I'm feeling surprisingly good, and so darned happy to be alive!
The cynical part of me worried that maybe I'd made enough progress in this life and that I'd check out during surgery yesterday, so it was a relief to struggle to wakefulness in the recovery room at 630 last night, 4 hours after I'd been joking with the anesthetist about... Something that seemed incredibly witty at the time, but was obviously so bad that he put me out before I was fully in the theatre (smart move).
Yesterday got off to a slightly rocky start - I woke at 430, wrote an email to my wonderful neuropsych colleagues, took my thyroxine at 530 so that I could have a good breakfast at 7, went back to sleep, and woke at 728, two minutes before I was supposed to start fasting! I ran downstairs, deflecting childish requests to play with my iPhone and iPad, to search the fridge for something I could scoff in two minutes. Cold pizza (one bite), two cold chicken kickers (surprisingly tasty) and a sustagen - that's all I had for breakfast. I'd meant to have a leisurely coffee, omlette with smoked salmon, and a yoghurt. I was starving by the time we got to the hospital at 1130, but wasn't hungry after the surgery. I just had a horribly dry mouth, which was relieved by the ambrosial taste of crushed ice with blackcurrant cordial on top. Who knew something so simple could be so good? (apart from a wise nurse...now the secret it out, I hope they won't have to shoot me;)
The hours before going to hospital flew by - labeling pencils and texts for Nathaniel's first pencil case, filling in long-overdue medicare and pet insurance claim forms, writing a list of the boys' favourite foods for Ben...it was good to keep busy, it helped a lot.
Ben and the boys stayed with me until after 12, then the doctors came to say hello. Lovely cheerful people on the team, much more pleasant than my last GA at another hospital, where only the admitting nurse and orderly were friendly - the staff in the operating suite just looked straight through me,and I was wheeled into a theatre of unsmiling faces. On that occasion, I was very drowsy after the procedure, which didn't stop a nurse from encouraging me to get up and dressed when I still needed to sleep. I tried to stand, and felt dizzy, and another nurse said I should go back to sleep. An hour later, the first nurse came back and told me I needed to get up and sit in one of the armchairs while she called Ben to collect me. I struggled to stay awake in the chair, and slept for another 5 hours when I got home. I know it was a day procedure, but there were lots of empty beds in the suite, and I felt like the nurse just wanted to get me out of the bed so that she could make it, irrespective of how I was doing. So it was great to be fussed over and cared for so well after yesterday's surgery. One nurse said I earnt three gold stars...I'm not sure why...maybe it's because I was, and am, feeling incredibly happy and content that the surgery is over.
I have a neat lateral wound running from the midline to my armpit, and a couple of drainage tubes. It only hurts if I move my arm rapidly. I also have an infusaport attached under my right clavicle. That one hurts a bit more.I felt pretty dopey last night, and I slept pretty well, in 30-60 minute bursts - they had me on a PCA machine (patient controlled analgesia), so they were doing hourly obs and I had to have oxygen, which was a bit irritating. As was sleeping on my back. My back thought so too, and went into spasm around 420. It was a good time to call the nurse, get up, and make a trip to the loo. It felt like a major achievement, even though I felt dizzy and staggered backwards a couple of times, like Dad used to when his gait was failing. Such delight in being on my feet, in eating and drinking, and sleeping.
I've had a great day, with flowers and visitors and chocolates, and now I'm settling down to sleep. Every day is a day closer to beating this thing, and I am feeling so much love for, and from others. It is wonderful to be alive,.
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.
