Oh ****!

I've very recently developed tingling on the right side of my face, down my right arm to the hand,  ring and little finger, and down the outside of my right leg. It began 2 nights ago and  is back again today. I'm concerned that something is growing in my left hemisphere, possibly left parietal, below the sensory cortex. No motor signs yet that I'm aware of. My power was ok when i saw an oncologist yesterday. He wrote a referral for an mri, the earliest they could see me was next Tuesday. If he calls them today and says it's urgent, they might be able to see me sooner than that.  

Such a dratted nuisance, especially after feeling so good walking all over town  in  the autumn sunshine yesterday. I'm not permitting myself to worry about it, only to take positive action, like trying to get my mri scan done today or tomorrow, and calling my radiation oncologist in Melbourne to ask about waiting times for stereotaxic radiosurgery. Deep breath, time for a shower after a morning of diarrohea as bad as I had at the lake palace hotel in Udaipur, 17 years ago (think of the palaceon the lake at the start of the james bond movie called Octopussy). I must rush, lots to do this afternoon.

New symptoms?

Text message to my oncologists 30/4/15

Hi . Ive only just started to experience bilateral tingling in my face, either side of my mouth, and down the lateral aspect of each arm, it feels a little like pins and needles. Earlier this evening, I thought i was getting lymphoedema on my left, as it feels heavy and a bit swollen under the arm. Ive been sleeping very heavily lately, but not to much today. What should i do? Get an MRI tomorrow?  I also have new onset tingling in left leg. Thanks. Fiona

Year 10 art

Acrylic on paper, based on a photo from the locsl newspaper

Moonscape from my imagintion

And now for something completely different: Some of my year 12 artworks, thoughts on my first ANZAC day service in 30 years, and another experience of forgetting recent events.

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 view of the Scots College, Sydney, from the boarding house, based on a photo I took during the Royal School of Church Music Summer School in 1985. The Tasmanian HSC examiners reportedly said this was one of the best paintings they'd seen so far in 1985, and my school kept it on display for a couple of years

A windy day in Mackay, North Queensland, September 1981. Based on a photo taken on a family holiday (5-day rail trip from Brisbane to Cairns). The painting is slightly damaged in the upper left part of the sky . The white mark is where som paint peeled off, it's not a UFO. 

A tapestry based on a landscape by Hans Heysen. Started after my 16th birthday and completed many summer holidays later when I was 21. I'd been hoping for a red convertible for that birthday, so my mother knitted a little red convertible with a female passenger inside (Mum has a mischievour sense of humour)

Left: Based on a photo of the little creek and ti-trees behind Bardenhagen's petrol station and school bus building in Lilydale Tasmania. Right: based on a photo of a cliff on Sarah Island in Port Arthur, Tasmania. The island was used to house children in the old penal colony, and an arrow, signifying a convict, was painted on the cliff where a child fell to their death. One of the most tragic places I've ever visited, and that was before the 1996 massacre. 

Facebook update and comments from 11/2/15

A status update and deidentified facebook comments from February 11th this year, showing how Facebook can be a wonderful way of sharing information and getting support from friends and family.

Leaving Melbourne, 8846 steps and 6.4km of walking in one day (thanks to Fitbit Xmas present from myself). Feeling uncomfortable after seeing neurooncologist. He was candid without being condescending, but isn't sure if I should have radiotherapy again, and he recommends Avastin as the next line of treatment. He was highly skeptical of the value of the CT that showed residual enhancement in the right temporal lobe. Said I should be able to have Avastin in Launceston, but it's administered IV every couple of weeks, which will limit our ability to take the long holiday I'd been planning to have this year. We'll have to settle for multiple short holidays instead, I hope the school terms line up for us. I want to take the kids around Australia this year. Would have preferred Singapore, Malaysia, Thailand (NOT PHUKET), Burma, Ladakh, and Europe, but we'll have to wait for that. I should be back in Melbourne for a meeting in a couple of weeks.

Some deidentified comments:

A cousin
Ok. Well we knew radiation mau be off the cards; and being ay home will keep the boys as settled as possible. What are the pros and cons of Avastin? I'm glad he was candid. Candor may be just the thing sweetie. Hard but honest and not throwing in the towel.....just the thing. Love you to infinity darling heart. Always xoxoxoxox

Ps. Awesome effort on the walking! You legend you xox

An old school friend and now oncology nurse

Avastin is given in outies.
Take care hon; damn great approach to disease and its treatment. Thinking of you; walking beside you. X

An old workmate
Was great to see you and give you a hug! Thanks for the insight and thinking of us to share it. Take care! 

School friend #2:
Some short holidays could be great fun too! I'm sure you will find plenty of local places to enjoy Fi. And we can come to you as well - We are coming to Devonport later in the year and hope to catch up with you

Another psychologist
Take care Fi, and stuff the school terms. Make them fit around you!

My cousin again
What he said! Stuff it. Go and make memories

School friend #3
Agree life is remembered by experiences not dates of the school term.

Medical friend
Avastin is easy to take. Minimal side effects. Works very well sometimes.

feelings

937am on Friday the 24th of April.

I slept well most of last night after staying up late working on the blog with posts cut and pasted from my facebook status updates. I could have done with a couple more hours of sleep, but Nathaniel's staying home because he's not feeling well, and my mother is coming in the next hour or so to take me to do our grocery shopping. I would love to sleep some more right now, but I need to get some feelings off my chest, because I haven't had a chance to write them here yet, and they've been bothering me regularly the past few weeks, especially when I'm feeling tired or lonely.

The events of this year have cut through the protective defence mechanisms I was using - denial, optimism, hopefulness. I can still summon up the last two when I try, but it's like catching the tail of a fleeing pet mouse. I feel struck by the reality that I have a currently incurable brain condition, and the surgeon's comments that the T2 hyper intensities in my right temporal lobe suggest that there will be tumour growth there at some point. I've always known that GBM spreads invisibly throughout the brain, that having recurrent multifocal GBM isn't good at all,  that although there are some people who've managed to survive well and for decades with this condition, and that my prognostic outlook is good because of my gender, age, and health status. Learning about, and having, the stereotaxic radio surgery last week has given me hope that there are noninvasive options for any future tumours that are considered inoperable, but I'd dearly love to know that it won't be necessary, that I won't have any further recurrences.

