April 25th, 2015. I slept like a lamb last night, and woke to a beautiful autumn day, with warm golden sunlight playing through the bush on the drive out to my home town of Lilydale. Autumn colours were beginning to emerge on the main road. We went to the annual ANZAC Day service at 11am in the Lilydale Memorial Hall (opened in 1955, according to a pass to the opening ceremony I found in some of my father's things). The service has usually been held at the Cenotaph since the 1990s, but it was cold this morning, and there was a photographic exhibition in the Hall. The Memorial Hall is a beautiful Art Deco building on the main road, next to the school. We used to have lots of fun there as kids, with the hall being used for many community events - including dances, parties, fairs, and annual ANZAC day services. I went every year with my parents, often freezing in the then-unheated hall, and I haven't been since 1985, when I was in year 12. It's where I learnt ballroom dancing on school nights in primary school (the hall doubled as a gym for the school) and I remember at least one Slim Dusty concert there in the 1970s. We had a Bardenhagen family reunion there in 1988, to mark the centenary of the general store built in 1888. It was wonderful to return after so many years, and to see the names of my father, two of his brothers, their father, and their cousin, on the honour roll to mark the two world wars. Our family were lucky that none of them were injured in WWII, and that my great-grandfather Ludwig Bardenhagen returned from WWI.
During the service, the sun streamed through the north-facing windows and warmed the hall, which was packed with over 120 people. I recognised several folk, including my grade 5 teacher; a school-friend's mother; another's widowed father; and a woman who used to teach at Sunday school, who had a son my age, and a slightly older daughter.. My heart overflowed with joy to see them all again, it was so good, especially after my recent sense of time running out. I'm going to go back for ANZAC Day every year from now on, and maybe to any fairs or other local events so I can reconnect with community where I grew up and lived for 18 years, plus almost every university holiday. I even put a choir together to do Christmas carols when I was in year 12 (looking back, that was a little ambitious for an 18year-old, but it seemed to go down ok, and the choir sang well. Maybe that's one of the reasons someone at the school nominated me, successfully, for an Australia Day young citizen's award, announced in 1986, and collected by a childhood acquaintance because my family had no idea about the nomination and were cruising the south Pacific on Fairstar, "the fun ship"). I'm also planning to go out to stay at Mum's at least once a week, so I can help her sort through the things in our 3-bedroom family home, which is still cluttered with things from her mother's house after Grandma died in 1993.
I'm glad to see that my autobiographical memory is still intact after a couple of incidents today where I was told something had happened and I didn't remember it at first, then it came back to me. It's not a verbal memory problem, it's almost what we would call an episodic memory problem, i.e., a loss of memory for certain episodes. I 'm sure I don't remember this being described in the literature on right temporal lobectomies (ATLs )or in histories given by any of our right ATL patients at St Vincent's, so it's odd to experience it happening to me right now. On reflection, I know that I discovered I'd forgotten at least one event today, but I can't remember what it was right now. The first time this happened that I can recall was when the boys told me I attended the school concert after my first craniotomies in 2013, and I couldn't remember it until I saw a photo of the auditorium. I'm starting to feel like a fascinating single case study in neuropsychology, and that's a rather strange thing to be. It's actually very weird. I even looked up "episode memory loss after right ATL" when it first happened this year, but I didn't find anything. If any of you, my readers, have encountered this kind of thing in your neuropsychological patients, or in the literature, would you mind dropping me a line using the contact form on the right of this blog? If anyone is inspired to do some research on this, can I be a co-author? If you ask me nicely, and want to talk about it, I might even volunteer to be a single case study, though anonymity might be a bit of a problem.
I've downloaded photos of four paintings I did in HSC Art in year 12. Two of the paintings are at Mum's place, the other two are in our house. Ben doesn't particularly like them, but he never studied art at school, or art history, and sadly doesn't appreciate anything much after some of the French Impressionists. There's a brief description of each painting, and the tapestry, in the captions. At the time, several people said they didn't like the skies, I'd painted, and some boys commented that there'd never been any purple tennis courts, and never would be. I'm sure I saw some purple tennis courts on television somewhere in the past year or so. I only painted the tennis courts purple because the dreary clay courts in the photo I was painting from looked ugly. I was inspired to colour them as I did when the painting was nearly completed. It was the first work I started, and one of the last ones I finished.
Art was one of my favourite year 12 subjects (the others were Biology B, Social Psychology, and English Studies). I spent every spare lunch-break down in the Art room. Other lunch-breaks were spent in choir practice (the late William Pierce, church organist at St John's Anglican Church in Launceston, and music master at my school, was a fun choir master and lovely bloke). My Art teacher, Annette Simmons, said I received the highest mark of any of her students until then, when the final results (written exam and portfollio) came in. She encouraged me to continue painting after leaving school . I'd love to do it again soon. I have paintbrushes and acrylics ready here at home, so I just need to buy something to paint on. Imagine what I could have achieved if I'd kept doing it these last 30 years!
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.