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