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.


Sunday, 2 June 2013

I'm getting sick of this

Back in hospital, the second time in 24 hours. I had a fever at home last night, they admitted me, did blood tests and gave IV antibiotics. Although I felt hot overnight, my temperature stayed below 37.5. I was keen to leave, and was feeling relatively well (not that I can remember what okay feels like), so they let me go at lunchtime. 

I had a lovely lunch at Seaport with Ben and the boys, went home and slept on the couch from 230-4. The boys woke me with noisy playing (sounded like they were murdering each other, interspersed with giggles). I got up, and my teeth promptly started chattering. My temperature was 37.7, and went up to 38.3 over the next half hour. 

I rang my rad onc, and he said I needed to go to emergency. He said that the patients who get into trouble are the ones who get a fever and stay at home to see what happens. He said it was possible that my white cell count had fallen in the last 24 hours, and that I had an infection, even with the G-CSF.

He was right. My white cell count has fallen from 3.0 to 1.7 since yesterday, and my neutrophils are down to 0.5, despite the G-CSF. So I get to have IV antibiotics for a couple of days, and enjoy the company of the lovely staff of the LGH. It's annoying to be unwell, but kind of good to have proof that I am. I was beginning to think I had a sophisticated form of hypochondriasis.

Last night the emergency department sounded like a bizarre symphonic Dante's inferno- the regular beeping of machines, a baby who cried for hours, an elderly lady who was confused and in pain, and the loud questioning of an inebriate who had injured his head. I can't wait for tonight's performance.... 

I never realised how much I took my health for granted. Good health is a precious gift, appreciate it and look after yourselves. Xx
Posted by at