Background and overview

I learnt more about the health system from being an inpatient than I had in 20 years of working as a neuropsychologist. I was unexpectedly diagnosed with two brain tumours on 4/9/13. They turned out to be grade IV Gliomas (glioblastoma multiforme (GBM)). After removal of the right parietal and left occipital tumours, I received the standard treatment under the Stupp protocol (combined Temozolamide (TMZ) and conformal radiotherapy 5 days/week for 6 weeks), but the TMZ had to be ceased after 5 weeks because I had started to develop pancytopenia, where more than one of my blood counts had begun to drop. By Christmas 2013, I had become anaemic and needed a couple of blood transfusions. I ended up in hospital for 3 weeks of the 2014 new year after experiencing my first seizure (suggestive of a right temporal lobe focus) on 31/12/13). They were so worried about my bone marrow, they did a biopsy. Luckily, it was all clear of any nasty disorders. It had just been suppressed by the TMZ My blood counts slowly returned to normal with daily injections of GCSF, which stimulate bone marrow function, for several months. For 17 months I was doing better each day, without any physical impairments or major cognitive problems A third brain tumour was found in the right temporal lobe on 2/1/15, and removed 6/1/15, only to reappear on 17/2/15 after I started to feel vague symptoms at the end of 2014. I had my 4th round of brain surgery on 1/3/15, followed by stereotaxic radio surgery of a residual, inoperable, tumour, on 17/4/15. I've been feeling like my old self again since that highly precise form of radiotherapy, and it feels fabulous.

My way of coping.
I choose to live in hope that everything will work out for the best. I've learnt that even though things are sometimes unpleasant, life and love go on forever. I put my faith in the life force that created and unites us all in love, across all time, space, and dimensions. I refuse to succumb to fear, which is an invention of our imaginations. There are an infinite number of things to fear, both in this world an in our imaginations, and most of them never eventuate. I choose not to dwell on them, and to focus instead on counting my many blessings, current and past, and to have faith and hope that if I look after the present moment, the future will look after itself.

If you're reading, and haven't been in touch, please don't be shy, send me a brief private message using the contact form on the right. It's nice to know who's out there. Blogging can leave me feeling a little isolated at times (I used to have recurrent dreams of being out on a limb over a canyon, or of starting to strip off in a crowded waiting room). Your emails are appreciated, although I can't necessarily answer all of them.


Monday, 21 October 2013

Body image and self-esteem

(Written around the end if September)
I have felt fat and unattractive all my life, and have only just realised why, at the ripe old age of 46. Part of it stems from having a petite and acid-tongued grandmother who used to tell me "keep eating like that and you'll end up fat like your mother", part comes from being taller and larger than most other girls and women, and part comes from being told I took after my mother, who has been overweight (but happy) all my life, and part comes from my experiences living in a girls' boarding school.

I was teased in boarding school for my hips, I had a little bit of padding on them, but my stomach was always flat, even up until my pregnancies.  I still remember one older girl at school saying, "you know, Bardenhagen, we've been talking about your legs, and they're okay up the the knees, but your thighs are terrible." Legs were the body parts to display in the early 1980s - short skirts were subtly hitched higher when we sat in the sun with the rare boys who we came in contact with, but my thighs were declared verboten, and I've spent my life hiding everything above my knees out of a sense of civic duty not to pollute the environment with the sight of thunder thighs.

There was terrible bullying in that boarding school. I was a sensitive kid who took criticism keenly, making a fun target for the bullies, and my trusting nature meant I was easy to take along for a ride and made to look a fool. The worst event was when three girls held me down in the boarder's common room one winter day and threatened to dack me. I think it started out innocently enough, with my cousin tickling me on the floor, but then two older girls saw the chance for some malicious fun, and  took off my shoes  and were tugging at my stockings, which they removed (laughing all the more because I may have been yelling that I was going to get them) and I was sure they were going to take off my undies as well, so I started to say that I had my period, which grossed them out and they stopped. The worst thing was that the common room was full of all the other boarders, who circled around and watched, and no-one spoke up in my defence. They seemed to look on in fascination.The younger ones were wide-eyed, and none of the older ones said anything - the two bullies were untouchable. Nothing was said to the housemistresses, and everyone acted as if nothing had happened.  I'd learnt from previous experience that if I complained  to the housemistresses about being treated badly, I would be told not to provoke bullying behaviour from others. It was my fault, in other words. I even had to write "I am a victim of circumstances" 100 times as a detention because the other girls in my room had played up, and the housemistress felt that I should do detention as well. Which meant getting up and out of bed, into full school uniform, and standing outside the Headmistresse's Office for half an hour or so, then doing lines the next day.

