To say it has been a big week would be an understatement. In 2014 I was diagnosed with a malignant Grade 3 brain tumour, and treated it with surgery and radiotherapy. In 2015 my brain cancer came back, and I was put on chemotherapy for what was meant to be 6-12 months. And now in 2016, 11 months later, my brain cancer has decided to either grow back while I am undertaking chemo, or more cancer has decided to grow. Either way, it is not what I want or need.

My cognitive symptoms and numbness on the right hand side of my body had been worsening for the last few weeks. The worry got to the point where I couldn’t wait for my scheduled scan at the end of April and my nurse, Marina, brought me in to the Royal North Shore Hospital a week early to have the contrast-MRI scans. I was able to get my scans in the morning, and see my oncologist, Dr Mustafa Khasraw, in the afternoon. A Thursday afternoon.

I walked into Dr Khasraw’s office and could see an image of my brain on the screen instantly. It was clear that there was change. A lot of change. A large growth. In the space of less than three months my brain tumour had come back from being dormant to waking up and growing with an aggressive growth rate! Unbelievable. We decided the plan is to try an awake craniotomy again, another awake brain operation. Followed up by the possibility of further radiotherapy and then more chemotherapy.

Unfortunately it’s not just as easy as just going back for more surgery, radio and chemo. More brain surgery may not provide the rewards over risk that I desired, with the possibility of leaving me disabled or a vegetable. 6 weeks of radio, which I endured two years ago, is what is recommended for a cancer patient. So having more will also be difficult and dangerous. I was nearing the end of my one-year of chemotherapy (temozolomide) when my tumour came back. I can only hope than the next type of chemo I am administered is more effective at keeping the tumour dormant.

The next day, Friday afternoon, I met with a neurosurgeon. This surgeon is well regarded in Sydney, and across Australia. Currently I have a date for my brain surgery, 9^th May 2016, in Sydney.

For now, this is where I am at. To think about the outcome and the whole situation is a daunting thought. But I must break it down, to focus on what I can control in the process of getting surgery and starting the healing process, ongoing treatment, eating well, light exercise and being healthy. This is where I feel I can push through this hurdle. Much easier said than done, but I need to start somewhere!

It has been a testing week and I am so proud of my family, my close friends and my girlfriend Larissa for how strong they have been! I am currently looking at further options and will keep this blog updated with what is going on.

Keep enjoying life

Mex

A family friend from Jakarta, Indonesia, that I had not seen in nearly 20 years found me on Facebook in January 2016, and realised I have cancer. The power of modern social media! After a few emails back and forwards with Nita, she had twisted my rubber arm and I was enrolled in a health meditation course. I have never meditated in my life and little did I know that we would be exhibiting ‘noble silence’. No talking or communicating for the whole week! ME not talking for a day, for a week!? Impossible!!

3 months later in April I was on a plane to Bali, up to the mountains of Ubud. A beautiful, relaxing and zen location. I met the other 24 participants and we were all so excited! We were run through what we going to do, the rules, and what we could expect. Most people would want to walk out of the course by day 3 or 4, it would be an emotional rollercoaster, we would experience thoughts we may not have experience, and other perceptions of life. A real life changing experience!

I found it very hard not being able to communicate with the others. But in doing so, you really concentrated all day from 4:30am to the end at 9:30pm. Of course, if you need to ask questions you can. The day I cracked on, not day 3 or 4, but day 5. The day does not mean anything, but the fact that I still cracked. I thought ‘what am I doing here? I’m just going to pack my bags, get on a bus and go surfing for the rest of the week!’. Knowing that I would feel like this, I spoke to Pak Michael, one of our teachers, and he guided me through what I can concentrate on. By that night’s meditation session I was back into the meditation mode!

By the end of the week we had learnt a lot about meditation, loving kindness, wisdom, mindfulness, positive and negative energies but most of all, we had learned a LOT about our selves! I would definitely go again and would also recommend it to others. You don’t need to be sick or ill, it just enhances your positive approach to life and loving life!

On the last day, we all could not stop talking. It was like 7 days of talking coming out in one day. Pak Merta and Pak Michael were full of wisdom and were our amazing and teachers for the week. I would recommend anybody and everybody try this life enhancing experience, even if you don’t think you could do it! After all, its when we push ourselves that we get to greater heights and improve ourselves and our lives!!!

www.BaliUsada.com

Keep enjoying life

Mex

Pak Merta and Pak Michael, our teachers

Telling my story about living with cancer

The meditating room in Ubud, Bali

It’s hard to believe that 2 years ago today, I was delivered the crippling news that I have a Grade 3 brain tumour at Salford Royal Hospital, UK. The news that changed my life forever! My plans for my career, my plans for traveling, but most of all my plans for having a family!

It is an odd feeling today. If feels like only yesterday I called my distraught family and close friends. But in the same thought, it also feels like a lifetime ago given the amount of traveling I have had the opportunity to do! I wouldn’t have come this far without the support of my family and friends, so thank you! Making the 2 year anniversary is a big achievement for me. The doctors said that people in my position have a 3-5 year life expectancy. So this makes today a nervous day but also a small sense of accomplishment.

