Photos: Newly pregnant Lorna with Colin and myself; My mate Ish with the world's largest coffee; Karen and her Papa Andy; Karen's mum Anne and Andy...
What a month. As usual, we’ve had to keep on our toes and ready to take on the next challenge that’s thrown at us. Most months we’ve dealt with things quite well, taken it on the chin and got on with it as soon as possible. I’ve never been one to dwell on things too long. But this one seems to have been more emotional than others.
It’s easy for people to feel their own problems to be more important than the next – that’s just human nature. It’s so easy to get caught up with what’s in front of you and you could be forgiven for losing sight of what others have to contend with. I know I’ve been guilty over the past couple of years of this…it’s only occasionally I have to be reeled in and be reminded that there are others in a much more precious and worse off situation. It’s also fact that everyone doesn’t deal with similar situations in the same way. For a few good reasons, this month has been a bit of a learning curve and an eye opener…
I’ll start off with the news of my latest PCR. I never expected anything from my test – the blood was drawn only after I’d had 2 weeks on my new meds (Sprycel) and a week off as I was in hospital. If anything, I was expecting a steep rise that we would have to catch up with. But, surprisingly, the news was pretty easy on the ear. After being “stuck” at around 2.5% for 10 months, it was great to hear that this PCR test came back at 1.5%. I knew the meds were 400 times stronger than Gleevec but I still didn’t expect a change! And it wasn’t me thinking in pessimistic ways, hoping for a good result so as I don’t get disappointed…I genuinely thought we’d have a battle on our hands. I was, however, sternly warned by my Consultant not to get carried away with this result and for me to continue to keep my eye on the ball. She wants to see a bigger result than this (obviously)…so we need the 3 month PCR test to be back at 0.9% or lower. The levels are heading in the right direction, which is great but I also need to keep willing it even further down.
As my last post mentioned, the docs will be conducting another search for a suitable bone marrow donor in case I don’t fair too well on the new meds. Since then, I received a great email from a guy in the Orkney Islands who had organised for the Anthony Nolan Trust to come up to them and host a Donor Clinic. They would have been happy with 20 people…but they managed to get well over 100! Such a great result for a small community. I’m in awe of work like this – as I said before, it’s very easy for other’s to get caught up in their own issues and feelings. This guy did this event off his own back – at least now I’ll have another 100 potential donors for my search. I’m stoked at some of the things people have done my cause since diagnosed in 2005…(even my father-in-law who went to collect a pizza yesterday, ended up giving blood at the local “Blood Bus” while he was out).
I’d hate to be left without a donor, not do well on my new meds and miss out on any precious time with my wife and my wee one due in September. A thought I push to the back of my mind quite well but still a thought that can surface occasionally. With work like this, hopefully I can lose this thought all together…
On top of all this, Karen’s Papa Andy unfortunately passed away last week. Such a great man – with a big friendly smile, a glass of whiskey in his hand and a lot of love to give for a “hard” man, there wasn’t too many people that he didn’t get on well with. Only two months before, he was the “go-to man” burning up the dance floor at his grandson Gav’s wedding, more than me (only just!)…and it was very sad to see that his time was up. I’ll always remember Andy for a Scottish accent thicker than any I’ve ever come across and the way he sang “Waltzing Matilda” at any family event to prevent me from home sickness. So heartbreaking to see him miss the birth of his first great-grandchild by only a couple of months – I think that is what has hit Kas pretty hard. She had a lot of love and respect for him. What a legend…he will be sorely missed by the many people who attended his funeral yesterday…
So, as you can see, it’s been month to keep us on our toes. I’ve also managed to keep myself busy with my work, getting my fitness back and doing the Scottish sun dance. After playing tennis a week ago, I know I’ve got a bit of work to do to get anywhere near where I was before Pneumonia (fitness that is…not waiting for the clouds to part). My fortnightly appointment has also thankfully been moved to every 3 weeks. I’ll be back to see the docs on August 7th for my very important 3 month PCR test – the big one! Hopefully by then, they’ll also have some news on the worldwide donor search. I may even get matched up with an Orkney Islander now…
Thanks again for the messages and all the emails! Well done to my good mate Ouso too, who completed the London Bikathon for Leukaemia Research last week. Good effort mate! Happy Birthday also to my sister Tash...27 last week, she's catching up! Happy birthday wee sis.
