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.
