After Chemo

Every morning I open the vertical blinds out to the patio and open the glass door then the screen door and go out to check what little things have sprouted. I said fungi would be first thing in my new life, and so it has so far been.

I take their photos: caps, stems, undersides, the way the gills attach to the stem, the pattern of their gills, is there or is there not detritus from a partial veil on their caps, what color is the cap, what color is the center? I note a few more things for future reference.

These may be in the Coprinopsis genus
These may be of the Parasola genus

All of them are tiny and really to make good photos I’ll need some equipment superior to what I have. An older model mobile phone with a 50% success rate where the photo is sharp enough to enlarge for extra detail. Just like the older model operator whose eyesight is not as sharp as it was, but whose eye for detail still works very well.

After breakfast and a couple of chores I may sit down at my laptop and do online fungi IDing on the various FB fungi groups I’m a member of, or I may submit a few more fungi observations to https://inaturalist.ala.org.au

Some days … when my state of being doesn’t allow me any running around … that’s all I do. Like today. Have to keep reminding myself, need to crawl before I can walk.

Part 1, Fungi

A recurring part of my new life will be fungi. Even though I can’t get out into the field as yet … am stuck photographing whatever comes up in plant pots … I’m spending the majority of every day traversing the four FB fungi groups I belong to, and now also adding old data to my account at iNaturalist.org

Hygrocybe astatogala

Life After Chemo …

The tile which, after suffering an unfortunate accident, nevertheless became a work of art

Today someone asked me if I could see my life lining up after chemo. It stopped me in my tracks.

I’ve been living in the moment of having cancer and having it treated for so long that plans about what to do afterwards are not on my horizon.

Should they be? I’ve gotten out of the habit of making plans. After all, it wasn’t just cancer that hit me. There’s COVID too that hit the whole world. Does anybody now think they know what is around the corner?

— — — —

But let me tell you what happened with that tile.

I was learning to paint with ceramics at the time. My next big project was going to be a 30 cm square tile using all the techniques of applying texture available to me. I’d gotten as far as recessing the sky areas by patient scraping and sanding with the scrubber part of the dish-washing sponge. The applying the three coats of sky blue. In the foreground I’d started the stylized bamboo, and the carving-in of various landforms.

Un-kilned tiles (referred to as green ware) are extremely fragile. I decided to leave it at the workshop for my next class the following week for that reason. Nobody knows how it happened, just that sometime during the week the tile broke.

The pebble insert above was my first idea for saving it. The rest of the class, Carmel, Carole, Sue and several others all made suggestions. If I was to have a band of pebbles, I’d first need to saw off part of the existing bits, top and bottom, then stick the middle two bits on another tile, kiln the whole assembly, and finally glue the pebbles in.

I didn’t like it. No elegance in it. There had to be a better solution, I thought. I took the tile home for the four-week interim around Christmas and New Year and studied it often.

Finally, I realized that the only way to camouflage a break so definitive would be to have more breaks. More pieces.

Did that. Very satisfying. Ended up with about eleven pieces. Was able to highlight a different technique on each of them. I use it as a puzzle. Lend it to people and they call me in the night to ask which piece goes where.

— — — —

I think that this puzzling-together of the pieces I am left with after my life broke is probably going to be the way into a new way of being. There will be no lining up of the pieces. How can there be?

I’ve got old bits that need upgrading … my writing and my painting … friends from then, and family, to convince that my new way of being is how I’ll need to be.

New bits … the amount of attention I now need to give to my health … new friends to make and maintain … my grandchildren now within reach to nurture … a new way of gardening to learn …

More new things than old things possibly, and all of them having to fit into a narrower borrowed time.


Magnetic Resonance Imaging

While the beast illustrated here was once what a newspaper printer looked like, being in the Magnetic Resonance Imager today felt just like this looks like. The whole event was as near to a first hand nuts and bolts steampunk experience that I will want to experience.

fineartamerica.com

Imagine lying on a stretcher bed inside a machine like this in essence, being told to take deep breath and hold it. Dozens of times. Each episode you’ll hear a clickety-clacking, high pitched whistling, rumbles, moans and groans, cracking and creaking; each soundscape in sets of six to nine instances.

