One week to go until the conference in Adelaide. I'm supposed to submit my final powerpoint slides by tomorrow, they've asked all the presenters to do it so that the technicians can load the slides on the computers before the conference.
Over the last two weeks, I've spent 4 mornings sitting with my laptop in coffee shops, writing down thoughts for my conference presentation, trying to organise and condense my experiences into a 30 minute presentation. I spent another morning at home working on a first draft of a powerpoint presentation, but I wasn't happy with it. My "cheer squad", as Ben calls them, gave useful and mostly positive feedback, but I'm still feeling quite overwhelmed by the task that faces me. There's so much I want to talk about, and so little time to do it. I thought I'd found a solution: giving a powerpoint- free presentation; so I spent another morning writing a talk that I can stand up and deliver, with no visual aids at all. I wrote some good paragraphs, but it was hard not to get sidetracked, and then an old friend said I should include references to validate my experiences, which made me feel even worse. I don't have the time or energy to look up references, and I have deliberately avoided reading other patient experiences because some are very confronting and distressing to me. And I only have 30 minutes. Other friends reassured me that I don't need to provide references, that my experience is real and valid in itself, and that people will want to hear my story and unique perspective and experiences, that the audience can find references for themselves if they want to.
No wonder I've been feeling utterly exhausted each afternoon - I think I'm using a lot of energy in the concentration required to sit and write, and the struggle with working out how to give the best talk I can in 30 minutes. I've found I need to do my Lumosity training in the morning when I'm fresh. Doing it in the afternoon or evening results in lower scores on most tasks, but particularly the ones requiring speed and attention. I don't think that Lumosity has improved my cognitive abilities over the 5-6 weeks I've been doing it. I've got better at most of the tasks with practice, as most people would with repeated practice on task. The only benefit I can see in it is that it might give me advance warning of any tumour-related decline in cognitive functioning if I'm diligent about doing it the same time each day (i.e., in the morning, after breakfast, without any distractions).
The problem with having had a GBM is that I worry whenever I feel excessively sleepy, when my face tingles, when I drop things, when my walking still feels a little uncoordinated, when my head aches (not often), when noise is irritating. My last MRI was in October, so the next one will be due in January if we stick to the 3-month schedule. I might be able to get one in December if I continue to be worried by the symptoms I mentioned above.
I need to see my radiation oncologist soon, anyway, so he can fill in the specialist's report section of my Income Protection Insurance. I'm also going to lodge a life insurance claim, as my policy covers me for terminal illness. Because GBMs are not curable, they probably meet the definition of terminal illness, and although I hope not to die in the next 12 months, it's impossible to say when it will happen. Our financial advisor said the insurance underwriters will probably prefer to pay out the policy now, because it will cost them less to do so now than it would for them to pay it in a few years' time when the payout will increase in relation to the CPI. Better to be able to benefit from the payout sooner, while I'm alive, rather than later. It's a dismal thing to think about, but the good thing is that they don't ask for the money back if someone diagnosed with a terminal illness gets a payout and then survives.
Damn, I'm tired. I need to get some sort of slides together to email tomorrow - maybe just a title slide, a couple of photos, and a link to this blog, so that people can read my detailed rambling musings in their own time.
I've been getting a weird feeling at the back of my nose/top of my mouth, a little like I'm going to sneeze. It's been coming and going for a few weeks now. I don't know if it's an aura or something more sinister. Time to take half a clonazepam and go to sleep. If I have another seizure, I won't be able to drive for another 12 months.
Goodnight
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.
