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, 11 November 2013

3am blues

In an effort to sleep better, I tried something different last night. I banished my apple devices from my bedroom, read a book by electric light, and stopped when my eyes grew tired, at about 930. I went to sleep straight away, and woke in the last hour. 930-230. 5hours continuous sleep. Better than snatches of 2 or 3, and if I returned to bed now, I might get another 2 hours before the boys come for their morning autopilot cuddles. But the reason I'm blogging now is the reason I'm out of bed - I'm feeling so alone, waking in the wee hours, and it troubles me. 

When I'm reading other people's posts on Facebook until 10 or 11 at night, I feel connected to others, even just through knowing what they're doing and seeing the parts of their lives that they're sharing. Not doing that last night has made me aware of how I'm getting less contact from people who were contacting me regularly when I only had breast cancer. Now that I have had a grade IV  brain tumour, things are different, I get that. People who were able to kindly share their own experiences with surviving breast cancer probably feel they have less to offer. My neuropsychological colleagues are probably in shock, because this is the worst kind of tumour, the one we all fear, the one we don't want to learn about because it might be tempting fate, the one that makes neurosurgeons and neurologists drop a tone in their confident exuberance and take on the manner  reserved for very serious diagnoses.

May I repeat, I am not my diagnosis.

I have had two tumours removed from my brain, I am having treatment for them, I am going to fight as hard as I can to stop them recurring, and I am very much alive right now. I need to sleep a couple of times during the day, I'm irritable at times, my body aches in the knees, wrists, and ankles, my legs and arms feel like jelly, but this will pass. There are only 10 radiotherapy treatments left, then 3 weeks off to recover, then 6 cycles of chemotherapy (5 days on high dose Temodal, 21 off). My bloods are behaving right now, people say I'm looking well, and I'm making more dietary changes that should banish cancer from my body.

I need to figure out how to feel connected to others again. It seems pathetic to be awake at 3am and feeling miserably lonely, though part is a fear that people find my diagnosis too hard to deal with, and are avoiding me because of it. There's also the problem that a lot of my social interacting has been via email in recent years, and I haven't been a good correspondent lately. I know the truth is that people are probably giving me time to get through the treatment, or busy with their own lives, or sick of my blog. If you're reading this, and have the time, please send me a email, just so I know you're there. I might not be able to send a lengthy reply, but it will help me feel less alone.

I'm trying to make the most of each day, enjoy it to the full and all that, it's just hard to do it consistently, and I miss the people I used to work with and interact with regularly. Old neuroses that they're avoiding me because they didn't really like me anyway are surfacing, which means I really should go back to bed and get some more sleep. Things will be better in the morning.
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