JINGLE BELLS

Hi All,

late late xmas eve blog update - to wish everyone who reads this a very happy christmas time. Full of santa goodies and sparkle. Hope a bit of calm is descending upon you after these last few weeks of mayhem…and hope christmas storms have not knocked out electricity etc. What a wild night it was last night.

Here is my christmas cheer: had a bone marrow biopsy done two weeks ago (exactly a year on from my transplant, 11th December 2012) and yesterday got the news that all is fine and bone marrow working and no sign of leukaemia!  This is the best christmas present I have ever had (even better than my Hornby train set circa 1962).  Had spent a very anxious two weeks waiting for the result convinced that everything had gone pear shaped. I could have kissed the consultant yesterday. Instead I shed a quiet festive tear;  then drove down to sainsburys to buy some crackers. When I think about this time last year, holed up in that tiny room, tied to a drip (with tinsel tangling off it) and staring out at a brick wall. It is so very special to still be here.  It feels so brilliant to be alive (and walking up the hill). Not been an easy year but I hope 2014 will be healthier all round.  Still another 12 months to go before my immune system in fully recovered and working normally - so more journeying ahead. Fingers crossed it will be easier than 2013.  Haemoglobin recovered and back to normal, steroids being reduced slowly. Platelets had been dropping for some unknown reason, but they too have turned a corner and on the up. Whoopeee.

My saddest holiday news is Luigi has gastric flu and holed up in Italy. So no festive pampering for me. Have not seen him since October. Ouch! that is a long time. Hope he recovers in time to get here for new year.  Celebrations go on nevertheless. Tonight Mel and the boys are coming round for risotto and rummikub. Candles and crackers all over a bright red table. My xmas tree has decided to lean precariously to the right, and I can't move it without risking half the stuff falling off plus a face full of pine needles. So lean it must.  Tomorrow I am joining Lulu and Julian and their extended family for turkey and trimmings plus more crackers. Then home to watch my new hd smart tv - which has an amazing sound system attached to it, courtesy of my brother Adrian. Sounds incredible. A new watching and listening experience!

Ok time to go cook. Hope everyone is well.  A huge thanks to you all for all your amazing support, blog-comments, texts, emails, snail mail, visits, phone calls etc over the year. You have all been a huge support to me which has really helped in my recovery and kept me going, especially through the tough times.  Love and christmas wishes right round the globe: cousins in Australia, nephews in Honk Kong and South Africa and New Zealand, friends in Italy, USA (snowy Cleveland) Letterkenny (big time windy I bet). And all those closer to home, Somerset, Sheffield, Norfolk, Oxford, Hythe, Harlow, Brighton, Whistable, Wales, and all North and South London contingents (the most fantastic bunch of friends).  To strangers too, who I know read this blog. And anyone else I may have missed out. In the words of Tiny Tim, "God bless us, everyone."

See you in the New Year.  tch xxx

     Whooshing into christmas

STILL NOVEMBER

Ciao Tutti!

Over a month since I sat down to write this blog.  Needs some updating. Cant remember too much what has happened during the first part of November. Things were going well. I was down to a visit every two weeks at the HOP clinic. Drove myself to hospital so saved a fortune on taxis.  My blue badge arrived so made parking a whizz.  Visited Tate Modern and parked right outside. What a treat! Regular shopping at Sainsbury's.  Managed to walk up to Horniman Gardens from the house. Great.  Planted daffodils for the spring and chopped back the last of the lavender. Garden all umbers, reds and yellows now; only fushia still flowering.  Has clambered everywhere and looks great, all twisted and tangled and full of red and purple bells (thin variety).  Birds busy on the feeder. Had a parakeet hanging off it the other day too. Local cats suddenly got wind of all my feathered friends and are starting to stroll round the garden too often. I am shooing them away. Am I turning into a mad woman I wonder?

So all was going fine and dandy. Bloods where stabilising and I was starting to feel a whole lot better. My steroids were being reduced, my tremors where getting less. My taste was coming back. My face was  thinning down. Then last week the hospital decided to give me an infusion of immunoglobulins (part of the immune system, immunoglobulins help to identify and neutralise bacteria and viruses). Apparently mine were very low - so it was a precautionary measure as we head into winter. It took two long visits to the HOP Clinic to infuse me with 7 bottles of the stuff.  The day after it had finished I woke at midnight with a screaming headache and high temperature. That went on all night. My brain was falling out. I felt so ill. The following morning I got an ambulance down to A&E at Kings and eventually ended up on a bed back at the HOP clinic. I was told my symptoms were a reaction to the transfusion, given paracetamol and antibiotics to fight off any infection that might be brewing.  A routine blood test also showed my haemoglobin had dropped quite a lot. I queried this with the doctor on duty, but was told it was normal.

Got home, swallowed all the pills. Didn't want to eat anything. Watched my temperature spike. Slept. Friday morning was feeling a bit better, so drove to pick up new glasses from Specsavers…stayed the rest of the day pretty much on the sofa. On Saturday my temperature was still a bit high. I looked yellow. My breathing had deteriorated. Walking up and down the stairs suddenly became very hard work and took ages. Sunday was even worse. Breathing more difficult, even harder climbing the stairs, dizzy and pale.  I read the side effects of the antibiotics I was being given and decided that they were possibly causing the problem. "can effect red blood cells, causing breathlessness, yellowing of eyes and skin, dizziness".  Eventually called Kings to ask if I could stop taking the antibiotics. The registrar wanted me to go into the hospital immediately. Not what I had bargained for. Was very reticent but figured it was better to be safe than sorry. So Mel took me in. A dark windy Sunday evening. What utter misery. Suddenly I was being pushed in a wheel chair down the long corridor of Davidson Ward and into Room 5. The memory of everything - blue uniformed nurses, smell, food, bleeping monitors etc, came flooding back in one big whoosh. This was so not what I ever wanted to experience again.  I held my breath and shut my eyes for the night. Though didn't get much sleep. It was a crazy few hours, full of blood tests, doctors calling into see me at 2am, calcium drips.

In the morning I was told I had a  haemoglobin level of 65 (baseline is 115) and therefore needed a lot of blood fast. Due to the continuing violent headaches it was also decided I needed a brain scan and possibly a lumbar puncture. Oh dear, it was all coming thick and fast.  Wheeled here and there. Shunted through CT scanners, more bloods taken (no hickman line anymore, so everything in and out of me goes via a needle and canular, bloody painful too). chest X-ray. The new blood eventually arrived at 6pm. 3 bags full. I was hooked up all night. The process didn't finish till 6am Tuesday morning. Blimey, was I exhausted!

