59. Majella

PHOTOS - Julie & John's Wedding Day; Julie and the Girls; Kas and I at Church; The First Dance; Cycling through the French Vineyards; Cheesy Colin & Lorna; Me at the Harbour; Lorna, Eva, Chloe and Kas out for a Walk; Dinner in the Villa; The Edington's by the Water; Eva & Chloe; At the Villa by the Pool; Paul's Deep-Sea Fishing Adventure; Sea-sick and having a Beer; Stag Do Dress-up Day that looked far too real; Paul meeting Benfica mascot; Happy Chloe...

It’s only just hit me after reading through my latest post, how much has occurred since April. It was never my intention to let my blog updates slip; it’s really just a matter of circumstance than laziness. After I finally got used to penning my thoughts on a regular basis, I actually found it therapeutic as more often than not, it took me to actually write it down first before I could understand it. But now, thankfully, I find myself in a pretty good position on a personal level with regards to CML and most other things in my life manage to dictate rather than the opposite. However, it’s only when I get the best news I’ve had in terms of prognosis, that the trend continues. The good with the bad…

The customary email from my doctor arrived, 2 weeks and 2 days after my PCR test, and with usual trepidation, I opened it to reveal my latest result. This one however, read that unfortunately my test had become “lost” in the system and for me to book in another appointment and re-start the process. So, again, after 2 weeks and 2 days from this second test, the email again popped into my inbox…this time there was a result and along with the words “getting there!”. This new result showed a PCR of 0.125% - slightly down from the last one of 0.149% but nevertheless, it was the best result I’ve had to date and now achingly close to the “safe haven” of 0.1%. 

The same day however, whilst celebrating with a glass of Majella Cabenet Sauvignon from Coonawarra in South Australia (unreal stuff!!!), we were informed of some awful news about Karen’s brother Gav. My mate and brother-in-law.

He had just been diagnosed with testicular cancer. At 29. Shit.

Gav’s now undergone a major operation to remove the tumour and now undergoing chemo, in the same cancer hospital as I go to, and is mid-way through the first round of two. That shouldn’t even be in the same sentence – “same cancer hospital as I go to”! He’s a tough bloke and although he’s going through hell right now, I’m sure he’ll battle on through and come out the other side a stronger person. It just doesn’t seem right for Kas to have a husband and brother attending an oncology ward.

Kas, Chloe and I managed to get away with our mates to France in June, 3 couples and each of us with a child under 2. It was an unreal place – we were in an amazing island called Il De Re on France’s west coast. The weather was perfect, as was the wine and food. Within the French village, we were spoilt with a daily marketplace bursting with seafood, cheese and all things French. I managed to stack on a few kilos that week, but it was well worth it.

Then to follow, it was off to Lisbon in Portugal for my mate Paul’s stag weekend…organised by my mad mate Ish. It was an unreal and surreal weekend – it was great to catch up with the boys and carry on like old times. The deep-sea fishing wasn’t well received by a few, as sea-sickness got the better of them. The next day, it was time to dress up and don the gear that was requested of us…Reservoir Dogs outfit (black suit, white shirt, black tie, black glasses). Then Paul was dressed up in an authentic Arabian sheik outfit, where we were then transported to Benfica Football Club for a stadium tour. It was only when we arrived, did the reception we receive make us aware how truly realistic it looked. A sheik (dubbed Sheik Ali Bin Drinking) surrounded by 5 guys dressed up as security. Within 5 minutes we were ushered into the secret tunnel to get a private tour by a Benfica official, photographers, groundstaff and even the football club mascot, a massive bald eagle. I think this was sparked by Ish when he said “the Sheik wants to buy this club”. Overall it was a great weekend, plenty of banter and plenty of tourists caught up in the royal tour from the “aussie” boys from Saudi Arabia…

We've also been to two unreal weddings - John and Julie & Chris and Ros. Both absolutely brilliant days!

My work is still very busy, although we are currently undertaking a restructuring process – I don’t think there are many industries that aren’t affected by the economic slowdown. I still absolutely love my new job but there’s quite a lot of travel involved, London every two weeks, and the toughest thing is not seeing Kas and Chloe, especially seeing Chloe is changing almost daily - her new words are "toast", "daddy took it" and my favourite, "magpie". In between all these trips to London, Kas has also spent a week in Australia on a busy work visit setting up some medical drug trials (Chloe and I may even tag on her next one if she goes back in January). But it feels great to push CML aside and put my head down and get on with building my career and getting on with life. Because CML medication is now so advanced and it offers such a great quality of life, a big issue with this disease is the mind-set and mentality (is that the same thing?) of the individual. If you want to lead a “normal” life, then you can certainly give it a try. In the majority of cases, the only thing stopping you is you.