The feelings that have been bothering me lately have been the ones about a sense of running out of time. I've always liked to finish things off, to complete what I've started, to live an organised life in a tidy house with regular contact with friends and family and regular pleasant trips to the countryside. I've had a good life with lots of wonderful experiences, and I'm not ready for it to end any time soon. I'm not finished with it yet. There's still too much to do. I'd like to meet most of my friends, family, former students, and workmates at least one more time in the next year or so in case fate decides my time is up. I'd like to retrieve all the digital photos we took after 2002, so the boys will see a record of their early childhood. I'd like to write stories about my life and the boy's early life so they'll have it there to read if I'm not around to tell it to them one day. I'd like to help my Victoria university research students get their honours and doctoral research projects published, as they did important and useful work, earning first class honours for the two honours projects, a vice-chancellor's prize for one of the doctoral projects, and passing with minimal, or no, amendments for the other 4 doctoral projects.

There are a lot of projects I initiated in my time on the CCN national committee. I'd like to see them finished, but it doesn't help that I misplaced 2 USB sticks will all my work on them after our holiday in Queensland last April. I thought I lost my reading glasses with them, but I found the glasses yesterday, so I'm hoping the USBs will turn up in the house as well.

I'm not going to go on much longer, because I'm getting an increasingly heavy feeling in my chest and tears are welling up in my eyes. I don't want my life to end any time soon. I want to finish off many unfinished things, to see or talk to many people, to travel, to swim in the sea, to work in the garden, to laugh with my children, friends, family, and other people I know. I'd like to write in detail about my wonderful life.  I'm not afraid of death, it will come to all of us at some stage, and it will be fine. I just don't want to leave this life any time soon, there's too many important things to do.  I don't want people to avoid me because they're concerned about my health, because it upsets them to know I've been thinking like this. I'm still alive, and I've been thriving lately in the company of others. It's been making me feel more invigorated and happy than I have for the last two years.

This is a hard time I'm going through. I brought a tear to Ben's eye the other night when I told him a snippet of these thoughts and feelings. I know he cares about me, and that he's also feeling a need to get many things organised for our family in the near future. It's easier not to open the cover of the well of possibilities and options that lie before us, there's a deep hole beneath it that could suck us in. I don't want the children to see the darkness beneath. I want us all to stand on solid ground in the warm sunlight and to marvel at the autumn leaves and the beauty of the world. I want to maintain my hope that this thing can be defeated, and to institute new strategies to help us stay happy and contented as a little family unit. I want to be here for my boys as they enter adolescence and early adulthood. I don't want Ben to be left alone to bring them up without me.

Imagining such things is awful. I have to focus on making the most of the present, every single moment of every single day. Thinking too long about future possibilities can be very distressing, so I can't let myself enter that quicksand. I need to give thanks for all the good things that have happened, to enjoy all the things that I can do, and to imagine all the wonderful things that are possible in the future.

I must get up now (1014am). My mother will be here soon, and I need to shower and get dressed. Nathaniel has cleaned the bathroom, and is having a shower. He's turning into a very helpful and responsible 10 year-old. Both my boys are very handsome, with brown eyes and perfectly shaped lips like their father's. They showed exemplary manners and behaviours while we were staying with friends in Melbourne, which made me proud, so I'm hoping to help them continue to develop kind, polite, considerate, and thoughtful behaviours.

(Big sigh). I can have a decent nap this afternoon when I get back from the shopping with Mum.

509pm, no nap yet. The shopping trip went well, then a delightful visit from a couple I met in the front row a David Helfgott recital at the Princess Theatre in Launceston. The tickets came from my old friends at St Vs in Melbourne (thanks Catherine and Leonie and the gang for getting them), and my friend Liz and I were seated next to a couple who I hadn't met before. Both had shaved heads, hers was becaue she had an astrocytoma removed the year before. They're a lovely couple, and we have caught up a couple of times since then, once for a visit to their place to walk around their suburb, and then again today where we sat in the house while it rained outside and I told them confidential stories about my life that had them laughing and encouraging to write my memoirs under a pen-name. It's still Autumn. Winter doesn't officially start until June, but I do love being inside a warm house on a quiet rainy day.

I had a strange experience during the trip to the supermarket. Looking for various items after not shopping there for a few months, I was struck by the thought that I might never go there again, and it didn't feel good. The feeling reminds me of the time the Broadland House principal, Miss Lillian Powell, announced in 1982 that the girls' school was going to amalgamate with the coeducational Launceston Church Grammar school. I was heartbroken by the knowledge that I would lose the school that I loved at the end of the year. The other girls laughed at my distress (it turns out, years later, that many of the parents knew or the proposed amalgamation, even mine, but no-one had told me). I had been a boarder at Broadland since starting year 7 at the school in 1980, and I loved it. It was like being at Enid Blyton's Mallory Towers for me (though we didn't play lacrosse, and I didn't even get to play hockey, and thankfully we didn't have to suck on lemons at half-time in anything like the girls at Mallory Towers).  I'd never wanted to go to Grammar, not that I knew why. My intuition told me it wasn't going to be good for me, though in the end it wasn't that bad. I made some very good friends there, enjoyed singing in the school choir, participated in the musical Salad Days in year 10, and in the chorus of Pirates of Penzance  in year 11. I was even cast in the role of Lady Jane in Gilbert and Sullivan's Patience (or Bunthorne's Bride).  I memorised my part and turned up for the first scheduled rehearsal in the school holidays, only to find the director had left the school, and everyone seemed to know but me (because I was the only one who attended). I never found out why he left. I sat in the bow in the first girls' crew to ever row at Grammar. I was the first girl to receive colours for my contribution to rowing (a half-blue), which was a complete surprise, because I'd never been good at any sport before. I wasn't bad at swimming, often coming 3rd in breaststroke for my age-group at the school sports, but I was totally uncoordinated when it came to ball sports. Miss Tebbs, our sports and biology teacher, commented one evening at training that I was better at biology than netball. A bizarre, amusing, and truthful statement that didn't bother me at all. I wished I could get out of playing the game and go back to my studies and writing letters to some pen friends.

