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.


Wednesday, 10 April 2013

FEC cycle 2, day 15

I love April!
The weather is sublime - warm days, cool nights - and the slowly changing foliage is beautiful. The attached photo is of cotoneaster berries on one of our evening walks - so red and luscious, great food for native birds - pity it's an invasive weed. The other photo is of a mushroom that forced its way through some year-old bitumen in our street. Amazing to see the power of plants. Bitumen isn't as hard as concrete, but you don't think of mushrooms as something strong enough to lift and break bitumen.

I am feeling really good this week. The G-CSF shot caused bone pain briefly last week (my whole pelvis ached, a little like it did 11 years ago when I was heavily pregnant with David, only worse), but it seems to have looked after my white blood cells. My neutrophils were down to 1.25 last week, but I'm feeling well, and there's been no sign of a fever. (Touch wood!)

I was bothered by fatigue in the last week, and the accompanying irritability (I just need to lie down and be left alone - Kevin McCloud's voice on Grand Designs is so soporific! I feel relaxed just thinking about his mellifluous tones...), but now I'm feeling well, and it's so good to feel well again after feeling unwell. I feel almost euphoric (and no opiates on board to take the blame!).

I think my euphoria is because the chemo made me feel so unwell, I started to think it was the new normal. So it's utterly brilliant to feel well, to realise that the chemo-malaise is only transitory, and that I will hopefully have many more years of feeling well ahead of me, once I get through the chemo.

There are lots of other things I'm grateful for:
- the physio doesn't need to see me for a month - my cording (aka axillary web syndrome) seems to have gone away
- I don't have lymphedema
- my seroma has gone away
- the prophylactic antibiotics seem to have kept my cellulitis under control
- I'm now able to take all three clyndamycin tablets at the same time, so it doesn't take 1.5 hours to complete one dose. I'm taking them at 530, 1130, 530, and 1030 each day
- daylight savings has ended, and I'm getting 6 hours sleep each night, instead of 2 to 4
- being bald isn't that bad, apart from the cold
- people say I have a beautifully-shaped head, and my eyes (previously squinty-looking) seem bigger without hair (DK why)
- I enjoy being flat-chested, even if unilaterally so. I am eager to get rid of the other breast, and I'm not sure that I want a reconstruction. Boobs are over-rated
- my family and friends are being wonderful and supportive
- I'm enjoying being a stay-at-home mum - far less stressed when taking the boys to school, when I don't have work to look forward to
- it's just started raining (I love the sound of rain on a cast-iron roof)
- I'm feeling okay to be driving at the moment
- it is indescribably good to be living in my home town, close to family and friends
- I have nothing to complain about, compared to the children and young people with disabilities who I seem to keep seeing around. I am humbled by their persistence.
- I have wonderful people looking after me, and lots of people praying for me in their own religious or non-religious ways
- Life is precious, and I've been given a gift, being diagnosed before the cancer spread.
- our little dog, Po-Po (named Patrul after the vagabond Tibetan saint) is turning 15 tomorrow, and is comfortable one year after he lost his hair due to cutaneous lymphoma. He may be deaf, blind, toileting inside, and only able to walk in circles, but he loves his food, is not in pain, and loves being patted. We didn't think he'd live this long
- my friend down the road has a cocker spaniel puppy who reminds me of our dear dog Cindy (1981-1995), it reminds me of all the love and wonderful times growing up, and I just want to kidnap the dear little thing whenever I pat her.
- we have wonderful neighbours, who I need to visit more often.
- I now own a beautiful cherry-red cashmere scarf, after a lifetime of avoiding red clothes (they made me feel agitated, I preferred calming blues, whites, greys, purple and black). I feel like I need the energy the colour gives me. Weird, eh?

They say it's good to write down three things that you're grateful for at the end of each day. I'm feeling content and happy after writing that list - I'm sure there are more things I can add, but I don't want to bore you...And I'm trying to stay relevant

I've been busy talking to builders and landscapers this week (need to have a project, or two, to keep me distracted - renovations won't start until after treatment is over), and I've started practicing Beethoven's Sonata in C minor ('Pathetique') and listening to his symphonies in bed each night. So I have Beethoven in my dreams and in my mind as I wake. I'm also getting sick of TV (so much rubbish!), so I'm reading and listening to classical music, and I think I might start painting soon...though I also want to bake lots of wonderful food for my family and friends...I just have to be careful not to overdo it. Despite what sounds like slightly manic energy above, I still need to rest on the couch for a few hours each day, and sometimes sleep. It's just so good to be feeling normal, even if temporarily so.

Seven days left until the last dose of FEC, I plan to make the most of it! (imagine a granny trying to speed with a four-point walking frame (might need to watch 'The Producers' tomorrow;))

PS - I've disabled the comments option on this blog, as it seemed to be crashing for a number of people (myself included, after one particularly eloquent response). Feel free to email me if you'd like to
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