“Living dyingly”

That’s what Christopher Hitchens called it as he lived with throat cancer http://www.smh.com.au/lifestyle/celebrity/christopher-hitchens-dead-20111216-1oyc4.html.

I wondered whether it was dying livingly instead.  In which case, the phrase applies to everyone. It does feel weird to be constantly on the border as it were. It’s surreal to get up in the middle of the night and see one’s self in the mirror and to find oneself asking if this is what dying looks like?

I always fancied myself as a “hedge witch” as Terry Pratchett describes people who work on the fringes of realities, but I’m not sure I like being a  walking reminder of mortality.

Which all goes to the happenings this week, since I last posted. My friend Karen comforted me by saying that I was probably having a couch week, which is apparently well documented in accounts of early chemo experience. It was a couch week for sure. Going in to have the Ct scan on Monday with it’s good news was very hard . I could barely put one foot in front of another when Pat  and I went to that lovely cafe opposite Mitchell Park for coffee, between the scan and the consult. I couldn’t face coffee which was very disturbing. I managed an hour of shopping, and the two hours getting to and talking to the psychologist on Tuesday, though I worked hard to get up the stairs. Wednesday I was a wreck, with cramps, nausea, constipation and the scariest of all the ‘sulphur burps’. (Excuse the graphic details but I did warn you with the title of this post!) I’ve worked out that the burps are part of the chemo general build up of gasses. They become sulphurous when the tummy isn’t processing food fast enough and stuff in there starts fermenting. It made me feel like I was breathing death,which is certainly in the antisocial category of human behaviour.

Needless to say I didn’t want to inflict myself on others (Pat is the hero here) and I didn’t want to eat – not even Ensure or juices – fruit juice or anything sweet like carrots or beetroot just made me feel sick. Probably because sugars contribute to fermentation! So I pretty much didn’t eat for 3 days, and was totally surprised to find that I couldn’t walk to the gate. Strange that!Rocky and Pepper were extremely solicitous with one or another of them practically sitting on my feet throughout. Rocky gets night duty it seems, because he goes to school and gets a break in between. Must ask Cindy if he’s sleeping more at school!

I confess that there were moments when I wished it were over with the least amount of worry, trauma and unpleasant bodily fluids to deal with. My heart wanted to be able to go for lunch with the TES crew on Thursday, but even if someone had fetched me, sitting up was an effort. I put my breaking out of this down to Sharon B visiting on Thursday with the lovely goodie bag that the Cowies Hill Run Walk for Life team put together for me. Liz B was I believe, the creator of the very lovely cushioned lap table. And the nuts and dried fruit became appealing on Friday. Just talking to Sharon made me feel again like I could connect again to the real world and get outside watching every bubble and burble that my body was making. (By this stage I’d decided to take a probiotic and Buscupan for the cramps -thanks to advice from Anisha, the onco sister – which led to extreme diarrhoea). Who knew that a general painkiller like Genpayne doesn’t address gas induced stomach pain, and in fact makes it worse?

The one goal in my mind was to get to the PaperHeaDs Christmas breakfast. On Thursday night I was thinking of crying off if my legs were still so wobbly. But lo! I had suddenly an appetite enough to eat a cup of potato and leak cupasoup and half a piece of toast. The relief in Pat’s eyes made me want to cry. What we’ve learned is that we need to have little tubs of frozen soups ready for these times where sweet,acidic, difficult to process grub is not an option.

And so it was that Pat and I sallied forth to the Freedom Cafe yesterday morning, in sunshine and light, to a morning of laughing and talking about anything andeverything’s in a lovely space. I can’t express how much I owe to this amazing group of scholars and strong women – my PhD, and understanding of what care means are just two. Paulette’s framed picture of our wedding day, Ruth’s beautiful and hand made crackers and carefully chosen books, Nicky’s thoughtful and community aware scarf in a tin, the book exchanges are a artefacts of a much deeper caring.

Most exciting for me, was being able and willing to wrap myself around a plate of organic scrambled eggs, mushrooms and sour dough bread. I’m pretty sensitive to salt at the moment and often find bought food too salty, but this was perfect.

It’s true that I was very tired when we got home, and that we both slept for two hours,a difference  to the spirits?! Dinner last night was a couple of sips of ” Spicy Hot ” v8 veggie juice – we decided that the Tabasco in it might bedangerous. Pity because without the pepper it would be the perfect end to a day of balancing food nutrients. I had freshlyjuiced apples and a piece of Andrea’s delicious homemade Christmas cake gift.

This morning you see me, happy that my legs can make it to the gate, enriched by an hour long conversation on Skype with Sam and Hamish on Kangaroo Island, South Australia ( yay iPad!) and ready to set forth to buy a new pressure cooker.

Literally, we’re out of the shadow for the moment and Living. As Hitchens put it, one of the downers of cancer/treatment is becoming “self-involved and solipsistic”. Writing helps. It’s a new day.