Anyway, I feel better now after writing that, proving that feelings do pass, that it's best not to dwell on them. Today's sense of impending loss was unexpected, like a big dumping wave at the beach.  It was very perturbing, to say the least, to look around a dingy supermarket and feel distressed that it might be the last time I saw it. I'm determined to see as many of my old friends and acquaintances as possible, because it's been far too long for many of them, and recent experience has proven that sharing stories and laughing with people is extremely therapeutic and energy-giving.

Time for a quick nap before I cook tomato soup and sausages for dinner. I absolutely love the rain and being in our nice warm house. It feels like all the cosy winters of my childhood and adolescence.

Strange experience of memory loss or confusion 4 weeks after surgery

Ben told one of the doctors last week that I had a strange episode on the Sunday before, an episode in which I sat on the couch in the verandah with him and the boys and apparently had no memory of having had surgery in Melbourne, despite the baldness and new scar (and ongoing mild pain) on my head. I have no memory of this incident of confusion or impaired memory for recent events, and it doesn't make any sense to me from my background in neuropsychology and 16 years in working in an epilepsy surgery program. Ben thought it was an absence seizure, but my understanding of absence seizures do not  involve a loss of memory for something that has happened, they involve distraction from the current reality and it's usually difficult for a person having an absence (or simple partial seizure (SPS)) to be involved in any kind of conversation. Children with such seizures are usually thought to be daydreaming. They are utterly involved in the distracting day-dream like experience of the SPS, and cannot easily be brought back to the current reality. To lose autobiographical memory in an ictal (seizure) event is not something I've ever heard about, although post-ictal confusion is often observed, and I've seen it in patients myself, in the rare cases when they had seizures around the time I was seeing them, but it was for the seizure event itself, not for something that happened weeks before. I didn't have a motor or complex partial seizure prior to this event, though Ben thinks I may have had a non-motor seizure before the episode and lost memory as a result of it. The boys verify his account of me sitting in the verandah and not being clear about having had surgery, but I just don't understand this in terms of what I know about seizures. The EEG that he arranged for me through one of my oncologists in the early days of last week was reported to show spike activity in the anterior right temporal region, and was said to be consistent with scar tissue from the surgery, but anterior temporal lobectomies (ATLs) are usually conducted to remove abnormal brain tissue (like hippocampal sclerosis) that causes seizure activity, and I've never heard of people having seizure activity as a result of an ATL. ATLs are done to prevent further seizures, not to cause them. The reported recording of spike activity in the anterior temporal lobe  makes me worry that there may be formerly unknown abnormalities there, so I'll call my oncologist tomorrow and see if we can arrange another MRI. I don't need any new tumour growth. It's bad enough to realise that the bit that the surgeon couldn't resect 5 weeks ago counts as an "inoperable tumour", despite the optimism about Avastin shown by both him and the oncologist. I was grateful to the Melbourne neurosurgeon for saying that he didn't want to remove a tumour wrapped around a blood vessel near my midbrain in case it caused paralysis - that was an honest explanation that I could appreciate. It was my overly active mind that recently told me that it was an "inoperable" tumour, and that this doesn't fit into a good kind of thing to have. 

I've done okay after my first treatment with Avastin around April fool's day, although I'm annoyed at my ongoing levels of fatigue; by my need to sleep in; my disturbed sleep most nights; and my difficulty to multi-task and concentrate on everyone in the family, even one at a time, when I am awake. I'm also still frustrated by my difficulty in completing all the household tasks as quickly and efficiently as I used to, and in needing to ration my energy and concentration resources for the things I think are most important. These frustrations aren't major (I understand the basis for them), but they exist, and I'd rather they didn't bother me or my family. Such changes in my ability to function as a mother and housewife have caused ongoing difficulties in our family, and although I am educated enough to calmly stand up for myself, and to try to educate my husband and children, it's not an easy task, and I wonder how it would be for patients who are not neuropsychologists. There has been precious little education of myself or my family on what to expect after surgery, possibly because they assume we know it all, after having been it before, or possibly because I'm a neuropsychologist and Ben's a doctor. However, a cancer-care-coordinator giving some advice to both of us together, would be a helpful thing, and maybe they could talk to the boys about any concerns they might be having.

I haven't had much experience with brain tumour patients - where tumours may be benign or highly malignant - but I've learnt (from reading brain tumour forums) that the potential for recurrence, even in low-grade tumours, is an ongoing source of concern for patients and their families, and that there's no such thing as  good brain tumour, or even a good form of cancer. While conditions like MS and dementia can cause chronic deterioration and eventual death, there are various treatments available, and GBMs seem to be more random and quixotic, and potentially rapidly fatal (I try not to dwell on that, or even think about it. Denial is a fantastic defines mechanism). Despite my knowledge of my condition, my insight into my attentional difficulties, my understanding of my fatigue and need for rest, and my attempts to educate and inform my family about these things, the changes brought about by my multiple tumours and surgeries have been difficult for my family to handle at times. We'd probably all like things to be the way they were before I had any type of cancer, but we don't talk about that openly. We go on pretending that nothing much has happened, and being glad that I'm out of hospital, after spending more than 150 days and having at least 15 admissions for surgery, diagnosis, or infection in 2013-2014.

The changes to my sense of identity from having had breast and brain cancer, and from not being able to work for the past 2 years have been unexpected. I had no true idea how important my career and work were to my sense of self before I as diagnosed, and it's not something I've explored in any great detail before now, because I'm simply trying to get by and stay healthy, happy, and connected to others, and to even recover, if I can. 

We'll be travelling early next week to see the neurosurgeon for a review, and to see a radiation oncologist for stereotaxic radiotherapy at a private hospital the next day. He seemed optimistic that I'll only need one treatment. It's all happening so quickly, it seems very surreal, and I have a strange sense of "jamais vu" ('never seen' -  kind of the opposite of deja vu) about a lot of what is going on at present. 