Haemoglobin level went up to 100. Brain scan was ok. They decided not to do the lumbar puncture (hurrah!) headaches got better. I had colour in my cheeks and could walk again.  In the afternoon I was told by the consultant that I could go home as they had a chronic bed shortage and I was the 'wellest' person on the ward. I was not going to complain. What a relief. Back to Grassmount. I can stare at the winter trees outside of my kitchen window and make a cup of tea. Such simple necessities.

In the end it was thankfully a short sharp visit. But not without consequences.  They have had to up my steroid intake while the red blood cells start to get back into a healthy production line. So back come the tremors, fat face, loss of taste etc.  I am having to go back to HOP clinic everyday for blood work to check haemoglobin doesn't start to drop again. So far it is ok, but hasn't got above 109.  My whites and neutrophils, which had finally been at normal levels last week, have dropped dramatically. I am told this is due to increase in steroids.  Have no idea how much longer I will  have to remain on these wretched pills, but am pretty fed up with the whole situation, especially as I was almost off them (after 6 months).

Not sure in the end what caused all the problem. I think it was a mixture of a rather cavalier doctor decreasing my steroid intake too quickly the week before the infusion. Despite my blood work showing a lowering of haemoglobin reading, this was not picked up, so my haemoglobin count had already started to fall before the infusion of immunoglobulins took place. Plus I had a double whammy of bad reaction to infusion and antibiotics. Everything all happening within 48 hours. The perfect storm.

I have just reread this and its all a bit confusing and long winded.  So congratulations if you have managed to get yourself through it all!  I need to go and make myself an omelette. I look forward to Luigi returning, he has been gone an age, and I have missed him big time over this last week. Its hard doing this alone. Though I have had great support from my family, Mel, Pip, Lulu and Julian. You are all stars. Thanks guys.

Lovely soft low November light shining outside. My neighbours holly bush is full of berries. The Robin is hopping around the empty hosta pot pulling at delicious bugs. The squirrel stole the coconut that I took ages to string and hang...

Hope everyone well. The annual madness is already upon us.  Keep calm. Thanks for messages that still keep coming through. Stay warm, or cool if you are southern hemisphere. Back soon. tch xx

OCTOBER SUNSHINE

Ciao tutti!

Blimey, it's been over three weeks since I last updated this blog. Time is all of a wizz and days are spinning by. Can't believe it is almost November. Clocks go back on Sunday. Today is stunningly blue. There is a three quarters moon sitting clear in the sky. The wild winds have stopped and the trees are taking a much needed breather from all their swaying. Plenty of leaves gone.

Since I last wrote things have been pretty good. I have visited HOP Clinic once a week for blood tests. Results for whites and neutrophils have been slowly improving which has cheered me greatly. Though neither have made it up to normal yet. Haemoglobin and platletes are holding fast and steady, bang in the middle of where they should be. That's very good news. At last they have begun to reduce some of my medication. Steroids first. Once I am off those they will start to reduce the immune suppressents. It's a slow process but hopefully my body will respond favorably. I am mightily tired of swallowing pills night and day. I am also fed up of having a monkey-moon face (fat and hairy).  Looking forward to riding myself of all miserable side effects...

My strength is returning bit by bit. I can now walk up the stairs properly and some days even manage without having to use the banisters. I am still troubled by tremors though - feel a bit like a wibbly jelly constantly shivering on a plate, which is exhausting. Best news is that I have started to drive again! I am thrilled at this development. My world has started to expand. Walking round the roundabout is almost a thing of the past. Took myself down to Dulwich Park the other day. Me and my trusty stick kicking through the autumn leaves (tottering would be a more accurate description). Drive to sainsburys, the GP, even the hospital (which saves a fortune on taxis). Life is beginning to take on the shape of normality. This does a lot of good for my head too.

Last week I went with Luisa and Jan to the 'Multiplied' exhibition in South Kensington. This was my first major trip out for almost a year. Just driving through London streets was a treat. Crossing the Thames. Battersea Power Station. Kings Road. Everywhere alive with people. Everything just as it always was. What a buzz!  It's so easy to forget. I have been so confined to a world of corridors, harsh light, needles, pumps, wheelchairs. Everyone I know dealing with their disease. Sickness, exhaustion, limp bodies. Consultants, doctors, nurses. Appointments, waiting rooms and plastic tea machines. The joy of stepping away from this world and starting to taste life as it used to be, is just so damn good.  I am so happy to be here again.  

Yesterday Pip drove me to the Serpentine to see an exhibition by Adrián Villar Rojas, 'Today we Reboot the Planet'. Worth a visit.  Another wonderful afternoon out too. Perfect weather. We stood on the bridge in Hyde Park and looked across the lake to the vast selection of trees, all splendid in their autumn colours. I was suddenly hit with the notion of what a handsome park it is, right slap bang int the middle of London.  I had a thought of kings and queens of centuries passed riding through burnished autumns, just like this one. Time is a funny old thing. Keeps on ticking. How fragile and fleeting life is. Yet how fantastically solid and reassuring the rhythm of nature.

And almost out of the blue, Luigi turned up a couple of weeks ago! He was here for six days. That was an unexpected treat. He cooked me saffron risotto, roast chicken and spicy sausage pasta (not all at once). I was hoping we could have gone to the Australian exhibition but got knocked sideways with a nasty asthma attack which kept us at home. He got busy in the garden instead. Not much colour left now - a few sad stalks of late lavender and the occasional passion flower. The fuscia is still blooming though. Hosta leaves have turned banana yellow and geraniums have got all damp, brown and floppy. The grass needs to be cut. I have a list of 'things to do'.

Hope everyone good. Sorry it's been such a long time between updates. Thanks as usual for all messages, emails, texts etc. I wish I could hold a big party and invite everyone. Will write again soon, meantime, love and greetings north south east and west. And Australian cousins, hope you are all safe. Back soon. tch xx

MOVING ON UP

Ciao tutti!

Another big gap between blog updates. Days are speeding by. Being brace free is fantastic. Walking around the house, up the stairs and round the roundabout is a breeze. I am still struggling with weak muscle tone and bad shakes (medication) which hampers my mobility somewhat, so use my trekking stick to keep me steady and upright.  Back can ache big time if I do too much especially bending (emptying the washing machine), so often flopping flat on sofa to let the ache pass. Get a weekly visit from the physiotherapist, who gives me a range of exercises to do. Have to admit to not being very self disciplined in regards to these. I am sure my muscle tone would improve quicker if I did exercises everyday! Wrist is slowly improving too, though still quite swollen. Unfortunately the tendon in my thumb has snapped - apparently it can happen after a broken wrist - so I have a floppy left thumb that can't do much. It will require an operation at some point in the future to fix. They will take tendon from my index finger and attach to thumb tendon somehow. All sounds a bit gruesome and squirmish. I will be in another green cast for a further month and then physio to get thumb working again. It never rains  but it pours. I really would like all this medical intervention to stop very soon!  