I’m back at the docs in a fortnight, where I’ll have my three monthly catch-up and PCR test taken. My folks will be visiting in 5 weeks time, so they'll probably be here when the result comes in. Please keep the emails and messages coming…even though I’m rubbish at updating. Best wishes also to Gav, who I’m sure will kick some cancer arse!

58. Viva La Cigar

PHOTOS: Kas and Chloe in the Park; Playing on the Slide; Me and Chloe hanging out; Dawsie and new arrival Freddy; Chloe in the house; Winter's final snowfall; Me in Havana; At the Havana Club Tour; Chevy's at Revolution Square; Cuba!; Me and Jon with the Havana Club Maestro, Don Jose Navarro...

A recent comment that was left by a visitor on this web page asked ‘why haven’t I updated my blog yet, or have I now passed?’ 

Seeing my last update was back in January, I thought now was the time to switch the laptop back on and start typing once more…even if it’s just to let you know I’m still here…

Since travelling back to Australia with Kas and Chloe in January, there have been plenty of changes in our lives, and whilst touching wood, things are the best they’ve been in a long time. My last PCR in December 08 was 0.29%, a nice drop from the previous 0.6% - well only two weeks ago I got my three monthly email from the Doctor’s secretary to say that it had changed again and it was my lowest to date. 0.14% - gold! It’s now so close to the ‘safe haven’ of 0.1%, tantalisingly close. My appointments have now been moved to three monthly also, which leaves me in an interesting position – I now have much longer between visits that I almost forgot about CML and then there’s the downfall when I do attend the Oncology Clinic, it’s a hell of a reminder.

Since completing the 3 Peaks Challenge in June last year, I’ve been considering plenty of options suggested by friends on how we can top our last fundraiser. I’ve been asked to join the Leukaemia Research Paul O’Gorman Centre committee and help with ideas and suggestions on how to keep the money coming in during this tough economic period. Funding, donors and research grants have almost halved in the past year, so the charity industry certainly is competing with each other for much needed cash. Hopefully we will have a plan on what we will do next – Kilimanjaro, Everest, a stair case?

Not long after arriving back on the frosty shores of Scotland in mid-January, I was then off on a work trip to Havana, Cuba – we had achieved a company incentive to hit our targets. What a holiday, I mean, work trip! For anyone who has travelled to Cuba, I’m sure agree it lies somewhere in the middle of beautiful and crumbling chaos. One street will be falling apart, lined on either side with a mixture of 1950’s Chevy's and Russian ladas, and the next road along will be an impressive building, completely covered in Revolution or Fidel transcript. In 1962, the US imposed an embargo on Cuba and not much has changed since then, however it was great to see that some of the UN’s cash was being spent to restore these deteriorating buildings. The trip to the Havana Club factory, cigar factory and the copious amounts of 7 year old rum consumed was a definite highlight. Although Kas wasn’t best pleased that I came home with a box of Monte Cristo fat cigars in my hand luggage…

Soon after our work trip, I was interviewed and subsequently offered a promotion to Field Sales Manager. It was mark of achievement for myself as I had not too long ago deliberated what Leukaemia diagnosis would mean in terms of a career. I snipped the end of one of my Monte Cristo’s, lit it up and celebrated that no matter the hurdle, you can still find ways to overcome them.

I’ve just got a call from my mate Dawsie – his wife Jen has delivered a little baby boy! Freddy Charles Dawes at 6 pounds 14 was born on April 7^th, only 10 hours after my birthday – great news. This box of cigars is starting to come in handy!

I’ve been in a few articles lately, mostly publicising fundraisers or leukaemia research and I’ve noticed twice I’ve been referred to as an ex-patient. Not exactly accurate journalism. In some ways I feel like I’m in the middle of a fight with Leukaemia and I’m doing everything I can to get in front and there are other times that I feel completely normal, that I have a normal life and that I seem a normal, healthy person. But I’ve never thought of myself as being cured or an ex-patient, actually I’m very far from feeling that way. The insurance companies look at anyone with CML as an extreme risk (questions like ‘how long do you have left to live?’, aren’t uncommon), they see me as a patient and nothing else. I guess what I’m trying to say is that for all the struggle and fight anyone does when they have a life-threatening disease, it’s hard to ever get on with life as it was or as you’d like it to be. It really is like having two personalities.

