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.


Sunday, 24 February 2013

Sleepless ramblings

It was hot and humid yesterday, and it's still 21 degrees at 130 am, with very little breeze to cool the air. I think I woke because it's hot. I've been to the loo, had some Endone and panadeine forte (my favorite pain combo), played a few levels of Gardens of Time (my current game addiction), and I don't feel very sleepy, so here I am, blogging in the wee hours.

We had a pretty good weekend. Buying a new fridge last week has made my kitchen look and feel complete. It's also led to a rearrangement of things in the laundry (to accommodate our old fridge), and the energy to move the TV and sofa in the family area (off the kitchen), so I'm feeling happy with part of the house for the first time in ages. Clearing my paperwork off the dining table also helped, even though it's now in disorganized stacks in the sunroom. I have a theory that our house would be tidier if we had people come to visit at least twice a week. It's amazing how quickly we can tidy things up if we have a deadline (even if things just get stacked away somewhere else). The feeling of neatness is very calming, and serves as constructive procrastination - the feeling that you're doing something useful, even if it involves avoiding the thing you really should be doing (like last year's tax, for example).





Writing about domestic bliss is another form of procrastination. I'm sure you aren't here to read about the secret life of our household ;) So, what am I avoiding?

Hmmmmm...

My chemo starts on Tuesday. I will be seeing my surgeon again In the morning, then the physio in the afternoon. Ben went down to Hobart last night for an all-day meeting that will include dinner tonight. He's planning to drive back early tomorrow morning so that he can be with me for the chemo. I could probably manage with Mum's company, but it would be good to have him there for another set of ears to take in the information about chemotherapy, side effects, precautions, and how the next 24 weeks of my life might be completely stuffed up by this bloody cancer.

I'm not looking forward to the next six months very much at all - I hate fatigue, I hate being stuck inside, I hate being told by every doctor that I can't do the gardening because I can't afford to get a scratch, "as it might get infected." I hate being told I have to wrap myself in cotton wool, avoiding people with infections, avoiding too much sun... I know it's all for a good cause, but it really irks me. There is so much I want to do, and I'm finding it hard to do very much at all. I found an article suggesting that chemo-brain may start even before chemo, and it rings true to me. The stress of being diagnosed, the anxiety about test results, the waiting, the fatigue, dealing with the anxiety of others around me... It all adds up to diminished attentional resources and energy for tasks. You can read the article here:

http://breastcancer.about.com/b/2012/12/19/chemobrain-may-start-before-chemo.htm

My seroma is still doing its thing: filling up, getting drained (6 times and nearly 2 liters of fluid so far), filling up again. It's not as painful as before, but the skin under my scar is thickening up, and looked pretty weird tonight. I asked Dr Google about skin thickening after mastectomy, and he told me it can be a sign of tumour recurrence, but usually months or years after surgery. I should have added "and seroma" to the search terms, because then it would have told me that skin thickening can be a response to the seroma. I'm so glad I have a surgeon and an oncologist who will answer my neurotic text messages on a Sunday evening. Much better than Dr Google (who, I suspect, gained his qualifications online ;)

Overall, however, I think I'm doing okay. I still enjoy company, food, and wine. I feel exhilarated walking around the town with family or friends, I look forward to the future, even to every day of treatment, when I see it as another day closer to having killed any cancer cells that weren't residing in my tumour. I love my family and friends very much, and I feel a greater closeness to and appreciation for every living thing, as every one has their own individual battles to fight. I'm still enjoying the frivolous, and I can't wait for my new hats to arrive. I'm being gentle on myself for my lack of energy, and encouraging myself to set boundaries on tasks within the house and family, even though there's some flack because I'd previously done a lot of things for the kids because it was easier to do them myself and get it right, or quicker to do it myself rather than deal with their petulant arguing. It will be good for them to take more responsibility for their share of work around the house, and we're seeing improvements already.

I'm sad that Dad's younger brother Brian passed away yesterday after many years of back pain, pancreatitis, heart problems, and finally dialysis. He had never complained, always kept his calm sense of humor, and had a wonderful head of soft, fluffy, dark hair even though he was about 80. He spent the last 6 weeks of his life in hospital with an infection that wouldn't go away. He and aunty Lona decided to stop dialysis and commence palliative care, he'd simply had enough. He was a wonderful man, and I want to go to his funeral, even if I'm not supposed to hug anyone for fear of infection. I want to hug Aunty Lona, my cake-decorating guru, I want to see the extended family, and to plan a celebration for later in the year when my treatment is over. I'm sick of seeing them mostly at funerals. It's a part of getting older that really sucks.

There's still no breeze, but I'm starting to feel tired again. I hope I go to sleep quickly, I don't want to cry for all the things I fear, for all the loved ones who have gone. I want to rejoice for the gift and wonder of being alive, for the miracle of love (thanks Annie Lennox for giving me a song to focus on).

Wishing you all peace, love, and joy.






Posted by at