Last week I taught my ethics class, and went to a yoga class. I’m back to doing normal things. On
Monday my wcc was 3.8. Normal range is 4 -11, so I was happy about
that. (It has since gone down to 2.2, but nevermind.) On Wednesday my HB was 98.
Beginning of normal range is 120. That's the best it's been. I took Matilda to Schools
Spectacular* (she now wants to join even more ensembles), we went to a
wedding (but not the reception - that would have been too much), and I
took Matilda shopping for a dress to wear to her Year 6 Farewell. I’ve
booked for us to have a little summer holiday where the children are
kept busy and we are all fed. So, I’m saying I’m closer to fine.
My
doctor is planning to phone manage me for the next fortnight, which
means I come in for blood tests, then go home and talk to her on the
phone. Much more efficient. I filled a few extra vials of blood this
week so they can tissue type me and then find a donor. The nurse who took
my blood asked if it is my first transplant. I said I only plan to have
one. Apparently some people have two. One patient has had three. These
are some very expensive patients. They should be marked somehow, so that
they have special privileges or right of way or are somehow protected
after so much of taxpayers’ money and medical expertise being invested
in them. I hope I’m worthy. Anyway, I have two sisters and one brother
who are in the running to be donors, and each have a 25% chance of being
a good match. If not, then we go to the international registry. My
doctor still hasn’t decided whether I need a bone marrow transplant or
not. We’re just getting ready in case I do. She’s going to consult other
specialists, and see what the bone marrow biopsy I had this week shows
us. (It’s really not as painful as it sounds). I’m feeling OK, except
for the bone pain caused by the medication, and some nausea, which are
manageable.
I’ve
been feeling like I want to spend less time in front of the computer.
I’ve been unsubscribing. Cancer has proven to be rather sociable, and it
has been lovely to talk to lots of friends. My doctor is quite bemused
that I bring a different person each time to my appointment, but really,
why not? I’ll be withdrawing from my university subject this week. I
don’t know how I had time to study before this started, but I really
just haven’t got into study mode yet for this trimester. I need a break.
It’s time to listen to music (Banjo’s new favourite song is
‘California’ by Joni Mitchell, which my friend put on my phone - makes a
nice change from Taylor Swift. Tonight I played the White Album while Clancy
was helping me make dinner), do drawings, pay attention to the people
around me. Really, if not now, then when? I want to reread my favourite
New York novels and trace on a map where the characters go. I want to
read new books for pleasure. For pleasure! I want to watch the DVDs that
my family and friends have brought me. I especially love that my uncle
gave a DVD of Bette Davis movies, and my old school friend lent me ‘Jane
Eye’ - the Orson Welles version, and other old period costume films.
That’s lovely. They know what I like.
I
need to do some cleaning up. I’ve noticed that since I’ve been ill and
people have been bringing us dinner, the children have been more lazy.
That has to change. The food roster finishes this week and I’ve written a
roster for the children to do chores around the house and help with
dinner. We’ll see how we go. If I do have the transplant we know we have
a food roster system we can implement to help the family.
I got my hair cut. The shorter style shows up the dark circles under my eyes.
Meanwhile,
my father, who is 80, has had a quadruple bypass. He came home from
hospital., only to get an infection (he may have had it from the start)
and return to hospital. He should be back home later this week. My
siblings have a roster system to help my parents. My mother is disabled
and unable to help him. It has been a quite a time for my family.
* Schools Spectacular highlights will air on ABC on 16 December, and the longer version on ABC2 on New Year's Eve at 6pm.
motherhood activism Australia, maternal feminism
Sunday, November 25, 2012
Wednesday, November 14, 2012
New games
Apparently
we’re playing a new game: how low can I go? My wcc today was 1.3.
That’s low. I have to give myself an injection on Saturday. I’ll be
switching to another medication, but the process takes time. I’ve booked
a Bone Marrow Biopsy for next week, and I’ve started talking to the
Transplant Co-ordinator. I can’t start the process (have my blood typed
by the Red Cross, who are involved in the donor matching process) until
my bloods come up, so I’m a bit in limbo. Playing the waiting game.
I’m thinking today that I’d quite like to withdraw from my unit of uni. I haven’t made much of a start, and probably have quite enough to be going on with. If I have the transplant the whole process takes a year (four months of chemo, two months in hospital, six months at home, basically in isolation) so it doesn’t much seem to matter if I take a break from study now or later - it will be a substantial break and I won't be ready to do a prac anytime soon.
Also, I’m thinking about my hair. I’ve been keeping it short, and it has recently gone ‘boof’, as thick curly hair does. I could keep it short so I fit in better with the other Haematology patients, and there isn't so much to lose when I have treatment, or I could grow it while I can as a last hurrah for a while. What do you think?
I’m thinking today that I’d quite like to withdraw from my unit of uni. I haven’t made much of a start, and probably have quite enough to be going on with. If I have the transplant the whole process takes a year (four months of chemo, two months in hospital, six months at home, basically in isolation) so it doesn’t much seem to matter if I take a break from study now or later - it will be a substantial break and I won't be ready to do a prac anytime soon.
Also, I’m thinking about my hair. I’ve been keeping it short, and it has recently gone ‘boof’, as thick curly hair does. I could keep it short so I fit in better with the other Haematology patients, and there isn't so much to lose when I have treatment, or I could grow it while I can as a last hurrah for a while. What do you think?
Monday, November 12, 2012
The Village
The village has been out in full force today.
A friend drove me to my doctor’s appointment. I appreciate the company. My doctor had been away for two weeks, so we had some catching up to do. She’s keen to begin the process heading towards a bone marrow transplant. She says I’m a good candidate, as if that’s a honoured and enviable position. Why wouldn’t anyone want to be a good candidate for a bone marrow transplant? The members of my family are back as contenders for being possible donors. My doctor has consulted with other specialists, so now I need to tell my brothers and sisters this is a game the whole family can play. My youngest sister was disappointed when I told her last week she couldn’t be a donor. She’ll be happy now. I don’t know the time frame, nor the ins and outs of the process, but a doctor will be telling me about it next week. Also, next week, I’ll be having another bone marrow biopsy, to see how effective the medication has been at a cellular level.
In the meantime, my bloods are low. Wcc is 2, and HB is 90. I’ve been feeling tired and woozy today, and my bones hurt.
And here’s where the village comes in. My 8 year had a tummy ache and didn’t want to go to school, so she stayed with a friend while I went to hospital. People gave us food today. Someone brought my daughter home from school for me. My 10 y o is on antibiotics and forgot to bring her medicine home, so I rang the school and the School Principal dropped it off at our house.
And then my friend came over and gave me a mobile phone and a charger, which she had set up with a card, and a number, and one of my favourite albums. I’ve never had a mobile phone before.
It’s been a big day for someone who spent a lot of it lying down. I'm so grateful the village is taking care of me.
Wednesday, November 07, 2012
More information
Today
I discussed with my doctor what I might be planning for. I asked if I
should book our Christmas holiday now. She told me to wait a week.
