41. Eagerly Anticipated

Photos (Dawsie's Bucks Weekend) : Malcolm, Dawsie (Borat) and Me; Drew; Me and Dawsie; Passed Out with the Horses; A few of The Boys dressed as 70's Pimps...

Still no news as yet...

I didn't realise how tiring it can be when you're anxiously waiting on something you find important! Kas is doing really well, still keeping active, no yelling at me (just yet...) and generally keeping positive about everything. There is only the odd occasion that I see it all building up inside her and she releases very calmly and gets back to the job at hand. That's my girl!

The official due date is this Friday and they say it can happen anytime now. Hard to believe that my next blog post will be of the new arrival. I'm hoping that I don't become the baby bore, so I'll stop with the baby chat now...at least until it arrives anyway...

I've also got the eagerly anticipated PCR test due this week as well. It's all happening. As you can imagine, my fingers are still crossed in the hope I can continue the downward trend and have a result that drops below the 1% mark for the first time ever. This next blog post will be a busy one indeed!

Then if that wasn't enough on my plate, I've just come back from my mate Dawsies' Bucks Weekend to the Lake District in sunny England. Such a good time had by all the 20 blokes who all dressed up at "70's Pimps"! After confirming with the House we were staying at that their definitely is mobile phone coverage, we set off from the bonny lands and off to England to live the weekend that I organised months before. When I arrived, I was very thankful to see that I did indeed have the promised mobile coverage - I was on call for baby duty! As most people are aware, 'what goes on tour, stays on tour' is the Bucks Weekend motto so I won't be sharing any stories....only that Dawsie was fast asleep by midnight and we literally had horses from the surrounded paddocks munching bread from his Borat swimsuit that he was only permitted to wear...

The big day is this weekend - Jason (Dawsie) and Jen's wedding at Solsgirth House, Scotland. It's a beautiful, old, family owned place and somewhere I cannot wait to visit tomorrow night when I head up there for the rehearsal. Again, I am on call for baby duty if the wee one hasn't arrived by then. Hopefully I will at least be able to get through my speech and give the oldies in the room a few horror stories from when he was a young fella growing up with me. Kas is hoping to get up to the House to at least see the ceremony - she hates missing out on anything!

It's just been great to be able to see my good mates Drew & Alana while they're over here for the wedding - nothing like catching up with your old friends! It's been good to see them again and getting on with things as though we only saw them yesterday. My other mate Damo from Australia is also over here as well...to get a piece of Oz when you're living in another country is priceless and something I definetly don't take for granted. I've always been one to make the most out of every day and every situation. Let's just hope the Wallabies keep up their good form in the Rugby World Cup!

The next update won't be far away - what goes on between now and then will be some of the biggest weeks of my life! To be kept update on this blog without having to keep check up from time to time, just add your email address on the right of the screen in the 'Email Subsriptions' section. Easy...very nice!

Thanks again for all the emails of support and best wishes - to see visitors from all around the world checking out this blog is gold. G'day to those checking out my site from Australia, USA (incl Alaska), UK, Ireland, Taiwan, France, Spain, Saudi Arabia, Greece, Czech Republic, Bosnia, Chile, Canada, New Zealand, Malaysia, The Netherlands, Indonesia, Italy, Switzerland, Portugal, China, Brazil, Turkey, Germany, Israel, Egypt, Austria, Singapore, Tunisia, Hungary, Belgium, Korea, Finland, South Africa, Japan, Kuwait, India, Denmark, Bulgaria, Serbia & Montenegro, Guatemala, Hong Kong, Pakistan, Jordan and the Faukland Islands...

40. Three Log Reduction

Photos: Kas nearly due; Start of the climb up Ben Ime; Up the Steep Part Through the Fog; Huddled at 3,100 feet; Back down the sun comes out; Gav soaked; Waterfall after the Rain; Back at the Bus...

