mother and grandmother

Before the funeral. #latergram

This is the text that I read at Mum's funeral. Here seems to as good place to keep it as any.

Hi I’m Janet – one of Kay’s daughters and I’m going to talk a little bit about Kay’s really important role as a mother and grandmother.  But first I’d just like to put something out there and maybe it’s a little bit awkward but I’m going to do it anyway. If Kay had loved horses and had died in a horse riding accident we would have all said she died doing what she loved and it would have been perfectly acceptable. Fifty years on from when she started smoking, it has become (with good reason) less and less acceptable and for Kay smoking became something she did away from others, and I didn’t really acknowledge it.  Sometime in the last week when I visited her at Caritas, as she was being wheeled outside for a cigarette she said to me, I do smoke you know. I used to love smoking too and there were times we enjoyed smoking together, as people do. Of course I wish she had stopped but in a way I miss that.
Ok let’s talk about Kay as a mother and a grandmother.  When Betty and I were growing up, our Mum was much younger than all the other mums. Sometimes I wanted an older Fletcher Jones type mum who knew all the right things to do and who dressed conservatively but most of the time she was our beautiful, youthful mum and we adored her.
After we grew up and left home to make lives of our own we seemed scattered for quite a while. Then mum started talking about starting a fish shop business. That didn’t happen but one day we woke up and we’d renovated an old restaurant in Gertrude street and we had a cafe! Goodness! For 6 years Betty Mum and I worked together. There were ups and downs and it was certainly hard work, but most of all, it bought us back together again.
One thing about Mum that Betty said, was that Mum had absolute belief in our abilities to do things that are non conventional. For example, Arcadia and Betty’s business.
As we got older and older, I think mum despaired of ever becoming a grandmother. She had me when she was barely twenty. When I became pregnant (some 40 years later) in 2003, she was overjoyed. However little Frank was born way too early and died soon after. Mum supported me and Gerard through that dark and difficult time in a very close and real way. For a long time she would regularly visit and we would garden together. Not talking much. Just being together.
So in 2005, when I found out I was pregnant again, she came with me to appointments where there might be bad news until the good news appointment where we discovered Grace was a healthy girl and we danced for joy. After Grace’s birth, Mum took to being a Nana with great gusto.
Two years later Ruby Lee was born and Mum was really happy all over again. Mum had a natural ability to communicate with babies and young children. Ruby lee would often sleep at Nana’s during the day. Mum’s presence seemed to reduce some of Ruby Lee’s general anxiety and Mum loved having Ruby for the day.
Then after another two years, Maeve was born. And mum had three grandchildren. I think that made her very happy. Maeve moved to Queensland when she was 6 months old but she loved to talk with her nana on the phone and on skype.  Even though she moved away when she was very little, Maeve took to her Nana immediately on seeing her. As if there had been no separation.
When Mum visited Ruby lee and Maeve in Queensland, she would sit in a chair and the girls would swarm all over her. They would bring her books to read, pencils to draw with and could be found all curled up in the same arm chair hours later.
When Kay and Lance came together, Lance’s daughters Rachael and Vivian became part of Kay’s family too. As did my partner Gerard and Betty’s partner Cam. Family was always an inclusive thing for Kay. Rachael told me that that Kay was a kind and loving step mum who welcomed her into her family with open arms. They shared many hobbies (I’m guessing cross stitch and knitting?) and had great conversations together. Vivian told me that she thought that although they weren't really open about how they felt for each-other they had kind of an unspoken agreement and they enjoyed spending quiet time in each other's company.
In closing I would just like to acknowledge how well Lance looked after Mum/Kay. Betty and I were talking about it the other day and we felt that it shouldn’t go unremarked. We know that he looked after her because she needed looking after and because he loved her. I’m sure it wasn’t always easy because such things never are. But just because it was done with love, doesn’t mean we should take it for granted. Thank you Lance.
The funeral seemed to go well, if you can say funerals go well. It was nice to see people, even if it was for a sad occasion which sets up a weird feeling. An old childhood friend of Mum's and a recent friend spoke. The house was full of people afterwards. Sad and strange.


Mum died last Tuesday, Remembrance day. She had been in the hospice for nearly two weeks and she became sicker quite quickly. Actually it all happened a lot more quickly than I expected. Even so we had some good visits with her and she was fairly with it up to a few days before her death. Grace and I visited on the Saturday before (in between visiting Gerard in two different hospitals - he is fine and back home) and I visited again during the day on Tuesday. The hospice looked after Mum very well and they minimised her discomfort as much as they could and I don't believe she was in any pain. However her breathing was difficult and I'm glad she could let go when she did.

It's a queer old time. I don't think the full weight of grief and loss has hit me yet. Been going through photos and planning to help Betty tidy up her garden for the funeral. There will also be a Northland trip as Grace has nothing to wear and I should be sewing something black for me. I'm thinking about speaking at Mum's funeral and thinking about what I would want to say. It's obvious that I would talk about how Mum delivered Frank and how she was there for me in a really big way afterwards. I could also talk about how Mum came to my ultrasound appointments and other results appointments when I was pregnant with Grace. How we danced with happiness when we found out that Grace was OK and a girl (although I would have been just as happy with a boy). I could also talk about how she was young and glamorous when we were children, how she drew us and the neighbour children pictures of her upcoming tubal ligation (a bit not done in those days).

