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