Waiting for surgery doesn't get any easier, even though I've been through it so many times before. There's still a sense of impending doom, even though I try to keep occupied and to maintain a positive and hopeful frame of mind. Everything is going to be okay, even though I chose a crappy cheap motel that smells of cigarette smoke and is so close to Sydney Rd that I could barely sleep last night. There was lots of traffic for most of the night, including trucks, trams, and at least one car going frighteningly fast. There was a raucous orchestra of crickets playing through the night, coming from the two vacant and overgrown blocks next door. We've closed the windows and the bathroom door tonight, and I'm sleeping with the boys in one room while Ben sleeps alone with the air conditioner on (it's warm, but not that hot).
We managed to find a much nicer place on Lygon St in Carlton, where we've stayed before, and we're going there tomorrow. It was lucky that they could fit us in. This place isn't far from the old Pentridge Prison, where Ronald Ryan was the last person to receive capital punishment in 1972. I sense a lot of unhappiness and suffering in this area, just like I did at Port Arthur in Tasmania whenever I went there before the massacre in 1996. It might just be a fertile imagination, but I can sense wickedness as well as human suffering in the vicinity of this motel, which is why I'm sleeping with the boys in the room by the door tonight.
I'm feeling the cold quite badly these days, particularly around my surgical scar, and my head has been aching quite a lot lately. I hope it's not the tumour growing some more.
I had a pre surgical MRI this afternoon. I had to give some blood for presurgical checks before that, and the nurse had a lot of trouble getting the cannula in. Then I realised it was because she had my arm extended straight out in front of me. When I bent my elbow like they do in launceston, my good vein became visible at once, and she was able to access it without any trouble. She left the cannula in for the MRI afterwards, it was over pretty quickly, and I haven't heard anything about it since, not that I expected to.
Nathaniel just read what I've written, and said I'm very brave not to cry or be afraid. It has brought a tear to my eye, and I have a clutching sensation in my chest. I told him I'm brave for him, and for David. What choice do I have? I can't succumb to fear, to a self-generated tsunami of what-ifs and speculation.
I've been on the phone to several friends tonight, and should catch up with most of them on the weekend. It will be good.
We ate at Lemongrass Thai restaurant tonight, ordering less than the last time Ben and I feasted there, but still walked away feeling like we'd eaten too much. It was spectacular. David wanted gelati, and to get it , we walked past the park where, in 1989, I sat and ate gelati and fell in love with a boy I'd just met. We also walked along Grattan St, at the southern end of the University of Melbourne, past the building that used to house the English Department, and the school of graduate studies, where I submitted my PhD thesis. I felt a desire to give the boys a tour of the uni, so they could see my old stomping grounds, but it was busy with lots of energetic and confident young people in the first week or so of the new year. I would still like to take the boys around one day, but for the almost smug attitude of the students who were obviously congratulating themselves and each other for being bright enough to gain entry to the university.
I had a good time studying there, but never felt like I was particularly bright, and I couldn't relate to the self-congratulatory attitude of many of my peers in the first weeks. I guess I didn't appreciate the competition for places there, having come from Tasmania, where nearly everyone could get a spot at uni.
The crickets are still singing tonight, and the sound is passing through closed windows and doors.
I hope I'll sleep better, and look forward to seeing my nephew Stephen and his girlfriend Stephanie tomorrow morning, plus a number of other friends and family over the weekend.
I wish I didn't have to have surgery again, but the tumour has to be removed before it grows big enough to kill me, or before it seeds more tumours throughout my brain. Nathaniel said he wished there was no cancer in the world, or that there was a cure for cancer, and viruses. He's a deep thinking little fellow, and I adore him, especially while he retains some of the little boy sweetness, while David is developing an adolescent grunt and attitude to match.
Must sleep now. The crickets are going to become a choir of angels, singing healing prayers for the entire world. They sound like crickets because the radio isn't tuned properly. I'll try to adjust it with my mind.
A blog started in 2013 to inform family and friends about my treatment and progress for early breast cancer. Then I went and got two brain tumours,,both GBMs, completely unrelated to the breast cancer, so the blog continues.
Background and overview
I learnt more about the health system from being an inpatient than I had in 20 years of working as a neuropsychologist. I was unexpectedly diagnosed with two brain tumours on 4/9/13. They turned out to be grade IV Gliomas (glioblastoma multiforme (GBM)). After removal of the right parietal and left occipital tumours, I received the standard treatment under the Stupp protocol (combined Temozolamide (TMZ) and conformal radiotherapy 5 days/week for 6 weeks), but the TMZ had to be ceased after 5 weeks because I had started to develop pancytopenia, where more than one of my blood counts had begun to drop. By Christmas 2013, I had become anaemic and needed a couple of blood transfusions. I ended up in hospital for 3 weeks of the 2014 new year after experiencing my first seizure (suggestive of a right temporal lobe focus) on 31/12/13). They were so worried about my bone marrow, they did a biopsy. Luckily, it was all clear of any nasty disorders. It had just been suppressed by the TMZ My blood counts slowly returned to normal with daily injections of GCSF, which stimulate bone marrow function, for several months. For 17 months I was doing better each day, without any physical impairments or major cognitive problems A third brain tumour was found in the right temporal lobe on 2/1/15, and removed 6/1/15, only to reappear on 17/2/15 after I started to feel vague symptoms at the end of 2014. I had my 4th round of brain surgery on 1/3/15, followed by stereotaxic radio surgery of a residual, inoperable, tumour, on 17/4/15. I've been feeling like my old self again since that highly precise form of radiotherapy, and it feels fabulous.
My way of coping.
I choose to live in hope that everything will work out for the best. I've learnt that even though things are sometimes unpleasant, life and love go on forever. I put my faith in the life force that created and unites us all in love, across all time, space, and dimensions. I refuse to succumb to fear, which is an invention of our imaginations. There are an infinite number of things to fear, both in this world an in our imaginations, and most of them never eventuate. I choose not to dwell on them, and to focus instead on counting my many blessings, current and past, and to have faith and hope that if I look after the present moment, the future will look after itself.
If you're reading, and haven't been in touch, please don't be shy, send me a brief private message using the contact form on the right. It's nice to know who's out there. Blogging can leave me feeling a little isolated at times (I used to have recurrent dreams of being out on a limb over a canyon, or of starting to strip off in a crowded waiting room). Your emails are appreciated, although I can't necessarily answer all of them.