At the same time you’ll feel waves of heat traveling down the presumably steel stretcher you’re lying on that’s sliding slowly in and out of the MRI donut. The ghostly voice in your ears and the SOS squeeze bulb in your right hand are your only contacts with reality.

At the end, one of the staff said quite matter of factly that they don’t have many fans. First thing I would do is modernize the monster and cut back the high decibel sound effects. I doubt that my hearing improved.

End Times: Societal Collapse

Volcano, Watercolour by Rita de Heer

Yes. Pretty serious title. It’s the mood I’m in. After a twelve week euphoria about still being alive, first in hospital and then for six weeks in a respite community, learning to be a normal person again, the other day I got back to reading some of my favorite commentators on the state of the world.

Michael Mobbs, of Sustainable House fame, writing a Spinifex column in Fifth Estate, told the story of how he looked for a bolt-hole for when what’s coming arrives … this is the end time we’re talking about. The societal collapse. He’s convinced we have no more than ten years!

He couldn’t find a good bolt-hole. The whole east coast of Australia was burned in the 2019 bush fires and most of the creeks he looked at were either dry or running at about ten percent of what they once were. There’s no safety, or security in the bush. He went home, back to the city, where he’s thrown himself into food gardening, and modelling that.

Me? I was in shock. Here I am … went my thinking … going through the gnarliest treatment on Earth in the hope that I last ten more years and see my grandchildren on the way to growing up, and my society is going to fall over around my ears? Ending is such a final thing.

I’m aware of course that the average length of time for surviving cancer is five years, and I aim to step off my mortal coil with grace when the time comes. But only if I’ve given my descendants the best possible chance at surviving what’s coming.

In my mind I ran around like a Henny-Penny complaining about the sky falling in, me trying to think of solutions. Imagining how I’m going to spend the next five years.

Some time later I remembered that I’d known the 2030 deadline already. That I had accepted it already and had become nihilistic in my attitudes toward the end-time events, being a long-time environmentalist …

——

The above was all written a few weeks ago. Treatment is on-going. I feel sicker and less able to get involved in any damn thing with every turn of the cycle. Two to go. Maybe in six weeks … two more chemos, one more lumbar puncture with chemo … and when I’ve been able to address the near constant oral thrush in my mouth … I’ll be able to think again.Maybe then I can get excited again.

Too tired right now.

Cancer is the New Go …

From living here …

My life couldn’t have changed more in the two months since I posted last.

It started with a respiratory infection. In May. GP sent me for my first COVID test (negative) and then sent me home to sweat it out. Three weeks later, I was still coughing and I agreed to a tele-conference. The Doc heard me coughing and prescribed asthma medicines. He was of the opinion that my asthma had been “turned on” by the bushfires earlier in the year, and was now being exacerbated by wood smoke from cosy winter fires.

Six weeks of serious coughing ensued. The Doc asked me to count the average number of times I coughed during a minute–which was six times when the bout was particularly fierce. And how many hours per bout. Some days that would be six or seven hours. Another tele-conference and two live appointments, different medicines and different regimes of when to take them didn’t throw any light on the matter. Because, since my lungs were clear, it had to be asthma.

In the first week of September, maybe, I decided in my dull, sick state of mind I should get a second opinion. To be able to have my blood tested–I had to go for another COVID test as local clinics refused clients with any symptoms of COVID. My second-opinion doctor rang me as soon as he had the results on his computer, on a Sunday, and convinced me to come into the surgery the next day on Monday 14th September.

“Your blood doesn’t look very good,” he said. “Anemia and probably malnutrition are only two of your problems.” He organized for me to be admitted to hospital in Queensland. A friend drove me–the border crossing was a mess of detours and a long conference with the police charged with keeping the border safe.

In hospital I was required to be quarantined for a fortnight and COVID tested, again. Ten of those days were taken up with all the tests medical expertise could put me through. Plus blood transfusions to address the anemia, a platelet transfusion, oxygen (which finally stopped the coughing), lots of good food. I swear I ate red meat at every meal.

