Updated: Jun 8
We were delighted to be able to have some members meet at Peter Mac’s Wellbeing Centre for our May meeting. We had 5 members meeting face to face and another 13 joining online. This month was a patient and carers only meeting with no guest speaker scheduled. Despite this we still (as always) managed to run out of time and could have stayed for another 2 hours sharing our stories and thoughts.
We had three new members joining us this month – two patients and one carer. Diagnosis and treatment – and how those around us respond and show their support – impacts all of us in so many different ways. It is always so lovely to get the perspectives from both patient and carer.
The group spoke on the importance of getting the right help at the right time with a particular focus on psychology services. With so much happening so quickly, mental health services play a critical role for patients and carers alike. This is compounded by the need to make quick decisions with limited information. A great example raised was the use of feeding tubes. While the answer can never be wrong, the decision on whether to use a feeding tube and when to do it is often seen as a indication of progression by many patients and can be quite stressful.
Longer term side effects were also discussed. The common issues of dry mouth and fibrosis are experienced by many at varying degrees. There were some great suggestions on how to manage these shared by the group.
It was great to hear from members of the group who have made travel plans now that restrictions have eased. We look forward to hearing about their travels and maybe seeing some photos on our group Facebook page!
Our next meeting will be held on 1st June. We look forward to seeing you then. Please register your interest.