What to do ?

[Lost123]

Hi,

My mum was diagnosed with extensive .small cell lung cancer , back in April . She went through chemo, immunotherapy and a week of radiotherapy but yesterday the consultants have said there is no more treatment available/worthwhile.

My parents have not wanted a prognosis and so yesterdays news was a complete shock to them. From now on a doctor will call to house to determine next best steps re pain management and palliative care  (we live In Europe)

They still do not want prognosis and I respect that , however I find myself struggling with the uncertainty of what lies ahead. I want to help them and they will accept help from me, but I have no idea what lies ahead or how long we are facing. Practical things like "what should I planning with my siblings practical support" to "do we cancel Christmas plans so we can all be together".

I know every individual is different but I am struggling to find out some sense of what we are facing into - I honestly respect my parents decision to cope with the news in the way that they have but I would like to know more. Any advice ?
 

[Tom Galli]

Lost,

Extensive stage small cell lung cancer is a beast. The first best chance of affecting outcomes is successful first line treatment and your post reported that treatment was not successful.

Your report of pain management and palliative care implies hospice care. While no one can predict the amount of remaining life, in the US, hospice care is not provided unless one has a projection of 6 months or less remaining life. I wouldn't know what the Irish standard is. I do however strongly endorse hospice care because end-stage lung cancer can be a very painful experience. Here is some information about hospice care.

What should you be planning for your mother's practical support? When I failed my 4th line treatment and was investigating hospice, I planned to rent a hospital bed (an articulating bed to allow head elevation) and bed-side toilet accommodations. I also investigated the availability of rented portable oxygen equipment and an IV stand. If your mom has a tablet device or an iPad, you might want to investigate getting an articulating stand (Amazon link) so she can use the device without needing to hold it. 

You should all be together, my view, during Christmas. This should be a joyful time of sharing family memories. Eating might be a problem but if not, I'd plan a grand Christmas feast with all the trimmings. Sometimes taste buds change with medications given in hospice and tartness or bitterness can become desired. Treats with lemon or lime flavor or dark chocolate might be especially appreciated.

I am a man of faith and planned to attend to my spiritual needs. Your mother may find comfort in her faith so I'd arrange regular visits from the clergy to support and sustain her.

My hope is for your mother to enjoy life right up to its end.

Stay the course.

Tom

[Lost123]

Thank you, Tom - I appreciate that.  In Ireland we are blessed, in that all palliative care is free to all and organised by the medical care team.  The planning is more about what we should prepare ourselves for mentally.

We are a spiritual family too - however faith is complex at this time.  But we have had an amazing life with an incredible woman who has brought such joy to our lives.

I will be on this forum, no doubt over the next period of time- and value all the contributions.

 

[LilyMir]

So sorry to hear about your mom. Small cell LC is terrible. It took a family member of mine, 6 months from first diagnosis (was much delayed despite symptoms due to COVID and medical incompetence). His treatment also failed, which usually would buy a year or so as I read. I though heard of some patients living much longer but prognosis is is generally bad. I am sure your mom would love spending Christmas with her kids and hopefully she would still be in a good shape for you all to enjoy it. Best wishes.