Women’s Events May 2013

Sydney Writers Festival finally has the theme of Women and I can’t go. There are talks I’d be going to, if I could. Ruby Wax, Naomi Wolf, Jane Caro, Wendy Harmer, Monica Dux, Anne Summers, Mia Freedman and others talk on a range of interesting topics.  Have a look here:

http://www.swf.org.au/

Digital Parents is putting on a Mother Tongue Show in Sydney at the end of May. Details here.  

http://themothertongue.eventbrite.com.au/#

If you missed the All About Women event at the Opera House, you can watch the videos here:

http://ideas.sydneyoperahouse.com/2013/all-about-women-full-videos/

And, until May 12, 2013, Demeter Press is offering 40 percent off all Demeter Press titles (with the exception of Maternal Theory: Essential Readings [O'Reilly, ed.]), plus five percent tax and free shipping. To take advantage of this offer, please send order to

aoreilly@yorku.ca by May 12, 2013

Catalogue can be viewed here:

http://www.demeterpress.org/DemeterCatalogueSpring2013.pdf

Flyer can be viewed here:

http://www.demeterpress.org/MDSale.pdf

Enjoy!

A Year in Bed

I’ve always been interested in the biographies of creative people. 

I’ve noticed that people who go on to live a creative life have often spent a year in bed as children, with polio or long bouts of illness.

Richard Fidler, host of Conversations on Sydney 702, has made the same observation.   

So what does it do, when you are pulled out of your routine and spend lots of time alone, reading or listening to the radio? It means living in your imagination. Having lots of time to think deeply and explore ideas. For Joni Mitchell it forged in her the determination to live a creative life.

So here’s list of creative people who had serious childhood illnesses: Kate Mulvany, Kate Forsyth,

Tom Jones, Joni Mitchell, Patti Smith, Neil Young, Donald Sutherland, Alan Alda, Frida Kahlo, Francis Ford Copolla.

I don’t know that being sick will make me change my life in any significant way. Perhaps the effect doesn’t apply to adults. Or to adults with internet connection. I don’t expect to suddenly become a circus clown. But I do know that being creative has always been important to me, and that I’ve made more time for creative pursuits in the past than I have since having children. That’s something I can address. Although I expect that being well will mean more of the same (studying, wanting to work, driving children around and running the household) I hope I also make more effort to catch up with friends, and follow creative pursuits.

New York Novels

After the Big Book Purge of 2012 I reordered the books on my shelves. I have a shelf of my favourite books, and a shelf of books to read next.

The books I’ve been taking to hospital with me have included books from both shelves. I’’ve noticed there is a theme to the shelf of favourite books: New York Novels.

The Group, Salinger’s stories, The Bell Jar, Revolutionary Road, Turn Magic Circle, the writings of Dorothy Parker and Mae West.

New York is familiar to me because of the way it is presented in popular culture: Simon and Garfunkel songs, Woody Allen films, Seinfeld, Sex and the City, Mad Men. I’ve bought myself a little map of New York and, as I’m reading, I’m plotting where my characters go.

I’m finding this strangely comforting. And no, I’ve never been to New York.

Getting Ready

My preparation for a month in hospital hasn’t been what I’d planned. I thought I would be doing more exercise. The blister on my leg stayed for two weeks (I called it Stanley - figured it should have a name if it was moving in), and I had a bone marrow biopsy that is still sore a week later. (I passed on the option of having sedation during the bone marrow biopsy. It proved a mistake. It hurt. I took a few deep breaths during the procedure, and yes, the pain passed. In future, I’ll take the sedation.) Also, I need to stay out of the sun (chemo makes me more vulnerable to skin cancer), so the exercise has been limited.

In preparation I’ve been writing my will, and planning the playlist for my wake.

I’m still concerned with the state of the house. We’re having a little party for Matilda before I go in. That’s motivation to clean up the house.

I haven’t packed yet. I’ll be taking juices, ginger beer, plain crisps. A portable DVD player and a tablet. A little clock radio. Some books. Pen and paper, and maybe some drawing pencils.