My wcc is down to 2.8. That means I need to keep away from infections and come into hospital if I get a temperature. My HB is 92, which is still low, so, although I’m OK to walk and talk at the same time, I won’t be attempting an exercise class anytime soon.
We talked about what happens next. If my wcc doesn’t go up next week, I’ll be having a bone marrow biopsy sooner rather than later, to see what’s happening to my cells. If the cells in my bones haven’t gone into remission, treatment will be more aggressive. That’s code for chemotherapy. Now, for most patients with cancer, chemotherapy means going into hospital one day each six weeks or so. Not so for patients with leukaemia. For me it means three weeks in hospital, getting chemo, transfusions, platelets, IV antibiotics, then one week at home, then three weeks in hospital, and so on.
I was talking to my friend today about the meal roster, and how I’m feeling better and maybe it isn’t necessary to have a meal roster anymore. She advised me to hold on. We don’t know what’s coming. And if I’m spending three weeks at a time in hospital, I’ll be fine (although I don’t want to miss out on end of celebrations, especially the school Presentation Day), but my family will be needing lots of support.
In the meantime, I’m trying to be normal. I’ve started my unit of study to do over summer, thinking that if I need to withdraw, I’ll withdraw. I do kind of feel like just reading what I like and watching old movies and enjoying myself, but if I’m going to be OK, I’d like to have a unit of my course completed, and be in a better position to finish the degree next year, without too much stress. Lets see how I go. There might be lots of lying around ahead of me.
My wcc is down to 2.8. That means I need to keep away from infections and come into hospital if I get a temperature. My HB is 92, which is still low, so, although I’m OK to walk and talk at the same time, I won’t be attempting an exercise class anytime soon.
We talked about what happens next. If my wcc doesn’t go up next week, I’ll be having a bone marrow biopsy sooner rather than later, to see what’s happening to my cells. If the cells in my bones haven’t gone into remission, treatment will be more aggressive. That’s code for chemotherapy. Now, for most patients with cancer, chemotherapy means going into hospital one day each six weeks or so. Not so for patients with leukaemia. For me it means three weeks in hospital, getting chemo, transfusions, platelets, IV antibiotics, then one week at home, then three weeks in hospital, and so on.
I was talking to my friend today about the meal roster, and how I’m feeling better and maybe it isn’t necessary to have a meal roster anymore. She advised me to hold on. We don’t know what’s coming. And if I’m spending three weeks at a time in hospital, I’ll be fine (although I don’t want to miss out on end of celebrations, especially the school Presentation Day), but my family will be needing lots of support.
In the meantime, I’m trying to be normal. I’ve started my unit of study to do over summer, thinking that if I need to withdraw, I’ll withdraw. I do kind of feel like just reading what I like and watching old movies and enjoying myself, but if I’m going to be OK, I’d like to have a unit of my course completed, and be in a better position to finish the degree next year, without too much stress. Lets see how I go. There might be lots of lying around ahead of me.
Monday, November 05, 2012
Nearly Normal
Today
my bloods are closer to normal than they have been since this whole
thing started. They’ve been up. They’ve been down. There was nowhere
else to go. My wcc today is 17 (a little high). My HB 94 (a little
low). My platelets 271 (OK) and my neutrophils 14.8 (close enough).
On my pathology request form today I noticed my condition as ‘CML with blast crisis.’ That’s bad. I told them I’d feel a lot better if it just said ‘CML’.
Today, I said to my doctor that I’m thinking, optimistically, these first two months of investigations and getting me stablised could be the worst part of the whole disease. That is, if the bone marrow biopsy in a few weeks shows no accelerated or blast cells. She said that’s possible. And hopeful. Once I’m stable, I could tick along on my medication (the side effects are not so bad on the lower dose, although I’m still needing a nap every day) with a blood test every few months to just check I’m still OK. However, if the bone marrow biopsy shows no remission, I might be moving onto more aggressive treatment, and that means chemo and/or a bone marrow transplant.
Here’s hoping the worst part is these few months.
Apparently, I’m looking normal. Lets hope the inside soon matches the outside.
On my pathology request form today I noticed my condition as ‘CML with blast crisis.’ That’s bad. I told them I’d feel a lot better if it just said ‘CML’.
Today, I said to my doctor that I’m thinking, optimistically, these first two months of investigations and getting me stablised could be the worst part of the whole disease. That is, if the bone marrow biopsy in a few weeks shows no accelerated or blast cells. She said that’s possible. And hopeful. Once I’m stable, I could tick along on my medication (the side effects are not so bad on the lower dose, although I’m still needing a nap every day) with a blood test every few months to just check I’m still OK. However, if the bone marrow biopsy shows no remission, I might be moving onto more aggressive treatment, and that means chemo and/or a bone marrow transplant.
Here’s hoping the worst part is these few months.
Apparently, I’m looking normal. Lets hope the inside soon matches the outside.
Friday, November 02, 2012
Adventures in CML
I spoke too soon about not needing to pack a hospital bag. I’d better post an update before anything else happens.
I've spent two nights in hospital. My wcc was 2.6 and my haemoglobin too low at 73 (normal range for women is 120 -160; that explains why I was puffing as I was walking around on the weekend), so they gave me a transfusion - two units. During the second unit my blood pressure was going down and my temperature going up, so I was admitted. A few bags of IV antibiotics later, here I am. I took a break from the Leukaemia meds, but have started back on a lower dose, and taking antibiotics. On leaving hospital my HB was 92 and my wcc was 2.2, which is kind of good, because if it immediately galloped back up, that would mean the cancer is very aggressive. But it means I have nothing with which to fight infection.
When I went off to the appointment I left my 8 y o with our neighbour, saying I'd be two hours tops. I didn’t pack a hospital bag. When I had to stay I realised I didn't have his phone number, nor could I remember his surname. I rang my friend asking her to walk to my neighbour's house to collect my child. I had to cancel the orthodontist appointment I'd waited six weeks for, and called the school to ask them to send my other kids home with another family, even though I couldn't contact the parents of that other family. My friend who had driven me to my appointment was excellent company and stayed with me for ten hours. She arranged other people to take her kids. Lots of people called me at hospital, and a friend drove me home. It really takes a village.
In the Haematology Ward I meet other patients. They are at all stages of the Haematological diseases and most seem to have spent long periods in hospital.
When I came out of hospital it was Halloween. My 8 y o wanted to go Trick or Treating. I wasn’t up to it, so asked my other neighbour if my daughter could knock on their door after dinner. She agreed, and then took my daughter to other houses in the street. The village.
The morning after I came out of hospital I had another appointment. Another friend took me, and I packed a hospital bag, just in case. My wcc was 2.0, but my HB was 98. My platelets had risen to 101, which was good. Because my Neutrophils were still too low at 0.3 (normal is 2), I’m now taking injections of GCSF (granulocyte-colony stimulating factor) to stimulate my bone marrow. The nurse gave me my first one, but I’m doing the next one at home. I told her I used to give my cat insulin injections. She said I’d be fine. I’m still on the Leukaemia drug (Glivec, if you’re interested), but a smaller dose. Side-effects? The skin on my face is rough and sore. I have pain in my bones (I can take panadol) and, as before, I’m expecting facial swelling (just pretend I’ve had botox) and swollen eyes (I’ll be wearing my sunglasses more often than usual).