If I could remember my dreams and write them down, I suspect people would be fascinated. My dreams are very strange  and often remind me of some of the most bewildering fantasy stories I've read. The chaotic and churning melody and tempo of the song "love is a battlefield" comes to mind as an example of the disconcerting soundtracks playing in my dreams. The music in the song, not the words, are what I'm talking about - a kind of rhythmic, churning, structured chaos. The scene featuring the Dementors in the stormy Quidditch match in the Harry Potter and the Prisoner of Azkaban movie is another example of my disturbed sleep-scape.  Similar scenes that mirror the alteration of reality and confused emotions that feature in my dreams include the later revelation in that movie, set in the Shrieking Shack, that Scabbers the rat was actually Peter Pettigrew, a wizard who betrayed Harry's parents. Similarly, the scene in the cemetery in Harry Potter and the Cauldron of Fire, where Lord Voldemort came back to life after Cederic Diggory was murdered, reminds me of the strange kind of dreams I'm having, not that I'm dreaming myself in HP scenarios, just that my dreams represent an unexpected version of reality. Maybe I shouldn't watch any more Harry Potter movies for a while, though it's not like I've watched them repeatedly, or even very recently. I was telling the boys tonight that the books in that series are the only novels I've ever read more than two or three times (except perhaps, Douglas Adams' Hitchhikers Guide to the Galaxy series, and his Dirk Gently's Holistic Detective Agency books). 

Time for sleep and restful dreams of peaceful beaches with warm sunlight, gentle breezes, friendly people, and laughing children. Or of beautiful, still, green forests with dappled light. With gentle, happy classical music by Mozart or Vivaldi playing in the background, or even some early Enya or similar New Age music (excluding the dreadfully repetitive and saccharine 'Orinoco Flow') ... drat! now I've done it! I've created an ear-worm just by mentioning that song. Time to think of something else, and soon!.

Downs and ups around Easter - some of the effects of all this on our family

Easter Monday.
We've just returned home from an Easter long weekend in Hobart. It's the first time I ever remember travelling the 250km journey between Hobart and Launceston in the dark (apart from walking about 50km of the distance between Ross and Launceston on our year 12 walkathon overnight in 1985: a school tradition initiated by JFK's statement that a man should be able to walk 50 miles (80 km) in 24 hours). Travelling that road at night wasn't enjoyable either time. The road is having a lot of work done and the lanes are poorly visible in the dark, especially with the light rain that fell most of the way home. There was a section closer to Launceston where the reflective markers they call 'cats eyes" are red on the left, and orange or white in the centre line, which made it easier to see where we were supposed to be. I didn't realise how much glare was reflected back by the "keep left" and other road signs in the night, having done most of my after-dark driving in well-lit suburban Melbourne before we moved back here 5 years ago. My eyes are much more sensitive to bright lights or glare, and my ears to loud noises, after the two recent surgeries.  I felt sorry for the driver of the Cadbury's chocolate milk truck who we finally passed before we reached Launceston. I can see why there are so many accidents on country roads after dark, especially when the lanes aren't clearly marked or are disrupted by road works. I've told Ben I never want to take that trip after sunset again. It's a pleasant drive during the dawn or during the day, but it was very unpleasant in the dark. I couldn't make myself sleep in the car, though I was tired enough to do it after we left Hobart today. It was a pleasant weekend down there, staying at Ben's friend's flat near Blackman's Bay. We managed to walk along the beach each day, and visited two of my cousins and two of Ben's work friends between Sunday and today. The boys had fun getting to know some pets  - one cat, 4 dogs, and a chicken - and enjoyed playing Uno Stacko with their 3 female cousins, but it was a happy contrast from our awful trip down there on Easter Saturday.

We'd had an enjoyable time at lunch at Mum's on Good Friday, but I slept poorly that night and "dared" to sleep in until 10am on Saturday when we planned to travel to Hobart. I was relaxed about our departure time because there was no need to get there at any certain time. I packed toiletries for the boys and myself in the morning, but when I went to pack my own bag, I found it full of dharma books after we'd moved furniture in our room the day before. I had to find somewhere to put the books because you can't leave them on the floor. I also had to pack my own bag, which only took a few minutes because I learnt to pack quickly in my 4 years at boarding school, where I went home most weekends. Even though Ben asked the boys to help pack the car and gave them things to take to it, they sat with arms folded in the back of the car accusing me of making everybody late. My father used to display similar impatience to get moving throughout his life. I wonder if it's a male trait?
We didn't know until we arrived in Hobart that they'd left their clothes in the suitcase in their bedroom before we left. which resulted in an unplanned trip to Kmart to get some spare clothes and toiletries for them on Saturday evening. (not a bad thing, for the crisp white t-shirts and discovering the lunar eclipse on the way home). The kids were also cross that their bathers had been left behind, but the weather wasn't warm enough for swimming in Hobart over the weekend. It's good that they wanted to swim at the beach, but they're only kids, and don't realise how their sullen attitude affects their mother. (it makes me utterly miserable, after all I've been through. It's hard to muster the energy to deal with what is probably normal childhood behaviour)

I found myself wondering if life was worth living in our horrible day as a family during the journey to Hobart on Saturday. I couldn't cope with my children and husband resenting my need for sleep (I do not want to sleep in regularly, I do not enjoy sleeping past 9am, but it's something my body seems to need while I recover from surgery). I hated having David being sullen and resentful towards me for "making them late", and I hated the signs that Nathaniel might join his brother in adolescent angst in the near future. I understand that adolescence can be a difficult time for boys as well as girls, but I've been trying so hard to deal with having a potentially fatal form of brain cancer, and not talking to them about it in too much detail, it was very hard to deal with all the blame and resentment I was getting on Saturday. I tried very hard to stay calm and to keep my mouth shut, because my attempts to talk to them about how we can get on better seem to be perceived as some sort of nagging. Ironically, I've frequently told them that "nagging" is the way people justify ignoring things they've been told more than once before.  It's possible or likely that their angst reflects their anxiety about my health status, and I'm beginning to wonder if it would help for them to see someone, but I don't want to do any harm to them by sending them to someone who turns out to be inappropriate for what they need. I'll have to find out what's available and suitable.