I don't know whether to mention her smoking or not. She loved her cigarettes and sometime in the last week when I visited her, she said, I do smoke you know, as she was being wheeled outside for a fag. I used to love smoking too and there were times we loved to smoke together, as people do. But I was angry that she couldn't give up. I wanted more time with my mother, more time for Grace to have her grandmother. In the end I kind of let go of that anger so that I could have time with her. Who knows whether it will bite again. This is what I was thinking about in the shower (as sung by Joan Baez on one of our much played childhood car tapes).

Be not too hard for life is short
And nothing is given to man
Be not too hard when he is sold or bought
For he must manage as best he can

Be not too hard when he blindly dies
Fighting for things he does not own
Be not too hard when he tells lies
Or if his heart is sometimes like a stone

Be not too hard for soon he'll die
Often no wiser than he began
Be not too hard for life is short
And nothing is given to man
And nothing is given to man


Caritas series

It's been a bit of a day. Windy. My thoughts are buzzing but I can't seem to get anything done, and getting things done seems important and attractive but probably isn't really. Well, not beyond the basics anyway. And I have been on the threshold of tears for most of the day. It's all a bit much. Mum has gone to the hospice, the same one Gerard went to for a weeks respite two weeks ago. She seems to be getting more and more frail and now has difficulty walking. I think she is being offered thickened water. To stop her inhaling it. Hopefully that will make her cough less. I can't imagine what it would be like to have thickened water instead of real water or other liquids. Anyway it seems as though she is having good days and bad days and will be staying there longer than first thought.

Today I had the thought that really, Gerard should be running things at home while I visit mum and go through all the things that happen when your mother is dying. I feel cheated. And a bit lonely. We are all talking about mum today and wondering what will happen but it is not like before. We had a big talk about things today and I think he is going to try and be softer, to swear less. And I am going to try and be nicer too. There has been too much yelling and it doesn't do anyone any good. It would be good to get to a point where we can work on things together. There is still a lot to do in the garden. We had a working bee here a couple of weeks ago and some lovely local ladies weeded and mulched the front garden. It is so nice to look at it now. The back yard on the other hand is full of weeds and vegetables gone to seed that tower above me. There are bits of things that have been done, like I have pruned the plum tree and the blackberry bush. But I need to get some tomatoes in.

We have friends coming to mind Grace and Gerard on Wednesday nights so I can visit mum. I hate asking but I am very grateful for the help. Actually for all the kinds of help that we are getting (help deserves a post on its own). Dad and my sister are also coming to visit. Mum is mostly fairly alert and with it but I wonder how long for. Like I said before, good days and bad days. I'm wondering how to get some more visits in and I think I might just have to take Gerard with me. And I think we will have a whole family visit on the weekend. Everyone thought that was a good idea.

But really, it is all a bit too much. And kind of fucked.


Grace with Sheppard. She danced and danced! All ages gig #wearesheppard When I mentioned to Grace a couple of days I ago that I might be able to get tickets to an all ages Sheppard gig, she was beside herself with excitement. I was a bit worried about finding someone to mind Gerard but I decided to be brave and ask (it is always better to be brave and ask I'm finding). Owing to my anxiety and my desire that Grace should have something exciting in her holidays organised by her mum (lots of excitement with other people) I lined up two possibilities. Gerard was pretty happy to go with his friend Ross but it did occur to me that in the past this is the sort of thing Gerard would have done with Grace, not me.

Anyway, Grace was so excited beforehand. She insisted on wearing the lace up boots I found her at the opshop the other day that are two sizes too big. Some other local tweens and their mums came too. During the support Microwave Jenny, there was a guy who walked around in circles near where the mums were sitting eating chips and not drinking gin because it was an all ages gig.  In the gap between the two bands the kids started fidgeting and then Sheppard walked through the crowd and on to the stage. Once they started playing, Grace and her friends just danced and danced and danced. So much so that they got a call out from the band before they played their big hit Geronimo. How to thrill a group of nine and ten year old girls!

