What's Up With µ?

[WillTinker]

Created a login just to send you a message.

Hope your mum is fighting hard. The most important thing is to try to give her something to smile about, even when things are as desperate as they are.

And take care of yourself. Remember it is important to you, her, your family that you do.

I'll be thinking of your family and hoping for good news.

Talking is probably the last thing you want to do, but if you want to, you have my email.

Will

[Muirium]

Hey Will, fancy seeing you around here!

Yeah, cancer's rough. Especially losing her voice. We've spent a lot of time together lately (including those of us far away via FaceTime) and she's quite determined to fight this stuff off. When the consultant originally told her the full extent of what they'd found, she opted straight for the most aggressive treatment on his list. Surgical removal of the primary tumour in one go, taking out her voice with it, followed later with radioactive iodine therapy which will latch on to the secondary stuff in her lungs. That second part works better if those are the only thyroid cells she has left. The consultant wasn't expecting such gung ho, he'd already prepared his arguments to steer her towards that technique. But she talked herself into it at the get go.

The hospital rang a little while ago. She's made it through the op. They reckon they've got the tumour out. It was wrapped right onto her larynx, so the direct route was indeed the only way to go. She's still under, of course, we'll visit her tomorrow.

She's grown quite adept at typing with her fingers on glass the last few years. That practice will do her well from now on as she relies on it.

[cookie]

Well that are some awesome news!
I am glad she made it through the operation, she is truly a fighter!

Hoping the best for the radioactive therapy and of course the best for you and your family.

[Muirium]

Thanks.

I was just in to visit her this afternoon. She's awake and out the bed already, preferring a chair. Just a day after a hell of an op! She's pretty tough, see. Still hooked up to all manner of tubes, and still to get used to the fact she's lost her voice, and the sheer strangeness of it all. But she's brought her best fight to this battle, and won the first round. We're all quite relieved, let me tell you!

[SL89]

Good news Mu. My thought are with you and the rest of the µ family.

[scottc]

Glad to hear it, Mu.

[Muirium]

Been in for a second visit. She's in fine fettle. Cross at how all us dummies misunderstand every gesture she makes until she writes it down! That's her all right.

[chzel]

It's nice to hear such good news μ! Wishes for a speedy recovery!
And now it's your obligation to purposely misunderstand her gestures every now and then.

She's grown quite adept at typing with her fingers on glass the last few years. That practice will do her well from now on as she relies on it.

Pfffff...glass...
Get her a Topre at least...Or a Model F. Are we keyboard weirdos or not?

[Ray]

Best wishes to the tough fighter! Life can be a bitch, but only the fool is looking back at the good times and not working towards the future.

[Muirium]

Yeah, I get what you're saying. There is a sense of loss, for sure. But not nearly the loss you get without treatment! She's been waiting for this op for months now, and really wanted to get it over with so she could get on with her recovery.

I reckon we'll have good times again yet.

She's grown quite adept at typing with her fingers on glass the last few years. That practice will do her well from now on as she relies on it.

Pfffff...glass...
Get her a Topre at least...Or a Model F. Are we keyboard weirdos or not?

I have been almost entirely unsuccessful at converting family and friends to the mech world! They like the feel, and sometimes even the louder sound, but just the thought of standalone keyboards is enough to put most of them off. Even pretty caps aren't enough to convince the doubters. Even pretty caps!

My mum's definitely in that category. She never got into computers at all until we got her an iPad. She's iOS-exclusive and doesn't like the idea of typing on a board that isn't also the screen, despite all her years doing typing as a secretary. Last week, before the op, I showed her around the Apple Store to try out things for size. (My Californian brother is coming over this summer and he's bringing her upgrades.) She homed right in on the 12" iPad Pro until I got her to lift it up and try to type. Actually using the thing convinced her to go with the size she already knows. Besides, the 9.7" Pro is Apple's best iPad. That extended gamut display, and True Tone dynamic white balance… Anyway, I digress! I showed her the keyboard cases and she was as unimpressed with them as I am. Not nearly good enough feel to justify the awkwardness and extra cost and weight. Then I showed her the Macs. She just does not like OS X at all. The first thing she wanted to do with the ever so thin and pretty MacBook was pick it up from the edge and swipe at the display! She may be old, but she's definitely on the next generation of UI than us lot with mice and keyboards.

The only folk in person I've had luck converting are the already-still-on-a-desktop crowd. Topre is the most popular with them. (It really helps to have some for them to try in person, the NovaTouch in particular. Pretty caps, see.) And one friend who's full time on Montereys now, since he came by a free vintage Chicony. The switches are fantastic, but the ABS caps! Still, he was well used to those already, so for him it's all good.

[WillTinker]

Hey Will, fancy seeing you around here!

