I love this time of year! The daylight hours are slowly contracting, and the sun seems less intense than at the peak of summer. There is a cool breeze most days, which makes being outside utterly delightful. It reminds me of when I was a kid, and we spent days like this getting in the water, shrieking at the coldness, then getting out and warming off in the sun, either on the concrete at the local pool, or the sand or rocks at Bridport. Some of the best days were in Piper's River, where the water runs lazily in deep sections, or rushes over rocks, making waterfall-spa baths for those lucky enough to swim in it. I can't remember how to get to one spot as we only went there once, but it's probably directly underneath the cable for the final run Hollybank Treetops Adventures, which would make it feel less private and magical. The other spot was a deepish pool at a bend in the river, at the foot of a huge rock with a small cave underneath. Blackberries would dangle down to the water, for a sweet snack while treading water. It was probably only 5 feet deep, but still and somehow warmer than the shallow water, with smooth river pebbles on the base. It was on private land, now sold by the family who owned it. I used to dream about owning the farm in that valley, just so I could play in the river again.
I'm sitting up in bed writing this, after taking the kids to school by taxi, helping the cleaner, and walking the dog. Ben has to go to work early on Monday mornings, hence the taxi. Not being allowed to drive is getting to be a bit of a drag - it's been 5 months now, and while I wasn't up to driving for the first few months, I'm feeling a lot better. My neurologist said I need to get my visual fields checked - I need an eye checkup anyway.
Several people have said I'm looking much better in the past couple of weeks, which makes me wonder how bad I looked before? I was taken aback yesterday when Ben told our neighbour that I "nearly died" in January - I knew I was unwell, but close to death? Nobody told me. I asked Ben about it later and he said I was seriously ill, and could have died. I like those words better. Any one of us could die at any time, theoretically. We stay sane by denying that possibility. Acknowledging it could result in examining one's life, relationships, and use of time, and may result in changes. When we believe that we have all the time in the world, that death will come to us at 100, we keep on with our established habits and routines, living almost on autopilot, hopefully living good lives, but not always the kind of lives we want. There's a sense that we'll always have time to fix our problems, to achieve our dreams, to mend our broken relationships. Having a GBM is like having a guillotine set permanently above your neck. I don't know when, or even if, the blade is going to fall, so I ignore it, and spend each day trying to live as best as I can, resting, eating well, exercising, meditating, reading, talking to people, confronting the reality of parenthood after spending the day imagining obedient and happy children who stay in their beds all night long. It's frustrating that I still get tired, there's so much I want to do, so many people I want to see.
I've been typing for 25 minutes, and am feeling tired. Time for a nap, before Alexia and Christine arrive from Melbourne with their two wee babies. They're staying until Wednesday, it will be so nice to see them. I wish I could drive them around, give them a tour of Launceston, but it will be nice just to sit and talk about babies, and possibly even neuropsychology.
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.
