Friday, December 29, 2006

25. The Cobbler






Christmas in the New House; Kas with Xmas Tree; Matt & Kas on top of The Cobbler; The Cobbler standing just under 3,000 feet; The Group having a well earned rest...

We were looking for all the signs, constantly surfing the weather channels to shed some light on the Christmas weather. I've managed to experience one white Christmas a few years ago in the bonny lands so I can't be too disappointed with the news that it won't be white. As the frost rested on the windshield of the all cars in the neighborhood and the sun sunk over the white horizon, it's funny to realise how Christmas Eve can still give me a child-like buzz. I love it, waiting for an appropriate time to wake up and tear into my presents patiently waiting for me under the tree. It was the 3rd one we've spent in Scotland and I do love it; the Smith Clan make a huge deal of spoiling me... but I'm getting to the point where I'm ready for one with sun, surf and BBQ's. Maybe it'll be the year after next as my folks have agreed to take the journey over and spend it with us next year. Already looking forward to it!

Well the fingers have stayed crossed, I've remained positive and I've tried to keep my body from getting pushed too hard...so I was a bit surprised when I received my latest PCR result last week. The last one was about 2.5% and unfortunately we've been told that it still hasn't budged, we have a stubborn one on our hands. It's hasn't thrown me off my tracks but it does get me a tad frustrated when I feel that it should be going my way and that the drugs should work for me the way they were designed to. I'll now be heading back to see the consultants and we'll have a look at the next viable option...it seems that the wonder drug Gleevec isn't working too well on the dodgy Leukaemia cells lurking in my body. They will be running a "Mutation Test" to test the effectiveness of the medication in my cells and they'll also consider three things: increase dose from 600mg to 800mg (maybe a few nasty side effects), change drugs to Nilotinib - "Son of Gleevec" and the third option is the Bone Marrow Transplant. I'll find out in the New Year when I'm back next seeing the docs. The docs say "keep your chin up" but after the turkey I've managed to munch in the past week, it's more like "keep your chins up"...

The photos I've attached a just from last week when a group of us (Kas, Mhairi, Bob and I) took on The Cobbler on Boxing Day. We started near Loch Lomond on the Scottish west coast and with our new boots on, we strided on up towards the peak of this highland hill. The views were pretty limited as we spent most of the time in the clouds, mist and snow at the top. Not bad for a few amateurs; zero to 3,000 feet. A nice bit of training for the 20,000 foot monster of Mt Kilimanjaro!

In the meantime, we will continue to press on and look for the positives...confident that we can eventually tame this beast. We have a New Years Party (Hogmanay) at our new pad on Sunday night so there will be a few photos of that night on my next post...plenty of the Karaoke Comp.

Have a great NYE and keep the messages and emails rolling in...

Thursday, December 07, 2006

24. Wizard of Oz






Photos: Matt at Jacobs Creek; My big bro Nick, Claire & Hayden; Kas & Hayden; The Gun Show with Kas, my wee sis Tash and Tam; Group Photo at Jacobs Creek; Mum, Kas and Dad enjoying some wine...

I never thought I was going to make it. I’ve sat on the dreaded London to Sydney trip plenty of times before and experienced the numbness of the journey…but this time I swore the seat in front of me was much closer to my face than ever before. I’m always one for encouraging people to come and visit me in bonny Scotland but I would strongly recommend a few glasses of red wine with your airline meal (can you call it that?) and pop a sleeping tablet to get you through the trip. As I write this, I’m determined to stay awake until at least 9pm tonight and try and sleep past the early 3:30am that my jet-lagged body decided to get me up at this morning. I’m also writing this with a big smile on my face…if I had a glass of champers right now, I’d say cheers to an unreal couple of weeks. Two weeks in Oz with Kas…priceless!

It was brilliant to be met by Mum, Dad, Tash and Grandpa at Sydney airport…my bro Nick, Claire and the wee man Hayden were going to meet us at my sister’s pad. Through all the emotions, hugs and the way you surprisingly tell people the flight was ‘fine’...my thoughts were still about getting my hands on my wee nephew Hayden He was now 6 months old and growing into a little boy more and more each day. I could see that in the photo updates I receive. There was also going to be the time I meet my wee sister’s new boyfriend Justin. It was all going well until we were playing golf and he accidentally hit a rebounded golf ball that flew back off a tree and straight at me… I just managed to dive out of the way! Not too sure about him now…she may have to find a brother friendly boyfriend now.

