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…

56. The Dance-Off

PHOTOS: The Girls at the Ball; Johnny the Prize Winner; Walking Chloe to Gran's in the Morning; Snow at Gran's House; Sunrise over Glasgow; The Snow is Falling in Milngavie; Taking Chloe and Kas to see Santa; Newborn Amelia, Vicky, Kas and Chloe; Proud Dad Graham; Chloe will the Pigs; BBQ in Winter; Matt with his Shotgun; Dawsie missing another Clay; Ice over our back Pond; the drunken BMW purchase...

I don’t know how long it’ll take to acclimatise but the cold crisp days in Scotland to the arid lands of Australia couldn’t be more of a contrast. The days are among the nicest I’ve seen them on this side of the globe, with plenty of blue skies, thick frosts and crunchy white snow. I reckon we might be cowering under the air conditioner for the first few days in Oz and only when I’m brave enough, I’ll test my white skin in the sunlight. With only four weeks left until we head back home to Oz, I’m starting to get very excited…

I should be getting my PCR result back pretty soon as I was with the Doctors last Tuesday – my bloods are still looking completely normal but this time around, I’m not expecting a great deal of change with my PCR. It’s been stuck the past four tests, so I’ll be perfectly happy to be emailed a similar number. I’ve been on my new meds Sprycel for 18 months now, so if there’s not been a significant change in that time, then anything from 0.3 – 0.8% will be good. Anything over 1% won’t be well received. We spent most of the consultation talking about ways we can raise cash in the future and what new meds are being tested and trialled – I’m assured it’s looking pretty good as far as CML is concerned. Kas, a few of the 3 Peaks gang and I were invited by the Lord Provest (who ever this bloke is?...) of Glasgow to the official opening of the new Leukaemia Centre we raised £16k for, at the City Chambers. It’s good to see that the 3 Peaks effort in June is still being recognised as a pretty decent fundraiser. We’ve even been dedicated the Gel-doc machine or the ‘work horse’ as the scientists call it, with a plaque sitting proudly on top. As good as the 3 Peaks Challenge was, I still haven’t been any where near a mountain since then. Maybe it’s time to dust down the boots as get back on hills.

My work is currently in the midst of the busiest time of year, so it’s been pretty tough to get too much else done. For some reason, the booze industry defies the predictions and continues to power on with no signs of decline – maybe everyone is drowning their sorrows in this economic doom and gloom? Anyway, it’s good for us and because of this, the whole company is off to Cuba in February, a few weeks after I get back from Oz. Bring on the mojitos - gold!!

My mate Dawsie celebrated his 30th the other week and we celebrated with in a nice rented chateau in the Scottish borders. Very nice and a highly recommended neck of the woods! Then the weekend following, it was time to head along to our annual shindig that is the Anthony Nolan Scottish Daisy Ball. It’s our third ball in a row and it keeps getting better and better – the fact that I sponsored a booze hamper prize which was then won by Johnny on our table, helped get us going after consuming a bottle of whisky in record time. The entertainment was unreal as usual and the venue was stunning…after many more drams of the good stuff, Dawsie got the party going by having a soccer competition with the ex-Dutch Football Captain, I tore the skin off my knees with a monster knee slide to win a dance-off and Colin having a monster dance-floor stack that made the whole crowd turn and look. After that got out of hand, we left the premises late into the night with snow falling around us. It wasn’t until the next morning that Kas reminded me of my purchase from the silent auction the night before and when I went downstairs, I was greeted by a children’s electric BMW car that I bought for Chloe. It wasn’t until later that we read she can’t even use it until she’s three. Very funny! Anyone keen to come along next year, just let me know and I’ll sort out the tickets…

The next day, our friend Mhairi left for Mumbai in India for a work trip until Christmas. She arrived in the morning to her hotel, the Oberoi, and thankfully she went out for dinner on her first night as her hotel was attacked by terrorists. As you can imagine, everyone's thoughts were with Mhairi and her colleagues and she spent the night on the restaurant floor praying the shooters didn't enter, as only two doors down, tens of people weren't so lucky. She is now back safely in Glasgow and it's very good to have our mate back!

The baby boom is continuing with Karen’s family friend Graham (or Alexei Sayle as my brother calls him) having a wee girl called Amelia. And shortly after, Karen’s cousin Emma also had a wee girl called Niamh (pronounced Neave). All babies and mum’s are doing very well. I can’t wait now until Jen and Dawsie have their baby in April next year!

I think this hill-walking thing is growing on me now, as every time I look outside to the snow and blue sky, I’m tempted to don the gore-tex and get outdoors again and again. Chloe’s commute to her Gran’s in the morning has been via the backpack on her dad’s back for the past few days. Wish me luck that the PCR sends me on a nice holiday and I hope everyone has a great Christmas and New Years!! Keep the messages and emails coming in…

55. Birthday Girl

PHOTOS: Chloe's 1st Birthday Cake; Opening her Presents; Girls enjoying the Party; Bobby and Ish; Fellas on the Beers; It's my Party and I'll cry if I want to; Feeding the little Lady; Kas Opening Presents...

