on having memory, attentional, and problems

It seems supremely ironic to me that I'm having some difficulties with my memory, given that I studied neuropsychology to better understand the functioning of the human brain, in order to help people with brain conditions and their families or carers to understand and deal with the changes they were experiencing.  I've been surprised by my recent experiences with fatigue, regular distractibility, reduced concentration, reduced tolerance of noise and bright lights, memory problems, and their impact on my family.

I'll try to write more tomorrow. I need to turn in.

Back in Melbourne (Saturday11 July, 934pm)

Feeling a little overwhelmed at being back in Melbourne, staying at Ben's sister's furnished but vacant house in Thornbury. This is the house where Ben was living with his sister when I met him, their parents were staying with their oldest son, Solomon, in Canberra.I finally met them when they returned, and was impressed by their kindness, hospitality and welcoming attitude, not to mention their willingness to let me stay here during the week and work on writing up my PhD thesis on the days when I wasn't attending the nearby psych hospital where Ben and I met in 1994. I found it very helpful to work on writing my thesis here, Ben's mum would regularly ask if I wanted a cup of tea in the mornings and afternoon, and would tell me that lunch was ready after she'd finished cooking. It helped me to focus on writing my thesis, and to feel accountable for getting something done each day. I found that I was less distracted here than in my flat in Ivanhoe, or in my share-house in Carlton, or in my office or at the lab at uni. So this house has many happy memories for me, and Ben. It's a shame it's smaller than our place in Launceston, otherwise we'd have packed everything up and brought it over here. Instead. Ben packed one of our cars with clothes and other personal effects, and came over on the ferry. The boys and I packed a suitcase each, and flew over the next day. We'll start looking for a house to rent near the boys' new school tomorrow or monday, and I hope we find something soon. It's not that I'm highly attached to our home in Launceston, I honestly would like to keep it as somewhere to stay when we go back there in holidays, or to see Mum, but this place just isn't big enough for the four of us to live like we did in our old place

the whole point of coming over here from Tasmania is so I'll have easy access to specialist opinions and treatments if my brain tumours ever grow again. The boys (10 and 13) are getting a bit too old to be missing out on school when I need to travel to Hobart or Melbourne to see a specialist or have treatment. I hope, and pray, and meditate, each day, that I will continue to stay and function well each day, and that I'll no longer be burdened by the fatigue that's been bothering me recently.

Ben's been regularly irritated and frustrated by my fatigue, and predicting that I'll become an invalid if I keep attempting to overcome the fatigue by sleeping during the day. I certainly don't want to become an invalid, and I'm not happy about how my thighs feel weak and wobbly. I need to walk at least 30 minutes each day and to do some core strengthening work to fight the de-conditioning that has increasingly bothered me the last couple of weeks.

A very good thing about being in Melbourne again is about having access to many old friends, and to Ben's family. I'm hoping we'll catch up with at least one friend and one family member each week. We've already seen two of each, and we will see more family tomorrow, including Ben's mother who lived with us for 8 years, so there is much to anticipate happily here.

It's getting cold now, sitting in the lounge room, even though the gas ducted heating is on. I'm heading off to bed to get warm. I hate feeling cold.

a sunny morning Monday 29 June

it's 854 am and I was woken by my beautiful boys about an hour ago. I would like to sleep some more because I'm still feeling tired. It's not like I didn't sleep well, but my sleep was a little disturbed, and I would like to have another try at getting some restorative sleep out of the way. My left eye has been feeling a bit funny every so often over the last few weeks. It feels a little dry, and if I sit here with both eyes open, I guess I must be experiencing double vision. Things are okay if I put a hand over either eye, or if I close my right eyelid (I seem to be able to hold it down by myself, no hands), but if I open my right eye, everything becomes a mess. I've never experienced double vision before. I thought it meant seeing more than one thing, but when I open both eyes, I'm not seeing more than one laptop. I'm just seeing lots of text on the screen, and it's very hard to read each individual line.

I'm glad I'm booked to see the medical oncologist at 1130 this morning. That gives me 2.5 hours to sleep a little more, have a shower, get dressed, make some juice (celery, pineapple, spinach, apple, and beetroot), and prepare to embark on the day. Ben just found my prescription sunglassess that haven't made much difference. I can read this very clearly with my left eye on its own. It takes a little effort with my right eye alone, but it takes lots of effort with both eyes together.

Back to eyes shut mode and all the prayers, mantras, and visualisations I can think of to get through this thing.

There are still so many things I want to do with this life, and I don't want to miss out on seeing all my family and friends again, or on taking the boys to holidays in wonderful locations. I'm going to keep doing my best to stay healthy and to get through this.

(Dammit! why did the council have to send a roadworks truck to our street this morning? an unpleasantly noisy accompaniment to the start of the day)

A brief update

Sunday 28 June 811 pm

Just a brief update before I turn in. I'm feeling physically exhausted tonight, not that I've done much to deserve it. We had a little walk down at Seaport tonight, to and from a quick dinner at Mud. It's been one of our regular dining places, and it's always good to have a walk along the boardwalk before and after. Our boys were just toddlers the first time we took them there, before we moved down here from Melbourne in 2010, and now we're packing up and getting to move back there. There's only one more week of school this term, and the boys will start at their new school in Melbourne on July 13th. We'll get there the week before, and have to get uniforms and books for the school in our first week over there. Then we'll start looking for a house that's close to the school. I don't know when I'll be able to drive again, so it would be excellent to have something within walking distance.

I've still been troubled by fatigue, a possible side-effect of the Avastin. I'm seeing the medical oncologist tomorrow morning, so I'll ask if there's anything I can do about the fatigue. I'm not like this. I don't usually need to sleep for most of the day, and I can't remember the last time I woke up feeling refreshed, either in the morning or after a day-time nap. I've had long, heavy naps during the day recently, and I haven't enjoyed doing it. There's so much I need to do around the house as we prepare to move to Melbourne. I don't like spending so much time in bed, but I feel physically and mentally exhausted. I try to get something positive from it by meditating, praying, or saying all the mantras I can remember, but I'd rather be up and around, doing the things that used to give me a sense of purpose and achievement.

At least there's no evidence of new tumour growth on the most recent MRIs, and I'm guessing a little bit of enhancement from scar tissue would be expected. I'm doing remarkably well for someone who has had four craniotomies (brain surgery) to remove brain tumours, and for all the radiation and chemotherapy I've had to treat breast and brain cancer.  My latest pap smear results came back reported as mildly abnormal, and recommending I have a review every year, rather than the every two years that is usually recommended. I had a similar result several years before I had the children, and was used to having annual pap smears (a test for cervical cancer), so I don't mind doing annual reviews again. I saw how cervical cancer spread to the liver and colon in a cousin who died 2 years ago, and I don't want to go there.

I wish I wasn't so darned tired. I could fall asleep right now, only the boys are still up and about, and it's only 838pm. But I am feeling drained of energy, and I don't want to irritate the family by forgetting things (asking questions I've already asked before). As a neuropsychologist, I never knew how memory problems caused problems within families. Family members seem to get irritated when I forget things, and also sometimes get exasperated when I get overwhelmed by noise and other environmental distractions in the home or when we go out. I tell them I'm not trying to annoy them deliberately, which they usually acknowledge, but it seems to happen anyway.

Ok. I'm struggling to maintain my concentration now, David lying at the foot of our bed and watching  'Despicable Me' on TV, Nathaniel sitting up between us, and Ben browsing through some model helicopter magazine. My head feels heavy and my energy levels are low, so I'll stop writing now and try again another day.

Good news from the latest scan (Tuesday 23 June 2015)

I had another MRI scan done this morning, and the radiologist let me have a look at it. It was a great relief to see that there weren't any new tumours evident anywhere. There were some small areas of enhancement (possible scar tissue) close to the four areas where I've had tumours removed before (left occipital, right parietal), and there may also have been some small areas of enhancement close to the places that had the stereotaxic radio surgery this year. None of this is unexpected, I think. Things that look white or "enhanced" on MRI scans have greater density than other areas in the brain. For example, blood vessels, scar tissue, and bone, look whiter than cerebrospinal fluid (csf). Swelling (aka oedema) and areas of lower density (e.g. the fluid in the ventricles, or around the hemispheres, or in the cerebral sulci) appear darker on MRI scans than areas of higher density.

So it was a great relief to see the scans after they were done today, and I'll be making sure that the scans are seen by the radiation oncologist and the neurosurgeon in Melbourne. I'm wondering if the areas of scar tissue need some small zaps of stereotaxic radio surgery, and hoping that I'm correct in thinking that there's nothing that needs brain surgery at the moment. I hope I never need brain surgery again.

I had my 6th, and possibly final, infusion of Avastin on Monday. My platelets had risen from 85 last week to 105 today, so they decided it was ok to continue with the treatment. If you look up "side effects of Avastin" on the internet, you'll find a whole list of symptoms, one of which is fatigue.

