Easter Monday.
We've just returned home from an Easter long weekend in Hobart. It's the first time I ever remember travelling the 250km journey between Hobart and Launceston in the dark (apart from walking about 50km of the distance between Ross and Launceston on our year 12 walkathon overnight in 1985: a school tradition initiated by JFK's statement that a man should be able to walk 50 miles (80 km) in 24 hours). Travelling that road at night wasn't enjoyable either time. The road is having a lot of work done and the lanes are poorly visible in the dark, especially with the light rain that fell most of the way home. There was a section closer to Launceston where the reflective markers they call 'cats eyes" are red on the left, and orange or white in the centre line, which made it easier to see where we were supposed to be. I didn't realise how much glare was reflected back by the "keep left" and other road signs in the night, having done most of my after-dark driving in well-lit suburban Melbourne before we moved back here 5 years ago. My eyes are much more sensitive to bright lights or glare, and my ears to loud noises, after the two recent surgeries. I felt sorry for the driver of the Cadbury's chocolate milk truck who we finally passed before we reached Launceston. I can see why there are so many accidents on country roads after dark, especially when the lanes aren't clearly marked or are disrupted by road works. I've told Ben I never want to take that trip after sunset again. It's a pleasant drive during the dawn or during the day, but it was very unpleasant in the dark. I couldn't make myself sleep in the car, though I was tired enough to do it after we left Hobart today. It was a pleasant weekend down there, staying at Ben's friend's flat near Blackman's Bay. We managed to walk along the beach each day, and visited two of my cousins and two of Ben's work friends between Sunday and today. The boys had fun getting to know some pets - one cat, 4 dogs, and a chicken - and enjoyed playing Uno Stacko with their 3 female cousins, but it was a happy contrast from our awful trip down there on Easter Saturday.
We'd had an enjoyable time at lunch at Mum's on Good Friday, but I slept poorly that night and "dared" to sleep in until 10am on Saturday when we planned to travel to Hobart. I was relaxed about our departure time because there was no need to get there at any certain time. I packed toiletries for the boys and myself in the morning, but when I went to pack my own bag, I found it full of dharma books after we'd moved furniture in our room the day before. I had to find somewhere to put the books because you can't leave them on the floor. I also had to pack my own bag, which only took a few minutes because I learnt to pack quickly in my 4 years at boarding school, where I went home most weekends. Even though Ben asked the boys to help pack the car and gave them things to take to it, they sat with arms folded in the back of the car accusing me of making everybody late. My father used to display similar impatience to get moving throughout his life. I wonder if it's a male trait?
We didn't know until we arrived in Hobart that they'd left their clothes in the suitcase in their bedroom before we left. which resulted in an unplanned trip to Kmart to get some spare clothes and toiletries for them on Saturday evening. (not a bad thing, for the crisp white t-shirts and discovering the lunar eclipse on the way home). The kids were also cross that their bathers had been left behind, but the weather wasn't warm enough for swimming in Hobart over the weekend. It's good that they wanted to swim at the beach, but they're only kids, and don't realise how their sullen attitude affects their mother. (it makes me utterly miserable, after all I've been through. It's hard to muster the energy to deal with what is probably normal childhood behaviour)
I found myself wondering if life was worth living in our horrible day as a family during the journey to Hobart on Saturday. I couldn't cope with my children and husband resenting my need for sleep (I do not want to sleep in regularly, I do not enjoy sleeping past 9am, but it's something my body seems to need while I recover from surgery). I hated having David being sullen and resentful towards me for "making them late", and I hated the signs that Nathaniel might join his brother in adolescent angst in the near future. I understand that adolescence can be a difficult time for boys as well as girls, but I've been trying so hard to deal with having a potentially fatal form of brain cancer, and not talking to them about it in too much detail, it was very hard to deal with all the blame and resentment I was getting on Saturday. I tried very hard to stay calm and to keep my mouth shut, because my attempts to talk to them about how we can get on better seem to be perceived as some sort of nagging. Ironically, I've frequently told them that "nagging" is the way people justify ignoring things they've been told more than once before. It's possible or likely that their angst reflects their anxiety about my health status, and I'm beginning to wonder if it would help for them to see someone, but I don't want to do any harm to them by sending them to someone who turns out to be inappropriate for what they need. I'll have to find out what's available and suitable.