I need to not get an infection. If I get a temperature of 38 I need to go straight to hospital. I’m rallying the family members to put their dirty tissues in the bin and flush the toilet themselves. Two children have coughs. I’m carrying around hand sanitizer. A patient I met who had an fection had been in hospital for a month. It is all becoming rather serious.
So, now I’m on uppers and downers for my wcc to try to settle in the normal range. I’m the Elvis of blood.
Thursday, October 25, 2012
Reasons to be grateful
Last night I puked up my meds. Not uncommon, apparently, but not good. I rang the hospital and they said to just try again tonight, but if the meds don't stay down, I need to come in.
Today I'll be asking my pharmacist for anti-nausea drugs that I can get without a prescription. I'll try eating something bland for dinner and take the meds in portions throughout the meal. If all goes well, I'm off to the theatre with my friend. If not, I'm off to hospital.
So, while I'm worrying, I'm going to list reasons to be grateful.
I live 15 minutes away from the hospital and specialist care. It takes 15 mins to get there. More to park.
I get my medical care under Medicare. I'm glad I live in Australia.
I'm not the breadwinner. I don't have to take time off work and plunge my family into poverty because I'm sick. I have a partner who is looking after us.
All my other commitments are things I can take a break from. I can drop my prac, take a break from study and volunteering and my little jobs, and focus on getting well. I am a bit sad about leaving my storytelling job at the library; storytelling using puppets and props, for clients with disabilities. I'd worked on finding stories and how to tell them theatrically, and I'd just about gathered enough that I could retell, so the job was about to get much easier. It was challenging, and I was getting paid to write and perform. Now it is something on my resume.
Most of all I'm grateful that I have such kind people around me. Everyone who I have told has offered to help. My friend is organising a food roster. People are bringing me comedy DVDs to keep my spirits up, and books to read. People are driving me to my appointments. People have offered to clean my house, pick up my kids, rub my feet, pick up groceries. I really am overwhelmed by how kind people are.
So, I'll be focusing on that today, and trying to stay out of hospital.
Today I'll be asking my pharmacist for anti-nausea drugs that I can get without a prescription. I'll try eating something bland for dinner and take the meds in portions throughout the meal. If all goes well, I'm off to the theatre with my friend. If not, I'm off to hospital.
So, while I'm worrying, I'm going to list reasons to be grateful.
I live 15 minutes away from the hospital and specialist care. It takes 15 mins to get there. More to park.
I get my medical care under Medicare. I'm glad I live in Australia.
I'm not the breadwinner. I don't have to take time off work and plunge my family into poverty because I'm sick. I have a partner who is looking after us.
All my other commitments are things I can take a break from. I can drop my prac, take a break from study and volunteering and my little jobs, and focus on getting well. I am a bit sad about leaving my storytelling job at the library; storytelling using puppets and props, for clients with disabilities. I'd worked on finding stories and how to tell them theatrically, and I'd just about gathered enough that I could retell, so the job was about to get much easier. It was challenging, and I was getting paid to write and perform. Now it is something on my resume.
Most of all I'm grateful that I have such kind people around me. Everyone who I have told has offered to help. My friend is organising a food roster. People are bringing me comedy DVDs to keep my spirits up, and books to read. People are driving me to my appointments. People have offered to clean my house, pick up my kids, rub my feet, pick up groceries. I really am overwhelmed by how kind people are.
So, I'll be focusing on that today, and trying to stay out of hospital.
Bones
As a child my nickname was Bones, because I was so skinny it was painful for adults when I sat on their lap.
Yesterday my white cell count was 22. That's a freaking miracle - down from 124 last week. That's how crazy this drug is. It's working. I like that it has the word 'live' in its name. I like that I now have my own script and am developing a relationship with a local pharmacist who will order it in each time I need a new bottle. These drugs aren't stored at the pharmacy. They cost $5000 a bottle. (That's not what I pay.) Here's the downside. The drugs make my bones hurt. Now, I have bones in every part of my body, so that's a lot of hurting. It may not all hurt at once, but every part is taking turns. My hands hurt. My back. My hips. My jaw. My feet. This isn't the time to start trying to wear ballet flats.
I'll be seeing my doctor twice next week, down from every second day. I no longer need to pack a hospital bag every time I get my blood checked. I've asked people to take me to my appointments, because I've been too tired to be able to drive home, but I'm finding that it's lovely to spend that time with people. I've been a little less tired, and my head has cleared a little, but I might keep asking people to come with me to my appointments because it's nice to have the company. Next week I'll ask about pain relief. I couldn't take certain ones with the chemo drugs, and I can't take certain others with the Leukaemia drugs, so I'll just wait it out, now I've switched drugs, and be Bones again for a while.
Today wasn't a day I saw my doctor. I thought I might try going to yoga to stretch myself, figuring if I need to lie down during it, no-one would mind. But no. My two older girls are on school camp. Because we had no driving around to do in the afternoon I suggested Banjo play on the playground equipment. She fell out of a tree and hurt her wrist. I had walked to school (which hurt, but I have to keep moving) so another mum got her car and gave us a lift home. Last night I received a call from a teacher at camp. Matilda had something stuck in her eye and it wasn't coming out. She was uncomfortable. If it wasn't better in the morning they would take her to a doctor. I suggested that a GP wouldn't do anything except send them to a specialist. It happened before when Matilda was a preschooler. A piece of bark had stuck under her eyelid and I took her to the eye hospital. I have a rule now - if something is stuck in an eye longer than an hour I drive to the eye hospital. I'm not messing around with anyone's sight. And normally when a child falls and has an injury I drive to the hospital. This after learning the hard way. Anyway, I wanted to start a new relationship with a doctor who had been recommended (for me, someone more personal and private - the bulk billers were impersonal, the pay up fronts were - well, too expensive and hard to get an appointment). I needed to start again on investigating Banjo's tummy pains. So, we went to the doctor's, then to book the x ray and ultrasound, then home to hear a phone message that the School Principal had taken Matilda to a local optometrist who had removed some stuff from under her eyelid and she was now fine. Then back for the x-ray and wait an hour for the results. I told Banjo that if we had to go to hospital, I would need to come home for a nap first. She looked appalled. O happy day, no fracture, and home for a rest. So the day ended much better than it could have. It's been one of the few days in which I've thought a mobile phone would be handy.
Yesterday my white cell count was 22. That's a freaking miracle - down from 124 last week. That's how crazy this drug is. It's working. I like that it has the word 'live' in its name. I like that I now have my own script and am developing a relationship with a local pharmacist who will order it in each time I need a new bottle. These drugs aren't stored at the pharmacy. They cost $5000 a bottle. (That's not what I pay.) Here's the downside. The drugs make my bones hurt. Now, I have bones in every part of my body, so that's a lot of hurting. It may not all hurt at once, but every part is taking turns. My hands hurt. My back. My hips. My jaw. My feet. This isn't the time to start trying to wear ballet flats.
