Wednesday evening (4/6/15) and I'm sitting up in bed, feeling thankful for my many blessings, and looking forward to many blessings to come.
I'm quite tired after a disturbed night's sleep with a 10 year-old who claims to feel unwell, and who keeps ending up in my bed in the wee hours of the morning, though I don't wake up until his big brother is thumping around with his size 11 feet. Nathaniel has missed a few days of school in the last couple of weeks with a sore throat and tummy, and says he feels unwell. He's on an antibiotic for his tummy after a stool sample was returned as showing a parasitic infection of some sort (not worms, some sort of parasitic cellular organism that I hadn't heard of before. We wonder if it had come from contact with my mother's small and very affectionate (licky) dog, who lives in a small rural town with cows and other livestock around. It breaks my heart to have Nathaniel sobbing in my arms in the morning that he doesn't want to go to school because he's feeling unwell, but I'm worried that missing too much school will be bad for him. His reports have been satisfactory up to now, but he's in year 4, and it's not good for him to be missing out on foundational learning, especially things like maths. I'd hate for him to have to repeat a year. He's going to be 18 when he enters year 12 on the current trajectory, which will make him one of the oldest kids in the year, but that is because he was born early in November, and wasn't ready to enter Grade 1 when he was eligible based on his age. We figured it was better for him to enter year 1 when he was ready for it, rather than struggle with the literacy and numeracy aspects that he hadn't been picking up in Prep (thanks to the school preferring an unstructured Emilio Reggiano approach over structured learning that had worked well for his brother in the school in Melbourne).
Sorry, I know some of you are here to read about my health experiences, but remember, this blog was started up to keep my family and friends informed about my health status. Tonight, I need to write about some of the broader picture things that aren't specific to a person who's had cancer.
I'm feeling guilty about not being able to be the kind of mother I wanted to be (e.g., able to drive and be involved with my childrens' education), and Nathaniel's ongoing issues with separation anxiety trigger feelings of guilt in myself for keeping him in 3-year-old kindergarten when the teachers used to have to hold him while I departed, and he used to cry and scream his little heart out. I could hear him as I walked to the car park. That went on for 2 years, and there were a few episodes at the new school when we moved here to Launceston. I'd hoped that he'd adapt well to being in "prep" rather than "kinder", and while it worked for a while, he still wanted to be with me, even though I was working full-time. He's had lots of issues with wanting to stay home over the last couple of years since I was diagnosed with breast cancer, and then the multifocal and recurrent brain tumours, and has missed a lot of school as a result. I'm worried that he might need to repeat a year of primary school with the amount of school he's been missing, so I'm trying to work out how to improve his school attendance, but it's so hard. I can tell he's worried and anxious, and I can't get angry with him about it. As I said, it breaks my heart, and I feel like crying when he hugs me in tears.
So, enough of that. I'm feeling like a failure as a mother, though I know that's irrational and I'm being too hard on myself, but I don't know what to do.
I had my 5th Avastin treatment at the hospital on Monday morning, and everything went well, so there's just one more to go in a couple of weeks time. It was great to catch up with a few familiar people at the hospital during and after my treatment, and I had another good catch up with a few other people at the hospital the next day. Before I had cancer, Ben sometimes used to say that talking to people was "like oxygen" for me, and I've realised he was correct. Talking to other people makes me feel energised and alive, and it's very important that I have regular face-to-face contact with others. These last few weeks at home, when the weather has been bad, and I've been feeling low in energy, have been bad for my spirits. There have been days when I've stayed in bed for hours, trying to use sleep to help me hide from my sad feelings, or the sound of the wind and rain outside. I'm determined to set up some regular activities that involve social contact with others, even if it's just familiar people at the pharmacy or other shops and cafes in town, because it helps me feel much more positive about things in general. Being stuck in the house without any social contact is not good for my mood. I've also had the realisation that I tend to interpret other people (i.e. family) getting irritated or frustrated with me as a sign that they dislike/hate/despise me. Again, not rational. But my feelings are rather fragile at the moment, and I just want people in my family to love and cherish me, and to show it through their words and deeds.
David's been getting irritated with me for asking the same question a couple of times - apparently I've been doing it "a lot", but I don't remember. I tell him that my memory isn't as good as it was before, and that if I repeat a question, it's either because I didn't hear him answer it in the first place, or because I've forgotten the answer. I'm hoping that this strategy of educating him that my memory isn't impeccable will work soon, because I'm starting to find it hard to deal with his adolescent grunts of irritation about having already told me the answer to a question (as many as "100 times"), and it's beginning to upset me. I'm not deliberately trying to annoy or frustrate him, or to forget things on purpose. I'm just finding it harder to cope with mulitasking and background noise, and sometimes I simply cannot remember things that I've been told before.
I had no inkling of what it was like to have a memory problem when I was a neuropsychologist, but it's really hard to deal with. I'm doing the best I can to use a variety of memory aids, like a paper diary and notes, but it's surprisingly difficult just to function within a family now that I'm forgetting things that need to be done, and when we don't yet have a family memory centre set up.
I had a lovely visit from a cousin today, who popped in to see me on her way up from Hobart. She's full of energy and very dynamic, and offered to help me sort out some of the boxes in our walk-in robe. I found the activity exhausting, and would have taken a nap, but for her strict instructions not to, because she was concerned it would effect my sleep tonight. I didn't know how to tell her that I get tired very easily these days, and the reason I haven't dealt with all of the clutter in this place is because I need the energy and motivation to do it, and I prefer to do it in the company of others. I feel overwhelmed by the amount of things I need to do, and I'm prioritising them, so that the important things get put first. A few months ago, I decided to make the kids put their own clothes away so that they'd know where to find them in the morning, but that hasn't worked, well, not yet, anyway.
Darn it, my cheekbones are aching under my eyes from a lingering sinus infection, or the cold air in our bedroom, and I'm finding it hard to stay awake. Everyone else in the house is slumbering soundly, and I will join them soon. There's plenty more I'd like to do, but I need to sleep tonight, and there is much time for me to do many things in the future. I can remind myself now that just because someone is irritated or frustrated with me, it doesn't mean they hate me. I don't know where that neurosis came from. I know there are many people out there who are very fond of me. Though I probably don't irritate them as much as the ones I'm in daily contact with.
Damn it. This is part of the psychological aspect of having had a couple of forms of cancer. It probably puts most people, and their families, under stress. I'm doing remarkably well, despite everything I've been through, and I'm hoping to get through many more decades of good health and company.
Goodnight.
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.
