WHEELS DISINGAGING

Dear everyone,

Up until yesterday I was on a countdown for my admission to Kings - 7 days left and riding a daily roller-coaster of emotions. Nervous and waking early every morning knowing that another day was chalked off - but also really wanting to get in and get on with it. I have found the long wait stressful and exhausting - so in a weird kind of way I need to get started.  However at my first Kings clinic appointment yesterday it became apparent, through conversation with the consultant, that some major administrative fuck-up has occurred  (apologies to those readers who would use a more polite turn of phrase) - with the result that the transplant has no clear start date - but will "probably be sometime in early december".  Needless to say I was furious. Fortunately my brother Richard had come along to the appointment as consent forms were due to be signed, so he was there too to add his penny worth of incredulity (is that grammatically correct I wonder?).

I will cut a long story short: before stem cells can be sent over from USA - funding has to be applied for and approved.  This, as you can imagine, takes time - funding approval requires two weeks. Once funding approval is received then stem cell identification and safe passage can get underway.  This requires a further two weeks.  Only when cells have arrived and are in storage at Kings will they start the conditioning (ie start of chemo and radiotherapy).  At yesterdays meeting it turned out that the letter for approval was only sent out last Monday. Its easy to do the maths...  I am left wondering why it took so long to apply for funding, when they confirmed in September that I was to have a double cord stem cell transplant. Also seems the consultant had no idea I had been sent a letter on October 18th confirming that the treatment would start on 14th November.

How bloody inept.  Lack of communication, no joined up writing, hopeless bureaucracy. My confidence in Kings has dropped through the floor.  I told them this yesterday in a fury of tears "this is my life you are dealing with here - and so far you are fucking it up - are you going to treat me in the same way when I am up on the ward? How do I know you will give me the right dose of chemo? the appropriate medications?"  There was silence in the consultation room. Of course I am told that the medical care I will receive will be excellent. And they apologise profusely for their incompetence and my case will be taken forward as "an incident". Sure, that makes me feel a whole lot better.  Ha!  My head spins. I am still in remission, and hopefully will still be in December but nevertheless there is a small risk that relapse could happen before then. In which case I could not have the transplant.  Chaos. This also impacts on family and friends who are first hand supporting me through this. And Luigi arrived back from Italy last week too, ready for the off. Now we are all on "hold".

So I came home, crawled under my New York rug, ate a fat chocolate eclair and drank a big red mug of tea.  Over the past few weeks I had managed to get myself psyched up and reasonably emotionally prepared (not an easy feat) and to suddenly be told that it is not happening has really unsettled me. It feels a bit like an emergency stop in a car - wham, jerk, freeze. Thank god I always wear seat-belts.  There is a strange kind of cruelty in the whole thing. To be so close to something I was not looking forward to, and now to have it put back only means putting off the inevitable even longer. Not good for my head.

However, clouds have silver linings.  At least I have a bit more breathing space and can now do a whole list of things that were going to be impossible to achieve: See Skyfall. Visit Royal Academy for the Bronze exhibition.  Go to Camber for a windy walk over the dunes. Watch the kites flying. See more of you all.  Make more Periodic Tables. Get my computer fixed - mac owners may know the problem: flashing ? mark on grey screen. Eeek!  Worse case scenario is a corrupted hard drive and loss of everything. Oh my, raining and pouring!

Today though is beautiful blue, clear and still.  Car past MOT this morning.  Driving back from Brixton I notice there are still some stunning autumn colours around.  Must be all the rain we had last summer.  Lots of trees empty now though,  crooked skeletal branches.  I love trees without leaves -  a body stripped bare and all the internal structures on view.  Luigi cooking some more wonderful italian dishes.  He came back from Italy armed with recipes from friends - lots of grating lemon zest and beating of eggs.  Polpette. Polenta. Succo di pomodori.  We talk more about living in Venezia, with a studio out back and a gallery-shop in the front.  We scheme and dream and plot the next few years while clattering round the kitchen.  Two cats even!  Poor Luigi, as heartbroken as me over the loss of Lilly.  Meantime, all the work that was achieved in Havelock studio last month was worth the effort - sold the lot at the Affordable Art Fair.  Success.  High five Lulu and George!

In preparation for my sojourn at Kings I have gone a bit bonkers with my Amazon ordering: 5 pairs of new pyjamas (including leopard and zebra print), a duvet and 4 covers, a hooded dressing gown (heaven for my bald head) and a royal blue yoga rug (for bed, not bending).  I also bought myself a lava lamp - hypnotic blue with yellow-floaty-lava-blobs (something to stare at when the brick wall view becomes too tiresome). I managed to break it almost immediately by putting on top of the radiator.  The extra heat turned yellow-floaty-lava-blobs into a huge yellow string of solid motionless snot-like substance.  Live and learn.

Hope everyone well and happy.  Thanks for all your messages and visits and supper cooking! Greetings and love around the globe. And thank goodness for "No Drama Obama".  Special hallo to everyone across the pond...

Back soon, and guaranteed to be still writing from Grassmount! tch

PS. All my body parts seems to be working ok, heart lungs and kidneys got through the round of tests successfully. Also had to grin and bear an unexpected bone marrow biopsy ten days ago...another apple corer moment!