(School holidays, lovely weather, marred by sore tongue and increased awareness of GI tract.)
My tongue feels awful. It's sore and sensitive, a little like the feeling when you've eaten too many chips, only the whole tip and first third is in pain. There's a pain-free bit in the middle, but then it starts again at the back of my tongue, goes down my throat, through my gut, and ends up... Well, I won't give you too much information. It's enough to say I'm afraid of going to the loo.
I have had to start taking the Clindamycin as single capsules again, the chemo has obviously done its job and stripped my guts of the fast-growing cells, leaving me with a bundle of sensitive nerves. It's hard to know what to eat - smooth and bland things seem to work. I'm having vanilla frûche with my capsules just now, the cold is divine, but the acid stings my tongue, and I found myself sucking on the cold spoon for its magical soothing qualities. I have never received sensual solace from a spoon before!
It's easy to settle into a routine with chemo. After the first round, where fear of the unknown and a run of bad luck heightened every experience, we've almost habituated to it. The chemo nurse who removed my needle today said that patients assume that the clinic is only for giving chemo, when in reality it is there to help with managing the side effects as well.
The first few days of this round weren't too bad: I took all the antinausea drugs prophylactically, and it worked, to the point that I think we'd almost forgotten that I had chemo last Wednesday, until my tongue started to get sore last night. I've stocked up on a sodium bicarbonate mouthwash to cleanse after brushing, nystatin to prevent thrush, and an antiseptic mouthwash called Difflam that I haven't dared to try yet, they said it might sting. Ben ordered some emu oil capsules on the Internet after reading that they can be good for the gut during chemo - I took one tonight, but I'm not keen on eating emu oil, even in capsule form. They smell weird, and I am sick of taking pills.
In the scheme of things, I'm feeling okay, and a bit of a wuss writing about a sore tongue, given the far greater loss and suffering that has been happening in the world this past week, what with bombings in Boston, earthquakes in china, the gas explosion in Texas, and all the other bad news that I usually block out through being busy.
Chrissy Amphlett's death has been a sobering reminder that breast cancer can be fatal, and I'm aware of a whole range of thoughts that I haven't been allowing myself to think. Like how damned lucky it is that my tumour was caught before it spread, what might have happened if it hadn't been caught early, and a simmering annoyance that it wasn't detected last year. I'd be over my treatment by now, if it had been, but... It wasn't detected last year, it's happening this year, and I hope and pray that the treatment goes well so that I can live another fifty years in good health. I'm so sad for Chrissy's family, and for all those who have lost people to cancer. It's such a bitch of an illness, sneaking up and invading a body, disrupting the lives of all those involved, and still sometimes stealing life despite the most valiant fight. I think I'll pack all that away for after my treatment is over, I need to keep focussed on getting through each day, managing symptoms as they arise. I'd rather spend my energy on trying to stay well, enjoying my family, and looking forward to the future, rather than worrying.
I dreamt about Dad's mother, Jessie, last night. The dream gave me a sense of love and safety, and continuity with my family. I never knew her, she died of cancer in 1952, so it's strange that I dreamed about her. She had 14 children, 31 grandchildren, and reportedly told a cousin that she always wanted to have children in the house, she loved them so much. I wish I could have known her, she was deeply loved by my aunts and uncles. A wonderful thing about being back home is the sense of connectedness to family. When I see them, I get a sense of stillness and calm acceptance that is wonderful, even when tinged with teasing and stirring from the male members of the family. I had that sense of beneficence in my dream, I hope I experience it more often.
420am. Bugger. I'd forgotten about the bone pain. My thighs are aching so much, and my pelvis. I tried to get back to sleep for half and hour, but my amateur attempts at self-hypnosis didn't work. So I've taken an NSAID (advil, because paracetamol didn't work last cycle), and I'm sitting up to get started on my first dose of Clindamycin for the day (accompanied by some yoplait LeRice, just for something different). My elbows and shoulders are aching too. I hope the pain goes away soon, it's not much fun.
433am. I now have two young companions in my bed. Poor old Po, our 15yo blind, deaf, and cognitively compromised Tibetan spaniel was whining. Nathaniel woke Ben up (they all sleep in the same room while I'm having chemo), Po peed on Ben's arm, and Ben is now having to clean up a stinky doggy mess. It's hard not to laugh.
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.
