I'm writing at 1020pm on Wednesday February 18th after travelling to Melbourne to see visit to a new neurosurgeon for a second opinion tomorrow. I've been awake since 3am, so I'm feeling extremely tired, but I feel compelled to write, and able to do so because I'm sleeping in a room on my own at a friend's house.
I have no idea what tomorrow will bring. I haven't heard anything about the results of yesterday's MRI, and I don't want to see the images until I'm sitting with the neurosurgeon who can interpret them for me and give me advice on what to do next.
I had a miserable day yesterday, when my attempts to share some of the things I've learnt about life with a close family member were interpreted as complaining about another family member. It may have been the stress of anticipating the scan, or everything that we've been through, but I became quite distraught, as I felt I was being criticised for what I'd been saying, when I'd been trying to help share knowledge and insights that I wish I'd known when I was younger.
A day of misery helped me develop some insights into myself: I realised that I sometimes perceive raised voices, frustration, criticism, or irritation directed at me as a sign that the person doesn't care about me (not a rational response, but an automatic one, and something I'll have to work on rewiring).
Also, there have been a number of times in my life when I have felt particularly unhappy, and each one was associated with a sense of social isolation and reduced sense of purpose.
1. The first of these was when I travelled from Tasmania to Melbourne to begin my undergraduate studies in 1986. I only knew one person at the residential college where I stayed, and I felt unsure of my identity being so far from family and familiar people. It was liberating to be away from people who'd known me before, but it was a strange, male-dominated environment where several senior guys enjoyed inventing multiple versions of my surname as a nickname (cries of BargainHunter! BagelHeater! BeagleBunter! would greet me as I crossed the quadrangle or entered the dining hall some mornings). I felt like Melbourne was a big black hole, and that I was being sucked to the bottom of it. Thankfully, a kind medical student listened to me when I wandered the corridors in distress one night, and I was able to attack my studies with a sense of purpose.
2. The second unhappy time was in 1992, the year I began full-time PhD studies, and the year after I completed my coursework and placements in clinical neuropsychology. The cohort of students who I'd known over the previous 2 to 6 years had moved on to work or study elsewhere, and I felt lost without them, and I wondered if I was doing the right thing by doing a PhD. I hoped it would give me more practical experience (through testing clinical subjects and healthy controls for my research), and thus make me a better clinician. I chose a pragmatic but dry experimental topic that allowed me easy access to people undergoing rehabilitation for alcohol dependence, but I wasn't passionate about it at all. I cured my malaise by flying to Singapore to visit an old school friend and her husband, and then backpacked up the east coast of Malaysia by myself for 3 weeks. It was a fantastic holiday, and I returned to Melbourne feeling recharged and invigorated.
3. 1995 - moved out of Barkly St to Waterdale Road, living alone, missing Deb
4. 1998 - moved into Eltham - less able to see friends than before
5. 2002 - after David was born. No friends in Eltham, no luck with mother's group, had to drive to SVH or elsewhere to see friends
6. 2005 - after Percy's stroke. Trying to work, mother, and help Hannah
7. 2013 - socially isolated, particularly when unable to drive after brain surgery.
Note: particular difficulties of not driving for mothers (social isolation, limits after school activities, grocery shopping). Stress of memory/attentional issues on relationship. Lack of patience/tolerance or frustration from spouse.
A blog started in 2013 to inform family and friends about my treatment and progress for early breast cancer. Then I went and got two brain tumours,,both GBMs, completely unrelated to the breast cancer, so the blog continues.
Background and overview
I learnt more about the health system from being an inpatient than I had in 20 years of working as a neuropsychologist. I was unexpectedly diagnosed with two brain tumours on 4/9/13. They turned out to be grade IV Gliomas (glioblastoma multiforme (GBM)). After removal of the right parietal and left occipital tumours, I received the standard treatment under the Stupp protocol (combined Temozolamide (TMZ) and conformal radiotherapy 5 days/week for 6 weeks), but the TMZ had to be ceased after 5 weeks because I had started to develop pancytopenia, where more than one of my blood counts had begun to drop. By Christmas 2013, I had become anaemic and needed a couple of blood transfusions. I ended up in hospital for 3 weeks of the 2014 new year after experiencing my first seizure (suggestive of a right temporal lobe focus) on 31/12/13). They were so worried about my bone marrow, they did a biopsy. Luckily, it was all clear of any nasty disorders. It had just been suppressed by the TMZ My blood counts slowly returned to normal with daily injections of GCSF, which stimulate bone marrow function, for several months. For 17 months I was doing better each day, without any physical impairments or major cognitive problems A third brain tumour was found in the right temporal lobe on 2/1/15, and removed 6/1/15, only to reappear on 17/2/15 after I started to feel vague symptoms at the end of 2014. I had my 4th round of brain surgery on 1/3/15, followed by stereotaxic radio surgery of a residual, inoperable, tumour, on 17/4/15. I've been feeling like my old self again since that highly precise form of radiotherapy, and it feels fabulous.
My way of coping.
I choose to live in hope that everything will work out for the best. I've learnt that even though things are sometimes unpleasant, life and love go on forever. I put my faith in the life force that created and unites us all in love, across all time, space, and dimensions. I refuse to succumb to fear, which is an invention of our imaginations. There are an infinite number of things to fear, both in this world an in our imaginations, and most of them never eventuate. I choose not to dwell on them, and to focus instead on counting my many blessings, current and past, and to have faith and hope that if I look after the present moment, the future will look after itself.
If you're reading, and haven't been in touch, please don't be shy, send me a brief private message using the contact form on the right. It's nice to know who's out there. Blogging can leave me feeling a little isolated at times (I used to have recurrent dreams of being out on a limb over a canyon, or of starting to strip off in a crowded waiting room). Your emails are appreciated, although I can't necessarily answer all of them.
