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 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 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 - 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 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