THE LONGEST DAY

Ciao tutti,

Been out of the loop for too long... Got home on the 11th, and managed two days (both of which where spent in the Hop clinic) before being re admitted on 13th. Have been put in a isolation room on a corridor of the Derek Mitchell Unit (where I had transplant). I am completely cut off from everybody and everything. Usual brick wall, and no slice of blue sky. Talk about dulling the senses. Also have had no access to Internet / email until yesterday. Been a tough old week.

Why am I back in? Loads of stuff going on at the moment. Still struggling with chest infection, which seems to have caused a real problem with my breathing. Walking and generally moving about is very hard work - pulse rate zooms up and I puff around like a very old woman. Unable to talk and walk at the same time.  It's quite scary. I have been put on oxygen, so have pipes constantly trailing from my nose. I have been put through an endless series of tests, including lung ct scans, heart scan, liver ultra sound. Was going to have a bronchoscopy this morning (ten hours of nil by mouth), but it was cancelled at the last minute. I had been laid out on the procedure bed for half an hour, surrounded by a worrying collection of instruments, pipes and pokey things, when the doctor walked in and pronounced  the test was cancelled as results from earlier ct scans suggested that there was no need for further investigations. Phewee, what a relief! Was not looking forward to that process.

I also have a further blood condition which has been discovered  from my bone marrow biopsy. This is called "pure red cell aplaysia" whereby my red blood cells are being destroyed from inside my bone marrow. Seems this is the reason for my need for endless blood transfusions at the moment. More medication required, more stomach injections. Oh dear, it all seems so relentless. I hope they mange to reverse all these problems soon. It can be quite anxious making. 

This afternoon I am waiting for my four hour infusion of Rituximab plus another blood transfusion. Beyond that I am waiting to see Luigi. I hope he is coming back from Venice next week. These last few weeks stuck in hospital have been hard and I have really missed him, despite daily phone calls and sounds of vaporettas navigating down the Grand Canal.  Lots of friends have been to visit (all masked and gowned up), which I have really appreciated. Their bright faces have kept the days moving forward.

Well that's latest news. I am going to try and publish this update, but not sure if it will work. Will write again soon. Can't believe it's Wimbledon already. And today is the longest day. Ha!, so much for flaming June. I did get to glance at my garden the two evenings I had at home last week. Two poppies where still open, organic smoked salmon colour. The second clematis was out with huge flowers of pink and white. Hosta, lavender and wild buttercups everywhere. It looked lovely. Hope everyone is well and enjoying some kind of summer - except of course those of you in Southern Hemisphere who are now mid winter... I am off to make a cup of plastic tea and listen to the radio. Love round the globe. Ciao ciao. tch xxx