My Hickman line was taken out a couple of weeks ago. A long and painful procedure as it had been in for over 9 months so was well bedded into my chest. After an hour of prodding, poking and cutting the doctor called for a vascular surgeon. There was talk they might have to send me into theatre. Blimey. However, vascular surgeon knew her stuff. A bit more cutting and some very strong tugging and finally the line succumbed. All out. Bloody and slippery. Alien leaving my chest. 5 stitches. Swollen, bruised and sore. But now, two weeks later, there is just a neat 2 inch vertical line. I am littered with scars from Hickman lines, pic lines and bone marrow biopsies.

My bloody neutrophils are still playing up. Dropping very low last week to 0.77, which makes me neutropenic again, so having to be careful with what I eat. I go into my usual spiral of panic, and hospital respond with their usual 'don't panic, it's fine' routine. I hope they are right. They say the low count may be due to medications. At least my haemoglobin and platelets are normal and holding steady. I have a clinic visit tomorrow and another blood test. So praying to everything and everybody that the counts will have gone up. Any lower and they will probably do a bone marrow test to see what is going on. Not what I want. I don't want anything to be going on. Except for getting better.  Waiting to see specialists for my eyes (which have been playing up for months) and my mouth (have lost all sense of taste). Oh, it's a long, long process this recovery.

Last week, lewisham delivered my 'bath chair'. Brilliant. Now I can have a bath and a hair wash. The bliss of sinking myself into hot water after three months of standing at a sink! Chair goes up and down with a battery operated system. Easy to heave myself out of, so climbing in and out of the bath is now possible. 

I have been managing ok without Luigi. Better than I imagined.  Life has been very social - lots of friends and family have been visiting, which has been great. Lulu took me down to sainsburys, dressed in face mask and clutching trekking stick. Looked very odd and got various sideways glances as I pushed trolley down the aisles. Forgotten half the things that sainsbury's stock, so it was great to fill up with treats and broaden my menu somewhat! Walking daily round the roundabout, managed 5 times the other day. Doing some very light gardening too. Wendy bought me orange violas, so I have a bit more colour to add to the fading shades of summer. Still butterflies and bees visiting.

I am planning, at some point, to get up to the Royal Academy to see the Australia exhibition. I hope it will inspire me. Still not managed to do anything creative. Severely lacking motivation. Every time in go into the garage I see half my studio piled high. It is overwhelming. I guess at some point something will click and I will start to feel hungry to make again. 

Bath time for me! Hope everyone well and enjoying the season of 'mists and mellow fruitfulness'. Thanks as ever for all messages. Great to still be hearing from you. Back soon, meantime love to everyone at all compass points.  tch xx

BRACE IS OFF!

Ciao Tutti,

Got a phone call from Kings this afternoon to say that I can take my brace off...oh what a relief! It feels amazingly light wandering round the house with just a t.shirt on and no metal bars strapped across my chest or thick velcro wrapped round my waist. 9 weeks to heal which is pretty good as they had originally said twelve. Back feels stiff and it is odd bending down - keep imagining my spine will snap in two. But soon I can have a bath and a hair wash - joy. I have already done some gentle dead heading in the garden..Lots of physio now to strengthen up my back and wrist. No more climbing on sofas, chairs or tables and I hope that's the last of my bone problems.

The CT scan of my lungs showed two small patches which the consultants reckon is residue infection, but nothing more sinister. The last week or so has seen a big improvement in my breathing and I am coughing a lot less- don't sound like a foul hacking smoker anymore. 

My steroids have been reduced, which will hopefully reduce the tremors that I have been afflicted with for the past couple of months. However less steroids runs the risk of a low haemoglobin count and reactivating the Haemolytic Anemia, which will mean more blood transfusions. So it's a matter of balancing everything out. Blood test last Friday did show a drop in my haemoglobin, so things having to be monitored carefully. White blood count and neutrophils still low, but moving, at a snails pace, in the right direction. Also they have reduced my immuno suppressant drugs, so hopefully less headaches and nausea.  Fingers crossed my body can handle all the changes. It feels like I am taking some positive steps forward after spending the whole summer treading water.

Last week have been sitting in the garden getting the last of the summer sunshine. I forgot what it feels like to feel warm sun on my skin. How it lifted my spirits. Also managed to do some circuits of the roundabout. Mel and Lisa came for tea on Saturday and we did a mammoth 3 times round! Then on Sunday went up to the Horniman museum and had a slow walk round the gardens. First time I have been up there for almost a year. The place looks like a child's paint box, bursting with dahlias of every colour. The vegetable garden full of  interesting stuff: cranberries, peanuts, enormous waxy yellow corgettes or perhaps they were pumpkins...either way, too heavy to lift off the ground.  Iconic London skyline gleaming under september sun and a backdrop of skidding clouds. It was great to get out of the house and move around another space.

Today Luigi has gone back. Very sad for me. He has been brilliant, as usual. My rock. Will miss him hugely. There is always such a big hole when he leaves. A silent space that is difficult to fill. There used to be Lilly who would take the edge off the loneliness. But now it feels like I am starting over. Oh dear! Feeling sorry for myself. However, got a lot of friends coming round, which I am looking forward to. And I need to start to try and put some kind of structure into my life, organize some simple work things. Was spoilt by Luigi, who did everything, so it will be good to regain some independence and easier to do now that my brace is gone.

Summer shadows disappearing. Autumn creeping up. That dank smell in the air.  Foggy mornings. Rain arriving. Evenings gathering in quickly. Blimey, how time flies...

Hope everyone is well. Thanks for all messages, love to get them and hear how you all are. Also thanks for messages from 'unknown' friends who follow the blog. I guess it's 'back to school' for lots of people, or at least a version of that. So hope summer was a memorable one. Maybe we still got sun to have. I predict a glowing late September and warm October. That will be good. Greetings to both hemispheres. Whether your upside down or right way up, sending lots of love. Back soon. tch xxx

MY BLUE HIBISCUS...

...is in full bloom and looks great. So too agapanthus. Bees in seventh heaven! Just realised its been over two weeks since I updated blog. Sorry to those who check regularly. Recovery slow, but moving on. Still very shaky on my feet, so not managing to walk much: pad around the house, up and down the stairs and occasionally I do a length or two of the garden (which is small!). But basically I move from bed (upstairs) to chair (downstairs). Brace is heavy and uncomfortable, so can't sit for too long without back aching. I have an X-ray booked for 4th September to see how the healing process is going. I am hoping they may say brace can come off, though likely to have to wear it for another six weeks or so. I have managed to sort myself out some 'community physio' - so as of next week will get a physio visiting at home with a gentle exercise routine. Green wrist cast is off, replaced by a lighter skin coloured splint. Wrist still swollen and looks odd. X-ray next week to see how well it has healed. That's my bones update.

