Feeling mournful. I've had a wonderful life, and I don't want it to end. I hope the new MRI scans on Tuesday and seeing the new neurosurgeon in Melbourne on Wednesday or Thursday gives me a renewed sense of hope. I haven't given up hope that I'll survive this, but the neurosurgeon in Hobart said he hadn't been able to completely debulk the tumour because it was in my lateral ventricle, and he hadn't wanted to cause me any impairment. He said it was up to the oncologists to treat it with chemo and radiotherapy, and thought that maybe I could have a lower dose of Temodal than before, given that I had a bad reaction to it last time.
The oncologist in Melbourne said such bad reactions to Temodal are rare, but they do happen, making people very seriously ill (his last one ended up in ICU), and that he didn't think I should have it again.
He said that the issue of radiotherapy was a technical one. We already knew that I couldn't have radiation again if it was in an area previously irradiated. My radiation oncologist will look into it, but one problem with the new tumour is its proximity to the top of the brainstem, which they don't like to irradiate. So I'll see a different neurosurgeon next week, in Melbourne) to see if there's anything on the scans that can be safely removed. If there is, I want it out. If there isn't, I'll be starting Avastin, one infusion every 2weeks for 12 weeks, as far as I know. I'm determined to take our little family on lots of short holidays over that time, I just hope I can get over the tired feeling that's been affecting me each day since we started changing my anticonvulsant from Keppra (which can cause unpleasant thoughts and other side effects like panic symptoms) to Epilum (sodium valproate, which can be sedating). I'm going to push through the fatigue and do something in the garden, it usually seems to help lift my spirits
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.