In an attempt to get over the fatigue, I am going to get on our treadmill every day, and I did 20 minutes at 4.5km/h this evening after dinner. I hope I sleep well as a result, though I did sleep well last night. There are a number of sources of evidence that daily exercise is very helpful in recovering from treatment for cancer, and I'm keep to do it, as I've become quite de-conditioned in my legs lately after a few weeks  where I spent a little too much time in bed. It's so hard to get the balance right. People have told me that I need to listen to the fatigue signals coming from my body, and to respond appropriately, though I've had to learn for myself that too much sleep in the daytime is not helpful.

I'm tired again now, so I want to get some time snuggling up with the boys in front of the television before they go to bed, not that it will happen soon. Nathaniel has just started practising his trumpet again, and he's getting a nice sound for someone who's only been learning for a few weeks. It will be interesting and hopefully enjoyable when his brother joins in on his trombone one day. I might even be able to play along on the piano, if they let me.

Anyway, that's it for a short update for tonight. Sleep awaits me, but I want to get some hugs from my boys first.

Ups and downs (started 18/5/15, edited after that until 25/5/15)

I wrote this Facebook status update on monday 13/5/15:

"Feeling on top of the world after a long sleep in, and a good catch up with cousin Fran and two of my neighbours this afternoon. I feel full of energy and the sense that anything is possible. My most recent MRI scan shows no remainder of the small brain tumour that was zapped a few weeks ago, meaning that any new tumour can hopefully meet the same fate. Sending love to you all." ( this facebook post received 54 "likes" and 23 very positive and happy comments)

It feels kind of weird to say that Facebook has been good for giving me a sense of community and contact with others, in this new world where I was not permitted to drive from September 2013 until I passed my OT driving assessment in December 2014, only to discover another brain tumour one month later, have it removed, then have it grow back again within 6 or seven weeks. Going by the licensing rules, and excluding any seizures (none yet, only a sudden sense of deja vu and an aura on Tuesday night), I should be permitted to drive again 6 months after the last round of surgery. Assuming all goes well, that will be September this year. I've enjoyed a few walks down to the hospital recently,and may even get fit enough to manage the hike up the hills back home.

I've spent a lot of time in bed this past week, largely because of a virus that has given me a recurrent or ongoing sinus infection (nasal congestion, runny nose, sore throat, headaches, resulting in disturbed sleep at night). I've also had body aches and intermittent tummy upsets, poor appetite, and not enjoying my food. At all. Today (Saturday 18/5), I woke at 1030 feeling dizzy and unwell. I'm sitting up in bed at the moment, adding to and editing this post that I started last night.

Friday night(17/5)

I  heard from the Radiation oncologist in Melbourne yesterday evening. He had finally seen my scans. They were originally sent to his old rooms, who had to send them on to his new rooms, but his computer there couldn't open them, so he had to try at home. (I wish he'd been able to view them through the secure online viewing portal to save us some time). He was happy and positive on the phone, just as he's always been. He said he was going to get his technicians to look at the scans, and that I should be able to get treatment next week, according to their schedule. = Good news, I guess.

Regarding my brain, the Melbourne oncologist said there was a small tumour that had looked like a meningioma in the lower part of my left temporal lobe on the scan in February, and that it had grown in size compared to the previous MRI scans. It had grown more quickly than he'd expect for a meningioma. This is exactly what the radiologist said to me after I had the last scans a couple of weeks ago, so that's good - I like consistency. The oncologist wants a copy of the radiology report, so I asked for it to be sent to him. I'd like a copy of the radiology report too, as looking with the scans with the radiologist and then with my oncologist on the same day had left me with the impression that there was a new tumour in the anterior medial portion of my left temporal lobe (limbic system structures like the amygdala and hippocampus). I should have taken some photos of the scans while I had the chance, it would be good to be able to see them and cogitate, rather than rely on memory. 
If there is something growing in my left temporal lobe, I'd like to have it treated as soon as possible, and conservatively as well (i.e. without surgery, if possible). Doing surgery on the left anterior temporal lobe is likely to result in verbal memory impairments and  language changes (such as verbal fluency, confrontational naming impairments, resulting in word-finding difficulties and hesitancy in speech, which might please some of the people I've met recently who seemed to think I talk too much - they clearly didn't know me before all this. an old school friend described me as a "chatterbox" but seems to love me just the same). I've had to explain to David that if I ask him the same question more than once, it's either because I didn't hear his reply the first time I asked it, or because I've forgotten what he said. He's regularly been sighing in frustration words like "I already told you that" or "I've told you already." 

It's 433am and I don't feel like going there in any detail just now. My sinuses are aching and I should go back to sleep. There are just a couple more things I'd like to mention.

Wednesday  20 May 

The past 2 weeks have been marked by good days, and hard days.

 Saturday 9/5 was good because we had an enjoyable walk to Tamar Island, a wetland conservation zone that I've never visited before, and which I'd happily visit each day for the beautiful views up, down, and around the river, and for the sense of a very isolated and historic site. Sunday (mothers day) was the worst I've experienced. I was allowed to sleep in, as I'd requested, but then everyone but Nathaniel expressed anger at me for little things that irritated them. Even Mum got irritated with me for trying to help her clean up some of the accumulated clutter in her house, something she taught me to do when I was a toddler, and which occupied much of my free time spent there on school and university holidays. Ben tells me she was irritated because I "just disappeared" from the dining area after we'd eaten, but I'm sure I said I was going to look for some of my old things, and for somewhere to move the two tall paintings of mine that I'd rescued from 30 years storage in the garage. She'd rather not have them leaning against the rarely used rear door up near the bedrooms, and I later suggested that we put them behind the dressing table in Elizabeth's old bedroom. She'd prefer to lay them on their sides somewhere, or put them back in the garage where they've been leaning under my sister's artwork for the last 30 years. With each of my paintings being nearly 2m tall, I'm not sure where we could lay them in her house. If I had access to a van, I'd bring them to our place in Launceston, though I'm not sure where I'd display them here. My Facebook friends like them, along with the other artworks I've posted there or here, but it seems my immediate family don't like them much at all.

What does this have to do with anything? I sense you ask.

Well, Mother's day is supposed to be a day where mothers are loved, cherished, and appreciated, and spend time with their families.  While I got my share of hugs and cuddles on the day, and gave them in return, and to my mother, I also got irritated responses from 3 out of the four people I saw. Ben told me I was taking things too seriously, but I felt worried that I might have inadvertently upset my family. I didn't set out to do it, I'm not sure what exactly annoyed Ben or David, or Mum, but I didn't want to do upset or irritate anyone. My deliberate use of calm, loving, and well-intentioned words about treating other people with kindness, love, compassion, and respect are now interpreted as nagging and "haranguement" by Ben and David. I'm trying to lay off giving that message, as they've obviously heard it if they think I'm nagging them, but it's awful to hear the kids fighting and calling each other names like liar, idiot, and jerk, in very angry tones. I'm sure it's normal for kids to argue. I remember some pretty heated arguments when my cousin Caroline joined our family in 1978. She was 9, I was 10, and my sister was 8. We eventually worked out some rules of engagement that seemed to help. One of the big ones was not to call each other names ( it only made things worse), and another was not hurt each other physically. I feel incredibly sad and frustrated watching the boys growing up and repeating some of my unpleasant sibling experiences, or just hearing them yell, swear and insult each other in anger. I wish they would listen carefully to my words of advice, and remember them, and save me the distress of seeing them argue, insult, and fight with each other. Again, I guess these are probably normal behaviours for children progressing into adolescence, but they're particularly hard for me to deal with from my situation of having recurrent incurable, multifocal malignant brain tumours, and not knowing if I'll make it to 80, 90, even 70. Some days the children fighting and any other tension within the family gets me down, and makes me wonder if life is worth living any more. Then on other days, I remember that fighting, arguments, and disagreements are normal, and that they all still love me in some way, even if they angrily say I frustrate or irritate them some times ( that's mostly the older one, I wonder if his hormones are responsible) Nathanaiel is particularly affectionate and responsive, thankfully. I can suddenly see that if the nuns in Sound of Music found Maria irritating, then one of my childhood role-models for good behaviour is probably going to be perceived as frustrating by my own family. (Mentally, I'm out there exhilarated by how the hills are alive with the sound of music, and back home, it's "how do you solve a problem like Maria?..." )

I'm doing my best to "climb ev'ry mountain, forge ev'ry stream, follow ev'ry rainbow" until I find my dream, but I have had four brain tumours removed in the last 18 months, and the possibilty that more might appear. There was something on the last scan, as I mentioned before, but the oncologist seemed to think he would be able to zap it, and I'm growing increasingly determined to also get treatment from any clinical trial that might be running in Melbourne. 