Although I’ve officially been in remission for a while, I’ve still been tired due to recovering from chemo, and a low hemoglobin count.

I’m going in on 23 April. The first two days I have some tests and protective treatments, and get my line in. Then I have the 25th off. I don’t know what I’ll do yet. I could hang out at the nearby shops, or see a movie. Or come home and clean up and listen to my children - will they being singing or squabbling?. Or I could organise a lunch with friends. I don’t know yet. Then I go back and begin - chemo and radiation therapy. My sister has her stem cells extracted on May 1, and I have the transplant on May 2. Then they just try to keep me alive with drugs and transfusions. My schedule continues until Day 110 after the transplant.

I saw my doctor yesterday and feel more confident about the whole thing. The only way past it is through, and it will be OK. So, now I’m concentrating on what I want to do when I’m well again: horseriding, swimming in the ocean, singing and dancing and hooping, feeling energetic and free. Once I’ve dealt with the worst, I can hope for the best. It helps that so many people are with me.

Pedestrian Safety at School

This is my eighth year as a parent at our school. On joining the school I was concerned about the traffic as we walked to school. The problem of parents breaking the road rules whilst driving around and parking at school has been a long standing problem, even as the school population changes.

Over the years the P&C has discussed many possible strategies to address the problem. We have tried recording the number plates of offending vehicles and sending this information to the local police. With local council we have discussed the possibility of installing traffic calming devices. We have attempted to make the children's crossing at the front of the school a permanent crossing, and asked that the signs be clearer, to no avail. Traffic Officers regularly issue fines to people around the school. Still parents park on the crossings at the front and side of the school, do U turns on the crossings, and double park by the gates at the back of the school.

After two years of discussion with local council we have a new pick up/drop off zone at the back of the school. It is near the corner so you can pick up or drop off your children at the gates on either street from this location. You can park there for five minutes during 8.30 -9.30 am and 2.30 - 3.30 pm, and if you get out of the car,  you need to stay near the vehicle. The same rules apply at the drop off/pick up zone at the front of the school. Many people park for longer than this time, and leave the vehicle to enter to the school. The point of these zones is to keep traffic moving in a safe way. If people aren't using them correctly, then more people park illegally.

The School Executive and P&C have tried to educate parents about road safety around the school. We have explained what the road signs mean. We have explained the fines for breaking the road rules. We have explained the reasons for the rules, for example, that by parking on the crossing you are blocking the visibility of other drivers so they can’t see the pedestrians. We encourage families to walk, ride a bike or scooter to school. We encourage people to organise a Walking Bus. We’ve asked that parents follow the rules in order to set a good example for their children. We’ve asked that parents follow the rules so they aren’t seen by the school community as people who are comfortable with breaking the rules.

We generally walk to school. From Year 5 onwards, my children have wanted to walk to school on their own. From Year 6 onwards my children are allowed to visit their friends in the local area. On starting high school they are confident travelling to and from school on their own. The dangerous part of walking to school is crossing the road directly outside the school because we know that parents break the rules there. But we have survived, because in walking to school on a daily basis my children have learnt road safety skills. They know to catch the driver’s eye before they cross. I hadn’t realised it, but in walking to school on a regular basis, and walking around our neighbourhood, I was teaching my children to become independent and comfortable within their community. Some of their friends who are driven to school every day are not allowed to walk alone to visit their friends, or ride their bike around the neighbourhood with friends, because they haven’t learnt the skills of being out and about in the neighbourhood. Granted, we don’t walk to school every time. Many days I go to school multiple times, but at 9am and 3pm, we try to walk.

Many mornings and afternoons I have spoken to people who have parked illegally, pointing out the dangers of them doing so. Many mornings while walking to school I have called out to people ‘it’s a crossing!’

I wonder what motivates some people to continually break the rules when it is so dangerous for other people. Do they not know, or do they not care? Their own convenience seems to overrule the safety of others. I’d like to ask why people persist in breaking the road rules around the school, but I suspect the reason is that they are running late. They want their children to be safe, but aren’t thinking about other people’s children. For some reason they feel the need to drop their children at the school gate, even though there is no parking by the school gates. The school gates are for pedestrians, not cars. All I can do is ask that they stop. Stop breaking the road rules around the school. If you must drive to school, please leave early enough so that you can park legally. Or park legally and get out of your car and get a late note.

