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.


Sunday, 1 March 2015

Making the most of the day before surgery

I'm about to sleep after a wonderful day in melbourne. Our hotel in Lygon St (The Downtowner) is much more pleasant than the seedy joint in Sydney Rd, Coburg, where the other residents smoked, argued, and swore nastily outside our room. It's peaceful here, and fantastic to be so close to everything on Lygon St. We had breakfast at an italian place over the road, and were joined by my old housemate Debbie and her family. Matt took our boys and their son Jasper down to the park on Lygon and Argyle St to play for a while (Nathaniel said they were there for 2 hours), while Deb and I chatted and devised a plan to check out our old place in Barkly St Carlton. We thought we'd write a letter to the residents, including some photos taken when we lived there, and asking if they'd mind if we came to visit some time. I found that house with a couple of friends in January 1989, and lived there until 1995, when I moved to 202 Waterdale Rd in Ivanhoe (some of you may remember my elderly landlady, Del, who used to keep her oven stocked with Chivas Regal, which she drank every night. A lovely house to stay in, I had a flat at the back, she lived at the front, and whenever I came home and popped in to see her, she said "Oh, my wandering star! Where have you been?" 
I had a wonderful Thai massage in cardigan st, the best massage I've had in 25 years. I could cope with treatment like that every day. I felt like I was floating down the street as we walked to the museum afterwards.
While on Lygon St, I also caught up with my former VU student and current friend  Nancy Salton, and we discussed getting her D.Psych research project published. It was so good to see her again, though I was sad that little baby Patrick stayed at home  I haven't met him yet.  I then met some other former students and current friends of mine at the museum.  Cressida MacCuspie reminded me that she is Nancy's cousin, she brought her daughter Ava who went off with Ben and our boys for an excited tour around the museum. I also caught up with a couple of former students-turned friends, Alexia Pavlis (VU) and Chrisitne Canty (who nursed David when he was a baby and I took did some sessional lecturing at Melbourne Uni. Alexia brought 4yo Killian, who remembered me from last week, and who David helped climb the ladder to the slide in the playground. Christine brought Jack and Len, who were as happy as Killian to give me little boy hugs. Chris and Alexia did locus at St Vs when I worked there, and Cressida had two placements there in the mid '90s, so it was like being with neuropsychological family. Another neuropsychologist who did a placement at St Vs, Sara Fratti  came with her husband Fede, their toddler Agostino, and her father. If we move back to Melbourne, I'm going to learn Italian, and practice my conversation with Sara and Fede. When I'm well enough to travel overseas, I asked Sara if she could advise me on good places to visit in Italy, places where we wouldn't be surrounded by tourists or excessive busyness. I want to see how real people live, traditional towns and villages. Taking to my Thai masseuse today reminded me that I hate overdeveloped, overly busy, tourist-infested places.  
There are a number of very long sofas just inside the entrance to the museum, which were perfect for sitting and talking to friends with toddlers. We then went back to Brunettis where we saw one of Ben's friends with her daughter. and I couldn't resist seeing a movie at Cinema Nova (for old times' sake). It still had the purple velvet walls and seats from 20 years ago. David and I saw The Second Best Exotic Marigold Hotel, and it took me on another trip down memory lane, being set in Jaipur, which Ben and I visited in 1998. David held my hand for most of the movie, so sweet. We found Anne Sculthorpe and her partner  Mal waiting outside for us (David is now taller than Anne), and they showed us a great burger shop where I bought a delicious salad (pomegranate, goats cheese, and grilled chicken), and David wasn't hungry, but was happy to have chips. I'm feeling full and satisfied with catching up with so many beloved friends today. I must sleep now, we're waking at 6 tomorrow, taking a taxi to the hospital at 640, I get admitted at 7, and surgery is scheduled for 9am. I have to fast from midnight, which won't be a problem, because I don't think i could eat another thing.
I'm glad I wasn't admitted to hospital today. It was wonderful to be able to catch up with friends and have pleasant experiences today. I hadn't planned to see a movie or have a massage, but doing so allowed me to relive some of my favourite experiences from my early adulthood. Keeping so busy has prevented me from worrying. I suspect I will sleep deeply tonight and dream of massages in bamboo huts on tropical shores, and of laughing with friends over fine food and champagne. I also hope to dream of being fully recovered, and of all the holidays and wonderful experiences we'll be able to have as a family. 

I explained to someone that my tumour is a little like a patch of mould in the centre of a piece of bread. If you just cut out the mould and leave the bread alone, the mould might grow back because it had sent tendrils out through the bread. The planned anterior temporal lobectomy is akin to removing the mould and a larger portion of  the surrounding bread, leaving the crust and some of the outer bread. The treatment with radiotherapy and avastin will be like putting the bread in a sterile container in the fridge, to reduce the chance of the mould growing again. Cancer isn't a fungus, by the way, but I found another article about the role of cytomegalovirus (CMV) in GBM, which suggested that other therapies might become available soon. http://youcancatchcancer.com/2015/02/28/cytomegalovirus-in-human-brain-tumors-role-in-pathogenesis-and-potential-treatment-options/

There is always hope. I will be looking at going somewhere overseas where we can pay for immunotherapy treatment that will help my immune system to recognise GBM cells and attack them. There's also a wearable electronic device by a company called Novocure which has been approved by the FDA in the US, and has been shown to improve outcomes for people with GBM. We'll be looking into that as well in the next couple of weeks.

I am so tired now, my eyes are beginning to ache.

I'm looking forward to posting an update sometime tomorrow. God bless all of you, and thanks so much for your comments and messages. My life is so rich for knowing you all. Don't be shy about keeping in touch after surgery.

For those of you in Melbourne, I probably won't be ready for visitors until Tuesday or Wednesday, and visits will need to be brief (20-30 minutes), as I've been very tired after past brain operations. A brief text message might help me to coordinate visits You don't need to bring me anything but your company, or maybe send me a card if you can't make it. I'm thinking of all of you, and look forward to seeing many of you some time soon. Sending you  love and wishing you all a long life, good health, good fortune, and much happiness.
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