The main purpose of this blog post is to invite family or friends from interstate to come and stay with us for a few days, in exchange for company, conversation, driving a manual car, and helping with the cooking. You'd only have to pay your own airfares. We have enough beds for four extra people (one queen-size bed in the bedroom upstairs, one downstairs), and the upstairs room has its own bathroom. Despite all the dramas I've been through, I'm feeling remarkably well, and feel even better when I have people to talk to. So if you're interested in a short break in Launceston, email me and we can talk about dates.
I've been having a lovely week with an interstate visitor this week. Debbie Ling came over to stay on Monday, and will be leaving on Friday. Deb and I were housemates from 1990-95 in Barkly St, Carlton, where we talked for hours on the staircase the first time we met. We were up talking until 10 on Monday, had breakfast and did some shopping in town yesterday, and today we're home being domestic. Nathaniel is home too with a virus, he's reading at the moment, but I'm going to take him through Bill Handley's Teach your children multiplication in the hope that he will be able to multiply numbers in his head by the end of the day. Having him home means that Deb and I won't be able to have the open and frank wide-ranging philosophical conversations about life, the universe, and everything that we've been having for the past two days, but I'm hoping we'll be able to get two bookcases reorganised, and finally clear off the dining room table.
It's so good having Deb here, I hadn't fully appreciated how housebound or socially isolated I've become. Not being able to drive is an impediment, but my recent experience of pain and nausea have made me reluctant to journey out alone. As it was, I was utterly exhausted with walking a few blocks in Launceston yesterday, but I felt more able to do so with Debbie there for company. I'm so out of condition from my recent 3 weeks in hospital, my legs felt very weak and I had to sit down a couple of times. Despite getting so tired, I didn't sleep very well last night, my tummy was still hurting a little, and I couldn't get comfortable. I'm feeling sleepy and unwell this morning, wish I could crawl back into bed, but I want to get Nathaniel doing the multiplication work, and to tidy up, even if it's only a little bit. I'm also trying to process life without my work, I'm grieving for it a little, because I'm not sure that I will be able to return to the job I did before. Emotionally, I'll need a lot of therapy to be able to cope with hearing stories of other people's illnesses. Cognitively, I don't know if I have the concentration and endurance to analyse and interpret neuropsychological data, let alone to collect it. This would also affect my ability to supervise students, as it requires hearing patient stories and interpreting data. It's too early to worry about such things at the moment. I still have to recuperate from my recent surgery and get my strength back. I should be feeling much better in a year.
I learnt a valuable lesson this morning - never look back. I had a look at a couple of posts from early September last year, around the time of my diagnosis and surgery for the brain tumours. It made me feel quite distressed, seeing myself optimistically giving thanks that things had been caught before too much damage was done, that the tumours were where they were, that it wasn't far worse. I have a feeling that this is how I'm coping, by maintaining a sense of optimism, hope, and gratitude, and skating over the thin ice rather than stopping and seeing it splinter and crack beneath me. I could probably become overwhelmed if I were to look at the enormity of what has happened, and the possible ramifications, but if I keep on skating and trying to find positive things in the journey, it doesn't allow me to freeze in fear. Maybe my strategy is a sophisticated form of denial, but I don't think so. I know I'm metaphorically skating on thin ice, I know what is underneath, and I don't want to fall. I trust that I will get to solid ground at some stage, I just need to keep going. So I won't be looking at old blog posts again. I admire the fortitude of those who continue to read it. Just don't let it give you a false impression that I'm not doing well. I'm still enthusiastic about life, I'm not unwell or dying yet, and hopefully won't be for a very long time. We're all going to pass from this earthly realm at some stage, so we have to seize each day and stay in contact with our family and friends, and fearlessly embrace the life and opportunities that we are given.
I know, believe me, that it's very hard to visit someone affected by a serious illness, it brings us face to face with all our fears and memories related to illness, grief, suffering, loss and dying. But to avoid seeing people because of our fears is to deny both them, and ourselves, of the opportunity to share pleasant memories together, or even to share the simple companionship of sitting together in silence. Avoidance can also set us up for regrets. I didn't create enough memories of Dad's final months because I was too busy feeling grief-stricken at the thought of losing him. I'm glad I was able to gather the strength to see him just before he passed, but I still feel bad for all the chances I missed. The time for grieving is after they've gone. Getting consumed by grief beforehand is understandable, but not helpful. Life needs to be celebrated, particularly when we know how precious and transitory it is.
That doesn't sound particularly happy, I know, but it's 9 months since my GBMs were discovered, they haven't progressed, my bloods are stable, and I'm getting better each day. I'm still very much alive and eager to see people.
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.
