Thursday, June 21, 2007

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...

Sunday, June 03, 2007

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…

Friday, May 18, 2007

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...

Saturday, April 28, 2007

33. Queens View








Photos: Matt & Dawsie on TheHerald Magazine; Scotland Newsagent Billboards; Nina & Anthony Wedding Party; Dawsie, Jen & Beautiful Bride Nina; Bridesmaid Kas and friends; Matt & Anthony the Groom; Skipping stones under the Forth Road Bridge...
What a fortnight! As you may already know, I signed up for the next month's Conquer a Corbett challenge in the bonny Scottish highlands...a Corbett is a mountain between 2,500 & 3,000 feet for the non-walkers and non-scots among us. It's planned to be a good day out on May 26th, we can raise a few quid for MacMillan Cancer Research and get fit in the process - it was funny to hear that the papers wanted me and my mate Dawsie to represent the cause and pose for a few snaps. The location was chosen to be up at "Queens View" with a great view looking over Loch Lomond with the sun setting over our shoulders. Our ignorance really shone through when we had to ask the photographer questions about what and when these pics will be used. So you can imagine the laughs we caused when we woke up last weekend to every Scottish newsagent advertising The Herald with a photo of us boys posing on the front. Gold!
It was the same day we woke to the newspapers, that we had woken after a great day and night out. Kas' best friend since 4 years old, Nina, got married to another Aussie bloke (and younger too...) Anthony on the Friday. We spent the previous night at Prestonfield House in Edinburgh before heading off to the stunning venue in South Queensferry. This place seemed to have a real Aussie feel to it and it certainly welcomed all of the guests for the day perfectly. Nina looked gorgeous, just like a porcelain doll and big Ant looked pretty good too in his Scottish skirt, the bonny kilt. Such a good day to leave all my CML issues back at home and a chance to burn the dance floor up without too many worries...
So then in the midst of the hype and gearing up for Kas's brother Gav and Nat's wedding next weekend, the Aussies playing well in the Cricket World Cup, mum and dad arriving in a few days time...I was pulled way back to earth yesterday with an email from my consultant. It seemed that when I didn't see him personally last visit, the registrar who I saw took a PCR test and I was just given the details yesterday. Not too good, but not too bad either...it's another result exactly the same as the previous three - 2.7%. I'll be seeing my doc this Wednesday, so from there I think we now have enough ammunition to present a pretty good cause for me getting off these meds and onto one of the new drugs - preferably Nilotinib or "son of Gleevec". It'll be a very important catch up as far as I'm concerned...I know by now my CML counts should have come down way below the mark it's currently at. I'm also a tad worried that they recommend the Bone Marrow Transplant route now as we have a little one due in September...not very good timing as you can imagine. It'll be a tough call as I am feeling so good right now, fitter than I've ever been and looking extremely, extremely handsome ;) Fingers crossed for the new meds...
So now it's onto the next countdown and something I've really been looking forward to over the past few months...my folks arrive back in Scotland for a holiday on Wednesday. I can't wait to see them - let's just hope the good run of sunny weather continues while they are here.
Well done to Ali who completed the London Marathon last weekend for me and The Anthony Nolan Trust. Such a gutsy effort in pretty hot conditions!! He's raised almost two grand and still has a small way to go to reach his target of £2,500 - check out his site at http://www.justgiving.com/ajtb
For more info on our Conquer a Corbett Challenge in May, check out our site at : http://www.justgiving.com/conqueracorbett
So until my appointment this Wednesday... thanks for the messages and emails! Keep them coming in...

Monday, April 16, 2007

32. Spring has Sprung




Photos: 2 x My 29th Birthday last week; Spring has arrived in Scotland; The boys to climb the Corbett (bottom of page)...

