Saturday, March 20, 2010

60. The Right Direction

Welcome to Oz!
Manly Beach
Tash, Dad and I at the South Coast
Family at Minnamurra Falls Rainforest
Nick, Dad and I in the Pool
Nick, Hayden and Chloe on the Rainforest Walk
Circular Quay, Sydney
Kas and Cathy in Hyde Park, Sydney
Kas and Chloe at Circular Quay
Nick and Eliza
Drinks at the Opera Bar, Sydney
Hayden, Claire and Eliza
The Business Class upgrade
Me and Chloe near the Opera House
Chloe, Milly and Sean
The Boys in Canberra
Breens Family BBQ
Kas and Claire with the babies
Mum and Dad at Wollongong Lunch
Kas and Chloe taking a dip
Nick, Dad and I posing in the Pool...

I genuinely have had intentions to update my blog as even I know it’s been far too long. As usual, there are so many other things keeping me busy and what’s more important as far as I’m concerned, my thoughts have been far away from CML….and that can only be a good thing.

I continue to tolerate my meds well – the 140mg of Sprycel I swallow each night is the only real reminder that I’ve still got some unwanted Leukaemia cells lurking deep in my body, attempting to hide away from this unrelenting drug. When ever I’m asked about side-effects, I really don’t know what they are anymore as I’ve been taking CML medication for so long. I definitely feel well enough to work, exercise and play…so whilst I’m sure I do have side-effects, I’ve just managed to get on with life and treat this as the norm. I think it’s absolutely brilliant that I’ve been given the opportunity to take these pills and get on with life…it’s a far better option than what was available only 5 years ago.

Major Molecular Remission (MMR), or the safe haven as my docs call it, finally arrived after 4 years post-diagnosis. My PCR results were stuck at around 0.15% and then finally I cracked the 0.1% barrier in December last year with a result of 0.04% - gold! The next one arrived via an email whilst I was basking on a beach in Australia only two weeks ago – this one was 0.05%. According to European guidelines, I can now be seen 6 monthly rather than 3 monthly. Again, time to crack open a few extremely cold beers – the timing was perfect as we were on holidays with my family! So, all in all, it just shows that patience really is a virtue and that whilst a lot of CML specialists are keen to move from drug to drug quite quickly when there are signs of intolerance, a little persistence in this case seems to be working. I’m not getting carried away but after so many rubbish results, I’m not going to let a good result slip by without having a well deserved celebration.

The Australia trip last month was a great time – I felt the wrath of 300 fellow passengers as they passed the business class seating and they saw my two year old daughter Chloe lounging back, her legs barely even stretching to the end of the seat. Somehow we were both chosen for an upgrade where we were able to join Kas at the front of the long-haul flight, as she was already there on a work-paid ticket. The sun, the sand and the surf were just as awesome as the last time I saw it. We spent a full week on the beach with my family…it was great to get my pasty white scotch belly out and soak up some much needed vitamin D. It’s always a busy time when we head back home for holidays and there are so many family and friends to see but it’s all worth it – it’s always good times when we catch up with everyone and also pretty tough when we constantly have to say our goodbyes.

My work is storming along and gaining momentum which is brilliant – the busier I am, the better I feel. They were generous enough to donate a few boxes of wine for me to host a wine tasting event in Glasgow. The event was last night and it was hosted at the Clydesdale Bank, which is a beautiful new building in the centre of town. The huge rooms were donated, as was the food….so it was over to me to give some boring wine chat and let the 100 paying guests get on the booze. The night was deemed a huge success and we managed to raise over £2,500 for the Paul O’Gorman Leukeamia Research Centre. A great cause and a great night! What got me thinking about updating this blog though, happened after I met a young woman called Laura and her family – she is in her mid-20’s and recently diagnosed with CML. That immediately took me back to that first year where I struggled to understand how my life now had to be. She reminded me a lot of myself when I was diagnosed…Laura has a positive attitude, she’s already back at work and she’s helping to increase awareness of CML. It’s people like Laura that drive the public’s perception, understanding and keeping the momentum swinging in the right direction. I wish her all the best.

So the blog has now been updated, my results are good, my brother-in-law Gav’s prognosis is great after being diagnosed with testicular cancer last year, the family are good and well, Kas and Chloe are great, I’m busy and we’re raising cash for some pretty decent causes…life’s good!


Amanda said...

Hi Matt,

I just wanted to leave a comment to say that you have an incredible blog here. Your insight is not only valuable to those who know you or those within the CML community but also to those who, like me, want to learn more about what it's really like to experience CML or go through insensitive medical treatment in general. Thanks for sharing your story!

I linked to your blog in this discussion on WEGO Health: because I think you're a great example of a Health Activist and I hope more people will visit your blog and learn more.

I hope you'll swing by our site sometime and consider joining our Leukemia group or Health Bloggers group and sharing some of your favorite CML resources with us. You can also spread the word about great work you're doing while helping to encourage others who may want to become activists in their own health communities.

Thanks for all you do!

Anonymous said...

Matt -
I came across your blog and read it pretty much from the beginning to end because my situation is so much similar to yours. It gives me hope though. I have been stuck at 0.1 to 0.2% and I am hoping it finally goes down a little more at my next PCR. Wondering how your latest PCR was? I hope you continue to post now and then. Its good to hear that you are doing so well.
Sincerely, Another CMLer

Linda said...

Hi Matt,

I apologize for posting this on your blog, I just didn’t know how else to contact you! My name is Linda and I’m the production assistant for an online health community called WEGO Health ( I came across your blog while doing some research into the online Blood Cancer community. I was so impressed with the great resource you have created for the greater Blood Cancer community.

Just wanted to drop you a quick note because we recently launched a new video platform called and are in the process of building a Blood Cancer Channel featuring the advice, information and wisdom of Health Activists like yourself. I think you would be an excellent addition to the channel and I would love to chat with you about possibly creating a video with us!

Please check out our site; and get back to me at your convenience if you have any interest.

I know this note is a little out of the blue and I understand if it’s not something you would be interested in, but I didn’t want you to miss out on the opportunity.


Production Assistant
WEGO Health