Thursday 30th January 2014.
one year ago I was preparing for my mastectomy on the 31st. I must have been getting the boys' things ready for school, but I really can't remember much about that time, only the fear that something might go wrong and I might never see my precious boys again. I have always had a tendency to be overly dramatic.
Today I'm lying on my bed, feeling nauseous but alert. David is playing Clash of Clans on the iPad beside me, and Nathaniel is playing elsewhere, keeping as far away from David as possible, for some uncertain reason. I hate it when they get upset with each other, though they've been remarkably good over theses holidays, which end next Monday.
I've been out of hospital since Saturday, after spending 3 weeks there - admitted after having a reaction to a blood transfusion. I hope I never have to return. I'm so tired of being in hospital, the uncomfortable beds, being woken during the night (the good nurses manage to come in and take obs and change drips without waking you), and, in my last room, the incessant, mind-numbing chatter from the visitors to the next bed. Made worse by their racist ignorance ("Melbourne isn't Aussie any more. You can't read the writing on the signs in the shops in Springvale, and when you go in, they look at you with slitty eyes. It's much better in Queensland, in the caravan park in Caboolture, at least they're still Aussie there." I tried not to listen, but some words are so vile the cut through Kevin McCloud's dulcet tones and burn themselves in your awareness. My blood pressure rises again just thinking about it. Maybe that's why I developed nausea and vomiting? My last couple of days were quite unpleasant because I had no appetite (it's hard to eat when you feel like chucking), and I tended to bring up whatever I ate. It may have been the Flagyl they'd put me on - an antibiotic that can cause nausea and vomiting, not that it has for me before. Things have settled since then, thankfully, and I've even felt hungry on a couple of occasions. I've decided that nausea and pain can both have significant effects on mood - I've spent a lot of time in the last few weeks sleeping to avoid the nausea, though I've also been tired, and need to have a nap again now, at 11 in the morning!
Friday 31 January, 909 pm
Ben is reading to the boys in their room next door, after they sat in bed with me watching 'Hoodwinked Too' on tv , a movie I haven't seen before.
It hasn't been the easiest day. We had haircuts scheduled for 945, but Nathaniel dug his heels in about leaving, and mum had an appointment at 10, so she couldn't hang around for us to get ready when she came to collect us. I called a taxi, but it didn't come in time, so we ended up rescheduling the hair until 315, and now David, Nathaniel and I have new haircuts (mine being a no.1 clipper all over). Being down in the town allowed us to meet Ben for dinner at a new Indian cafe called Cinnamon, at the Jimmy's complex, and I ate more than I have in ages - a masala dosa isn't a huge meal in itself, and I didn't eat much of the potato component (Nathaniel was a willing recipient, so much my father's grandson), but the coconut chutney, dosa, and dahl were great. I love going to new Indian restaurants, where you may have a chance of influencing the menu - they made the dosas from scratch for us (cheese ones for the kids), and they're open to the idea of pani puris, though maybe not kheer, which takes a long time to make.
I'm feeling achy tonight, probably from the GCSF injections that I have to have each day. At least they're having the desired effect on my blood counts, so I'm hoping to avoid any further admissions to hospital.
I had my repeat breast ultrasound and mammogram on Tuesday. I haven't heard back on the results yet, so we're assuming no news is good. I suppose if there was cancer in my remaining breast, I'd have it removed. I'm just not keen on going through chemo again, don't know if my bone marrow could cope with it. I'd have to adopt a strict anticancer diet, which I'm trying to anyway - it's just hard to find the motivation and energy to cook when feeling unwell and your blood pressure is low - I feel dizzy if I stand for too long (e.g., as long as it takes to stack the dishwasher, put away the dishes, or fry a couple of eggs).
I'm glad it's the weekend, but not glad that school goes back on Monday - I need to cover the boys books, label their new clothes, and come to terms with the fact that I've missed nearly 4 weeks of their holidays. They seem to have had a good time, with a bit too much playing on the iPads and computers, and not enough time swimming or playing with friends. I'll get through this, and there will be plenty of time for beach holidays and time with friends.
I'm starting to think that I might be okay to drive again soon. My scotoma isn't bothering me, and I'm feeling better as a passenger, but the rules say no driving for up to 6 months after brain surgery (taking me to march), and probably a similar time after a seizure (taking me to June). Launceston's small enough for taxis to be relatively affordable, but taxis aren't great for school drop-offs and pickups, and there's only so many times we can ask friends to help. Ben's going to try to manage it, going back to work afterwards. I think I might start to go mad from being alone. I'm going to embark on a fitness program (stairs, treadmill, light resistance work), which will hopefully lessen my fatigue and improve my concentration. I find it hard to remember appointments even when told them 3 or more times, and I rely on my diary to help me remember. I don't know when I'll be competent to return to work. Impairments in memory and concentration are not compatible with the kind of work I used to do, and I still get fatigued so easily. I'm going to try to stop sleeping so much during the day, and to use exercise and seeing people as a way to cope with this, rather than escaping through sleep.
It's freezing inside tonight. Ben and I have a silly dance where he comes home and turns the air conditioner on to 18 because it's hot outside and he's wearing a suit. I turn it off because I like being warm (but not too hot) in summer. In winter, he comes home and turns the heater up from 18 to 22 because it's cold outside and he wants to wear shorts and a singlet in the house. Such a silly routine, at least we don't waste energy arguing about it - we just keep turning the A/C on or off, depending on our preferences.
I'm still spending time meditating each day, and am finding that I feel calmer and better able to cope as a result. I can't, however, cope with other people being cranky, I feel my stress levels rising when they are, so I've spent a lot of time in the holidays trying to teach the boys not to wind each other up or call each other names. They're getting better at it, thankfully. I can't bear to hear Ben or the boys arguing with each other, I need them to be happy and having fun, not calling each other names or getting cross. Ben says I have a pathological need to avoid conflict - he may be right, but I believe I have a strong and healthy need to avoid stress at the moment. It's been a difficult year. One year since I had the mastectomy, 4 months since the first craniotomy, and two years in February since Dad passed away. It all seems so strange and distant, I'm feeling detached from everything that's happened. Not quite sure what to do next, other than get fit and healthy again. And turn off the air conditioner before I go to sleep.
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.