It took a few encouraging words from the doctor for me to realise that I had a good result in my hands. In my head, I had somehow convinced myself that if I felt good it would mean my PCR had dropped down quite low and that I had erased even more CML cells from my system. I’m obviously aiming for total eradication. After ten full months of a consistent 2.5% result, worries from the docs and a few fears of my own thrown in, it is great to see it now heading in the right direction…

My first PCR after starting Dasatinib in June this year was officially recorded at 1.6%. The latest one received from my consultant last week was 1.2%...six weeks after the 1.6% came through. It shows a few things, positive and negative, depends on how you look at it – I’m heading in the right direction but quite slowly and the other is that it has more than halved since being stuck at 2.5%. If it continues to drop slowly over the next few months, then I may finally achieve an acceptable and very stable result. I guess there is so much emphasis placed on these tests because of the Drug Company’s 5 and 6 year long term survival data. They say that if you can achieve a 3 Log reduction (100% at diagnosis to 10% = 1 Log Reduction; 100% to 1% = 2 Log Reduction; 100% to 0.1% = 3 Log Reduction) you will have a much higher rate of survival than those who fail to achieve this goal. It’s sad to think that even 5 years ago, most patients would only have 4 or 5 years to live if they never had a fully matched bone marrow transplant. CML has certainly come a hell of a long way since those days of harsh treatment and chemo – the majority of CMLers can now lead a relatively normal life. I say ‘normal’ but who really knows what this means?

So the goal is to obviously reach the goal of a 3 Log Reduction. I’m trying to think of a relevant metaphor to place more emphasis on it but I think you get the picture on the importance for me…

Now back to the ‘normal’ life chat. It’s great to see that Gav has continued to inspire the team and send us up more mountains to conquer. The latest one had me acting surprisingly negative! We decided to take on Ben Ime in the Scottish West Highlands last weekend, a day that started out pretty wet, too wet for an Aussie I thought! As we neared the Munroe, the rain had increased in intensity and completely blocked our view of the surrounding Loch Lomond and scenery. It wasn’t much better when we arrived there either…it took us at least an hour just to make it up a few hundred metres, over a fast-flowing river and a few pit-stops to sort out our saturated gear. I was ready to throw in the towel then but thought I was just being a precious Aussie, afraid of the wet weather. After a few hours of trudging through the water-logged ground and up a pretty steep rocky and slippery embankment, it was then that the dense fog decided to join in the fun. Finally we reached the peak where we huddled in tight, munched our soggy sandwiches and took the picture of us looking thoroughly pissed off. Then it was the descent. The dense fog had by then become so thick I could hardly see my feet, the wind had also picked up so much I thought I was walking in the eye of a tornado and then I saw something that defies all laws of physics – hail stones were blowing up the side of the hill! Thinking of the BBC news reporter that morning talking about teenagers that were lost in the Cairngorms, I turned back to be met by a huge blanket of whiteness and not a person in sight. My thoughts then turned to calling a rescue chopper to get us off the mountain. Eventually we all met up again, yelled a few random words of abuse at the hill and then slipped and fell our way back down to the mid-point of the Munroe, where we then saw the fog and mist being completely blown away. The views were pretty spectacular but I was far more focused on getting my cold arse back into a heated car and back home for a hot shower. We all made it back thank god, peeled off our drenched walking clothes and headed home for Glasgow – it was only when we arrived home that the sun decided to show its face…

Everything else seemed to be cruising just fine. Kas has commenced maternity leave now and is trying to get in a few weeks of rest before we endure the sleepless nights that everyone insists on telling me about. Actually, that’s pretty much all I’ve heard about – getting through the babies first 6 weeks of life. It does sound pretty tough I’ll have to admit but I really can’t wait now. Feels like Kas has been pregnant for years! I’ve also heard about this ‘nesting’ thing that women go through – I’m sure Kas has been like that since I met her (5 years ago on the due date incidentally enough).

Gav’s wife Natalie also organised the Royal Bank of Scotland’s Ball that was held on the weekend – I was so stoked to hear that she was doing it all for the Anthony Nolan Trust. Unfortunately we couldn’t make as Kas wasn’t too keen on bopping the night away with big pregnant belly. From what I hear, the Ball went extremely well and they even managed to raise over £5,500 for the charity. Unreal!! The official Anthony Nolan Trust Scottish Daisy Ball in Glasgow is almost on too – we attended the Ball last year and it was so good! This year my work, Pernod Ricard, are backing to the Drinks reception and chipping in some booze for the event. It’s great to see so many people backing the enormously worthy charity!