Down to weekly visits to HOP clinic. Hurrah! Last bloods all good. Haemoglobin now back to normal level. Neutrophils and white blood cell count dive bombed a couple of weeks ago, but have since recovered, albeit slowly. Least going in the right direction. Go in for blood test tomorrow, so hoping that results will be good. The constant up and down of results is psychologically exhausting. Roller coaster riding.  My lungs still causing problems - get very breathless at times, which limits my physical activity (unable to walk round the roundabout). Consultants seem to think I may have GVHD of the lung and are treating me as such. I still have a mountain of daily medications to take. Nausea rules. Often wake up feeling lousy, full of ache and general discomfort; other days feel much brighter. Get tired easily, often have long afternoon catnap. Appetite still poor, lost lots of weight and muscle tone. Jeans hang off my skinny legs and my bum has all but disappeared.

My studio no longer exists due to a fire that happened way back in February. The studio above mine caught fire (dodgy Christmas tree lights) and was completely burnt out. Luckily my studio wasn't fire damaged, but was badly water damaged. Lost a few pieces of work, but most materials and print equipment ok.  Ceiling caved in and covered everything in filthy dust, grime and muck. So my beautiful studio - already for me to restart with a creative recovery programme - has been pulled apart and packed away. The landlord will get it fixed up eventually but will probably sell all the units on as one big live/work space...way beyond my budget. Half the equipment and work is stored in my garage while the rest will go into a storage unit in forest hill next week. It is heartbreaking. I had worked so hard to get the studio set up. It was already to run small scale workshops, with bespoke workbenches, etching press, kitchen area, badge making area, a mezzanine floor housing a tiny print 'library', computer and printer, and a great music system (drowned by firemans hose). Now it's all in bits and pieces and packed away in different parts of forest hill.  I can't see it ever being restored. In fact I sometimes wonder if I will ever print make again. I don't feel an ounce of creative juice coursing through my veins. The very thought makes me exhausted! But perhaps I may start with some small scale lino cuts which I can hand print on the kitchen table. Back to basics...nothing wrong with basics.

That's my blog update for now. Have seen lots of friends over the past couple of weeks, which has been great, even though I have been sat like a trussed up chicken in my granny chair and probably not the most aimiable of hosts! Special thanks to Lu for cutting my toenails (can't reach them), sorry I squeaked so! Big hallo to everyone out there and thanks as ever for all messages which contine to fly in via text, email, blog and real live snail mail. Love hearing from you all. Keeps the days rolling by. Little by little and bit by bit. Off now to give myself stomach injection. Back soon. Ciao tutti. tch. XX

STILL AT HOME!

Two weeks now since I was discharged from Derek Mitchell Unit. Fantastic to be at home for such an extended period of time! I have only had three visits to the HOP clinic, which makes a difference to the three or four a week I was having to make back in May. That was exhausting. It seems at last that both the Red Cell Apalasya and the Auto Immune Haemolytic Anemia are under control. My haemoglobin count is holding and remaining steady - I have not had a transfusion now for about 5 weeks. That's the good news. Yesterday I was in HOP for a routine blood test and unfortunately my neutrophils and white cell blood counts are still falling, to the extent that I am now neutropenic again (goodbye salad and summer fruits). Not sure why they are dropping. I hope it is not a sign of anything sinister. I am still struggling with my cough and a bit of a cold, so hopefully this is the reason for the low neutrophil count. I go back to HOP this Friday for another blood test...

As for broken bones and back braces, well, I have mastered the art of getting the brace on and off quite quickly. With the aid of a 'grabber', sent to me by my sister, I can manage to put on jeans and underwear. - quite a feat - but putting anything over my head is virtually impossible, so have to do that with Luigi's help. I can walk slowly, although I still have pretty wobbly legs. I managed to get once round the roundabout on Sunday. It must have been quite a comic sight, tied up in my brace with me clutching onto Luigi's arm and moving at a snails pace. Bloody hard work though and the uphill bit (only a few yards) was really tough. Lots of puffing and panting. The stairs are a good work out for my leg and arm muscles. Thank goodness for the banisters. The cast hopefully comes off my wrist in two weeks, so having my left arm back in action should make things a bit easier. I have a special 'high backed recovery chair' to sit in which helps to keep my posture straight and gives my head support. I stare at the garden and the tv. The bees and butterflies are in abundance. The sun makes the yellow potentilla gleam. The evening light makes the geraniums almost fluorescent. The rain beats down too and cleans the dust off the passion flower leaves. Two baby wood-mice (must be off-spring from the original wood-mouse) scamper at incredible speed through the grass and round the flower pots. They sit at the bottom of the bird feeder feasting themselves on fallen grain.

Friends come by. Last week Amanda gave me another soothing reflexology. The effect knocked me for six, but helped clear my swollen ankles. Wendy spent a solid three hours in the garden, cutting, pruning, weeding and tying back. She did a brilliant job. Mel and Charlie moved loads of studio stuff from Havelock Walk up to my garage (I no longer have my Havelock Walk studio - a very sad state of affairs, more of which on next blog entry). Martyn came for supper. It has been great to have all this contact and start to get some kind of normal rhythm going again. But this week I will see no-one as I want to keep infection-free as possible.

Wish I could climb into my car and drive myself to the sea. I long to feel salt air on my face and listen to the breaking waves. To sit with my eyes closed, face turned to the sun and toes digging into damp sand. To watch kites dance and dive under a summer-blue sky. It's been two years since our camping holiday at East Prawle, pitched in a clover field full of rabbits. I am sure some Devon sea-air would do me the world of good. This time next year I intend to be packing the car with tent and cooking gear and heading south.

Thanks to all for messages, in whatever form they come. Brilliant as usual to hear from you (Tony P, I love your menus). And thanks too to all of you who still follow this blog regularly. I am amazed that so many people still keep up with my progress.  It's not been the easiest of journeys, but your support and encouragement has made it a whole lot easier. Fingers crossed now for neutrophils to go up...

Hope everyone well and relaxed as summer continues to shine. Back soon, tch xx

BUTTERFLIES AND BEES

Home! Got back on Tuesday evening. The house now resembles an old people's home, full of aids and raised furniture, but at least I can get about the place. My blood had gone tumbling down while I was in hospital, but went into HOP today and pleased to say that results have reversed and things now starting to slowly go up, which is a great relief. Now I got to work on my appetite and weight. Oh, and get out on that roundabout as soon as possible.