I'll be seeing my doctor twice next week, down from every second day. I no longer need to pack a hospital bag every time I get my blood checked. I've asked people to take me to my appointments, because I've been too tired to be able to drive home, but I'm finding that it's lovely to spend that time with people. I've been a little less tired, and my head has cleared a little, but I might keep asking people to come with me to my appointments because it's nice to have the company. Next week I'll ask about pain relief. I couldn't take certain ones with the chemo drugs, and I can't take certain others with the Leukaemia drugs, so I'll just wait it out, now I've switched drugs, and be Bones again for a while.
Today wasn't a day I saw my doctor. I thought I might try going to yoga to stretch myself, figuring if I need to lie down during it, no-one would mind. But no. My two older girls are on school camp. Because we had no driving around to do in the afternoon I suggested Banjo play on the playground equipment. She fell out of a tree and hurt her wrist. I had walked to school (which hurt, but I have to keep moving) so another mum got her car and gave us a lift home. Last night I received a call from a teacher at camp. Matilda had something stuck in her eye and it wasn't coming out. She was uncomfortable. If it wasn't better in the morning they would take her to a doctor. I suggested that a GP wouldn't do anything except send them to a specialist. It happened before when Matilda was a preschooler. A piece of bark had stuck under her eyelid and I took her to the eye hospital. I have a rule now - if something is stuck in an eye longer than an hour I drive to the eye hospital. I'm not messing around with anyone's sight. And normally when a child falls and has an injury I drive to the hospital. This after learning the hard way. Anyway, I wanted to start a new relationship with a doctor who had been recommended (for me, someone more personal and private - the bulk billers were impersonal, the pay up fronts were - well, too expensive and hard to get an appointment). I needed to start again on investigating Banjo's tummy pains. So, we went to the doctor's, then to book the x ray and ultrasound, then home to hear a phone message that the School Principal had taken Matilda to a local optometrist who had removed some stuff from under her eyelid and she was now fine. Then back for the x-ray and wait an hour for the results. I told Banjo that if we had to go to hospital, I would need to come home for a nap first. She looked appalled. O happy day, no fracture, and home for a rest. So the day ended much better than it could have. It's been one of the few days in which I've thought a mobile phone would be handy.
Sunday, October 21, 2012
Changing Direction
At last post my wcc was 124 and I started on the chemo drugs. On Saturday my wcc was 120. Not great, but a change in direction, and a significant one. I was instructed to increase the meds. Today, my wcc is, (and I was nervous about this - I'd packed a hospital bag in case I was admitted), 78.6. Good news. My doctor acquired some CML medication for me to get started on while my application for the drug is being processed - quite a bureaucratic process by all accounts.
We also had a quick chat about the possibility of a bone marrow transplant, and starting to look for donors. Good news for my children - they can't be donors. (There goes my threat to make them clean up after themselves.) My doctor thinks we should be able to find a donor who isn't related to me. If it comes to that.
When I woke up on Saturday morning I felt a little better than I had in weeks. My mind was a bit clearer. I don't feel great - I have cramps and an upset stomach - but I started to feel a little more positive.
I'm in a Facebook group with other students who are mums, and whenever I'm about to go in for a blood test, I've been asking them to guess what my wcc will be. Making it a game. Why not? It helps to not take it all too personally.
A change in direction is good! I hope my wcc will never be as high as that again. More blood tests, and in about a month, another bone marrow biopsy. Now we have to push all my results back to the chronic phase, then into remission.
We also had a quick chat about the possibility of a bone marrow transplant, and starting to look for donors. Good news for my children - they can't be donors. (There goes my threat to make them clean up after themselves.) My doctor thinks we should be able to find a donor who isn't related to me. If it comes to that.
When I woke up on Saturday morning I felt a little better than I had in weeks. My mind was a bit clearer. I don't feel great - I have cramps and an upset stomach - but I started to feel a little more positive.
I'm in a Facebook group with other students who are mums, and whenever I'm about to go in for a blood test, I've been asking them to guess what my wcc will be. Making it a game. Why not? It helps to not take it all too personally.
A change in direction is good! I hope my wcc will never be as high as that again. More blood tests, and in about a month, another bone marrow biopsy. Now we have to push all my results back to the chronic phase, then into remission.
Wednesday, October 17, 2012
Another day, another plan.
It turns out my disease is more progressed than we first thought. The bone marrow biopsy results show elements of the next phases, accelerated and blasts. Also, my white cell count has increased over the fortnight since this journey started. I started with a wcc of 70. Today it is 124. So, we have a new plan. I’m starting on medication today that will hopefully bring down my wcc. It is like chemotherapy in tablet form. We had to find a pharmacist who stocks it, and when he gave it to me he said ‘it’s full on’, and ‘good luck’. I’ve signed the paperwork to start on the medication for CML. I’ll be getting my blood tested every second day, and if the results aren’t changing the way we want they’ll admit me to clean my blood or start me on chemotherapy.
We also had a chat about the possibility of a bone marrow transplant down the track. Although I’m from a large family, most members of my family have a genetic predisposition to bowel cancer. We had genetic testing when my sister was diagnosed. I have one sister who doesn’t have this gene, and I might have to ask her for a big favour.
As for now, I’ll take it one blood test at a time.
Tuesday, October 16, 2012
wcc
I
was going to post a few weeks ago saying that my body has been coming
up with new and interesting ways to tell me to rest. I had no idea how
true that statement would have been.
I’ve been feeling unwell for the past few weeks. I had a big ulcer on my tongue which stopped me from being able to talk and eat properly. I thought I was run down. It cleared as ulcers do. Then I realised that through this time I’d actually had a sore neck. While the children were off my hands I popped in to see the doctor, who thought I had a problem with my thyroid, so sent me for a blood test and an ultrasound. That night the doctor rang to say I had to come in first thing in the morning, and if I felt worse to go to hospital. I was thinking I might need to get my thyroid out. When I went in the see the doctor next day everyone in the surgery knew to expect me, and was abuzz that I was there. Not a good sign.
Anyway, it turned out my white cell count (wcc) was 70. The normal range is 4-11. I was given a referral to a Haematologist. I went home and looked online at the words in the referral, and the details of the blood test report. The words that kept coming up were bone marrow, immunology and leukaemia. The specialist is part of the cancer care team. That night I felt worse, so went to hospital. They gave me some fluids and medication and took lots of blood. I saw a member of the Haematology team and organised a bone marrow biopsy to see exactly what is going on and what my treatment will be.
I have Chronic Myeloid Leukaemia. It can be treated with medication I can take at home. Untreated, it becomes acute and is fatal. I’ll be taking the treatment. I don’t know yet what the side effects will be, and how I’ll feel. At the moment I’m just very tired, a bit nauseous and short of breath. I hope to feel better soon. I start the treatment next week. Of all the leukaemias to get, this one is the most manageable, with the greatest survival rate. So, I'm feeling pretty lucky. Lucky that I live in 2012, because this cancer can now be treated with designer drugs, and lucky to live in a city so I have access to medical care. We haven't ruled out chemotherapy at this stage, as more test results are being reported.
