9pm, 29/4/13
It's so good to be home!
I'm reclining in my lovely warm bed, enjoying silence of the house and the distant sound of traffic. I feel worn-out after a long day in the hospital.
I slept okay last night, from 1230-320 (woke up from another bad dream), and again from 430-730, when the cleaners woke me (don't ask me why they need to change the bins so early in the day). I'd ordered porridge for breakfast, but the grey gloop that arrived only had the hint of ever being acquainted with oatmeal, so I mixed the honey in the warm milk and drank that instead, grateful that I'd brought some bananas from home.
I had my last infusion of vancomycin from 730-1030, so I sat up on the bed and read the news and many other things on my iPad, a wonderful companion for a hospital stay. The oncology team came around 9am, and my oncologist told me the preliminary reports from pathology showed no cultures had been grown from my port. He said that means my infusaport can stay in, and I'll be able to have my next chemo on May 8th, as scheduled. I have to take augmenting duo (an antibiotic) twice a day for the next five days, then switch to flucloxcyllin. No more Clindamycin! He wants to give my liver a rest. I was to be allowed to leave after the formal results came back from pathology, which they estimated would be at 1pm.
In an example of how hospital discharges can be improved, I didn't escape until after 4, when the formal report finally arrived, despite repeated calls to pathology. I didn't mind, I managed to read most of an excellent Doctor Who book, Shada started by Douglas Adams and finished by Gareth Roberts (published 2011). It was a luxury to be able to start and finish a novel in a day, undisturbed by others. And I'm sure my bed was quickly taken by someone waiting in emergency.
So I'm home, feeling well but tired, and looking forward to spending the last week of the holidays with my beautiful boys, who were happily having nerf gun battles while I was away. I hope this is the last drama I have to go through. When the lump was detected on ultrasound, I kept telling myself it was probably a storm in a teacup, that 4/5 breast lumps are benign. I'm glad I've finally had one thing turn out to be the proverbial storm, my teacup has been waiting four months for its storm.
Now for sleep, hopefully without the guillotines and cries of terror that have been waking me the last few nights,
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.
