On 20th August 2009, the day of Mum’s funeral, I first noticed a lump.
On 17th December 2020, today, I got a call from the Robin Jones, the Head of the Sarcoma Team at The Royal Marsden with the results of scans and checks carried out 10 days ago.
They’d promised that if I’d been good and not grown any more lumps or bumps that they’d release me back in to the wild! And… I’ve… been… good…. no lumps or bumps… so after 4,137 days in their care, roughly 102 scans and 68 appointments, they’ve officially signed me off. They’ve been amazing throughout. So supportive and caring. OK so they’ve poked around a LOT and cut out bits and bobs, but their stitching is pretty neat! I have never enjoyed the mammograms AKA boob squishes but I got my own back last Christmas by wearing Christmas Pudding nipple tassels which made us all giggle when they removed my gown for a scan!
Robin has been incredible and truly gone the extra mile looking after me but also when I’ve been contacted by someone just diagnosed with Phyllodes in the UK. He’s been on the end of the phone or email and set up meetings/scans and appointments at short notice as well as being a ‘second opinion’ where required. Phyllodes is a small world (fortunately) and Robin, before coming to the Marsden was on the team who looked after my gorgeous friend Andi in the US.
So I feel spoilt that Robin made the time today to make the call himself and check that I was OK about being discharged from the Marsden’s care. I am. BUT he has asked me to pop in with a cake or biccies for a gossip when COVID is over and to say hello!
Finally, I wrote this in April 2010 ….”It’s been a while since I updated you… mostly because I’m finding it difficult to know where I am. I don’t know if I’m waiting for something to finish or something to begin but I feel lost.”
Maybe it’s now time to dust down that map/globe and head off to my next destination.
Loitering in a waiting area between scans (next up CT) and someone is playing the piano as I attempt to snooze. So reminds me of growing up and Mum playing the piano when she thought nobody was listening.
My biopsy results have been reviewed by Cyril (superstar path at Royal Marsden) and discussed at the MDT meeting along, apparently, with lengthy discussion about phyllodes and our online support group!!!
Decision remains that the biopsy showed benign fibroadenoma. HOWEVER because of my history and weirdness of phyllodes they’ve decided to bring me back in September to rescan, measure and possibly biopsy (although if it’s grown, they may just do surgery and not bother with biopsy again). So all good. Thanks to those asking. I’m quite chilled about it all. I have the bestest consultant and team at the Marsden and I know if I was worrying they’d bring me in sooner. So for now just lots of bubbles required…. always fizz!!
Results time for my 6 monthly scans. If there’s nothing to report, they say I may go to annual checks!!!
No Evidence of Disease again… Finally I‘m on annual checks! AND my fave consultant made sure he saw me to give me the good news… AND now he’s head of the sarcoma unit here, he’s writing something for our Phyllodes Support Group AND he suggested I get my MRI and X-ray for my odd ankle to him to review. Hurrah!! Calls for bubbles and opera!