I've slept a lot nearly every day this week, and haven't achieved much around the house.
I was supposed to start Avastin on Wednesday, but the surgeon said i should start it next week. The following link gives me hope that it will help me start to feel less tired and more able to get things done around the house. http://www.btsurvivor.com/bb/viewtopic.php?t=2166
We're still waiting to hear if we should have stereotaxic radiotherapy for the tumour that the surgeon couldn't take out. This would need to be done in Melbourne, and would only affect the area of tumour that was inoperable. However, the Avastin would limit angiogenesis in the residual tumour, and would hopefully also stop any new tumour from growing anywhere else in my brain.
I've been sleeping poorly at night, and having very strange dreams in which my reality seems to be turned upside down or inside out. I would just like to feel normal again, and to not be bothered by the concern that this thing could kill me, or that I've wasted my life in some way.
I need to sleep now, it's after 930pm, and I've found that I sleep very well in Nathaniel's single bed. I tried sleeping between the two boys in my bed last night while Ben was in Hobart, but it grew too hot, and although they don't wriggle much, I didn't sleep well.
David has rowing at 7 in the morning, I hope I wake feeling energised and refreshed enough to go and watch it, it will be good to see his second experience on the water.
A blog started in 2013 to inform family and friends about my treatment and progress for early breast cancer. Then I went and got two brain tumours,,both GBMs, completely unrelated to the breast cancer, so the blog continues.
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.