Yeah, cancer's rough. Especially losing her voice. We've spent a lot of time together lately (including those of us far away via FaceTime) and she's quite determined to fight this stuff off. When the consultant originally told her the full extent of what they'd found, she opted straight for the most aggressive treatment on his list. Surgical removal of the primary tumour in one go, taking out her voice with it, followed later with radioactive iodine therapy which will latch on to the secondary stuff in her lungs. That second part works better if those are the only thyroid cells she has left. The consultant wasn't expecting such gung ho, he'd already prepared his arguments to steer her towards that technique. But she talked herself into it at the get go.

The hospital rang a little while ago. She's made it through the op. They reckon they've got the tumour out. It was wrapped right onto her larynx, so the direct route was indeed the only way to go. She's still under, of course, we'll visit her tomorrow.

She's grown quite adept at typing with her fingers on glass the last few years. That practice will do her well from now on as she relies on it.

Good to hear she's in good spirits today. And it's good that the doc wanted to talk her into the extreme treatment (and your mum's willingness to go that route) - he obviously thought that it was worth doing and that it gives her the best chance to recover.

[webwit]

Good news! So when does she get the synthetic voice? I wonder how that sounds in Scottish.

[Muirium]

Hate to spoil it for you, she's English!

I recorded a good bank of basic stuff with her last week so I can try to make a soundboard for common things, where finding and pressing the right button will be quicker than writing / typing it out. She also recorded a good few samples for that artificial voice thing I mentioned earlier, which would work more generally but sounds quite robotic. Nag as I might, I never put her off Spee-king ver-y del-ib-er-ately when she made the samples; which it faithfully emulates! Urgh.


@Will. Aye. She knew to bring her best fight to this, and she delivered. There will be more of that ahead, but this was the big one. She's come out of it with a sterling victory. Can't ask for any more than that!

So, what's all this about MX reds?

[zslane]

It's good to hear things are on the upward swing with your mum. Keeping all my digits crossed for her and her recovery.

We miss you, Mu.

[matt3o]

if you need assistance in building any kind of app to help your mum, just let me know.

[derzemel]

I talked a bit with my grandma as I remembered that her grandpa could not speak (bayonet stab wound in WW1) but he would whistle and managed to develop an actual vocabulary where he could transmit short ideas through whistles and gestures.

And I hope you will not find this offensive, but you maybe your mum could learn something like this.
For example, you could take her to the Canary islands, for some relaxation and to hear first hand how Silbo is spoken/whistled:

Then, when you mess up, she will not call you on your full name (we all felt the terror when we heard our full name uttered in a stern tone by our mothers - I still do and I am 31), she will whistle your full name... then the whole city will think "ooohh, Muirium messed up, he gonna get a whopping"

[Muirium]

Nice idea, but no good for her. She's not breathing through her mouth now so it wouldn't work. Her procedure was a tracheotomy. She'll be able to eat and drink again, in time, but her airway isn't hooked up any more. No whistling.

I'll tell her the detail about the WWI bayonet wound, though, knowing her she'll like that! Her surgeon was a little more careful than a guy trying to kill you!

if you need assistance in building any kind of app to help your mum, just let me know.

Appreciated. I'll see what I can do—right now she's off touchscreens because of the awkward tubes on her hands she's hooked up with after the op—and if I stumble, I'll come to you. What I've got in mind is a simple selection of common phrases, which I recorded with her recently, each accessed with a single button. Naturally, that doesn't scale well, but I think less is more, frankly. Typing is so much more efficient at anything more than a word or two.

[andrewjoy]

Glad to hear things went well , some people are made of stern stuff , good on your mum for being strong.

Whist your setting up the voice stuff you should get this for when your talking and she has had enough

[Findecanor]

Good to hear that the surgery went well. My best wishes for your mother's recovery.

For the long term, I do suggest that you look up "burp-speech" that I mentioned that my father used. I'm sorry I don't know the proper word for it. Once he had learned it, he needed no tools for speaking and he had no problem being understood. He just sounded like he had a really sore throat.

Maybe you have already been told, but I could also tell you: If you are a smoker, do be very considerate around your mother. Not just no smoking near her. Wait ten minutes after smoking before you enter her home or room. I am deadly serious about this -- her breathing hole is now incredibly sensitive to air pollution and she can't clear her throat like normal people can.
I'm not exaggerating about the importance of this. The breathing hole has to be cleaned at least half a dozen times every day.
The direct cause of my father's death was that he choked when his breathing hole clogged up while drugged on morphine, unable to clean it himself.

[WillTinker]

Hate to spoil it for you, she's English!

@Will. Aye. She knew to bring her best fight to this, and she delivered. There will be more of that ahead, but this was the big one. She's come out of it with a sterling victory. Can't ask for any more than that!

So, what's all this about MX reds?

It's the name of a switch that I know exists!

Some day I'll upgrade from my current keyboard... most here would consider the 6 year-old one I'm using (http://www.techradar.com/reviews/pc-mac ... 541/review ) a bit of an insult.

[shreebles]

Absolutely disgusting, that keyboard. You've come to the right place

Quick tip, remove the parentheses around the link or add a space after the URL. Otherwise, that link will not work for anyone until they remove the " ) " manually.

