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.


Tuesday, 25 June 2013

Infected port

8pm, Tuesday 25th of June

And my run of good luck continues.

I'm still in hospital, and the pathology lab just called the ward to say that they've grown a gram-positive organism from my port. So the nurse had just de-needled my port, and I'll have to have a cannula put in my arm for my IV antibiotics. Ouch! More bloody needles (forgive the pun). It's much more comfortable getting infusions through the port, and the back of my hand is still resentful from the last time they put a cannula there and the infusions "tissues" (leaked out of the vein into the surrounding skin. Very ouchy!)

It takes 48 hours for final results from blood cultures to come back from the lab. The cultures they took on Saturday night were negative, as far as I know. Though they were from my arm, not the port (the nurse couldn't draw blood from my port on Saturday night or Sunday morning). It's the cultures they took last night, 24 hours ago, that have grown something. Probably a surface contaminant again. The nurse said they don't want me to end up in ICU after getting a septic shower, though I pointed out that I've had IV ABs and fluids through it for the last 24 hours without a problem (poor nurse, I was giving him a hard time). Still, the needle needed to come out tomorrow anyway, as they only leave them in for a week. So I won't complain, I'll just hope this is the last complication. And that I can get my infusaport  removed before I start radiation. It needs to be flushed every 6 weeks. I'm not keen to have it flushed if it's infected. But I'm not sure I can have it removed while I'm having radiation. 

No point worrying tonight. If my neutrophils have improved enough they might let me go home tomorrow. Though they might wait on the pathology results - the lab will identify the organism and determine drug sensitivities. On past experience that can take longer than 48 hours.

Time to sleep. I've had some amazing dreams while I've been in hospital. The first night I dreamt that I was sleeping on two very squashed and unhealthy-looking people who were stacked on beds below mine. I wanted to help them, but couldn't lift my bed up. Last night I dreamt that I took my kids for a play at a place with a pool, all the parents went for a swim but someone tidied up their clothes and I couldn't find mine - I wasn't starkers, but I felt very exposed. Then I dreamt visitors were at mum and dad's front door, and I couldn't find a thing to wear - there were lots of clothes, but none were mine, or at least not the ones I wanted to wear. There were lots of clothes that I remembered and had discarded over the years, but nothing suitable to put on. A metaphor for my life? Feeling exposed, stripped bare, unsure of what to wear as I step forward to meet the future? The good thing about both dreams last night was the feeling that it didn't matter what I wore, that what I had on was fine, even though I was feeling peculiarly exposed and in unfamiliar apparel, that others didn't care what I wore, even though I felt changed and uncomfortable.



Posted by at