Luckily, the time we spent with family and friends in Hobart the next day reaffirmed for me the benefits of social interactions, and I had a fantastic conversation with the wife of Ben's friend about all the dogs we've had, and the stress of an older family member pressuring us to have our Tibetan spaniel euthanised  in 2012 before we knew what was causing his painful red and scaly skin condition. I argued against the person who advocated euthanasia, saying that we wouldn't consider that until we knew what was causing his problems. Maybe we could treat and cure him if we knew what it was. A skin biopsy evenutally demonstrated cutaneous lymphoma, which was treated with chemotherapy, and his skin symptoms improved. I believe he then developed lymphoma of his central nervous system, because he became blind and confused within our house, often walking in circles and getting stuck next to furniture. Two different vets told me that blind dogs don't usually get stuck between furniture, and that his regular tendency to get stuck was a sign of confusion. The euthanasia advocate took it as a sign that we should have had him put down, but I checked the internet for the criteria used by veterinarians to evaluate quality of life in dogs. He didn't meet any of their criteria. He still had an appetite and enjoyed food and water. He enjoyed affection and time with our family, and he wasn't in pain. His personality had even become less anxious, with his confusion and blindness seeing him not barking endlessly at strangers or other visitors for the first time in his 15 year life. According to those QoL criteria, his quality of life was not so bad as to justify euthanasia. He finally passed away after my second craniotomy in September 2013. Having that conversation about dogs with our friend in Hobart allowed me to evaluate my own quality of life, and I realised that although I didn't enjoy having three grumpy and resentful males in my family on Saturday (friends tell me it's normal), my quality of life is pretty good. Ben and the kids are understandably worried about me, and just want things to be normal again, and I empathise with their emotions. I enjoy my food, I love the company of others, I'm not in significant pain, I enjoy affection, and even though having an irritable, quarrelsome, and  argumentative family at times is not my ideal, I hear that it's pretty normal for most families. I just need to enjoy each moment and not think too much about how I'd like things to be different, because my efforts to tell them how I'd like them to behave is often interpreted as nagging or haranguing, where I'd probably be better changing my own behaviour, ignoring the moodiness, using humour, and giving them lots of compliments on the many wonderful things they do and their good personality traits. David is starting to exhibit several of my departed father's mannerisms and tendency to enjoy gently stirring others (Nathaniel) or making quiet and subtle jokes. It's very charming to witness.

24 April (written after midnight). things have improved quite a bit recently, with Nathaniel remembering a tickling rhyme that my father taught me when I was a little girl, and Nathaniel hadn't had it since his pre-kindergarten days: "Round and round the garden, like a teddy bear. A one step, a two step, a tickley everywhere". It's become a bit of a regular pre-bedtime activity, and he giggles so much when he's tickling me, it's a delightful game. David is still absorbed in his transition to adolescence, but we've had some good talks. And I've discovered, yet again, that 230-430 am is a good time to talk to Ben, because he's relaxed and sleepy after a hard day at work. His job is making it hard for him to recruit much-needed junior medical officers or registrars, including one who is outstandingly good, and it's even difficult to get approval to recruit locums to cover the doctors on leave. He doesn't need that kind of ongoing stress, and it is very frustrating that non-clinicians in human resources are involved in blocking his efforts to get the staff he needs to run the service. I remember how inspiring he was to work with when we first met. He was cheerful and very skilled and competent, and made an inspiring team leader in case conferences and other meetings, even though he was still a registrar. We discovered a common love of knowledge and learning about diagnostic and other professional skills, and it's a shame he's not more involved in training registrars, because I learnt more about mental health and diagnosis from him than I did from anyone at university. His love of learning was contagious, and we almost have a library of textbooks in his field, which would be fantastic to share with registrars and residents. I remember telling one of his consultants that he was one of the best clinical supervisors I'd ever had.

Ok, it's 124 am. I really must turn this off and get to sleep. Please let me know if you're reading by using the contact by email gadget on the right. This blog has had another 3000 page views in the month since I made it accessible to search engines (over 22K by now), so I'd like to know who is reading it.

Avastin treatment #2 looking back, looking forwards, staying grounded

Thursday 23 April, 1033pm
It's been another sunny autumn day in Launceston. I had to see the GP this morning for a checkup, and I thanked her for requesting breast biopsies two times in 2012 when I first found suspicious changes in my left breast. She said she based those referrals on clinical symptoms and my presentation, but they weren't done because the ultrasound and mammogram were normal at the time. It was only in January 2013 that the mammogram found a lump (after a year of my breast looking increasingly different because there was a 7cm tumour growing in it). I had a mastectomy on 31/1/13,  followed by chemotherapy (CT) and radiotherapy (RT), marked by 5 episodes of febrile neutropenia with hospitalisations so I could have IV antibiotics. One of those admissions was the last time I had a sinus headache, like the one that's been bothering me the last few days. They turned down my request for sudafed and antibiotics to treat the sinus headache, which was the first I'd had in a couple of years., but they sent me for a CT scan of my sinuses, which was reported as normal. At the time, I remembered a patient of mine who had been diagnosed with a  right frontal brain tumour after years of right-sided headaches, only to have them treated by a chiropractor, to no avail. His tumour was only detected when the chiropractor did a skull x-ray which showed the brain was looking abnormal, and he was sent to the hospital where the tumour was removed. I wondered when they scanned my sinuses if they should also scan my brain, but I didn't want to look neurotic, so I didn't ask. The first two tumours were found a few months later, just after the RT for my breast CA was completed, so I wonder if anything would have been visible if the brain had been scanned as well as the sinuses?

Such wondering is purely academic, and rather futile, of  course. She asked if I'd had any other scans of my remaining breast, and I told her about the 2 MRIs last year that were normal. I said I didn't want another mammogram, because they hurt and they didn't pick up anything the first time around, and that I want a prophylactic mastectomy as soon as I can. I'd wondered if I could have it at the same time as the brain surgery in January, though not seriously, and her grimace suggested she agreed it wasn't a good idea.