And, when I see people breaking the rules around the school, I wonder what other rules they are breaking. Are they cheating on their taxes? Do they drink and drive? I note them as people I no longer trust. In ethics class we have been talking about how challenges define your character, and how we are known by our behaviour. Sadly, many parents fail this test.

If every family living within a few blocks of the school walked to school there would be far less traffic around the school. It would improve fitness. It means you would have to be organised enough to leave a few minutes earlier. It means your children would learn road safety skills, and become comfortable with more independence as they grow up in the community. And, if more people used the children’s crossing, it could be made a permanent crossing, and be safer for everyone. I know that lots of parents drive on to work after dropping off their children, or on to after school activities after picking them up, but there are many people who could walk to school, at least sometimes, and never do.

I do have other ideas. Perhaps we could paint outlines of children on the road. Or arrange tax audits for people who break the road rules. Or ask that the road bordering the three sides of the school become a No Stopping zone, because it is obvious that parents are constantly abusing the privilege of parking near the school. Or we could employ bouncers to man the gates, only admitting people who arrive at school following the rules. Of course, these won't happen, and it isn't up to me to solve the problem. Most days I wonder what it would take for people to obey the road rules. I know some schools do name and shame, but I suspect this would just provoke confrontations with the Principal, who has already been sworn at for asking parents to park safely. Sadly, I suspect that only the serious injury of a student will make people reconsider their behaviour.

While a team of health professionals are trying to keep me alive, I’ll be counting on the school community to keep my children alive. And if my team fails, I ask that, for two weeks of school term, in my honour, the sign at the front of the school read: ‘It’s a Crossing!' I'm telling you now, if my child is killed while I'm in hospital, I'll be very angry. 

If you have an ideas to help solve the problem, I'd like to hear them.

If you are missing Mampalooza Sydney, there’s this!

So, you might have guessed, my friend and I are not putting together a Mamapalooza festival this year, celebrating mothers in the creative and performing arts. Hopefully we can host one next year.

However, there are some other events you might like to attend.

All About Women at the Opera House. A day of discussions, on Sunday 7 April. Looks good.

http://allaboutwomen.sydneyoperahouse.com/

Amity Dry's musical about motherhhhod at the Seymour Centre, running 23 May to 1 June.

http://www.seymourcentre.com/events/event/mother-wife-and-the-complicated-life-the-musical/

And, based on a stage musical, there’s Goddess at the cinema. I saw this, and it’s good. The characters are likeable and the songs are good, and I’m happy to support an Australian musical. (There are a few dodgy ideas though - that a woman has to take off her clothes to have a career; that you should stay close to home to keep your partner true to you; and why do women need a ‘women’s’ laptop?) 

If you'd rather stay at home, Q&A is having an all female panel on Monday night. Brooke Magnanti, Germaine Greer, Mia Freedman, Deborah Cheetham and Janet Albrechtsen. Click here if you have a question for the panellists to discuss.

http://www.abc.net.au/tv/qanda/

Enjoy.

And if you go to the Opera House event, or the musical, let me know how it was.

Why do men think it is OK to wear images of naked women on their t shirts?

Why do men think it is OK to wear images of naked women on their t shirts?

I had a discussion with my nephew about this on Easter Sunday. He said the photograph on his t shirt was art. (It was an image of the naked Marilyn, with the red cross over it; from the photo proofs - she didn’t want that photo printed. She certainly never authorised the photo to be printed on a t shirt.) I said it breached community standards. The image wouldn’t be acceptable on a billboard, or during family tv viewing times. He said I could choose to not look. I said I’d have to look to know I didn’t want to look, but then I’ve already seen. I said it isn’t treating women as whole people. It’s objectifying. It isn’t respectful. He said I see everything in terms of feminism. We agreed to disagree.

