STUCK INSIDE

Dear All,

Apologies for taking a long time to update blog. Have been too wiped out to manage tip tapping on my ipad, balanced on my belly at a 50 degree angle in bed...

Current update: have been back in hospital since the eve of January 23rd. I was hoping it was just going to be a 36 hour visit but they took a load of blood cultures, which unfortunately showed some positive results. So I was slapped on to heavy duty IV antibiotics and sent up to Davidson Ward into an isolation room. It was a relief to get out of the Open Ward. Too much coughing and spluttering going on. Sharing a loo and shower between 4 of us. Not good. Especially as one elderly woman had trouble with coordination...

Earliest release date will be Tuesday, if all is well and there is no further sign of infection. However one of the blood cultures was showing a raised marker for CMV. This is a virus that most of us have, but due to my transplant I am not able to fight it. If the marker goes higher they will have to put me on very strong antibiotics. These have nasty side effects. They can also damage the cords. And my cords are still very fragile and immature. So it's a big balancing act. If I start to think it all through and the consequences of not doing or doing something, it all gets a bit scary. I am willing my body to stay well and have the wear withal to fight off infections on its own. Only time will tell. My blood counts are bouncing around like a rubber ball at the moment. Yesterday my neutrophils where 1.01 and my WBC 1.66. So back to being neutropenic again. My haemoglobin has fallen, so maybe due a blood transfusion. Only my platelets are holding their own and slowly improving. Good for my platelets! Something working.

Davidson Ward is very different to The Deryk Mitchell Unit (where I had my transplant) even though they are next door to each other. I miss the DMU (not sure 'miss' is the appropriate term to use). The staff were very friendly. This is a bigger ward = less time. But the auxiliary team is the same, so I do see some familiar faces. One bonus is that I have a small hexagon shape of sky to look at (and grey portacabin type walls). The hexagon sky is covered in netting to stop pigeons from flying down and crapping all over the place. Yesterday the sky was blue and I could see planes flying across. A crow too. Today seems bright with scudding white clouds. The planes are heading to Heathrow. I wish I was heading to Heathrow.

Luigi has returned to his role of "bearer of broth" at midday. He has also filled my mini fridge with mini pork pies, mini babybel, yogurt and apples. Though my appetite is not good at the moment. Still a daily struggle with nausea due to the mountains of medications I have to swallow. Seems my GVHD rash has all but disappeared. So that's some good news.

I hope by midweek I will be back at Grassmount and updating this blog from my iMac. If you are reading this please send a positive thought/ prayer/whatever. This is just the start of the long slow road to recovery so still need your support big time. It will be a minimum of a year before everything is back to normal - maybe even two. But for me, right now, it's one day at a time. The next big milestone I am aiming for is Day 100 (100 days after transplant). Not sure why, but this is a significant date referred to in all the stem cell transplant literature. Today is day 47, so only 53 to go....

Greetings round the world: friends, family and 'almost strangers'. Great to hear from so many people. Hope the snows and rain of the northern hemisphere and the raging fires and floods down under have not taken their toll too hard. Love and high fives. February waiting in the wings... Back soon. tch xx