At dinner Grace and I were talking about the show and about how we are going to cut her t-shirt a bit shorter. Gerard said that he thought it was a good band t-shirt and seriously, that is one of the most positive things he has said in a long while. He put his head on the table and wished that he could have gone too. Sigh. And then he said that he would have been too tired. Or maybe I said that and then he said that. But you know. He knew he was missing out on something great with Grace, missing out on her first real band experience and he was sad. And in that sadness there was a strong glimmer of the old Gerard. Which made it even more sad. And yet despite him being sad and me being sad because well, because he was sad and missing out, I was kind of high from it. It's maybe not the sort of thing I would have done before but it's the sort of thing I would jump at now because as I explained to Grace the other day, we have to do the good things when we get the chance.

sitting with the bobheads


The Bob Dylan concert week before last was great. Not always an easy listen but lots to think about. And I felt full. Full of music and ideas. It was made better, and especially thrilled Gerard in a way that's hard to describe, by having really fantastic seats. Right in the middle, five rows from the front. We could sometimes see the expression on Bob's face and we were surrounded by devoted bobheads which was very interesting. One of them was keen to be in the same number seat for all the concerts and was enthusiastically trading tickets. At the end of the show as we were waiting for the venue to clear I commented to another bobhead that I had learnt 'Blowing in the Wind' at school when we did singing lessons sitting cross legged on the floor, looking up to the radio mounted high on the wall. He looked at me as though I was really old.

I was in two minds when the Dylan tickets came on sale. I didn't know whether Gerard would be well enough to go but I knew if I didn't get the tickets and then if he was well enough to go, we would kick ourselves for not booking. So, in the spirit of doing things now, and also thinking that if we were going to make the effort we might as well have good seats I got ready to book. The cheap seats weren't especially cheap anyway. And we always sit up the back. We had the chance of some very welcome help getting even better seats and I was glad of it. Being that close added a super extra layer of special.

In the days preceding I did worry a lot about Gerard being too tired or something going wrong, but he had a good nap in the afternoon and although I think he made an extra special effort. It was all ok. A friend arrived to pick us up, another friend to take Grace for a sleepover. We bickered in the car about how we were getting home, Gerard wanted to catch PT and I insisted we would catch a taxi. It was a silly argument because we were always going to catch a taxi - watching the crowded trams go past afterwards made me even more sure of that. But Gerard can be stubborn, cheap and not very realistic. Anyway Jody cut through the crap and and announced she was going to visit a friend in St Kilda and would be waiting when the show was over. Again, too special. I feel lucky and thankful that we have friends helping us out.

It was an amazing sparkly night. Gerard loved it and it was special for both of us. Worth the effort. Also Bob is living proof that you can be yourself, be old and be fabulous. I'm sure that applies even if you aren't a famous genius with a huge body of work.

two more weeks

Two more weeks of radiotherapy. The last two weeks of radiotherapy. Just this week and then next week and Gerard's radiotherapy will be done. I think we are counting down the days. His fatigue is extreme, last night at swimming he lay down on the hard wooden bench and fell into a deep sleep. The swimming lesson coordinator came to speak with me about Grace's progress and improvement and  I felt the need to explain. To explain why we always go to swimming lessons all together, to explain why he behaves oddly sometimes. I told him why briefly and I really wasn't prepared for the conversation that followed. His wife had breast cancer last year and is clear now but he was full of hesitancy and fear. Not in an inappropriate for a swimming lesson exchange way but in a human, you see me, I see you, way.

We're going to see Bob Dylan tomorrow night. I bought the tickets ages ago not knowing whether we would be able to go or not. To be honest, I think it is a bit borderline and I am afraid that I won't be able to manage how it goes, that we won't be able to get a taxi home and we'll be stuck in St Kilda with Gerard falling asleep in strange places. Or that something will happen during the performance. Goodness I hope not. And really there is no reason to think that will happen, he has been stable on his meds for a while now and none of the doctors have expressed concern about Gerard attending the concert. Gerard is keen so we will be giving it our best shot.

I've been in a grump since Sunday. Grace had a sleepover with possibly not enough sleep on Saturday night and then fell apart on Sunday. I was angry that it was taking up so much of my weekend and that between the wailings and the washing, I wasn't getting to my sewing and therefore wasn't addressing the current wardrobe crisis. Yesterday I bit the bullet and had an online shopping spree, figuring that only half the stuff I buy in person really works any way. So new jeans, soft black pants, some t-shirts and a bright blue linen cardigan because I am sick of wearing black and grey. I feel like such a frump, most of my clothes are at least three years old and because I don't have a big wardrobe they are also quite worn. I suppose it is quite sustainable to wear your clothes out. Other petty things I am grumpy about: the grottiness of our house and having a plan to fix it up but not having the money or the right sort of time, my inability to do basic housework or gardening tasks, not going anywhere on my own, being asked the same thing a bazillion times. Oh and the car. It looks like crap and the clutch hates me. Urgh. But I do have a craft weekend coming up that thanks to Dad and Nina I can attend! Which I am looking forward to hugely. Even if I have to go driving a pumpkin and wearing a sack cloth. Oh, and eating worms. Although seriously, the new jeans should have arrived by then. And we are having the it's been ten years, maybe it's time to replace the car conversation.

mowing the lawn

Mowed the grass for the first time in 15 years. Kind of shit job but also kind of fun.
So I mowed the grass today, which was good. We've been talking about it for a few weeks so it needed it. I haven't mowed the grass in 15 years so I suggested to Gerard that maybe he could boss me around while doing it. Quite a few people have offered to do our lawn but I think I need to do it myself at this stage. I want it to be something I am capable of doing. It started badly, Gerard was pulling weeds while I combed and snipped the dreadlocks out of Grace's hair. She looked through the bedroom window and Dad was lying on the ground. She freaked out and I rushed out, suspecting the worst. It turned out that he'd been not as strong as he'd thought and had fallen down while trying to pull a big weed out. Crisis averted.