The timing has been good. Because I had planned to be on prac I had cleared four weeks to do nothing but that. I’ve cancelled prac, so have a few more weeks to just deal with the sickness and try to get better. I’ve enrolled in one unit of study over summer, but can withdraw if I don’t feel I can manage.
Life can change pretty quickly. I’ll be a keeping close watch on my wcc, and seeing a haematologist, for the rest of my life.
I’ve been feeling unwell for the past few weeks. I had a big ulcer on my tongue which stopped me from being able to talk and eat properly. I thought I was run down. It cleared as ulcers do. Then I realised that through this time I’d actually had a sore neck. While the children were off my hands I popped in to see the doctor, who thought I had a problem with my thyroid, so sent me for a blood test and an ultrasound. That night the doctor rang to say I had to come in first thing in the morning, and if I felt worse to go to hospital. I was thinking I might need to get my thyroid out. When I went in the see the doctor next day everyone in the surgery knew to expect me, and was abuzz that I was there. Not a good sign.
Anyway, it turned out my white cell count (wcc) was 70. The normal range is 4-11. I was given a referral to a Haematologist. I went home and looked online at the words in the referral, and the details of the blood test report. The words that kept coming up were bone marrow, immunology and leukaemia. The specialist is part of the cancer care team. That night I felt worse, so went to hospital. They gave me some fluids and medication and took lots of blood. I saw a member of the Haematology team and organised a bone marrow biopsy to see exactly what is going on and what my treatment will be.
I have Chronic Myeloid Leukaemia. It can be treated with medication I can take at home. Untreated, it becomes acute and is fatal. I’ll be taking the treatment. I don’t know yet what the side effects will be, and how I’ll feel. At the moment I’m just very tired, a bit nauseous and short of breath. I hope to feel better soon. I start the treatment next week. Of all the leukaemias to get, this one is the most manageable, with the greatest survival rate. So, I'm feeling pretty lucky. Lucky that I live in 2012, because this cancer can now be treated with designer drugs, and lucky to live in a city so I have access to medical care. We haven't ruled out chemotherapy at this stage, as more test results are being reported.
The timing has been good. Because I had planned to be on prac I had cleared four weeks to do nothing but that. I’ve cancelled prac, so have a few more weeks to just deal with the sickness and try to get better. I’ve enrolled in one unit of study over summer, but can withdraw if I don’t feel I can manage.
Life can change pretty quickly. I’ll be a keeping close watch on my wcc, and seeing a haematologist, for the rest of my life.
Monday, October 01, 2012
Words on the way out
I’ve already said I’m not using the words ‘sexy’ or ‘hot’ anymore (not that I did use them anyway), because they are so overused they are emptied of meaning. There are lots of other words that could get a run and describe more clearly what we mean: fit, attractive, pretty, glamorous, aroused, and so on.
I’ve also stopped using the word ‘lame’ unless I’m describing someone who can’t walk. I think it is unfair to use the word ‘lame’ as shorthand for an idea that is unworkable, or a joke that falls flat. It’s like saying something is ‘gay’ as an insult. Not on. As we’ve seen in the paralympics, even the lame aren’t lame. So lets just leave it out.
I’m adding another one. ‘Inappropriate’. An overused word that is code for something more specific that we aren’t saying. Especially when talking about issues around protecting children. I realised this when we were talking about how to teach children what songs may or may not be suitable to play in a primary school. Telling children that some songs are ‘inappropriate’ doesn’t give them any direction. We need to be more specific, not just in this case, but, I’ve observed, whenever we use the word. We could say that something is not consistent with policy, or is hurtful or damaging, or unsuitable because, or simply not what we want. ‘Inappropriate’ has had its day, and is on the way out.
Sunday, September 16, 2012
Welcome to my week
This week is a big one, the last for third term.
I have two assignments due. The children have two evening concerts. Matilda has debating and public speaking. Oh, and a cake stall, just to round out the schedule. As well as our usual regular activities. I need to clean up the whole house so the babysitter doesn’t think we live like pigs. This involves a massive op shop donation, that is currently sitting in our hallway, known as purgatory (the goods are on their way out, but haven’t made it to their destination yet). I’ve been asking the children to do some extra chores, but they say they need a rest. I understand. If I could at all be cloned, now would be a good time.
I’m hoping my back will feel better soon. I may or may not have hurt it doing a bridge in yoga, and may or may not have been a little too pleased with myself when the teacher asked me to demonstrate to the class.
I have two weddings coming up and I’ve managed to buy myself a new dress. Not a new second hand dress but brand new. That’s exciting for me. I justify it to myself by reminding myself I hardly ever buy new, and the only time I’ve worn a wedding dress was playing a madwoman on stage. I managed to get into the city, buy the dress, and get out before the protests. The dress is very much like this, and I’m happy. http://shop.collettedinnigan.com.au/hermosa-lace-dress/
It's St Andrews blue. My best colour. I had a very similar dress I bought about thirty years ago that I bought at an op shop and wore until it fell apart.
It was interesting talking to young sales assistants. I know exactly what I want and what suits me. I know my colours. I know I want to wear a bra, so nothing strapless or strappy or backless. Short sleeves are good at my age. I’m a short person, so don’t wear fabrics with big prints. Skirts to the knee or the floor, but nothing short. No V necks - round or sweetheart necklines are better on me. And the fabric must breathe, so nothing that feels synthetic. They weren’t any help.
After this week we have two weeks of sleeping, singing, swimming, drawing, and generally mootching about and pottering around at home. We’ll also be visiting my mum, who is recovering from a stroke. She needs to practice talking. I’m sure we can help with that. And I’ll be writing a piece about sloths in literature and the value of idleness. Ahh. Idleness.
I have two assignments due. The children have two evening concerts. Matilda has debating and public speaking. Oh, and a cake stall, just to round out the schedule. As well as our usual regular activities. I need to clean up the whole house so the babysitter doesn’t think we live like pigs. This involves a massive op shop donation, that is currently sitting in our hallway, known as purgatory (the goods are on their way out, but haven’t made it to their destination yet). I’ve been asking the children to do some extra chores, but they say they need a rest. I understand. If I could at all be cloned, now would be a good time.
I’m hoping my back will feel better soon. I may or may not have hurt it doing a bridge in yoga, and may or may not have been a little too pleased with myself when the teacher asked me to demonstrate to the class.
I have two weddings coming up and I’ve managed to buy myself a new dress. Not a new second hand dress but brand new. That’s exciting for me. I justify it to myself by reminding myself I hardly ever buy new, and the only time I’ve worn a wedding dress was playing a madwoman on stage. I managed to get into the city, buy the dress, and get out before the protests. The dress is very much like this, and I’m happy. http://shop.collettedinnigan.com.au/hermosa-lace-dress/
It's St Andrews blue. My best colour. I had a very similar dress I bought about thirty years ago that I bought at an op shop and wore until it fell apart.
It was interesting talking to young sales assistants. I know exactly what I want and what suits me. I know my colours. I know I want to wear a bra, so nothing strapless or strappy or backless. Short sleeves are good at my age. I’m a short person, so don’t wear fabrics with big prints. Skirts to the knee or the floor, but nothing short. No V necks - round or sweetheart necklines are better on me. And the fabric must breathe, so nothing that feels synthetic. They weren’t any help.
