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