Full details to follow very soon !
Wednesday, May 28, 2008
Living Life - For Lizi and Sam
Tonight was the CF Trust Breathing Life Awards.
Full details to follow very soon !
Full details to follow very soon !
Monday, May 26, 2008
Bank Holiday Weekends and 7546ish Kcal !
I love Bank Holiday weekends. I love them even more when I'm feeling really good and able to enjoy them to the max.
I woke up early on Saturday (not that unusual for me) but actually got up and going by 9am (almost unheard of!). I made the most of the early morning sunshine and took a slow walk to the village shops which are just 100 metres or so down the road. After visiting the Post Office, Bank, and Butchers I was feeling rather smug/proud so popped into the Bakers and treated myself to a cake (or 3).
Saturday evening was spent babysitting my nephew - the first time that we'd had the honour of looking after baby Thomas since he was born back in December, and it was a doddle as he slept the whole evening without making a peep. I somehow think we might have got lucky...!
On Sunday we headed over to Oxford. Sally had booked a room at the Malmaison hotel (http://www.malmaison-oxford.com/) which is housed in a renovated Prison! They've kept many of the original "Prison Features" - the rooms in "A Block" are the actual prison cells (slightly bigger now though), complete with original Cell doors !
It was an amazing hotel, and I could have spent hours photographing the place, but Apparently we hadn't gone all the way to Oxford to spend the entire time taking photos' of the hotel, so here is just a taster of the ones I took:
In the space of a 24 hour period, I consumed approx 7546 kcal. I put this mainly down to the high dose of steroids that I'm still taking, but even so, I was mighty proud of this achievement. Highlights included:
I woke up early on Saturday (not that unusual for me) but actually got up and going by 9am (almost unheard of!). I made the most of the early morning sunshine and took a slow walk to the village shops which are just 100 metres or so down the road. After visiting the Post Office, Bank, and Butchers I was feeling rather smug/proud so popped into the Bakers and treated myself to a cake (or 3).
Saturday evening was spent babysitting my nephew - the first time that we'd had the honour of looking after baby Thomas since he was born back in December, and it was a doddle as he slept the whole evening without making a peep. I somehow think we might have got lucky...!
On Sunday we headed over to Oxford. Sally had booked a room at the Malmaison hotel (http://www.malmaison-oxford.com/) which is housed in a renovated Prison! They've kept many of the original "Prison Features" - the rooms in "A Block" are the actual prison cells (slightly bigger now though), complete with original Cell doors !
It was an amazing hotel, and I could have spent hours photographing the place, but Apparently we hadn't gone all the way to Oxford to spend the entire time taking photos' of the hotel, so here is just a taster of the ones I took:
In the space of a 24 hour period, I consumed approx 7546 kcal. I put this mainly down to the high dose of steroids that I'm still taking, but even so, I was mighty proud of this achievement. Highlights included:
- 4 Krispy Kreme doughnuts (in the space of 6 minutes)
- 18 Millies Cookies (assorted flavours)
- 16oz Rump Steak and Chips
- A whole Pizza Express Pizza (even the crust!)
- Crispy Duck Pancakes
- Banoffe Pie
- Continental Breakfast
- ..and much more!
In between eating, we spent time strolling around the city viewing the sights and doing a little shopping along the way. I also finally managed to find a suitable shirt and tie combo to wear to the Breathing Life Awards which are now just a few days away - I cannot wait !
I really enjoyed Oxford, it's a beautiful city with so much to see. I'd like to go back again sometime soon as there is so much more to see AND I didn't get to visit the Ben's Cookies factory this time :(
Tuesday, May 20, 2008
It's just another Manic....Tuesday
Where do I start?? Today started off as one of days that was clearly going to be "One of THOSE days"..
An approx timetable of this mornings events would read something like this:
The Morning - "PANIC"
6:00am : Wake up to be told hot water tank has a 'leek'. Last time we had a 'leek' it turned into a flood. Panic Panic Panic.
6:15am : Phone British Gas to send a plumber round, but they can't give an arrival time except that "it'll be sometime between 8am and 6pm". Grrrr.
6:20am : Remember that I've got an appointment at the Brompton this afternoon and won't be around for the plumber if he comes after 12:45pm. Panic Panic Panic.
6:30am : Send text to my sister asking if she could house-sit for the plumber this afternoon.
7:00am : "Ring-Ring" - Sister phones, but she got plans this morning and won't be able to get here until 1:30pm at the earliest. Panic Panic Panic Panic!
7:30am : Hit the "Travelator" for my daily exercise. 1 mile in 22.34 mins. Proper slow today, but it's another mile ticked off (and without hurting myself this time!).
