What happens now?

[RooBear]

Hello.  I am a first time poster on this forum.  My dear mum has advanced, inoperable PC which has spread to her liver and breast.  She is five months from diagnosis, bed bound, receiving hospice care at home.  Sadly, she was not a candidate for chemo following a horrible infection after the sent was fitted (resulting in a six week stay in hospital).

 

Three weeks ago I felt we were close to losing her but she was prescribed 4mg of Dexamethasone which gave her her appetite back, but not really the big boost we were all hoping for; she is sleeping 18 hours a day.  She is now receiving 2mg and by the end of this week will be on 1mg a day. She is fading, despite the steroids.  My question is, what will happen when she comes off the dexamethasone completely?  As I understand it, steroids only mask what is happening inside.  I cannot see how my mum will survive without the dexamethasone.  Does anyone have any experience of this steroid and what happens when it is stopped?  Is decline rapid at this stage when nothing more can be done?

 

So many questions, many of which I know can't be answered.  I think I'm just reaching out to people who are or have been going through similar.

 

Thank you

 

 

[Support Team]

Hallo RooBear,

 

Thank you for joining this forum, it sounds such an overwhelming time for you all at present.  I am sure you will find support of others on the forum will be helpful and so very supportive. 

 

I wanted to direct you to some information that may be helpful, one of the Webinar's facilitated by PCUK might be helpful for you to access and have a listen too. These webinars are recorded as this gives you the opportunity to watch these in your own time and at your own pace.  This webinar is titled Living well until the end of life, Palliative Care for pancreatic cancer'. This webinar is delivered in a very compassionate manner by two Palliative Care Consultants and may be helpful for you.

 https://www.pancreaticcancer.org.uk/support-for-you/webinars/29-june-2022/

 

You may also wish to touch base with the Support line nurses if you find others are unable to answer your questions here. https://www.pancreaticcancer.org.uk/support-for-you/specialist-nurse-support-line/

 

Our thoughts are with you at this time RooBear, hoping that Mum is comfortable and supported by the Hospice team at home.

 

With our special thoughts.

 

Administrator

Pancreatic Cancer UK

 

[Erin0110]

I'm so sympathize with your situation and give all my love and support to you.