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!