As you can imagine, I hardly let Hayden go in the week that we spent in Sydney. I’m just glad I finally got to meet the latest member of the Sinclair Clan, it was a bit sad at times too when I knew this was the only time I’d get to see him as a wee baby…part of me prays that my Leukaemia tests will come back fine so that I can see him more often.

My mum had organised a huge family ‘get-together’ at a BBQ site near the Blue Mountains. Surprisingly everyone came and joined in the celebrations, park cricket, cold beer and a chance to see people on this rare occasion. There were relatives I didn’t even know I had (maybe they weren’t, could have been there for the booze!). The only thing that struggled on that day was my Scottish pasty skin when it was introduced to the hot Aussie sun. Not sure why everyone called me Casper

After the farewells, and emotional ones at that, we were back on board my good friend the aeroplane and off to Adelaide to start the wedding celebrations for Drew and Alana. As it was Karen’s birthday the next day, we decided to head out into the city and I could take her out for an early birthday meal before the hectic few days ahead. It was so good just to mill about with my boardies, thongs (or Flip Flops for the Poms), t-shirt and sunnies…even at night, minus the sunnies. The next day was all about the catch up with all my mates, two had even just flown in from UK that morning, and get started on the Stag Do for Drew! What goes on Tour, Stays on Tour: so I can only add that we dabbled in a little Go-Karting, Coopers Brewery Tour, Barefoot Lawn Bowls, a Night Club where I once again tore the dance floor up with my robot moves and then to the Adelaide Casino. I can say that the next day, I was the only one without a booze induced hangover as we all lazed down on the grass at the Adelaide Oval….not too much was said or drunk as we lazed in 35 degree heat and watched the Aussies tear into the Poms. Casper was the call once again though…

Then was it was time to almost get serious and start preparing Drew for the wedding the next day in the beautiful Barossa Valley. More and more people started to arrive for the big day and it wasn’t until a phone call from Drew on his wedding morning to run through his speech, did I realise how much of a big day this was for him.

The wedding was set in a stunning old winery, Chateau Tanunda, in the heart of the wine region. We were set up casually on the croquet pitch, rose petals were strewn from side to side and the sun even seemed to ponder in the afternoon sky in an attempt to see Alana climb out of their 1920’s car. The ceremony was nice and relaxed…I was so stoked to see them get married that day. With the scares of potentially requiring a bone marrow transplant at the same time, I was glad that my body was settled enough for me to come back to Oz and see my good mate get married to Lanski and be surrounded by all my closest old mates…

The remaining couple of days in the Barossa were spent checking out a few of the local, and not so local wineries. My parents flew to Adelaide and then drove themselves up to meet us and enjoy some more quality time before we headed back to the European winter. Jacobs Creek was a highlight, not only because I work for them here in the UK, but that it was our last day together with everyone. We were sampled plenty of free wine and were given a tour around the Winery….not a bad way to finish up.

Then it was back to the Adelaide Airport, said a some more undesired goodbyes and we were back on the flight to Scotland. The only good thing about this flight was the captain’s update as we came into Singapore – Aussie’s won the 2nd Test and Shane Warne is the Wizard of Oz! The trip has been such a good one, extremely busy but definitely glad we managed to come back to a couple of weeks and see and do so many things. As I wanted to keep taking my medication at the same time of day my body has gotten used to, I then had to get used to taking them at night. This made me almost forget out having Leukaemia and I managed to get on with a relatively normal life on my holiday…lucky for mum’s texts at night to remind to take the Gleevec though!

It’s been such a good way to ‘escape’ this dodgy cancer. Even though I know it came with me, it’s more that I managed to escape everything else that come along with the Leukaemia ‘package’…doctors, PCR’s, oncology wards and to some extent my CML Diary (although I’m very happy to be writing in it again). I’m only human; I think I will just need a break from it all every now and again…

Now it’s back to life as I left it a couple of weeks ago – plenty of Scottish drizzle, the busy period at my work, doing what I can to raise awareness for Anthony Nolan and Leukaemia Research…and then back to the docs next Wednesday for a very important PCR test. Fingers crossed…





23. Photo Description


This Diary Post was just going to be a few photos…but after looking through them again, I decided they definitely require a few words to explain how important they are and how much they mean to me. They are all based around Leukaemia Research…each of them displays some pretty gutsy stuff to show how vital it is that people highlight worthy charities and also how hard some people work to make them successful.

