Wednesday, July 23, 2014

62. Still Here

Chloe at Dee Why
Holly holding our new nephew Noah
Chloe and I at Dee Why Beach

I'm not quite sure where to’s only been 3 years and 2 months since my last update. First things first, life is good! As I look back over my posts that began nearly 9 years ago, it’s a nice relief to be able to say that. Sitting in an eerily quiet haematology ward and hearing the dreaded, and very unexpected, news from a nervous registrar, seems a lifetime ago. Those words however, still ring as clear now as they did in 2005... Life hasn't all been good however during these past 3 years, 2 months but I'll elaborate on that later. It's mid-Winter in Sydney and there's a distinct night-time chill in the air - it's funny how we've acclimatised since moving back to Australia nearly two years ago. I would definitely have a lot less clothing on if I was still in Scotland! We made the call to move pack up our life and move to Australia as my CML was stable, with my PCR seemingly resolute on staying at 0.01%. Timing was also good due to the kids ages of 5 and 1 (just short of 2), with this being such a great opportunity for our girls to make good use of their Aussie passports. Whilst we have never regretted the move, you can never underestimate what stress a move like this can put on your body - I'm not sure if it was sheer coincidence following the stress of the move, or a genuine side-effect from my ever reliable medication Dasatinib, however my first appointment with a highly respected CML specialist in Oz didn't go as planned. We came here for the life I knew growing up...sun, sun and sun! The lifestyle is awesome and very easy to slip back to the old way of life. I didn't exactly anticipate being told by the specialist that he had picked up a slight heart murmur and that he will need to refer me to his old mate, the Cardiologist. Shortly after squaring up my bill (I'm missing the NHS already!!) I was hooked up for an ECG, followed by a echocardiogram - exactly 2 months after moving back to Australia, thankfully provided due to my CML stability, I was being told I had Pulminary Hypertension. This small, benign murmur had now morphed into a complicated disease, very difficult to treat (lung transplant being the final option apparently...) - and following up my old and new CML Specialists, there can be a rare side effect from Dasatinib that causes this increase in pressure from the lungs to the heart (hence causing a murmur). Clearly, these Meds had to stop immediately and then applications were made for me to move onto my third line of defence, having already tried and failed on Imatinib many years ago. The good news is that I was granted access to Nilotinib and within weeks, my follow echocardiogram showed a waning presence of Pulmonary Hypertension, then again a month later, it was gone. It seems Nilotibib and I work well together and since then, the PCR's dropped away from the familiar 0.01%, all the way to 0.003% after 10 months - however, my latest result just came in and its back at 0.009%. You try to train yourself to manage these fluctuations of results, but I still can't seem to unfortunately. So whilst I'm not happy that the PCR has 'spiked', it’s still lower than 12 months ago...and I've been reassured by my Consultant that 'this is just the same result, don't worry'! I'd be keen to hear other theories on these spikes...Kas and I believe that the harder I push my body physically, the less effective my meds prove to be - this is probably the only theory that has upheld since diagnosis. Whilst I could swear that I had no known side-effects whilst taking Dasatinib, my change to Nilotinib gave me an enormous boost of energy. Since Christmas, I've regularly ran approx 8km (5 miles) three times a week, played tennis every Wednesday, surfed with my mates when I could on a weekend and went to the homemade, downstairs gym three times a week. I easily feel the fittest I have ever felt, however the pre-empted PCR spike that coincides with this activity has occurred once again. This could be a coincidence as I've said, however the only real thing that has proven true in my limited medical experience! Sydney has changed a hell of a lot! The beaches are just as clean and the sun, just as hot...interesting to see however, that Australia is now one of the highest consumers of champagne, high end aged whisky and craft beer. Yep, I am still in the booze industry and love to see how countries change over time. We are having an awesome time since moving back and the girls are absolutely loving it - with their very own backyard pool, a dozen jaw-dropping beaches within a 15 minute drive and plenty of good weather to make the most of the outdoor adventures on offer, what’s not to love. And whilst we'd love to be in Glasgow for the Commonwealth Games starting I said earlier, life is good!
Chloe and Holly at Port Douglas

Karen and Nina
Our Family - from Curl Curl Beach
Winter holidays in Port Douglas
Bushwalking with Holly

Karen with the girls overlooking Palm Beach
Karen and her Mum Anne
Thumbs Up from Chloe and Holly at Shelly Beach


Anonymous said...

From Big Sky Country, Montana - happy to see an update - having you absent so long lead to worry - glad you are enjoying being 'down under' remember your sunscreen!

CAS said...

From Manila, Philippines - I was diagnosed with CML February 2011, just about a month before i turned 24... I want to ask and share many things here about my CML story but I just dont know how to start. But I'm happy to read your blog...

Anonymous said...

am cleaning up old magazines, and read your story in the observer magazine of 21 May 2006, so now looked up your blog (august 2015)... and see the latest post is in 2014. So I do hope that the sun is still shining on you and your family in Australia, and that all is going well. so greetings from an aussie in france! and best wishes for the future.