My inner Maria and Mary Poppins will come with me. I wonder if other girls of my generation grew up thinking of Julie Andrews as a role model from those 2 roles? Maybe that's why some people, over the years, have perceived me as being prissy and impossibly cheerful. 

Ok. It's now 528am in the middle of the week (13th May), my sinuses are still aching, but I should turn in. These are just some of the thoughts and feelings I've been having this last week. I seriously considered getting professional help one day when I spent the morning trying to sleep, and found myself wondering if Ben was an alien. This happened in the wee hours of the morning, after thinking back to the early days in our own house in Melbourne, and how he used to prefer to sit alone in the lounge room in the evenings, and discouraged me from continuing my regular evening catch-ups with friends. I had often stayed with him  at his family's place while I finished my PhD. We spent our evenings reading books and articles on psychiatry or neuropsychology, after taking his dogs on their evening walks. It was all very innocent staying in his room at his family's house. I found it helped to work on writing up my thesis in his room during the day, rather than staying alone at my flat in Ivanhoe, or getting distracted in my office at the Uni, overlooking the sports grounds and the regularly circling flocks of seagulls. Having his mother and father around during the day made me feel like I had  to be accountable, and made me less likely to goof off with naps, shopping, walks, socializing, or other activities. In 1998, I joined the Melbourne Chorale after returning from my postdoc in Boston (June -December, 1997).  We bought our first house together in June 1998,  so the chorale gave me a reason to get out at night that didn't make him grumpy. I didn't really understand how different we were back then, it was invigorating to get to know someone with a similar interest in the human mind. Our interests were similar, but different, and complementary in our shared fascination for psychopathology and diagnosis. 

Singing in the Chorale gave me the chance to learn and perform Beethoven's 9th symphony from memory on several occasions over the years, and also Mahler's 8th at the opening of the Sydney Olympic Arts Festival in 2000, and for the centenary of Federation at the Melbourne Exhibition Buildings in 2001. Members of the choir were given free airfares and transport to Sydney for the 2000 performance, we stayed at the Olympic village before the athletes moved in, and I heard the voice of our neighbour, a pilot, on the intercom after we flew back from Sydney. I asked the hostess to say hi to him for me, and he asked her to see if I'd like to come and sit with him and the co-pilot for a while. This was a  year before the tragedy of September 11, so I was able to sit in the jumpseat in the cockpit for the final hour of the flight and for the landing at Melbourne airport. There were so many buttons above my head that I made myself sit on my hands so that I couldn't touch any of the buttons. I was surprised and slightly perturbed by the number of other planes visible from the cockpit, and I think I may have returned to my seat just before landing, as I can't remember being in the cockpit for that. A couple of my friends in the choir were jealous that I'd spent so long there. Looking back, it still counts as a special experience. 

so... 548am and I should sleep some more. I'm feeling glad  that I've shared a happy memories of singing and flying from my wonderful life, and that writing has helped me to reframe my recent concerns and experiences in a positive light. I must make sure I schedule regular catch ups with others, as it lifts my mood considerably. I want to write some memoirs for the boys, so they'll have something to read when I'm old and grey, and so that I don't keep feeling it's an  important task that I must do now.

There was something about the universe on tv tonight, and I casually asked Ben which planet he was from. He responded Earth, so I asked him what galaxy that was in. He looked up our galaxy on the Internet to confirm the location, asking me if I was having one of my "unusual experiences"  again. I jokingly said that I'd wondered where he'd come from ( all this was while I was cleaning up the dishes in the adjacent kitchen.)

In case any of you are concerned about my mental health, I've never seriously thought that I am married to an alien in human guise. I'm not delusional or psychotic. I had just been thinking about our life together and all the differences between us. Blogging tonight has helped me to recognise my inner Maria Von Trapp and Mary Poppins tendencies, and to see how they might be irritating to a husband and to a teenage boy. So it's back to sleep for me, so I can continue to climb every mountain, forge every stream, follow every rainbow, and keep enjoying my life and dreams. In the morning, I'll probably maintain the "spoon full of sugar" philosophy, and aspire to be inspirational like the mother superior in Sound of Music. I never realised how much those two movies influenced my personality. I had thought that the TV versions of  "Kimba the White Lion" and "Superman" were my earliest role models, along with Robin Hood and Enid Blyton's characters (Darrell in 'Mallory Towers', and one of the girls (was George short for Georgina?) in 'Famous Five').

143 pm. Back briefly to something I found while cleaning up yesterday: the surgical report from the first of march said that my right temporal lobe was quite swollen, and that there were areas of glioma or gliosis penetrating my internal capsule that he did not want to remove. There's no evidence of tumour in these areas on the postoperative or most recent scans, so I hope that's a good thing. I cried tears of frustration when I read it, and Ben told me off for reading the report in the first place. It's hard to hold a neuropsychologist down from a lifetime of work habits. Reading reports was always fascinating when I studied or worked in neuropsychology, but it's hard to do when they're written about myself. I didn't even know we had it, I just chanced upon it.

How do you solve a problem like Maria (24/5/15)

24/5/15 I wrote earlier about realising that Julie Andrews' characters Mary Poppins and Fraulein Maria had been sort of role models for me in my childhood, and how several people had recently told me I talk a lot after only just meeting me. They do not know how I accidentally learnt too much about the 'facts of life' from reading several "true confessions" magazines in my cousins' caravan one summer day when I was 10, only to find out at school that such things should not be spoken about,  and how I secretly and determinedly spent the next 12 years reading and learning as much as I could about "things we shouldn't talk about", like how to provide pleasure to others, from magazines like Cleo and Cosmopolitan. The main message I kept learning was to respond to others kindly, and to touch them the way you would like to be touched yourself. 

I hoped that I'd one day encounter someone who was interested in me, but that took what seemed like forever. I had a couple of "boyfriends"  in my late teens and early 20s, but they were generally very innocent relationships. The memories make me laugh, now that I'm older and wiser. I won't go into them here, though I must say that the first boyfriend, (known as "Myer man" in college because that's where I met him, my first casual job at uni) was a tall and beautiful young thing from Carrum Downs (south of Melbourne), and we didn't really have anything in common apart from our physical attraction for each other. He took me to a few concerts by bands I'd never heard of ('A-ha'. "Simple Minds" and "U-2"), and he clearly enjoyed the sessions we spent kissing each other after work. He enjoyed the kissing a lot. He was into the nightclub scene down in Frankston, near where he lived, but I wasn't, and although I was a little sad the night he rang me to say he wasn't going to see me any more, it was a good thing that he ended our "relationship". Although he was beautiful to look at, and I enjoyed kissing him, just like he seemed to enjoy kissing me, we had nothing in common, and I was disturbed by his increasing tendency to speak in anti-semitic terms that had apparently arisen from his background as the son of Hungarian immigrants and his attendance at a catholic school. 
All my reading about the arts of love (and doing a short course in swedish massage at uni which resulted in a few innocent practice swiss massage sessions with a couple of the younger boys in my residential college) didn't go to waste. At the end my honours year (1989), which I spent in a share house in Barkly St, Carlton, I met a guy who lived down the street. We went for a swim one day, followed by dinner and gelati on Lygon St. We then spent 19 of the next 21 nights, and many of the 21 days together, before we got into a plane and flew to "Indonesia, not Bali" where we travelled through Bali and Lombok for 3 weeks. We parted on New Years day, 1990. My parents were scandalised by my holiday with this chap. Dad said "he just wants to take you overseas and take advantage of you." Poor Dad didn't know that his daughter was in love and lust for the first time in her life, and had been taking advantage of all the things she'd learnt from her prior avid reading with a guy who was very interested in her mind, knowledge, and taste in movies, literature, and all other things. If people asked, he told them we were "lovers" not boyfriend and girlfriend. He was such a bohemian, and had watched the French movie Betty Blue more than a dozen times by the time I met him. He left our Indonesian holiday on New Years Day 1990, to teach English in South Korea, and to travel through the Philippines, China, and Thailand for the next 6 months, while I returned home to embark on my postgraduate studies in clinical neuropsychology. We both cried copious tears after we parted at the airport in Bali: him on the plane to Seoul, me on my way back to our lodgings in Kuta. After writing many letters to each other, we met in Thailand for a few weeks in June that year. After that he used to park his car outside my place most times he visited Melbourne over the next few years, an ended up staying with me for a night or two. I last saw him a few months into 1994, when we had a magical weekend in Daylesford. The two children at the place where we stayed asked if we had any children, and said that they thought we'd make good parents, which was kind of sweet. ON that trip, he had been speaking about his ongoing love and heartbreak for his latest Japanese female companion, and then asked me if we could be lovers. I didn't know what he meant by that, and I asked if that would involve some form of  commitment or devotion, because I'd spent the past 5 years wanting to be in a  committed relationship with him, but things between us had been marked by his unannounced visits to my place in Carlton, occasional drives together down the Great Ocean Road or elsewhere in Victoria, dinners together,  or regular late nights playing pool at Red Triangles in Brunswick St. I loved him with all my heart, but he did not want to commit to any conventional relationship with me. He wasn't conventional. I don't know what he wanted. I didn't want to continue in the pattern of the previous 4 years, because my heart was heavy and I missed him every time he went away.  I can only remember him being annoyed with me twice: once on the way back from a drive down Great Ocean Road, when he wasn't happy about me wanting him to move up to stay in  Melbourne and be with me regularly, or more often. The other time was when he was heading back to Thailand after a long stay with his middle sister and her partner in Fitzroy (where we regularly played late-night pool at Red Triangle in Brunswick St). I dropped by the next morning before he was to depart with a request for something from Thailand, and he was incensed that I had "ruined" the "perfect moment" we'd had the night before.  I didn't quite understand what the problem was, because I just loved being with him and wished that he was staying there to be with me. I wasn't trying to ruin anything, but didn't know we'd had a "perfect moment' (a phrase used in one of Bruce Chatwin's novels)