The first couple of photos are of my Mum and Dad. They are taken at the Rugby League ground in a place where I grew up, got in trouble and met some of my closest mates (and got in trouble with them)…Cowra. They were there in a way similar to me…it was something they (or I) would never have done before the word Leukaemia started to get thrown about and now they are participating in a huge charity fundraiser. This event was a tough one; each team has to walk through the afternoon and the night, around and around the oval. There were hundreds of people there to raise money for Cancer Research…not bad for a small town. Gusty effort and one I’m proud of them for!

The other photos are from this years Anthony Nolan Scottish Ball held in Glasgow. The guys all arrived in their Scottish man skirts and the ladies were looking very classy in their long ball gowns and dresses. It started off with a bang when trays of free booze started to get handed around…and this set the scene for the night. After an hour of enthusiastic chat, admirable gazes at the ice sculptures and money getting thrown about for the various raffles, 650 people were then led into the Main Hall and seated for a memorable night. We all reminded pretty quickly on the main role of the Anthony Nolan Trust when we were introduced to a man who had donated his Stem Stems for a Bone Marrow Donor. We were all in awe as he was interviewed, shown photos of the very sick 6 year old boy who was the recipient and chatted about how easy the process was. Then plenty of tears started to flow as the 6 year old boy was then introduced to the crowd…he was now 14 and living the life of a normal teenager. I have to admit that the frog in my throat crept in quite quickly as they were introduced to each and embraced for the first time. Gold! It just shows how important donors are!

The night then kicked in and provided all 650 people with an extremely brilliant night…raffles with great prizes, cheer leader show (I closed my eyes!), some good tucker and a band that had me burning up the dance floor when I tried to impress Kas with my best robot moves.

Anyone up for a good night next November?...check out the ANT website!

Thursday, November 09, 2006

22. Tartan Time





(Photos: Edinburgh Castle at Night; More Photo's from Beefy's Walk for Leukaemia Research; 1 year since my Old Man came on his Surprise Trip to Scotland)

As the next countdown begins, another one has finished. Over the past year since diagnosis, it seems that life is now full of countdowns…waiting for the clock to tick down and give me either a result, a break away from it all, another test and occasionally it’s just the microwave telling me that my sausage rolls are ready…

The ‘rogue’ PCR result of 7% that I received a couple of months ago, has been confirmed to have been a mistake. After a chat with the doc, he explained that the test is so sensitive and sometimes due to human error, the result we get at the end can be faulty. This was all confirmed when he told me that the next test came back at 2.3%...not a bad result I thought, but not too good either. As the test before was 1.5%, it may seem that I have plateaued and no longer continuing the decline that we were all loving to see. My appointment was yesterday with the doc at the Haematology Ward, he has decided to continue the Gleevec and monitor me with another PCR test on the 13th December, this time hoping we can see the number dip under 1%. If not, we will then look at other options that will combat the Leukaemia, and that includes the new medication that is only just becoming available for Gleevec resistant patients and there is also the option of the risky transplant. The blood tests were all fine and showing no change to the ‘norm’. It’s funny that if another doctor took a blood test, it would seem like there isn’t anything wrong with me. Not sure what else I can do until the next test then…might have to give the dodgy sausage rolls a miss…

As the time has ticked down to get the latest result, the next thing I am looking forward to is our trip back to Australia for two weeks. Kas and I are leaving the bonny (and very cold) shores of Scotland on the 22nd November and will be sunning ourselves 24 hours later in Sydney. The week will be a busy one, filled with catch ups with family, friends and my new wee nephew who’s getting bigger by the minute…then it’s off to Adelaide and the Barossa Valley for my mate Drew and Alana’s wedding. Hopefully I’ll be posting a few photos of the Aussie boys taking back the Ashes from the Poms after we see the game at the Adelaide Oval.

Until we head back to Oz though, it will be a pretty busy couple weeks. We are heading over to Ireland tomorrow night for the weekend to give some friends a fairly rare visit…we are just needing a trip away to relax. It’s hard when it’s the busiest time of year in my work… the Scots keep buying plenty of booze to keep me in a job though! Then it’s time to don the Scottish skirt and put the kilt with the Sinclair tartan back on again; we will be attending the Anthony Nolan Scottish Daisy Ball on the 18th November. It’s a good way to show our support for such a good and worthy charity, they are expecting 800 people so it should be a good night!

