It's Friday the 23rd of January. 17 days since the right temporal lobe tumour was removed. My staples were taken out last week (not too uncomfortable), the wound has healed well, but it's not comfortable to lie on the right side of my head. I've been getting by okay with one Endone and one panadol every8-10 hours for pain relief, and have been managing a decent 10-20 minute walk each day, though I feel a little unsteady on my feet, and nearly took a tumble in a gutter yesterday while walking with the boys.
I think I'm sleeping ok at night - the Dexamethasone doesn't seem to be disturbing my sleep as much as it did after the first two surgeries in 2013, but I seem to be sleeping a lot of the time during the day. Like now - 1152 am, and I feel like lying down and sleeping, only I'm waiting for my neurosurgeon to call me back from his spinal clinic - I want to ask him if this amount of fatigue is normal, and if I can take the boys to Queensland for the last couple of weeks of the holidays. My cousin has asked if we'd like to visit. The thought of family, puppies, swimming pool, someone else's cooking, and warm weather is very enticing.
I'm trying to stay hydrated, because I'm feeling dizzy a few times a day, and quite often have a strange sense that my body is moving even though I'm sitting or standing still - I'm not sure that it's true vertigo, but it's very disconcerting. Many things seem strangely unfamiliar - from television shows to webpages that I've visited before, not that I'm watching much tv or reading much on the web. Things just seem not quite right - familiar, but not as I remember them. I've often read of people having a sense of deja vu before seizures, and sometimes a sense of jamais vu ("never seen"), but I haven't had any seizures since the last surgery, nor any symptoms of auras, only this niggling sense that things aren't quite right, that I'm not sure what day, or time of day it is, and a day when Nathaniel insisted that I had gone upstairs to buy a new computer game for him, but I have no recollection of it at all.
When we started to do pre- and post-operative neuropsych assessments on epilepsy patients at St Vincent's in the mid 1990's, we decided to do them 6 months after surgery, based on patient reports that it took them at least that long to get over the fatigue and headaches. I think we might have also found some research evidence backing up the need for 6 months to recover. My nursing friends tell me that it takes 3 months to recover from every hour of general anaesthesia, and that 6 months to recover from a 2-hour brain operation is in the ball park.
Six months seems like an awfully long time when I'm the patient. I'm not enjoying the fatigue, the sense of being easily overwhelmed by excessive noise or drivel on the television, and the effort it takes to maintain my concentration.
I wonder if rehabilitation services are routinely offered to patients after brain surgery by any public or private services in Australia or elsewhere? We accept that rehabilitation is needed after stroke and acquired brain injury, but I'm not aware of it being offered after surgery for brain tumours. I had to refer myself for outpatient rehab after my two surgeries in 2013. I've been very lucky that none of my tumours have caused me major focal cognitive or motor deficits, but I'm wondering if a spot of allied health input might help me get through this recovery phase. I can probably do a little of my own rehab, but I found the team input very helpful last time, and it was good to have others to refer to help me structure my time and set achievable goals.
Must go print out the booklists for the coming school year, need to drop them off today when we get David's new blazer. The boys are due to start back at school on February 2nd
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.