We kept in touch over the years, and I still remember the last time I saw him, standing tall and alone on the beach at Queenscliff, while my friends and I departed on the ferry to Sorrento one weekend. I'm still in touch with his sister, and I hope she recovers well from this second round of breast cancer.

Time to sleep, perchance to dream.

update after a wonderful weekend and before Avastin #6

It's been a lovely weekend, I'm feeling happy and satisfied. We took the boys for a drive up Mt Barrow yesterday, and it was beautiful. I remember Dad taking us up there when I was in primary school, the views are incredible, and it's a pity the road isn't sealed, because it's more beautiful than Mt Wellington in some ways. An unsealed muddy road  up a mountain, plus the potholes and hairpin bends was not pleasant. It would be a great scenic attraction for Launceston. the boys had fun trying to crack the ice on a pond, which was frozen solid, and they didn't work out that the collections of soft ice on the vegetation at the side of the road would have made good snowballs. Maybe next time.

Today has also been great. I caught up with four girls I knew from school, one of whom has only come back to Launceston in the past year or so, and I haven't seen her before now. It was 30 years since we last saw each other, and our breakfast after 10 turned into a long catch up for nearly all of us. I'm feeling overjoyed, and hoping to see them again before we move to Melbourne. I'd appreciate it if anyone who reads this blog contacts me, rather than telephoning Ben, if they have any opinions about our move to Melbourne. I'm not writing this blog to create tension between Ben and myself. It doesn't help for people to call him about it. He won't tell me who you are, he just says that lots of people read my blog. I will have to set password access for it if this happens again.

In terms of my health and wellbeing, I have an appointment for my sixth treatment with Avastin at 9 or 930 tomorrow morning. It was meant to be last week, but my platelets were a bit low (80 the week before, 85 on the day). I suppose an anti-angiogenic drug could result in reduced platelet counts, especially if I've been having diarrhoea and bleeding from an old fissure, so I'm hoping it will all be okay tomorrow. I'd been incredibly and increasingly tired over the past week or so, but not this weekend, when I've slept well and deeply, possibly because of taking Melatonin (it's supposed to be helpful with cancer, in addition to helping with sleep), and because I haven't slept much during the day. Ben discovered that Avastin (the anti- angiogenic agent that I've been getting via IV infusions every second week) has fatigue as one of its many side effects. I'm hoping it's done what its meant to be doing, namely stopping any new tumours from growing, because my left eye has been feeling funny nearly all afternoon, and my tongue has started tingling on the left tonight as well. There doesn't seem to be any sensory loss elsewhere on my body, though there may be some on the left side of my mouth. I'll try to see my medical oncologist tomorrow, and I have another MRI scan booked for Tuesday. I've been doing my utmost best to avoid sugar and other carbohydrates, to boost my immune function by having pineapple, apple, carrot, celery, beetroot, and baby spinach juice in the mornings, and I've started taking Percy's powder again as it's meant to be good in fighting cancer. 

I have been in remission for so long. It's a blasted nuisance to feel changes on the left side of my tongue and mouth tonight. I've had 4 lots of brain surgery already. I'd rather not have any more. I don't want anything  new growing in my brain. I have so much to live for, so many things left to finish or to start. So many friends, family, and other people to see. I'm going to do everything I can to do all that I want to do. 

I'm meditating and praying every day, and doing other practices that people have recommended for my health and well-being. I must do some of those things tonight, before I fall asleep. 

Dammit, there seems to be some new form of tingling on my left hand, and foot, just now as I write to you. And now in my right forearm. It's time to turn in and hope the MRI is clear on Tuesday afternoon.

Sending my kindest regards to all of you, family, friends, and others who I may not have met yet. 

Your thoughts, prayers, and messages are appreciated, and I hope to see many of you again soon, or to one day meet those of you I haven't yet  met.

Time to turn in. Wishing you all sound sleep, happy days, and healing from anything that ails you.

Enjoying the sunshine

Wednesday 17 June, 1138am.

This will be a quick update to while I sit in the sunshine on my bed. I spent 10 minutes on the treadmill last night, in the hope that it would help me to sleep well. I'm not sure if it did, because Nathaniel kept moaning in his sleep from the room next door, and I ended up going to cuddle him in the hope it would help him sleep more soundly. It was lovely and warm in his single bed, probably because he had two donnas and a quilt over top of him, and there weren't any dramas about him getting up and off to school on time. I slept a little longer, have had my beetroot, celery, and pineapple juice for breakfast, but I still feel the urge to sleep some more.

A new realisation has hit me this morning - I'm hoping that writing about it will give me the energy I desire, and also provide something useful on this forum.

I never had any inkling of what it was like to be unwell until I've experienced it myself in various forms over the past couple of years, first with the breast cancer (mastectomy, chemotherapy, 5 episodes of neutropenia during the 6 cycles of chemotherapy). Then with having brain surgery 4 times, first for the first two tumours in 2013, then twice again this year for the tumour that appeared and then grew back.

In my training and professional career, I worked at several different facilities in Melbourne, Boston, and Tasmania. I know what it's like to enter a new facility and to start work there, and to become familiar with the various treatment teams over time. Each time, I understood that the patients were going through a range of experiences, which were sometimes distressing to them, but I had no inkling of what it actually felt like for them. Perhaps that's because as a neuropsychologist, I'd been taught to focus on taking a history from the patient, and perhaps also their family/spouse/carers, in order to understand the symptoms of cognitive, mood, or behavioural change that had affected them, followed by me doing an assessment to obtain a comprehensive and impartial understanding of their wellbeing in a range of domains, including cognitive functions like memory, attention, problem-solving, reasoning, language, processing speed, their mood/emotions/behaviour, and other traits or abilities. Sorry, I don't think I've ever described neuropsychology like that before, though it's not totally incorrect. It all seems very pedestrian after what I've been through. The sun is shining on my face through our bedroom window, and I would dearly love to lie down and take a nap to restore my energy levels, like I did for much of the day, to no avail, yesterday.

I will force myself to write some more now, and then maybe I'll write another post later about these revelations.

Having a brain condition like I've had has been very confronting. I'm determined to do my best to get through it, and to live at least another 30 years in a life filled with enjoying the company of others, especially family and friends, and nature. I know that we will all die one day, but I have no desire to do it for a long time yet. Life is definitely worth living, and my life has been wonderful up to now. I love the feeling of the sun on my body, the sound of the wind in the trees outside, and the calls of the birds. I even enjoy the sound of the dog in the back lane. I love walking barefoot on the sand, and to feel the sun, shade, and breeze as I walk outside. I want to do much more of that in the many years ahead. I refuse to give up or give in to anything.

I don't recall discussing thoughts on life with any of my patients when I worked as a neuropsychologist. I only remember seeing three who had rapidly progressive and potentially terminal illnesses. One of them had been diagnosed with Creutzfeldt-Jacob disease and was declining rapidly in body and mind in the months before her daughter was to be married. One of them was a young nurse who had just finished her training, and who had surprised her family by having a son. The other was a man in his 30s who had suffered a deterioration in his marriage after his behaviour started to decline. Both he and the young nurse were diagnosed with early onset frontotemporal dementia on the basis of neurological, neuropsychological and neuroimaging results, and neither had much, or any insight into their conditions. I tried to help their families as much as I could through education and recommendations, but I don't know what difference it made. It was just too hard to do, especially when the neurologists were also struggling to help the families deal with the rapid and unexpected change in their loved ones.

Ok, I'm glad I still have some insight into the things that have happened to me, and that I can sit here in the sun and write about what it's been like to be a patient, and to hope that my blog will help others to think about the effect of brain conditions on individuals and their family. I really wish this wasn't happening to me. I wish I could just lie down, take a nap, and wake up feeling refreshed and ready for a new day ahead.