* Never too late to be a Bone Marrow Donor – they’re all desperate for young fit blokes (sounds like a few girls I know…) Check out the links on the right of the page!
It’s easy for people to feel their own problems to be more important than the next – that’s just human nature. It’s so easy to get caught up with what’s in front of you and you could be forgiven for losing sight of what others have to contend with. I know I’ve been guilty over the past couple of years of this…it’s only occasionally I have to be reeled in and be reminded that there are others in a much more precious and worse off situation. It’s also fact that everyone doesn’t deal with similar situations in the same way. For a few good reasons, this month has been a bit of a learning curve and an eye opener…
I’ll start off with the news of my latest PCR. I never expected anything from my test – the blood was drawn only after I’d had 2 weeks on my new meds (Sprycel) and a week off as I was in hospital. If anything, I was expecting a steep rise that we would have to catch up with. But, surprisingly, the news was pretty easy on the ear. After being “stuck” at around 2.5% for 10 months, it was great to hear that this PCR test came back at 1.5%. I knew the meds were 400 times stronger than Gleevec but I still didn’t expect a change! And it wasn’t me thinking in pessimistic ways, hoping for a good result so as I don’t get disappointed…I genuinely thought we’d have a battle on our hands. I was, however, sternly warned by my Consultant not to get carried away with this result and for me to continue to keep my eye on the ball. She wants to see a bigger result than this (obviously)…so we need the 3 month PCR test to be back at 0.9% or lower. The levels are heading in the right direction, which is great but I also need to keep willing it even further down.
As my last post mentioned, the docs will be conducting another search for a suitable bone marrow donor in case I don’t fair too well on the new meds. Since then, I received a great email from a guy in the Orkney Islands who had organised for the Anthony Nolan Trust to come up to them and host a Donor Clinic. They would have been happy with 20 people…but they managed to get well over 100! Such a great result for a small community. I’m in awe of work like this – as I said before, it’s very easy for other’s to get caught up in their own issues and feelings. This guy did this event off his own back – at least now I’ll have another 100 potential donors for my search. I’m stoked at some of the things people have done my cause since diagnosed in 2005…(even my father-in-law who went to collect a pizza yesterday, ended up giving blood at the local “Blood Bus” while he was out).
I’d hate to be left without a donor, not do well on my new meds and miss out on any precious time with my wife and my wee one due in September. A thought I push to the back of my mind quite well but still a thought that can surface occasionally. With work like this, hopefully I can lose this thought all together…
On top of all this, Karen’s Papa Andy unfortunately passed away last week. Such a great man – with a big friendly smile, a glass of whiskey in his hand and a lot of love to give for a “hard” man, there wasn’t too many people that he didn’t get on well with. Only two months before, he was the “go-to man” burning up the dance floor at his grandson Gav’s wedding, more than me (only just!)…and it was very sad to see that his time was up. I’ll always remember Andy for a Scottish accent thicker than any I’ve ever come across and the way he sang “Waltzing Matilda” at any family event to prevent me from home sickness. So heartbreaking to see him miss the birth of his first great-grandchild by only a couple of months – I think that is what has hit Kas pretty hard. She had a lot of love and respect for him. What a legend…he will be sorely missed by the many people who attended his funeral yesterday…
So, as you can see, it’s been month to keep us on our toes. I’ve also managed to keep myself busy with my work, getting my fitness back and doing the Scottish sun dance. After playing tennis a week ago, I know I’ve got a bit of work to do to get anywhere near where I was before Pneumonia (fitness that is…not waiting for the clouds to part). My fortnightly appointment has also thankfully been moved to every 3 weeks. I’ll be back to see the docs on August 7th for my very important 3 month PCR test – the big one! Hopefully by then, they’ll also have some news on the worldwide donor search. I may even get matched up with an Orkney Islander now…
Thanks again for the messages and all the emails! Well done to my good mate Ouso too, who completed the London Bikathon for Leukaemia Research last week. Good effort mate! Happy Birthday also to my sister Tash...27 last week, she's catching up! Happy birthday wee sis.
* Never too late to be a Bone Marrow Donor – they’re all desperate for young fit blokes (sounds like a few girls I know…) Check out the links on the right of the page!
