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