I don't need anyone to sit with me and give me a neuropsychological assessment at the moment. I know that my memory isn't as good as it once was. I know that my attention and concentration aren't as strong as before. Repeated sounds from the television, or the roadworks outside, can be very irritating to me, and it's very hard to focus on cooking in the kitchen with the sound of the television in the background, or to deal with the food preparation and repeated requests from the kids for food or drinks. I spend a lot of effort staying calm and focussed on the tasks at hand, and it's very sad when people get annoyed with me, because, apparently, I frustrate them when I forget things, or don't think as clearly as I used to.

The experience of having had brain surgery twice this year has taught me something new and unexpected about what it's like to have a right anterior temporal lobectomy. Our focus in the epilepsy surgery program was on "material-specific" memory problems after temporal lobectomies. Past research on epilepsy surgery patients had shown that left temporal lobectomies often resulted in verbal memory problems, and right temporal lobectomies resulted in visual memory problems. I wonder if conceptualising them in this way depended on the tests of memory used by neuropsychologists? Our tests usually measure visual or verbal memory functioning. I vaguely recall reading some articles about autobiographical memory. I don't recall having any tests that measure it. There were some tests that required people to remember faces, but I can't remember what they were.
I know that sitting down with a colleague and going through any versions of the Wechsler Memory Scale (versions I, Revised, III, or IV) would be very frustrating or alien to me at the moment, just like it was to many of the patients I saw, because those carefully designed, constructed, and standardised tests do not reflect what it is like to have memory problems in real life. Sure, neuropsychologial tests like the WMS can tell neuropsychologists how a person is performing compared to others of their age, and if they are performing in the manner expected from their age, education, and occupational background. I guess a neuropsychological assessment can tell a patient that they're performing in the expected range, or if there are particular strengths or weaknesses. But that's only limited information for the person sitting on the other side of the desk who knows that they're not remembering things as well as they used to, because they often have to ask their children or families questions about cups of tea or if they've seen that show or movie before. None of that is tested in neuropsychological assessments.

Darn it. The sun has gone behind a cloud, the road-work machine has started grinding away at the gutter and drains outside, and Ben has gone to get something fixed on the car. I still want to take a nap, and to wake up feeling refreshed and ready to get through the many things that I need to do in the house.

I might write some more later, probably on another post. I feel like I've done okay with this one, and that I may have shared some novel thoughts or insights that could be helpful to other patients, their families, and to neuropsychologists who work with them.

Oh, the other thing that I forgot to mention, is the importance of considering psychological or psychosocial well-being in every patient. I was taught to evaluate mood and anxiety as a routine part of my work, and to consider psychosocial factors in every patient I saw, but it was done as a way to evaluate the effects of anxiety, mood, and other factors on test performance, and in order to develop recommendations that were suitable to the patient. I don't think I was very sophisticated in doing that, even though I developed a degree of proficiency in using the MMPI-2 as part of a comprehensive neuropsychological assessment, followed by individually targeted feedback and recommendations.

Sheesh! That roadwork machine outside makes a truly irritating sound.

Now it's cutting though something, maybe to get at the stormwater drains under our road. Again. I wish it would just go away, or that I had gone out with Ben when he left 15 minutes ago. I just want peace, tranquility, warmth, and quiet. Heavy-duty meditation session about to start.

a lovely Saturday

13 June 2015, 550pm
I've had a good but unusual day today, after a good day yesterday.

Yesterday was marked by the boys going off to school happily, and me seeing one of my oncologists for an appointment at 1045am. He's the one who recommended that I start taking the steroid Dexamethasone again in the mornings. His theory on the increased fatigue is that it is a sign of oedema after the two lots of radio surgery. He agrees with the oncologist in Melbourne that it's a little early to do an MRI scan again, so I'll check the notes I wrote in my diary, I think the Melbourne guy said not to have another scan for 4 weeks or longer, which would be sometime this week or after. Need to check my diary, I know I wrote it down.

After seeing the oncologist, I went to the Tai Chi Traditional Chinese Massage place in St John St in town, where I had a two hour back, neck, shoulders, arms, and foot reflexology session. It was pretty good, though the use of hot stones was a little weird, and I found some of it a little painful. The reflexology was great, but I found I wasn't able to fully relax into it, as I've done in the past.

The combination of seeing the oncologist and having the massage made me feel pretty good by the end of the day, and we had a very simple dinner of meat pies and salad. I think we'll be having tomato soup on toast tonight, though I've given up bread, sugars and most carbohydrates as part of the ketogenic approach to eating. I first heard about it after the royal wedding when Kate Middleton married Prince William, and I found that a version of the Dukan Diet (followed by Kate and her mother before the wedding) helped me to lose 14kg, which I promptly recovered after my poor father passed away in January 2012. I was concerned during my Dukan days that I was eating too much protein and not enough vegetables (the Dukan diet starts with a protein-only phase, and then is supposed to have protein plus vegetable days every other day). My reading on diet and cancer has shown I was right to be concerned. High protein diets and the exclusion of vegetables is not recommended (I didn't eat enough vegetables during that time). I'm much better at having my vegetables now, and have recommenced the daily intake of vegetable juices most mornings. They're essential for a healthy immune system, which is important for general health and for fighting against cancer. As is having a low carbohydrate, healthy fat (LCHF) intake. The internet will give lots of good reading on the LCHF approach to eating. I suspect that my corrupted, high-protein, low veg, approach to the Dukan plan was not very good for my immune system, which contributed to my regular episodes of febrile neutropenia while I was having chemotherapy for the breast cancer, and may have also contributed to the development of the brain tumours.

I've found that getting out and having a walk each day is helping me to feel stronger - my legs were feeling quite weak and deconditioned  after the last week, where I spent far too much time in bed each day. Some of it was a response to the aches and pains of a possible virus, but some of it was spent hiding through sleep from the horrible sound of the wind and rain. I'm planning to make use of our treadmill every morning to get some walking in, and also to use the fitball and hand weights to improve my strength, fitness, and energy levels. I'm also planning to schedule regular social activities, like catching up with some of the people I used to work with, because I find that helps lift my mood and I always feel happier and more engaged with life when I see them. Ben doesn't like me going near the hospital because he's worried about me catching something, but it's a place where I worked for 3 years and used to get along with many of the nursing and allied health staff, so I'm hoping to see some of them at least once a week before we more back to Melbourne. The thought of the move is a little overwhelming at present. The current school term ends on July 4th, and the next one will start in Melbourne on July 13th. So that gives us about 3 weeks to pack up the essential items like clothes and valuables, before we move into Ben's sister's place in Thornbury. The boys will be going to Ivanhoe Grammar school, a coeducational private school where we had listed David before he started kindergarten and when we lived in Melbourne. My friends tell me it has a good reputation. It offers the International Baccalaureate program in years 11 & 12, so I'm hoping we chose well back in 2007.  Frankly, the idea of moving back to Melbourne is more than a little overwhelming, I'm just glad we don't need to sell our house here in Launceston and we can take our time to find a permanent place over there. If any of my friends or family would like to come and keep me company in the next few weeks, that would be appreciated.

It's 625pm and my 13yo is wanting food. He's not keen on the prospect of tinned tomato soup, toast and omlette for dinner, after seeing the new Jurassic part movie with a friend this afternoon. Ben tells me there's chicken thighs to be cooked in the fridge, but I don't feel hungry, or like cooking anything, I'd rather write a little more here and have a nap after a slightly weird day.

I slept well last night, and was woken by the sound of my mother at the back door. I'd forgotten that she was going to meet Aunty Julie, the widow of Dad's cousin Dallas, and that we were going to take a drive with Julie to visit Dallas's brother Des and his wife Barbara at their place down the river. It was a lovely day to drive up the river, and Aunty Julie is a lovely driver, and her newish Ford Falcon was very comfortable to ride in.

Ok, I'm going to make some chicken soup for dinner, just for something different from our regular eggs and toast suppers, and in the hope that it will give us something to eat tomorrow.

Before I go start on the soup, just a bit more about today. It was a bit unusual.

I remember visiting Des and Barbara at their place at Gravelly Beach when she was quite unwell with cancer some time after Ben and I met. I haven't seen them since Dad's funeral in 2012. They both seemed well in the sunshine, and it was heartwarming to see them both again. They used to be regular visitors to Mum and Dad's place during my university summer holidays, and it was always pleasant and relaxing to see them.

Avastin #6

I was set up to have my 6th Avastin treatment today, but they had to postpone it until next week because my platelet count was 80 on the blood tests done last week, and it was 85 on the bloods taken today - a bit higher, but still a bit too low for them to proceed. All my other bloods were okay, or very good, so that's good news, I guess. Ben has discovered that Avastin can cause a range of side effects, including fatigue, muscle aches and pains, sinus congestion, and a lot of the other symptoms I've been experiencing. So let's hope they all go away over the next week as we wait for the next treatment.
I've been feeling extremely exhausted lately, and while it's not fun, it's good if it's related to medication side effects.

