I had a CT brain scan last week, in order to check for postoperative air in my head,which might prevent me from flying to Melbourne to see the neuro-oncologist. The CT scanner isn't as noisy and doesn't vibrate as much as the MRI machine ( which makes a noise like a slow jackhammer or industrial pounder, and shakes around as much as a truck on a heavily corrugated gravel road). The head cushion on the MRI is very comfortable foam, but the CT headrest felt uncomfortable, as if there was a metal band across the middle of it. I asked the radiographer about this, and she said there are actually some metal clips in my skull, probably a remnant from my left occipital craniotomy in 2013. If the surgeon used clips or staples to secure the skull sections after surgery in 2013, I suspect that explains why my head had been feeling a little lumpy and tender to touch before the last surgery.
Good news from the CT scan is that there was no air in the skull, so I should be able to fly. And despite finding it hard to concentrate over the last month, I have evidence that I'm not an airhead (a very bad joke, but it helps to laugh about something)
I'm less happy about the report mentioning residual tumour in my right parietal and temporal lobes, and associated oedema. Our GP is going to contact the neurosurgeon tomorrow, and I will too. My initial reaction to reading the CT report was an angry expletive, and it's been difficult to keep myself from worrying about it over the weekend. I was told the MRI on the day after surgery showed no residual tumour, so the enhancement on this more recent CT could be residual tumour, or something else. Oedema might be there because I've been weaned off the steroids (it's not good to be on dexamethasone for too long, look it up). I'm worried that the "residual tumour" might be tumour regrowth, but I'll file that possibility in a box until I've had an MRI which will give a better idea. (more angry expletives arising from my mind)
The boys go back to school tomorrow, David is starting high school, so today was spent labeling new clothes and school books. I slept for a few hours this afternoon, after helping Ben and David put some slow dripping irrigation pipe around the date palms in the front yard. The heat and bending over made me feel quite unwell, so it was good to sleep. We had hard-boiled eggs for lunch, and Ben and the boys kept themselves busy while I slept. I kept getting woken this morning during dreams involving blueberries covered in chocolate. David woke me this afternoon asking about dinner, and was perplexed when I told him I'd fried some potatoes and covered them in chocolate. I was sure that I had, and he was sure that I'd been sleeping. I hope that he'll learn the folly of waking me when I'm sleeping deeply- it makes me grumpy ( though this dream was funny). We had sausages and salad for dinner, followed by mango, kiwi fruit, and passionfruit. I was cooking better things last week, but the new supermarket we visited last weekend sold us meat that was marked "best before 26/1/15" and that was the date I bought it. I won't be going back there again, it's a darned nuisance and waste to find expired meat when you're about to cook it.
It's generally been a good weekend, but I'm wondering about the effects of my right temporal lobe oedema on my mood, both before and after the surgery. Before the surgery, I had a handful of very disturbing episodes where I felt that life wasn't worth living any more (even though I do not want to die and I want to live many more years from now), and when I was troubled by the desire to cut off my left hand- something so bizarre I just don't and didn't understand it. I was upset about something at the time, but I had no desire to carry through with the action, or to talk about it. I wonder if it was some strange activation of my limbic system, some misfiring of my hippocampal-amygdaloid complex in response to emotional triggers, and in the context of the tumour and related oedema. I'm relieved to report that it's only happened a couple of times, once before surgery, once after surgery, and that it hasn't happened since, and that I have no plans or desire to hurt myself. It has made me wary of getting overwhelmed or upset, as it's disturbing to find such impulses arising in response to emotionally laden situations.
I used to work in an epilepsy program in Melbourne, so I'll ask one of my old colleagues about my experiences. I know that Keppra, the anticonvulsant that I'm taking, can cause mood disturbance or lability, but I don't think my experience fits with what I remember about Keppra-related symptoms. I'm glad to have a bottle of clonazepam around to use if I start to feel overwrought, even though I'd prefer to get off the emotional roller coaster myself, rather than resorting to medications. I'm quite fond of my left hand, I have no idea why I would want to hurt it. I understand now why it's so difficult for people to report thoughts of self-harm to others, it feels crazy, but I know that I'm not crazy. It was just a momentary and disturbing impulse to hurt myself that I wanted to go away, and which I dealt with by removing myself from the situation, and doing something pleasant and constructive like gardening or tidying the house (pleasant because of the sense of accomplishment and getting a tidy house or garden - what an exciting life I lead!).
Tomorrow, the plan is to take the boys to school with Ben for their first day, meet Nathaniel's year 4 teacher, maybe have coffee with one of the mums, do some walking, and come home to call the neurosurgeon about the CT scan and hopefully schedule another MRI. I'm hoping the CT scan is nothing to worry about, and that there's no new surgery on the radar. At least, if there is, it doesn't sound like the recurrence would be inoperable. There's always radiotherapy if it was...
There's much that I want to do in the next 43 years until I reach 100, including lots of travel, and spending time with friends and family around Australia and overseas. I refuse to let any form of cancer get the better of me, and I'm confident that I'll be able to regain my fitness and energy in the next few weeks, so that I'll be able to contribute meaningfully to society and my loved ones in some way.
I've discovered that i feel good when I've had deep sleep, exercise, interacted with people outside the family, or achieved things around the house, so I'm going to start scheduling and logging my activities to make sure I do these things, and to keep track of my progress.
Wishing you all a happy February, and a stress-free return to school/work/uni, or whatever it is you do in February.
Despite the ups and downs, I'm feeling well and getting by okay. Some people seem to have the impression that I'm very unwell, but I'm not. I've experienced a couple of things that have made me unwell, but I'm doing fine at the moment, and people always comment on how well I'm looking.
Remember this with anyone you know who may have been affected by health problems of their own.
We need to give each one of them a chance to say hello and to interact with us, and not assume that they're very unwell even if they have a particular illness. People have an amazing capacity to thrive and enjoy life, or at least get by, despite serious illnesses or disability, and we need to see or talk to them and interact with them to give them the opportunity to enjoy the important energy generated by contact with others.
Sending positive energy and good wishes to you and your loved ones.
