Back from seeing the physio in Outpatient Rehab. She said I was looking much better than before, and was impressed that I was walking without the forearm crutch - I think I gave it up over a month ago. She said my right foot is catching on the ground a little (it was the left one before), and I've noticed that this is also happening at home an on uneven surfaces, which presents a falls risk. It's not too bad, but it makes me feel vindicated in wanting to bring my next MRI closer - it doesn't make sense for me to have sensory changes in the right side of my face, or in my right leg, unless something is happening in my left somatosensory cortex. I had the MRI at 4pm yesterday, haven't heard anything about it yet, haven't looked at the disk with the scans - thought I'd save that for seeing the neurooncologist on Thursday. I'm determined to have this holiday with Ben and the boys over Easter, and to make the brain changes disappear through sheer will-power, if I must!
I came up with a good analogy while talking to the physio today: having had two GBMS, and knowing that there may be more gliomas, is a little like finding myself walking a tightrope over a deep gorge with a crocodile-infested river below. I've never walked a tightrope before, I don't know how to do it, but it's where I am, and I know that if I keep my balance and just keep walking one step at a time, I will eventually come to the other side. If I look down and worry about the chasm, or the crocodiles, I may lose my balance and fall, and I won't be taking the steps that I need to keep taking to reach my goal - firm ground on the other side. I have to trust that I will make it. There's nowhere to sit down and rest, my breathing is the only thing I can use to help maintain my balance and focus. Though the view is amazing from up here, and I can hear the wind and the birds, I can feel the breeze blow by my face, and I know it is truly wonderful to be alive, even if there are snappy dogs behind and within me telling me to hurry up, to remember to take my pills, to be less forgetful, to control the children, to tidy up the house, put the laundry away, pack the bags, cook dinner. These things aren't as important as keeping my balance on the tightrope, taking one step at a time, and focussing on reaching the other side. But, oh! the world is so beautiful from up here, even the gorge, the river, the crocodiles - they all have their place in existence.
Ok, better stop there before the gap between being poetic and seeming crazy is obliterated.
Why do I care so much about my reputation (see my last post)? It comes from being acutely aware of other's perceptions when I was a child, of being sensitive to other's opinions and perceived or actual criticism, of not feeling that I was worthy of love. Putting all this out there is a little like disrobing in public - I'm not sure that people have noticed that I feel exposed - or maybe I was wearing beautiful clothes underneath the outer cloak that I didn't know were there. People keep sending me kind and supportive emails, letters, and messages, and I'm not sure what I've done to deserve it - but I'm glad, because I feel appreciative and warm to every one who has.
I talked to the physio about the experience of being a patient, and how being a clinician often makes it hard to ask the questions about that experience. I might have a trial run of talking about such things to our allied health department before putting a conference presentation in - it would be good to test it in front of a supportive multidisciplinary audience before trying it in front of my profession. I suspect that I might have something to offer to help improve clinical practice in a range of disciplines, at least I hope so.
Too much introspection for one day. There's a load of clothes to hang out, sheets to put away, lunch to make and eat, and packing to do. Visualise a healthy brain for me, if you have the time and inclination. There's so much I want to do on the other side of this tightrope.
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.