I enjoyed pushing the lawn mower around but it stopped frequently as I don't yet have the knack. We had to wait a while before it could be started again and during one of these breaks, I was sitting with Gerard outside, and I just started crying. About whether I could be a good single parent. About how he fixed my world when he moved in; nails were removed from walls, doors were hung properly, shelves were made, hooks were put up, things weren't broken any more. Most of all I was crying about the prospect of one day losing my best friend.

Dried my eyes and went back to mowing the lawn and in the next break, Grace was all sad and we had cuddles and talked about why she was sad and about how Saturday can be a sad day because after the business of the week, there's some time and space to be sad. I don't know whether that's a good or bad thing but we have something planned for Sunday so that won't be sad too.

funny how the circle is a wheel

- Yesterday was sunny, a good day and we changed the cd in the car from a REM compilation, seeing as we'd listened to it all the way through maybe three times, to Gene Clark American Dreams. I love this CD and yesterday it was perfect but today as I was pulling up Elizabeth Street the Full Circle Song comes on and almost immediately I started to lose it. I held back the tears enough to get home but as I turned the car off, the held back tears all came rushing out. What's the matter? Gerard asked.* It's just not fair, I said, it's just not fair. We learnt on Friday afternoon that Mum's lung cancer has returned, with some spots on her brain. She starts chemo this week. Having barely recovered form the last treatment. I thought her initial result was so good that she would have longer, but apparently this is not to be. I'm sad that the cancer has come back so soon, sad that I won't be able to help her out or visit if she goes to hospital like last time. There's no way I can trot out the door and leave Gerard to keep the home fires burning (he nearly gassed the two of us the other day with the oven but that's another story). My life is just not like that any more.

On Saturday I went out bed shopping with Dad and we had lunch at MacDonalds with coke zero and surrounded by families and young people we talked about stuff, about family, about what is happening. And it was nice to be out with Dad, but Sunday, well Sunday was way different. I woke up with an unexplainable headache and lay in bed trying to think it all through and I couldn't. I either had a sensation in my head a bit like pop rocks, you know the kid's popping candy or there was nothing. Nothing but vacant space. Later neighbour friends came for a visit and weeded our vegetable patch and it was good to get an infusion of normal life. We are lucky to have good people around, good people who want to help. Sometimes it feels like there is nothing anyone could do to help, but that's not true. Someone is taking Gerard for a walk as I write as my ankle is still playing up. I put it out there and here it is. And has been all week. And there are other people in our family who can look after Mum. I'm still sad it isn't me. Not that I want there to be a need for looking after, but you know what I mean.

And I do think that two cancers in the family at once is grossly unfair. But what can you do? People say I am handling things well and maybe on the outside I am, but inside it is all pop rocks and vacant space. It helps a bit to write about it, which is guess what brings me back here. I keep thinking that I will write about craft or cooking because believe it or not there is still craft and cooking in my life.

Funny how the circle turns around
First you're up and then you're down again
Though the circle takes what it may give
Each time around it makes it live again

Funny how the circle is a wheel
And it can steal someone who is a friend
Funny how the circle takes your flight
And if it's right, it brings it back again

Funny how the circle turns around
You think you're lost and then you're found again
Though you always look for what you know
Each time around it's something new again

Published by
Lyrics © Warner/Chappell Music, Inc., Universal Music Publishing Group

* If you are wondering why he would ask this question, on days he feels well, Gerard doesn't really think he is sick at all, much less that it might be serious. Short term memory issues, a blessing and a frustration sometimes.

I don't think I have any room in my heart for any more sadness

Waiting, not an emergency but a concern

So sad. After dinner we watched some tv together, starting with What Really Happens in Bali, which made me think, why do people get that drunk? Are they complete idiots? Then Gerard put the news on. I could barely watch it, I don't think I have any room in my heart for any more sadness. But watch it I did. The toys and books on what looks like a wheat field, the armed soldiers. And then Gaza, all those people running, leaving their homes, getting hurt and dying. Faark. Humans can be awesome but right at the moment it feels like stupidity and fear are winning.

We spent about 5 hours in hospital at the emergency department today, which strangely made me feel like humans are awesome again. Hospitals are complicated and stressful but then so are the human bodies they are trying to fix. Gerard had a lot of leg pain last night and Grace woke me up this morning to say that he was having difficulty walking. It got better as the morning progressed but Gerard felt like it was something that should be checked out. Grace went to a friend's house (where she is always welcome, how nice is that?) and I took Gerard to the hospital via the service station because he noticed one of the tyres was really flat. So it turns out cars drive better with inflated tyres.The doctor thought that Gerard might have had a localised seizure in his leg or that the tumour might have been causing random pain, because apparently they can do that. Or it might have been something else entirely but as he is OK now, he is good to go.