The near-dacking event affected my sense of safety and trust in the others, and has probably made me wary of certain forms of attention all my life. The other thing that has bothered me and affected my ability to love myself has been my life-long fear that I would become morbily obeses.

I had been a reasonably healthy weight for my height until 2007. I was in the 72-78kg range, the lightest I've ever been since fully grown was 67kg, after my post-honours trip to Bali and Lombok in 1989, after a year of walking everywhere (no car), and not eating well while finishing my thesis (often having only a milkshake for lunch because of long hours struggling with Fortran and SPSS in the computer lab at uni. Those were the days!). I started to gain weight in 2007 despite joining the gym and trying a couple of diets  (Herbalife (which had helped me shed 8kg before our wedding), Lite'n'Easy (where calorie-controlled meals are delivered). It turned out that I had Hashimoto's hypothyroidism, which slows your metabolism, and causes weight gain, even when treated with thyroxine. The GP had reassured me that the weight gain would stop when I was diagnosed at the end of 2008, but I still managed to gain another 10kg, while going to the gym 3-4 times a week and watching what I was eating, so by the end of 2009 I was up to 96kg, which was what I reached during both my pregancies. 96kg and pregnant is much more enjoyable than 96kg and having to wear size 16 clothes and feeling like nothing you do will make a difference. I'm glad I have never reached 100kg, that would have been very depressing.

I was a slightly chubby kid in primary school and I loved my food.  I remember being embarrassed at weighing 48 kg with a bit of a belly at age 10 (grade 4), though the boys' health record books tell me that's the 97th %ile for girls that age. I was also the tallest in the class, so I probably wasn't that overweight at all, I was just of good solid German stock from both sides of the family (mum's grandmother's name was Scheetz, pronounced Schates). I'm 175cm tall (5'9"), and have loved being able to reach things in high places, both in reality and symbolically, I guess. According to the child health record, that puts me at the 97th percentile for height for girls aged 18. And being in the 70-80kg weight range is in the 90th-97th percentile for girls aged 18, and I stayed in that range from the age of 16 to 40. So I've been beating myself up for years for being a size 14 who weighs over 70 kg, when it's utterly appropriate for my height! I can't believe I haven't looked that up before now! It's much more sensible than the whole BMI bulldust.

I think I was sensitised to feeling overweight as a kid because I could hear other kids mocking my mother for being overweight. It broke my heart because she's the most kind and generous spirit (albeit bossy and rigid at times), and it was awful to see girls giggling at her jiggling thighs as she went for a swim at the beach or the pool. I didn't like to see other girls laughing behind my mother's back.

5 October, 2013
OMG, we females are cruel to each other! Or at least, we were in the 1970s and 80s. It bothers me to learn that girls in year 3 at my kids' school are restricting their eating, aspiring to look like the handful of mothers who come to school in their black gym pants each morning.  Maybe there are other little Fionas there who would like their mothers to look slim and beautiful as they think they should, because they idolise them so much, and the media tells us that all women should be slim and beautiful. Maybe there are other little girls who worry that they'll grow up to be fat and unattractive and somehow unlovable because their mothers would never wear gym clothes in public. Maybe, like me, they think they will grow up to have bodies like their mothers, because they've heard so often that they take after their mothers, and they want to be in all the good, nurturing ways, and the beautiful ways, but not in the body ways. Because they see how some mums are unhappy with their bodies, or that their mums would be a total embarrassment if they even tried on tight black pants. They want to have yummy mummies too, because the way we look is the most important thing in this superficial, vain society.

When I went over 90kg in 2009, I discovered a great range of clothes at Chelsea Design in that felt great, flattered my figure, and seemed a worthwhile splurge of some of my reduncancy package from Victoria University (I'm still so cross with that damned place for closing down our DPsych in Clinical Neuropsychology. Alan Tucker did a damned fine job of setting it up, and it was an honour and a joy to work there with him and Peter Dowling, Ada Kritikos, and Alexia Pavlis from 2003-2009.) I wore those Chelsea clothes as my work wardrobe for 3 years, and have handed them on to my cousin, who is getting continued compliments and joy from them. After my fish feast the other day, I bought myself four new tops and a cardigan, to wear with my beloved maxi skirts and a couple of linen pants to wear this summer, so I have my spring-summer wardrobe sorted. Very happy feeling!

21 October
Now that the thought of breast reconstruction is far off the radar, I've pulled out the berlei bra with the cushion-stuffing prosthesis, and am having a shot at looking like someone with two boobs. It's not too bad. My spring and summer clothes fit okay, and my forearm crutch is enough of a marker of strangeness for me. I don't really care about my thighs, only wish they'd feel stronger. More walking is in order. Funny how things change.