Finally things seem to be slowing down a little and giving us time to catch our breath, see each other for more than one day and start to think about the year ahead. Just trying to get our head around everything that’s going on right now is a slight struggle. Then there’s the news of Karen’s pregnancy…this will inevitably curb our somewhat selfish lifestyle. No more trips for two to Europe anymore, there’ll be three soon… And I can’t say I’m at all disappointed about the addition to the Sinclair Clan later this year. I’m still over the moon and looking forward to September more and more…

Then there’s the CML. It’s been great that it has been forced to take a back seat lately. I doubt there will ever be a day I don’t think about it…I always seem to be summing up options, checking new therapies and keeping involved with the Leukaemia charity work. Although I’ve never let it get the better of me and consume me, I can say that I do think about it less each day. And it’s great to witness others who are close to me do the same.
As for my doctor appointment two weeks ago; I’d got myself very ready and prepared to talk to my Consultant about the not-so-good PCR results. I felt I needed to talk about other options and determine what the next route I will take. However, I was met by another registrar who told me my ‘usual’ doc was on hols and if it was ok to see her instead. I wasn’t too concerned as she looked like a supermodel but I was felt slightly let down as I had so many questions still hanging over me…and a few Karen made me ask too. So the diagnosis was anti-climax and the remedy was to see my ‘usual’ doc in a 4 weeks time (cheesy I know…)

So that was that…the quiet time has come and it has now gone. I celebrated my 29th birthday last Friday in Glasgow’s West End with a bunch of mates. We kicked off proceedings with a few beers and then later that night we headed out for an Indian curry. Love it! This weekend is Karen’s friend’s Nina and Anthony’s wedding (best friends since age 4), so it’ll be time to don the Sinclair Tartan kilt once again and burn up the dance floor with my highland free-flowing dance skills. I really am terrible with the bagpipe tunes but I’ll do my best to represent the Aussie’s and make them proud.
Then not long after, my folks will arrive back on the bonny shores for their holiday; I can’t wait for the catch up and show them around the ever greener country-side. I love seeing Spring liven up everything and breathe life back into the world after a long north hemisphere winter… They’ll also be here for Karen’s brother Gav and Natalie’s wedding in early May.

So there’s plenty to keep me busy, entertained and my mind off the up coming doctor’s appointment in two weeks time. I’ll admit that I’m slightly apprehensive and a tad nervous about seeing him – not too keen on any bursting my bubble just yet. But life must go on…unfortunately that includes a few trips to the oncology ward to sort out these dodgy Leukaemia cells. I’m just so pumped and positive to knock these cells down to a manageable level, gain a good PCR result and to keep all my energy for Karen and ensure she’s doing well with her pregnancy. I do hate giving her any added stress and worries; and that’s why the docs have agreed to give Kas a 20 week scan to make sure everything is going well.

So until my next appointment in a fortnight…check out our ‘Conquer a Corbett’ site. My mates Darren, Dawsie, Nic and I will be climbing Beinn Luibhean for MacMillan cancer research. They’re hoping to conquer all the Scottish Corbetts (mountains between 2,500 and 3,000 feet) in the month of May. If you’re in Scotland, pick up a copy of The Herald this Saturday to see myself and Dawsie posing like a couple of amateur climbers… http://www.justgiving.com/conqueracorbett

Also, Gav’s best mate Ali is running the London Marathon on 22nd April for me and the Anthony Nolan Trust. If you’ve got 5 minutes, support him by checking out his site at… http://www.justgiving.com/ajtb

Keep the emails and messages coming in…

Thursday, March 29, 2007

31. Good With The Bad






Photos: Me and Kas at Mar Hall (1 Year Wedding Anniversary); My bro Nick after shaving his hair for the Leukaemia Foundation...

