Hi
the pins and needles feeling in my right hand has decreased, but there still seems to be some sensory loss. I'm wondering if it's a new peripheral neuropathy, or if I should just go and get a massage. My oncologist hasn't responded to my email, so I might call him later.
This is very annoying and slightly stress-inducing. I know I have a serious brain condition that could come back and bite me at any time, but I don't want to spend the rest of my life worrying about it. I have so many better things to do. Like planning and taking holidays with my family, enjoying time in the garden (the roses need dead-heading and there's mulch to spread), seeing friends in Launceston after too long a break, talking to family and friends interstate (though I'm now avoiding holding cordless or mobile phones next to my ear, as I don't want any electromagnetic radiation to spur new tumour growth)... A lot of the things I need to do are mundane, like putting the laundry away, but it causes a sense of chaos if they don't get done. Ideally, I'd like to do important, high-impact things, like communicating with the people I care about, getting my students' research projects published (there should be at least 7 papers in total), writing stories for my kids, maybe writing a book - but the mundane things need to be done as well.
I try to turn household tasks into Zen meditation sessions, where I become absorbed in the task at hand, and eliminate worry and ruminations from my mind. That's easier said than done. My life is running in slow motion before my eyes, and I keep getting stuck on things I could have done differently. Like not spending so much on renovating our house in Melbourne. I need to re-route the tracks so that I think about things that I did well, but I don't get much pleasure from that. I prefer to remember enjoyable experiences, like holidays or catching up with people. I can't change the past, I can only affect the present moment, and hope not to repeat mymistakes in the future.
It doesn't help that I have become painfully aware of my personal foibles in recent months. I've realised that I can be not that pleasant to live with, but I'm trying to practice patience, loving kindness, and mindfulness so that my perfectionistic tendencies don't have a negative impact on anyone, especially my family. It's a struggle! As a friend said yesterday, there are mental scabs that we can keep on picking, but if we want them to heal, we have to leave them alone.
Half the day is gone already. I've printed out the school reports, had some breakfast, and prepared a pet insurance claim form to send off. I've collated all the terminal illness forms, but need a bigger envelope for sending them, and someone who is not my spouse to sign as witness.
I need to keep focussed on the to-do list, and forget that my time on earth may be prematurely cut short. That's how I functioned before the GBM, it's how we all function. We know that we'll die some day, and that it could be sooner than expected, but we pretend that we have all the time in the world. If I acknowledge that I may not have all the time in the world, I start to feel a bit like Chicken Little ("the sky is falling!"). I need to take a deep breath and file thoughts about the unknown future away, and just keep focusing on what I need to do right now - especially with school holidays and Christmas coming!
I'm at peace with the thought of dying, whenever it happens. I know that Ben and the boys will be okay if it happens in the next few years, and that I will always be in their hearts. I'm not in any hurry to do it, and while I'm grateful for being alerted to the finite qualities of this life, I also think that fate was a little rude in making me so acutely aware of my mortality. I just have to make the most of the opportunity, and navigate a serene path through the mundane and meaningful aspects of experience.
Off to post that claim form. I have the first part of my OT driving assessment on Friday (the off-road, driving simulation component), and the on-road test on Tuesday. Fingers crossed that I pass, and that I'll be driving again for Christmas
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.