What I didn’t say was that, in context of the more violent images I’ve seen on men’s t shirts, the red cross could be blood. The image could be seen as more mean and violent than he thought.  

Images such as those on men’s t shirts would not be acceptable in the workplace, and I’ve worked in places where men thought they were. Were they trying to intimidate the women who visited their workspace? I don’t know, but as a young woman, I know I was very uncomfortable, vulnerable, and aware that I wasn’t being taken seriously in my work when I entered their workspace. I can’t remember what I did, but I hope I complained. I know I have spoken out against sexism in other workplaces (one place the manager told a joke about rape to lift our spirits).

Here are some articles that have crossed my path since the Easter conversation. They support my argument.

UK teachers say raunch culture has set feminism back 40 years, and they want to teach students to address inequality and sexism.

http://www.independent.co.uk/news/uk/home-news/teachers-condemn-raunch-culture-for-fuelling-sexism-under-the-guise-of-irony-and-empowerment-8555994.html

Melinda Tankard Reist with statistics on the effects pornification of our society has on on girls. I’m interested in how pornification also affects boys and boy’s behaviour.

http://melindatankardreist.com/2013/04/sexualisation-of-girls-are-we-carrying-on-about-nothing-mtr-on-weekend-sunrise/

Tara Moss on political representation and women in the news (saying nothing about the lack of women on boards, and my own friends talking about women being sacked in engineering and the lack of career path in science).

http://www.smh.com.au/comment/women-still-outnumbered-where-it-counts-20130330-2h03c.html

I wanted to say the objectification of women in our culture encourages young men to treat women as the footballers at Steubenville treated the young woman they were found guilty of raping, recording the rape and their callous disregard of her, and uploading images of her as if it was not just OK, but fun. Objectifying women contributes to a rape culture. I didn't say that, because I didn't want to raise the details of the Steubenville case around my children.

I didn’t say that if you want to wear an image of Marilyn, how about the photo of her reading Ulysses.

Easter Break 2013

I just heard on the radio about a group in London called Sunday Assembly. They have formed a non-denominational, deconsecrated church, meeting each month for singing songs, listening to readings and a guest speaker, and quiet reflection/meditation. Their tenets are: Help Often, Live Better, Wonder More. They meet to provide the kind of rituals and community and benefits of being part of a church, without the religion. I’ve often thought this is something I’d like to be involved in. We could start one in Sydney. Or, if we don’t agree with all the requirements of a branch (giving 10% of donations to Head Office) we could start our own version and call it something else. More information here.

http://sundayassembly.com/

If Sunday Assemblies are established in Australia, perhaps they can qualify for the DGR (deductible gift recipient) status, then merge with Primary Ethics, and the teaching of ethics classes in NSW primary schools will be financially supported. I know it has been reported in the press that the classes are at risk. I find that hard to believe considering how much work has been done on so little money. The volunteers are many. The two people who work in the office are overwhelmed, dealing with internal processes, after having established the whole system,  and thinking about external issues as well. They must be exhausted. The issue now is sustainability. We need to employ more people to run the organisation. For me, the matter of providing ethics classes to primary school students is one of discrimination. It isn’t OK to say any group of students is to be given no instruction during a portion of the school day. This is the policy that applies to students in non-scripture.  If you want to help, click here.

http://parents4ethics.org/primary-ethics-need-dgr-status/

Meanwhile, I’m looking through Jesus for the Non-Religious, by John Shelby Spong., learning about how Easter is based on Jewish celebrations. (I know there are pagan basises too.) Very interesting.

Also, I’m trying to stay out of hospital. I spent Christmas eve and morning in hospital and I don’t want to be in there for Easter Sunday. My blood counts are OK. The problem is I have an insect bite on my leg, and it has come up in a big, nasty looking sore. I need to keep an eye on it. If it gets worse I need to go to hospital. Antihistamines are doing nothing for it. I haven’t been bitten by mosquitoes or anything since I was diagnosed (they don’t want my blood), and I didn’t see what bit me - it could have been a white tailed spider. I just woke up the other day with the bite. So, I’m looking for a medical centre that is open over the holidays so I can start on antibiotics.

