I had a liberating morning doing some shopping in Launceston. It was -2C this morning, but the sunshine warmed things up, and I managed to find some smart clothes for the boys at quite reasonable prices, including two Pumpkin Patch jackets for Nathaniel at $15 each. Carrying the shopping around made me realise I need to do some upper body weights - my arms were heavy and achy in the afternoon, and I slept deeply from 130-5. I'm still tired, so this won't be a long post.
Ben gave me a ride home from town, and I had one of those lightbulb moments where I realised something I should have known before. If a person is diagnosed with a very serious illness, like I was, then it's very confronting for other people to be told about it. They'd probably prefer not to know, depending on their own experience of serious illness, and their own coping mechanisms. I've never had a problem with knowing about others' illnesses, though being told by my cousin Marita that she was dying, just after Dad died in February 2012, was difficult to handle. I knew she wasn't well, but she seemed very much alive to me, right up until the last time I saw her. She managed her suffering so discretely, I didn't avoid visiting her like I did with my father, who was miserable and highly dependent on others - it broke my heart to see him like that. (I wrote a post about it on my other blog, neuropsychbookwork, titled "why neuropsychology is important".
The lightbulb moment was understanding that our culture is not comfortable with the idea of death and dying (knew that already), and that if someone announces they have condition that may lead to their untimely demise (like my brain tumours), it makes people have to confront their fears of death, dying, suffering, and denial of our mortality. Keeping in contact with someone who has such a condition can be too much for some people to bear, leading to the common comment after someone, usually someone elderly, suffers an acute health event like a heart attack or stroke "it would be better if it was over quickly, so that they don't have to suffer." This kind of thinking is couched in terms of wanting the patient not to suffer, but it also comes from a place of not being comfortable with the idea of seeing someone suffer, or actually doing it. My father suffered for several years before he died, but he was still able to enjoy music, physical contact, and our presence up until the end. Even people with profound dementia have been shown to benefit emotionally from companionship and pleasant music, having less behavioural issues afterwards, compared to agitation after unpleasant interactions and music they dislike.
I have the chorus of Lenny Kravitz's song "it ain't over 'til it's over" on a loop in my head as I write. Even if someone is on their deathbed, they are still probably aware of their environment at some level. Someone with a potentially terminal illness shouldn't be avoided because they might die some day. If we took that approach, we wouldn't see anyone. We're all going to die some day. People with incurable conditions are just going to do it sooner, and it's an uncomfortable thing for us to face. But should we deny them our company or contact just because we feel uncomfortable? Far better to rejoice in every day that each of us is alive, to accept that death will claim us all in the end, and to seize each day for the gift it is. Carpe diem!
So, if I could do it again - I probably wouldn't tell many people how serious my brain tumours might be. I feel like I've marked myself with a big target, and that some people are avoiding me like the plague because they're uncomfortable with my frankness. My school friends used to say I was the "biggest brain in the maths class without a calculator, but has no common sense."I think that still holds true. My tendency to be open and honest in sharing information with others has made people uncomfortable, and I'm feeling a little alone and foolish. It's hard to stop being open and honest, it would be suppressing part of my nature, but maybe I should have been more discreet. Oh well, I've learnt and developed from the experience, and maybe others have as well.
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.