I am sitting on the sofa, trussed up like a chicken, staring out at the garden. A pair of greenfinches have taken up residence on the bird feeder. Bees are hanging out on the lavender, making the long stalks bend and bounce as they move from purple head to purple head. Lots of butterflies too, white, blue and tortoise shell. What a feast it all is to see after weeks of brick walls! Just great to be home. This time I intend to stay here for a long long time and no more climbing on sofas, or climbing on anything, come to that!

The sunshine is great. Last night I lay in bed and listened to the beating rain. I long to hear some thunder and see some bright white lightening...

That's all for now. Thanks for all your supportive messages. Will be back soon; meantime hope summer is good for everyone (winter for you antipodeans). Those packing suitcases and heading of for holidays, have a great time. High fives north south east and west. tch xx

BELT AND BRACES

I thought things where challenging enough! A broken back in the mix adds another level of nightmare to everything. I had to lay completely flat for two days (being spoon fed), while damage was assessed: compressed fracture of lumbar one. Finally the neurological surgeons gave the all clear that the fracture was 'stable' which allows me to wear a brace and start to slowly move round. I have spent the last week learning to put brace on and off - a huge contraption that velcrows round my waist, has a supportive spinal back and two large metal circles that support my chest. Imagine a Star Wars outfit ( Darth Vadar's soldiers)  - something akin to that. It's heavy and cumbersome, but I can walk with it on and have also managed to get up and down stairs. It will be very challenging getting in and out of taxi for my frequent visits to the HOP Clinic... They reckon I will have to wear it for three to four months...

It impacts on everything: going to the loo, getting dressed, bathing - no bath for as long as I have to wear it...loosing mobility is the worse thing, unable to reach for stuff, everything taking ages to do. In hospital I am in bed a lot of the time, but need to keep as active as possible to insure my muscles keep working - and they were already weak, so now doubly difficult! Oh what a mess! My wrist is a compressed fracture which will take about six weeks to heal. They have cast is in some green fiberglass material that looks like something you would get in a garden centre....of course, having very little use of left wrist makes things twice as hard, especially getting the brace on and off.

Blood wise, things look like they might be starting to improve, as haemoglobin is holding and I haven't needed a transfusion for two weeks, which is a great relief. However, don't want to count my chickens just yet, it is so easy for everything to turn in the blink of an eye. If I hadn't stood on the sofa to water a plant, I would be home enjoying sunshine, garden and Luigi...instead I am on RD Lawrence ward, a ground floor outpost of the haematological wards, sharing a room with an old Nigerian lady. She has a large extended family who visit daily. There is no tv, and only an intermittent radio and internet signal...more brick walls to look at, but also a spiral aluminum staircase outside of my window. I imagine it full of pots of red geraniums. Also the windows open a tad soI can hear planes flying overhead, unknown voices, road drills, kitchen clatter and at night I get a coolish breeze. God it has been so hot.

That's enough for now, I am tired. Just had my blood results and my neutrophils have dropped almost to the point of being neutropenic. Just what I need, they have been so good recently...enough enough. I want o bury my head in the sand, but have to keep looking straight ahead. Forwards on this long and winding road..

Ciao to everyone, thanks for messages, lovely to hear from you all and so much needed right now. Back soon. tch xx

BROKEN BONES

Yesterday climbed onto the sofa to water plant. Lost my balance and crashed onto wooden floor, ambulance, 10 hours in a and e, result, one broken wrist and a cracked vertebrae.  Now lying flat on spinal bed. Don't know for how long, staring at ceiling. Very very unhappy, will try be back soon Tch x

MY WILD GARDEN

Quick update...got let home yesterday afternoon! Fantastic. Had a two units of blood on Wednesday and the haemoglobin count is holding, or at least dropping slower than before. By pure chance, coinciding with my departure from room 14 was the arrival of my man! So had someone to take me home, which was great as I am very weak and shaky. Have spent the day on the sofa and slowly padding about the house. My garden is wild, long and overflowing. Needs some serious trimming back. But don't really care, it is full of colour,and lovely to look at.  Lots of things still coming out: roses, lavender, hibiscus, geraniums, potentilla, fuscia and more. The sun has been shining all day. Woke up to the sound of a blackbird singing. I can see blue sky and clouds. Watched Wimbledon and now waiting for tomorrow's big match. I wonder if Murray can pull it off this year...I hope so, despite the fact that getting a smile from him is like getting blood out of a stone!

I am back to the HOP Clinic on Monday for a blood test, chances are I will need another transfusion, but I hope this time my transfusions can be managed in the HOP, allowing me time at home. Fingers crossed. Will update again soon, but just wanted to say, for the time being, all is right with the world ( well almost, still big crackly cough and red cell problems will take weeks rather than days to sort). Summer shadows falling across my sitting room floor, doors flung open and a breeze tickling round my bare feet. High fives. Back soon. tch xx

ONE MONTH AND COUNTING

Ciao Tutti,

Sorry to report I am still marooned in room 14 on the Derek Mitchell Unit. It's been over a month that I've been here now, bar the few hours I had at home, mid June, to view my garden...My chest infection has improved and I am no longer having to be strapped to nebulizers, though I still have a pretty foul cough. The main problem is still with my red blood cells, which have yet to show signs of improvement, despite four weeks of rituximab infusions. I have two issues with my red blood cells - the first being the Auto Immune Haemolytic Anemia, whereby my immune system thinks the red cells are foreigners and eats them up. The second is Pure Red Cell Aplaysia - this is a condition that means the bone marrow is unable to make red blood cells. So it's a double whammy. And very anxious making. My haemoglobin count drops frequently which means I have to have lots of transfusions. Trouble is, I have had so many of these that it is getting harder and harder to find me matching blood, as my blood is full of antibodies. I often have to wait for over 24 hours to get a match. This is scary. On bad days I lie here and wonder what will happen if they can't find a match... Last week I had a bad reaction to a transfusion. Horrible experience! Freezing cold, violent rigors (shakes), fever of 39, throwing up, high blood pressure. My room swarmed with doctors and nurses for an hour while they administered counter measures. Rigors eventually died down and temperature was reduced. I was wheeled down in my bed at midnight to the A&E X-ray department for a chest X-ray to check there was no fluid on my lungs - apparently it can happen as a result of a bad transfusion reaction. Luckily all clear!  I have had three more transfusions since that experience, they pump me full of hydrocortisone and steroids as a precaution prior to receiving blood. So far it has worked. 

It has been quite a tough and eventful few weeks. I have been saved by visits from friends and family, which have kept me going through these long days. So too has Wimbledon - don't think I have ever seen so much!  I count bricks on the wall outside my window. And when the sun shines I can see sharp shadows fall across them (but no sky unless I press my nose to the window and cast my eyes upwards). Still waiting for a visit from the other side of the Alps... that would do my spirit good. 