It looks like my hair going to skip being salt and pepper and just be salt. I’m letting you know so you won’t be shocked when you see me with white hair.

I’m hoping for a relaxing long weekend, just pottering about at home, and hope you are enjoying the break too.

Raising Girls - a review

Reading the reviews for Steve Biddulph’s Raising Girls, I thought his only contribution to the issue was the suggestion of raising an “Aunty Army’. I’ve just read the book myself, and found those reviews to be unfair. I thought he was quite late to the cause, and wondered what contribution he could add. (Sue  Palmer published her book Toxic Childhood in 2006. In 2011 the UK government published a report after an independent review into the commercialisation and sexualisation of childhood, including recommendations.) As it is, he adds something worthwhile.

Biddulph take the reader through the needs of each of five stages of development.

He recommends avoiding:

* educational products and services for babies

* products and services made and marketed to girls (ie, gendered toys and clothes)

* performance or competition for the under - fours

* tvs in bedrooms, or tvs being on all the time

* girls’ magazines (I’d say the exceptions are New Moon Girls and Indigo4girls)

* diets and fat-shaming

* reliance on pills (medicating every headache)

* saying ‘I need a drink’

* giving alcohol to children

* allowing your children an unsupervised online presence

* rewarding exhibitionism online

* tiredness - get children to bed on time (teenagers need 9.25 hours of sleep a night).

He emphasises the importance of role modelling, open communication, offering a wide range of activities, and simply being together. I like that he calls on the current experts in related fields to support his arguments, and that he presents his case in the context of feminist history.

These aren’t new ideas, but here’s why the book is worthwhile. It is likely to reach a new audience who haven’t thought about all these things before. It is written by man, so men are likely to read it. It is written by a psychologist who has a respected public profile so it should reach a wide audience. And the format is simple and easy to read, so it will be read by people who don‘t read denser or more academic works. Win.

For some families there are changes to be made if they accept his advice. For me, I like to take things a little further. I think it is important to talk back to the culture we raise our kids in. To lobby, to write letters, to speak out against sexism and misogyny, to sign petitions, to join groups that are active for change, to challenge people’s beliefs and values. Don’t we want a society where people of any gender are free to be whoever they want to be, rather than try to fit into the narrow gendered stereotypes our culture presents?

Anxiety Dreams

I’m recovering at home after Round Three of chemo, and everything went smoothly. Transfusion. Lots of anti-nausea drugs. No temperature. Now I just need to stay out of hospital for the next week, and I’m good for a month or so before the transplant. Actually, I’ve been told to fatten up beforehand. That could be fun!

I had a quiet time in hospital. I was in a room with friendly older women and it was nice. Of course, being in hospital means lots of time and nothing to do. Doze and dream. I had a few anxiety dreams.

I had a dream about driving, and needing to stop but being unable to. The kids were in the back. It wasn’t far from my usual anxiety about driving on motorways.

I dreamt I was behind at university, and couldn’t complete my course in time. I’ve taken leave, so I‘m OK, but I recognised it as a haven’t-prepared-for-the exam dream. When I got home I also saw it as a clue to how many forms had accumulated for me to deal with. The paperwork of running a household and having kids at school.

I had a dream about being chased by fire, then overtaken.

It doesn't take a psychoanalyst to work out I’m processing dealing with my sickness.

And something happened on the ward. A fellow patient, in another room, was dying. I recognised her visitors from when we had shared a room. They were crying. People were making phone calls in the corridor. People were arriving at night and staying late. A nurse was whispering to another patient. When I would usually go to lounge, I didn’t, because I figured the visitors would need some space.  I had wondered how death was managed on the ward. I still don’t really know. All I know is there are still lots of patients who need care, no matter what else is going on.

I wasn’t impressed this week that Kim Kardashian tweeted about having a Vampire Facial, ie, having her own blood injected into her face. The woman should spend some time on the Haematology Ward. I’ve had enough needles and been around enough blood products to think anyone who would volunteer for these things is foolish. I’d like to take a break. I’ve had enough. There are days I look at my arms and could cry.