So until the next post when I return from sunny Oz, keep the emails and messages coming in. They are good to read and help keep us in a positive attitude for a future that will no doubt be bumpy at times…

*Kilimanjaro Climb, February 2008 – Anthony Nolan Trust: http://www.anthonynolan.org.uk/index.php?table=event&id=866&parent=3.2.2.1

Tuesday, October 17, 2006

21. Walk with Beefy





Beefy's Walk for Leukaemia Research in Glasgow; Star Struck Matt & Ian Botham; Autumn Mountain Biking in Scotland; Red Arrows Formation at Leuchars Airshow

I thought I'd been managing quite well, keeping the stress away and keeping up with a relatively normal day to day life. I haven't been trying to focus too much on the latest 'crazy' PCR results, attempting to free my mind of thoughts on what it could mean and how these "what if's" could be changing my life in the very near future. It was, however, made fairly apparent that I was waiting the results more than I thought...the email that popped into my inbox was titled "PCR Results". I don't think I've ever tried to open an email so fast...

It only took a few seconds to realise that all wasn't well. Not with me me anyway, with the PCR testing itself. The doc explained that because the test was so delicate, there was unfortunately "technical problems" this time and that they couldn't get enough control gene signal to allow quantitation of the BCR-ABL signal. I tried to use my scientific mind...that didn't work but I did manage to understand that I wouldn't be getting my well anticipated PCR result. So, back to the docs for a fresh blood sample and the time now starts again. Not the news I was after obviously, but it's out of my hands and we'll just have to restart the timer and keep these fingers crossed for a few more weeks.

Ian Botham kicked off his much hyped 'Beefy's Walk for Leukaemia Research' last week and the first leg started here in bonny Glasgow. I wasn't too sure on what too expect and was almost hoping I could hide under the radar by walking a few miles with him and duck back home to my comfy bed as I hadn't been feeling too well. Only when I turned up at M & S in the city centre, Ian was swarmed by photographers, cheerleaders, crowds, helicopters and enough police to hold back a riot. I was then handed a map of the 9 mile (15km) route and after a few snaps, Beefy was off and I was also kicked into action. There wasn't the huge amount of people walking with him as I was led to believe, so I soon realised there wouldn't be any heading off for a snooze but I'd have to keep up with Beefy. Not the easiest thing keeping up a very surreal conversation and pounding through the 9 miles in just under 2 hours. At the end, we parted ways (after hearing he'd raised over £8 million for LRF!)...Beefy with his physio, massage girls and limo...me, back to my car and home for a bath and then a very long snooze...

So as I am writing this there are two things going through my head : 1. It will be 1 year (12 whole months!!) since I was diagnosed on the 19th October...the craziest year of my life! I really can't believe what Karen and I have been through and dealt with in that time. To physically listen to a doctor talk to you, one on one, that you are very sick and that you have Leukaemia will always stay with me forever. Even a year on, it doesn't sit too well with me thinking about that rainy afternoon. I can proudly say however, that I have learnt a tonne this year...I've seen so much bravery, sad stories, grit and a shit load of determination that has left me a better person. Let's hope it's all going well on 19th October 2008! Number 2 : I'm off to see Kenny Rogers tonight in concert, woohoo...bring on the Gambler!!!

Everything is running fairly smoothly and although theautumnn is really hitting us, I've been spending most nights out on my mountain bike trying to stay fit. It'll be a challenge cruising through the snow in the next couple of months though. As I'd mentioned before, my goal was to do a large sponsorship effort every year for a Leukaemia Fund...and February 2008 I was gearing up to climb Kilimanjaro for the Anthony Nolan Trust. I just received a call yesterday that confirmed i had won the Mumm Champagne Adventure Scholarship to help me get to the 6km high African summit. If all goes well and nothing too dramatic gets in my way, I will be starting my training to get myself to Tanzania and climb to the top...bring it on!

Well it's not long now until Kas and I pack our bags are heading back to the sunny shores of Australia at the end of November. Drew and Alana's wedding will be brilliant in the Barossa Valley and I also can't wait to catch up with everyone. I'll also get to see my new wee nephew Hayden...

So for the next few weeks I'll have my fingers and toes firmly crossed, hoping to hear that my PCR has dipped and it'll be all looking good. Watch this space...

Remember to have a drink for me on 19th October!

Thursday, September 28, 2006

20. Roller Coaster

Photo from Easyjet fundraising...
http://www.anthonynolan.org.uk/index.php?table=pressrelease&id=165&parent=0

I’ve been hoping this rollercoaster we’re on will just keeping on cruising along smoothly and we wouldn’t have to hold on too tight. I’d actually much prefer if I was the one not on the rollercoaster, just like I used to be, an innocent bystander holding the bags. But almost as expected, we’ve got to the top and the ride has to get a little bumpy before it smooth’s out again.

I know it reads a bit weird, I’m not one who usually looks at real life as a metaphor…but the bizarre news I got this week has only left me feeling that this Leukaemia experience is just like a crazy ride.