I spent most the day in bed yesterday, sleeping, meditating, praying, and hoping that I would wake with renewed energy. It didn't really work. Ben said it made the boys quite concerned - they didn't say anything to me. I was in the bedroom, they were in the kitchen/family room, and I hardly heard them. We had a good time watching some comedies on the tv in the evening, which was a nice end to the day.

It's 929pm and I've only just made it to bed recently, after an afternoon spent working through a number of things I needed to do on my email account after we collected the boys from school. The boys are settling in bed, and I hope we all sleep well tonight. Last night seemed quite unsettled, and I would treasure a solid night's sleep

Thanks for all your emails and support.

a month after May the 4th be with you

Wednesday evening (4/6/15) and I'm sitting up in bed, feeling thankful for my many blessings, and looking forward to many blessings to come.

I'm quite tired after a disturbed night's sleep with a 10 year-old who claims to feel unwell, and who keeps ending up in my bed in the wee hours of the morning, though I don't wake up until his big brother is thumping around with his size 11 feet. Nathaniel has missed a few days of school in the last couple of weeks with a sore throat and tummy, and says he feels unwell. He's on an antibiotic for his tummy after a stool sample was returned as showing a parasitic infection of some sort (not worms, some sort of parasitic cellular organism that I hadn't heard of before. We wonder if it had come from contact with my mother's small and very affectionate (licky) dog, who lives in a small rural town with cows and other livestock around. It breaks my heart to have Nathaniel sobbing in my arms in the morning that he doesn't want to go to school because he's feeling unwell, but I'm worried that missing too much school will be bad for him. His reports have been satisfactory up to now, but he's in year 4, and it's not good for him to be missing out on foundational learning, especially things like maths. I'd hate for him to have to repeat a year. He's going to be 18 when he enters year 12 on the current trajectory, which will make him one of the oldest kids in the year, but that is because he was born early in November, and wasn't ready to enter Grade 1 when he was eligible based on his age. We figured it was better for him to enter year 1 when he was ready for it, rather than struggle with the literacy and numeracy aspects that he hadn't been picking up in Prep (thanks to the school preferring an unstructured Emilio Reggiano approach over structured learning that had worked well for his brother in the school in Melbourne).

Sorry, I know some of you are here to read about my health experiences, but remember, this blog was started up to keep my family and friends informed about my health status. Tonight, I need to write about some of the broader picture things that aren't specific to a person who's had cancer.

I'm feeling guilty about not being able to be the kind of mother I wanted to be (e.g., able to drive and be involved with my childrens' education), and Nathaniel's ongoing issues with separation anxiety trigger feelings of guilt in myself for keeping him in 3-year-old kindergarten when the teachers used to have to hold him while I departed, and he used to cry and scream his little heart out. I could hear him as I walked to the car park. That went on for 2 years, and there were a few episodes at the new school when we moved here to Launceston. I'd hoped that he'd adapt well to being in "prep" rather than "kinder", and while it worked for a while, he still wanted to be with me, even though I was working full-time. He's had lots of issues with wanting to stay home over the last couple of years since I was diagnosed with breast cancer, and then the multifocal and recurrent brain tumours, and has missed a lot of school as a result. I'm worried that he might need to repeat a year of primary school with the amount of school he's been missing, so I'm trying to work out how to improve his school attendance, but it's so hard. I can tell he's worried and anxious, and I can't get angry with him about it. As I said, it breaks my heart, and I feel like crying when he hugs me in tears.

So, enough of that. I'm feeling like a failure as a mother, though I know that's irrational and I'm being too hard on myself, but I don't know what to do.

I had my 5th Avastin treatment at the hospital on Monday morning, and everything went well, so there's just one more to go in a couple of weeks time. It was great to catch up with a few familiar people at the hospital during and after my treatment, and I had another good catch up with a few other people at the hospital the next day. Before I had cancer, Ben sometimes used to say that talking to people was "like oxygen" for me, and I've realised he was correct. Talking to other people makes me feel energised and alive, and it's very important that I have regular face-to-face contact with others. These last few weeks at home, when the weather has been bad, and I've been feeling low in energy, have been bad for my spirits. There have been days when I've stayed in bed for hours, trying to use sleep to help me hide from my sad feelings, or the sound of the wind and rain outside. I'm determined to set up some regular activities that involve social contact with others, even if it's just familiar people at the pharmacy or other shops and cafes in town, because it helps me feel much more positive about things in general. Being stuck in the house without any social contact is not good for my mood. I've also had the realisation that I tend to interpret other people (i.e. family) getting irritated or frustrated with me as a sign that they dislike/hate/despise me.  Again, not rational. But my feelings are rather fragile at the moment, and I just want people in my family to love and cherish me, and to show it through their words and deeds.

David's been getting irritated with me for asking the same question a couple of times - apparently I've been doing it "a lot", but I don't remember. I tell him that my memory isn't as good as it was before, and that if I repeat a question, it's either because I didn't hear him answer it in the first place, or because I've forgotten the answer. I'm hoping that this strategy of educating him that my memory isn't impeccable will work soon, because I'm starting to find it hard to deal with his adolescent grunts of irritation about having already told me the answer to a question (as many as "100 times"), and it's beginning to upset me. I'm not deliberately trying to annoy or frustrate him, or to forget things on purpose. I'm just finding it harder to cope with mulitasking and background noise, and sometimes I simply cannot remember things that I've been told before.

I had no inkling of what it was like to have a memory problem when I was a neuropsychologist, but it's really hard to deal with. I'm doing the best I can to use a variety of memory aids, like a paper diary and notes, but it's surprisingly difficult just to function within a family now that I'm forgetting things that need to be done, and when we don't yet have a family memory centre set up.

I had a lovely visit from a cousin today, who popped in to see me on her way up from Hobart. She's full of energy and very dynamic, and offered to help me sort out some of the boxes in our walk-in robe. I found the activity exhausting, and would have taken a nap, but for her strict instructions not to, because she was concerned it would effect my sleep tonight. I didn't know how to tell her that I get tired very easily these days, and the reason I haven't dealt with all of the clutter in this place is because I need the energy and motivation to do it, and I prefer to do it in the company of others. I feel overwhelmed by the amount of things I need to do, and I'm prioritising them, so that the important things get put first. A few months ago, I decided to make the kids put their own clothes away so that they'd know where to find them in the morning, but that hasn't worked, well, not yet, anyway.

Darn it, my cheekbones are aching under my eyes from a lingering sinus infection, or the cold air in our bedroom, and I'm finding it hard to stay awake. Everyone else in the house is slumbering soundly, and I will join them soon. There's plenty more I'd like to do, but I need to sleep tonight, and there is much time for me to do many things in the future. I can remind myself now that just because someone is irritated or frustrated with me, it doesn't mean they hate me. I don't know where that neurosis came from. I know there are many people out there who are very fond of me. Though I probably don't irritate them as much as the ones I'm in daily contact with.

Damn it. This is part of the psychological aspect of having had a couple of forms of cancer. It probably puts most people, and their families, under stress.  I'm doing remarkably well, despite everything I've been through, and I'm hoping to get through many more decades of good health and company.

Goodnight.

After the first night with steroids

839 am and it's sunny and cold outside. I've got a rotten headache, and am going to try to  snatch some sleep after writing this update. Ben's early flight to Melbourne for a peer review meeting was cancelled for "technical reasons" and I'm glad. I wasn't happy about the prospect of him being away until tomorrow afternoon, as I've been feeling poorly lately. So even while he needs to have his regular peer review meetings for registration purposes, I'm glad that the airline made it impossible to attend this one. He's taken the boys to school this morning, and I'm going to snatch a little more sleep,   after a night disturbed by sinus congestion, a cold head (despite my beanie) and pain across the top of my head. I've taken a couple of paracetamol and hope they cut through the pain. I'm scheduled to see my oncologist at 1045, so that gives me 1.5 hours to meditate off to sleep and hopefully wake pain free and rested. It was hard to sleep last night with the cold and sore head, though one good thing is that I did get to do lots of leg exercises while lying down. My upper leg muscles have been feeling a little deconditioned latetly, but I worked on them last night while I couldn't sleep in the early hours, and they're feeling achy and stronger today. Darn it, I just want to fall asleep for a little while and wake up feeling refreshed and free of pain. I think the 4mg of steroids (dexamethasone) might have affected my sleep last night), and it might do so again today. Gotta be grateful, I guess. Sleep now, while the sleep window is still open.

