Sunday, March 4, 2012: 1611
Feel it is high time I wrote something but I have precious little to add. Have been waiting to feel better but have given up hope of that happening for a while. It's been about five weeks of barely existing. Not being able to talk was incredibly frustrating at first but it is amazing what one can learn to live with. Admitting powerlessness and letting so much go. My notebook has many entries. Most lines of conversation can be ignored. A look can convey much. Charade communication is improving and can be entertaining.
Last time I blogged I was probably at my most toxic. Chucking back at least a dozen drugs daily, mainly combatting nausea and pain. Ended up unable to take Soluble Panadol. Chucking up water had me somewhat alarmed a month ago. Fortunately I was able to swap the preferred 24x7 pain relief I had o-deed on for an increase in morphine. It is all relative, pain, discomfort, life, pleasure, ease. I have also abandoned all tablets as nausea seems to have considerably abated. The non-stop issue of the strangulating saliva slime is most hideous in the morning till about noon. Gunk, preferably clear, is a better sign of health than the totally parched dry mouth I am contending with at the moment, according to Siddhartha, my radiation doctor. I wonder if, when, my saliva will return to useful, bearable proportions. I surfed the net about a month ago foolishly seeking some answers on my predicament, finding a throat cancer survivors chat circle about 3 years old. Some participants wrote of still gagging on the yellow crap two years post treatment. All had been reduced to the nose feeding tube. Many had major problems swallowing solid food. It was not a cheery read. I have tried to rationalize it saying that they were some outcomes, several years ago, hopefully matters are far more improved now. But it is best not to venture down that track. What is, is what is happening today, to me. Comparing my experience with others is not particularly helpful.
I have managed to read a couple of books. Jean Rhys, early feminist writings from pre World War 1. Another world, another woman's hard time, a welcome distraction. I have thought about finishing a jacket I started knitting last year but have yet to raise a needle.
10AR has practically joined another family. One of her school mates, with two older sisters, a house, a Blue Russian kitten, a cute dog, a garden and a pool. All in all, a far more attractive abode than our little unit overlooking the sea. Even her own cat struggles to get a look in. Nevertheless, despite the kitchen being a no go zone for me, I have encouraged her to fend for herself in the meals department. So far she has had a week of hot dogs, currently being followed by a week of home-made pizzas. She can, of course, cook spaghetti and rice, so I am confident she won't starve. The popcorn maker, she scored for her birthday, has hardly had a day idle. Her DVD player has been significantly removed while her school work is haphazard despite my wilted efforts. School Disco played havoc last week, her head was definitely elsewhere and usually her body along with it. Her inability to tell the truth is our current running sore. Though we shared a lovely afternoon of watching ridiculous cat antics on U-tube today. She has an occasionally sprained right wrist depending on what the occasion is. Completing a chore or playing a game.
I had my first post treatment check-up by a triad of doctors on Wednesday morning. They took it in turns to poke around in my mouth. The first, a junior registrar, was trying hard not to lose his cool with me. In somewhat exasperated tones he admitted he was at risk of falling off his chair if I didn't lean closer towards him and open my mouth "WIDE".
"Ow!" As if I wanted to willingly submit myself to the lion's den. The young un's sensitive gropings, which even included a head and neck massage, were followed by Sid, in large rubber gloves having a good look and feel.
"All clear, as far I can tell" he said. "Early days. Your soft palate is smooth again, no signs of the cancer. Plenty of slough, though, dead skin. The mouth is definitely healing."
Then Dr Brutal joined us, making me gag with his rough forays into my oral cavity. The nasty nose camera was presented. He was intent on shoving it up my nasal passages again without so much as a passing wave to the anaesthetic.
"It's all placebo anyway," he said.
His hasty early shoves reduced to me to wails, Sid, a comforting hand on one shoulder, registrar cowering near the door, wishing he was anywhere else, Michael sprinting down the corridor, claiming he could hear my sobs from the bathroom.
"Have you done it yet?" he asked on seeing the hated implement.
"Haven't started," the three said in unison.
"I see," Michael muttered.
"I can let it go till your appointment next month when your mouth is less sensitive," Dr Brutal backed down. "Won't be able to see if there is cancer present behind the soft palate but it will be a clearer picture next time anyhow."
Round One to me. I took my ulcer-ridden mouth down the hall to freeze in the nutritionist's office.
"You've lost another 3 kilos, down to 58.9. Must try to increase your intake of Sustagen, ice-cream, custard, soup, whatever, or I will have to put you on a nose feeding tube. You will lose the muscles to swallow. Your heart and lungs will collapse ..."
Total horror story. Get me out of here. I'm frozen. I'm taking as much as I can under the circumstances.
Daily Beroccas, two Milo/Sustagen milk shakes, non-stop water. I will try ice-cream soon, I promise. My appetite - what appetite? Desire to eat totally non-existent. Taste buds, dubious. At least I can taste the milo, the Berocca. I have been absorbing calories, watching every cooking TV show around with avid interest. Just about reached saturation point this week though then the political melodrama of Rudd vs Julia swung into play. "My Kitchen Rules" is still my favourite programme of the week, for February, at any rate. Pure irony, eh?
March is a new proposition. Must try to get out a bit more. Have been a hermit for some time. Have been enjoying the isolation mainly. Have found the few visitors, while a delightful distraction, a bit exhausting. Thank you to everyone for the phone messages and emails, wishing me well. Sorry, I haven't felt able to reply to most but it is lovely to have these contacts. Hopefully it won't be such a huge gap before my next blog. And there will be marked improvement. All the best, till then, Gill. xxxxxoooooooo