So I’ll be back to see my Consultant at the Beatson Oncology Centre again next Tuesday – this is the 3 month PCR test since commencing my new drug Dasatinib. The big one (I know I keep saying they’re big!). This one really needs to be under the 1% mark! Fingers crossed anyway….

*Sad news today in the UK is that Jane Tomlinson has died. She’s the woman who was diagnosed with Breast Cancer seven years and since then, raised £1.75 million for Cancer Research including Marathons, Iron Man Triathlon UK and even the huge 4,200 mile ‘Cycle Across America’ campaign…

http://news.bbc.co.uk/1/hi/england/west_yorkshire/6976050.stm

39. Ben Lomond

Photos: The Boys at the bottom of Ben Lomond; View over Loch Lomond; Getting higher; Getting Steeper; Reaching the Top; Quick bite to eat at the Top; Gav enduring the wind; Back Down for a Pint and Curry; Dawsie after he fell asleep at the recent Annual Golf Day...

Waiting seems to be the main thing to ever happen lately. I’ve always made the most out of using waiting time wisely, just get on with normal life and playing the hand I’m dealt. It’s hard to stop being dominated by the next bit of news or something you’re looking forward to – what’s that saying again, life is a journey not a destination? While I really have been making the most of my time, there are still plenty of things to keep me focused and aware of what lies around the corner…

The latest blood tests continue to see improvements from the dodgy ones I received in hospital a couple of months ago. On paper, my blood results look healthier and more normal than Kas, who is just short of 8 months pregnant. Besides my pale Scottish-looking skin and my ever-thinning hairline (my head must be too big for my hair), I don’t think much would give away the fact I’ve got CML. The only thing that will tell me for definite how I’m really going is my latest PCR test, taken last Tuesday. This is the big one – 6 weeks on Dasatinib (Sprycel). As I touch wood, I can say that I do feel so much better and that I am expecting a better result that last. That may be the kiss of death but one must remain confident. In a fortnight’s time, only the result will tell me for sure.

And if there’s news of me getting a sub-standard PCR test, the docs have just told me of a life-line in the form of another potential bone marrow donor. They’ve done the investigation (thanks to all of those who joined the register) and the computers have searched the world wide databases – of the 8 million listed, there seems to be one other person with a 10/10 match to me. Another Matt Sinclair somewhere on this planet…what a blessing, there’s a very lucky lady out there! The docs haven’t said much yet about this donor but I’m sure they’ll have more information for me in two weeks time

Thanks for the well wishes regarding Karen’s Papa Andy who passed away last month – the family are doing really well but obviously still missing him. I was impressed with my brother-in-law Gav’s (sounds too formal – he’s just my cheeky mate) attitude after the sad news settled with him. He rounded the boys up and inspired them to stay out of the pub for the weekend and to climb up one of Scotland’s highest hills – Ben Lomond. Unreal! The mountain that stands proudly over Loch Lomond and looming at well over 3,000 feet was to be the destination for the boys. If the drive up the east of the Loch wasn’t stunning enough, the walk that met us was phenomenal. Most of the Mountain Guides recommend a 5-6 hour round trip, so with that in mind we set off cautiously through the winding tracks and gained altitude at a very rapid pace. Within twenty minutes, we were all working up a healthy sweat and starting to reach a height that could deliver some decent photo potential. We pushed on through the gusty winds and managed to stay on the designated pathway towards the summit (funny, it sounds as though I’m climbing Everest)…anyway, regardless of the mountain height difference, it was a gutsy effort to the top where we met by some views that could only be described as extraordinary! It really annoys me when people say “words just can’t describe it”…the Oxford Dictionary contains over 170,000 words, I’m sure a there are a few words they can use. Enough of my gripe…the scenery that is visible from Ben Lomond is so good and well worth the effort to the top. I may have to write a strongly worded letter to all these Mountain Guides, as we all managed to conquer this peak in four hours exactly – not bad for a bunch of us pint swigging amateurs. Bring on Ben Ime in the southern Scottish highlands next weekend!