I had my second Avastin infusion last Monday, it was done over 2 hours, so I was able to dose off in the recliner chair in the chemo suite. I was feeling very tired after a bad night's sleep the night before. I woke to the lovely revelation that dwelling on regrets, hurts, or annoyances from the past is not helpful, because the past cannot be changed. However, examining the past can help us learn from our mistakes so that we can hope not to make the same mistakes again.

My life has been flashing slowly before my eyes these last few months, accompanied by a sense of foreboding ill in December (which proved to be correct after the new hippocampal/amygdaloid tumour was found in January) and there have been many soothing blog posts composed in my sleepy mind that I haven't yet written because I've needed to rest. I'm going to start writing some of them soon, but my task for tonight is to copy and paste from my increasingly detailed Facebook status updates that have been serving as mini blogs for me and my friends and family on facebook. However, a few of you have emailed me expressing concern at my recent silence, so here's my update for today and some of the days before, to reassure you that all is well.

Facebook 23/4/15, (around 8pm) I've just spent a wonderful few hours with my cousin Fran, chatting about old times, finding out things about the family that I hadn't heard in ages. It felt like the old days when Mum and Dad used to take us to see the many uncles, aunts, and my 31 first cousins (not all at once, of course!). I felt like a true Bardenhagen again, if that makes sense. She also explained that "porking" is an old-fashioned (1960s) term for kissing, thus dissolving the image and concern the term caused for me when her sister Christine told me they caught my father "porking" my mother in someone's pantry shortly after they'd met. ROFL! What a relief!

PS I've found that talking to people is a fantastic and free way to feel happy and energised again- after being stuck in the house for over 2 years, it's been wonderful to get out and see people again this week. On Monday, I saw a few old workmates when I went to the hospital for my Avastin treatment, on Tuesday I spent 2 or 3 hours having lunch with a friend, and talked until my jaw was literally aching. I came home singing happy songs, and Ben was wondering what had come over me. I'll have to call my oncologist in Melbourne who zapped my remaining tumour last week, and tell him I'm feeling like my old self again. Fran commented that if I was taking anything to make me feel so good, she wanted some of it. Love to all of you
Fiona

Facebook 21/4/15 (with tonight's additions in italics)

That's funny. A quiz said that the song "Happy" by Farrell Williams sums up my life and personality. It said I'm a very optimistic person.

(I prefer "don't worry, be happy" a song that came out of no-where when Linus and I returned to civilisation in Bali (and discovered the Berlin Wall had  just come down) after our intense romance when we met in Melbourne 3 weeks before we left for Indonesia for a 3-week holiday. He had a bohemian nature and insisted to people we met that we weren't boyfriend and girlfriend, but that we were lovers.)

 I've been feeling happier today than i have in 2 decades, thanks in part to a great sleep last night, to catching up with several old friends recently, and to realising that this new radiation treatment might mean that i dont have to have surgery again if the little buggers come back. :)) we can just blast them with gamma radiation, i hope. Thanks everyone, youre fantastic!

(I caught a glimpse of  photo of myself with one of my neuropsychology students at her wedding a few years ago, and I remembered that the exuberance I'v been feeling lately has come from seeing old friends. It's not like I haven't been happy in the last 20 years, there were lots of happy times when I was working at St Vincent's and Victoria Univerity, but family commitments had affected our level of happiness: Dad's slow decline from NPH over at least 8 years) and watching Ben's father deteriorate after two strokes and some heart attacks, which saw him in high-level care in a nursing home, plus looking after Ben's mother for 8 years. Seeing my cousin Marita slowly decline from metastatic cervical cancer was a tragedy as well. So it feels fantastic to be feeling energised and back to myself again, and to realise that I only need to ensure regular social contact with people to reap the mood-enhancing benefits of socialisation.

Facebook status update, 19/4/15

Had a great day yesterday- 4 friends came for coffee at Doncaster, including one from the MSO chorus. They're doing Beethoven's 9th symphony this week, I'm so jealous! I'll aim to rejoin the chiorus if we ever move back to Melbourne. Then we had a scintillating dinner with my old housemate Debbie, and my old school friend, Farah. Deb and Farah hadn't seen each other since our regular evening meals leading into late night mah jong sessions in 1990-91, and they talked almost nonstop, almost like old times, only this time there was the shared experience of motherhood to discuss. Deb's partner, Matt, listened on in amazement. I thought Deb and I talked a lot when we all went on holiday together after xmas, but Farah and Deb had 25 years to catch up on! A very happy night, which started with Farah and I getting lost in the dark on an unknown route, and laughing our heads off. Time with old friends is fuel and joy for the soul. Hoping I get to spend some time like that with many of you soon. Need to sleep now, early start in the morning, jetstar flight home at 1030. Strangers keep telling me lately that I think too much, but they don't know me, I've hardly said anything to them, and they don't know of my daily efforts to still my mind and bask in the tranquility of inner peace through various practices. A woman at a mind, body & spirit festival recently told me i needed to go back to being myself. Well, here I am! The girl who often talked until late in the night. I'll stop now, before I start to babble...but in my defense, I do have a lot to think about, especially lately, and I'm glad I'm still here to do it. i might just call it "the joy of thought"

In response to this status update, Sarah, my boarding house roommate, responded: "Now I know you're 'back' - if you ever stopped talking about everything all at once, then I'd know we were in trouble!

I remember a typical night in Grade 9 and you were excited about boys and wouldn't shush up so I got you to count the stars - the first one to count 1 million won! We both won, you counted the most stars and I got some sleep! Haha! Happy memories xx"

I'd forgotten that incident, but it seemed familiar, and I remembered that it must have happened after a line dancing or square dancing session with the co-ed school with which we were to amalgamate the following year. Lots and lots of boys for girls who had been sequestered into a single-sex school, and lots of fun from the dancing, even though my outfit cause some ridicule with my home-made red and white gingham blouse and white circular skirt over navy blue stockings and white shoes. Dolly magazine said gingham was in fashion that year, not that the clothes were sold anywhere in Launceston, and I couldn't afford them anyway. Mum and Dad had 3 girls to raise, and we were given an allowance of 15 to 20 dollars for clothes each term. So we learnt to make our own clothes, just like mum and Aunty Betty did in the depression.

