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

ALMOST HOME

Yikes! Still here. Was hoping to get home on Sunday when I finished my anti viral nebulizer (21 doses over seven days), but haemoglobin dropping smartish and I need blood. So have to wait till I can be topped up before I can go home. In fact hospital would have sent me home yesterday, but I asked to stay in as I am feeling to weak and breathless to cope alone at home. With luck transfusion will happen this afternoon and I will get home this evening. Then I have to be back in HOP clinic tomorrow morning for a bone marrow test. Blimey, it's exhausting. 

The rituximab was finally granted approval and I received my first infusion of that last Friday - luckily without getting any nasty side effects, which are often quite common. I have my second infusion this Friday on the chemo day unit. It hardly seems worth going home - I am going to be in the hospital everyday as it is. 

Miss my garden, and I reckon all the poppies will have come and gone...Luigi and I speak everyday and exhibition going well. This is just a quick update to position myself geographically as lots of people wondering if I have made it home yet. Oh, and also to say that my friend Camilla completed her triathlon in one hour 46 minutes and is on course to raise £500 for leukaemia and lymphoma research, which is brilliant. Check out her Just Giving page to see if she has made it.

Will be back before too long, hopefully with some brighter news. In the meantime my cold is so bad I haven't been able to taste one mouthful of hospital food, which I guess is a blessing! Ciao tutti. tch xx

BLOODS AND NEBULIZER

Hi All,

Still at kings. Was moved off the private ward and onto the haematology ward on Sunday. Apart from better food and free newspaper there wasn't much difference. In fact feel safer on this ward - better to be looked after by specialist nurses. Also this room has a window with a square of blue sky!  I can look up and see scudding clouds, the occasional plane and this morning I saw a handful of swallows darting about. That was a treat!

Two days left of nebulizer. It's exhausting work. Have to have it three times a day, 2.5 hours each session. Nobody allowed in the room while it is being administered. My cold is foul and making me feel pretty lousy. My haemoglobin is dropping again so will have to have yet another transfusion in the next couple of days. Slightly alarming that this haemolytic anaemia seems to be getting the upper hand over the steroids. Still waiting for the ritaximab to get the funding... However, still on course for discharge at the weekend, providing no hiccups occur. So all fingers crossed please!

My friend Camilla is doing her triathlon on Sunday. This is a final shout out to anyone who would like to sponsor her - every pound helps. There is a link to her sponsorship page under the blog entry headed JUST GIVING.  

Meantime I am in contact with Luigi daily. I can hear the vaporettas chugging past as he stands on the edge of the Canal Grande talking to me. I hear the water lapping at his feet and snatches of Italian conversation as people pass by him. I would love him to cook me a big bowl of saffron risotto. I would love to see his face appear round the door of room 14. Dream on. Sunshine at least. Makes my room very hot. There are no fans and the air conditioning is broken. So I lay very still on my bed, while the sun moves round and fills my room with bright and shadows. Luisa went to the house and watered the garden yesterday. She tells me my salmon coloured poppies are out, so too yellow scrambled egg daisies and the second lot of clematis, with big pink and white heads, has started to flower. Typical! And I am stuck in here and unable to see it all...

Ok, going to stop writing as am strapped up to the nebulizer as i am doing this and its all too exhausting. A quick update at least. Internet connection is terrible, so not sure it this will get published. 

No email for three days... for some of you this would be a blessing, but when relying on it for contacts and conversation, its horrible not having access. Big Ciao to you all, thanks for messages and texts. Hopefully next entry will come from home.  Waving and sending love... tch xxx