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…