After this week we have two weeks of sleeping, singing, swimming, drawing, and generally mootching about and pottering around at home. We’ll also be visiting my mum, who is recovering from a stroke. She needs to practice talking. I’m sure we can help with that. And I’ll be writing a piece about sloths in literature and the value of idleness. Ahh. Idleness.
Sunday, August 26, 2012
Screening of Miss Representation in Sydney
Paula, from the blog Questions For Women, has organised a screening of Miss Representation at Dendy Cinema at the Opera House. Mon 2 Sept at 6.30. $20.
I know lots of local feminists have been looking forward to seeing this film. I know I have. Just need to organise a babysitter.
http://questionsforwomen.org/2012/08/02/screening-of-miss-representation/
I know lots of local feminists have been looking forward to seeing this film. I know I have. Just need to organise a babysitter.
http://questionsforwomen.org/2012/08/02/screening-of-miss-representation/
Thursday, August 23, 2012
Dororthy Parker
Dorothy Parker and I shared a birthday yesterday, as we do very year. She and I are both Leo Snakes. Sometimes I think, if I hadn't had children, I would have ended up like her, drinking lots, considering my friends to be family, living with cats in a grubby apartment, thinking too much about my own dramas.
Bohemia
Authors and actors and artists and suchNever know nothing, and never know much.
Sculptors and singers and those of their kidney
Tell their affairs from Seattle to Sydney.
Playwrights and poets and such horses' necks
Start off from anywhere, end up at sex.
Diarists, critics, and similar roe
Never say nothing, and never say no.
People Who Do Things exceed my endurance;
God, for a man that solicits insurance!
I also love Mae West, another Leo Snake, who, at a time when women didn't do such things, created her own work, as a writer and performer. I've read her short novels, that the films and shows were based on, and they're good. Lots of insight into life during the 1920s - cross-racial relationships in Harlem, nightclubbing, criminals, slave trading (I mean trading women for into the sex industry). And, of course, she was arrested for profanity during her show, Sex, and was sentenced to ten days imprisonment for "corrupting the morals of youth." (just like Socrates) and she wrote about homosexuality. When her neighbours barred her boyfriend, an Afro-American boxer, from entering the apartment building, she simply bought the building. In her own way she was fighting discrimination and changing the world, and having lots of fun while earning lots of money.
Such sassy women! Literate, independent, gutsy and influential.
Saturday, August 18, 2012
Dorothy Porter - mother poem
Lets have a few Dorothys this week (it's Dorothy Parker's birthday on Wednesday).
I was tempted to call my first born Dorothy. I then considered a diminutive, my grandmother's name, then settled on something that rhymes with that. Her name suits her. But I do like the Dorothys.
You know how books are being repurposed now? At the library I work at they have open books hanging from the ceiling like birds in flight. They have a big chair made of books and an archway at the entrance to the library. I'm a little sad that one of those repurposed books is a book by Dorothy Porter.
Motherhood - Dorothy Porter
No longer will she
flash
like Fantasia
across the sea floor
the giant octopus is dying
in her blue den
her clusters of eggs
swell like cysts
the giant octopus is dying
her moody vivid nervous system
shut down and dun
the giant octopus is dying
her tentacles wave
like drowned arms
her ink bubbles away
the giant octopus is dying
she’s got nothing left
her eggs took the lot.
I was tempted to call my first born Dorothy. I then considered a diminutive, my grandmother's name, then settled on something that rhymes with that. Her name suits her. But I do like the Dorothys.
You know how books are being repurposed now? At the library I work at they have open books hanging from the ceiling like birds in flight. They have a big chair made of books and an archway at the entrance to the library. I'm a little sad that one of those repurposed books is a book by Dorothy Porter.
Motherhood - Dorothy Porter
No longer will she
flash
like Fantasia
across the sea floor
the giant octopus is dying
in her blue den
her clusters of eggs
swell like cysts
the giant octopus is dying
her moody vivid nervous system
shut down and dun
the giant octopus is dying
her tentacles wave
like drowned arms
her ink bubbles away
the giant octopus is dying
she’s got nothing left
her eggs took the lot.
Friday, August 17, 2012
Doing more, having more, except more space.
I need help sorting out my stuff.
I have too many books and Matilda wants me to get rid of some. I have collections of books about maternal feminism, books about literature, novels I've read, novels (classics) I haven't read, poetry books, art books, other non-fiction books, a box of plays, and the children have books - novels and non-fiction and picture books. Since I've been studying this time around I have been accumulating books on education, and gathering books that will help me teach English and Drama. Since I've had the storytelling job I've been gathering books about storytelling using puppets and props. I've been using the picture books to inspire the storytelling job as well. And I've been using fabrics that I've kept stored for years. For my playgroup job I've been using the kids' cds that I've bought over the years. And for uni I've been using everything - artbooks, music, poetry. So, you see, it's hard to decide what to get rid of.
I want to do more of my own creative work too. I know that having the stuff around doesn't necessarily mean living more creatively, eg the barely used piano. It just means living in mess.
So, what books should I let go of? Everything that you could get from the library? Everything that is available digitally, even though we have no digital reading devices?
That's another thing I need to review. I've never had a mobile phone. The kids have never had a DS or an ipod. We don't have ipads, or e-readers anything like that. There are lots of reasons why (don't need other bills to pay, we don't need them, the way they are made - the sourcing of the elements and the worker's conditions, we don't want to do things just because everyone else is (lets talk to children about peer pressure; adults aren't exempt), the fact that when everyone was getting mobile phones I had my hands full dealing with little children and didn't have anyone to call anyway. Clancy likes that I don't have a mobile phone because she sees many mums on their phones ignoring their kids and sees this as sad for their relationships. There have been times we've sat down in a waiting room and each pulled out a book to read, and the people around us have been shocked. That shouldn't be so remarkable.
But another reason is that these devices would just be lost in the mess of our house.
I'm wondering at what point is not having these things kind of oppositional and obstructive. When every day of one week someone says to me 'I'll text you', or 'text me', and I say, 'Sorry, I can't'? So far, at times when a mobile phone would have been handy, I've just asked people for help (broken down car) and people have helped me. Most other times I see people using them it isn't for emergencies ('I'm just leaving Central station.' 'Do you want the blue one or the green?'). I've never heard anyone give instructions for an emergency tracheotomy using a mobile phone. But I do wonder if I might be more involved with my siblings and friends if I had a mobile, and I need to get on top of apps as learning tools, because technology is supposed to be embedded in all learning at schools now.
Also, it's time to fix up the children's bedroom. Matilda is starting high school next year and needs her own desk. She likes order and shares her room with two messy sisters. The girls have been saying that our house (old, rented, cracking walls and peeling paint) isn't as orderly and functional as the houses of their friends. True. They're wondering why we are the only family they know who have mismatched chairs at the dining table. Our furnishings have been pieced together with all the care of a student share house. They want some design elements. (Damn you, Grand Designs and renovation tv shows!) They'd like an anteroom to keep their bags and shoes and hats - that's not going to happen. Time to get a loft bed with a desk underneath, but we'd better paint the room first. That's a big job for us.
