My neurosurgeon has looked at my recent CT results and compared them to the postop MRI scans. He told my GP that he's not convinced that there's any change between the scans, or that there's any more residual tumour on the CT compared to the MRI images. He suggested I start taking steroids again if I'm troubled by headaches, but I'm not going to do that yet, as I'm getting by on paracetamol once or twice a day. I'll see if I can talk to him tomorrow though, because I've been having some very weird dreams, and bizarre thoughts involving my left hand _ I wonder if the oedema is contributing?
I woke this morning after dreaming that I was trying to teach the boys long multiplication (176x 52, don't ask me why - at least I was getting it right), and last night I had words running through my mind that were in the wrong order, as if someone had printed out sentences and cut up the words and jumbled them up. The meaning was apparent, but it was a little like listening to Yoda from Star Wars. (e.g. Listening meaning it was like apparent Yoda Star Wars was a little Star Wars)
It was like a kind of subvocal word salad - I was worried that I was having a stroke, so I asked Ben if I was talking normally, and he said I was. I slept reasonably well, and today was okay. I went with Ben on the school drop-off and had breakfast with one of the other mums, who brought me home afterwards. I did a little in the garden, but not much in the house, and slept over lunch time because I was exhausted from being out in the morning.
I had a sense of tightness in my chest this morning, and anxiety without any thought associated with it. It was strange and concerning to feel a physical sense of anxiety or mild panic, and I found it hard to clear my mind, or to relieve it with breathing exercises. I started to feel angry at the unfairness of life, but realised that no-one said life has to be fair, and that we just have to make the best of the cards that life deals us, and hope that better ones come along. That's a clunky analogy, I know, but it helped at the time, as did going back to sleep.
It's time for sleep now, I'm going to think of the jacarandas growing happily near our little dog's grave outside the front porch. Someone told me that jacarandas don't do well in launceston, but these two are flourishing on either side of a small weeping Japanese maple with dainty leaves, and I love their rich, green, dense but dainty foliage. Can't wait to see them flowering in a year or two.
Wishing everyone wonderful dreams and reality.
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.