As the Scottish summer (don’t think we had one, I think it’s a myth) comes to an end and the Edinburgh Festival draws towards it’s final day, it’s a stern reminder that next month we’re due to have our first child. I really can’t wait! I’m also realising how precious this last month of pregnancy is to Kas after she had a few scares in the past week – I will certainly be breathing a huge sigh of relief when she finishes up with her work and commences her maternity leave.

Then it’ll be the arrival day – this will mean a completely new way of existence and living. Maybe I’ll have to slow down a bit and stop roaming the Scottish highlands…well at least until our kid can fit into some walking boots and join me. I’m really keen to see Kas as a mum as well. With the creation of our very own family just around the corner, it’s more inspiration than anything else to keep positive and continue working hard to beat CML. We’ll pretty much be non-existent socially as we will be looking after a baby for the first couple of months, we’ve then got Dawsie and Jen’s wedding (and Buck’s weekend), CML Conference I’ll be speaking at in November, my sister arriving in the UK and then it’s off to the Anthony Nolan Trust Ball the weekend after. Bring it on!

I’ll also add the part about our Annual Golf Event that was held last weekend in Edinburgh – twenty blokes, a new location every year, one charity shop green jacket awaiting the winner, one pink cardigan awaiting the loser and a second round of golf filled with so much booze, it’s amazing anyone was standing after the day. Actually, not too many were. A great day enjoyed by all, even though it felt like we were playing somewhere near Artic Circle, and even better to know that I evaded the pink cardigan once again after a Tiger like round from myself (Tiger when he was four). Already looking forward to next year…

Until the big PCR and Donor results that I’ll be receiving in a fortnight, keep the emails and messages coming in.

38. Sun Dance

Photos: Newly pregnant Lorna with Colin and myself; My mate Ish with the world's largest coffee; Karen and her Papa Andy; Karen's mum Anne and Andy...

What a month. As usual, we’ve had to keep on our toes and ready to take on the next challenge that’s thrown at us. Most months we’ve dealt with things quite well, taken it on the chin and got on with it as soon as possible. I’ve never been one to dwell on things too long. But this one seems to have been more emotional than others.

It’s easy for people to feel their own problems to be more important than the next – that’s just human nature. It’s so easy to get caught up with what’s in front of you and you could be forgiven for losing sight of what others have to contend with. I know I’ve been guilty over the past couple of years of this…it’s only occasionally I have to be reeled in and be reminded that there are others in a much more precious and worse off situation. It’s also fact that everyone doesn’t deal with similar situations in the same way. For a few good reasons, this month has been a bit of a learning curve and an eye opener…

I’ll start off with the news of my latest PCR. I never expected anything from my test – the blood was drawn only after I’d had 2 weeks on my new meds (Sprycel) and a week off as I was in hospital. If anything, I was expecting a steep rise that we would have to catch up with. But, surprisingly, the news was pretty easy on the ear. After being “stuck” at around 2.5% for 10 months, it was great to hear that this PCR test came back at 1.5%. I knew the meds were 400 times stronger than Gleevec but I still didn’t expect a change! And it wasn’t me thinking in pessimistic ways, hoping for a good result so as I don’t get disappointed…I genuinely thought we’d have a battle on our hands. I was, however, sternly warned by my Consultant not to get carried away with this result and for me to continue to keep my eye on the ball. She wants to see a bigger result than this (obviously)…so we need the 3 month PCR test to be back at 0.9% or lower. The levels are heading in the right direction, which is great but I also need to keep willing it even further down.

As my last post mentioned, the docs will be conducting another search for a suitable bone marrow donor in case I don’t fair too well on the new meds. Since then, I received a great email from a guy in the Orkney Islands who had organised for the Anthony Nolan Trust to come up to them and host a Donor Clinic. They would have been happy with 20 people…but they managed to get well over 100! Such a great result for a small community. I’m in awe of work like this – as I said before, it’s very easy for other’s to get caught up in their own issues and feelings. This guy did this event off his own back – at least now I’ll have another 100 potential donors for my search. I’m stoked at some of the things people have done my cause since diagnosed in 2005…(even my father-in-law who went to collect a pizza yesterday, ended up giving blood at the local “Blood Bus” while he was out).

