|Chloe at Dee Why
|Holly holding our new nephew Noah
|Chloe and I at Dee Why Beach
|Karen and her Mum Anne
|Thumbs Up from Chloe and Holly at Shelly Beach
My name is Matt Sinclair and I was diagnosed with Chronic Myeloid Leukaemia on 19th October 2005 at the age of 27. I have written this diary to keep my family and friends informed how things are going with me in Scotland.
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!
It’s only just hit me after reading through my latest post, how much has occurred since April. It was never my intention to let my blog updates slip; it’s really just a matter of circumstance than laziness. After I finally got used to penning my thoughts on a regular basis, I actually found it therapeutic as more often than not, it took me to actually write it down first before I could understand it. But now, thankfully, I find myself in a pretty good position on a personal level with regards to CML and most other things in my life manage to dictate rather than the opposite. However, it’s only when I get the best news I’ve had in terms of prognosis, that the trend continues. The good with the bad…
The customary email from my doctor arrived, 2 weeks and 2 days after my PCR test, and with usual trepidation, I opened it to reveal my latest result. This one however, read that unfortunately my test had become “lost” in the system and for me to book in another appointment and re-start the process. So, again, after 2 weeks and 2 days from this second test, the email again popped into my inbox…this time there was a result and along with the words “getting there!”. This new result showed a PCR of 0.125% - slightly down from the last one of 0.149% but nevertheless, it was the best result I’ve had to date and now achingly close to the “safe haven” of 0.1%.
The same day however, whilst celebrating with a glass of Majella Cabenet Sauvignon from Coonawarra in South Australia (unreal stuff!!!), we were informed of some awful news about Karen’s brother Gav. My mate and brother-in-law.
He had just been diagnosed with testicular cancer. At 29. Shit.
Gav’s now undergone a major operation to remove the tumour and now undergoing chemo, in the same cancer hospital as I go to, and is mid-way through the first round of two. That shouldn’t even be in the same sentence – “same cancer hospital as I go to”! He’s a tough bloke and although he’s going through hell right now, I’m sure he’ll battle on through and come out the other side a stronger person. It just doesn’t seem right for Kas to have a husband and brother attending an oncology ward.
Kas, Chloe and I managed to get away with our mates to France in June, 3 couples and each of us with a child under 2. It was an unreal place – we were in an amazing island called Il De Re on France’s west coast. The weather was perfect, as was the wine and food. Within the French village, we were spoilt with a daily marketplace bursting with seafood, cheese and all things French. I managed to stack on a few kilos that week, but it was well worth it.
Then to follow, it was off to Lisbon in Portugal for my mate Paul’s stag weekend…organised by my mad mate Ish. It was an unreal and surreal weekend – it was great to catch up with the boys and carry on like old times. The deep-sea fishing wasn’t well received by a few, as sea-sickness got the better of them. The next day, it was time to dress up and don the gear that was requested of us…Reservoir Dogs outfit (black suit, white shirt, black tie, black glasses). Then Paul was dressed up in an authentic Arabian sheik outfit, where we were then transported to Benfica Football Club for a stadium tour. It was only when we arrived, did the reception we receive make us aware how truly realistic it looked. A sheik (dubbed Sheik Ali Bin Drinking) surrounded by 5 guys dressed up as security. Within 5 minutes we were ushered into the secret tunnel to get a private tour by a Benfica official, photographers, groundstaff and even the football club mascot, a massive bald eagle. I think this was sparked by Ish when he said “the Sheik wants to buy this club”. Overall it was a great weekend, plenty of banter and plenty of tourists caught up in the royal tour from the “aussie” boys from Saudi Arabia…
We've also been to two unreal weddings - John and Julie & Chris and Ros. Both absolutely brilliant days!
My work is still very busy, although we are currently undertaking a restructuring process – I don’t think there are many industries that aren’t affected by the economic slowdown. I still absolutely love my new job but there’s quite a lot of travel involved, London every two weeks, and the toughest thing is not seeing Kas and Chloe, especially seeing Chloe is changing almost daily - her new words are "toast", "daddy took it" and my favourite, "magpie". In between all these trips to London, Kas has also spent a week in Australia on a busy work visit setting up some medical drug trials (Chloe and I may even tag on her next one if she goes back in January). But it feels great to push CML aside and put my head down and get on with building my career and getting on with life. Because CML medication is now so advanced and it offers such a great quality of life, a big issue with this disease is the mind-set and mentality (is that the same thing?) of the individual. If you want to lead a “normal” life, then you can certainly give it a try. In the majority of cases, the only thing stopping you is you.
I’m back at the docs in a fortnight, where I’ll have my three monthly catch-up and PCR test taken. My folks will be visiting in 5 weeks time, so they'll probably be here when the result comes in. Please keep the emails and messages coming…even though I’m rubbish at updating. Best wishes also to Gav, who I’m sure will kick some cancer arse!