Back from Italy last Wednesday for appointment with consultant on Thursday.
Results - good?
My consultant told me Daisy is not growing significantly, so my 'team' (Royal National Orthopaedic Hospital and University College Hospital Sarcoma units) is adopting a wait and see approach. I have a MRI and follow-up appointment in March 2012.
I am not sure how to take the news, on one hand I am glad Daisy isn't growing because if she was she would disturb other vitutal structures in my chest and or arm, on the other hand the inevitable is being delayed - at some point she has to come out and I am looking at 70-50% re-occurrance.
Today I am looking on the bright side but mentally dealing with Daisy is hard, especially when I use my right arm in a lot during a day, I have a constant throbbing ache, along with infrequent high voltage shooting electric shock like pain running through my arm, even with the painkillers. But I am still sleeping though the night, and after over 18 months with few good nights of sleep I am grateful.
Wow! I sound like a grumpy old woman, so back to Italy.
I loved Italy and it appears Daisy did too, because she behaved, not one jolt or ache. I spent a week travelling my train, from Milan to Venice, back to Milan, then to Rome and finally in Venice.
I ate my first delicious 'Italian' pizza in Milan, walked and crossed canal bridges in Venice, rendered speechless in the Vatican City, charmed by Rome and fell in love with the culture and colours of Florence (my favourite city). I took so many photos it'll probably take me a week to go through them all, but it will be a labour of love.
Travel tip: Take a gamble and go to Italy off-season
November is usually very wet in Italy, but my friends and I decided to take a gamble. We had one morning of spitting rain, all other days greeted us with blue skies and sunshine. While it was not warm it was unseasonablty mild. And off course, we were out of tourist season so, the queues moved quickly and to our delight we got to see many historic buildings and artifacts up close and personal.
Now I am back I am on a quest to find others within the UK who also have this rare disease, so please get in touch if you have fibromatosis or know someone who does.
Final word from Daisy - she hates being back and tells me every day in her special way. Now where are those pain killers!
Picture: Me in front of The Duomo (Catheral) in Milan, Italy.