Anyway, once again I realise that my situation isn’t as bad as some others. My case is fairly simple and low risk. I don’t have the complications that others have. I am very lucky to live near a major hospital. If I keep going as I am I should be fine. 

The transplant is scheduled for 1 May 2013.

Shave for a Cause

My partner is going to shave his head to raise money for The Leukaemia Foundation. Click here if you want to sponsor him.

my.leukaemiafoundation.org.au/andymuir

Lets Talk About Death

No-one wants to talk to me about the possibility that the transplant could kill me.

If I mention it in conversation everyone deflects: you’ll be OK, don’t worry about that, you’re strong, you’re a fighter, but the truth is I could die this year due to the transplant. I know that the idea is confronting, and that people generally don’t deal with death very well in our culture, but the reality is whether I live or die has nothing to do with my character. It would simply be bad luck. A bit like getting leukaemia is bad luck.

And I have to think about it.

I find it interesting that I’m not panicking. I don’t suddenly want to write a novel, or fly off to Paris or write letters to my children. And I wonder why. The one person, a friend, who did have a conversation with me about it, said it is because I’ve lived an authentic life. I’ve done what I’ve wanted to do, and don’t regret the way I’ve lived. That’s true. I do have a few regrets, but they are small. I regret not helping other people more in certain situations. I regret spending a few years hanging around with people who weren’t really good friends to me - it was a stage when we were young and the truth is that they none of us were taking care of ourselves, let alone each other, so I can’t take that personally. I haven’t spent my life in a job that I’ve hated. I’ve done pretty much whatever I’ve wanted. I’ve studied literature, acting, singing. I’ve done dancing, art, writing, songwriting. I’ve left jobs when I’ve felt stuck. I’ve spoken out publicly about issues that I care about.

If I die, I believe I’ll just cease to exist, and I’ll have nothing to worry about. I’m not scared about it. But it would be sad for my family.

As for the children, I just trust that I’ve done a good job with them so far (they regularly do things that make me proud of them), and, if I die, they’ll remember me, and they’ll trust the network of family and friends we have around us, and they’ll be fine. Although I would like more time with them, I’ve spent almost every night of their lives talking to them around the dinner table, and I think they know me well, they know  my views, and what I want for them. I’ll just have to stand on my past actions as an example of how I want them to live.

We’re all going to die. We all will be remembered according to how we lived. That‘s just the way it is. 

Thinking about death isn’t so scary afterall.

Not the week to practise juggling knives

I’ve been back in hospital this week. I had an appointment with my doctor, who sent me for a platelet transfusion. (Platelets make your blood clot.) I came home, and straight away had the shivers and shakes, then a temperature of 39. So back to hospital I went. Five hours in emergency later, I  was back home on the ward, where I stayed for two nights on IV antibiotics. Before my transfusion my platelet count was 8. After being admitted my platelet count was 7. Normal range is 150-400. When I left hospital my platelet count was 29. Still critically low. When I was admitted my wcc was low. When I was discharged it was critically high at 43. Normal range is 4-11. So, in short, my bloods are crazy. My wcc was high because I don’t take my Leukaemia medication when I’m in hospital. Sometimes I’m glad to take a break from it, but obviously, I can take a break for too long. When I started back on it after chemo this time, I had a severe pain in my neck and shoulders, like whiplash. I couldn’t turn my head. I couldn’t sit or stand without pain. I spent a few days just lying down, and crying when I tried to sit up to eat. I’m very relieved that hasn’t happened when restarting it again this week - I’m taking a lower dose.

And here’s why I’m relieved. Because I need to clean my house. The contrast between being in hospital and being home is too stark. I can’t come home from chemo, or from the transplant, to such a mess. So, that’s the plan for this week. Catch up on all the forms and payments that are the start of the year business, and clean up the house. I’d be embarrassed to die and leave the house like this. I have a week or so to fix it before going back in.

Ding! Ding! End of Round Two!

And no, I won't be extending the ‘fight against cancer’ metaphor.

