Feeling very tired after a busy couple of days in Melbourne. Yesterday, a neuroradiologist reviewed my MRI scans with two neurosurgeons, who agreed that I need to have surgery. I'm scheduled to have a right temporal lobectomy at the Royal Melbourne Private Hospital at 9am on Monday, March 2nd, and will need to be there on friday 27/2/15 to have a preoperative MRI. It appears that the tumour has grown back after the craniotomy 6 weeks ago. At least it's not causing major symptoms, other than fatigue, and some difficulties with concentrating and multitasking (which could also be a result of the last surgery, or related to changing from Keppra to Dilantin for seizure control).
This still feels surreal and I find it hard to believe it is happening, but I'm not worried. I believe everything will go well, and I hope to live many more happy and wonderful years. I've had a wonderful life so far, and there's much more that I want to do with it, including seeing all my friends and family again for many more memorable experiences, and to travel to many beautiful places with Ben and the boys..
I'm going to write a little more before I go to sleep. I need to be at the airport by 10am tomorrow, I'm hoping if I get some things off my chest now, I won't be ruminating when I should be sleeping.
The weather has been lovely in Melbourne again. Quite warm and humid tonight. It reminds me of many nights when visiting or living here, where it was sometimes too hot to sleep. We used to lie on the floor in grandma's house in Albert Park, in an attempt to feel less hot. I used to sleep under a sheet with the window open above my head in Barkly St, Carlton. I was lucky to have one of the upstairs rooms in that terrace house, where it was warmer than downstairs in the winter, but pretty hot in the summer. Not that I minded. It made me think of luxurious adventures and travels in south east asia, and I would fall asleep with memories of sleeping in bamboo huts by beaches in indonesia, Thailand, and Malaysia. I would love to visit those places again. It was magic, and the food was sublime. Pineapples and bananas were smaller and sweeter than in Australia, and I tasted lychees, rambutan, longans, and mangosteen for the very first time. A favourite drink in Thailand was lemon and pineapple juice, so refreshing! The same juice here would be too sour with local fruit.
My friend and I stayed in an upstairs room in a place on Monkey Forest Road in Ubud, where we had views of Bali to the north, east, and west (the bathroom was to the south). It was a pleasure to learn how to bathe using the mandi - a tiled tub of water in the corner of the bathroom, with a jug to scoop up water and pour it over oneself. I had some grapefruit body wash from the Body Shop, and the fresh smell and the cool water were more perfect than any means of bathing I've experienced since then. I've heard that Ubud has been overdeveloped since then, with buses and hire cars clogging the roads. Back then (at the end of 1989), there weren't any large tour buses, and it was possible to walk most of the streets without seeing many vehicles at all, apart from motorbikes carrying individuals, couples, or whole families (with small children). We travelled to Lombok by ferry and stayed on Gili Air and Gili Trewangan, spending our days swimming and snorkelling in the clear water. We then explored the area around Kuta in southern Lombok, where we stayed in an A-frame building overlooking the beach. Mice or rats chewed at the mattress while we slept, so we had to ask for a downstairs room the next day. There was a small cafe next door that served fantastic food - bananas, pineapple, papaya and pancakes for breakfast, freshly caught fish in the evenings. The fish was fried and bathed in a sweet and sour sauce made of tomatoes, pineapple, and some chilli - it tasted so good and we were so hungry, we ate it with our fingers before we were given cutlery. I developed a taste for a local drink that was a mixture of beer and apple cider, it was sweet and refreshing in the constant heat. One day, a storm came over while we were swimming at the beach opposite our accommodation. The water remained flat, and the rain fell in cold pellets around us. It was magical and serene, and I've never forgotten that holiday. I'll remember all the tropical holidays I've had before I sleep this hot Melbourne night, and will devise plans to take my family to places like that. I don't like very hot weather, but I do enjoy warm and humid nights. I want to enjoy swimming in warm tropical waters and sheltering in the shade of coconut palms.
I'm glad my brain is still able to access these memories. I could write a book about that holiday, when I was young and thought that anything was possible. I'm older now, and still hope that anything is possible, although I haven't always achieved everything I wanted to - but who does? It's a learning experience to be frustrated in achieving one's wishes, and I'm a stronger person for it.
Sweet dreams, wherever you are.
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.