I had reported late last month that the great news had finally come my way – my PCR test had dropped to the ideal 1.5% and my bone marrow biopsy and FISH test came back negative. Great to see the Gleevec is kicking in and giving us a bit more hope! Only thing is, my regular monthly trip to the docs has left me more than a little confused…I got to hear that my PCR levels were now back up at 7%, and as you can imagine, it’s left me feeling a bit numb. We are hoping these new results are just a blip in the testing machine, as my PCR has been falling consistently since last year – and with a negative bone marrow sample, the results seems crazy. Also it’s crazy because this PCR test was done only 5 days after my 1.5% result came back to me…

So I’ve had another PCR test taken this week and those results should be with me in 3-4 weeks…it seems so long to wait to hear if the last test was a mistake! If it’s not a mistake, and the latest tests confirm the worst news we could hear, then it seems the only way to combat a Leukaemia relapse is to go straight in for a bone marrow transplant. This is a battle which I’m willing to take on but also something to be avoided if the drugs are working well in my body. As usual, we will keep 100% positive with which ever path we are led down and keep fighting these dodgy cells that won’t piss off out of my body.

Other than my metaphoric nightmare right now, everything seems to be going really well. We moved into our new pad on time, it’s been so good to move into a house together than we love so much. It’s also close to some very good mountain biking tracks which I’ve been trying to conquer lately. I’m sure I’ll fit into the biking scene eventually even though my bike almost came apart piece by piece on my first outing…

The aussie’s keep flowing into the bonny lands which is good to see. We had a great trip to Newcastle on the weekend when we went down to watch the rugby, Falcons v London Irish with a few of the guys. My mate Damo also came on down as he was over visiting the cloudy country for the past few weeks.

Also, check out Beefy's link on the right. Ian Botham (English Cricket Legend) is doing a huge fundraising effort in the UK to raise millions of pounds for teenage and young adults with Leukaemia (I'm still young!). I'll be helping him out on Monday the 9th October, so go online and check it all out...

Fingers crossed I have some good news to report soon about the latest results in the coming weeks – the 7% PCR still doesn’t add up, so let’s hope the latest test done today will fill in a few pieces of the puzzle. Thanks for the messages and emails – they’re brilliant, keep them rolling in!

Monday, August 28, 2006

19. Hit The Road






Pedal For Scotland - Mhairi, Bob and I; Me on Bike; Heading off to Edinburgh from Glasgow
Berlin - Kas at Brandenburg Gate; Kas and I @ Gendarmenmarkt

On the odd occasion, I have found that the saying 'no news means good news' can be a fairly true statement. With my increasing energy levels, not so pasty white skin (scottish summer) and my blood results getting better each time, I was keeping my fingers crossed to hear that the wonder drug Gleevec is finally getting through to my dodgy cells and giving me some PCR and Bone Marrow results to be happy with.

After a brief chat with the Professor, she explained my latest results to me...the 9 month tests I have been waiting 4 weeks for! Good news is that my PCR results have dipped from 7% at 6 months, 5% shortly after that and now down to a nice 1.5%...I've cracked the 2% mark we were aiming for! Then we got into the bone marrow results. As you can imagine I was very stoked to hear that it is now undetectable...this test only tests about 20 cells and when I was diagnosed last October, I was Philadelphia positive (or 100% Leukaemia cells). So it's very good news to hear that I am now negative and have achieved what's called 'cytogenic remission'. This sort of result will give the docs a much better understanding of the disease and a much greater chance of survival and remaining in remission...

This good news comes on the back of me completing my Glasgow to Edinburgh bike ride yesterday - Leukaemia Research's 'Pedal for Scotland'. The day was quite a nice to start with when I woke, closed the curtains to get changed and within minutes it was bucketing down. This set the tone for the whole day; 4 seasons in 1 hour - literally! We (Mhairi's dad Bob, Mhairi, Col's sister Suzie and I) set off across the bonny country from George Square in Glasgow and 3 and 1/2 hours later, we were resting our sore arses in a park behind Murrayfield Stadium with thousands of other mad cyclists. It was just good to relax after the big trek and munch on a piece of fruit that Col organised for everyone - he struck a deal with Waitrose to provide a banana for everyone doing the ride. It's huge effort and it's something I know Leukaemia Research were very pleased with. Not sure what he did in return though.

The only silly thing that happened that day (very silly) was on the way back home...