Update 17/4/15, 4pm: 

Treatment done, feeling good, waiting for sashimi bento box for lunch, then relaxing trip back to montmorency by train. They said i'll probably be tired tonight. I had trouble sleeping last night, so I'm ready to have a nap now. Love and light to all.

16/4/15

(on the way to the NGV) Thankful that my family found things to enjoy at the gallery. Feeling overwhelmed by the beauty of paintings and etchings and aretfacts made by people hundreds of years ago. They would never have guessed that their work would have been on display in a gallery in an unknown continent centuries into the future. I feel like iI'd passed through a wonderous time machine that gives glimpses into the past. We are so blessed to be alive, and to live in this era

Thankful that my family found things to enjoy at the National Gallery of Victoria (NGV). Feeling overwhelmed by the beauty of paintings and etchings and aretfacts made by people hundreds of years ago. They would never have guessed that their work would have been on display in a gallery in an unknown continent centuries into the future. I feel like iI'd passed through a wonderous time machine that gives glimpses into the past. We are so blessed to be alive, and to live in this era. 

The beauty of the works and the sense of being connected to people and events from the time made me feel overwhelmed and I started crying. People had been giving me funny looks all day because I had a black eye after fainting and landing on my face in the bathroom after a lovely hot bath. I hadn't thought to wear sunglasses, but you can imagine the looks that we got when I was crying at a table, the boys were comforting me, and Ben was standing there with his hands on his hips, not understanding that my tears were related to the art, and that all he had to do was sit beside me and comfort me himself. It was a stressful time for him. I know he loves me and cares about me, but the neurosurgeon's comment that the surgeon in January had only taken a biopsy had made him quite perturbed. I've realised that the surgeon must have taken more tissue than just a biopsy, because there wasn't any oedema after the first surgery , the scan was reported as showing no significant residual tumour, and I wasn't told to take dexamethasone to reduce the oedema, as happened after the right ATL on March 1st. 

16/4/15 We dined on the best Thai food I've had out of Thailand at a humble place called Lime' n'Chilli in Watsonia.Farah drove me there, and we got lost several times, resulting in much laughter, which probably wouldn't have happened if we'd been with either of our husbands. I miss the old days of finding one's way around with a map. The iPad maps app is annoying and hard to read with my poor eyesight, though I found my reading glasses today (23/4) The food at Lime'n' Chilli had Mindblowing flavours and textures, and the boys loved their first ever coconut juice so much, they both had seconds.Far healthier for them than soft drinks. We just watched a profoundly sad indian movie called The Lunchbox. It was set in Bombay. Ben, Fowzia, and David said you had to have lived there to "get" the movie. I don't lnow how that would help understand anything anout a movie about profoundly lonely and unhappy people who don't seem to have close relationships with others, even though they'd presumably like to. I could see that nostalgia for Bombay made it special for them, but it was still very sad.

Thanks to all of you, my facebook friends and family, even the ones I've never met, for giving me a sense that I'm never truly alone, and that i am loved and cared for by others. I hope you understand how much love from all these wonderful souls will pull you through 

• 
  

  FB 17/3/15

  2 weeks and one day since my second brain surgery this year. Pain is abating, but fatigue persists. Slept in bed nearly all day yesterday, and again today. Got up and had a shower and some cereal to eat 40 minutes ago and I'm exhausted already, after being on my feet for only 40 minutes! I'm so grateful to be alive and without major physical or cognitive impairment after this last round of surgery. The unconditional love and support given freely by others has been wonderful, and has helped me in my ongoing mission to stay stong and positive and to defeat this thing. Thankyou, every one of you

  
  

  FB 24/4/15, 1214 am

  This has been an interesting exercise. I hadn't been able to write on this blog much because we were in Melbourne and away from reliable and secure wifi access, and my phone isn't suited to much typing. The font is too small for my poor eyes, though I'm hoping that finding my reading glasses today will start to help me.

  The good thing about posting detailed status updates on Facebook is the number of likes and comments from friends. In contrast, I can look at the stats page for this blog, and see that it's now had over 20,000 page views, but I have little idea who's reading it, unless you email me using the contact form on the right. 

  
  

  I've been through some tricky times in recent weeks, where I've felt that my life has been turned upside down, and I've realised that this darned thing could kill me in the next few years, or less. However, it has been a relief to realise that the stereotaxic radio surgery could be used to zap any new tumour with gamma radiation and hopefully bypass the need for invasive surgery. The Avastin seems to be going well (2 down, 4 to go), with no side effects that I've noticed. I wrote an email to some friends about how I was feeling and some strange experiences I'd been having, so I'll find it and share with you in a day or so.

  
  

  I must post this and sleep now, it's after midnight, and I'm getting tired.

  
  

  Best wishes to all of you

  
  

  PS if you're an Australian neuropsychologist reading this, a friend told me that  some people expressed confusion about my recent self-disclosure in an email after a typo-filled response to another email related to activity-based function. They said that they didn't know if I was writing as a friend or as a patient. I thought I was writing as a friend/colleague/neuropsychologist, who had also had experience as a patient, which would hopefully provide information that might help many of us improve our clinical practice and the way we relate to patients. For example, I had a lovely traditional chinese medicine (TCM) massage and foot reflexology session in Launceston today. the girl who did it is out from China and studying nursing at the local university. I told her that some of the most pleasant experiences I had in hospital were when doctors or nurses would put a gentle hand on my foot, ankle, wrist or hand, and this made me feel like a person again, compared to the impersonal and frequent inpatient experience of only being touched for regular daily observations (blood pressure cuff, thermometer, pulse oxometer, cannulas for blood tests) - the tests are so frequent and clinical, it feels very depersonalising, and a little human contact with their hand on mine , or on my ankle through the blanket, caused me to sigh in relief, I can still remember the feeling. It's consistent with research showing that hand or foot massages can be very therapeutic in terms of mood, recovery, and other good things in hospital patients, particularly the elderly or the chronically ill. I believe that hospitals should allow massage therapists to provide hand or foot massages, in the least, to suitable patients. I'm going to start having at least one TCM session each week. It felt like returning to my old self again. I've hardly had any massages between 2009 and this year. 

