Wednesday, April 08, 2009

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 7th, 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!


Anonymous said...

Glad to hear the PCR is getting lower :)

you are now lower than my last of 0.2% which is up from my last one, so hopefully just a blip


Nancy said...

Hi Matt,

My name is Nancy Di Carlo, I was diagnosed CML 15 days ago. I am still shocked and depressed. I was feeling a little tired, that's all, I am a CPA (accountant) and I related my lack of energy to the tax season. I went to a plastic surgeant to have a lipo, they run a blood test and that was the beginning of the nightmare. I'm 47 always healthy, first time in my life I am ill, and for ever. I am so scared. I am already under Gleevec. I have fever almost every night. How did you get through this disease emotionally?

I live in Fort Lauderdale, FL.


Anonymous said...

Miss seeing updates - hope it means that you are too busy living large!

Anonymous said...

Hey Matt, are you not updating your blog anymore? Hope things are going well for you and the PCR's are coming down. I'm waiting on my latest PCR test to come back. Waiting has never been my strong point lol but am assuming all will be well! Hope you're good and enjoying the Scottish summer.

Cheers, Stephanie (Melb Aust)