There have been two PAWS-GIST Clinics so far this year.
In April six and last week eight patients, who had either registered or been referred by their doctor to attend the clinic, travelled from all corners of the UK to Cambridge.
On each occasion patients met each other for the first time at the welcome dinner which was held on the evening before the clinic and once introduced the conversations flowed easily.
We recently discovered that the hotel we use in Cambridge is dog friendly, and last week, two of our group brought their furry friends to stay as well…
“Slinky and Buddy” were not allowed into the hospital next day (much to Slinky’s annoyance) but Buddy had a nice time on the open top bus exploring Cambridge with his Mum😊while Dad was in the clinic.
Meeting another person with a PAWS-GIST diagnosis is rare, this is what makes the PAWS-GIST clinic so special. Meeting another person in your age group when you are a child diagnosed with PAWS-GIST is ultra rare. Last week we were joined by two young paediatric GIST patients accompanied by their parents.
All expressed huge gratitude for having been introduced to each other and explained next day that meeting at the welcome dinner had given them a sense of calm, having previously spent such a long time feeling isolated and alone.
Everyone was able to discuss their individual circumstances at length with the specialist team, ask all those questions that have been worrying them, have their scans explained and understand next steps for their unique situation.
Feedback:
“It was useful to hear up to date information about treatment possibilities and to understand more about the tumour”.
“Increased my understanding hearing the experiences of others”.
“The specialists were all very nice and seemed to understand me”
“Great to see my scans, have them explained to me and agree next steps”
“I am sure my attendance has helped my local oncology consultant and he has said he is pleased I went”
For these clinics our teams consisted:
- Adult consultant oncologists – Dr Ramesh Bulusu, Dr Jennifer Harrington & Dr Georgina Wood
- Consultant Endocrinologist – Dr Ruth Casey
- Paediatric Oncologist – Dr Gemma Barnard
- Research Nurse – Doreen Milne
- Specialist Paediatric Nurse – Alison Dowsett
- Back-office – Matt Brown
- Patient Director – Jayne Bressington