Back on the steroids again

Thursday 11th June 456 pm
 just a quick post to say how I'm feeling. I have a few drafts waiting to publish from the last couple of weeks, but I can't work out how to get to them just now.
I'm propped up in bed to write this. Ben's gone to get David from his hockey practice at 5pm, Nathaniel is sitting in the family room watching tv. Ben said he'll buy some takeaway food for dinner.  I've been doing reasonably well preparing our evening meals the last couple of weeks, but I'm utterly exhausted today, despite spending most of the day in bed asleep, and despite sleeping reasonably well last night.
I thought I'd been affected by the virus that's been going around, causing reduced appetite and diarrhoea, but I haven't been feeling achy, just drained of energy, and I'm finding it hard to concentrate on things that used to be straightforward. For example, we got a letter from the bank saying that an online payment to the chemist had not been processed because I'd given the wrong account number. I could see on internet banking that the payment hadn't gone through. Then a letter came from the chemist saying that we owed them over $11,000, so I looked at our internet banking, and it seemed that some of the payments I thought I'd made hadn't gone through. Ben went to the bank and got a printout of our statement, and it seems that a number of payments to the chemist hadn't been successful. A letter from the chemist also came, saying we owed them over $11,000, so I've written a cheque which we've delivered today, and I've transferred the money to our cheque account.
The Avastin cost $3477 each fortnight, and I've had 5 out of 6 treatments so far, so I'm glad my income protection insurance is still coming through each month, and that we were well-insured in other ways. We were told that 6 cycles of Avastin usually costs about $20,000. It's not covered by the pharmaceutical benefits scheme here in Australia, but my private health insurance may give us something. It would be very hard to deal with the cost of treatment if I hadn't received a payout for trauma insurance when I was first diagnosed with cancer, and it would be even harder if I didn't have the income protection insurance. Ben has recently stopped working at the local hospital in preparation for our move to Melbourne, which is being done primarily to benefit my health, as there is a greater number and range of treatments available in Melbourne, and if I need to have brain surgery again (god forbid), or other treatments, it means that the boys will be able to keep attending school rather than being dragged around with us. Ben will be able to start part-time private practice in Melbourne almost as soon as we get there, where we plan to live in his sister's vacant but furnished house, at least for the short term. I don't really want to move back to melbourne, I like living here, but we need to do the best for my health and ongoing wellbeing, and I have lots of old and dear friends in melbourne who have kept in touch since we've been here.
Oh dear, I don't want to put too much personal information up here. So a little less about the move, and more about how I'm feeling.

I spoke to one of my oncologists on the phone today and told him I've been feeling increasingly low in energy, and am finding it hard to focus my mental energy on things. I've been sleeping a lot in the day, each day for the last couple of weeks, and I'm worried that there may be new trouble ahead. My right hand was twitching a little last night, but there aren't any new neurological signs that I'm aware of. He suggested I take 4mg of dexamethasone this evening, and another 4 in the morning, each morning for the next few days, as the fatigue may be related to the stereotaxic radiosurgery I had recently. I hope he's right. I don't like feeling like this, and I keep telling Ben I'm not doing it on purpose. He has to fly interstate in the morning for a peer review session tomorrow, and won't be back until Saturday. I'm trying to call my mother to see if she can help me until he returns. I'd rather not be alone when I feel at such a low ebb. Even now, having Nathaniel in the family room while I sit up in bed typing this, I'd rather have Ben around for company, because I really feel completely overwhelmed and drained of energy. This isn't me. I used to like to sleep in as a treat in my hedonistic  days before I had children. It's not something I've done wilfully since then. I'd far prefer to get out and do things in the garden, walk around the neighborhood, or catch up with friends and acquaintances. It's just been so hard to summon the energy to do that lately.

I had a period of feeling energised and refreshed for a few days after the first session of stereotaxic radio surgery, followed by an unscheduled session of Reiki from a friend in Melbourne, but that feeling seems like a dream, or a distant memory. The urge to rest keeps building up in me. Ben will be home with David soon, and I'm hoping that a quick nap will help me summon some energy to do things around the home tonight.

This is all a little bit scary, but I'm not allowing myself to succumb to fear or my imagination. I'll post this, turn of the laptop, lie down and rest, until Ben and David get home.

Love and thanks to all of you for your ongoing support

wednesday 17th May, 218pm

I've just arrived home after spending the morning out. It's been a strange morning - I didn't sleep well last night thanks to the nasal sprays that were meant to deal with the sinusitis that had been bothering me the past few nights, but they only worsened the postnasal drip for most of the night and I wish I'd only taken Sudafed or another decongestant instead. I went through nearly a dozen tissues overnight, and Ben told me to stop blowing my nose so much in case it started bleeding. Not a good thing when Avastin has antiangiogenic properties.

Anyway, today has been weird, not just because it is cold and grey as winter approaches, but because my mobile phone lost power after Ben dropped Nathaniel and me at the little guy's school. It was strange to be walking around without a mobile phone - I didn't realise how much we've got used to having them with us. It was good to remember that I got my first mobile in 2000, just before I sang Mahler's 8th symphony with the Melbourne Chorale at the opening of the Sydney Olympic Arts Festival, and how before that, I had travelled up the east coast of Malaysia by myself over a 3 week period, and had lived for 6 months in Boston while doing my postdoctoral research fellowship (Hi Barbara! I still treasure memories of working with you in Marlene's lab at the Boston VA on Jamaica Plain, and of the kindness you and Jonathan showed me in letting me live in your spare room until I found that rental in Marion St down near Coolidge Corner). No mobile phones for me in those days - I would call friends and family from public phones or where ever I was staying, and I managed to see quite a bit of the world. Not having it working today was quite disconcerting. Largely, I think, because I worried that Ben might be worried about where I was.

After Ben dropped me off with Nathaniel at school, I walked to a local cafe where I had muesli and a weak flat white for breakfast, and I hoped I'd see one of the other school mums there, like I often do, thinking they might be able to give me a lift home. That wasn't to be, so I walked up the (steep) hill and down to the CBD, where I treated myself to a traditional chinese massage at a place called Tai Chi in St John St (2 hours covered neck, back, shoulders, arms, and reflexology massage of the feet). I figure it couldn't do me any harm, and may even be beneficial to my health. I walked up to the hospital where Ben was doing job interviews all day, and managed to snatch a light lunch with him and a couple of his colleagues, and to see a few of my own colleagues, though not for long enough.  

It was good to get a decent walk in, even though it was cold out today, and I'm glad I had the massage. I still feel like I need a good sleep, so I'll try to fit one in in the hour or so before the kids are due back from school. 

The house is a bit of a mess. The boys aren't yet on top of putting their own clothes away (I don't believe they've really tried to do it for themselves yet), and I'm sick of the piles of clothes on their bedroom floor and the dressing table in their room. I'll have another go at it once they get home, possibly, though I need to work out what I'm making for dinner, and I'd like to help them with their homework, as they seem to enjoy it when I do that. 

Sorry about the boring post. I'm still feeling tired from last night, but I'll wind up now and snatch that nap I mentioned. It could be scrambled eggs for dinner again tonight.

Waiting to fly home 630pm Saturday

6pm Sitting in the waiting lounge for our flight home to launceston in an hour. I napped most of the afternoon, and felt a bit confused about  recent events most of today. We flew over on wednesday evening, and i had my treatment mask checked on Thursday, and I had a blast of stereotactic radiotherapy to  my left anterior temporal pole yesterday. Ben thinks that's why I'm feeling confused. 

I'm worried that the area they zapped, identified on MRI nearly 2 weeks ago, which is thought to be an extension of something that had looked like a menongioma in the left temporal lobe prior to my last surgery in March, I'm worried that area is a tumour that has grown and may need surgery, even though it was zapped with gamma radiation in this last round of treatment. I was happy that this radiosurgery was available, because removing the front part of my left temporal lobe could result in language and memory changes. But leaving a tumour untreated could result in other things.

I'll be asking for another MRI when i can at home next week. I'm feeling quite shaky emotionally, feeling that something isn't right, but determined to stay calm and not give in to fear. 

I've had such a wonderful life, blessed with many beautiful, inspiring, and loving experiences. I'm sure it's going to continue and that I'll be able to continue to give much to my family, friends, and community. 

Time for one of those clonazepam hiding in my handbag. They're intended for seizure prevention, (I'm not sensing an aura right now), but they can also help with anxiety management. 

Tonight, I'm feeling very afraid, possibly more afraid than I've ever felt, and I don't know why. I just want to get away from the noisy tv in the airport waiting lounge, and to be surrounded by peace at home. And have another mri this week. I have a feeling that something's not right. 

I must get off my iphone where I'm composing this thing. We'll be boarding soon, and I need to take that clonazepam. Love, thanks, and blessings to all of you.