I’ve been unsure of what to think of my PCR result I received a few weeks ago. This time last year, I was getting tested every few weeks – I was just moved onto the highest possible Sprycel dose, so the docs wanted to be assured that they were doing the right thing. One year on and I’m only heading back to see the consultants every six weeks and having PCR taken every three months. More emphasis on each one now as you can imagine! So with everyone so keen to finally see how well I’m coping with the high dose, it was with an email I found out that the rollercoaster was set to continue and it’s still not time to get off…

0.67%. Three months ago it was 0.45% and the previous was a record breaking (for me anyway) 0.3%. I was sure this was bad news and only desperate measures could be put in place to avoid any further damage. I felt I was getting more susceptible to viruses and that maybe my immune system was being jeopardised by something of my own wrongdoing. I felt totally fine, healthy and fit, so I certainly had no explanation on why there is an upward trend. Too many Christmas mince pies already?

After a few weeks of deliberating, mainly about hounding the docs for an explanation, I held my tongue and awaited my appointment last Tuesday. I usually get seen by either one of two main consultants, so I was slightly taken aback when another haematologist grabbed my notes and loudly called out my name in the waiting room. I wandered into her consulting room and as she flicked through my notes, I couldn’t help being nosey and sneak a peak at the notes. All I could make out was “reconsider bone marrow transplant if PCR was above 0.5%”. I could feel myself tighten up and when she said that maybe my other consultant should see me as she needed to “talk” to me about something. I already knew what about…

Talk about a case of over-imagination. Professor Holyoake apologised that I never received the email from her to explain that she is quite happy with the results and not to worry. She looked at my previous 12 PCR results and grouped them into 3’s – the first batch had an average of 2.6%, the next batch was 1.6%, then 1.2% and then finally 0.45%. It’s all about perspective! She would only ever worry is there was a definite 10-fold increase ie; 0.3% to 3% and slightly concerned for a 3-fold increase. As long as my next PCR is under 1%, everything should continue as normal as it has been.

19th October will be three years since diagnosis – I definitely fought hard during the initial few months and year, and since then I’ve pushed on to make life as normal as possible for my family and myself. But even three years on, I still can’t help getting dragged into worrying about my future from time to time. Most of my time is spent living as though I don’t have Leukaemia and it’s not even a conscious decision. Of course there are side-effects from my meds but if I treat them as normal, then everything else in my life will follow suit. I’m aware that I don’t update my blog as often as I used to but revisiting this, forced me to deal with issues that I’ve put to the back of my mind. I live as though everything is fine but I’ve got to realise that I’m treading pretty close to the edge and that my PCR’s are far from optimal. A risky transplant will continue to be the next option, so let’s hope I can keep on this same road for a lot longer.

One of the main things that will keep me going strong is Chloe. She celebrated her 1st birthday the other week and what a party that turned out to be (more booze available than at a 30th!). She had her party frock on proudly and loved all the attention that everyone gave her. Such a spoilt little lady! Somehow we squeezed most of our friends and family into our house, along with 12 babies. The singletons and newly weds hid safely in the kitchen, probably one the best forms of contraception was to see the carnage by these wee people created. Our mates Ish and Amy even made it back over to the UK to help celebrate Chloe’s birthday and our first year as a mum and dad. Gold!

Unfortunately we’re going to miss their wedding in Oz this December as it’s my busiest time of year but we will be leaving the shores of Scotland on Boxing Day and heading back to Australia then for a nice three week jaunt. Not long to go now until we visit my folks in Cowra then off to the coast, just south of Sydney, for a week and I’m getting really pumped about arriving back home with my daughter on show. As much as I’m looking forward to baring my white chest on the beach, it’ll be great to watch Chloe playing with her cousins in the sand. We will literally be travelling from 4 degrees to 40. Not sure how my pasty skin will endure and handle this foreign climate though…

I will, however, be here in the bonny lands for when my mate, best man and fellow “aussie living in Scotland with a Scottish misses”, Jason and Jennifer are expecting the arrival of their first baby. Unreal - bring on the baby boom!

Thanks for the emails and messages – keep them coming in. I’m currently updating this as I get rocked from side to side on the Belfast-Stranraer ferry on my way back to Glasgow. A city that has just been voted in the Top 10 destinations for 2009 in the Lonely Planet Guide:

“Forget about castles, kilts, bagpipes and tartan. You come for the cocktails, cuisine and designer chic (plus the legendary native wit) ... Scotland's biggest city has shaken off its shroud of industrial soot and shimmied into a sparkling new designer gown." Glasgow is the only British city included in the top 10, an accolade embraced by Steven Purcell, leader of the city council. He yesterday helped to unveil plans by the Dubai-based Jumeirah hotel group to build the UK’s first "six-star" luxury hotel in the city - a 26-storey tower which will boast 160 guest rooms and suites and 85 serviced apartments.”

