Hello all, hoping that I can get support, and offer in return, on our family situation.
I posted the following in the Ask a Nurse section and had some really good advice (shared here for diagnosis/prognosis context)
Hello, I am hoping for some insight please to help me understand and support a relative in relation to their care.
They have stage 4 oesophageal cancer with local lymph node spread. They are unable to swallow anything, including saliva. Treatment has been declined due to the poor prognosis and level of impact. They are fed by a RIG tube and have been since leaving hospital in mid April (NG tube feed during that time). On diagnosis in mid-May the non-treatment prognosis was c.2-3 months.
In recent days their voice has worsened significantly. We understand from their consultant that worsening is a proxy for tumour progression. Whilst all cases are clearly different, absent further CT scan to monitor progression, to what extent is this worsening a significant step and what are the potential timescales now? As a family we are focused on keeping them comfortable (ironically they are gaining weight since the RIG was installed and bright in themselves) and supported?
Many thanks for any advice that can be offered.
I've since asked the following follow up question but been directed here instead as a better place to ask. If anyone has any experience to share I'd be very grateful.
Hello. Writing again in the hope others might have insight or thoughts.
We’re now about 2 months into the original 2-3 month prognosis. In the last few weeks the voice has significantly deteriorated to a barely audible whisper. There has also been a thickening of saliva and whilst a medication was prescribed it was stopped due to headaches as a side effect.
Yet on the reverse, weight is being maintained via feed tube and activity continues, albeit with increased fatigue in the following day. The local macmillan team have prepared end of life medication in the event of need.
As a family we are really struggling to understand what’s next (and finding it hard to even think that way, it feels callous). We understand the challenge of estimating next steps together with what they are. I guess I’m answering my own question here but would welcome anyone’s thoughts, experiences or simply words of support.
Cheers