Grace and I had another sad conversation today and I think she still feels a bit neglected. She could have come to the hospital with us today if she had wanted, but I don't think that is what she is after. I don't think she is used to seeing Gerard and I being together so much and not fighting. It's possible she hasn't really seen me be nice to him in the last 6 months. So this harmony is kind of weird. It's taken a while to get to this point but we are starting to work together and get on better, like the old days sort of. Which is good because are spending a lot, and I mean a lot, of time together. I'm trying to think of ways to make sure she is not feeling left out but I guess it's deeper than that. I'm scared about the future and I told her that. We had a cry together, she is pretty scared too. She wanted to know how long Dad has and the truth is we don't know, so that's what I said but she wanted to know more. So we did the chart, which is awful, and we discussed how Nana had done better than the median and that we had to hope that Dad would too. She wants the truth but it is hard. I talked some more about wanting to make each day as good as possible for all of us, but that sometimes Dad needs extra attention like today.

spinach pie

Tony in the last sun for the day. Working out the new schedule.

I made a killer spinach pie for dinner tonight. Only it wasn't spinach, it was silver beet from the garden. I took care to pick the best leaves and even washed off all the bugs and snails. And I included sautéed mushrooms and onion, to which I added the very finely chopped silver beet, and cooked it until all the water came off and it was much reduced in size. The chopping makes all the difference when you use silver beet otherwise the texture is inclined to be stringy. I started picking the greens and making the pie after Gerard's 5 o'clock medication and was able to have a rest and a vodka beverage along the way.

The rituals of family living; dinner at the table, family tv time, afternoon tea, walking to school when we can, lunch together, going to the supermarket, these are the things holding me, holding us together at the moment. After the last seizure (which I didn't write about here because, well too busy to write) Gerard has had trouble with his speech. I think it is called aphasia, he can think the thoughts but the words that come out don't always relate. Although I do think the relationship between words and thoughts is getting closer or maybe we are understanding him better. The doctor has said that Gerard's main tumour has changed and so he is having a break from radiotherapy pending an MRI. She said it was "concerning" but that they don't have enough information without the MRI to make sure the radiotherapy is targeted correctly. Everything felt very sharp yesterday and I cried every time I was on my own. I see people living every day normal lives with every day normal problems and I feel like tapping them on the shoulder and saying, this is the good bit, love each other, appreciate what you have. But I don't, of course. And I do think that people close to us know this and feel a bit of the fear, a bit of the vulnerability. Because this sort of stuff does happen to ordinary families like us. Hopefully not very often, but it does happen. And I do know of other families that have had big things happen. Maybe one day I am going to look back and this, these days now, they will be the good bit.

Ack, I'm tired. So tired. Even though I got a full night's sleep last night. More or less. I thought I would write about other things but maybe it's not in me right now. And I need some sort of record. I do. I really do.

wish we were here

Wishing we were here.

At the moment my instagram and bloglovin are full of other families spending the winter school holidays somewhere warm and tropical. So I look at the picture in waiting room for the radiation treatment and I wonder what they were thinking when they chose this particular picture. This part of the hospital is built into the side of the hill, there are no windows and it feels a bit like a modern and somewhat stylish Thunderbirds bunker. I'm sure there was good intention behind the backlit tropical beach scenery in three parts but it isn't peaceful, it's rage inducing. I nearly cried when I saw it for the second time today. Grace and I were meant to be going to Bali with my Dad and I was looking forward to it hugely. I spent hours on Tripadvisor and Youtube, including dodgy Bali horror stories and if I was a little fearful, it was only adding frisson to the excitement. Of course we couldn't still go, it's unthinkable really, but that picture on the wall totally undoes me.

Funnily, I don't feel the same way about friends holidays on Facebook or Instagram. I stalk their posts and wonder if we would go to the same places, looking to see what it was like. I'm pleased for them and even if I am saying, why isn't that us, I'm still happy that they're there. I fantasise about us being in Bali too, drinking fresh juices and having dinner cooked for us or going out to eat. I wonder if I would have braved the white water rapids and whether I could have persuaded Dad to go to the hot springs. Anyway when we do finally go, surely there will be someone else who has to stay home for some less than flash reason. Not that I want them to, but life as I am learning, can be a bit like that.

It was Gerard's second treatment today and his first in the regular time slot. It was funny being the new people. Other people in the waiting room were finishing up their treatment and many of them seemed to know each other. They were friendly enough and the waiting room is quite comfortable with a water tap, tea and coffee facilities, a jigsaw on the go, books and lots of different sorts of magazines. I guess I'll be spending a bit of time there. Waiting. Gerard said the treatment is a bit unbearable at the end but that it doesn't hurt. I spent my time knitting, I'm thinking I might finish the socks I started winter before last. I also glowered at the tropical beach scene.

winter solstice

Happy Solstice!


