The surgeon looked at my scans this morning and his rooms rang at midday to ask me what time we could get to Hobart. We arrived after five, and I was admitted straight away. The surgical wards are full after the holidays, so I'm relaxing in ICU, waiting to see the anesthetist. Feeling great, a little tired, happy to have seen Dionne after 30 years. Don't be alarmed by the ICU thing, I think it's just a bed allocation issue. I'm feeling great, thanks to the 4mg of steroids I've been taking each day since Friday. My presurgical MRI is booked for 7am, and surgery for 830. Thanks to all you darling people for your concern and support. Love, hugs and light to everyone.
Tuesday 6th January
1240 am. Looks like it's going to be a long night. I said a full cycle of over 24 different mantras before a wonderfully cheerful and competent ICU nurse called Matt expertly needled my infusaport, getting it right and perfectly sterile, the first time.. He took some bloods for tomorrow, and has me on a slow 10ml drip overnight. I've slept a little, but the aircon is noisy and gentle alarms keep sounding. And they'll be waking me at 5 to give me the gliolan to drink, so that the tumour cells will light up bright pink under a fluorescent light during surgery tomorrow morning. The surgeon is still as wonderful as he was last year. He has a gentle and reassuring seriousness about him. Good news is that he doesn't think we need to worry about the possible neningioma on the left temporal lobe, but I'll interrogate him about that after tomorrow. Time to close my eyes again for 4 hours.this all feels very surreal. I'm strengthened by the love and support of you wonderful people. Eternal love and gratitude and blessings to all of you.420 am. I've slept 2-3 hours since my last update, and just talked for an hour with my nurse when I accidentally pressed the call button rather than turning the telly on, as I intended. Talking to him was far better. He used to be a neuroscience nurse in NZ, and has been an ICU nurse for over 20 years, so he had lots of fascinating stories to share about various brain disorders. We had a very animated conversation, and I feel like he was the perfect nurse for me to have tonight. Talking about the many, varied, bizarre, and sad presentations of brain disorders makes me so glad that I found neuropsychology for my career, though it's been more of a passion and vocation, and I'm looking forward to being able to contribute to professional and public understanding of brain conditions in a meaningful and helpful way once this surgery is over. I'm feeling exhilarated, like I've just caught a great wave and body-surfed it in to the shore. I trust that the surgery will go well, and that I'll body-surf with my body and mind many times in the future. When it's all over, I want to be laid to rest in the cemetary on the hillside in Lilydale, with many other bardenhagens. But that won't be for many years yet, I want to live to 102 like my great aunty Olive, who lived at home until the end, and who saw a hand coming through her window one night. She whacked the would-be burglar on the knuckles with her walking stick, and told him to get out of it!
I'm feeling so energised and enthusiastic about everything, it's a wonderful way to face surgery. And, no, this isn't steroid-induced, I haven't had any since yesterday morning.... Okay, maybe there is still a little in my system, but I truly feel more happy to be alive than I have since the first time around. I find it hard to believe it's just the dex giving me this exhilarating adrenaline rush. I'm so lucky my tumours grew where they did, that they've been detected early, that they've all been operable, and that I have an excellent surgeon. I know I'll be a bit muddle headed and probably fatigued and irritable after surgery, but it's only temporary, I'll get through it again, like I did before.
15 minutes to the Gliolan. 2.5 hour to the MRI, 4 hours to surgery. Maybe 8 hours to my next update. Love, thanks, and blessings to you all.
6am. Clean and gowned after a shower with chlorhexidine presurgical body wash ( the pack says to avoid eye contact, but failed to mention not to talk while rinsing it from hair. Tastes bitter.) have had my morning meds and the Gliolan, it tasted salty this time, I thought it was sweet last time. Right now the synthetic giant scorpion venom will be getting absorbed by my tumour cells, and they will glow a fluorescent pink under the blue light used in surgery, allowing the surgeon to better visualise the tumour and remove more than would have been visible with the naked eye. Time for one more hour of sleep until the MRI. Have a great day!
wednesday 7th January
1123am Ben and the boys are here, I'm so in love with all three of them. The bandage is off my head, the ouchy arterial line is out, and I'll be having another MRI at 245. Time for more sleep. Pain is well-controlled, and all neuro obs are good: pupils equal and reactive to light every time they test it, and my power is good, though I'm not out of bed yet, though the Physio has seen me and I'll be safe to wander when the urinary catheter is out. Xxx
Thursday 8th January
230 am How's this for a title for a book on my experiences? "Saved by music/Beethoven"?
It's impossible to succumb to fear or give up when I have the choral music of beethoven,
Mahler, orff. Brahms, and Vivaldi running through my mind. Particularly the B9, his Missa Solemnis. And Orff's carmina burana. The power and pathos and slow
Sections of those works, and the hours
spent rehearsing and performing them, has prepared me for the different sections of my recent experiences. If Beethoven could
compose such amazing music. I can get through all this.
Time for more sleep. It's been a good night for sleeping,
The endone, panadol.and fentanyl have helped dull the pain. Sweet
Dreams.
Thursday 1142 am
I'm in a single room after a somewhat noisy night in a shared room. The man diagonally opposite me had severe sleep apnoea, poor thing, he must be chronically tired from all that snoring and snorting.. I managed to sleep well though, and now that I'm set up in my new room, I'll be able to write properly and hopefully sleep better. They rescanned my brain yesterday, we were a little concerned about the staples that are still holding my scar together, but they didn't grow hot or fly out in the MRI machine, and the surgeon said he's looked at the scans, which seemed okay, although they hadn't been fully loaded at that stage. We still don't know know what the histopathology report says, and I'm not going to worry about it until I see the surgeon with the report in his hand.
Must go now, I'm very tired, but feeling good after a shower and change of clothes, and for having amy beautiful boys here with me.
