Engraftment

Good news. I'm engrafting,

My neutrophils are 0.5. My whitecell count is 0.6.

In order to go home I need to stop having temperatures and for my  blood counts to be normal. Five to ten days, the doctors say.

I've been in hospital for three weeks now.

I think I've been a cooperative and self-contained patient. Actually, it has been quite nice to not have to make any decisions.

I've had all the expected side effects. Mucasitis which means mouth ulcers and a sore throat and blood blisters on my tongue. I was taking morphine for the pain. I've had diarrhea,  a rash and daily temperatures.

My hair is growing back. A soft grey fur.  My eyebrows came back quite quickly.   But now My hair is falling out again from the chemo I've had this time. But I've had my last chemo today.

I've been embracing boredom. I have my little routines and zones. I've been watching dvds and reading online and doing crafts for the school fete. I've just got tv.

I spent Mothers Day here on my own. I reckon I've had a month of what most mums want: peace and quiet and meals in bed!

I'm looking forward to going home. I won't miss having a tube in my neck and injections in my stomach. I might miss being offered doses of morphine. And I'm keen to eat a good hamburger.

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.