Finally I have some news to write about. There are actually two bits I need to get through…one that I’m absolutely stoked about, and the other I wish I had something better to report. What’s that saying again...you’ve got to take the good with the bad? The past month has just been so hectic with our lives in Scotland that I’ve hardly had a chance to sit down and reflect on anything. It’s just full steam ahead as usual…

I guess I’ll start with the not so good news…well, not as good as either myself, Kas or the doctor expected anyway. My PCR has now officially been “stuck” at around 2.5% since last September after hearing I’d finally achieved a great result of 1.5% and a 0% reading in my bone marrow last August. My Gleevec dosage had been increased at the start of this year (from 600mg to 800mg) in an attempt by the docs to combat this and have a go at reducing my PCR levels to a reasonable level. The news is that it is still stuck and the result today was 2.9%. It may look that it’s going up slightly but chances are, it is just remaining the same level. To be honest, we were expecting a much lower result…I’m feel the fittest I’ve ever been, most of my burger belly has diminished and I’m munching a pretty good diet. In my head I thought this would help.
So I will go back to my Consultant next Wednesday and have a chat about our options. What’s the next step? As the drug company seems to think I’ve achieved a decent enough result to not warrant a change of medication, this may inspire them to look at this case a bit more generously. Not that I can complain with my current treatment anyway from the hospital, I’m getting very good attention here in the bonny lands and my doc is a great guy. So hopefully either the next PCR test will show some positive signs, the drug company allow me to move onto the new meds “son of Gleevec” or we move down the bone marrow transplant route. Still an option we are weary of…on the other hand, if it all works well with the BMT then there’s a great chance of a full cure. Back to the drawing board then I guess…

Now the news I’ve been holding in most of this year…my wife Karen is pregnant. She had her first scan last week and it appears we have a wee hyperactive baby growing well – hands waving, legs kicking and tossing and turning. Maybe just as irritable as us and that same urge to keep moving about and not stay still. I’m so happy as Kas never had to go down the IVF route (touch wood) – it just so happened that I found this out on the day I’d booked us in for IVF and then I saw an article about men on Gleevec being able to conceive normally. Very nice! So now we have a third Sinclair joining the ranks in September…
This is obviously something I will be fighting harder than ever to remain well for. To know I have a child due this year (expected 5 years exactly after Kas and I got together), it makes me even more focused and determined to get some better results.

Talking of Kas and my time together; we just celebrated our 1 year wedding anniversary last weekend. We went back to the site where the best day ever took place, Mar Hall just outside of Glasgow. The sun made a special appearance for us, the place looked stunning and the upgrade we received went down very well. To know what’s happened over the past 12 months is enough to give me a headache…so many events, ups and downs, fun times and sad ones too, plenty of trips away and the chance to have my family all the way over from Australia to visit me. I can’t say it’s all been bad as we’ve learnt so much in that time. Theoretically I know how these Leukaemia meds should work and how they should work in my body – let’s just hope they start doing what they’re designed for...
So now it’s only 5 weeks away until my parents board their flight and endure the long trip back up the Northern Hemisphere and visit us in our new pad in Scotland. They’ll just make it in time to come to Kas’s wee bro, Gav’s wedding in May…I can’t wait to have them back over – it’ll fun too for them to see Karen’s bump already taking form.

So until my next appointment with my Consultant in a week’s time, keep the messages coming in and if you have time (of course you do), check out a few of these sites…

This is for my big bro Nick (photos at top of page), who just shaved his hair off for the Leukaemia Foundation in Australia. Such a great effort as Nick raised a hefty total for the charity. He’s gone the skin head look…as a policeman I’d imagine there aren’t too many criminals who’d be messing with him:
http://www.worldsgreatestshave.com/profile.php?id=336835

Also, because of our new arrival due in September, I’ve postponed my assault on Mount Kilimanjaro until August 2008 (doing it for the Anthony Nolan Trust). As I won’t be fundraising for this event until later this year, I’ve got to get some training in….there’s not too many better ways than to join a few mates and “Conquer a Corbett” for MacMillan Cancer Charity. If you have a spare quid, please sponsor us for our climb up Beinn Luibhean: but remember I’ll be asking again for support for my Kili trip :)
http://www.justgiving.com/conqueracorbett

Friday, March 16, 2007

30. World's Greatest Shave

Just a brief update...

My mate Drew has just shaved off his hair and beard for Leukaemia Research - "The World's Greatest Shave" is an annual event held in Australia for those wishing to raise cash for a good cause...and Drew managed to pull in over $1,000 for the Charity! Such an unreal effort...