With Julie, Mhairi, Kas and I in the car cruising back to Glasgow, I noticed that mine and Mhairi's bikes were bouncing more than usual on the bike carrier. After 10 miles into the trip, I was taking a quick glance in the mirror and only noticed only one bike on the back of the car...one bike - holy shit! I was in the right lane, veered across to the left and screeched to a halt on the hard shoulder. Unbelievably the second bike was just dangling precariously on the back, clinging onto the other by a tiny bike chain. I had only wrapped the bike chain around them both when we went for lunch in case someone tried to knock them off - now one was hanging one the back, ready to drop. We could only imagine what would of happened on a busy motorway yesterday if it wasn't for a few links of metal. Gotta laugh though and thank the bike gods for looking down on us...

Berlin was a much needed break last week with Kas. It was a fairly quite getaway - milling around the Berlin Wall, wandering the capital's streets and munching plenty of stodgy German food. I wouldn't imagine it's a haven for vegetarians...meat and more meat, sauerkraut and potatoes. Love it!

Now it's back to keeping focused on keeping fit - mentally as much as physically, to keep ahead of this dodgy disease. I will now be talking to the docs about my transplant options and what the latest results mean for me in regards to treatment. Good news is that the next phase of CML drugs are going through licensing, giving people with Chronic Myeloid Leukaemia a few more options.

Thanks for all the comments and emails, keeping them rolling...

(Happy Birthday to my bro Nick - happy 30th mate!)

Wednesday, August 16, 2006

18. Waiting Game



Loch Ard camping trip in bonny Scotland...

Who ever invented the saying 'no news is good news'? I wish that was an accurate statement, it's something I've found myself saying a few times lately.

My PCR and Bone Marrow tests are still in the test tubes in a lab somewhere, I'd imagine I'll be waiting a couple more weeks before I get a call from the doc to give me the updates....the 9 month updates. So no news to report just now (which hopefully means good news), I'm just hoping I'll have some results around the corner to give me some direction of my next step in the CML story. Transplant or meds?!

The training is still going well for the big bike ride to Edinburgh from Glasgow. I've managed to stay on my 2 wheeled beast so far and haven't had to put my dodgy helmet into any use just yet. I'll keep peddling around the streets for another week and a half, keeping an eye out for little old ladies and dogs. I think my bike has a dog magnet! So once again, a couple of weeks and I'll have some updates and a few more photos...

It was a strange feeling the weekend that just past...it was the weekend we originally planned to get married on. The date was booked before I was diagnosed and as there was so much uncertainty on what the year ahead would hold for us, so we moved it to earlier in the year. Kas and I are so glad it went ahead in March... would have loved to do the honeymoon again though!

So in the meantime, we head off to Berlin next week for a quick break...the calm before the storm! A nice trip would do us good before all the job changes, moving house and still dealing with the usual dodgy disease that won't seem to piss off. It's even worse than the annoying guest who comes for Christmas and never wants to go home...

(If you ever want some inspiration or feeling down... check out this young fella's website http://www.jaysjourney.org/ - unreal!)

Tuesday, August 01, 2006

17. Options


- Ouso pushing his bike up the hill, over looking the Loch

So far the standard blood tests have come back to being fairly normal which means Gleevec is doing some good work. The tension seems to slowly release as the appointments go from weekly, to fortnightly, recently 3 weekly and now the sigh of relief for the routine tests to go monthly. It's good to know that the docs aren't too keen to see me too often and it's good to give the veins a rest. Only problem now is that I'm leading myself down road of disillusion...there are far more days now of feeling normal. What a reminder these monthly tests now are...

With the news that my PCR test results weren't coming down as fast as the specialist would like, the words 'bone marrow' and 'biopsy' started getting thrown around once again. I was surprised to hear that they gave me an option to have the knitting needle shoved in my hip bone...for me, the option was to get it done and give the docs a clearer understanding on what’s happening in my swelling body (can't say no to a good burger). Also said 'yep', so I can have a few days off bin and dishwasher duties.

Quality of life is very high for me right now - and that's exactly what Gleevec gives you, but for how long?... so the prospect of a gruelling Bone Marrow Transplant has stayed firmly in my mind. The doctors and specialists are still split 50/50 on what option to take but the longer I go on, the more I lean to the BMT. Not an easy option for anyone though...

The weeks seem to roll pretty quick lately. I've kept my head down and have been working as hard as I can which is probably the reason for the 'hour and minute hand' spinning a bit faster. I've just jagged a new promotion at work...as you can imagine I'm pretty happy, but I'm also extremely happy with my employer. They've stuck by me the whole time now and this show of support is brilliant.