Once my bloods have stabilised I will be sent home, though managing alone is going to be a bit of a challenge! June has come and gone and sadly I have missed the best month for my garden. I hope I will see at least some of July from the comfort of my sofa. My stamina, which I had spent weeks building up at home (all those stairs and roundabout walking) has all but disappeared. My legs are stick pins. I have a physio take me out in a wheel chair everyday and I manage to walk up and down the hospital corridor reasonably easily. Got to keep those muscles working!  But stairs, as before, are proving exhausting work, back to one  step at a time. Up a bloody mountain!  I long to be at home and getting in my car and life just to be sweet and normal again. It will come. Just requires patience. 

Thanks to all of you who have visited and kept in contact via email text and blog. It is great to have your support and means a lot. I think I need a 'collective positive thought time' in order to get my red blood cells to start working properly - or some kind of 'blood dance' to be performed. Prayers, whatever. I need to move on from this phase. I hope everyone reading this is well and having a good summer... Love round the globe. Back soon. tch xx

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

BACK INSIDE

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...

HAPPY EASTER

Dear All,

Just heard on the news that its the coldest easter day since records began.  All I know is I just had to turn the central heating up...and it tried to snow again yesterday.  Our birds are being well fed with seed. They are busy visitors at the moment; the Robins are starting to nest build and fly in to grab pieces of moss and tiny twiglets. 

It has been a weird week.  I am still completely shattered and finding it hard to get out of bed. I have no energy at all and tend to do a lot of flopping about when I have managed to get up and dressed. I sleep a lot too.  Its horrible. I hate being so lacking in umphh.  Yet I feel happiest when I am under the duvet at whatever time of day.  I guess part of this is what the nurses tell me is chronic fatigue syndrome and the other bit is some kind of depression which has settled around me.  I am not, at least, feeling so out of sorts as I did when I last wrote. Slowly slowly starting to re-engage with the house and my old rhythm.  But I am frustrated at the time everything is taking.  Luigi is still having to help me climb up and down the stairs.  My legs are so weak and stairs are a real challenge.  Still struggling too with this bladder infection, which wakes me on the hour every hour during the night. Another good reason I guess for feeling so tired and wiped out. A decent nights sleep would do me the world of good.

Three out of five days last week I spent at the HOP clinic having blood tests and receiving various intravenous liquids.  Doctors are pleased so far with how the transplant is going. I think my system now shows 100% donor blood cells - something known as chimerism. Anyway, its good.  Visits to the clinic are always exhausting. Mainly a lot of just hanging around waiting, either for tests to be done or results to be had or doctors to see.  Last thursday I got in at 9.30 and got home at 4.30... its almost like a full working day.

Hope everyone is well and having a good holiday weekend.  Messages are still tumbling in which is so great. It is lovely to hear from so many people. I am amazed that you all still check in!  Your support is much appreciated as I am sure you all know.  Sorry for dull blog, but it has been hard work just writing this, both physically and mentally - my my, I gotta stop moaning.  I am still OUT which is the best thing. I dread the thought of having to go back in.  God forbid. Catch you all soon, big  hug around the globe.  tch xx

HOME

Dear all,

Unbelievably came home on Friday afternoon! It all feels very weird after six weeks in hospital. I think it's called institutionilasation. Should feel extatic to be here looking out into my garden, but feel strangely cut off from it all. Also incredibly tired and too full of drugs. They have put me on an anti depressant which will take a few weeks to kick in. Will write more when i am feeling more normal. This blog just to touch base and say that I am back at Grassmount. The garden is full of birds. Back soon tch xxx

NEWS FROM ROOM 10

Dear all,
Sorry such another big gap between blog updates. Been too tired and too wiped out to get it together enough to tip tap on my ipad. This afternoon there is some strange force from somewhere which I am taking advantage of...

My catheter was taken out at 4am yesterday morning. I wish I could report that everything is better and the pain has all cleared up, but alas not able too. Still Ina lot of pain and still needing to pee outrageously frequently. The doctors say it will settle down eventually. Blimey, eventually isn't soon enough for me! They are also giving me heaps of medications and some anti depressant type thing, which is supposed to make me more jolly, increase my appetite and calm me down. It works to a point but I just feel so drugged up all the time and constantly falling asleep. I have got very agitated and anxious recently, which has given me further layer of problems to cope with. My coping strategies are wearing thin. Lost a lot of weight too and my mobility is very weak. Oh dear, busy days at Havelock Walk seem a long way away. I guess eventually they will return...along with everything else.

Thanks for all your messages, in what ever form they arrive. They have kept me afloat through these dark and difficult days. I really hope soon I will be blogging that I am on my way home. In the meantime it's on with the drain pipe view and my bleeping machines and dreadful hospital food...much love to everyone, everywhere, tch xxxx

Ps even lost touch with the football so have no idea if Utd are still top or what....

LIVING AT KINGS

Unremitting. Extremely painful. Days meld into one another. Never imagined being ill would be such a nightmare. One day at a time. May get Botox injection for my bladder. Will know tomorrow. Sorry not to be brighter, but this is really taking its toll. Much love to everyone everywhere. tch xx

I DREAM OF WATER MELON

Still stumbling around the minefield, with no obvious end in sight. I have finally finished two week dose of Foscarnate, the drug I needed to control the CMV reactivation. But it is a really nasty drug with bad side effects. For me it has been my bladder with relentless pain and spasm. I have also had a reactivation of a Bladder virus called BK. The focus is now on my bladder to try and get that back to some level of normal functioning. Yesterday I had another 'endnethscopy' (total wrong word, but never the less, an oscopy) that involved cameras, biopsy scrapings, bladder function testing. Luckily it was all done under a general anaesthetic. Also had a new catheter put in.

I have never experienced such pain as with a bladder spasm. Has me yelling out frequently despite being pain killered up to the eye balls. Seriously had enough already. But I have to get through to next monday to see if there is any improvement. If not I may be given Botox direct into my bladder. This will apparently freeze the muscle and stop the spasming. I know, there are plenty of jokes in there somewhere...

