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.


Saturday, 29 June 2013

Cycle 6, day11 (at home, recovering)

Saturday 29 June, 2013. 813pm

That's half the year nearly gone. Five months since my mastectomy.  Eleven days since my last dose of chemo, nine days until my radiation starts, daily (Monday-Friday) for four and a half weeks. Then Tamoxifen tablets every day for the next ten years. Early menopause, here I come (though I suspect it's already started, hot flushes aren't fun).

I feel utterly drained of energy. My legs hurt when I climb the stairs, and I had to pull myself up by the railing today after I walked Ginny down to the park, back up the hill, and home. It's a strange thing when people tell me I look well. Looks can be deceiving. I feel like one of those frail old people you see, struggling to walk unassisted. It's going to take a while to get fit again. I get fatigued just taking towels out of the linen cupboard. (good motivation to get very fit after all this is over, I don't want to be a feeble aged person).

I had a very deep sleep today, one of the ones where you wake up and your body feels like lead, and it takes effort to move it, and all your willpower to get out of bed. The process might have taken half an hour, but I was dehydrated and needed to get to the loo, before the combined sluicing effects of lactulose and augmentin duo created a catastrophe. I've started taking Flagyl tonight, because my temperature has been in the 37 - 37.7 range, and Ben thinks Flagyl is stronger against anaerobes than augmentin. Handy to have a doctor in the house, though I think he'd prefer not to have to worry about my health. I'm hoping my temperature stays down, I thought I was leaving hospital for good when I walked out on Thursday.

Ginny and I met a new dog in  the park today, a sweet little silky Maltese terrier called Molly, who wasn't at all fussed by Ginny's huge black furry frame. Ginny licked her ear a few times, which was very cute. Molly's owner was pleasantly chatty, and it turned out that she had breast cancer 10 years ago. She hasn't had a reconstruction, and was surprised to hear that not many people have them even these days (it's 15- 20%, less in regional and rural areas). She said she gets some back and shoulder discomfort from being lopsided, but is quite happy with a silicone prothesis that she can use for swimming and everyday. I asked if she'd taken tamoxifen, she said she had for a couple of years, but the menopausal side-effects were bothersome. She was kind and sympathetic, and said it's hard for people to understand what it's like to go through treatment for cancer. I know I didn't, and I wasn't particularly eager to know, it felt like it might be tempting fate...

While it was nice to meet someone who has made it through breast cancer treatment and survived ten years, I felt rather overwhelmed. I just can't imagine what it will be like to feel normal again. I don't know what I will want to do with my life, other than give my children more time and attention than I have before. 

I'm bothered by David's (year 5) homework at the moment. His teacher likes to give them a choice from a selection of six topic areas to do over the term, and he has to finish three by Wednesday. We went out for lunch today to get one project out of the way ("adventure": try four foods you've never eaten before and write about the experience). Ben helped him finish the "democracy" project last week, but he still needs to do two challenges for one project, and start and finish another task. David would rather be doing maths problems each night, like the other year five classes, as would some of the other kids in his class. One of the other mums agrees with me that homework at this age should be simple, measurable, achievable, realistic, and time-based (SMART - pity I didn't invent the concept), so that the kids can get into the routine of doing homework each night and experience success with it. Another mum tells me that the other year 5 classes might be moving towards it because "it fits with the school's ideals" - as a psychologist, I hate it when ideals are used to justify educational experiments. If a kid is given homework that's too nebulous and easy to put off, it's going to be hard for them to feel like they can ever do a good job with it. I wouldn't mind if they were given one project a term to do, plus daily small tasks, but only doing small projects in nine weeks is counterproductive, especially when my son has my propensity for procrastination. I just wish I didn't have to worry about this at the moment.

It's strange though, (watching skeletal pirates fighting ruthlessly on Pirates of the Caribbean, then giving up when they become mortal again ) we're all here for such a short time, we worry so much about little things - the colour of the paint, our hair, our weight, the future. But when everything is stripped away, the thing that matters most to me is the quality of my relationship with others, and an enormous desire for everyone to be kind to each other. I don't know if I'll be successful in focusing on the important things and being calm about the rest after all this is over, and god knows I still get frustrated with the kids being kids, and with Ben being stroppy, but I hope I'll have the energy and focus to be more patient with and compassionate towards others, and kinder towards myself. Though i don't think I'll be able to stop worrying about my children, and hoping for the best for them.