Luckily, the time we spent with family and friends in Hobart the next day reaffirmed for me the benefits of social interactions, and I had a fantastic conversation with the wife of Ben's friend about all the dogs we've had, and the stress of an older family member pressuring us to have our Tibetan spaniel euthanised in 2012 before we knew what was causing his painful red and scaly skin condition. I argued against the person who advocated euthanasia, saying that we wouldn't consider that until we knew what was causing his problems. Maybe we could treat and cure him if we knew what it was. A skin biopsy evenutally demonstrated cutaneous lymphoma, which was treated with chemotherapy, and his skin symptoms improved. I believe he then developed lymphoma of his central nervous system, because he became blind and confused within our house, often walking in circles and getting stuck next to furniture. Two different vets told me that blind dogs don't usually get stuck between furniture, and that his regular tendency to get stuck was a sign of confusion. The euthanasia advocate took it as a sign that we should have had him put down, but I checked the internet for the criteria used by veterinarians to evaluate quality of life in dogs. He didn't meet any of their criteria. He still had an appetite and enjoyed food and water. He enjoyed affection and time with our family, and he wasn't in pain. His personality had even become less anxious, with his confusion and blindness seeing him not barking endlessly at strangers or other visitors for the first time in his 15 year life. According to those QoL criteria, his quality of life was not so bad as to justify euthanasia. He finally passed away after my second craniotomy in September 2013. Having that conversation about dogs with our friend in Hobart allowed me to evaluate my own quality of life, and I realised that although I didn't enjoy having three grumpy and resentful males in my family on Saturday (friends tell me it's normal), my quality of life is pretty good. Ben and the kids are understandably worried about me, and just want things to be normal again, and I empathise with their emotions. I enjoy my food, I love the company of others, I'm not in significant pain, I enjoy affection, and even though having an irritable, quarrelsome, and argumentative family at times is not my ideal, I hear that it's pretty normal for most families. I just need to enjoy each moment and not think too much about how I'd like things to be different, because my efforts to tell them how I'd like them to behave is often interpreted as nagging or haranguing, where I'd probably be better changing my own behaviour, ignoring the moodiness, using humour, and giving them lots of compliments on the many wonderful things they do and their good personality traits. David is starting to exhibit several of my departed father's mannerisms and tendency to enjoy gently stirring others (Nathaniel) or making quiet and subtle jokes. It's very charming to witness.
24 April (written after midnight). things have improved quite a bit recently, with Nathaniel remembering a tickling rhyme that my father taught me when I was a little girl, and Nathaniel hadn't had it since his pre-kindergarten days: "Round and round the garden, like a teddy bear. A one step, a two step, a tickley everywhere". It's become a bit of a regular pre-bedtime activity, and he giggles so much when he's tickling me, it's a delightful game. David is still absorbed in his transition to adolescence, but we've had some good talks. And I've discovered, yet again, that 230-430 am is a good time to talk to Ben, because he's relaxed and sleepy after a hard day at work. His job is making it hard for him to recruit much-needed junior medical officers or registrars, including one who is outstandingly good, and it's even difficult to get approval to recruit locums to cover the doctors on leave. He doesn't need that kind of ongoing stress, and it is very frustrating that non-clinicians in human resources are involved in blocking his efforts to get the staff he needs to run the service. I remember how inspiring he was to work with when we first met. He was cheerful and very skilled and competent, and made an inspiring team leader in case conferences and other meetings, even though he was still a registrar. We discovered a common love of knowledge and learning about diagnostic and other professional skills, and it's a shame he's not more involved in training registrars, because I learnt more about mental health and diagnosis from him than I did from anyone at university. His love of learning was contagious, and we almost have a library of textbooks in his field, which would be fantastic to share with registrars and residents. I remember telling one of his consultants that he was one of the best clinical supervisors I'd ever had.
Ok, it's 124 am. I really must turn this off and get to sleep. Please let me know if you're reading by using the contact by email gadget on the right. This blog has had another 3000 page views in the month since I made it accessible to search engines (over 22K by now), so I'd like to know who is reading it.
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.