Sorry, very much focused on my pain and misery. Thanks to so many of you, near and far for your constant and continued support. All your emails and blog comments have kept me going. Marina so brilliant to hear from you all, da bella Venezia. Tornerò presto. Lots of virtual hugs being sent and recieved right round the globe. Meantime, one day at a time, sweet Jesus.... Back soon tch xxx

Ps my mouth is so dry I have constant fantasy of burying my face into ice cold sweet water melon. I think about the fruit that luigi and I ate out in Venezia, all sweet, juicy and cold: dark red cherries, peaches and hunks of water melon. My taste buds currently totally corrupted. "Even water don't taste like what it oughta"

Hard times

Sorry no blog for a while. Have been having extremely difficult time. A mountain of things going wrong. I can't keep up with it all. The drug I had to control the CMV turned out to be foul and caused many problems. The main one being affecting my bladder. I have a catheter and violent bladder spasms. I need elektrolites daily. Hours worth of drips to replace stuff I am loosing. Today I have 'deranged' vit k levels, which means I am at risk of bleeding. Nightmare. The whole thing is a bloody nightmare. I need some core strength. I feel right now that i will never get out of here. Everyday there is something new to add to the list. I needs vibes and prayers and good wholesome things. Miss the outside. But often feel too bloody to not care that much. Back whenever I can get the energy. Bloggers all, salute... tch xx

UPDATE

Bone marrow seems ok. Pewee. I still not though. Lots going on and going wrong. Will write more soon. Thanks for lovely lot of supportive messages. Big help. In the middle of the minefield. . tch xx

STILL ON THE INSIDE

Dear all,

Very quick update as I am, feeling pretty wretched:
Counts all still very low- severely neutropenic now. Back on daily stomach injections to try and encourage counts to build up. Gives me a lot of pain in my back and hips. Feels like I am being squeezes by a python. Keeps me awake at night despite pain killers and hot water bottle.
Am on a new drug for the CMV. It makes me sick. Just been confirmed that I have to remain on it for two weeks. I am being fed anti sick drugs, but tired of seeing cardboard sick bowls!
Back on the deryk mitchell unit, which is where i started off in december. Room has no view. No slice of sky. Just dirty drain pipes and London brick.
Bone marrow result later on this week. Lots hangs on this. My counts are either dropping due to the antiviral drugs or because the bone marrow isn't working correctly. I am freaked out by this possibility. Need all thoughts, prayers etc etc
Back soon. Greetings and love to everyone world wide xxx tch

RECALL

Dear All,

Sadly got a call from the hospital this morning telling me that my CMV markers have failed to respond to the antiviral tablets I have been on for the past week. My blood tests on Tuesday showed that the marker is still high, so I am having to be readmitted tomorrow (bed permitting) for a two week course of intravenous antiviral drugs.  Oh Lordy! Another blank window to stare out of - unless of course I get a slice of sky.  This, as you can imagine, is disappointing news. But I guess in  the long run is the best course of action to take. Also the tablets have affected my blood counts and my neutrophils and WBC are  both very low again.  Medical team do not want this to happen. So all in all...

I am also suffering again from daily battle with nausea and it would be good to see if they can sort this as I am exhausted with feeling sick all the time and battling with a tender stomach. I know this is to do  all the medication I am on (was put on more on Tuesday too, for a returning bladder infection). My current daily swallow is 17 tablets... way too many.  Food and drink have become really hard work - there is nothing I feel like eating and my fluid intake is way too low.  No temperatures though. 4pm and I have just managed twice round the roundabout (hanging onto Luigi's steady arm).  Lovely soft pink candlyfloss sky.

Once back inside Kings I am going to try not to revert to 24 hours bed rest (a lazy habit of mine). The problem is that if I get up and dressed there is no-where to go apart from up and down a corridor with a mask tied round my face.  I will have to think of something clever to do.  I have been knitting bunting for my studio - which sounds bizarre - but has kept me occupied for the last couple of weeks. Click click clack. k1 p1 drop one, swear!  Soon I will have yards/ metres of red triangles to string up.

The bone marrow was short swift and pretty damn painful. I did a lot of 'OOOOOwwwching' as they injected the bone and hissed blue air. But it was over quickly.  Apart from a bruised hip I am not much worse for wear. Though where they are going to find bone to apple cork out soon is a mystery to me. I still have to have regular bone marrow biopsies for the next few years...

Final word is that a pair of nuthatches and a dunnock arrived on the bird feeder this afternoon. So pleased. Word is getting round.  Also a long tailed tit is hanging around in the trees. Now we have a robins, jays, great tits, blue tits, nut hatches, dunnock and a pair of blackbirds. Plus the two squirrels (hand fed by Luigi) and the wood mouse. Quite a gathering. I will think of them all while tied to my drip.

Next stop Kings. Will update from a room-with-a-view.  As always great to hear from so many people -  and all those "unknowns" who have so kindly written, thank you. The world is a very good place! Greetings to everyone. North and South. Back soon tch xx

OUT OF THE BLUE

Dear All,

An unexpected visit on Friday afternoon: one of the Dr's came into my room and informed me that I could go home! Thrilled and surprised all rolled into one. But the thing that made my heart leap most of all was my counts, which had taken a sudden turn for the better all on their own - well maybe due to a change in antibiotics - or possibly even a reflexology treatment given to me by Amanda two days earlier... Whatever, the babies have got their act together and building neutrophils and white blood cells. Over the past week they were continually falling (along with my mood) till neutrophils had reached 0.60 and I had the possibility of having to have further stomach injections of GCSF (bad bone side effects).  I was panicking that my bone marrow cupboard was bare and that nothing was regenerating. Its so easy to get into a spiral of anxiety.  Anyway, it all turned right in the end. The white paper given to me by Dr Robin showed counts standing up and being counted. Mel came and collected us from Kings at 8pm. A ride home in my car. Whoopee! My very own car. Seems an age since I was sitting in it. Miss driving so much.

Been back at Grassmount for almost 2 days now (sorry for extended delay in blog publication!). Very tired. No appetite. But sleeping better than in the hospital. Still hours worth of medications to sort out and take everyday. Nausea a bit more under control. Lost some lbs, which is a good thing. Hair growing back in strange patches. So I look very chemo head still. Some areas full of hair, others virtually bald still. They say that after TBI hair often grows back thinner. Seems that may be happening  to me.  Got dressed this afternoon and managed to walk once round the roundabout hanging onto Luigi's arm. Lots of bird song. A saxaphone playing out of a window somewhere.  Flat grey February sky.  It was good to stretch my legs. Stiff with lack of exercise. My neighbour appeared with a Welcome Home bottle of wine, which was very much appreciated!

Tuesday I have a bone marrow biopsy to look forward too...My back is littered with apple-corer scars. My hip bone must look like a sieve. Hope there is still bone left to core... All my clinic appointments, kick into gear again, blood tests, urine samples, nebulisers  etc etc. I hope this time round I can stay well for a bit longer. In fact a lot longer would be good. Problem is the reactivation of viruses - which normally my immune system would bat away without a second glance, but this new one is going to take time to get itself into adult defence mode - so I am always facing the possibility of succumbing to something relatively innocuous.  Nor do I need to get noro virus or any type of flu. Lots of dodging and diving.

