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.