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


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.