8:30am : Due to afternoon hospital appointment, am working from home this morning, but can't connect to network so cannot do any work. Panic Panic.
9:15am : Work phone to say network connection problems sorted. I'm not sure if this is good or bad news...!). No Panic though.
10:00am : GP Surgery phone to advise that one of the items on my repeat prescription no longer exists. Panic Panic Panic.
12:15pm: Plumber arrives. Hooray ! It's the same chap that came last time we flooded our house. He took his shoes off without being asked, so I made him a nice cup of tea.
12:20pm : Plumber has fixed problem. He tightened a screw or something. Feel slightly stupid at having called a plumber out.
12:50pm : Get away on time for the Hospital and phone sister to advise that she no longer needs to house-sit.
12:52pm : Get half way down the drive and realise I've left the bedroom window open. B*llocks. Have to go back in and shut it. Knackered Knackered Knackered!
12:55pm : I once again leave the house.... Panic over....
An approx timetable of this mornings events would read something like this:
The Morning - "PANIC"
6:00am : Wake up to be told hot water tank has a 'leek'. Last time we had a 'leek' it turned into a flood. Panic Panic Panic.
6:15am : Phone British Gas to send a plumber round, but they can't give an arrival time except that "it'll be sometime between 8am and 6pm". Grrrr.
6:20am : Remember that I've got an appointment at the Brompton this afternoon and won't be around for the plumber if he comes after 12:45pm. Panic Panic Panic.
6:30am : Send text to my sister asking if she could house-sit for the plumber this afternoon.
7:00am : "Ring-Ring" - Sister phones, but she got plans this morning and won't be able to get here until 1:30pm at the earliest. Panic Panic Panic Panic!
7:30am : Hit the "Travelator" for my daily exercise. 1 mile in 22.34 mins. Proper slow today, but it's another mile ticked off (and without hurting myself this time!).
8:30am : Due to afternoon hospital appointment, am working from home this morning, but can't connect to network so cannot do any work. Panic Panic.
9:15am : Work phone to say network connection problems sorted. I'm not sure if this is good or bad news...!). No Panic though.
10:00am : GP Surgery phone to advise that one of the items on my repeat prescription no longer exists. Panic Panic Panic.
12:15pm: Plumber arrives. Hooray ! It's the same chap that came last time we flooded our house. He took his shoes off without being asked, so I made him a nice cup of tea.
12:20pm : Plumber has fixed problem. He tightened a screw or something. Feel slightly stupid at having called a plumber out.
12:50pm : Get away on time for the Hospital and phone sister to advise that she no longer needs to house-sit.
12:52pm : Get half way down the drive and realise I've left the bedroom window open. B*llocks. Have to go back in and shut it. Knackered Knackered Knackered!
12:55pm : I once again leave the house.... Panic over....
The Afternoon (Which in comparison was almost quite relaxing)
Today's outpatient appointment was non-stop - I was on a mission, which involved all of the following :Dietitian, Annual Review Coordinator,
Physiotherapist, Nurse Specialist,
Research Study Coordinator,
Doctor, Professor
and finally the Pharmacist.
As I said in my previous blog entry I've had a lot of things on my mind, many of which could only really be answered by my CF team. I raised a lot of my recent concerns regarding everything from drug doses to Transplantation, all of which were addressed fully and I left feeling that i'd made real progress today.....so I treated myself to a trip down to South Kensington Tube to visit Bens Cookies (If you've never had them, i'd describe them as a cross between a Cake and a Chewy Cookie - I like them so much that I got a box full) before heading back down the M4 to Home and the cookie carnage that awaited...
Monday, May 19, 2008
Look who's back...!
Firstly, apologies for the lack of updates since my last blog... I would go into EVERYTHING that I've done since October 2006, but I could be here a while.... So it's probably best to start afresh from now! (Australia was amazing though...!)
I've also realised how valuable the recording of your daily "musings" can be, not just as an opportunity for the person writing them (eg. ME!) to vent their frustrations or share they successes, but how they also to serve as a permanent reminder of an an exact point in time. It is for those reasons that I've decided to start Blogging again.
This is for you Sam - "You were truly inspirational. Keep dancing on those Kitchen Tiles..."
I've also realised how valuable the recording of your daily "musings" can be, not just as an opportunity for the person writing them (eg. ME!) to vent their frustrations or share they successes, but how they also to serve as a permanent reminder of an an exact point in time. It is for those reasons that I've decided to start Blogging again.
This is for you Sam - "You were truly inspirational. Keep dancing on those Kitchen Tiles..."
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