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.


Monday, 3 June 2013

Hoover dam!

Still in hospital, slept all day today, now legs aching intensely, temperature at 38.8 on my oral thermometer, 37.9 on the hospital ear thermometer. 

Just had a pleasant chat with one of the oncology registrars. My final blood cultures aren't back yet, but I've grown some Gram-negative beasties, so called because their outer membrane is impermeable to the violet dye used to class bacteria as gram-positive or negative. Impermeable membranes means tough little bacteria. And, apparently, at least one week in hospital on IV antibiotics. Maybe two or three weeks. 

What fun!

I've been feeling like a drama queen, I don't know many people who've had breast cancer, but I seem to have had more complications than the ones I do know. So I asked the registrar how many breast cancer patients get admitted like I am. The answer: less than 20%. I'd rather be in the 80% who don't get complications, but I suppose someone has to be the one in five. I just don't want to be away from my kids for so long. For any time at all. I'd rather be at home.

Positive reframe time: 
-some oncologists say that side effects prove that the chemo is working, so any residual cancer cells are currently being obliterated. 
-I have a nice room with a view to the south, where the leaves haven't fallen off two oak trees yet
- I'm in the best place for my condition, and the staff are lovely
- the house is tidy and the bills are paid
- an old friend visited today, it lifts my heart so much to see or hear from the people I love.
- there's only one more dose of chemo left
- I have some Pilates socks for walking around the ward, and I'm going to mask up and go walking as often as I can

Now, how to keep my mind occupied...

I downloaded a sample of Game of Thrones on my iPad, but it's too gory and violent for my current tastes. I need recommendations for inspiring and amusing books, nothing too heavy or taxing.

I hate tv, but if I'm going to be stuck here, I've asked Ben to bring in our little one, so that I can access more channels than the basic four on the hospital system. And I can watch DVDs. 

I don't like being unwell. Every time i need to rest, I'll try to pretend that I'm having a luxurious sleep and that I'm 25 again. When life was relatively simple.

Feel free to email, phone, or visit (if you're well). Raspberries are highly appreciated!
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