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.


Monday, 29 July 2013

11 down, 17 to go

I've completed 11 radiotherapy treatments today, so I'm more than one third of my way through being laid on a table and x-rayed and zapped each day. I'm starting to get so used to it, I've nearly dozed off the last two times, though that could be embarrassing: would I stay in my carefully-posed position, arms above head, hands grasping a T- bar, chin up almost as high as it will go? Even if I don't move, the position is perfect for snoring. That would make me feel at one with the elderly gents who come striding out of the treatment rooms, gowns hanging open to display wobbling abdomens, and disturbingly short shorts...

Today was a little frustrating. David woke me at 5am, as usual, and went downstairs to collect some souls to craft some armor to defeat the Eye of Cthulu on Terreria (his capacity to be absorbed in fantasy computer worlds and to diligently search, craft, research, and create things is impressive. I only hope he starts applying it to real-world projects soon). Nathaniel came to my room in a grumpy mood, and kept saying that he wanted to stay home. I managed to get him to go back to sleep, and I had a blissful sleep until about 730, when Nathaniel started coughing a nasty chesty cough, and I realised he probably needed to stay home. We dropped David off at school, and I rang the GP to get Nathaniel in in. They offered me 940 or 112; I took the earlier spot because I had RT at10, and was seeing my surgeon at 1130. They told me the GP is rarely late. Ben called me at 10 to see where I was (he was waiting to look after Nathaniel at the clinic). I was still waiting for the GP when Ben arrived 10 minutes later, so I went off to get zapped while Ben took Nathaniel to the doctor. It's a great advantage of living in Launceston, everything is so close together, and traffic and parking aren't problematic. The clinic were fine about me being late (RT only takes a few minutes per person, so they would have treated several people before they saw me), and Nathaniel was happy that the GP told him to take a few days off school. Not one, not a couple, but a few. Blast it! I want him to get better, but I value having time to myself. I start to get a little cranky by the end of the day if I don't get some time to settle in my own head - I took a lorazepam tonight because I was starting to feel so stressed about little boys who weren't going to bed!

The surgeon was happy with my progress. She said a little swelling of the mastectomy site during RT is normal, as there can be some inflammation. I have to see her again in November. Reconstruction will be no less than 12 months after RT finishes, so that the tissue can heal. I asked about recovery time after reconstruction. She said it requires one week in hospital, and about 6 weeks of recovery time, the first 3-4 weeks are quite uncomfortable due to pain from where the muscles are cut at the base of the rib cage to make the internal pockets to hold the implants. 

I'm still not sure about having a reconstruction, I wish I could just have the other breast off to even things up and remove a source of anxiety. At the moment I feel so unfit, I can't imagine ever feeling physically attractive again, but there's lots of exercise to be had in the coming months to improve my fitness, decrease my fatigue, and combat the ongoing post-chemo myalgia, which feels like a lactic acid buildup in my calves, thighs, biceps, and forearms. I also have hair to grow: I have a soft and fluffy cover on my head, which isn't very thick, and I have virtually no eyelashes or eyebrows. My eyebrows are so moth-eaten in appearance, I'm tempted to get them waxed off, so that they can grow back in a more consistent shape.. But then, they mightn't grow back at all. I've tried the eyebrow pencil tricks from the LGFB program, but it just rubs off. So I've decided it doesn't matter. I'm alive, and I'm going to eliminate cancer from my body. That's all that matters.

I'd better sleep now, and take advantage of the rain on the corrugated iron roof. Bliss