The sun is shining and the temperature is crisp. Beautiful!

54. Paella Munching

PHOTOS: Me and my little lady in Majorca; Kas, Chloe and I on the Beach; Majorca; Tom, Anne, Kas and Chloe eyeing up the Boats; Kas and Anne at Dinner; Dressed up for the Hotel; Chloe in her highchair; Back home feeding the Ducks; Chloe leading the way; Ish, Amy and Kas in Royal Exchange Square...

That’s certainly been the longest spell between diary entries. I never planned to take a break from jotting my thoughts but it’s been a nice time to take a step back and evaluate life over the past three years. There certainly hasn’t been a shortage of events worthy of commentating but as the cliché goes, a change is as good as a holiday. I guess that depends on the change…

During the balmy Scottish summer we’ve just endured, I think I’ve managed to get my head around my rising 0.43% PCR result, organised our family trip back to Australia this Christmas, been visited by some very good aussie mates Ish and Amy who are now working and living in Kuwait, travelled successfully to Majorca with my two girls, thought I’d suffered a heart attack, stacked on a few kilos after munching fourteen metric tonnes of paella whilst in Spain and been shocked of some news of a fellow Leukaemia sufferer. As per usual, it feels as though I’m piloting a plane through the eye of a tropical thunderstorm…we’re not short of a few ups and downs.

In my last post in June, 0.43% was the new PCR result. It had gone slightly up from the previous 0.3%. At my six-weekly doctor appointment yesterday, the consultants felt as though the two results were the same. It’s not great for them to move up is any way but there has to be trend of three-in-a-row to make any detailed evaluations. After three separate needles to fill up ten vials of blood, I now have the pleasure of waiting another three weeks for the result of this one. The more I get used to being a dad, the more I get desperate to hear good result for myself and get to the 0.1% gold-standard target. Fingers crossed for September! Since commencing my new med Sprycel in May last year and about the time when Chloe was born, I’ve been a little more susceptible to infections – no one really knows what the reason for this is, as all my blood tests show some pretty healthy results. Anyway, my Doctor has also requested a test to see whether my immune system is being jeopardised in anyway because of my meds. It’ll be interesting to hear these results too.

Our recent trip to Majorca with my two girls and my in-laws was a huge success. Just what the doctor ordered – literally. It was just so good to have a healthy dose of a soft, white beach and some heat once again and enjoy the time seeing Chloe, who evidently started walking properly while we were away, playing in the sand and bullying all the little boys who advanced to close. That’s my girl! It was my first sun-seeker trip ‘abroad’ and as it’s only 2 ½ hours away, it’ll be a regular destination for the future. We arrived home on the Wednesday night and before I knew it, I was back on another flight to London getting back into work, filling myself to the brim with caffeine. The next day I spent too much time in some notorious areas of Glasgow that left me feeling pretty tense and uptight – that was the catalyst to start the heart palpitations that lasted a full three hours…long enough for me to get myself to the docs and get a worthy witness to this incident. Before Kas and I knew it, we didn’t depart the hospital until 11pm after receiving ECG’s, a chest x-ray, blood tests and some waiting room entertainment from some boozy neds. Thankfully they ruled out side-effects from my meds, confirmed I had a healthy ticker and that I needed to spend more time in sunny Majorca and less time indulging on frothy cappuccinos.

I feel my body has just got over the shock I forced it to endure on the 3 peaks challenge – the Paul O’Gorman Leukaemia Research Centre and the University of Glasgow were stoked to see so much cash coming their way and because of the £16k donation, they’ve dedicated a cell sorting machine in our name. Apparently it’s a work-horse in the labs and a piece of kit that is essential. Since then, I’ve also cycled in the 13 mile Glasgow Bikeathon and for some unknown reason, put my name down to cycle in the Pedal for Scotland 50 mile ride from Glasgow to Edinburgh in a fortnight’s time. I really need to get fat belly back on the saddle and start clocking up some miles before lobbing up with my mountain bike on the 14th September…

On the news of a fellow Leukaemia ‘sufferer’, it’s that Adrian Sudbury passed away aged 27 years old recently. He was the man behind the very popular ‘Baldy’s Blog’ website and the man who was extremely unlucky to be informed he was diagnosed with two forms of Leukaemia at one time. He fought tirelessly for two years, gallantly promoting the cause for more bone marrow donors to come forward and even receiving a call from the Prime Minister a few weeks ago. He did some great things and I’m sure his legacy will live on – it’s also another chance for anyone to join the bone marrow registry that has thought about it but not yet signed up and give blokes like this a fighting chance.

Wish me luck for the upcoming PCR result and the Pedal for Scotland - I’ll try not leave the blogging for so long next time…