What to do? All advice welcome and seriously considered.
I have too many books and Matilda wants me to get rid of some. I have collections of books about maternal feminism, books about literature, novels I've read, novels (classics) I haven't read, poetry books, art books, other non-fiction books, a box of plays, and the children have books - novels and non-fiction and picture books. Since I've been studying this time around I have been accumulating books on education, and gathering books that will help me teach English and Drama. Since I've had the storytelling job I've been gathering books about storytelling using puppets and props. I've been using the picture books to inspire the storytelling job as well. And I've been using fabrics that I've kept stored for years. For my playgroup job I've been using the kids' cds that I've bought over the years. And for uni I've been using everything - artbooks, music, poetry. So, you see, it's hard to decide what to get rid of.
I want to do more of my own creative work too. I know that having the stuff around doesn't necessarily mean living more creatively, eg the barely used piano. It just means living in mess.
So, what books should I let go of? Everything that you could get from the library? Everything that is available digitally, even though we have no digital reading devices?
That's another thing I need to review. I've never had a mobile phone. The kids have never had a DS or an ipod. We don't have ipads, or e-readers anything like that. There are lots of reasons why (don't need other bills to pay, we don't need them, the way they are made - the sourcing of the elements and the worker's conditions, we don't want to do things just because everyone else is (lets talk to children about peer pressure; adults aren't exempt), the fact that when everyone was getting mobile phones I had my hands full dealing with little children and didn't have anyone to call anyway. Clancy likes that I don't have a mobile phone because she sees many mums on their phones ignoring their kids and sees this as sad for their relationships. There have been times we've sat down in a waiting room and each pulled out a book to read, and the people around us have been shocked. That shouldn't be so remarkable.
But another reason is that these devices would just be lost in the mess of our house.
I'm wondering at what point is not having these things kind of oppositional and obstructive. When every day of one week someone says to me 'I'll text you', or 'text me', and I say, 'Sorry, I can't'? So far, at times when a mobile phone would have been handy, I've just asked people for help (broken down car) and people have helped me. Most other times I see people using them it isn't for emergencies ('I'm just leaving Central station.' 'Do you want the blue one or the green?'). I've never heard anyone give instructions for an emergency tracheotomy using a mobile phone. But I do wonder if I might be more involved with my siblings and friends if I had a mobile, and I need to get on top of apps as learning tools, because technology is supposed to be embedded in all learning at schools now.
Also, it's time to fix up the children's bedroom. Matilda is starting high school next year and needs her own desk. She likes order and shares her room with two messy sisters. The girls have been saying that our house (old, rented, cracking walls and peeling paint) isn't as orderly and functional as the houses of their friends. True. They're wondering why we are the only family they know who have mismatched chairs at the dining table. Our furnishings have been pieced together with all the care of a student share house. They want some design elements. (Damn you, Grand Designs and renovation tv shows!) They'd like an anteroom to keep their bags and shoes and hats - that's not going to happen. Time to get a loft bed with a desk underneath, but we'd better paint the room first. That's a big job for us.
What to do? All advice welcome and seriously considered.
Dorothy Hewett - mother poem
At the moment for uni I'm looking at Australian Theatre and doing an assignment on Dorothy Hewett's The Chapel Perilous. We have a number of plays to choose from (the ones prescribed for HSC Drama) and I'm a little embarrassed by how obvious my choice is.
Anyway, I thought it would be a good time to begin posting the motherhood poems I'd collected for Mamapalooza. (Remember I said I'd park those here?)
So here we go, beginning with a poem by Dorothy Hewett.
Tapestry - Dorothy Hewett
There is a lady in the forest
with a pointed headdress
on a carpet of leaves between the lion and the unicorn
and the emblematic trees.
What meaning has she (if any)
something to do with a perpetual
virginity forever untried
something to do
with the calm and gentle
lives of women
between the lion and the unicorn
one to devour one to love.
Anyway, I thought it would be a good time to begin posting the motherhood poems I'd collected for Mamapalooza. (Remember I said I'd park those here?)
So here we go, beginning with a poem by Dorothy Hewett.
Tapestry - Dorothy Hewett
There is a lady in the forest
with a pointed headdress
on a carpet of leaves between the lion and the unicorn
and the emblematic trees.
What meaning has she (if any)
something to do with a perpetual
virginity forever untried
something to do
with the calm and gentle
lives of women
between the lion and the unicorn
one to devour one to love.
Wednesday, August 15, 2012
Women are Heroes
I'd read about this book in The Guardian Weekly. An urban activist called JR has collected stories from women in developing countries about their lives, and taken close up photographs of their faces - they're often pulling silly faces. He has displayed these photographs in public spaces in their communities.
It's a celebration of women. A joyous celebration.
Click on the link to read a review with examples of the photographs and click on the video.
This is what good work looks like.
http://www.redbubble.com/people/redbubble/journal/9227271-book-review-women-are-heroes-by-jr?utm_source=bubblewrap&utm_medium=email&utm_term=Story2&utm_campaign=BubbleWrap_august_2012
It's a celebration of women. A joyous celebration.
Click on the link to read a review with examples of the photographs and click on the video.
This is what good work looks like.
http://www.redbubble.com/people/redbubble/journal/9227271-book-review-women-are-heroes-by-jr?utm_source=bubblewrap&utm_medium=email&utm_term=Story2&utm_campaign=BubbleWrap_august_2012
Saturday, August 04, 2012
Jessie Street - what year is this?
As part of my study I've been looking at Jessie Street's speech she made on radio in 1944. Her speech was made near the end of the war, about the place of women. It is entitled "Is it to be Back to the Kitchen?"
Have a read (it isn't very long) and count how many issues are still relevant, unresolved, today in 2012.
Jessie Street
‘Is It To Be Back to the Kitchen?’
Broadcast on ABC Radio’s National Program
17 April 1944
There is a good deal of talk just now about what they are going to do after the war with the women: Must they be made to return to the home? Are they going to take them out of the factory, the office, off the land?
To me, this sort of discussion is very disquieting. It makes me think we’ve already forgotten the reasons why we’re fighting this war. Aren’t we fighting for liberty, for democracy and to eradicate fascism and Nazism in every form? Surely we don’t mean liberty and democracy for men only? Indeed, I hope women will enjoy the liberty which they have helped to win and be permitted to choose what they want to do. Do you remember that one of the first things the Nazis did when they came to power was to put women out of the professions, out of the factories? They barred the doors of the universities to all but a few women and they severely limited women’s opportunities for any kind of higher education; by these methods the Nazis forced women back to the home – back to the kitchen. I can’t help thinking that if any attempt is made here after the war to force women back to the home, it will be proof that facism still has strong roots in Australia.
Women should not be forced to return to the home, but they should be free to return there if they wish to. I don’t like what’s implied in the suggestion that women will have to he forced back into the home – that’s a slight not only on home life, but also on the work of bearing and rearing children, don’t you agree? The greatest happiness for many women is to care for a home and to raise a family. The trouble in the past has been that society has failed to make it possible for all the women who wanted to have homes and raise families to do so.
