Dear Red Trouser Day Supporter, a note from Julia regarding the RTD Patient Community and the next meeting on 2nd Sept @ 6pm
I write this a little later than I expected – but I do hope you will be able to make it this coming Wednesday 2nd September at our usual time. Hope to see you there. Yesterday, Paul and I supported the walk that Andy Gillham and his family organised, accompanied by Robert Chapman from our RTD family. As you may know, Andy is now in a hospice yet he was cheering us on from there wearing his RTD T-shirt.
If we need a reminder of why raising awareness of this dreadful disease is so very important, we only need to think of you, Andy. And by the way, we attracted enough attention yesterday to have quite a few conversations with people curious enough to ask, about bowel cancer and its light, often ignored, symptoms.
Our last Happy Hour was almost a month ago on the 5th August and the highlights were:
Klotho reaches the next stage
This project began, as you all know, as a RTD funded initial body of work. Dr Aishani, while taking up her place as an oncologist registrar, still retains a lab place to complete the body of work that our funding helped her begin. The next stage is under way, with Dr Chong and Dr Kontovounisios (Principle Investigator and Senior Author). We will keep a watchful eye on this ground breaking research as it moves on.
RMCH is now Covid Free
This has been achieved by vigilant staff, who are tested every week, with patients every 5 days.
There is real concern as patients continue to present far too late, with stories that some are fasting for 3 months, as a way of trying to slow their condition. This is absolutely NOT an alternative treatment and we need to get the word out that cancer patients should not wait!
Paul and Julia have now attended a meeting of the PREVAIL project and will contribute through RTD as it unfolds. Professor Gina Brown aims to establish the PREVAIL Pathway, a new pathway beginning at diagnosis, which will be available to the general public, so empowering patients to be aware of what pathway and treatment they can expect, so that they are able to make sure they are getting the best treatment, and to challenge where they are not. PREVAIL is planned first as a pilot, with CNS phone calls with patients across 10 to 15 hospitals, with the second phase moving to digital data capture. The public nature of PREVAIL will also help raise awareness pre diagnosis, though it, itself begins at the point of diagnosis. Come and find out more about this vital piece of work.
Shape of Happy Hours:
Our agenda continues with a maximum of 10 minutes each to the first three items, so leaving a good half an hour for number 4 focused on patients:
- News of RTD funded research – where there is any to report since last time
- News update on practical patient matters, especially from our clinicians, in particular our clinical nurses
- Breaking news on any relevant research by the RMCH – where there is any to report since last time
- Patient discussion – any tips, useful experiences, initiatives, requests for help with anything
And of course, please let us know what you would like to hear about next time? Let us know and we will do our best to cover it.
Look forward to seeing you on the 2nd September. If you would like to join the meeting send a note to firstname.lastname@example.org