In the past 2 years, I’ve gone through the tough times, and the good times. A partner (boss) of a firm I was working with told me from his own experience that cancer can be “a confronting, confusing, emotional and often lonely experience…” and offered support in any way. From that email in the early days of my cancer I can say this is all very true.

There is always someone out there to talk to or support you. It’s just a matter of finding to right person to talk to, or to just relax and not talk much, or just to take your mind off a situation and have a laugh. Just as people react to differently to bad news or situations, different people with help you in different ways dependent on what you need. They just need to know you want or need their help! I hope to keep travelling and living to enjoy my life, and to also help others in need if I can.

Keep enjoying life

Mex

In my last blog post, Jan 2016 scan, I said my scans were positive and my oncology doctor was happy for me to go snowboarding in Japan… after I had my 5 days of chemo. A few days after chemo, I was on a flight to Tokyo, then a 6 hour bus to Hakuba. Hakuba is on the mainland of Japan, North West of Tokyo. I have been to Japan and Hakuba before so this trip was purely for snowboarding, no sight seeing. I was in Hakuba for 3 weeks, 15 days of lift passes for 9 different mountains/resorts.

In the first week I met up with some friends and we snowboarded, ate and wondered around the beautiful Hakuba and what it had to offer. I hurt my ankle in the first week and had to take 4 days off the slopes. After my friends left to go back to Singapore, I had a few days to myself. I’m realising now that I am much more comfortable with my own company these days than I ever was. Maybe it’s because I have had so much ‘me time’ over the last 2 years since being diagnosed with cancer. Anyway, I heavily strapped my ankle and enjoyed taking it easy on the slopes the remaining 12 days of my lift passes. Even with I strapped ankle I was trying a few silly things every day and seemed to aggravated my ankle every time. Not the smart thing to do but I didn’t want to waste my time on the snow. In my second week I was lucky enough to have a few good roomies in my dorm and I snowboarding with them a few times. We found a few onsen (Japanese hot springs) around Hakuba. They were AMAZING! I ended up going every second day. I found the onsen helped release the stresses of my body and mind. It was a great time to recover and zone out. There is a myth that you can’t go in to an onsen if you have tattoos. I have 6 tattoos, 5 of which are larger than an open hand and I was never refused entry (maybe all the layers of clothing help).

For my third week in Hakuba my girlfriend joined me. It was probably a good thing I injured my ankle as it meant I was happy to go at a slower pace and help her as a beginner/intermediate boarder. Within 3 days she had progressed from green beginner runs to black expert runs. I’d like to say it was my teaching, but no, it was her natural ability to pick it up so quickly!

Over the 3 weeks, my favourite mountains/resorts to snowboard were Happo-One (across the road from my accommodation), Habuka47, and Iwatake (the most impressive and beautiful location). Before I knew it my 3 weeks in Japan was over and I was heading back to Australia with my girlfriends company to entertain each other.

Within days of getting back to Australia we were driving to Coffs Harbour for a friends wedding. A wedding integrating both Australian and Bhutanese cultures for a diverse and breath-taking wedding. If and when I ever get married, I would love to have a wedding as amazing, relaxing, joyful and loving as theirs! 2 days later I was back home in Sydney taking my next cycle of chemo, the 10^th cycle.

I am very grateful of being in a position where I can enjoy my life mentally and physically between chemo cycles. Many other chemo drugs and dosages do not allow such an active lifestyle as the one that I am currently living and loving! Although I have a malignant brain tumour and only given a few years to live, I love my life and what I am able to achieve. I always think of Abraham Lincolns quote:

Its not the years in your life that count,

It is the life in your years.

Keep enjoying life

Mex

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Blue bird days at Hakuba 47.

Another blue bird day at Iwatake.

The snow when I arrived at the lodge.

This scan has been my most nervous to date. When I look at the last few weeks, I realise a few things. One, I have kept a lower profile recently. This then leads to less support and less people aware of what is going on. But secondly and maybe more daunting, I am nearing the two year anniversary of my diagnosis. A diagnosis where the doctors told me that my expected life expectancy is 3-5 years.

My Sydney neuro oncologist, Dr Mustafa Kashraw, has been very straightforward with me. This scan has shown the tumour has been stationary in its movements and growth. The best thing that I can currently hope for. I’ve been lucky that my doctors in both the UK and back here in Australia have been very good, and I have built up trust in them both.

Everything in life changes, and we must change with them. I once had life goals and plans to get there, things I wanted to achieve by certain points in my life. All of these goals and plans went out the window in March 2014 when I was diagnosed. Since March 2014 my goals have been to make the 3-year milestone to stay alive and healthy. The next milestone is then to make the 5-year anniversary of my diagnosis and outlive my doctors’ original diagnosis and life expectancy.

To make these milestones I’ve looked at my health, my diet, my exercise, what makes me happy and also the stress levels and what causes them. All of these factors affect my body. These cause a cellular change in the body and in turn will affect my physical and mental health. I will see how these changes help and change my life – so keep an eye out for future posts and how these changes go!

But for now its time to go snowboarding (in Japan) and enjoy life until the next scans!!

Mex