Wednesday, January 30, 2008

46. Super Sunday

Photos: Kas and Chloe on the Computer; Mum & Dad on Queen's View; Road to Aviemore in the Highlands; Hiking in Mugdock Country Park; Hills over Inverary; Chloe in her Seat; Boat Docked in Inverary; Bagpiper in the Highlands...
It’s hard to know where to start this one off – I’m feeling surprisingly energised and enthusiastic about so many things right now, so instead of placing them in any order, it’ll probably just come out in an incoherent mess. I’m not sure if it’s because it’s fresh new year that makes me feel as though I’ve got a blank canvas to work with or that I’ve just had a holiday for the past three weeks but I’m trying to make the most of this while I can. And to top it off, the sun is shining in winter UK right now…love it!

My last major catch up with Super Doc was on the 18th December, just before my folks arrived from Australia and when I finished up work for the good part of a month. The long time between doctor appointments eases the mind and let’s you concentrate on other things that would normally have been seen with more importance. I had my PCR taken then and we also discussed a range of things from side effects and fundraising for the new Leukaemia Research Centre – I didn’t want to let the catch up be dominated by bad news and trying to stay optimistic. It’s a tough day on the body and mind walking into the Beatson Oncology Centre, Kas has always noticed a sense of stress that I emit before my appointment. I’ve only noticed I’ll have cold hands, a rarity for me, and that it makes it harder for the vein to bulge and offer a decent supply of blood to be extracted and tested. Obviously the place is full of cancer sufferers, most with a determined face as if they’re trying to show that they can beat these nasty cells that have taken a liking to their cells – I often wonder what they are suffering from, hoping that they will all conquer their illness and get rid of the head scarf that have been forced to don. The ones that shake you up are when a whole family will exit a room with swollen teary eyes, evidently with bad news. Although I’ve had a mixed bag of appointments and thing to deal with, it does however open your eyes up to the reality of what’s going on to others. Witnessing the silent killer at work! And it’s definitely not all bad news either. News of someone’s remission is equally easy to read on the people’s faces who have been obliged to attend the clinic full of people in the same cancer boat. To hear that someone is on the mend is very hard to top…

So, on the back of my observations and outcomes from the Oncology clinics, I’ve finally joined the group who “seem” to be on the mend…my PCR result came back last week. It’s been a fairly bumpy ride on the PCR front – these extremely accurate tests of Leukaemia levels are the deciding factor of your treatment. Since changing from Gleevec to Sprycel last July, my PCR have continued to hover around the 1-2% mark. Good, but not quite good enough. When Chloe was born it jumped from 1.2% to 1.7%...quite scary feeling when I had finally started my family. I then had my meds increased from 100mg to 140mg per day – it seemed quite obvious as the docs were treating someone with a healthy love of burgers or just “big boned”. That did the trick – the PCR dropped from 1.7% to 1% and then the latest result has finally placed it at a very good 0.7%. This now puts me in a tough predicament. I’m pretty stoked that it’s cracked the 1% mark…unreal. But I’ve got to be mindful that it’s gone up in the past after a low result. I’ve had a few champers to celebrate the good result as they don’t come by too often without getting too carried away – stay positive and optimistic is the key! My next PCR test is not planned until around April, my 30th birthday could coincide with news of my dodgy cells moving extremely close to remission. Bring it on.

My Annual Fundraiser is gaining momentum and we’ve just locked in a date for participation - put Saturday June 21st in your diaries because we’re going to need everyone to dig into their back pocket and dish out some cash for a very good cause. The Paul O’Gorman Leukaemia Research building is due for an imminent opening, very exciting stuff as the building will be home to some of the world’s best Researchers, Bone Marrow Transplants, Leukaemia treatments and my Super Doc consultant is the Director. Me and a few Aussie & Scottish mates have decided to take on the 3 Peaks UK Challenge on the longest day of the year – climbing the highest peak in Scotland (Ben Nevis 4,409 feet), Wales (Snowdon 3,560 feet) and England (Scafell 3,210 feet) - 11,180 vertical feet in 24 Hours. Anyone keen to join us, you’re more than welcome…there’s no choice on the donations though ;) The Sunday Mail are running a story this Sunday, funnily enough, about our optimistic venture where we’re hoping to get to a £6,000 total, so it’ll be very good to spread the word.

