I came home after lunch at the hospital today, and had a long nap on the couch in the warm winter sun. It was wonderful.
The pain is easing up, I have a choice of di-gesic, panadol, or Endone for pain relief, so slow-release oxycontin, though I think it made me dopey after my mastectomy last year. The Di-gesic seems to be working, so I'll stick to that. I probably should keep a chart so I can know when I've taken them, it's hard to remember, especially overnight. I asked for some this morning, and was told I'd just had them. It was 530, and I'd had them at 145. I had to wait 15 minutes before I could have some more.
The food in the private hospital was good. I enjoyed the flavour and texture, and found that my appetite had come back. I still don't like very strongly flavoured food, and I felt a bit nauseous after dinner tonight, but I didn't vomit, which was reassuring. I have a long, neat scar that starts just above my belly button and travels down to the pubic bone. It's healed very well, and he used invisible, dissolvable stitches, so I just need to keep my belly button clean while it heals. I still find myself walking with a hand supporting each side of my tummy, but sitting up and standing is becoming less painful each day.
It was so lovely to see Ben and the boys at home tonight. Nathaniel's piano teacher had called me earlier to discuss the timing of his lessons. He always goes with her and enjoys it, but he worries that he's missing out on class time. She checks with his teacher, who says it's okay, and she told me it's fine if he doesn't practice between lessons at this stage, he's doing so well when she does see him. Same for doing music homework at the moment. He learnt notation and the treble clef from his recorder last year, and picks it up quickly. He's reading the notes on the staves, and was trusting his fingers to play the right notes while he was reading the music the other day- an ability that can take some years to master. She thinks he feels a certain pressure to play piano because it's my instrument, but says he has the hands for cello. So my plan is to spend some time each weekend messing around on the piano with him, and maybe getting myself a recorder so that we can play together. I've shown him a couple of youtube videos of two cellos, a European duo who play modern rock pieces on cello, and he like the sound. He's always loved music, and used to bring me musical toys to listen to even when he was a baby, nodding his head in time to the music and looking intensely involved with it. I hope I can help cultivate his interest into something he can use, he's a passionate little soul who would benefit a lot from being able to get absorbed in music.
We all sat together watching the Big Bang theory this evening, and I treasured every moment of being with my family, they boys leaning up against me, Ben relaxing on the couch. It was a perfect evening, even with a few petty grievances. I've resolved to appreciate the perfection in each moment from now on. By being totally present in the moment, time passes more slowly, and I can appreciate every instant, even the little things that we get irked about. Making time slow down in this way stops me from worrying about the future, and regretting things from the past. It allows me to make the most of each instant- it felt a little like the scene from the matrix, where bullets passed by as bubbles through water.
Everyone's asleep now, time for me to join them. I want to enjoy every moment of tomorrow as well.
Thanks for reading and staying with me.
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.