When I was doing one of those carefully worded, as in be truthful but don't overstep the mark, updates on Facebook I mentioned that we might have a solstice event. As usual, there was something else on and I forgot about it. Until I got a text and suddenly there was a perfect mini gathering assembled. It was a mild, slightly cloudy night, perfect for sitting around the burny barrel. There was a moment after getting the fire started, Neil Young on, drink in hand, waiting for everyone to arrive that was just so perfect. It was so still and harmonious.

Gerard has been home for a week now and it is great to have him home. Much better than the hospital, but it's also hard. There are so many things he isn't allowed to do. No driving, no power tools, no lawn mowing, no going anywhere without someone, not even just around the neighbourhood, no being at home by himself. His short term memory is improving in fits and starts, but sometimes I have to say something four times before it sinks in. Like when we were out on a family walk and he asked me where we were heading and I said to that line of trees, that's where the path is. And then three minutes later he asked me again. And so on. You would think that given he has a brain tumour, well two actually, that I would be bigger than all this. But you would be wrong. I am not. There was irritation, yelling and at one point, not this particular one but another one, I made the small child cry. Which turned out to be a blessing in disguise because it meant she let it all out and the real issues came to the surface. It would be better if it wasn't me being mean and rancid provoking this though. I have resolved to take two pills tonight. Hopefully sleep will make me a better person.

Anyway solstice eve was lovely. Gerard had the two beers he is permitted, maybe more. Well, I acted like a good partner with the beer and established with the hospital that it was ok for him to drink a little bit. He likes that and so do I. It seems more normal.There was lots of food and the children played nicely, only resorting to TV right at the end. Someone said that it was tradition to have solstice at our place and we did do it last year. I can't remember the year before. It was so very nice, sitting there watching the flames. Kind of like the life we had before. Maybe that will be the trick, to hold onto as many good bits as possible. To keep going. To keep living our lives as best we can.

things I am finding hard

Things I am finding hard:
Knowing which doctor does what.king and learning a bit but it is still a mystery.
Having a cold. I feel guilty for having a nap when there is so much to be done.

Brains are amazing. I mean you get to think about your brain with your brain. Today I learnt something really important about brains and memory. We were sitting at the kitchen table with the OT who visits gerard a couple of times a week. She is clearly passionate about brains. And memory. And the work she does. Which is good because we need passion and zest right now. However her news isn't good, there are no tricks or exercises you can do to improve your memory she says. Oh? No, I can teach you strategies and new ways of behaving that will make life easier and will compensate. But no, we can't fix the brain this way. So apparently the brain can heal by itself or as a result of biological treatment such as chemo or dex or surgery. But if you learn new routines and new ways to remember things, you can adapt, you can train the brain - that thing that is injured and the thing that you think with, you can teach it new tricks, you can teach it to use what it has. She had told us these things before but today I got it.

home again

Us this afternoon.Last week there were moments when the ground seemed to be slipping away and when I thought someone was going to slap me and say Janet, stop being such a drama queen, this is not your real life but I have checked with others and it is indeed my real life. I knew it was bad when two doctors, one of them quite senior, and a care coordinator arrived at Gerard's bedside and ushered us into a room last Friday. A quiet room with tissues. Actually I knew it was bad when I got a Facebook message on my phone Thursday before last to say that Gerard was behaving strangely at the supermarket, and when we arrived home and found him unconscious on the kitchen floor, when the MICA paramedic arrived within 10 minutes, when the three of us were in an ambulance speeding up Bell street and the ambo kept asking him questions and checking this and that, when they had a room ready for him at hospital, when he was scanned within 30 minutes and in a special ward within two hours. When the brain surgeon talked to us about the biopsy. Yet never have I been so grateful to live in a country with a well resourced medical system staffed by compassionate people who know what they are doing. Not once did anyone ask us if we could pay, the paper work was minimal, we were well looked after. Later there were some not so flash moments, but never when it really mattered.

So back to the room with the tissues. Gerard has two brain tumours, two different cancers. Each with their own doctor and medical team. One needs to be treated as soon as his biopsy has healed and the other needs to be closely monitored and will be treated later. The doctors are saying that given his age and health, it is well worth pursuing nine months of radiation therapy and chemo which Gerard will receive as an outpatient. He came home from hospital today and is pretty much himself despite some cognitive and memory issues. There was going to be a stint in the rehab hospital but it was decided that he would do better having the rehab at home. I was a bit stunned by the lack of notice, but hey he doesn't care that the house is dusty. It is home and not hospital. We are all together again.

I am coping on the outside but shattered on the inside. We are lucky to be surrounded by friends and family and are well supported. So slowly doing what needs to be done. There is a big list and we are being assessed for services starting on Monday. Grace has been told but I don't think it has quite sunk in yet. She is hanging onto her life. I'm OK with that.

the world starts young

There's this Ken Lay post about family violence doing the rounds of my Facebook. It's an excellent post, exactly the thing that we should be sharing and halfway through, he says something that knocks my socks off
I place family violence in a wider culture where vulgar and violent attitudes to women are common.........

