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Hallo All,

 Quick line just to say that I am currently in HOP Clinic and I have been told that today I will be re- admitted to hospital. My haemoglobin is dropping at quite a fast rate and I need a big blood transfusion. Problem is I have antibodies in my blood which makes it difficult for them to match me and at the moment they cannot find any blood for me...hope they find some soon! Fingers crossed this will just be a twenty four hour/ weekend stay. I will be on an open ward ( been on it before and it's the pits, so very unhappy about this aspect), so hope I don't pick up any infection. Looking forward to getting home asap.

Luigi's Venice exhibition going well. Wish he was here.

LATER UPDATE

Have a stinking cold and swabs that they took on Thursday have come back positive with a virus, called RSB so I have been told that my 24 hours has been extended to a minimum of seven days while I am given a strong nebuliser (3 times a day) to clear up the chest infection...oh dear. Very unhappy about this; but nothing to be done except get on with it. I am in a private ward in a single room, at least I am not on the open ward. Haematology wards are all chockablock so don't know how long I will be on private ward for. Nice bathroom and free newspaper. Room with a view? Ha! You gotta be joking...room with another brick wall. What is it with Kings and brick walls!

Will write again soon. Ciao ciao tutti. tch x

JUST GIVING

Dear All,

My friend Camilla, after months of training, is taking part in the Blenheim Palace Triathlon on June 9th to raise money for Leukaemia and Lymphoma Research (Official sponsors of the Triathlon).  If anyone feels like supporting her and a worthy cause, please click onto the link: http://www.justgiving.com/Camilla-Sheldon1  thank you!

Meanwhile, this week my bloods are up and my haemoglobin is almost back to normal, though the consultants have decided that I am going to have to have the Ritaximab - its an all day infusion, possible next week.  I guess its the belt and braces approach...

Today (Tuesday) I am off to Guys Hospital for another hearing assessment/fitting for my hearing aids. Though to be honest, I don't think I need them anymore, as my hearing has improved over the last few weeks (possibly down to steroids).

Luigi is still here, sorting out the Venice exhibition - but leaves in the next couple of days... The weekend saw me visit Havelock Walk Open studios (walked down the hill and up again!), the garden centre (bright red geraniums now adorn my garden in lichen covered pots) and a visit to Sainsbury's - first time in over five months.  Big improvement.  It feels so good just to be doing ordinary things. But oh dear, and where did the sun go?

Waving to you all and love. Back soon tch xx

UNEXPECTED VISITOR

Ciao Tutti...

Thrilled to write that Luigi flew back to London yesterday! What a surprise! He is here for a few days to sort out stuff for an exhibition he is hoping to organise in Venice at the end of the month. Lovely to have him home, even for a short time.  Next week I will be alone again. Had eight days without him. The house is so quiet. And I miss him big time. Quite hard work being alone but managing.  It is amazing how quickly one grows dependent on someone. But rota of friends to visit has worked a treat. Thanks to everyone who has come by. Some delicious meals. Its also quite a relief not to have to speak all the time in Italian!  Starting to miss work.  Its Havelock Open Studios at the moment. I had hoped to participate, but impossible. Just not enough energy to get work together.  Do not want to turn into a couch potato but find myself watching a lot of afternoon tv - most of which is dire.  Managing to do daily 'roundabout exercise'. 6 circuits the other day. Definitely feeling stronger.

Hoping to make a visit to the garden centre in the next couple of weeks to add a splash of colour to what is still basically a very green garden.  My clematis is almost there - full of buds - but needs some sun! Poppy heads starting to come up too. Wild life all still flourishing. Robins busy nesting. Woodmouse out every evening, scurrying about and munching on bird seed.  However, I have a house mouse in the kitchen, which I don't feel so fond of... have tried humane trap, but its hopeless, so have had to get an old fashioned wooden mouse trap - complete with cheese - maybe it will just get the message and leave before any harm is done...

Pleased to report that the HOP visit on Tuesday revealed a reasonable set of blood results - everything going slowly up again - after a couple of wonky readings. For some reason my platelets started to drop the other day (anything that drops sends me into a spiral of panic), but have picked up a bit, though still below normal.  I had a blood transfusion 9 days ago - the Auto Immune Haemolytic Anaemia still munching my red blood cells - but not needed another one since and my haemoglobin reading is a bit healthier - though still don't know if the steroids will sort out the problem. Not sure how long the consultants will wait before they decide whether or not I need the Rituximab.  I hope the steroids work. My poor body is so stuffed with medication - I can't bear the thought of more stuff to be pumped inside me.  I am back to the hospital tomorrow, this time to the chemo day unit, to have another infusion of something called Cidofopher (definitely spelt wrong), which is supposed to help with my bladder and the BK virus. 3 hours infusion time.  If I'm lucky I'll be home by 2pm.

Fergie gone. End of an era at Old Trafford. But a good way to go out - holding high the 13th Premier League Cup.  Scholes gone too.  Hope Rooney stays.

Off downstairs now to make a cup of tea and get outside for my daily walk.  Hope everyone well. Special mention to Somerset /Devon posse who have had to endure snow and gales over the last couple of days. They say we are expected a "flaming June". Lets hope its true. Greetings round the globe. Catch up with some of you very soon.  tch xx

BANK HOLIDAY MONDAY

Ciao Tutti,

just been in the garden doing a bit of gentle pruning and tying my clematis plants, first two of which are close to blooming.  Seems everyone has gone out for the day...the place is so quiet.  Feel rather uninspired to write. Very tired. Probably having blood transfusion tomorrow as haemoglobin is low - it will be another 5 hour session (and the rest, always lots of waiting around).  Last Friday was a six hour day - a 3 hour infusion of stuff to help with my bladder (still not sorted, and still pretty damn painful) plus blood tests and my pentamadine nebuliser inhaler of filthy bitter stuff to stop me from getting pneumonia. It was a full on and I was exhausted by the time I got home.

Best news to report is that I had a stay of execution as far as Luigi is concerned - he didnt go back last week, but goes tomorrow instead. So we have had a few extra days together.  I have just printed out his easyJet boarding pass. I wish I could have printed two.  I would give a lot to be flying back with him.  I think the earliest I will see him again will be some time in June. So a long haul to be undertaken.     And a new chapter to start.  Thank god I can make it up the stairs on my own now!

Steroids have given me a bit of a hamster face. They also stop me from sleeping and make me feel sick. So nice bunch of things.  Not sure yet whether they will be enough to sort out this auto immune problem. The hospital have had to apply for funding for the next lot of drugs if the steroids don't work. Something called Rituximab which helps in 85% of cases. So that will be the fall back position. But I am keeping my fingers crossed that the steroids do the trick

A little late in the day to celebrate, but united back in their rightful position. Though played pretty miserably since retaining the league. And loosing to Chelsea was dire. But hey - we got the points that counted!

Dull blog. Sorry. Dull head. Luigi just come home and is ferreting about in the fridge...

Thanks, as ever, for lovely positive blog comments, emails and texts. Will be in touch in the next couple of days to all those who have said they will be around for shopping/visiting etc etc. Switching on support systems!  Hope your bank holiday is the scorcher they predicted - not so here, but the sun is vaguely out and from my window I can see shadows falling across the daisies.  Back soon.  tch xxx