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