Susie is 21. She's just finished uni exams and decides to head out for a night with friends.
Within the first two hours she's been groped twice.
The first from a leering drunk.
The second happens from behind, anonymously, as Susie's making her way through a crowd.
Susie feels a lot of things—saddened, humiliated and a little frightened.
But she's not surprised.

And this is what I thought of. My daughter has just turned nine. She's very tall and grown up looking for her age but the youngest of her cohort at school. This doesn't seem to bother her too much but she is hanging onto her childhood, she likes being a kid. Last year at school, I was present at a particularly chaotic assembly. There was no crowd control and there she was in the middle, in a line for something, being good. A boy from her class, who would have been nine or ten was standing behind her and licking her hair, or just far enough away from her hair that she wouldn't know what was happening. They were very big, very lewd licks. When he stopped, he looked directly at me and then kissed the boy standing next him on the mouth.

I was a bit gobsmacked and not at all sure how to re-act. The action the boy was doing to my daughter was clearly lewd and sexual in nature. Him looking at me so directly was puzzling, he knew I was her mother, he would have had have known that I would be upset by what I saw. Surely. Maybe not. He would have been ten so he was just a kid, but then again he wasn't four or five any more either. I wondered whether to tell Grace or not. I suspected she wouldn't like it but she probably wouldn't like that sort of activity behind her back either. So I told her. With all the gory details, the hair licking, the mum looking and the boy kissing. Her response - eeeeewwwwww, gross. She was quite upset and quite upset that it had happened behind her back. Amongst the girls there have occasionally been issues about having to show your bottom (ie vulva) before you can play a game. I have always been very clear, if you want to show your bottom to another child, that's fine, it's yours and up to you but you never have to if you don't want to. Ever. The mums cleared that one up.

This issue with the hair licking was different. There was no opportunity to say yes or no. So total absence of consent. If they had both decided they wanted to play some hair licking game, I probably would have said assembly was an inappropriate place to be doing that and I might have had something to say about her choice of playmate, but ultimately, consensual hair licking between and eight and ten year old, I might not have liked it but I wouldn't have thought it was particularly my business.

new school, old school

Last week Grace had her first two days at her new school. The culmination of much angst, five school tours and two trial/transition days. It's been a process but, you know, I'm really really glad we did it. I'm sure that things will be less than perfect. There are already comparisons between the new school and the old school. The playground is much smaller, the class rooms are smaller and have more children with less air conditioning on a hot day. The commute by bike is longer, although I am marking that as a positive. However the thing that overrides it all is that at the end of the day we are getting a happy Grace. One who is prepared to talk about her day.
Really excited about Grace's first day at her new school! There were so many things we (G and me) didn't like about the old school. We had become really bitter. I'm still bitter and angry. About the asbestos working bee, about the attitudes towards the parents who were concerned about exposing themselves and their children to asbestos dust, the shouting teacher who drank coke throughout the day in full view of the children, the three hours a day of iPads that we weren't allowed to have any say about, the toxic stuff between the parents and the way you couldn't talk about a problem and try to work towards a solution without being called a whinger. But what upset me most, what became the final straw was something that came to light after Grace's first trial day at another school. When I asked her about her day on the train home, she said, Mum it was great! I had someone to play with all lunch time. Fark. How come I didn't know this? We talked about it quite a bit over the next week or so and it turned out she had been shuffling around the playground by herself for ages. Not every lunch time but enough for it to be significant. She still had after school play dates that worked well but lunch time was often lonely. We kept talking and within two weeks she had worked out a solution and paired up with another girl who was escaping the lunch time issue by playing with the preps. And then they started games that other girls joined in. There were some other girls (or one particular girl) they weren't allowed to join but on the whole it was a win. I was furious, why didn't the school let me know this was happening? Did they not notice or did they not think it was any of their concern? Or maybe none of my concern? We could have avoided months and months of silent, hidden misery.

Anyway with the new school, so far so good. Grace has made a new friend and is starting to get to know people. The uniform is a polyester shocker but you don't have to wear it if you don't want to. The vibe at pick up and drop off is friendly. Lots of kids Grace went to childcare with. Some parents we know from round about. I am beginning to feel a great big weight slide from my shoulders.

ps Grace, I'm sorry if I have shared too much but I am so glad you are having a happier time at school.

