Wednesday, January 30, 2008

46. Super Sunday










Photos: Kas and Chloe on the Computer; Mum & Dad on Queen's View; Road to Aviemore in the Highlands; Hiking in Mugdock Country Park; Hills over Inverary; Chloe in her Seat; Boat Docked in Inverary; Bagpiper in the Highlands...
It’s hard to know where to start this one off – I’m feeling surprisingly energised and enthusiastic about so many things right now, so instead of placing them in any order, it’ll probably just come out in an incoherent mess. I’m not sure if it’s because it’s fresh new year that makes me feel as though I’ve got a blank canvas to work with or that I’ve just had a holiday for the past three weeks but I’m trying to make the most of this while I can. And to top it off, the sun is shining in winter UK right now…love it!

My last major catch up with Super Doc was on the 18th December, just before my folks arrived from Australia and when I finished up work for the good part of a month. The long time between doctor appointments eases the mind and let’s you concentrate on other things that would normally have been seen with more importance. I had my PCR taken then and we also discussed a range of things from side effects and fundraising for the new Leukaemia Research Centre – I didn’t want to let the catch up be dominated by bad news and trying to stay optimistic. It’s a tough day on the body and mind walking into the Beatson Oncology Centre, Kas has always noticed a sense of stress that I emit before my appointment. I’ve only noticed I’ll have cold hands, a rarity for me, and that it makes it harder for the vein to bulge and offer a decent supply of blood to be extracted and tested. Obviously the place is full of cancer sufferers, most with a determined face as if they’re trying to show that they can beat these nasty cells that have taken a liking to their cells – I often wonder what they are suffering from, hoping that they will all conquer their illness and get rid of the head scarf that have been forced to don. The ones that shake you up are when a whole family will exit a room with swollen teary eyes, evidently with bad news. Although I’ve had a mixed bag of appointments and thing to deal with, it does however open your eyes up to the reality of what’s going on to others. Witnessing the silent killer at work! And it’s definitely not all bad news either. News of someone’s remission is equally easy to read on the people’s faces who have been obliged to attend the clinic full of people in the same cancer boat. To hear that someone is on the mend is very hard to top…

So, on the back of my observations and outcomes from the Oncology clinics, I’ve finally joined the group who “seem” to be on the mend…my PCR result came back last week. It’s been a fairly bumpy ride on the PCR front – these extremely accurate tests of Leukaemia levels are the deciding factor of your treatment. Since changing from Gleevec to Sprycel last July, my PCR have continued to hover around the 1-2% mark. Good, but not quite good enough. When Chloe was born it jumped from 1.2% to 1.7%...quite scary feeling when I had finally started my family. I then had my meds increased from 100mg to 140mg per day – it seemed quite obvious as the docs were treating someone with a healthy love of burgers or just “big boned”. That did the trick – the PCR dropped from 1.7% to 1% and then the latest result has finally placed it at a very good 0.7%. This now puts me in a tough predicament. I’m pretty stoked that it’s cracked the 1% mark…unreal. But I’ve got to be mindful that it’s gone up in the past after a low result. I’ve had a few champers to celebrate the good result as they don’t come by too often without getting too carried away – stay positive and optimistic is the key! My next PCR test is not planned until around April, my 30th birthday could coincide with news of my dodgy cells moving extremely close to remission. Bring it on.

My Annual Fundraiser is gaining momentum and we’ve just locked in a date for participation - put Saturday June 21st in your diaries because we’re going to need everyone to dig into their back pocket and dish out some cash for a very good cause. The Paul O’Gorman Leukaemia Research building is due for an imminent opening, very exciting stuff as the building will be home to some of the world’s best Researchers, Bone Marrow Transplants, Leukaemia treatments and my Super Doc consultant is the Director. Me and a few Aussie & Scottish mates have decided to take on the 3 Peaks UK Challenge on the longest day of the year – climbing the highest peak in Scotland (Ben Nevis 4,409 feet), Wales (Snowdon 3,560 feet) and England (Scafell 3,210 feet) - 11,180 vertical feet in 24 Hours. Anyone keen to join us, you’re more than welcome…there’s no choice on the donations though ;) The Sunday Mail are running a story this Sunday, funnily enough, about our optimistic venture where we’re hoping to get to a £6,000 total, so it’ll be very good to spread the word.

I’m still waiting patiently to be asked to continue my public speaking on the CML Tour, a nice trip to Oz would go down very well. We just got emailed the feedback from the recent CML Conference held in Edinburgh and I’m stoked to see that I’ve topped the list in the speaker’s rating – 4.8 out of 5…gold! I had made a few gags about my big bald head that must have gone down well on the day…

My folks are now heading back to Australia after a successful tour of the bonnie lands – it’s been great to see them with my wee girl Chloe who changes almost daily. Also good for me and Kas having a few extra babysitters around! The last couple of visits from the folks have been littered with bad news and illness. It was only last June when they were here when they had to see me lying on a hospital bed with Pneumonia. It’s priceless that they got to see me looking better and the PCR heading in the right direction. It makes such a huge difference.