In regards to Drew, this is a huge deal…I’ve only known him to shave once in the past few years (at our wedding – not even at his!) and avoids the barber like the plague. Check out the photos below:



Before


Getting Started


Biker Beard?


Getting Rid of it...


Done!


I'll update again hopefully next week after I get the news from my important PCR test - this is the one to tell me and the docs if the new increase dose of Gleevec (800mg) is helping to reduce the amount of Luekaemia cells still in my body. Keep your fingers crossed...

Monday, March 05, 2007

29. Barcelona






Photos: The boys at Ish's Surprise Birthday Party; Gav in his Buck's Weekend Attire and his gnome "Wee Gav"; Selling his "L" Plate to a 6 year old for 1 Euro; Barcelona Cathedral; Me in the Sun...

While I wait for the latest results, I’ve managed to keep myself pretty busy over the past few weeks. Although I’m obviously waiting and hoping the new increased Gleevec dose will do the trick, it can be quite a boring and tiresome process. I don’t particularly think it’s a good thing to wait impatiently and rush away the time up until such results are ready. I don’t see the point. Inevitably the blood samples will be tested, scrutinised and then fed back to you through the doctors…in the meantime, I’m totally up for enjoying each day as it comes. What the use of fighting Leukaemia and finding a cure, if you aren’t willing to enjoy the time that you do have? And I’m not saying all people don’t enjoy what they have, I just know that I’m making up for a few others who aren’t…

Both Dawsie and I boarded the Ryanair flight last Saturday morning; this trip was to London for my mate Ish’s birthday. A ‘surprise’ birthday. His girlfriend Amy had organised for us to come down, pretend that this was the surprise and help him consume a few beers whilst watching the 6 Nations Rugby. He didn’t expect to turn up to the club that night and be cheered by all his mates waiting patiently for the main man to arrive. Very good night to catch up with everyone!
Then after a few days back at work, I found myself boarding the next booked flight. This was for Karen’s brother Gav's’ Bucks Weekend away; 20 guys, a trip to Barcelona, beers flowing from 6:30am Thursday morning right through until Sunday – priceless! It was brilliant to leave the Scottish Baltic winter behind, fly only 2 ½ hours and be sunning yourself in 25 degree heat by the Mediterranean Sea. It’s such a fantastic city – although most of the 4 days were spent in a pub we did managed to venture out and see a few sites. We stayed in the Gothic/Latin region, right next to the Cathedral and there were tiny streets forking off in every direction. They were all lined with shops, buskers and tapas restaurants – I’ve stacked on at least a stone after munching my way through a tonne of Paella.

The run of Karen and I only managing to catch up occasionally is still the ‘norm’. We not had a weekend together for 4 weeks and the next two, Kas will be away enjoying a couple of Hen’s weekend’s away. Good time for me to get a few rounds of golf in…
Then before we knew it, we realised the 25th March is creeping up and that we had better sort out our 1 year Wedding Anniversary. Again, I’m not a fan of the phrases “I can’t believe how fast time’s flying” and “wow, this year has flown” (not sure who really says “wow”)…but, the past year has really ticked by at a rapid pace. So the next time we do catch up for a weekend, we will be back in Mar Hall where we were married one year ago and enjoying some quiet time…

So as I’m enjoying my ‘waiting’ time, my next appointment to see my consultant is for this Wednesday morning. I’ll be seeing my usual doctor, Dr Drummond – such a legend! We’ll go through the usual CML chat, talk about the options and then I’ll be rolling up my sleeve and getting the next PCR test taken. For those who know, this is a pretty important one. It’ll be the first since I had my Gleevec meds increased from 600mg to 800mg one month ago. I don’t think either of us will be expecting a huge drop but you can bet that we’ll be hoping to see an indication that it’s working – a drop from 2.8% to anything would be good. Just not up…

So in the meantime, please check out my good mate Drew’s Leukaemia Foundation’s “World’s Greatest Shave” website. Seriously, this is a huge deal…I’ve only known him to shave once in the past few years (at our wedding – not even at his!) and avoids the barber like the plague. Yes, he’ll be shaving his face and head for a very good cause – please check out the site at : http://www.worldsgreatestshave.com/profile.php?id=306630

Also, congrats to my cousin Dan and his wife Tizza – new baby boy called Sean was delivered last Friday…unreal!

