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


Songwriters
GORDON, CHRISTOPHER JOHN (AUS) / DAVIES, IVA / TOGNETTI, RICHARD LEO
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!

Dinner

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.

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.

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.