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.


Wednesday, 4 June 2014

Recovery report - going home soon

Five days after surgery and the pain is settling down. Should be home tomorrow or Friday. I Slept deeply last night, apart from an annoying dream in which I kept pressing the nurse-call button to ask for pain relief, and they didn't bring it. Problem sorted when I woke up and made a real request for pain relief and was given it. 


Then I went to sleep again and dreamt that I was trying to get ready for a conference presentation that I'd promised to do, but I couldn't get my clothes on properly, and nurses kept wanting to take my obs, and I couldn't find my presentation files, they were all messed up and kept falling on the floor. 


Problem solved when Alison Standen came by for a quick visit. It was so good to see her again, for the third time since 1985. We only had two years at school together and lost touch after then, seeing each other again for the first time last year. Each time I see her I feel so happy, and would love to sit and talk for hours, there are so many things to talk about. I'm sad that we were out of touch for so long, but glad to be seeing her again now, along with other old school friends here in Tasmania - Jennifer Catenacci,  Philippa Durante, Edwina Mullenger, Sarah Gunn, Fiona  Payton, and my dear cousins Stephanie Byard, Fran Williams and Christine Bennett. When I'm out of hospital, I'm having long-overdue coffees with  Jane Wardlaw,  Bridget Campbell, and Brooke Bell, and would like to catch up with people from work as well.


I'm pooped now from writing that, and from an earlier walki up and down the hallway. I'll have a nap in my recliner and do some more walking around lunchtime. It's nice to be able to sit up without too much assistance and pain. Sitting out of bed, and walking each day, seems to be helping with my recovery. (Lying in bed isn't very comfortable with a sore abdomen)


I'm looking forward to going home. My old housemate Debbie is coming over to stay on the 16th, which will be fantastic, for her company, and for some practical help.


I hope this is my second-last visit to hospital. The last being a prophylactic mastectomy when I'm recovered from all this.  Keep your fingers crossed for me.


PS feeling sad at the news that Angels singer Doc Neeson died from a brain tumour recently. The Angels played at our Queen's College ball in 1987 or '88, at the Melbourne Town Hall. I remember dancing right in front to the stage, between the speakers, with my hands over my ears because it was so damned loud ( very daggy 80s dancing, swaying mostly). Then I realised that Doc was staring right at me, mirroring my dancing. Making eye contact with him broke me out of my reverie, and I felt simultaneously embarrassed, exposed, vulnerable, and not sure what to do next. It was like I'd been picked up, turned around, and put on the floor again. He gave me a grin and kept singing. There was kindness and curiosity in his smile (I wasn't a fan girl),  and I feel for his family and loved ones at their time of loss. 

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