Monday, May 16, 2011

61. Inspiration

Our New Family
Holly's birth
Holly - 1 week
Holly - 4 months
Mum and Olivia our new Niece
Rebecca our new Niece
Me and Kas on our Med Cruise
Kas and Chloe chilling on the Deck
Me in Mykonos
Chloe off for a Dip
Colin, Eva, Chloe and I in Il De Re, France
Chloe and Eva
Papa Tom and Chloe in the Snow
Chloe making a Snow Man
At Centreparcs

I've been inspired again...

I know its been an incredibly long time between posts, my longest ever actually, but a few recent events have made me realise that I have a responsibility as a leukaemia patient, to go on and continue my story.

Firstly, a friend of mine who was diagnosed with CML at roughly the same time (October 2005), Dave Cox, recently passed away. This came as a pretty big shock to me as we had both been prescribed the same meds initially, however his body was unable to tolerate them and he had no other option but to take on a risky bone marrow transplant. He was a real fighter and his blog gave hope to loads of people who were lucky enough to meet him or to read his blog - his legacy will continue to live on undoubtedly.

And secondly, the Leukaemia fundraising committee that I am a member of sent an email two weeks ago to say that no-one showed up for a recent meeting. A no-show to a charity meeting...! So after attending this latest meeting, and my first one in over a year (partly through guilt and also a free diary), I feel a boost of energy and an overwhelming sense of responsibility to help out where I can. My fundraising challenges have been somewhat less strenuous than the 3 Peaks Challenge in 2008, where 15 of us hauled our bodies up the 3 highest mountains in the UK within a 24 hour time frame, however we still raised well over £3k with a Wine Tasting night a few months ago. Much more my style these days...

There are quite good reasons I might add as to why I've been so quiet....none more important than the birth of my second wee daughter, Holly. She's another little beauty just like her older sister Chloe....lucky she looks like her mum! Two girls make being a dad very much a full-time job.

I still remember the PCR result I received in November 2008 of 0.29% (my best result in a long time - anything under 0.1% is considered the 'safe haven') and it's this that made me realise I now have an opportunity to push my CML swiftly to the side and make 'life' a real focus for me. Since then, I would argue that very few people at my work know anything about my on-going condition....apart from my balding head, they wouldn't have a clue. I just say my head is just too big for my hair. So, since this PCR result, I've dedicated copious time to my work and in February 2009 I was awarded with a decent promotion. Since then I have kept the foot down and again been promoted which just shows that if genuine commitment and energy are directed towards anything, anything can be achieved. I am not saying that I am at the top of my game just yet but I certainly have no intention of slowing down until I reach lofty levels at work.

My CML condition continues to puzzle the medical professionals, as I very slowly continue to achieve better PCR results - my latest was 0.011% from last month, so things are looking good for me. I honestly feel the less time I have spent on worrying about what might happen, the better my body has adapted to digesting my strong meds. I know that I am lucky as I have no real side-effects and manage to keep up a 'normal' standard of life. When I re-read my blog posts from 4-5 years ago, I never would have envisioned getting to a stage in my life where I am happily married with two beautiful daughters and a good quality of life. I certainly have been patient and know I deserve this, for as long it shall last, and that is where I realise that I still have a story and a story others with a similar condition could learn from. I really have to remind myself that there are people every day being diagnosed with leukaemia and that means there are people every day shit-scared of what life has thrown their way. So, I shall continue to fight, share my experiences, albeit not as frequent as I would like due to life commitments I can only be proud of, and help those who need some support when the chips are down.

And one final piece of good news, actually two, is the birth of our new nieces (yep, more girls). Nick and Claire had their 3rd called Olivia and Gav and Natalie had their 1st called Rebecca. Awesome!


Anonymous said...

I come often and was so happy to read of the new daughter and your continued good health. All the best to you and your family. Greetings from Montana.

Gumbo Joe said...

Just checked in and was happy to see you are doing well, but devastated about Dave Cox. I used to read his blog regularly, and it was an inspiration (as is your blog) ever since i was diagnosed in 2007.

Congrats on the additions to the family.

I'm still on 800mg gleevec daily, in the safe zone, recently married, expecting first daughter in Nov.

I too sometimes forget about the gravity of our disease, and the news of Dave Cox is definitely a reminder.

All the best

Joe from New York

DAVID HAAS said...

I have a question about your blog. Please email me!

Anonymous said...

Hello matt ; how are you doing these days ? What is yr latest pcr?