Been a pretty sore week, but there has been good news! The early morning mri showed the brain cancers had reduced in size and nothing is pressing on anything else and it is all very good and nice. This year there haven't been a great many victories - or if there have been they've been quickly forgotten.
So. Brain is good, just have to work on everywhere else and hope and hope that this new chemo is effective. Its very different to the old protocols - just the way it makes you feel physically, psychologically and emotionally. This chemo is known to cause aches and pains in your bones and muscles. Its difficult to say what pain is caused by what (which drives me mad), and so what to do about them is unclear. It also has some pretty nasty fatigue which, once its taken hold, its pretty difficult to get out of it. Just have to keep going until I'm comfortable with stopping for a while. So basically sleeping until I wake up in need of pain medication.
The jaw pain thing is all a bit weird. As I'd said it hasn't been bothering me much since the increase in dose, but it turns out without that coverage its probably the worst pain I have. We completely forgot my evening meds the other day (which includes all my long acting pain drugs). So I then woke up at 1am with horrible pain in the left of my jaw, hardly aware of any of any other discomfort. Plan is to find a dentist or something tomorrow after bloods who will fix my mouth, and it will somehow then trigger the death of all the tumours, and I will no longer be a bald, bloated, dependant alien. Right, now that that's settled we'll just have to work a good date for the party!
Sigh. So bloods and hopefully tooth stuff tomorrow, chemo friday, and some appointments with various dr's.
Oh and on top of the pain and all, I dropped my iphone in the loo! So dad's popped it in a box with some moisture absorbing super crystal things which may fix it all up. We find out tomorrow.
Hi Katie...not a good place for the iPhone! I have heard that a hairdryer also helps to dry them out. Aunty Bet dropped her phone in the sink one day and it still works, so fingers crossed for yours. Of course, the sink was full of water. I hope the dentist sorts out the wretched tooth. Good news is wonderful to read and obviously even better to hear! Folks in the West will need enough time to book flights for the party. Roll on party time, Katie. Ask Dad to open my Facebook page and show you the photos of our day at Rottnest planting sappling trees all day today. Love to everyone and everything is crossed for the good news to keep coming. S xx
ReplyDeleteHey Katie, still following your blog with interest but should be replying more often, sorry :-) Aren't dads great the way they have those special crystal boxes on standby. Reminds me I must get mine serviced...
ReplyDeleteWe all wait to hear about the aqua-iPhone (?or the iJobs in honour of Steve). In future of course an Android phone is a better candidate for such experiments in the porcelain arena, and I'm sure there will be an iPhone convert who has an old one to donate to the cause.
On a more serious note, of happiness that is, it's lovely to hear about your MRI results. Cause for smiles and renewal of quiet resolve. I hope the dentist was helpful — they do seem to be getting better (a 40-year perspective) at relatively painfree mouth work. Hope your person was good, and in general the past week and one ahead have and will be less painful and fatiguing. Good vibes and wishes have been attached to passing weather systems and will be dropped off in your area in the next couple of days.
A big Wednesday-esque hello to you Katie. Just caught an ep. of the new Rob Brydon show "Would I Lie to You" on ABC tonight. Quite funny. As is the newest Armstrong and Miller series. You can see I'm a bit Anglo-humerophilic (?a liker Brit comedy). How about you?
ReplyDeleteHave you caught up with the latest Escape to the Country? They have a new presenter but the same sort of dithering buyers as always. Still, it's nice to get a peak at the odd little English village here and there. Of course, I'm in Olympics withdrawal right now, even though the Ch 9 coverage was so poor. Really looking forward to the Paralympics coverage in two weeks time.
Whatever you're up to right now I'm sure you're doing it with your trademark effort and courage. It won't be too long before the weather will start to warm up, and you can catch a few rays outside a bit more. Best wishes and love from the western end of the big continent to you and yours.
Hi, Katie. I hope your week has been okay and that the tooth issue either has been resolved or is on the way to being resolved. I had an email from Doug the other day, but haven't looked at emails for a few days. I came into Hollywood Hospital on Wednesday afternoon suffering from flu and funny episodes which I thought was like little fainting type things. However, I now have a pacemaker because I wasn't fainting, but my heart was slowing down and I was actually having flat-lines. I was put on a halter monitor when I was admitted and when I had the 15 second flat, things started to happen and I had the pacemaker a couple of hours later! I wish your issues could be solved as easily, Katie. My email doesn't work on this little netbook I have ... obviously need someone to help me set up the POP account or whatever it is you have to do. I will be going home on Monday as far as I know and I will be in touch again soon.
ReplyDeleteI am still sending you all my very best wishes and good vibes for some chemo or radio to start 'hitting the spots' and doing their thing a bit better in the extremely near future. Hopefully, by now you will have some more positive news.
Lots of love to you all in the east xx :-)
Hi Katie (and Sandra, just specially given your news), Let's hope you're both on the improve soon, and that your Saturday is the best of Saturdays by whatever measure you apply to the determination of whether a particular Saturday deserves the classification of 'good'. You can tell I've been reading journal papers about ontology this week. The season has turned (it's djilba, the grass season) here in Perth). Birds are busy and the flying ants have hatched. A bit of sun here and there, and hopefully where you are too. All the best for a good week ahead.
ReplyDeleteHi everyone, this is Katie's dad. We've just managed to find the password for this blog so we'll be writing a final update shortly. Thanks for all the kind thoughts on her twitter (where she's known as acuddlefish), facebook, etc.
ReplyDeleteDear Katie's Dad,
ReplyDeleteI greatly appreciate that you will post a final update for those of us who only ever knew Katie on-line. It seems such a shock that she has gone so suddenly. She was an amazing and inspiring person and I will miss her cyber-presence.
My deepest sympathies to you and your family and her real-life friends,
Penny
Katie's family:
ReplyDeleteI met Katie online and wrote to her at your home in Canberra, also we sent emails. She was such a beautiful person. I loved her. I nagged her about coming down to Melbourne all the time; what with all the happy people here and the queer scene and great universities. She was so supportive to me last year when I lost my own sister so I can imagine, maybe just a little bit, what her siblings are feeling right now. She loved you all so much. I know she's at peace. My thoughts are with you all - her friends will never forget her.
Dear Katie's Family,
ReplyDeleteThis is deeply, deeply sad. Katie was a bright, philosophical young woman and the world is poorer for her loss. Deepest sympathies to all who knew and loved her.