And while we’re on the subject of women in the home, I think that this life could be made attractive to many more women by developing amenities and customs that render home less of a prison than it is to many women with young families. Just think of the prospects of family life, as lived under present conditions, to a clever, energetic, bright young girl. Soon after marriage there will be a baby, and from then on she cannot move unencumbered. The more babies, the harder she has to work and the greater her restrictions. If we want more women to choose home life, we must make home life less hard. But how can we do this? Well, we can have crËches and kindergartens and supervised playgrounds where children can be left in safe surroundings. Then we must change many of our conventions. Why should a woman do all the work in the home? Why can’t we, for example, have community kitchens and laundries? If a woman wants to work outside the home, why shouldn’t she? Let her be free to choose. There’s just as much and more reason to believe that the best interests of her family and of society will be served by giving a woman a free choice than by expecting her to adhere to a lot of worn-out conventions.
Anyway, the contribution that women can make to public life through the professions or in industry is important. Women in the past have been very much hampered by their inexperience in these spheres. They haven’t had the opportunity to qualify for representative positions or positions of control and direction. In other words, because of the lack of opportunity to gain experience they’re denied the opportunity of exerting any influence in framing policies or directing public affairs.
I am pretty sure that many women will remain in industry after the war, for we shall be in need of more skilled hands rather than less. Remember, we couldn’t exert a full war effort until women were absorbed into industry; therefore, how can we exert a full peace program without making use of their services? Everyone knows how short we are of houses and hospitals and offices, of furniture, of bathroom and kitchen fittings, of curtains, wallpaper, clothing, foodstuffs, in fact, hundreds of commodities. Can you imagine the tremendous amount of work that will be required? Not only have we to make up the deficiency of the war years, but we must provide all these amenities on a much larger scale after the war. There were large numbers of people before the war who had no homes, not even enough to eat; hospital accommodation was inadequate, and so on. Although all these could have been provided for a few million pounds, we believed we could not afford to better these conditions. It took a total war to show us what we could do with our own resources. If we can raise money for war we can raise it for peace, surely. It would be inexcusable in the future to condemn people to live under the conditions so many endured before the war.
Why is there so much opposition to women remaining in industry? The secret isn’t far to seek. It’s simply that they got paid less – they are cheap labour, certainly not, as so many have alleged, because they’re weaker or less efficient. Unfortunately, because their labour is cheaper, women not only threaten the wage standards of men workers, but they also threaten the standard of living of all workers. The obvious and just way to avoid this is to give equal pay to men and women.
To put this in a nutshell, I believe that in a democratic, free society women should be at liberty to choose whether they will take up home life or work outside the home; that men and women should receive equal pay and equal opportunity; that home life should be made less of a tie and the burden of raising a family be lightened. If we can face these peacetime problems with the spirit of determination and conciliation with which we’re facing our war problems, we may hope to solve them.
Have a read (it isn't very long) and count how many issues are still relevant, unresolved, today in 2012.
Jessie Street
‘Is It To Be Back to the Kitchen?’
Broadcast on ABC Radio’s National Program
17 April 1944
There is a good deal of talk just now about what they are going to do after the war with the women: Must they be made to return to the home? Are they going to take them out of the factory, the office, off the land?
To me, this sort of discussion is very disquieting. It makes me think we’ve already forgotten the reasons why we’re fighting this war. Aren’t we fighting for liberty, for democracy and to eradicate fascism and Nazism in every form? Surely we don’t mean liberty and democracy for men only? Indeed, I hope women will enjoy the liberty which they have helped to win and be permitted to choose what they want to do. Do you remember that one of the first things the Nazis did when they came to power was to put women out of the professions, out of the factories? They barred the doors of the universities to all but a few women and they severely limited women’s opportunities for any kind of higher education; by these methods the Nazis forced women back to the home – back to the kitchen. I can’t help thinking that if any attempt is made here after the war to force women back to the home, it will be proof that facism still has strong roots in Australia.
Women should not be forced to return to the home, but they should be free to return there if they wish to. I don’t like what’s implied in the suggestion that women will have to he forced back into the home – that’s a slight not only on home life, but also on the work of bearing and rearing children, don’t you agree? The greatest happiness for many women is to care for a home and to raise a family. The trouble in the past has been that society has failed to make it possible for all the women who wanted to have homes and raise families to do so.
And while we’re on the subject of women in the home, I think that this life could be made attractive to many more women by developing amenities and customs that render home less of a prison than it is to many women with young families. Just think of the prospects of family life, as lived under present conditions, to a clever, energetic, bright young girl. Soon after marriage there will be a baby, and from then on she cannot move unencumbered. The more babies, the harder she has to work and the greater her restrictions. If we want more women to choose home life, we must make home life less hard. But how can we do this? Well, we can have crËches and kindergartens and supervised playgrounds where children can be left in safe surroundings. Then we must change many of our conventions. Why should a woman do all the work in the home? Why can’t we, for example, have community kitchens and laundries? If a woman wants to work outside the home, why shouldn’t she? Let her be free to choose. There’s just as much and more reason to believe that the best interests of her family and of society will be served by giving a woman a free choice than by expecting her to adhere to a lot of worn-out conventions.
Anyway, the contribution that women can make to public life through the professions or in industry is important. Women in the past have been very much hampered by their inexperience in these spheres. They haven’t had the opportunity to qualify for representative positions or positions of control and direction. In other words, because of the lack of opportunity to gain experience they’re denied the opportunity of exerting any influence in framing policies or directing public affairs.
I am pretty sure that many women will remain in industry after the war, for we shall be in need of more skilled hands rather than less. Remember, we couldn’t exert a full war effort until women were absorbed into industry; therefore, how can we exert a full peace program without making use of their services? Everyone knows how short we are of houses and hospitals and offices, of furniture, of bathroom and kitchen fittings, of curtains, wallpaper, clothing, foodstuffs, in fact, hundreds of commodities. Can you imagine the tremendous amount of work that will be required? Not only have we to make up the deficiency of the war years, but we must provide all these amenities on a much larger scale after the war. There were large numbers of people before the war who had no homes, not even enough to eat; hospital accommodation was inadequate, and so on. Although all these could have been provided for a few million pounds, we believed we could not afford to better these conditions. It took a total war to show us what we could do with our own resources. If we can raise money for war we can raise it for peace, surely. It would be inexcusable in the future to condemn people to live under the conditions so many endured before the war.
Why is there so much opposition to women remaining in industry? The secret isn’t far to seek. It’s simply that they got paid less – they are cheap labour, certainly not, as so many have alleged, because they’re weaker or less efficient. Unfortunately, because their labour is cheaper, women not only threaten the wage standards of men workers, but they also threaten the standard of living of all workers. The obvious and just way to avoid this is to give equal pay to men and women.
To put this in a nutshell, I believe that in a democratic, free society women should be at liberty to choose whether they will take up home life or work outside the home; that men and women should receive equal pay and equal opportunity; that home life should be made less of a tie and the burden of raising a family be lightened. If we can face these peacetime problems with the spirit of determination and conciliation with which we’re facing our war problems, we may hope to solve them.
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