I’m still waiting patiently to be asked to continue my public speaking on the CML Tour, a nice trip to Oz would go down very well. We just got emailed the feedback from the recent CML Conference held in Edinburgh and I’m stoked to see that I’ve topped the list in the speaker’s rating – 4.8 out of 5…gold! I had made a few gags about my big bald head that must have gone down well on the day…

My folks are now heading back to Australia after a successful tour of the bonnie lands – it’s been great to see them with my wee girl Chloe who changes almost daily. Also good for me and Kas having a few extra babysitters around! The last couple of visits from the folks have been littered with bad news and illness. It was only last June when they were here when they had to see me lying on a hospital bed with Pneumonia. It’s priceless that they got to see me looking better and the PCR heading in the right direction. It makes such a huge difference.

Wish me luck for the appointment next week – my mind should be fairly clear this time as I’ll be having a few beers at Murrayfield watching Scotland play France in the Rugby 6 Nations on Sunday. Thanks for the emails and messages, keep them coming in…


Anonymous said...

Hi Matt, It's been a while since I posted on your blog but it's so excellent to hear you are doing well. I check your blog regularly to see if there are any updates. My latest pcr test in Nov was 0.10%. I was thrilled - the lowest count ever. I was diagnosed a month before you and live in Melbourne. Still on glivec 400mg and heading in the right direction!!! Keep up the good spirits and here's to an excellent result for the both of us. I go for my next pcr test and bone marrow biopsy (yay) on Feb 11 so I'm concentrating on an even better result than Nov.

Take care and good luck with super doc next week.
Cheers, Stef

Anonymous said...


You are looking so good, as is your lovely family. I hope Sprycel is being kind to you with regards to side affects. I wanted to say it is great to hear of your 1% PCR, but I am watching for that 0% target as I am sure you are. After my BMT I can say with confidence that you would do great if you have to go there but your quality of life on drug therapy appears to be very good.

You have always had such a great attitude throughout this ordeal and that my friend is truly inspiring. If you and the family ever find yourself in the States you are always welcome to stay with us. Colorado Springs is beautiful and the hiking, fishing and skiing is fantastic.

Take care,


Anonymous said...

Hi Matt,

Just want to say well done on getting through this battle, i know partly what you are going through, was diagnosed with cancer when i was 19, Am now 2 and a half years in remission though! Look at my website

Keep up the fight and always stay positive!


William Hamilton

Anonymous said...

hi matt,

I had a look at your blog after reading your story in the Sunday Mail. My mum has recently been diagnosed with CML so I have been looking all over the net for info on treatments. You appear to be doing very well. Like my mum you sound in good spirit. Good luck. Geraldine

Anonymous said...

Thank you Matt for sharing your story. A dear friend of mine just was diagnosed with CML. Your story gives me hope and now I just have to convince him somehow. Also, I will be signing up for Bone Marrow donation. Something I always thought of doing just kept putting it off...not anymore. Take care and hope all will be well for you and your family...lovely pictures of your family by the way.

Mary Cox
Hartly, DE
United States

Anonymous said...

Hi Matt.

So glad your doing well. Congratulations on the new arrival. She's beautiful...

Keep Smiling.


Erin Sinclair

Anonymous said...


I am hitting my two year anniversary with CML. I have been right where you are now trying to break that 1% mark but my last numbers were .0015. I hope that gives you hope. I am waiting on my most recent labs and should have the results in about a week. C'MON 0.00000!!!!!!!!!!!!!!!

I have made up some shirts, some specific to CML, that I put on My philosophy on this whole CML ordeal is you got it whether you like it or not, so you may as well laugh when you can. Since there are only 22,000 of us (cml patients) nationwide I am not in it for the money, that is for sure. It is part of my therapy. Plus it makes my oncologist laugh when I show him the latest ideas. My store front is

Hang in there,
Mike Jacques
Glendale AZ