PeterM new member introduction.

PeterM 3 days ago

2 replies

Edited by admin 1 day ago

Hello there. I'm a retired creative media professional . With interests and skills to offer and share.

I'm looking for support, conversation and activities- to counter the isolation of dealing with a ( second) terminal diagnosis on my own.

COPD, I'd been successfully managing it for years and maintained a plateau in my symptoms spO². 92-94% and no infection exacerbations for almost 2 years. My situation shifted in March 2025 when I developed Oesophageal symptoms. Which unfortunately the GP described as Indigestion... resulting in a delayed referral , hospitalisation and diagnosis with OGJ Adenocarcinoma.

Though the progess and prognosis is a major concern. It's access and involvement with like- minded people who may share in my other interests that I'd like to find in the Marie Curie community. So I'll be looking forward to seeing how this introduction fares. Greetings and Best wishes to all.

interests and skills- IT ( programming and latterly AI/LLM), Music and Video production, Independent Travel, I've visited 70+ countries. Languages, history, culture, geopolitics. Latterly I've been working with AI/ LLM. With an initial focus on Social Issues, notably including access for those less articulate and digitally proficient. Combined with an interest in combatting disinformation which has shifted towards my personal experiences being let down by agencies and institutions which I turned to for help during my recent difficulties.

Like so many people my problems largely began at the time of the Pandemic. But worsened and accelerated from January 2023. I've been doing a lot of research with the LLMs about my particular situation. My oncologist said that no-one gets past 5yrs and that there are no remissions - actually global 5yr survival for my OGJA is 30-60%. On good days I'd like to be amongst them - especially given the rapid advances in Immunotherapy and particularly m-RNA vaccines.

It's difficult to gather information about how to access Private care for eg. Immuno- marker testing and possible treatment ( for which I'm planning some crowdfunding possibilities).

admin 1 day ago

Hello PeterM,

A warm welcome to our Online Community, thank you for joining and sharing your situation with us. 

We’re sorry to read about your diagnosis and all you’re going through. We’re also sorry to read that you’ve been let down by agencies in the past. Is there anything in particular you’re looking for support with at the moment? 

Our Support Line offers information and emotional support to people affected by terminal illness, they can be contacted for free on 0800 090 2309 if you have any questions or would like to discuss what support may be available. 

Hopefully others here on the Community will see your post and share their experiences with you too. 

Take care,

Marie Curie Online Community Team 

PeterM 1 day ago

Thank you for your reply... I ended up here having been promised a referral to Marie Curie visiting befriending. I forget which of the various support channels I put in place after my diagnosis and discharge from hospital.. Oncologists, oncology nurses, palliative care nurses, Royal Trinity Hospice, Samaritans Caller support. I have still heard no more, and if I haven't heard from the palliative care nurses I shall call them again later. Having tried to make contact last week after a very unsatisfactory conversation with Lambeth Social services. Having initially been told by the Oncologists that I could not be considered for any form of treatment at my last appointment I was told that I might be able to get some generic radiotherapy. And that the GI team would order a new CT scan and raise a referral to " Medical Oncologists" who actually prescribe treatment. I'm now in limbo until the beginning of October waiting for news of possible treatment almost 3 months after being told I was ineligible.

Dealing with the complicated medical situation aside, I'm mostly in need of social support, company and conversation. About everything else other than my health struggles and terminal diagnosis. Though obviously I'll be happy to compare notes about that side of things also...