Dawsie, Ouso and I decided to brave the midgies recently and head up north for a spot of camping and mountain biking. The weather was quite good for the bonny lands, the bike tracks were hard enough and the beers went down quite well on the boat we hired to cruise the local loch. Lucky that I managed to catch the motor though as it slipped off the back when we were in the centre of the loch...the boys must have been fooling around.

My work continues for Anthony Nolan Trust...can't say enough good things about these guys. They keep on working hard every day, praying that the work they do will find a match for someone in need of a transplant. Karen's Nana and Papa's recent 60th wedding anniversary managed to raise a healthy total of £800 for the Trust from their friends and families donations. As I've already done my yearly fundraiser (confirmed total of £3,437.82 including Gift Aid - for Leukaemia Research), I'm keen to get something sorted for the following couple of years...maybe a bike ride, parachuting or climbing Mount Kilimanjaro in Africa (once again, mum and Kas not too keen).

Drew's (my mate getting married this year) sister Sarah has also done some great work lately for finding new bone marrow donors...she had organised for the local donor unit to come across to my old Rugby Club in Cowra, Australia and sign up 16 of the local players. I hear there is another in the pipeline...such a good effort from Sarah (thanks!)!!

So until I need to make the big decision on which way my treatment goes, I will keep on training for the big bike ride this month. The Glasgow to Edinburgh 50 mile (80km) ride is on the 27th August - it snuck up on me quite fast! I'll soon have to don the ice-cream bucket helmet, boardies and shirt and hit the roads for Leukaemia Research.

Until then, fingers crossed for my 9 month PCR test tomorrow morning...

(It is with a heavy heart...wee ^^Skyler^^ has earned her angel wings yesterday after a long fight. Please visit her page and leave her family a message
www.caringbridge.org/visit/skyler)

Tuesday, July 11, 2006

16. Cycle Time







Advance Australia Fair - Ant, Dawsie and I before the Aussie v Brazil World Cup Match
Scottish Sunset - 10:30pm
Inspirational - Karen's Nana and Papa celebrating their 60th Wedding Anniversary at our house
Bournemouth - Jen, Kas, Ish and Amy on our trip last weekend to the English South Coast
St Andrews - Me overlooking the 1st Green at St Andrews Old Course

The morning wasn't the nicest, but when we turned up for the start of the Anthony Nolan bike ride up to Loch Lomond the clouds seemed to part and let the sun light up the track. Most cyclists were donning the skin tight bike shorts, shirt and aerodynamic helmet...I felt slightly out of place milling around in my boardies, t shirt and 'ice cream bucket' bike helmet. Funny how I only drew attention to myself when I decided to look like a 'cyclist', pull the pump out to give the tyres some air and accidentally let them all down when the tube wouldn't click on... It was a good day regardless! Mhairi and I cruised up in a tidy 1 hour 45 minutes, not bad for an Aussie with Leukaemia...

The week leading up to the ride had been pretty hectic too after finding I had a matched bone marrow donor. The story in one of the Scottish papers spoke of my good luck in finding a donor and how easy it now is to become one...all good press for my cause. I was then surprised to hear Scottish TV calling me up to run something on the night's news, just before the Aussie World Cup match! They took some shots to run over the story, one of me on my bike that made me realise I needed to put the handlebars up (looked like a giant riding a kids bike)...then they shocked us by announcing it would be a live broadcast from our pad, just me and Kas with earphones and live questions from the presenters! It then followed by a request to talk with BBC Radio on becoming a donor and the ride I was about to undertake. Funny stuff. The work has now dried up, I hope I'm not a has-been!

Anyway, here come the PCR test results (very sensitive blood tests) that got given to me today. As I was at a lazy 7% at 6 months, the reason I had this latest test was to see what would happen if I stopped my other medication. I have only come down to 5%... Still not the result the docs are looking for (and me) but it's good to see it is still moving in the right direction and the number is getting smaller every time. My 9 month test will happen on 19th July so fingers crossed it keeps moving down. The burger diet may be slowing the medication process down a little...

Since then, everything seems to be speeding up and leaving me with less time every day. I've been putting my head down and working as hard as I can...I've been trying over the past couple of months at work to lose the tag of 'Matt with Leukaemia'. I think it's starting to show that I can still do everything I did before, even though I get a little more tiredness, but it's important for me to still hit the targets set out for me. Work seems to keep my mind off everything else and is giving me a real focus, something to look to the future for.

Good news for the Sinclair Clan is the arrival of my brother Nick and Claire's little baby boy, Hayden William Sinclair. He's a good looking little man, takes after his uncle in the looks department (hung like his old man) and is doing very well...