I’d hate to be left without a donor, not do well on my new meds and miss out on any precious time with my wife and my wee one due in September. A thought I push to the back of my mind quite well but still a thought that can surface occasionally. With work like this, hopefully I can lose this thought all together…

On top of all this, Karen’s Papa Andy unfortunately passed away last week. Such a great man – with a big friendly smile, a glass of whiskey in his hand and a lot of love to give for a “hard” man, there wasn’t too many people that he didn’t get on well with. Only two months before, he was the “go-to man” burning up the dance floor at his grandson Gav’s wedding, more than me (only just!)…and it was very sad to see that his time was up. I’ll always remember Andy for a Scottish accent thicker than any I’ve ever come across and the way he sang “Waltzing Matilda” at any family event to prevent me from home sickness. So heartbreaking to see him miss the birth of his first great-grandchild by only a couple of months – I think that is what has hit Kas pretty hard. She had a lot of love and respect for him. What a legend…he will be sorely missed by the many people who attended his funeral yesterday…

So, as you can see, it’s been month to keep us on our toes. I’ve also managed to keep myself busy with my work, getting my fitness back and doing the Scottish sun dance. After playing tennis a week ago, I know I’ve got a bit of work to do to get anywhere near where I was before Pneumonia (fitness that is…not waiting for the clouds to part). My fortnightly appointment has also thankfully been moved to every 3 weeks. I’ll be back to see the docs on August 7th for my very important 3 month PCR test – the big one! Hopefully by then, they’ll also have some news on the worldwide donor search. I may even get matched up with an Orkney Islander now…

Thanks again for the messages and all the emails! Well done to my good mate Ouso too, who completed the London Bikathon for Leukaemia Research last week. Good effort mate! Happy Birthday also to my sister Tash...27 last week, she's catching up! Happy birthday wee sis.

* Never too late to be a Bone Marrow Donor – they’re all desperate for young fit blokes (sounds like a few girls I know…) Check out the links on the right of the page!

37. A Wet Wimbledon

Photos: Kas & Bump; Kas, Ish and Amy in Glasgow's George Square; Matt & Ish; My Backyard still light at 11pm...

Let the count down begin. As I slowly gain my strength and get over the Pneumonia, my hospital visits have remained at a weekly frequency. It’s a big difference to the monthly freedom I enjoying last year whilst I was munching Gleevec. Hopefully as I progress and get myself back to full force, I will be extending my visits to the new Beatson Oncology Centre in the West End from weekly, to fortnightly and then back to twelve trips a year. But before I get ahead of myself, my attention needs to remain fully on Desatinib. I’ve just been told that I have six months for this treatment to work…if it doesn’t, chances are we’ll be heading down the transplant route…

The change over from Gleevec to Desatinib was about six weeks ago…because of the Pneumonia, I had to stop my meds for a week in hospital. The time restarted because of that – that means I’m about 2 ½ weeks into the new treatment. At the 3 month point, a PCR will be done to determine how well I’m getting on and at 6 months, the CML will have needed to drop from the current 2% to 0.2%. My consultant is quite confident of this, as am I, due to the fact I reacted quite well to my old meds and I don’t have a mutation (in the bloods that is…not me turning into a zombie). So, it’s now back to me concentrating on getting my old fitness levels topped up and munching anything that doesn’t resemble hospital food. I’m sure the fitness part will take a few more weeks as even a trip to the shops manages to knock me around a bit. And that’s one of the big factors that got me back to work so quick…I feel knackered just milling about at home and am desperate to get outside. Not sure if it was the side effects from hospital or just the dodgy day time telly and a rained out Wimbledon?

Kas is still doing really well…she’s just moved into her third trimester (I’m going to have loads of boring parent chat soon) and the bump seems to get bigger by the day. We’re still trying desperately to maintain a half decent social life when the baby arrives – we have the annual Anthony Nolan Ball coming up in November that we feel we must attend and then I’ve also been asked to be a speaker at this year’s CML Conference that is being held in Edinburgh. I may even be able to incorporate our new arrival into my time slot. We’ve also got my mate Jason and Jen’s wedding to attend (even though it’s on the same day that Kas is due) and I can’t forget to add in his Stag Do or “Festival” as it’s been tagged, that month as well. I may even fit in the Leukaemia Research Cycle from Glasgow to Edinburgh as well...

