Friday, May 18, 2007

34. Kilts and Gowns

Photos: Gav & Nat's Wedding - Me, Brian, Suzanne, Kas and Anne; The Happy Couple Gav & Natalie; Mum, Dad and Anne; Kas's Family; Amalfi Coast, Italy; Me at Positano; Me & Kas with Mt Vesuvius in Background; Kas at Hotel; Mum arriving at Glasgow Airport...

It's not until I've come back from my holiday, totally chilled and relaxed, that I've started to think about what's been going on lately. I'm only realising now that I've become slightly detached and distant from CML as there has been so much else going on around me. It seems whilst I've been away, there have been some pretty big movements in the management and treatment of CML, with the governing body NICE giving the new drug Desatinib approval on the NHS in Scotland - something I have only just read. Gotta love the holiday ignorance...(I'll blame it on the lack of internet, etc) And this news of NICE's approval means only good things for me, I'll get to that part soon...
So my parents finally arrived here on the bonny shores of Scotland two weeks ago, after a long, long, long, long flight. It's such a good feeling to stand there at the Arrivals gate waiting on my folks that I don't get to see too often. They always look well after the 18,000km journey in the sky - something that I can't say for myself. And since then, we've thrown them in to the hectic lifestyle of ours and asked them to keep up...they're doing a pretty good job so far.
Then within days of their arrival, we were back in the Jacobs Creek Mobile and cruising up through the Scottish countryside, en route to the east coast near St Andrews for Karen's brother Gav and Natalie's wedding. The venue was unreal! Such a beautiful, old castle-looking pad that a Duke or King must have once called his humble abode a few centuries ago. The good looking couple made us proud as they stood in front of their huge gathering and read their vows - there weren't too many dry eyes after this ceremony! Then it was off for a great night of speeches, kilts and gowns, a 5 star meal and finally time to do my thing as the band tuned up their instruments and began to belt out a few Proclaimers tunes. Apologies to the hotel once again for burning and churning up that dance floor...

I know sometimes I push my body a bit too hard and maybe force the Gleevec meds to work even harder...Kas knows I've occasionally gone out on my bike or hit the gym (or burned up a dance floor) when I really should be kicking around at home and relaxing myself. Originally, the fitness plan was to combat any major weight loss that is a side effect of a bone marrow transplant but as I've gone on with this CML journey, I've felt that it also helps me physically and probably more importantly, mentally. If I feel stronger, I feel that I can take the Leukaemia on directly and try not to force my body into just combating the dodgy cells but also keeping the rest of me in a good way. One way I found out to do this, was to head off on holidays as we did last week.

I've seen plenty of photos of this place and to me, I can't say they've ever done it justice. We landed in Naples, Italy last Wednesday and as it was night, we never got to see the spectacular views and scenery surrounding us on our way to Sorrento. Fortunately the weather was very good to us on our whole trip and that also made the cliff lined towns even more beautiful. We made our way around to Positano on the Amalfi Coast where, I have to say, I was greeted by possibly the most jaw-dropping place I've ever visited. This place was so incredibly steep, the traffic in true Italian style, just drove and parked anywhere they wanted (including the main road in) and it was surrounded by huge vertical cliffs in all directions. This was the place I never thought photos can do any justice! The only poor option we made that day was after a very long walk down to the bottom of the town, Kas in her stubborn ways, ignored the only taxi and walked up thousands of stairs to the top with her big pregnant belly holding her back. Then it was back on the road to brave the Amalfi Coastal road (some sections of road seemed to just hang off the side of the cliff) and also brave the crazy Italian moped riders that are probably more dangerous than anything else you will encounter. So in all, it was very good way to get away from anything CML related besides the Gleevec, relax and munch my way through an authentic Italian pizza every day...

Now back to the NICE news about Desatinib...after munching Gleevec since October 2005 on 400mg, 600mg and then 800mg since January this year, my PCR hasn't managed to pull below 1.5% and most of the last year it's been stuck at 2.5%. The docs say I can get down to 0.00something (or maybe undetectible) and that's what they hoped the 800mg would do for me. So after getting knocked back from Novartis to move over to Nilotinib, my doctor has very kindly informed me that I've been given the green light to change meds next week and start on the regular Desatinib dosage. It'll be weird to get used to a new drug and get out of the habitual Gleevec routine I've grown used to.
So it's next Wednesday with my consultant that I will pick up the new meds - great news for me! Then at the end of the week, me and the gang will be "Conquering the Corbett" and raising cash for MacMillan Cancer Research. The Herald News article last month turned out to be very good for the charity and really boosted numbers for the Corbett Challenge - how could anyone say no to the two HOT guys on the last months magazine cover?... For more info, you can can check out our link at -
My old man will also continue his photo blog as he did last year - for very good Scottish highland photos, check out -
Until then, keep the messages and emails coming in...


Anonymous said...

That is bloody briliant news mate!!!! Were stoked for you! A very action packed week for you all. The wee man and Nat's wedding looked like it was a top afair. Both looking very beautiful...well at least Nat;)
Italy looks a very spectacular place to visit; shame we couldnt see Mt Vesuvius because of your big head but! Good to see mum and dad having fun. Love to you all, Nick, Claire and Hayden.

Darren said...

Hi Matt
Italy looks awesome - cannot wait to get there myself. Great news about the new meds - looking forward to reading about the good results - and the next Sinclair Clan adventure. If I don't get to see your parents while they are here, please say g'day to them.

David Cox said...

Hey Matt,

Sorry Glivic hasn't worked out for you after all this time. You have certainly given it a good try. Good luck with Sprycel (dasatinib) and don't worry about getting used to it. Although it is more potent than Glivic, I think you will find the side affects much less severe, at least those that affect quality of life. My major side affects have been fatigue (no change from Glivic) and myelosupression (the docs are telling me I'm intollerant because of low platelet counts.

Take care Mate!

Anonymous said...

Hello Matty & Karen,

Fantastic news about the baby. Matty, make sure he learns all the fundamentals - A nice Aussie drawl in his voice, A good passing and kicking game and most importantly hope he is endowed with the "Gift" that the good Lord bestowed upon his Father.
Dont know about K 2 mate. You do know it is a touch higher than Billy Goat Hill, dont you?
Kaz, make sure you look after the next Wally Lewis in your tummy. The Kangaroos are relying on you!
Take care Matt,