It wasn’t until the PET scan that my hematologist got a hint. An inconclusive lung biopsy was next–other than I definitely had a lymphoma. The results had to be sent to the state medical review board for confirmation.

What I’m sick with is called Intravascular diffuse large B cell lymphoma. Also known as Intravascular DLBCL. It’s rare and largely unknown how well chemo will work.

My second-opinion doctor saved my life for the present.

Food: Back to testing ingredients

One of my successful low-FODMAP lunches … two pieces of GF toast, 2 pieces dried tomato and maybe a couple of half-olives, tofu, sprinkled with black sesame seeds. Lettuce for a green and water to drink

Almost 2 months after I had the flu which last three weeks as far as I can tell, I’m still coughing due–my doctor said to an asthma flare-up. He puts it down to wood-smoke in the air and a new allergy. He prescribed an antihistamine and expected me to get better forthwith. When that didn’t happen but I’d have an all day coughing fit if and when I went outside, I bought an air purifier for in the house. It’s hard to tell if it’s making a difference, except when I stick my nose outside.

My nearest and dearest people are getting sick of the constant news, no I’m not better yet. Yes I’m still coughing. My son reminded me last call that I’ve been coughing for as long as my new grand-daughter has been in the world. A couple of days ago I researched the malady again–you get like that when you get no resolution from the medical profession. This time I discovered that a tenacious flare-up is a possible after-effect of catching the flu if you are also an asthma sufferer.

No, it wasn’t a wonky website. I think it was the Mayo Clinic. If not that one, something equally as dependable.

While it didn’t give me any hope for when I might hope to be rid of the flare-up, it did give me a bit of comfort that it exists, and people do get well again. Fingers crossed. Next, I researched inflammation. Inevitably, food intolerance came up. The wrong foods for a person can cause a lot of inflammation in their gut, and when your gut goes into a leaky-gut-syndrome, the inflammatory compounds will cross the gut wall and be carried all over the place by your blood.

All this is happening while I’m trialing the fortnightly fruit and veg boxes, with me trying out all sorts of foods I’m not accustomed to. Like the spring onions today, of which I am allowed to have 75 grams a day according to the low FODMAP diet app I have on my mobile. After six years on the diet, it’s gotten a bit onerous to be measuring every mouthful and I’ve let it go a bit. Today, though, after spring onion on my delicious lunch, I had a bad coughing fit.

So I’m back in testing mode. I’ve already cut out black currants for breakfast, of which I’m allowed 13 grams–not worth the bother if it’s going to cause me to cough for hours after breakfast. Tomorrow, no spring onions on my lunch, see how I go.

Transport

This one, yes, this one I would really like … it’s an EV of course … built in 1918 by I think it was Millard

My car is yet again incapacitated. I didn’t drive it enough through my illness and the battery is flat once more. The poor NRMA guys have been to my place at least three times already this year and I’m wondering why I still have a car with an internal combustion engine.

If I had an electric car I could just plug in the power cord and charge it up. Problem solved. It isn’t as though I don’t have enough electricity.

I started to research that today. New EV cars cost an arm and a leg. I’ve never spent more than 20k on a car even when I was still working. Second hand EV cars are as scarce as hens’ teeth in Australia. New Zealand has enough sense to import them from Japan, but Australia is a Johnny-come-lately, still wanting to run the world on coal, oil and gas fracking.

Then I plugged ‘lightweight EV vehicles’ into Google. It came up with the goods, of a sort, but I can’t imagine riding 10 kilometers along a narrow secondary road–two lanes only with a shoulder meant for single file bicycle riders–up a steep hill and down it again on the other side to Brunswick Heads, for example, on something that looks like an electric wheel chair.

I’m not old enough. I’m not a daredevil. I’m not stupid, we get rain here sometimes. and the new bike path is still a long time off. Maybe another ten years, when I have gone into my feisty years.

Food Adventures

My food adventures are nothing like anything you could post to Instagram or any other site lauding the expertise of both cooking and photography.

Sludge gone chewy

My food adventures this year are the result of how COVID19 is keeping me indoors with my two co-morbidities–heart problems and asthma, with my asthma in a long enduring state of aggressive flare-up supposedly due to wood-smoke in the local air–and the resulting difficulties of getting food into the house.

