"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."
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.