On being a mother with recurrent, multifocal, GBM

Knowing what I have and what may happen to me is gut-wrenching at times, especially when I see my two beautiful boys, and watch them grow from childhood into adolescence. I want to be around for them  for many years to come, to travel with them and see the world, to be there for them as they grow into adulthood. I'm coping with things through meditation and other practices intended to promote calmness and serenity, and although I sometimes feel a cold hand of fear clutching my intestines, I let it go and absorb all the wonderful warmth from the people I know and have known.

I must sleep now, it's another chilly night in Launceston as winter approaches, but I love it here, it is so beautiful.

Prelude to mother's day 2015, with a small update and a bit more about a spiritual journey.

Saturday evening (published late at night without major editing)

I haven't heard back anything about my latest MRI scans, which were taken on Tuesday. We viewed them with one of my oncologists after they were done, and he asked for them to be put on CD and sent by express post to my neurosurgeon and radiation oncologist in Melbourne. The rad onc. in Melbourne said he should be able to inform me about the treatment plan by the end of this last week, or early next week.

No news yet. This is the longest I've had to wait between having and seeing a scan and being advised on the recommended treatment. It's not bothering me particularly, I feel a strange sense of being distant from all this. It's incomprehensible if I try to make sense of it, though I've learnt long ago that trying to make sense of things like this is futile. They happen, and the past can't be changed. The best I can do is to make the most of the present moment and hope that every present moment is filled with love, joy, and the divine golden light of creation that unites us all across time and space, creating a golden, loving and peaceful future for every one of us, for all who will come after us, and for all those who have left us already.

Sorry if you're just looking for neuropsychology or brain tumour stuff here. The last paragraph isn't neuropsychology. It's about the experiences and insights I have gained about spiritual things since the first two brain tumours were found in 2013. I still wouldn't dare to talk about spirituality at a neuropsychology meeting. One of my oncologists often used to ask me if I've experienced any spiritual development since getting early breast cancer. It seems that many of his patients have such experiences after being diagnosed with potentially life-threatening diagnoses. Spirituality and coping with life-threatening conditions are not standard areas of study in the Australian curriculum for accredited neuropsychological training programs. I don't recall ever seeing any units offered in these areas in either of the two the courses I taught in, and have not seen them offered at any of our two decades worth of national conferences, or as local professional development activities.  I feel sad at the neglect of this area in a field that focusses on people who have suffered acquired brain injury, including traumatic brain injuries suffered in motor vehicle accidents or other unexpected high-impact insults on the body and cranium; life-threatening infections including encephalitis and meningitis; other forms of acquired brain injury, including alcohol-related brain injury, loss of oxygen to the brain from injury or intoxication, stroke.... The list of causes of neuropsychological disorders has filled many textbooks. It's not my job to do that here.

If my voice is worth anything, I hope that this post will encourage my profession, here and around the world, to recognise that every human being affected by a brain condition may benefit from seeing a professional who recognises the psychological impact of the acquired condition on the individual, both as a person with a sense of identity, but also as a member of one or more communities who share  interests such as sport, gardening, crafts, food, wine, travel, movies, novels, or religion or spirituality. Excluding religion, faith, and spirituality from our consideration of the facets that contribute to a person's wellbeing  is to fail to consider the person as a whole. In practicing neuropsychology, I don't think I ever fully considered the effects of neuropsychological disorders on the sense of self or identity of the patient. I saw my role as helping to identify what had happened to their brain and how it worked as a result of the stroke, tumour, injury, or developing neuropsychological condition, and to provide feedback to educate both the patient and their family or caregivers on a range of strategies to deal with the changes in behaviour, cognition, mood, or personality, in the hope that education and individually formulated recommendations would help improve quality of life for patients and their carers or loved ones.. Talking about religion or spirituality wasn't something we were taught to do in neuropsychological practice. But our patients are human beings, some of whom will follow a religion, even if their neuropsychologist is an atheist, and many of them may have a wide range of spiritual beliefs, practices, or experiences. Failing to inquire about the importance of religion, faith, or spirituality to them is failing to recognised them as a complex and multifaceted human being.

I hope this hasn't turned you right off. I feel sad that raising issues of spirituality makes me feel that I risk losing my professional reputation as a neuropsychologist, where I never recall hearing spirituality discussed in my 25 years of involvement in the profession. The fact is, neuropsychologists often deal with people who have faced , or are facing, life-threatening conditions, and ignoring the possibility that religion or spirituality is important to patients or their families means that we are not helping them in the most wholistic or comprehensive way possible.

Back to me - symptom-wise - I've been quite sleepy in the day over this past week, sleeping very soundly at night, not wanting to get up in the mornings, and working on getting through the mountain of things on my to-do list little-by-little. I need to sort through the mounds of papers on the dining table, to pack all the Lego away in the boxes that have been empty for years, and to sort through the many books, papers, and other things acquired and collected over the years. These things aren't a priority, just a niggling list of unimportant things to do. A little bit at a time will eventually become a lot. (When I backpacked up the east coast of Malaysia on my own in 1992, I kept hearing a saying that was translated as "Little by little makes a lot". In the local language, Bahasa Malaysia, it sounded like this: 'sid-ik-it, sid-ik-it, lama' (apologies for my utter ignorance of how to write it). I loved that trip, the people were so friendly and helpful, and I was blessed to meet a couple of kind American gentlemen (one, a marine on holiday, who sought my company after seeing 'Australia' after my name on a ferry passenger list, another, a backpacker on holiday with one of his uni friends),  a young Scotsman, two English girls, and a Swiss medical student. They all provided company and companionship for parts of my holiday, along with the kind bus drivers who treated me well when I said I was travelling to the next town to meet my husband, who had gone there ahead of me. I'd learnt from previous travels in Indonesia that a married woman is treated with more respect on public transport than a single woman, so I invented a husband for my solo travelling in Malaysia. It's a shame that every woman isn't treated with the same respect, regardless of their marital status. We're all someone's daughter. We're all worthy of the same respect.

Today we had a wonderfully uplifting walk over the boardwalk to Tamar Island, a nature reserve on the Tamar River. My fitbit says we walked over 6km, and it was incredible. I've never been there before, even though it's been accessible for several years. The long river grasses, the trees, the sky, the wildlife (birds, pademelon, tadpoles) and the swan using its wings and tail feathers like sails on a yacht to glide up the river.... it all felt so wonderful, I could go there every day. I'm surprised it's not promoted as a major destination for people seeking an adventure in nature here in Tasmania. I wouldn't like to see it taken over by buildings, it would ruin the sense of an unspoilt natural, though historic, environmental feature. I remember a similar magical sense from the first time our family went to the Freycinet Peninsula on the east coast, the Tasman Peninsula (outside of the haunted and tragic historic site of Port Arthur), or the Pieman River on the west coast, or even Macquarie Harbour on the west. Today's walk was so exhilarating, we've all expressed an interest in doing it again (regularly, I hope). This is one of the best days I've had lately.

We're going to mum's for a mother's day lunch tomorrow, I insisted that we'll bring food so that she doesn't need to cook. My mother is an incredibly resilient and independent person, an accomplished baker, and highly skilled at many forms of needlework. She is a patient teacher of her handicrafts and cooking skills, and has been invited to judge needlework at local shows. She has always been busy with local community groups and music, and is currently involved in at least two choirs. When I was little, and in primary school, I used to wait up at night until I heard her drive home from various meetings or events, because I was afraid she'd have an accident and never return. 30 years later, she's still driving and going strong. I only wish my father had lasted this long as well, so that my boys could have got to know him.

Thanks to those of you who have sent me emails lately. I appreciate each one of them, and I'm sorry I haven't responded to all of them. Today is the first day when I haven't slept for a few hours in the day, and it's the first time I've had the energy to write here, although I've thought of many things I want to write.

Wishing everyone a happy mother's day for tomorrow, and every year, whatever role or roles you take in it.

I'll update you with any information that becomes available. Rest assured, I'm feeling well (on top of the world after our walk today), and pretty darned good for someone who has had 4 brain tumours removed, and recent evidence of another one growing in my left temporal lobe. I guess I would have heard something about it by now if it needed to be treated urgently. I don't recall seeing much oedema when we viewed the scans on Tuesday.  I hope it's just a slow-growing something. It's not causing any neurological or cognitive symptoms to my knowledge, and I think my level of insight is okay. My language and word-finding abilities aren't causing me any concerns at present.

God bless all those with any form of brain condition, our brains are the vehicles for our souls as they partake in this earthly journey. Sometimes the vehicles break down, get damaged, or sit idly by in a state of disuse or poor repair for weeks, months, or years. Our souls are eternal, and our brains allow our souls to learn and flourish through the many experiences we can have in this life. Our souls continue on after the spark of life is gone, and we are all united by the love, compassion, forgiveness, and understanding of the infinite source of all creation. This is knowledge about the brain that has come to me now, as I write this, and earlier (the divine golden light), after my first two brain operations.

All will be well.  Love and light to everyone, to every living being and organism on this beautiful world. Goodnight.