to it. People have such interesting lives, although they often don't realise it! On Sunday I'm doing another workshop about mothers and daughters. This is a dangerous subject...explosive! I have been thinking of ways of treading carefully, like tiptoeing across a minefield, so that we can write without too much pain. At the end the library at Bishop Auckland is providing us with Sunday tea ! Let's hope there are tissues too.
Posted by julia @ 09:25 AM GMT
Monday, March 1, 2004
Life is suffering, but not all the time. I spent the weekend at the MalMaison Hotel in Clerkenwell with my mum, ordering sandwiches and tea from room service. I ate mussels and three different types of chocolate ice cream. We watched a Woody Allen film in bed, had many baths, and did the crossword. We had aromatherapy treatments and smelt like pot pourri.
At one point we went out. It was quite cold on Saturday, but not as cold as Newcastle. We went to St Bartholemew's Church, then Carluccios at Smithfield, where the hot chocolate is thick and the bread extremely fresh and the waiters smile alot. Then , in a sudden burst of zealous energy, we tramped down to Aldgate to see the new women's library in a place called The Wash House. I think we were expecting sofas and welcoming arms. Actually the library is a rather sombre, intellectual affair made of red brick. My mum and I got told off several times...for not putting our bags in a locker, for wanting things that we were not allowed to have, for generally being noisy and chaotic. Finally we got into the hushed 'reading room,' and realised that there was nothing, at this point, we really needed to know about the history of womankind, although I was very impressed by the archive of women's magazines. After this we wandered around Brick Lane, remembering my great aunt, Edith Ramsay, who had been immersed in the Jewish community in those streets. She loved the buildings and their histories.
Anyway, you can imagine that after this we were quite beside ourselves and very cold. This is, infact, my main symptom...a kind of awful exhaustion, cold bones, and sense of inner 'crashing.' Yet, I imagine many people who don't have cancer feel like this. Also my situation is very like being old, when things start decaying and declining, and you know that you haven't got long. The only difference between me and an old person is that I am still quite young! (what a profound statement THAT is!) Also all my friends are mostly alive, so there are plenty of people to come to my funeral. It must be rotten when you live longer than anyone else.
On Sunday I met my oldest friend and we talked about life and death in the British Library. There is the most fantastic collection of woodcuts there, if anyone is passing by. Anyway, in the end we decided that 1. Everone is alone 2. Life is suffering 3. You might as well be happy.
On the way back on the train the light was pink and gold. I talked to a lost South African girl from Johannesburg. She wasn't really prepared for a Northern February, and as the landscape became more and more icy and bare she looked increasingly dubious. Then the train didn't even stop at Durham, where she wanted to get out, and the Glaswegian guards were all jolly and kind, but she didn't understand a word they said. Where is she now in her t.shirt and jeans?
There are no more complaints from the liver department though, but thanks very much for thoughts and emails. It's such a wonderful antidote to the loneliness of illness, this weblog. I recommend it. The next thing medically will be loads of scans...but I shan't think about them yet.Posted by julia @ 06:18 PM GMT
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