13 June 2015, 550pm
I've had a good but unusual day today, after a good day yesterday.
Yesterday was marked by the boys going off to school happily, and me seeing one of my oncologists for an appointment at 1045am. He's the one who recommended that I start taking the steroid Dexamethasone again in the mornings. His theory on the increased fatigue is that it is a sign of oedema after the two lots of radio surgery. He agrees with the oncologist in Melbourne that it's a little early to do an MRI scan again, so I'll check the notes I wrote in my diary, I think the Melbourne guy said not to have another scan for 4 weeks or longer, which would be sometime this week or after. Need to check my diary, I know I wrote it down.
After seeing the oncologist, I went to the Tai Chi Traditional Chinese Massage place in St John St in town, where I had a two hour back, neck, shoulders, arms, and foot reflexology session. It was pretty good, though the use of hot stones was a little weird, and I found some of it a little painful. The reflexology was great, but I found I wasn't able to fully relax into it, as I've done in the past.
The combination of seeing the oncologist and having the massage made me feel pretty good by the end of the day, and we had a very simple dinner of meat pies and salad. I think we'll be having tomato soup on toast tonight, though I've given up bread, sugars and most carbohydrates as part of the ketogenic approach to eating. I first heard about it after the royal wedding when Kate Middleton married Prince William, and I found that a version of the Dukan Diet (followed by Kate and her mother before the wedding) helped me to lose 14kg, which I promptly recovered after my poor father passed away in January 2012. I was concerned during my Dukan days that I was eating too much protein and not enough vegetables (the Dukan diet starts with a protein-only phase, and then is supposed to have protein plus vegetable days every other day). My reading on diet and cancer has shown I was right to be concerned. High protein diets and the exclusion of vegetables is not recommended (I didn't eat enough vegetables during that time). I'm much better at having my vegetables now, and have recommenced the daily intake of vegetable juices most mornings. They're essential for a healthy immune system, which is important for general health and for fighting against cancer. As is having a low carbohydrate, healthy fat (LCHF) intake. The internet will give lots of good reading on the LCHF approach to eating. I suspect that my corrupted, high-protein, low veg, approach to the Dukan plan was not very good for my immune system, which contributed to my regular episodes of febrile neutropenia while I was having chemotherapy for the breast cancer, and may have also contributed to the development of the brain tumours.
I've found that getting out and having a walk each day is helping me to feel stronger - my legs were feeling quite weak and deconditioned after the last week, where I spent far too much time in bed each day. Some of it was a response to the aches and pains of a possible virus, but some of it was spent hiding through sleep from the horrible sound of the wind and rain. I'm planning to make use of our treadmill every morning to get some walking in, and also to use the fitball and hand weights to improve my strength, fitness, and energy levels. I'm also planning to schedule regular social activities, like catching up with some of the people I used to work with, because I find that helps lift my mood and I always feel happier and more engaged with life when I see them. Ben doesn't like me going near the hospital because he's worried about me catching something, but it's a place where I worked for 3 years and used to get along with many of the nursing and allied health staff, so I'm hoping to see some of them at least once a week before we more back to Melbourne. The thought of the move is a little overwhelming at present. The current school term ends on July 4th, and the next one will start in Melbourne on July 13th. So that gives us about 3 weeks to pack up the essential items like clothes and valuables, before we move into Ben's sister's place in Thornbury. The boys will be going to Ivanhoe Grammar school, a coeducational private school where we had listed David before he started kindergarten and when we lived in Melbourne. My friends tell me it has a good reputation. It offers the International Baccalaureate program in years 11 & 12, so I'm hoping we chose well back in 2007. Frankly, the idea of moving back to Melbourne is more than a little overwhelming, I'm just glad we don't need to sell our house here in Launceston and we can take our time to find a permanent place over there. If any of my friends or family would like to come and keep me company in the next few weeks, that would be appreciated.
It's 625pm and my 13yo is wanting food. He's not keen on the prospect of tinned tomato soup, toast and omlette for dinner, after seeing the new Jurassic part movie with a friend this afternoon. Ben tells me there's chicken thighs to be cooked in the fridge, but I don't feel hungry, or like cooking anything, I'd rather write a little more here and have a nap after a slightly weird day.
I slept well last night, and was woken by the sound of my mother at the back door. I'd forgotten that she was going to meet Aunty Julie, the widow of Dad's cousin Dallas, and that we were going to take a drive with Julie to visit Dallas's brother Des and his wife Barbara at their place down the river. It was a lovely day to drive up the river, and Aunty Julie is a lovely driver, and her newish Ford Falcon was very comfortable to ride in.
Ok, I'm going to make some chicken soup for dinner, just for something different from our regular eggs and toast suppers, and in the hope that it will give us something to eat tomorrow.
Before I go start on the soup, just a bit more about today. It was a bit unusual.
I remember visiting Des and Barbara at their place at Gravelly Beach when she was quite unwell with cancer some time after Ben and I met. I haven't seen them since Dad's funeral in 2012. They both seemed well in the sunshine, and it was heartwarming to see them both again. They used to be regular visitors to Mum and Dad's place during my university summer holidays, and it was always pleasant and relaxing to see them.
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.