Enough contemplative chat, I’m off to visit little Freddy and get down to the level that I converse with so well. I’m not too sure when is the best time to sit him down and tell him to stay away from Chloe though.

Thanks again for the messages and emails (except the cheeky lady asking if I’ve passed). Kas and I are off to Mar Hall this weekend where we will celebrate our 3 year wedding anniversary in style. Bring it on!

57. Australia and Back

PHOTOS: Me, Kas and Chloe on the Taronga Zoo Ferry; Chloe on her beach towel; Mum and I walking the Pram; Family day out at the Zoo; Kas and Chloe on Stanwell Park Beach; Dad and I; Kas, Tash and Chloe at the Zoo; Paragliding at Stanwell Tops; Tash, Claire and Nick going out to dinner; Giraffe in front of Sydney Harbour; Drew and Chloe in Cowra; Chloe leading Dad; Hayden sharing the love; Chloe touching an Australia python; Spider caught in the flash...

Once again, it’s been a while since my last update. No news is good news in that sense I guess. Eight weeks ago I was enduring the busiest period at work, counting the days down until Kas, Chloe and I boarded a plane to an Australian summer and also a PCR that was to determine so many things in my prognosis and treatment. Where to start!

Only three days before we backed the boardies, zipped up the cases and headed for Glasgow Airport en route to Sydney, an email appeared in my inbox entitled ‘Matt’s PCR’. I’ve never been one to sit back and contemplate what something of significance will mean to me – instead, I opened it up and read it before I even got my email alert. To me, it was a great result of 0.29%. The lowest result I have ever got and more convincing that the previous one of 0.67%. A nice present before we head on holidays. And that’s how I left it, a nice result even though it wasn’t at the gold standard 0.1% that the consultants were hoping for but a good result none the less. I had my consultation booked in the diary for the day after I arrived back from holidays, so at least there was one thing less to worry about.

Anyone who has ever travelled longhaul with a one year old will know pretty much how our trip went. I’m not going to moan about the plane journey because in truth, there were some times that I thoroughly enjoyed myself (the free business class champagne from a air hostess that loved Chloe wasn’t bad – even though she never witnessed Chloe running into business class and pouring water on a man fast asleep on his flatbed…) The stopover on the way there was good and bad depending on how I looked at it. Dubai gave us a chance to charge our batteries and breakup the trip but it also meant a whole day longer until we were back on Aussie soil. Finally we arrived after the 15 hour second leg and it was back to Cowra for two weeks to soak up the rays with my family – gold!

Seeing the kids all play together was priceless and it was great how much they all got on. It was the first time since I’d seen my mum since she had a tumour removed from the thyroid last year and I was very pleased to see how well she was looking. I think there was a smile on my face the entire trip. Then we all piled into the cars and headed down to Stanwell Park, an hour south of Sydney on the coast, where my folks had organised a beautiful beach house for us all. With the fish markets nearby, we were rarely short of fresh seafood and with the beach so close, we were rarely dry. With the temperature hovering anywhere from 26 to 41 degrees and not one drop of rain the entire holiday, the water was the only place to seek refuge – a lot different to the winter temps back in Scotland. All in all, it was an amazing trip back home to see my family (seeing Chloe’s cousin’s Hayden and Eliza growing up was unreal) and my mates and a trip I’d like to make far more often. The only downer was seeing the Aussies lose to South Africa in the cricket on home soil, a first for 16 years! I’m ready for that call up to the national team…

…25 hours on a plane later, we were back in Scotland where it was time to head back to the real world and back to the Gartnavel Hospital in Glasgow. I saw my Consultant pretty swiftly and we must have chatted for over an hour. She is still desperate to get my PCR below 0.1% because they are now referring to this level of residual leukaemia as a ‘safe haven’. Although 0.29% isn’t very far away and in actual fact, I’m doing very well on the meds, she’s still desperate to try different things rather than sit back, waiting to see what happens. She’s happy to observe for another 6 months but if there’s sign of budging, there’s a good chance I’ll move onto the new Novartis drug ‘nilotinib’, the sister drug to Gleevec. It can only be a good thing to have one of the most respected CML specialists in the world with my health at the top of her mind. We were also discussing what our next adventure to raise money for the Leukaemia Centre may be? My next PCR is scheduled for 4 weeks time, so this will be the first of three to determine what the next steps are.

Thanks again for the emails, please keep them coming in. Fingers crossed for my next PCR in one month…