I do feel much better than I did at the end of Round One, although some other things happened. But I haven’t come home with that haunted chemo look in my eyes ( I hope).

I was in hospital for eight days and feeling like I could just live there indefinitely, which I will be doing in a few months. I’ve learned you can spend all day doing nothing and the time will pass. I can measure out my life in coffee spoons, or my temperature, or latest blood tests. The chemo part went well. I found a doctor who is good at lumbar punctures, and I’ll be asking for him each time. I had a temperature, which meant staying longer, on IV antibiotics. I believe the source of the infection was developing cellulitis at the cannula site. Um, when I tell the doctor or nurse that something isn’t right, I mean it. The next cannula on my other arm became blocked on its second day. It’s a bit strange having fluids dripped into you you that just leak out. Fortunately this all happened after the chemo (no-one wants leaking chemo) and after a blood transfusion (my haemoglobin was too low) and fluids (my blood pressure was too low). Oh, and I met an intern who liked to stick needles into very small veins, and missed each time; my hands, wrists and arms aren’t pretty. I suggest she’d make a good GP but won’t have a career in Haematology. But  I’m fine now. Just have to avoid getting an infection. I’m likely to need a platelets transfusion next week, but we’ll see.

For the first few days I was in my own room. Lovely and peaceful. I could hear 2CH playing from the room next door. It was a comfort. The playlist has barely changed since I was a child. I might bring in my own radio and play 2CH when I have my transplant. And I read Salinger. ‘Raise High the Roof Beams, Carpenters’ which I like very much. (The title is a quote from Sappho.) The other story it is published with, ‘Seymour: an Introduction’ is less successful. Salinger starting to slide down his own crack. I’ve said it before and I’ll say it again, I like the Glass family stories. Seems such a complete world. But I don’t like Salinger as Buddy writing about writing the stories. When, oh when, will the posthumous works be published?? I’m waiting.

I also read Julian Barnes ‘The Sense of an Ending’ which I enjoyed. I wouldn’t consider it a ‘masterpiece’, and I suspect it won the Man Booker Prize because of its brevity. If the judges were seriously shocked by the ending, and impressed by the subtle plotting, they need a slap. I took it as an example of dramatic irony; the reader knows more than the narrator, and there’s the pleasure. It would be a good book for bookgroups to discuss. Linear and brief.

Then I moved to a shared ward where patients had their text message alerts set to horses and ducks. I met a patient who had a transplant last year, and she gave me some tips. Her white blood count had plummeted after a year of recovering well, and she needs a liver transplant. Her condition is more complicated than mine. She hates the procedures and tends to scream during biopsies. I go for the relax and breathe approach. I also met a young woman who became engaged two weeks ago, and last week was diagnosed with aggressive leukaemia. She wasn’t undergoing treatment. She was waiting to talk to the specialist about treatment. And then she went home. It turns out the outcome would be about the same with or without treatment. So now she’s talking about quality of life. She’s a lovely young woman. Religious. Works in a religious institution. Her family are lovely and must be very proud of her. What has happened to her is totally devastating and undeserved. It shows how life can change in a moment, especially when you body does things without your consent.

It is a very strange land the Magic Faraway Tree has delivered me to, and I’ll be back there before the month is out.

Ready for Round Two

Next week I’m going back in for the next round of chemo. For me, it is Part B of Hyper CVAD, which my doctor tells me is more intense. I’m not sure if that means I‘ll feel sicker. It means my bloods will plummet more dramatically and there will be a greater chance of needing transfusions. I’m planning to be out of action for about three weeks. At the moment, though, I feel quite well. I’m surprised by how well I feel. I saw my doctor yesterday and said I think we can stop the treatment now. How we laughed! Anyway, I need to remember about recovery when I’m feeling sick. And need to just keep breathing while going through the worst of it (which might be the lumbar puncture and chemo being shot into my spinal fluid).  