And it’s also time to farewell our friends Ish and Amy from the sunny shores of the UK. It’s so good having Aussie mates living in Britain…it makes you feel more at home and it also gives to someone to talk to when it doesn’t stop raining for 400 days straight. They’ll be missed but I’m sure they’ll make a good life in Kuwait where Amy has secured a very good teaching position. They were up in Glasgow on the weekend for their farewell and it was fun getting out and about in the city centre and attending a very Aussie BBQ from some Scottish mates Colin & Lorna. The BBQ was also a chance for them to give us all the news that Karen’s good friend Lorna is pregnant – we’re both very happy for them…she’s due only three months after us which will be brilliant!

It was also very funny to run into an old Aussie mate that has just moved here. It’s a very small world we live in!

My doc has just emailed to say that I’m not required to see them this week and that I can come back next week – it’s already looking good…back to fortnightly visits already! My blood tests, including Liver and Kidney function tests were all “A-OK”. In the words of Borat…very niiiice!

So then, it’s now a visit next week to the docs…I’ve also been asked to sign a form where the Transplant team are hoping to conduct another world wide donor search for me. This will be happening in a few weeks time – I’ve already been found a 10/10 donor match a year ago, but in case they are no longer listed or they can find a “better and younger” match, they are hoping to do another search. If anyone hasn’t yet joined up the Bone Marrow donor list yet, to me, this seems like a pretty good time. Remember, all that is required is a simple blood test…from the vein and not your bone. Check out the Bone Marrow Registry links on the right of the screen if you’re keen to help me out (and thousands of others!)…

http://www.anthonynolan.org.uk/

Thanks for the messages and emails…wish me luck for my annual work review meeting on Wednesday.

HAPPY 1ST BIRTHDAY TO MY WEE NEPHEW HAYDEN – LOVE YA MATE!

36. Time to Rest

Photos: Kas + bump, Nina & Ant, Jen & Jas; Me at home resting; Mum & Dad at Eiffel Tower...

It's good to be home. I had so many plans for the past few weeks...Glasgow to Loch Lomond bike ride, a few trips around Scotland with my folks and even popping open a nice bottle of red that's been lying down for the past few years to celebrate with everyone. Not sure what we'd be celebrating but any excuse would have been fine. I actually only feel fit enough now to release myself from the Play Station and head upstairs to start up my dormant laptop. The past few weeks haven't been fun...

It started with me posting a message on the CML support website about a swollen lymph node under my arm...I wasn't too sure of my next step, so without freaking Kas out too much I logged onto the trusty site. Without even having enough time to await any response, that's when the fever kicked in and I was summoned to my bed for some rest. It'd been a busy week with work and I thought a relaxing game of tennis could sort me out...not the best choice when you've got swollen lymph nodes. Anyway, 24 hours went by without knocking my temp under 38 degrees and that's when we decided it maybe best to seek some friendly doctor advice - they weren't as casual as me and before we knew it, I was rushed from one hospital to the next, X-rays of my chest and an IV drip stuck in my hand to receive urgent treatment. I had no idea what was going on! Then it was up to Gartnavel Hospital at 10pm where a nice bed had been set up for me and the haematologist registrar was awaiting my arrival...thankfully I got there with a lift from Kas and not the blue light ambulance they had waiting for me. I was keen to receive my prescription of antibiotics and head back up the road to my comfy bed...again, the docs weren't as casual as me.

One night quickly turned into two nights and it wasn't until last Monday morning someone seriously took a look at my X ray just to be sure. All the Consultants were suspecting Febrile Neutropenia (white blood cell crash) or maybe even Pleural Effusion (fluid on the lungs) - these are both potential rare side effects from my new meds Desatinib. I was just hoping for an easy viral infection and a kick up the arse to go home - I was actually too tired to drag my arse home anyway. Then in came in my great consultant, Dr Drummond...the X Ray had shown I was suffering from Pneumonia and that I'd better get comfy, cause I wasn't going anywhere in a hurry...excellent, two life threatening diseases to sort out now! Obviously I'm going to try harder than ever to get better as the last thing I need to do is put any more stress on Kas when she's nearly 6 months pregnant. It also wasn't what I had in mind for my folks to see while they were over visiting.

