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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

CHANGE OF DIRECTION

Dear all,

After last positive post, ' fraid I have to report not such good news. Been a difficult week just passed. Spent 4 out of 5 days in the day unit having various infusions and transfusions ( 10 hours on Friday ...) I have developed a condition known as Auto Immune Haemolytic Anemia, which basically means my own immune system isn't recognising my red blood cells and as a result is destroying them (how very cannibal like..) leaving me, tired, breathless and anemic. Hence all the blood transfusions (3 this week). I have been put on a high dose of steroids too to try and sort the problem. So soon I will probably have a moon face. Oh great! Hospital are trying everything to keep me at home, which I really appreciate. I so don't want to have to go back inside. But one big concern is the steroids could reactivate the BK virus (spasming bladder) which would mean another trip into hospital and god knows how many weeks of pain. So fingers crossed please that this scenario doesn't happen!

Also have been struggling since December with very bad tinnitus and hearing loss, probably due to the various toxic medications I am having to take. After months of waiting I finally got to see a hearing specialist this week. Had various tests done. It was confirmed that some nerves are damaged (permanently they say, but we'll see) and I have mild to moderate hearing loss, which means I will be given hearing aids. Lordy, old lady, or what!

I am back in HOP clinic tomorrow at 9.30 (stands for Haematology Outpatients by the way) for more bloods and probably some immunoglobulin. This is yet another blood product which I have been infused with all week (5 hour sessions hooked up to a drip stand and "giving machine"). Immunoglobulins help lymphocytes fight infections. My immunoglobulin is low at the moment, hence the infusions. Its really has been a tough week. Missed most of the lovely spring sunshine too. Though did catch a great sunset on Friday night which was a joy to see.

It's Sunday night. Luigi and I just eaten great roast chicken. He is going back to Italy this week, which is making me very sad. He will be irreplaceable. Don't know for how long he will be gone for, but it's the biennale in Venice, opening in three weeks time. So my guess is quite a number of weeks. I will just have to get used to being independent again...and thanks in advance to north and south London friends who have already signed up for shopping, cooking, and companionship. I appreciate your support so much. Gonna need it over the next weeks...

Bed for me now. Hope everyone well. Thanks for all blog comments. Lovely to hear from everyone - north, south, east and west. Lets hope first week of May brings sunshine and my immune system starts to sort itself out. Love to all. Blue skies. Back soon. tch xxx

QUICK CATCH UP...

Ciao Tutti,

Cant believe a week has sped by since I last wrote a blog entry.  Life beginning to turn with a bit of a pace...

I didn't have to go back in over last weekend for rehydration. Phweeee. Managed to swallow enough water just to keep the figures low enough for the hospital to say I could stay at home. But still having to try to drink 2 - 3 litres of water  a day, which is virtually impossible. So always running a risk that they may  call me back in for "fluid input".  Last Friday my bloods dropped rather dramatically, everything falling to below the plimsoll line (well, at least thats how I envisage it). So spent a fretful weekend stressing that the leukaemia had come back and the bone marrow had failed... Bad dreams. Oh dear. Still so very fragile emotionally. One small chink can set me off!  Anyway, Tuesday came and bloods had bounced back up again (lets hear it for Baby Number One...) and my bone marrow result from 3 weeks ago showed completed remission. So I buzzed out of HOP clinic.  The sun was out, the sky was blue and Luigi and I shuffled along to Ruskin Park (to be fair, Luigi walked and I shuffled) and sat on an old wooden park bench, deeply carved with names and dates. Everything just on the edge of bursting into flower or leaf. I just drank it all in. It was one of those "good to be alive" moments.

I am still struggling with fatigue. The hospital tell me I will do for quite some time to come. Getting up is still extremely hard work. And doing virtually anything can knock me for six - from making a sandwich for myself, having a bath, even getting dressed. I am slow and grey. A bit like a sloth I guess.

But, slowly slowly catch your monkey. I have seen some more friends. Tea time visits are good. I am at my most alert then. And seeing people really helps me to climb out of my hamster wheel. Very good medicine.  Thanks to everyone who has come round - bearing wonderful gifts: smoked salmon bagels, french macaroons, home made scones and marmalade, bunches of flowers. I am spoilt.

Today I managed three times round the roundabout. Decked out in wellington boots and raincoat, as there was a massive downpour earlier. Then clean spring sunshine. Blackbird singing as I walked around (walked, not shuffled, this time). I can manage the stairs a bit better now too. Some days easier than others.

HOP clinic again tomorrow, so I need to swallow some more water to keep my kidneys flushing through. Don't want a bad result.

Your messages of support have been fantastic. So great to know you are all out there and still on the journey with me. I wish I could respond to all of you individually. My apologies that I don't. I would be tied to this computer. But you know how much it means to hear from you. Keeps my (sometimes flagging) spirit going - and for that I thank you all.  For those of you not in London - we are about to hit spring big time. Magnolias are budding and ready to burst forth. Mad pink cherry will soon be lining almost every street. Armies of daffodils are standing proud.  I hope we are blessed with a brilliant bright spring. We all deserve it. Wherever you are reading this, hope the sun is shining for you.

A presto! High fives! And a whole lotta love round the globe.

Back soon tch xxx

ONE STEP FORWARD TWO STEPS BACK...

Ciao tutti,

Sorry such along time for blog to appear...I'd like to say its because I have been having a ball, but sadly, that's not true. I am exhausted most of the time. Spend too much time in bed sleeping (least that's what the hospital say) and when I am up and dressed I just get whacked out really easily. I have been doing small domestic chores: a little bit of ironing one day (I find ironing very relaxing...seriously) 15 minutes in the garden pruning - that gave me great pleasure - over a couple of days. Emailing short messages, paying bills, walking up and down stairs to try and strengthen my leg muscles, which are still ridiculously weak. I am in Hop Clinic two or three days a week. The clinic sessions really wipe me out: X-rays, intravenous fluids, blood tests etc and a lot of hanging about in between treatments. They really are pigs-of-a-day. I get home normally between five and six and just go straight to bed.

So that has been my life really since my last blog. Slow and steady and still painful with my continuing bladder infection. I feel guilty about spending so much time in bed. But it is very easy just to pull the duvet high and fall asleep. The hospital say iTs chronic fatigue syndrome and the less i do, the harder its going to get to do anything. so I know I have to make a bit more of an effort to engage with the world. But blimey, its hard work!

This week though I have at last started to see some people, which has been great and taken me out of my little world. Very therapeutic. But very tiring. Thanks to those people who have come by, I have enjoyed your company big time.

It's 8pm now and I am already in bed (so cosy!). Tomorrow I have clinic. Have to be there for 10am. Tomorrow too they might have to re-admit me. My kidneys have been playing up and not working properly. I have been drinking like a fish, 2 /3 liters of fluid a day (that's hard work) but it doesn't seem to have done the trick. One of the immune suppressant drugs they have me on is very toxic for the kidneys. It seems mine are taking a battering; so I may have to go in for 48 hours or so of intravenous liquids...not happy about this. But will just have to grin and bear it if it is the case.

That's all for now. Wish I had the energy to write more and to write better. I guess it will come back at some point. If I am at home this weekend I have a plan to do some more pruning. Fingers crossed. Big hallo and love to both hemispheres. And hopefully get some more visitors round very soon. tch xxx

PS Gill, great to get your message. Am unable to reply as this blog doesn't seem to have that facility. If you would like to email more, please go to my website, www.tessaholmes.com and send me a message from there, that way I can reply to you. Forty years...