I am a great aunt for the Fourth Time. Kenzo Clode born on February 1st in Hong Kong. A dragon baby. I hope he roars and roars. Well done Jack and Aska!

Greetings all, round and round. Too tired to write anymore. Except thanks for all your loyal and continued support. Gives me huge strength and really helps when times get emotionally tough. Ian, Sound and Vision was the exact song I had in mind when referencing all those blues! Great minds etc and thanks for the Donegal lullabies.

Back soon. tch xx  ps. hoping for a liverpool win this afternoon, then Utd sitting comfortably on top.

COCKROACH IN MY BATHROOM...

....that's what I discovered at 4am yesterday morning. Great big fat black thing, about an inch long with waving antenna. Ooo, how it scuttled. So fast. Me too. Managed to stay cool and not squeal. Rang for a nurse. Somebody came and did battle with it. I was standing on the bed by this time directing proceeding from on high. It shot about all over the place, but finally succumbed and was squashed up and swept away in bundles of paper towel... Pest control appeared first thing in the morning and put a box of bait/poison down next to the loo. However the seed is sown, and every time I open the bathroom door I am doing a scan for scuttling beasties. And joking aside, cockroaches are a health hazard which I could do without. I am surprised that they are here on such a 'high risk' ward. I guess the truth is the hospital is probably crawling with them. Where there one there's sure to be more than two...

Been a difficult few days. Was hoping to be home this evening. But my temperature is slowly creeping up. My blood counts are swiftly falling down (neutrophils still around 0.9) and I just feeling rough, sweaty and unwell. My eyes ache. Dr informs me tonight that the CMV marker in my blood has risen, so they are going to start me on the strong antiviral drug. Not what i wanted to hear. Oh dear. Least it's in tablet form and not IV. If it's IV I am stuck in the hospital till the course is finished. But with tablets I can get home. I will be monitored over the next few days and then they will make a decision depending on how I respond. Can't believe I have been back in hospital for almost a week. Grassmount seems an age away. Robins. Wood mouse. Jays an' all. Luigi tells me there a purple crocus in Ruskin Park. And last night there were great rains and wild winds apparently. Shut away in my isolation chamber i miss out on all this. But my slice of hexagon sky was filled with a smudgy white moon slipping in and out of sweeping midnight clouds. That was a precious sight.

Signing off for now. Waiting for my antiviral drugs to arrive. Lying on my Air Force blue duvet dressed in stardust blue pajamas. Lots of blue. My hair by the way (incase anyone is wondering), is doing a very good interpretation of a skunk (sight, not smell). Growing back slowly in patches of dark grey and white. Goddam it, white!

Hope everyone well. Hope everyone happy. Big world hug. Back soon. tch xx

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

23.1.58

TOday my birthday. This evening readmitted to hosptial with temperature. Got skin GVHD - rash over 70% of my body. feeling a bit lousy.  No bed available so having to go to an "Open Ward" hope I dont pick up germs.  Last few days been tricky, and I have been tired hence no blog. Will catch up soon
thanks for birthday cards and texts. lovely to hear from everyone.  back soon tch xx (aged 55)

UP UP AND AWAY

Another quick update...neutrophil counts gone back up today, now reading at 3.45 and whites at 4.65, haemoglobin and platelets holding steady. Phwee. What a relief. I am one happy person tonight! I guess this may be the pattern for a little while yet, up and down (and round and round).  I shift from being anxious to philosophical. So many see-saws to balance - emotional and physical. Marjory Daw never had such a time as this I am sure - and as for Johnny, he'd be a rich man by now as he's working over-time...

My nebuliser was disgusting. Horrible stuff that tasted foul. I have to have it once a month for the next six months.  I am put into a small room and shut inside with a "giving-machine" strapped to my mouth. It bubbles and smokes as I breath in and hold for 2 seconds before breathing out. This process lasts for half and hour.  A bitter taste that sinks down into my throat.  I long to pull it out of my mouth and breath properly. Instead I just imagine I am enjoying an opium-pipe. I did many many years ago while I was trekking in the hills of Thai Burmese border. I stayed with a family of Karen tribes people for a couple of nights. One of the village elders gave me a pipe to smoke. I remember writing in my diary, "tonight I touched the moon"... Well, this afternoon I was no-where near the moon. Feet unfortunately firmly planted on the blue linoleum floor. The stuff is so toxic that even the nurses are not allowed into the room while I am inhaling it. When it is over, I come out with a mask strapped to my face so that I don't breath over the other patients in the HOP clinic. My chest is tight and I am inhaling fast. I have to have two sets of obs. before they will let me go. Luigi and I finally get a taxi and home in time for tea (crumpets).  4 hours of clinic. Not so bad today. Normally its a five or six hour stint.

Now I am waiting for snow. I love waiting for snow. I love even more watching big fat flakes spin out of the steel grey sky and silently carpet everywhere in white. Always fills me with a sense of child-like wonder.  My sister Jackie sent me a bird feeder for my birthday. Perfect timing. Tomorrow we will fit it up and fill it with delicious nuts and fat-balls. I will have to write a sign: Squirrels Keep Off.

Keep warm everyone. No slipping on ice. Back soon. tch x

NOSE DIVING

Dear All,

very quick update as I am shattered. Disappointing blood results yesterday. My white cells and neutrophils have gone through the floor - from 4.66 and 3.86 respectively (on Saturday) to 1.66 and 0.91 yesterday (Tuesday). Haemoglobin and platelets seem to be holding their own though.  I was expecting a fall, as I have not been having G-CSF injections for three days, but was a bit thrown (ha!) by the such a huge drop.  I had another G-CSF injection yesterday - so we will see tomorrow, when I go back to HOP, if things have stabilised.  I do hope so. I get very panicky when my neutrophil count drops. I need those babies to be self sufficient.

Will also be strapped to a nebulizer machine tomorrow for half an hour.  Stem cell transplant patients  are at risk of some nasty lung infection called PCP so in order to minimise the risk I will have to have monthly nebulizer sessions.  Tastes horrid apparently. Oh dear.

I still struggling with my daily intact of tablets and medications. Some days worse than others. Today bad.  I have had to order a weekly pill box to keep account of all the stuff I have to be taking.  Its easy  to get confused - forget or double-up. I have been in bed most of the day resting up from an exhausting  day at the HOP yesterday - lots of slow walking up and down miles of hospital corridor. 10 vials of blood, weight, height, urine. Low on magnesium - so more tablets to take. Like chewing chalky dusty cardboard. Almost the straw that breaks the camels back. I have to break them up in order to get them down. 2 become 8.

Fingers crossed that tomorrow counts have climbed back up a bit.  One day at a time.

back soon. tch xx