I’ve lost my hair. It happened quite quickly when it happened. I tried to hide my head from the children - it made me look sick. I got my head shaved at the hairdressers’ and was glad to be rid of the dead, patchy mess. My children don’t like seeing me bald. It reminds them of the film of Roald Dahl’s The Witches. I’ve discovered I need to wear strong colours on my head, otherwise I look unpunctuated. I’ve been given some scarves, and I’ll buy some more head coverings from an online store. It is quite cold in hospital and I’ll be needing to cover my head to sleep. And I’ll be trying to keep my eyebrows neat.

I’ve been getting prepared for the year to run without me. The children are being more independent, and are doing their chores at home, and being more organised. It will be more challenging as all the extra-curricular activities begin. They’ll just have to work everything out. And so will their dad. Now that the structures are mostly in place, I’m talking to them about what to do when things go wrong, as they inevitably will. Who to talk to, what not to do. Second tier structures.

I know I’ve been saying that I’m having a bone marrow transplant, but actually I’m having an allogeneic hematopoietic stem cell transplant. My donor sister will have her stem cells harvested from her blood. There is no digging into her bone marrow. She needs to take G-CSF injections for the few days prior, to make her blood cells come out of her bone marrow, then they take her blood, do the whirlyjig magic to extract her stem cells, and give her back her blood. It isn’t very intrusive for her. Me? Ah. I asked my doctor what are the chances of me dying this year, due to the procedure. She said my chances of dying are probably less than 10%. The transplant doctor, who I will meet in about a fortnight, might revise that figure. Hopefully revise it downwards. If I went into a raffle thinking I had a 10% chance of winning, I would consider that good odds. And afterwards I have about a 30% chance of having chronic graft-versus-host disease. I need to remember that people can die from lots of causes at any time, and that the consequences of me not having the procedure are more life threatening. My doctor calls my disease sinister. CML tends to turn into explosive ALL and that is what we are trying to avoid. The transplant is my best chance. So, on we go.

How not to be annoying in hospital

I’m out from a further four nights in hospital. I didn’t react well to chemo - trouble keeping food down, rash, numb fingertips (which makes typing a little tricky), and then a temp which means a stay in hospital on IV antibiotics. It’s interesting to me how people relate to their conditions and find new (or old) identities as patients. We choose what kind of patient to be. I’m trying to be quiet, and polite, and duck off to the Patient Lounge when I can.

Here are my handy tips on how not be be annoying in hospital.

* Maybe turn off the tv when visiting hours (9am - 8pm) are over. Only turning the tv off between midnight and 5.30am isn’t very restful.
* Ask people not to call outside visiting hours. The phone ringing at 10.30 pm is not cool.
* Mornings are busy with hospital business. Patients need to nap in the afternoon. It would be thoughtful to not fill the afternoon with visits from extended family, work colleagues and friends all afternoon.
* If you need to use the bed pan when you move your bowels, have the air freshener handy, or ask the nurse to use it.
* Know where you are. The Haematology Ward isn’t the Oncology Ward.
* Don’t leave smelly food uncovered.
* Don’t complain about the tiny ting sound of a text message received by the quietest patient.
* If you vomit every hour, sounding like a drowning roar, perhaps try eating sitting up, accepting advice and medication.

And now why it is important. There are seriously ill people in the ward. There are people who will not survive their disease. There are people who are separated from their families, who don’t speak English, who stay in boarding houses between treatments. This last bout in hospital made me very grateful to have Leukaemia rather than Multiple Myeloma.

Now that I’m out and feeling better (the simple pleasure of a boiled egg, a cheese toastie), we’re doing our back to school preparations. For me that means setting up structures so the family can function without me. Asking people to help out so that children can attend dance class and music lessons. Making sure their dad can take them to weekend appointments - he'll be functioning like a single parent. I’ve just put handfuls of hair in the bin. I’m planning to get the back to school shoe shopping and some other chores done before I shave my head.

And once again, I have to say, my village has been fabulous. Other families have taken my children while I’ve been unwell, have fed them, entertained them, have kept them safe and happy. I really don’t know what I’d do if I wasn’t part of such a supportive community. Thank you so much. I’m hoping that next summer I can return the favours.