I've been quite sleepy this week. Not sleeping well at night because my head is still to tender for me to lie on my right, and dosing through much of the day because I didn't sleep well at night. I spent most of Monday, Tuesday, and Wednesday in bed sleeping, and again yesterday. Today (Friday) my mother came in to visit and we discovered that we both prefer to sort through household items when we have company, so we sat together in the boys' bedroom and sorted through their clothes together. I started to pull out things for Nathaniel's year 4 camp, which starts next Monday, and I managed to get all the boys' clothes sorted and put away this evening.
I had to see my oncologist this afternoon (20.3.15) to get a patient travel assistance form and some income protection insurance forms completed. I asked him if my remaining tumour can be treated with radiotherapy as well as the Avastin. He's asked for advice from Melbourne, which I hope will come next week.
I was sad to discover more information about my most recent surgery. My brain was reported to be quite swollen when they opened me up, and there was tumour growing along the walls of the lateral ventricle and into the basal ganglia and internal capsule. This sounds more extensive than the residual tumour that the surgeon said was wrapped around a blood vessel and didn't want to remove it in case it left me paralysed.
I felt gutted after reading the surgeon's report - not because he hadn't told me all this, but because it sounds pretty damned serious, and I'm hoping and praying intently that we can do something about it. I'm also counting my blessings that I'm still alive and able to get around, both physically and mentally.
I'll update the blog once I discover if the remaining tumour can be treated with stereotaxic radiotherapy.
David starts his year 7 rowing tomorrow morning (March 21st, 2015). I'm looking forward to seeing him and his friends have their first experience in a mixed 8 (there were 23 boys and girls who put their hands up for rowing as their summer sport, tomorrow will be their first go on the water). I was bow in the first ever girls' 4 at Launceston Church Grammar School in 1985, and was the first girl at the school to ever receive a "half-blue" for contribution to the sport. I'd never done particularly well in any sports before (swimming and netball were the only sports that I contributed to, I was ok at swimming, but pretty uncoordinated for netball)
I'm still feeling gutted after seeing the surgeon's report today. It all feels very surreal, and I just want to feel better and to help my family to be happy and positive with each other, rather than stressed and anxious and argumentative. I'm trying to turn my worries around and to eliminate them, so that I can focus on all the good that has happened in the past, and that will happen in the future. I'm not giving up on anything, even though many things seem quite surreal and unbelievable at present. I'm going to keep giving thanks that I've continued to survive, and to keep working on prayer, visualisation, and meditation to help cure myself and ensure a healthy and happy future ahead.
Must go, time for my nighttime sleep.
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.