Friends help and recently I’ve begun to order in a fruit-and-veg box fortnightly. All good, one would think. But I’m lacking quite a lot of groceries out of my normal diet. Canned fish. Any kind of fish. Tofu. Tempeh. Olives. Rice milk. Tomato paste. Olive oil. Oil to fry with. Coconut yoghurt.

Food additives are my curse. My gut forces me to commit to the low FODMAP diet and so I need to go down to the shops and read labels. All the above need reading. But I’m still coughing too much for a trip into the supermarket.

More doctor appointments needed. Why haven’t I seen a specialist yet? The state border between us in Northern New South Wales and South East Queensland where all the specialists live, is closed. I mean, did you hear about the sick baby that was airlifted from NSW? The parents had to by road and were denied entry. They were directed to a fortnight’s quarantine at their own expense. Can you imagine?

It’s all too stressful.

So …. when I order a bag of brown rice with ancient grains–and am not able to read the label because the way the product is presented on the website–there’s nothing for it when it arrives but to experiment. [Should’ve read the label when it arrived!]

It’s rice. I cook it the way I cook all rice. Never had a failure. A student from Malaysia taught me when we were both marooned at Waikato Uni (NZ) for the holidays a long time ago.

This time, three-quarters of the mess in the pot is half raw while a few rice grains have made it to the desired density. I study that for a while and decide there is no way I’m going to be able to separate the half-raw from the cooked. I add more water and more heat.

The result is sludge. In the days when my son still lived at home this might’ve been the point where I would accept defeat and traipse the mess out to the worm farm.

But last week I decided I didn’t want to waste my money–ten dollars for the bag–and would continue experimenting. That night, planning for dinner, I extracted three tablespoons of the sludge–pot kept in the fridge to prevent it going to beer mash–added three tablespoons of a chewy, low FODMAP flour, two spoons of curry powder, salt, bit of baking powder and an egg and stirred it all about.

Looked all right. I set it cooking in a heating frying pan, like a big pancake and topped it with tomatoes, broccoli, cooked carrot and a couple of chopped spinach leaves. Flipped it when the baking powder told me, and hey presto.

Nice meal. Enjoyed it. A couple of hours later lots of complaints by my gut. Why, I said? I gave you everything according to the diet?

Next day I thought I would try a breakfasty thing. Two tablespoons of the mash in a mug. Cocoa to taste. Brown sugar. Two tablespoons buckwheat flour. Rice-milk to help amalgamate it all. Pinch of baking powder. Three minutes in the microwave.

A very tasty and and different kind of breakfast. Ate it with a teaspoon. Debated whether to write the recipe on paper to slip into my favorite low FODMAP cookbook for future reference. More gut complaints. I put them down to the one-eighth apple I had been eating every day.

Third day. I studied the mash and thought it probably would be reaching its use-by date pretty soon. But I decided to have a go at making bread with it. A hot oven kills off all kinds of wild-life, right? The yeast mixture bubbled nicely. I drained four tablespoons of the mash thinking to use it to replace one of the two flours used in the recipe. Added the yeast mixture, and the second of the two flours. I used to love making bread in the days when my gut wasn’t the pernicketey animal that it is now.

The ‘dough’ wasn’t like any that I’d ever associated with successful bread-making before. More like a stiffish batter. Too far into the process, I pressed on. Turned the stuff into a bread pan. Topped the loaf with sunflower seeds and pepitas. Set it to rise on the stove. No rising. Set it to rise in the preheating oven. Then thought I might as well bake it. Upped the heat.

The seeds helped to form a nice crust. I ate that. The innards were not edible. Sludge gone chewy. For a while I played with the idea of frying pieces of it… frying improves a lot of foods. It’s the times I was raised. A good fry-up remains one of my favorite meals. But why was this stuff so obdurate?

Next morning, I read the label. Picked out the baddie at once. Lupins. A high FODMAP food. I decided on a trip into the backyard there and then. Mash gone. Chewy sludge gone. The rest of the packet of Ancient Grains, gone.