Eventually I started gaining some colour in my face as the week went on and stopped looking like a Scotsman in the middle of winter. The meds they gave me to treat Pneumonia has thankfully shown signs that it was clearing up but in doing so, I had to cease my CML meds until I finished my course of treatment. Hard to break the habit! The day after where my white blood cells actually did crash (3 down to 0.7 neutrophil count), the blood counts started to look better and Dr Drummond said I can go home now if I promise to do nothing but rest and perfect my Tiger Woods skills on the Play Station...

It's been a week now since I've been back home and creating a human imprint onto my new couch. My chest X ray on Wednesday showed great signs of improvement and my blood counts were the best I've ever seen... As you can imagine, I've been getting lectured daily by everyone - even the mailman popped his head in my door to tell me to slow down.

The docs aren't 100% sure if this was just a coincidence or if it was caused by my new CML medication (problems occur generally between 10-14 days after starting chemo meds), so it's a tough call what to do next. On one hand, maybe I should slow down a bit but the other hand seems more tempting...keep doing everything I did before to keep fit. The docs say I only got through this so quickly because I was fit. I think the key is just to have a break from tennis if I have swollen lymph nodes...

The only funny thing I see to come out of this, was the old ladies in the hospital ward chatting about the ghost of Gartnavel. I was intrigued to hear more - they say a few people had seen it last night and they heard about it from friends of there's who had been in overnight in the past. It wasn't until I strolled back to my hospital bed that I started to chuckle out loud...the night before I had woken with terrible stomach aches that made me burp for Australia and I was also shivering all through my body. The nurse had come to my aid at 2am to offer some support where she offered me some gaviscon for the belly and a white sheet to wrap over myself to heat me up a bit. Maybe that's what the old ladies saw last night - me walking up and down the corridors at 2 in the morning with a white sheet wrapped over my head. Gold!

So now it's back to relaxing and ensuring Kas is in the best possible shape with her pregnancy - the bump is growing so fast and I'm so eager to meet the wee baby! The house is much quieter now as my folks left the bonny shores and headed back for Australia - they'd be somewhere near Thailand as I type this. It's been great seeing them here but I do feel bad about them going through this hospital experience with us...not the relaxing holiday they imagined.

So until next week where I see my Consultant about the chest check up and the Desatinib pills I've restarted this morning, keep the emails and messages coming in...

35. Corbett Challenge

Photos - The Corbett has been Conquered; The View; Boys at the Start; The Steep Walk Up; Dawsie hanging on; Me Walking Down; Snow still on the Peak; The View out West; Mum & Dad in Edinburgh...

I feel I’ve only just recovered enough now to recount the adventure in the Scottish west highlands. A few of the boys and I had signed ourselves up for the ‘Conquer a Corbett’ Challenge to be held in May, a challenge placed by MacMillan Cancer Research to climb all 219 Corbett’s (2,500 – 3,000 foot high mountain) in Scotland and raise some much needed cash in the process. The destination we had chosen was Beiin Luibhean, about 2,800 feet high, that was nestled tightly amongst some other giants on the west coast of Scotland. Just to the west of Loch Lomond it began…

The boys arrived early on the Saturday morning and before long, we were packed and on the road. Unfortunately my old man couldn’t make it with us as he’d badly rolled his ankle half way up Queens View (beautiful hill just north of Glasgow) – we’d been talking about it for ages so it’s tough to see him wave us off and not participate. It wasn’t until we actually drove past some spectacularly high mountains near Loch Lomond that we had any idea of what we were getting ourselves in to – the debate started as to guess the height of the surrounding hills, most I’d imagine were exceeding any of our poor estimates. Once we arrived to the location we thought was the correct hill, we were informed that this one didn’t actually have any paths and we were to roam freestyle up the very steep edges.