[WillTinker]

Absolutely disgusting, that keyboard. You've come to the right place

Quick tip, remove the parentheses around the link or add a space after the URL. Otherwise, that link will not work for anyone until they remove the " ) " manually.

Argh, sorry about that!

Mine comes complete with crumbs (in case you get hungry and there's a local famine), and the 'www' media button missing (deliberate adjustment, because that's a stupid button!).

That Orée wooden keyboard looks nice to me, but it costs a lot and it's Bluetooth... and for some reason I never get on well with Bluetooth. I type things and half the time keystrokes don't register, or register late. I think I must give out a strange interference, since no one else seems to have these problems.

[vivalarevolución]

I was going to ask if a proper keyboard solution has been discussed, but it seems we covered the topic.

Regardless, great to hear the update!

[ShivaYash]

Spend time with your family my dear fellow. If I can help in any way, please let me know.

[WillTinker]

John, we'll be popping over to Edinburgh on 9th June and staying for 4 nights.

If you'd like to meet up that would be great. Beware though... we have two young children that'll no doubt keep us all occupied.

Hope your mum is still in high spirits after her operation and things are still encouraging.

[Muirium]

Email's a better way to arrange stuff like this instead of a public forum. I wrote to you a day or two ago but haven't heard back. Changed your address?

[WillTinker]

Email's a better way to arrange stuff like this instead of a public forum. I wrote to you a day or two ago but haven't heard back. Changed your address?

Odd, I didn't get anything...

I'll PM you with my email address.

[Muirium]

Update: My Mum's still in hospital, and I'm still spending a lot of time with her. (So I'm a looooooooong way back on answering PMs.) But the good news is she's recovering quite nicely. We have a wee family-wide chatroom of sorts—don't get your hopes up, IRC fans, it's a group Messages thread on everyone's iPhones and Macs—and the photo history is something to behold. Right after heavy surgery she was beat up good. Scrolling through the pictures shows just how well she's recovered. There's still a few things to do until she's released. A prime one being removing a stent from the new esophagus they built for her. So I'm still pretty busy for now.

Once she's home and shaken off the sense of staying in a creepy hotel for most of a month and counting, round 2 kicks off in June with another stay somewhere quaint. In this case a dark magick potion she's to drink in a lead lined room, where she sits out the wonders of radioactive iodine. I'm preparing my Russian spy jokes in advance for this. That procedure, while way less invasive than her first, still needs company and I'll provide it. The iodine is to target the secondary tumours she has in her lungs. Anything it doesn't nuke goes on to standard radiotherapy.

Stage IV cancer, folks. It's a bitch of a fight! So far, she's absolutely up for it.

For someone who's lost her voice—and was always a maniacal chatterbox—she's learning to become highly expressive without the use of words. This is another reason why I like to be with her so much, so we can work this stuff out together.

[tp4tissue]

Update: My Mum's still in hospital, and I'm still spending a lot of time with her. (So I'm a looooooooong way back on answering PMs.) But the good news is she's recovering quite nicely. We have a wee family-wide chatroom of sorts—don't get your hopes up, IRC fans, it's a group Messages thread on everyone's iPhones and Macs—and the photo history is something to behold. Right after heavy surgery she was beat up good. Scrolling through the pictures shows just how well she's recovered. There's still a few things to do until she's released. A prime one being removing a stent from the new esophagus they built for her. So I'm still pretty busy for now.

Once she's home and shaken off the sense of staying in a creepy hotel for most of a month and counting, round 2 kicks off in June with another stay somewhere quaint. In this case a dark magick potion she's to drink in a lead lined room, where she sits out the wonders of radioactive iodine. I'm preparing my Russian spy jokes in advance for this. That procedure, while way less invasive than her first, still needs company and I'll provide it. The iodine is to target the secondary tumours she has in her lungs. Anything it doesn't nuke goes on to standard radiotherapy.

Stage IV cancer, folks. It's a bitch of a fight! So far, she's absolutely up for it.

For someone who's lost her voice—and was always a maniacal chatterbox—she's learning to become highly expressive without the use of words. This is another reason why I like to be with her so much, so we can work this stuff out together.

My mother's got thyroid problems too.. All the doctors assure us that it's not a big deal because even if she does get thyroid cancer (eventually), the survival rates are much much higher than other cancers.. All the best..

[Muirium]

My mother's got thyroid problems too.. All the doctors assure us that it's not a big deal because even if she does get thyroid cancer (eventually), the survival rates are much much higher than other cancers.. All the best..

Thanks.

She was spotted very late. Full Stage IV cancer here. After a month in hospital, she is back home now but there's still a lot to do. A recent X-ray showed why she's having trouble swallowing with her new esophagus. Still to hear what they'll do about that. It's important it's working well for her next treatment where she takes radioactive iodine for her lung cancer.

Always better to treat early. How was your mother's spotted?