The big update- by Ninja Ink

 UPPER CLATFORD, NR ANDOVER - TUESDAY 16 AUGUST

Dear Bloggers  Firstly an ENORMOUS apology for leaving you all in the dark since the end of June.  Mea culpa entirely.  When I left hospital after the second bout of chemo, I told Tobina I would take over since she was moving temporarily to the parentals here in Upper Clatford, looking for a house, commuting back to London for her physio work etc etc.  However, I was unable to do this.

(Incidentally the night I left St George’s I managed to lose my phone.  This was a complete nuisance as no texts, WhatsApps etc for two weeks plus.  Rhod, my computer/phone guru, chose a phone and ordered it for me.  It arrived the following morning.  But Plusnet were hopeless and the new Simcard took two weeks to get from Yorkshire to Balham……..)

Meanwhile, my first week at home was grim.  No appetite, nauseous, running to the loo, metallic taste to everything - even water was difficult to swallow.  Just ghastly.  I stayed in bed with Pete and Dad as bodyguards, one on each side.  Pete did not always stay long, but the faithful Dud never left me and curled up round my neck like a scarf nuzzling my ear.  Such good company - no questions asked, no demands except the odd biscuit.

The second week home was a slight improvement, tho I still had to go to St George’s twice a week for blood tests and massive infusions of potassium.  When you don’t eat and are sick as a dog all the time you lose your electrolytes, and a very low potassium count is potentially dangerous.  The six-hour IV procedure is tedious beyond belief.  So, Tuesday and Fridays were always at St G’s for the day.  By this time I have lost 3 stone (42 lbs) and at Waitrose have to have one hand on the trolley and one on the waistband!  Of course I am far too Scottish to go out and buy a new wardrobe, so muddle through with belts, safety pins etc.  Then I found a box in the garage called “Size 14 Lily Pulitzer trews”.  She is a well-known American designer and has a small store in Rehoboth Beach, Delaware - an Atlantic resort that Peter and I used to visit frequently to see family.  So, I am saved with some fun quirky trousers - pink with green frogs, beige with brown labs, black with red lobsters -

 So, to return to the serious stuff, I am now in about the third week out of hospital and wake up one morning with feet and ankles swollen like balloons.  The Day Unit on the Tuesday put me on antibiotics, but by the following Tuesday both legs looked like tree trunks and were oozing a watery liquid.  The on-call house doctor was summoned and I was admitted immediately and put on it IV antibiotics.  ANOTHER week in the b. hospital with the filthy food and agonisingly painful legs.

So, let me put you out of your misery and finish all this waffle by saying that they let me home after a week, but here we are on 16 Aug still with gigantic swollen legs which have to be dressed twice a week at the GP practice by the lovely Tor Godfrey.

Blog manager has pointed out gently that it may be helpful to share the plan for today and tomorrow. So there is to be no more chemo, a firm and intelligent decision made by me and the medical team and anyone who saw me during the treatment would agree.  What happens next is all in the hands of the gods.  No Dr can predict time frames so today is today.  Immunotherapy and other ideas that were floated are not appropriate and so we are not looking at a miracle treatment but living for each day and dancing in the rain. 

Despite all of this, I managed a trip to the Suffolk department of the family near Woodbridge and the very handsome son of some old mates (T T-D) drove me there and back in the van which was amazing.  I was a little concerned that my concentration/reflexes might not be quite 100 % (they call it chemo brain).  We had a lovely time up there just for one night, left the next morning at 11am and were at Thurleigh Road by 2pm.

And now I am with my “brother” Tom who I grew up with in Denham.  He and his daughter, the lovely Tobina (my Goddaughter and Blog Manager) are my two Executors, so yesterday we “tweaked” my 2017 Will and lo another important box is ticked.

I return to London on the train at lunchtime and hope that Tim S-H has managed to feed Pete and Dud without being bitten by Pete this time……..

So, over and out and I will endeavour to be more timely with my posts.

Love to all - Jakki/Jakes/Auntie Rotter xxxxxxxxx  aka Ninja Ink - nom de plume