It was a superbly sunny day today: cold and crisp in the morning, but the sun was so warm, it's lovely to be out walking in the mornings. I didn't nap at all today - I reclined on the sofa and had a long talk to my old housemate, Debbie, for a couple of hours after lunch. We never run out of things to talk about, just like the first time we met in our house in Barkly St, Carlton, where I sat on the stairs and she sat on the floor and we talked for several hours. It's so good to have friends like that, I love to learn things from people who read widely and intensely like Deb does, she's a remarkable woman.
I slept badly last night, thanks to taking too much prune juice in the evening to overcome what Nathaniel once described as "spiky poo". Paradoxically, I woke up feeling refreshed and full of energy, and managed to get through the day without feeling too tired.
I had "overnight oats" with berries at Inside Cafe in Paterson St (there was a fruit compote that was too sweet to eat), and was disturbed by reading the story of the barbaric murder of the American journalist by Islamic State. It's such an atrocity, I can't let the kids watch the news at the moment with all the terrible things that are happening in the world. There's evidence that children get vicariously traumatised by watching news footage of tragic events, and I know that I do too. My dreams are far more serene when my mind isn't polluted with images of violence, mayhem, and tragedy. I pray for world peace each night. Sadly, some people don't share the desire for peace.
I had a haircut in St John St at 9am, then walked all the way up to the hospital, staying on the sunny side of the street. It was a good walk with a slight uphill gradient, and I arrived at my friend Emma's office only slightly out of breath and needing water. Emma has inherited my old work laptop, and I found several of my old files backed up on it. I saved them to a memory stick, and backed it up to my laptop at home. Having those files, along with the ones I'd saved to dropbox, and to our home computer, means that I should have nearly all of the files that I lost with the missing USB sticks in the May holidays. I'd still rather have the missing files, but it seems they're irretrievably lost. The resort where we stayed have not gotten back to me despite three phone calls, the hire care company has nothing matching the description I gave in their lost property, and they're not at my cousin's place. Serves me right for not backing them up somewhere else.
I had to go to the Holman Clinic to get my infusaport flushed at 11. They didn't have any spare chairs in the chemo clinic, so they told me to lie on the bed in one of the rooms to the side. I looked at the bed and felt very strongly opposed to even sitting on it. I've had enough of hospital beds, and I hope I never need one again. So I put my things on the bed and sat in the chair, and Bec, the lovely nurse (they're all lovely down there), got the needle in first try and flushed my port. I need to do it again in 6 to 8 weeks. Hooray!
Sue, the breast cancer nurse, was looking for me (she must check the appointments for any of her patients), so it was lovely to catch up with her. She asked why I hadn't had the second mastectomy earlier this month. I explained that we'd been advised to have another breast MRI first, to see if there was any change. Even though there was a little more calcification on my January mammogram, the ultrasound was normal, and the MRI didn't show anything. So I'm scheduled to have the MRI on October 3rd at the Royal Hobart Hospital. I hope there's nothing to worry about. My risk of getting a recurrence of breast cancer was only supposed to be 2.5% after I completed chemo and radiation.
I went to see the radiation team after saying hi to all the people in chemo. It's nice to visit them, especially when I'm feeling so good. One of the radiation girls said she'd been thinking of me, and they were glad to see I was doing so well.
Walking out through the radiation waiting room was surprisingly upsetting. People who are undergoing radiation have usually either completed their chemo, are too sick to get chemo, or are having it concurrently. When I used to go there, I used to keep to myself and the jigsaw puzzle, and I didn't interact with the other patients. Seeing them all there today, looking tired, stressed and with grey complexions, was very distressing. It brought it all back to me, and made me realise what an ordeal it was to go through all that chemo and radiotherapy. It was a traumatic experience, and I just wanted to escape as quickly as I could. I bumped into Sue on the way out, and told her what I was experiencing, and she wasn't surprised. She said it's a common reaction for people who have been through treatment. It was reassuring to know that I'm not alone. But it makes me more determined to get psychological help to deal with what I've been through. At the time, I was just in survival mode, taking one hour, one day, one week at a time, and it wasn't too bad. But seeing other people going through similar treatments is just too much. At the moment, I don't know if I'll ever be able to go back to clinical work. Seeing people who are ill is just too real, too upsetting. I certainly wouldn't cope well with a cancer support group.
It's all rather paradoxical - I can write candidly here, and talk to people about my experiences, but I can't bear the thought of seeing other people who have suffered, or hearing their stories. I think I might be afraid of having a traumatic reaction, like I did today. I've been able to get through the past 19 months without being too traumatised, because I was always staying in the present. But if I encounter something that makes me look back, I'm confronted with the true horror of what I went through. As a result, I don't know that I'll be able to turn this blog into a book - I don't want to write a retrospective account of what happened, but maybe I could collate some of these posts into a book - or maybe I should just make this blog open to the public. I don't want to spend time writing something new at present, I want to have more days like today, when I felt full of energy and enthusiasm for life. It was incredible to feel so good after feeling unwell for so long.
The only problem with having more energy is that I get more irritable and cranky than I used to. I hate being irritable, and I hate finding myself getting annoyed by little things. I liked it better when I was so tired that I didn't have the energy to get upset by things. I thought that I'd achieved a zen-like contentment with the world, but it was obviously related to my energy levels, rather than a rapid attainment of self-mastery. What a pity. I'll have to achieve self-mastery the traditional way.
Must sleep now, perchance to dream
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.