Last September's Queensland trip

Was going to blog about our recent camping trip but blogging and dealing with my photos are closely linked. And I had to process the photos from our Queensland trip etc before I could do the holidays.  Anyway. I remember really wanting to go to Queensland  to see my sister. Really, really wanting to go. And feeling like we just couldn't afford it. Especially during school holidays. But I worked out that if we flew Tiger to Brisbane and caught the train, it was doable. Then I got sick and spiralled into despair and  the doctor thought I might have whooping cough. It turns out I didn't but I had to pay money to change the day we were flying. I didn't want to even though it was still cheaper. But I couldn't bear the idea of infecting some kid whose parents didn't believe in immunisation, or some baby who was too young to be immunised. We managed to get out of the house and get to the airport really early for a big day of commuting. The sunshine in Brisbane was remarkable and we felt like old hands catching the train. Betty and the girls met us at Nambour station and it felt really good. It was really, really good to get there.
- -
I can't remember much about the holiday except that I wasn't as depressed. It was the first time we stayed in the new house built largely by my sister's partner, Cam. We went to the beach and we talked a lot which was great but also a bit intense. Three cousins together ranging in ages for four to eight is also intense. Lovely most of the time but there were the inevitable melt downs all around. I'm used to one child having a moment not several. I tried not to show it but I might have been a tad freaked out at times. We bought pineapples and mangoes. I read a book. Kate Atkinson, Case Histories if I remember correctly. I liked it a lot and have since read Life after Life. Must see if the library have more. I ate/drunk less sugar only to revert to form once I got home, although we have given up orange juice as a regular thing. On returning to Melbourne I fell in a heap again and I'm still trying to make sense of why and what happened. Maybe I don't need to know and should just move forward, you know onwards and upwards. - -

on turning fifty

When I was thinking about all the things that happened since last September, turning fifty is one of the most significant, one of the most awkward. I know we are meant to celebrate significant birthdays but I found turning fifty to be such an utter mind fuck that I just couldn't. I wasn't ready. Fifty is an age that happens to other people.

I think I might blog today

It's been a while. Four months in fact. Do I try and catch up? Or maybe just blurt out the highlights/lowlights? There aren't any proper photos either, my photo taking mojo seems to have gone the same way as my blogging/writing mojo. So much so that I couldn't make the annual Christmas calendar this year. But perhaps that was just well because really the best thing I can say about Christmas is that it will get better from here on. Suffice to say we will not be having my mum and dad and their spouses at joint Christmases any more. It was a change I thought we could make from next year but I spoke too soon and suddenly it all shifted without any way back. My Christmas day went from turning up with a pavlova and some cherries to shopping and cooking for two events. A couple of people were quite upset and Grace actually told me that I "broke Christmas". Despite all the kerfuffle though, it was better. But perhaps it would have been even more better if the change had not been made the week before Christmas and people could have a) had some time to get used to the new plan and b) not felt they had no say in it. Anyway, it was actually quite a lot better and I overcompensated with presents for Grace. Even if Gerard had to wrap them for me because I was making White Christmas.
Xmas time is here again. This years's recurrent family Christmas shit cycle took place against another really crappy bout of depression. It's been rolling up and down ever since September when I got that horrible flu. Sometimes I think I just need something to start me off, add some life circumstances, stir in some defective brain chemistry and voila, perfect storm. This period of depression, which my psychiatrist won't give me antidepressants for because she thinks it is to do with my life rather than any bi-polar brain chemistry, has made doing anything really difficult. Mornings are a bugger. I don't want to socialise. Or eat. Or exercise. Or take photos. Or anything really. Which makes it worse. So I have been trying to do things. But yeah, bummer.

I did manage to scrape myself off the floor to book and attend a Christmas craft market, four weeks in a row. With a another little market tucked in the middle. Didn't make enough money to flee the country but I covered some bills and my Christmas shopping. And I enjoyed finding out what people like to buy, and touch. The sewing was crazy but fun and think I will keep doing it on and off through the year. My head is full of new plans for toys and products and although I can see that what I am doing at the moment doesn't pay a great hourly rate, it does keep me out of trouble and I think you have to be doing stuff to discover what the next step is. Also made a WordPress website for a friend's business and I think she got a pretty good, responsive website that suits her needs at a reasonable price. Once again, I learnt a lot. There's still some more behind the scenes work to do there but as Gerard says, it's a cheap and practical way to learn a lot. Hopefully this year, I'll get around to making some business websites for myself and find a couple more that I can do for other people.Oh, and I have some more of the boring but well paid by the hour work coming up. And Gerard seems to be getting a fair bit of work about the place too. So I'm not at all worried that we will starve. Or have to subsist on just lentils and rice. Actually I think this year might even be reasonably good for us on the work front.
Gerard has been busy too. Mum has finished her cancer treatment and it has been astoundingly successful. There is no sign of any cancer remaining and apparently only a small percentage of people have a result this good. I am very happy about that, but there is no saying how long the remission might be, two years, ten years, twenty years - there is just no knowing. I do wish however that she would actually give up smoking. Seems like such a good idea, especially if you have had lung cancer. But oh well, what can you do?

Grace will be going to a new school this year. It's good to have finally made a decision but there is of course some anxiety about it not working out. I'm looking forward to drop offs and pick ups where people don't avert their gaze or suddenly become engaged in their mobile phone when you walk past. We still have our little circle of friends at the old school but really, there are quite a few people who would rather not know us. A WorkSafe investigation that resulted in this article, has a lot to do with that. Still we are not the only family leaving. Anyway we are looking forward to a school with  few more girls, a school run library that they take seriously, a language program and no fricking iPads. Grace is not really looking forward to the last one but it bothered her less than we expected on her transition day.

I could probably go on but I need to cook dinner. Maybe I can find some more to write about soon. Hopefully if I keep writing it will become a bit more upbeat. I would like that. So how are you?