(If you find it annoying to keep checking my Blog – sign up on the right with Feedblitz. You’ll be emailed every time I update it) Keep the messages and emails rolling in...

Thursday, February 15, 2007

28. No Show






Photos: Me and Kas; More Cold Scottish Weather; Johnny at Twickenham; My signed "Beefy" Botham Bat - for walking with him for Leukaemia Research...

Well my new buddy in conquering this Leukaemia is a no show.
In my last catch up with the doctors, they recommended I now should be looking at another form of medicine, as the Gleevec I’ve been munching for the past 16 months just hasn’t worked as well as they’d hoped. Or as well as I’d hoped for that matter.
The new drug to take over where the other left off was to be a relatively new drug by the same company called Nilotinib. The next phase in attacking the bad and ugly cells in CML patients sounded like it was to be brilliant – almost like a guarantee of bringing my PCR down to a nice manageable level. Unfortunately, the doc’s letters of request were knocked on the head. A definite no show…

It’s not all bad anyway. The drug company refused to let me use the new drug was because I’d had a “reasonable” response to Gleevec – funny how “reasonable” means different things to the doctors and the drug companies. As I said, it’s a relatively new drug and going through the final phase trials, where it will hopefully gain approval and be granted to be used by CML patients without the sometimes unattainable “optimal” Gleevec response. I’ve now been bumped up from 600mg (started at 400mg) to the max of 800mg. I thought I’d struggle with the side effects, but (touch wood – I am turning Scottish!) they all seem to be in check right now. In fact, my snoozing has been the best I’ve ever had.

So my next big PCR will be in 3 weeks time when I meet up with Mark, my Doctor, again. He’s pretty confident that it’s my size (too many BBQ Burgers) that has been the culprit in keeping me from getting a better PCR. I’m slightly larger than the average Scot…
They also received the “Mutations Test” back from the London Labs and it’s confirmed that there is NO mutation in the cells. So 800mg should hopefully do the trick. Fingers crossed once again!

As usual, everything has been happening at a hundred miles an hour. Kas and I hardly get to see each other lately as we’re both on work trips – a quick hello in the kitchen is about as much as we can fit in. Last weekend’s trip was the favourite for me though – down and back to London in a few hours to host our corporate box at Twickenham. It was unreal!
80,000 England rugby fans slowly and eerily singing ‘Sweet Chariot’ was enough to make the hairs on any person’s neck stand up. Pity about the rugby though, Johnny Wilkinson is back which is great for English Rugby but bad for the fans – far too much kicking for a southern hemisphere lad…

My Annual Charity Fundraiser has been having a few hiccups lately. Last year I raised a hefty £3,500 for Leukaemia Research and the search for this year’s event continues. I just booked for Augusts’ ‘London to Paris Bike Ride’ but was called yesterday to say it was cancelled. Funnily enough, there were not enough nutters willing to join me. If only we could another 20 people…
As climbing Mt Kilimanjaro is set for next year, I’m still looking at doing something a bit harder than most other events. There maybe an Event being organised for the Iceland Volcano Lava Trek in July. There’ll be more info to come – so get your wallets ready to sponsor me and Anthony Nolan Trust. Any other ideas are welcomed.

As usual, keep the messages and emails rolling in and if you’re young fit and male – check out the site as there are people desperate for you. No it’s not a porn site!
* Unreal to see where the Visitor's to this site since adding the Counter last week are from: Australia, USA, UK, Ireland, NZ, Spain, France, Chile, Greece, Bosnia, Czech Republic, Taiwan, Malaysia, Canada, Holland and Saudi Arabia...