Wish me luck for the appointment next week – my mind should be fairly clear this time as I’ll be having a few beers at Murrayfield watching Scotland play France in the Rugby 6 Nations on Sunday. Thanks for the emails and messages, keep them coming in…

Thursday, January 03, 2008

45. 'Tis the Season








Photos: Me and Chloe; Mum and Kas at Loch Lomond; Chloe; Dad, Mum & Chloe; Snowing on the Scottish Hills; Four Generations of First Born Daughters; Me and Chloe out for a Walk, Church in Killearn...

I’m not really a big boozer anymore…haven’t been able to put much alcohol into my system since I was diagnosed two years ago (and also after a few stern words from my doc...). But as I write this, I’m quietly sipping a nice malt whisky for a couple of reasons, well it’s snowing outside right now, so I’ll make that three reasons. Firstly, it’s still officially festive time so I’ll cheers to another year down and to how good it was to spend another Christmas and New Years with my family, our new daughter Chloe included. Secondly, it’s been a pretty rough time for our friends Colin and Lorna who had their baby girl Eva just three weeks ago. For the past week they’ve spent most of their time by her side in hospital as she was rushed in with a suspected very serious illness. The news came through yesterday; she’s been given the all clear. That’s more than enough reason for me to dust down the crystal whisky glass and top it up with a generous measure of the nectar the Scots are blessed with engineering… And while I’m merrily raising my glass, I’ll also pass on a huge congrats to my brother Nick and Claire who has their second child Eliza recently. ‘Tis the season to have babies it seems…

Finally I have a small window of opportunity to kick of my shoes and have a well earned rest…holiday time! We’ve just spent the day driving carefully through the beautiful Scottish countryside and taking photos in awe at the snow. The sights around this neck of the woods really are stunning. My folks have been given a good show while they’re over here visiting from the scorched land of Australia…a slight contrast.

On news of my meds and current condition, it all seems to be still ok and heading in the right direction. I know I use the word “seems” quite a lot but without many definite answers, it’s hard to know anything for sure when it comes to Leukaemia. On one hand I had been given the report of my lowest ever PCR reading of 1% - the last one taken was 1.8%. It “seems” like it’s going down and heading in the right direction but as the trend of my last ten or so PCR’s confirm, it could go back up at any time. All my Consultant could confirm was that it could be ok if it hovers anywhere between 1 and 2% - she will keep me on this dose and medication Sprycel (Dasatinib) until at least next July/August. That’s when the real decision will be made; persevere on the meds or opt for the Bone Marrow Transplant. With this knowledge of my Consultants timing, I’m going to try and put it to the back of my mind and keep going with everything as normal and make the most of watching my wee girl Chloe grow. It’s happening right before our eyes, so I really don’t want to miss a thing. I should get my latest PCR test back within the week – let’s hope for another 1-2% result. Anything below this would give me reason to top this whisky glass back up, right to the brim…

Everything with Chloe continues to go very well – my mum and dad finally got to meet her which was amazing to see them bond. She’s a little angel and most people seem to think she’s already got me wrapped around her little finger. Not sure whether to admit that or not! Kas is really blossoming as a mummy (that sentence is pretty gay isn’t it?!) – It’s great to see how they get on and really rely on each other. They both have extremely busy schedules and manage to spend a lot of their time with other mums and babies, sipping coffees, swapping stories, singing songs and changing a monumental amount of nappies. A couple of ladies of leisure!

I’ll try and keep the positive theme to this post flowing and give an update on my mate Dave (everyone “seems” to have a mate called Dave…) that’s just undergone a Bone Marrow Transplant in the USA. He spent a few weeks in hospital enduring the chemotherapy treatment, copious tests and needles, new donor stem cells, isolation time, time away from family and a little bit of acute GVHD thrown in – after all this, he managed to make it home to his wife and family for Christmas and is also enjoying good results post-transplant. He’s a real inspiration and I really wish him all the best for his further treatment and recovery.

Visit him and leave a message of support at - http://cml.davidrobertcox.com/

On other news of fellow Leukaemia people (“sufferers” and “patients” seem too negative to use), I was watching Channel 5 on UK television last night and saw that a guy had won the International Best Blog award for his Leukaemia Diary – Baldy’s Blog was written after he was diagnosed with two separate types of Leukaemia. Another inspirational read…

So now I’ve got the next three weeks off work to just spend time with my family and try to relax. Keep the messages and emails coming in, they always give you a reason to put pen to paper, so to speak, and keep this CML Diary rolling on. As someone close used to say, never underestimate the impact you can have on other people…

I’m off to top this empty glass back up.