Thursday, August 06, 2009

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!



7 comments:

Anonymous said...

So pleased to read your up-date and sorry to hear of your brother-in-laws sickness. I get worried when there are no up-dates. Pleased you are enjoying your beautiful wife and daughter and all life has to offer.

annie.kennedy@tiscali.co.uk said...

Matt
Maybe I have this wrong but I was certainly under the impression that there is a fair margin of error in the PCR result so for statistical purposes your value is indistinguishable from 0.1 - only ten-fold moves are significant - in other words 0.1 to 0.01 or to 1.0. Rob Margel's blog also believes the goal have moved to 0.07 - don't get too hung up on a specific value - your PCRs are low and stable - that is very good news. All the best.
Annie Kennedy

Dennis Pyritz, RN said...

Great Blog! You are a credit to the cancer blogging community. I have added you to my blogroll, “Cancer Blog Links” with almost 500 other cancer blogs at www.beingcancer.net, a cancer networking site featuring a cancer book club, guest blogs, cancer resources and more. Please stop by and visit. If you like the site, please consider adding Being Cancer to your blogroll.
Take care, Dennis

Anonymous said...

Hey Matt!
Just wanted to send my love to Karen and her family.
You are a fantastic writer, someone may have made this comment before, but have you ever thought of putting it all together in a book?
Chloe is growing up so fast! She will have to come and visit Jock very soon! I think they would like each other ;) haha.
Give Kas and Chloe a big hug and kiss!
Love Drew's sis - EM

Annie - Steven's mom said...

Great results, Matt. I love your photos too - they are a visual of the fact that life is really going on as 'normal', that cml is not stopping you at all. This is music to me and I so appreciate you sharing your journey.

What a bugger about Gav - I look forward to hearing that he has his cancer running far away.

I hope you get your pcr results when your parents are there and I will be hoping SO hard that its below that 0.1%. That would be totally awesome for that to happen while they is there! :)

Thanks again for sharing.
love and light
Annie
Steven's mom
http://livingwithcml.blogspot.com

flobbergobber said...

matt
good to hear things are going well for you, but awful news about gav. please pass on my best wishes to him.
John T

Anonymous said...

Matt,
Sorry about your friend Dave and I appreciate you and others who have the inspiration to share your story!I found your blog searching for CML resources and would like to add it to our blog directory (link below) so that others dealing with CML can learn from your experiences. However, I wanted to get your permission first. Please contact me at nickv@navigatingcancer.com if you’d like me to add it to our directory.

Take Care,
Nick
https://www.navigatingcancer.com/cancer_blogs