Photo from Easyjet fundraising...
http://www.anthonynolan.org.uk/index.php?table=pressrelease&id=165&parent=0
I’ve been hoping this rollercoaster we’re on will just keeping on cruising along smoothly and we wouldn’t have to hold on too tight. I’d actually much prefer if I was the one not on the rollercoaster, just like I used to be, an innocent bystander holding the bags. But almost as expected, we’ve got to the top and the ride has to get a little bumpy before it smooth’s out again.
I know it reads a bit weird, I’m not one who usually looks at real life as a metaphor…but the bizarre news I got this week has only left me feeling that this Leukaemia experience is just like a crazy ride.
I had reported late last month that the great news had finally come my way – my PCR test had dropped to the ideal 1.5% and my bone marrow biopsy and FISH test came back negative. Great to see the Gleevec is kicking in and giving us a bit more hope! Only thing is, my regular monthly trip to the docs has left me more than a little confused…I got to hear that my PCR levels were now back up at 7%, and as you can imagine, it’s left me feeling a bit numb. We are hoping these new results are just a blip in the testing machine, as my PCR has been falling consistently since last year – and with a negative bone marrow sample, the results seems crazy. Also it’s crazy because this PCR test was done only 5 days after my 1.5% result came back to me…
So I’ve had another PCR test taken this week and those results should be with me in 3-4 weeks…it seems so long to wait to hear if the last test was a mistake! If it’s not a mistake, and the latest tests confirm the worst news we could hear, then it seems the only way to combat a Leukaemia relapse is to go straight in for a bone marrow transplant. This is a battle which I’m willing to take on but also something to be avoided if the drugs are working well in my body. As usual, we will keep 100% positive with which ever path we are led down and keep fighting these dodgy cells that won’t piss off out of my body.
Other than my metaphoric nightmare right now, everything seems to be going really well. We moved into our new pad on time, it’s been so good to move into a house together than we love so much. It’s also close to some very good mountain biking tracks which I’ve been trying to conquer lately. I’m sure I’ll fit into the biking scene eventually even though my bike almost came apart piece by piece on my first outing…
The aussie’s keep flowing into the bonny lands which is good to see. We had a great trip to Newcastle on the weekend when we went down to watch the rugby, Falcons v London Irish with a few of the guys. My mate Damo also came on down as he was over visiting the cloudy country for the past few weeks.
Also, check out Beefy's link on the right. Ian Botham (English Cricket Legend) is doing a huge fundraising effort in the UK to raise millions of pounds for teenage and young adults with Leukaemia (I'm still young!). I'll be helping him out on Monday the 9th October, so go online and check it all out...
Fingers crossed I have some good news to report soon about the latest results in the coming weeks – the 7% PCR still doesn’t add up, so let’s hope the latest test done today will fill in a few pieces of the puzzle. Thanks for the messages and emails – they’re brilliant, keep them rolling in!
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3 comments:
Matt!
Nothing ever goes smoothly; I hope that this latest hiccup is just a dud test. It was fantastic to hear that regardless of the outcome you are still 100% positive!
I look forward to hearing more good news from you soon, and singing Itsy Bitsy Teeny Weeny Yellow Polka Dot Bikini with you once more!
Ishmael
Hello Matt
Just wanted to let you know that I was diagnosed in July 2001 - finally managed to get Glivec in 2002 - and to cut a very long story short so as not to bore you - I have had several of these 'Blips' where for no apparent reason I go for a check up and they announce that my PCR has gone up - I then feel sick to my stomach and worry for 3 months till my next appointment when they then tell me that it has gone back down to zero and I have done all that worrying for nothing. I have asked my Consultant how this can happen and have been told that sometimes it can be through cross contamination in the lab! Or its just a blip! My philosophy is now to start worrying after my pcr has gone up on two consecutive visits to the hospital - glad to say that this has never happened in the last five years!!! Please try not to worry but I know exactly what you are going through.
Best wishes
Julie Valentine
Hi Matt,
Just wanted to say it was great to finally meet you in person this weekend at the CML Seminar in Manchester. Being diagnosed less than two weeks after you were, you know I watch your case closely. I feel I've known you for a long time already.
I was shocked to hear about your latest PCR results but at the same time relieved to hear that glitches in test results seem to be a rather common occurance. I'm anxious to hear the outcome of your latest test.
Well best of luck to you and Kas. I'll keep in touch by email.
Dave
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