This isn't a walk in the park.
Mentallyt, I feel incredibly alert at times, particularly in the long hours overnight where I can't sleep, thanks to the dexamethasone that is reducing the oedema that remains after surgery. I snatch sleep when it comes near me, but often the body is exhausted and my mind is wide awake, thinking of all the wonderful things I want to do with Ben and the boys in the coming years.
I tried to fool myself to sleep last night by matching my breathing to Ben's deep sleep rhythm, but it still didn't bring on the sleep I needed. It's not that I'm not sleeping at all, it's just that I'm not sleeping as long or as deeply as I need, though that's getting better over time. I could almost swear that I had 3 naps today.
In terms of physical recovery, I'm astounded at how weak I feel. I need to use my arms to stand from sitting on the sofa. I leant down to pat Ginny this evening, and couldn't pull myself up on the door frame. So I crawled to the sofa, rested my forearms on it, and managed to stand from there. It's like the power in my quads had almost completely gone.
A physio friend suggested that I do three sets of 8 sit to stands at the dining table, with 30 seconds between sets, just once a day. I tried it after my crawl to sofa to stand episode tonight, and found that I almost needed to pull myself up with my hands. My thighs are just so weak!
This has also affected my confidence in walking - I'm ok if there's something on my right side, and I find myself wanting to hold someone's arm on the right, just in case. The last thing I need is a fall. I'll be borrowing a forearm crutch from the hospital tomorrow, that might help me feel a little more stable. Not that I feel unstable in the house, with its nice straight halls and minimal trip risks, it's just a little less safe outside, with uneven surfaces, and unexpected obstacles (like the vine that tripped me on Tuesday morning).
The visual field changes are tiring. I've lost my fascination with the way my brain is trying to compensate for the missing data, and am instead having to learn how to deal with reading on screens. My iPhone is a little too small at times, and my iPad is annoying because I can't feel the keys. Getting the cursor in the right position is also a pain, and I don't have five minutes to waste on selecting text.
Ben bought me a macbook air, and I've fiddled with the accessibility options, which is helping me to zoom in and use large font, so I'm finding this more fun. It's especially satisfying to see that my touch-typing hasn't deserted me!
Emotionally, I'm a bit up and down. I still feel a wonderful sense of calm and bliss at being alive, but I get frustrated when others keep acting as if I were normal - nagging kids, husband irritated when he told sofa-seating me to tell child in bath to leave water in for him, me telling him to do it himself as I was resting after just making dinner for everyone (smoked salmon patties with coleslaw and sweet pototoe salad, thanks dear people in Sydney). I know it's a bit much to expect children and husbands to remember that one is feeling under the weather, but it would be nice if one didn't had to remind them. And it would be nicer still if they could cease and desist from their petty bickering. I'm going to watch the 123 Magic DVDs tomorrow and see if I can help increase desirable behaviours in my offspring. Watching a bit of it today has already resulted in the boys doing some furniture-moving upstairs, where one bedroom is going to become the lego hobby room. Paradise!
The only other interesting thing to report is my craving for natural foods. I've made a huge bartch of greek yoghurt mixed with almond, oats, hazlenuts, walnuts, chia seeds, sunflouwer seeds (basically, whatever I could find in the pantry), and I eat it with blueberries and flaxseed oil. It tastes utterly devine, and my body must be craving minerals. I also enjoyed a wonderful haloumi and salad sandwich brought over by Jenny, my lovely neighbour. I've always wanted the chance to get to know her better, she and her husband did the hippy trail through south-east Asia in the 70s, and she practices yoga and other healthy habits, as well as being a delight to know. She's happy to pick things up from the shop for me, and just to drop in, so I'm feeling very glad to be living in a lovely house with a kind lady next door. (Did I mention she makes THE BEST minestrone I have ever tasted?)
The next 28 weeks of treatment could be very pleasant, socially. And coming into spring and summer is a nicer way to start treatment. The sunshine and flowers always lift my mood.
Oh, and did I mention I plan to go and buy a prosthetic breast from Judy's Body Fashions in Yorktown Square next week? Time to regain some symmetry on the boob front, the skin has healed up now, and summer's coming!
Feeling a little like a spring lamb now. Time to gambol and frolic to sleep.
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.
