I'm awake, ridiculously early. Taking some time to prepare for an appointment -- this afternoon -- with "my" oncologist. Listing some questions, noting some current symptoms, asking what will happen next...
It strikes me: Today I meet with the oncologist. But why?!
There was an initial meeting, pre-radiation. Okay, that makes sense. I still pull out the three scraps of paper from that meeting and find new understanding of what is currently happening.
Is it just me? Or are those three pages rather unclear. I do know that only one page refers to chemo+radiation treatment... Does that mean that the second page -- just chemo -- will eventually become relevant? Does it worry anyone -- other than me -- that the three pages are unchanged since the 2005 version id on the bottom of each page?!
Today's appointment is just after half way through the current six-week treatment. Is that significant? All I was told -- or, anyway, all that I remember being told was, This is the date for your next appointment. I'm guessing that it's some form of how's-it-all-going meeting. I'm prepared for my own side. I wonder if Doc Daphne will provide any new information from her side?
I've sent an email so Doc Daphne is not surprised. I'll see which questions are answered...
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Meanwhile, may as well have a status update. Top to bottom... Where "bottom" -- for a change -- is actually my feet:
From day one of chemoradiotherapy treatment I have had pins&needles in my feet. At first I thought it was due to lack of exercise, blood returning to my feet as I started to walk a bit more. Turns out that it's one of the possible side-effects of ... all sorts of things. "Peripheral neuropathy."
I've not found any direct link to my particular drug. No mention in the oncologists's handouts as a possible side-effect. So I'll ask.
Moving up: I've decided that jogging is not for me! Not after sleeping for most of last weekend. I'll settle for walking... If Deb is out for a run, I'll try a 5km walk.
Monday -- I decide to walk home after treatment. Deb is at work, the best bus was (I think) a few minutes earlier. It's a beautiful day. Perhaps I can pick up some coffee on the way?
I pass three or four coffee shops. One is closed Mondays. Others are just closed. One is no longer a coffee shop. Not to worry, there is a new coffee shop close to home: we pass it each morning so know that it opens early... even on a Monday.
I enjoy the walk, taking it easy. Reach the definitely-open coffee shop... and decide that what I really need... is the public toilet on the far side of the nearby park! So I walk on.
I'm now two-thirds of the way home. And, very conveniently, near a shop which sells takeaway coffee -- and more. I buy coffee. And milk, for home. My carry-bag can be used as a back-pack, it's comfortable enough for short distances. So I walk home beside the lake, sipping coffee, carrying a couple of litres of milk. Very pleasant :-) About 6km walked, by the time I reach home.
Feet and legs -- ie walking -- working fine :-) Just not in condition to jog!
Up a bit... The bottom is working as normal. I'm glad I dropped the "anti-nausea". I've had no nausea, certainly no vomiting. Digestion is working fine.
Stomach, though, is expanding. I definitely blame the appetite-building effects of the Dex :-) That... and my enjoyment of eating. If I were running, I'd say that I'm 10kg overweight. If I'm happy to just walk and sit and do not-too-much, I'm still 5kg too heavy. Oh well. I've never been one to limit my eating just because I should :-)
And right at the top: Yes, my hair is definitely falling out. Just where the radiation hits. (So now at least I know where the radiation is hitting!) It's the traditional circle of baldness -- except off to one side.
Deb is getting embarrassed by my "hair" style. Yes, I wear a hat when I'm outside, to keep off the sun. In the shops today, Deb is torn... She is embarrassed when I take off my hat and show off my half-bald head. Deb is even more embarrassed when I wear my hat -- a white towelling cricket hat -- inside the shops. Me? I'm not embarrassed because I can't see the top of my head :-)
We get home and Deb books me in for a haircut. He needs a "number one", Deb says. Doesn't he usually have just a standard cut? asks the hairdresser. You'll understand when you see it, replies Deb.
Apart from that... it's been a standard sort of week.
We looked after grandson on Tuesday, I slept more than the toddler. I seem to be less tired today (that is, yesterday through to today) but that may all fall apart as the day goes on... Today will be quite busy.
I'm on the standard set of tablets but getting twice the radiation treatment. It starts with my head being fixed in place for brain radiation. Then I stand up, remove my shirt, lower my pants, lie down for abdominal radiation. It adds up to about twenty minutes in the zapping room.
I finally spotted one of the tattoos! There are three small tattoos on my body, to allow the x-ray techs to line up the zapper. So that it zaps the same area each time. I noticed one of the tattoos. Pointed it out to Deb. Is that all?! she said... Ah well, guess I still won't fit in with the local bikie gang.
This double-radiation will carry on for three weeks. Followed by a four week break -- as far as I know. A lot of my questions for today are, What then?
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Meanwhile -- back in the wider world -- brain cancer is suddenly the topic of the week. The federal government has announced a new "brain cancer strategy", with GBM as a first focus for research. Sounds like typical government blather but I will ask my oncologist if I should follow what's happening.
There was a bit on tv about the family who apparently have pushed for this new focus on brain cancer research. The mother has brain cancer. Okay, I thought. Then their child -- just a year or two old -- gets brain cancer. As the mother says: incurable, inoperable, terminal. And that, to me, is miserable.
My situation? Nothing to worry about. Relatively speaking.
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Dr Nick Lethbridge / Consulting Dexitroboper
Agamedes Consulting / Problems ? Solved
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Agamedes Consulting / Problems ? Solved
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"If I had asked people what they wanted, they would have said faster horses." … no, not said by Henry Ford
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Now much more than a clever name for a holiday journal:
I like the floppy hat. Cheers Col
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