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