We gained some height pretty quickly and it was only after 15 minutes that we almost had a few casualties. This climb was seriously, seriously steep – so steep in fact we couldn’t just walk up the side, we all had to traverse up slowly, zigzagging our way up the hill. The ‘challenge’ seemed much harder than any of us had anticipated. We pushed on harder to the next ridge and only then did we realise the scale of the climb, we were only half way! Then finally after two long hours, two Cherry Ripes, 1.5 litres of water and an apple we walked (or stumbled) our way over the last rise and walked around to the very peak, a place marked by a collection of stones piled on top of each other. We didn’t hand around too long, just munched our lunch (Dawsie had munched his on the way up in the car), took a few photos and started the treacherous walk back down to the car…another hour down that transferred the deep burn from the calves to the knees, quads and ankles. At the bottom, we were all pretty knackered and we congratulated each other for a good effort – just under a £1,000 was raised for the charity, money that will now go to helping people with cancer. Not a bad cause…

I’d only started the climb a day after I had commenced the new drug, Sprycel (Desatinib). I was slightly apprehensive about any side-effects I may encounter as it was recommended that I cease to take Gleevec on the Tuesday night, and only start the Sprycel on Friday morning. It was extremely weird not having to take anything for those couple days – trying to break an 18 month habit of a life saving pill wasn’t the easiest on my mind. Seeing I’ve now been taking my new meds for just over a week now, I can say that most of the side-effects have subsided and I’m once again left with a little more energy and a release from the stomach cramps I’ve endured for so long. Chemo tablets aren’t the nicest thing to take but I’d much prefer them in pill form rather than the ‘normal’ intravenous version. I guess the only issue I have left about Sprycel is that even though it has proven in many strict drug trials about it’s amazing effectiveness for people with CML, the NHS has only approved this in Scotland and not England. Its great news for me about the approval but you can’t help but think about the people in England and Wales who are in desperate need of this drug and can’t gain access to it. I know the European CML Support Group have kicked off a campaign to get its use approved in all of UK – I guess it raises more concern over all these new drugs that are currently in Phase 1 and 2 trials for CML. It means that it’s very, very good that these new meds are getting developed but they may not get approved by the NHS due to cost restrictions in the future. Its tough call and an argument I don’t really want to get too involved in but I’d label this as more of an outsider’s perspective…

My folks have now left the bonny shores for a week and are across visiting Paris. I’m so excited for them – to know my mum and dad came over here from country NSW, Australia and are now currently climbing the Eiffel Tower is a great feeling. It’s been great having them here to share our lives, watch the progress of Karen’s growing pregnant belly and cook some comfy meals only your mum can dish up. They’ve given us plenty of stories from back home – my nephew Hayden is growing so fast and lately has been attempting to walk! They’ve also come to a few hospital visits while they’re here and given me some support as the visits increase dramatically.
As I’ve now changed over from Gleevec to Sprycel, the docs want to now see me weekly instead of monthly to keep tabs on my blood count (the same as they did when I started Gleevec in Nov 2005) – they also need to monitor my chest. A few cases in the clinical trials shown signs of Pleural Effusions or fluid on the lungs…not sure why this happens but as they’ve seen it a few times, it’s great to know they’ll keep monitoring me so closely.

And then it’s back to the Glasgow to Loch Lomond Bike Ride next weekend – Mhairi and I took up the 22 mile challenge last year for the Anthony Nolan Trust. We’ll head up from Glasgow city centre next Sunday morning and hopefully an hour or two later, we’ll be meeting up with Kas and my folks in sunny Loch Lomond. Last year I did an interview with BBC Radio Scotland on the way up and I’ll probably be doing the same this weekend. Listen out for the dodgy Aussie on the radio this Sunday morning – what a voice to wake up to! The ride will be good training for the 50 mile Glasgow to Edinburgh, ‘Pedal for Scotland’ in September…

Thanks for all the emails and comments, keep them coming in! It’s great to see the visitor count come from all around the world – England, Scotland, Northern Ireland, Wales, Ireland, Australia, USA, Canada, Taiwan, France, Spain, Saudi Arabia, Greece, Czech Republic, Bosnia, Chile, New Zealand, Malaysia, Holland, Indonesia, Italy, Switzerland, Portugal, China, Brazil, Turkey, Germany, Israel, Egypt, Austria, Singapore, Tunisia, Hungary, Belgium, Korea, Finland, South Africa, Japan, Kuwait and India…

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 - http://www.justgiving.com/conqueracorbett

My old man will also continue his photo blog as he did last year - for very good Scottish highland photos, check out - www.craigsinclair.blogspot.com

Until then, keep the messages and emails coming in...