Saturday, October 18, 2008

55. Birthday Girl









PHOTOS: Chloe's 1st Birthday Cake; Opening her Presents; Girls enjoying the Party; Bobby and Ish; Fellas on the Beers; It's my Party and I'll cry if I want to; Feeding the little Lady; Kas Opening Presents...

I’ve been unsure of what to think of my PCR result I received a few weeks ago. This time last year, I was getting tested every few weeks – I was just moved onto the highest possible Sprycel dose, so the docs wanted to be assured that they were doing the right thing. One year on and I’m only heading back to see the consultants every six weeks and having PCR taken every three months. More emphasis on each one now as you can imagine! So with everyone so keen to finally see how well I’m coping with the high dose, it was with an email I found out that the rollercoaster was set to continue and it’s still not time to get off…

0.67%. Three months ago it was 0.45% and the previous was a record breaking (for me anyway) 0.3%. I was sure this was bad news and only desperate measures could be put in place to avoid any further damage. I felt I was getting more susceptible to viruses and that maybe my immune system was being jeopardised by something of my own wrongdoing. I felt totally fine, healthy and fit, so I certainly had no explanation on why there is an upward trend. Too many Christmas mince pies already?

After a few weeks of deliberating, mainly about hounding the docs for an explanation, I held my tongue and awaited my appointment last Tuesday. I usually get seen by either one of two main consultants, so I was slightly taken aback when another haematologist grabbed my notes and loudly called out my name in the waiting room. I wandered into her consulting room and as she flicked through my notes, I couldn’t help being nosey and sneak a peak at the notes. All I could make out was “reconsider bone marrow transplant if PCR was above 0.5%”. I could feel myself tighten up and when she said that maybe my other consultant should see me as she needed to “talk” to me about something. I already knew what about…

Talk about a case of over-imagination. Professor Holyoake apologised that I never received the email from her to explain that she is quite happy with the results and not to worry. She looked at my previous 12 PCR results and grouped them into 3’s – the first batch had an average of 2.6%, the next batch was 1.6%, then 1.2% and then finally 0.45%. It’s all about perspective! She would only ever worry is there was a definite 10-fold increase ie; 0.3% to 3% and slightly concerned for a 3-fold increase. As long as my next PCR is under 1%, everything should continue as normal as it has been.

19th October will be three years since diagnosis – I definitely fought hard during the initial few months and year, and since then I’ve pushed on to make life as normal as possible for my family and myself. But even three years on, I still can’t help getting dragged into worrying about my future from time to time. Most of my time is spent living as though I don’t have Leukaemia and it’s not even a conscious decision. Of course there are side-effects from my meds but if I treat them as normal, then everything else in my life will follow suit. I’m aware that I don’t update my blog as often as I used to but revisiting this, forced me to deal with issues that I’ve put to the back of my mind. I live as though everything is fine but I’ve got to realise that I’m treading pretty close to the edge and that my PCR’s are far from optimal. A risky transplant will continue to be the next option, so let’s hope I can keep on this same road for a lot longer.

One of the main things that will keep me going strong is Chloe. She celebrated her 1st birthday the other week and what a party that turned out to be (more booze available than at a 30th!). She had her party frock on proudly and loved all the attention that everyone gave her. Such a spoilt little lady! Somehow we squeezed most of our friends and family into our house, along with 12 babies. The singletons and newly weds hid safely in the kitchen, probably one the best forms of contraception was to see the carnage by these wee people created. Our mates Ish and Amy even made it back over to the UK to help celebrate Chloe’s birthday and our first year as a mum and dad. Gold!

Unfortunately we’re going to miss their wedding in Oz this December as it’s my busiest time of year but we will be leaving the shores of Scotland on Boxing Day and heading back to Australia then for a nice three week jaunt. Not long to go now until we visit my folks in Cowra then off to the coast, just south of Sydney, for a week and I’m getting really pumped about arriving back home with my daughter on show. As much as I’m looking forward to baring my white chest on the beach, it’ll be great to watch Chloe playing with her cousins in the sand. We will literally be travelling from 4 degrees to 40. Not sure how my pasty skin will endure and handle this foreign climate though…

I will, however, be here in the bonny lands for when my mate, best man and fellow “aussie living in Scotland with a Scottish misses”, Jason and Jennifer are expecting the arrival of their first baby. Unreal - bring on the baby boom!

Thanks for the emails and messages – keep them coming in. I’m currently updating this as I get rocked from side to side on the Belfast-Stranraer ferry on my way back to Glasgow. A city that has just been voted in the Top 10 destinations for 2009 in the Lonely Planet Guide:

“Forget about castles, kilts, bagpipes and tartan. You come for the cocktails, cuisine and designer chic (plus the legendary native wit) ... Scotland's biggest city has shaken off its shroud of industrial soot and shimmied into a sparkling new designer gown." Glasgow is the only British city included in the top 10, an accolade embraced by Steven Purcell, leader of the city council. He yesterday helped to unveil plans by the Dubai-based Jumeirah hotel group to build the UK’s first "six-star" luxury hotel in the city - a 26-storey tower which will boast 160 guest rooms and suites and 85 serviced apartments.”

The sun is shining and the temperature is crisp. Beautiful!

1 comment:

brendie said...

hi matt,i wanted you to know,that i,ve had cml for 14 years this
christmas,always on treatment
including an autograft transplant
in 1995,and i still get nervous on my monthly chats with the consultant.i don,t think that ever leaves ,but neither does the zest &
appreciation for life.my dearest aim
was to see my girl grow up,she,s 25