We have also become proud owners of our first house! We had been interested in Karen's Aunt Liz's house in Glasgow for a wee while now and after the offer went in on Friday, it has been accepted - leaving us with a set of keys to our new pad! I'm really loving that Kas is as happy as I am to move forward with our life together...it means alot to me that we both are as positive as each other and that we can both see the best out of any situation. We will hopefully be moving end of August or early September...only happens to be the same time we have booked a trip to Berlin for a few days, my bike ride from Glasgow to Edinburgh and shortly followed by Karen's commencement of her new job. So some good news with the PCR tests will make these coming months a little easier to handle.

I'm due in for another hospital check up tomorrow. This will give me my blood results and I'm sure it'll progress into a discussion on whether to go ahead with a transplant at this stage. The Gleevec (CML meds) results seem to be getting better by the day but although there are significant risks in a transplant, it's hard not to think of what life would be like with a cure. Imagine being able to look back at life and say 'I used to have Leukaemia'...

Friday, July 07, 2006

15. Wee Nephew






Photos :

- Claire with my new wee nephew, Hayden William Sinclair.
- The little fella - born 7 pound 2
- Having a snooze
- The Generation Gap - Grandpa, Dad, Nick and Hayden

He's a cute wee man, obviously takes after his uncle....

My updates will soon follow, just awaiting some more results...watch this space!

Wednesday, June 14, 2006

14. Lucky 13


(Engaged - Drew & Alana, Jen and Dawsie)

I kicked off my last post hoping to report the progress of my Bone Marrow donor and I was also hoping to prove that 13 isn't always an unlucky number. It's funny how irony has played a part in the last 8 1/2 months...

On a busy M8 motorway between Edinburgh and Glasgow, my car was full with my boss and the stench of Glenlivet after a busted bottle (gotta love the airport luggage handlers). We were heading back home after a rather productive day on the road and as usual my phone started ringing...the display read 'call' so I assumed it must be a drunk aussie mate giving me a call in the middle of their night. With my boss in the car, I decided to let the message bank kick in and opted not to let him hear the boozy slur. I picked up the phone and listened to my message, clearly expecting a chuckle...

The message I received was something I'd be waiting a long time to hear but still caught me off guard - I'm not at all impatient with the docs but very keen to hear about my bone marrow news. After the initial chat about a DQ antigen mismatch...righto, what on the earth does that mean?? I started probing and persisted with the questions. I knew that the Professor wouldn't recommend going down the transplant route if the match wasn't at least an 8/10. My matched was confirmed that I have a possible 9 1/2 to 10/10 match! All of this news was being taken in on the 13th June. Not a bad number...

I had my PCR test (very sensitive blood test) taken today at the Glasgow hospital. After my relatively slow start (14% at 3 months - 7% at 6 months), this PCR test will hopefully fill the doctors in with what going on with me and how my body is reacting to Gleevec. The key for the specialists is to gain the maximum result within 12 months as this will determine alot of things, including life expectancy. It's just a good feeling to know that I have options now and a Bone Marrow transplant may be a road we go down. The results will be back within 3 weeks and this will hopefully make things a little less hazy for us...

The training for the Glasgow to Loch Lomond Bike Ride is going well - the ride is on Sunday 25th June so this should be a good starter for the Glasgow to Edinburgh Ride I've somehow put my name down for. 50 miles seems like a fair hike, even more so as my rides haven't taken much further than Greggs pastry shop and the hospital for the random test whilst I pi*s off a few bus drivers as I hog their lane. I have had a few stern words from my wife and mum, therefore I've donned the helmet and attempting to stick to the cycle lanes.

The Australia trip has been all sorted - booked and paid for! I just can't wait to go home for a couple of weeks and soak up some December rays. Drew and Alana are getting married in the Barossa Valley (wine region just outside Adelaide - near Jacobs Creek) and it's somewhere I've never been. Will be good to watch the Ashes and hopefully we can snatch the beloved trophy back off the poms - but most of all, I'm really looking forward to seeing my family, mates and my brother Nick and Claire's new wee baby that is due in 2 weeks!!

So right now, I'm a happy man. I've finally got some results that have stopped the string of bad news we seemed to be getting used to. The entire time we have remained 100% positive and were sure if we remain like that, we will eventually be met with some news that'll give us a big boost. The route we take still may be with the CML medication Gleevec but it's just good to know now that there are now options...

(Go Australia in the World Cup! - as I write this, Aussies are top of the table! May not be for long until the Brazilians get hold of us...)