  Ok, sleep is calling me. Good night, and please email me i(using the gadget on this page) if you have any questions or comments, or would just like to drop me a line.

  
  

  
  

  
  
• 
  

Commemorating, not celebrating, ANZAC day and Gallipoli

http://www.solidarity.net.au/highlights/nothing-to-celebrate-in-anzac-the-bloody-history-of-the-british-empire/

This is a fascinating, sobering, and tragic article, drawing together many facts that I've encountered over the years. Many people will probably be offended or confronted by it, but it's a must read, now that we're all adults. I don't remember ever being taught at school why we went to Gallipoli, other than that the British asked us to go.

Did you know that the British cut off the thumbs of the master weavers in India to cripple their weaving industry, which was second to none, in order to bolster the british weaving industry? Lest we forget the young (and older) men of Australia and New Zealand, and other countries, including Turkey,  who fought and perished at Gallipoli in a futile conflict. 

I met a pleasant man in a cafe yesterday, and he said he was from Turkey when I asked about his accent. I also met a chirpy pathology nurse who took my blood at the GP's rooms. I told them both about the article, and they gave their own similar perspectives on the awful futility of the Gallipoli campaign. As a mother of two young boys, I can't imagine the trauma experienced by the mothers of all the people who have been lost in any conflict throughout history. My boys tell me that they'd get their boat licenses if they joined the Navy, but I tell them that if there's ever any conflict, the Army, Navy, and Air Force would expect their former reservists to join up, partly to pay back the training and experience they'd received. The boys are so naive. I'm distressed by the thought of them ever being involved in armed conflict, where they may need to harm others to defend themselves or other people, let alone attack other people as part of a military operation.

leading up to stereotactic radiosurgery

Friday April 17th.

It's 1040pm, about 10 hours after I had my stereotaxic radio surgery today. It's a form of radiotherapy that is more precise than the conformal RT I had for my first two tumours. The oncologist said it fuses the CT and MRI images and allows a highly focussed dose of gamma radiation to precisely target the residual tumour. He showed us lots of before and after images where the treatment seemed to have resulted in the tumour disappearing completely. I hope that happens for me. The chirpy nurse who told us about the treatment said I am likely to get tired, and walked us through an information sheet on brain RT for the first time ever. If I get a headache that becomes increasingly severe despite taking paracetamol, if I get nausea, vomiting, unsteadiness in my movements, or other general or focal neurological signs, I have to call the after hours service at the hospital and possibly return there.

Nothing like that has happened yet, and I had a good sleep this afternoon, after sleeping very poorly last night.

I haven't been feeling overtly anxious, but I haven't been feeling right these last few days. Any tensions or arguments, or potential arguments, within our small family unit have been very distressing to me, and have made me wonder, at times, if life is worth living. Of course it is. I've had a wonderful life up until this recent recurrence of GBM, and I don't want it to end. I want to continue to enjoy the company of friends and family, and to experience this wonderful world that we live in.

We came to Melbourne on Monday evening, after Ben finished work, and are staying with his friends Fowzia and David in Montmorency, a suburb near our old house in Eltham. They are being very good to drive us around to various places, and have been looking after our boys while we've attended appointments. Fowzia is a spectacularly good cook, so we've all been enjoying ourselves at the dinner table, including David and Nathaniel, who have been sampling and enjoying a range of different dishes. We had dinner at a fantastic Thai restaurant in Watsonia last night, where the food was better than anything I've had since I went to Thailand in 1990.

Tuesday was spent going to see the new oncologist at the Epworth private hospital in Melbourne, where I had a CT scan for him to do treatment planning for today, and where they made a new mask for the treament itself. The mask was lime green this time, and had a base structure that reminded me of Hannibal Lecter's in Silence of the Lambs: horizontal bands over the forehead, upper lip, and chin, and vertical bands down the middle and sides. They put a hot plastic sheet over all of it and it set into shape. Like the first one in Launceston, I was able to breathe and see through the diamond-shaped holes in the plastic. The mask clips into the headrest on the treatment table, and prevents the head from moving during the treatment. I found it very firm when they put it on today, and although my jaw had been relaxed when they made the mask, it felt extremely firm on my chin. It was more comfortable if I held my jaw shut, but I didn't want to risk moving my head even a fraction from the position used for treatment planning, lest the gamma radiation miss its target zone.

Wednesday was spent on a trip to the city - we took a 2-hour cruise on the Yarra river in the sunshine. It went all the way down to the docks, and back up to Heron Island, with a good commentary given by a handsome and tall young man from Cleveland, Ohio. He said he'd been working there for a few weeks, and did an impressive job of remembering many facts. Travelling on the river reminded me of my first year at uni, when I rowed in the bow seat in the first 8s for Queen's College. Rowing (usually starting at 6 or 630am) was far more peaceful than the cruise, with the mix of many chattering voices.
The cruise made me realise that we've spent too little time doing pleasant experiences in recent years. Experiences like the cruise, or even taking the train in Melbourne, are more meaningful than eating out at various places, which we've had to do a lot recently because I've not been up to cooking

I caught up with an old friend at the National Gallery for lunch on Thursday, and Ben and the boys found some things to enjoy in the Gallery, which saw me flooded with unexpected tears at the beauty of paintings and other works which were created by people in Europe, Egypt, Asia, and South America hundreds of years ago. It felt like being in a kind of time machine that allows glimpses of the past. I've sometimes been moved to quiet tears of awe in art galleries, but this was the first time I've ever felt overwhelmed and cried openly. David and  Nathaniel sat next to me, wrapped an arm around my back, and patted ny shoulders and made soothing noises, while Ben looked uncomfortable because peopke were watching and I had a black eye after fainting and falling after getting out of a hot bath last week. Apparently  people had been giving him funny looks all day. I had no idea,and hadn't   thought of wearing my sun  glasses to hide the bruising. Poor Ben, this time has been very stressful for him.