Supporting someone with incurable cancer

For carers, friends and families of people with a terminal diagnosis to discuss their emotions about the prospect of losing their loved ones, as well as practical issues about palliative care and end of life.

terminal illness

Posted by

hi there

I am new to this group and unfortunately did not ever think I would be part of this.My dad was diagnosed with oesophagus (primary), stomach, lung, nodule and liver cancer on boxing day. he does not want treatment or anything that will prolong his life, has a DNR in place and also a note to refuse hospital admission, he wants to go sooner rather than later. he is not eating and has lost over 13 Kilo's over the last 2 months or so (he hid the weight loss prior to diagnosis) he now does not eat and is able to drink about 1000ml a day maximum and is now very tired all the time, he also has a bad heart. he had had a lot of falls this week due to his blood pressure dropping and we have been told today that he cannot get out of bed or his chair unless someone is with him so I am going to try and get nurses arranged through social services on Monday. its all happening so fast and no one is able to tell me how long he has. we were told that he likely does not have months so we were told more like weeks, but not an idea if this was 2, 3, 4 or 12!!!. is there anyone else in a similar situation or that has had a similar experience as I am trying to figure out the right time to take time off work. im scared I leave it too late and I miss time with him but also scared I take time now and he lasts longer than weeks. my heart is breaking but I see him every day and night and do all I can for him but the not knowing or having an idea of how long he has is killing me. does anyone have a rough idea of how long my dad has? im sorry I might be clutching at straws here but I just cant deal with not knowing so thought someone here might have an idea if they have had a similar experience.(I know there are no guarantees or exacts but just looking for anyone who has been through something similar) thank you in advance

Posted by

Hi Speckles 21 how long is a piece of string? Sadly it sounds like your dad has made his choice with not eating or drinking very much and it is maybe the only control he feels he has left over a god awful situation for you all.

I am not sure that anyone will know how much time he has left, but why not just take the time just now and be with him for as long as you are able. Sadly, I can relate to your situation very much as my Dad had a similar situation and it was very advanced by the time they found it and we got a little time but not a lot. The time we got was in weeks and in single figures but everyone will be different. 

Sending very best wishes your way for now.

Posted by

Hi Gail 

I’m sorry to hear about your situation  

thankyou for your response. I’m currently sitting at my dads waiting for nurses as he has lost the strength to do his own personal care. He also can’t swallow his painkillers anymore. 

I think I have to take the time now as I don’t think it will be long. 

Thankyou S

Posted by

Unlike the movies or television, it has been my experience that most doctors will never tell you "how much time is left". Not only is it highly variable between patients, but it gets people on both sides upset if they guess incorrectly. My advice is to focus on the now and present and just live day to day with your father. After my mother refused treatment, she lived another three or four months without symptoms and then three weeks once the symptoms came rushing back.

My grandfather got sick (not cancer related) and my grandmother was unable to take care of him so he ended up in the rehab wing of a nursing home until he got better. Unfortunately, my grandfather at 90 years old was ready to go and so he stopped eating and only drinking very little fluids. He hung on three weeks before he passed away, much of that time unable to take care of himself but alert and would talk with me. In fact, the day he passed away, I went there to spend some time with him. We talked about an hour and then he went to sleep and passed away about thirty minutes later. I was taken by surprise. 

It is tough to have to deal with it but I was glad to be there when both my mother and grandfather passed away. 

Posted by

i am in a similar position. My mum has ovarian cancer which had spread. She is 80 but was totally independent until the week she was diagnosed. She’s now bed bound. She has one round of chemo which made her very ill and has decided to opt for quality over quantity of life and is no longer having treatment. I’m wondering when to stop work. Apart from being bed bound she’s in good spirits - sorting things out, giving things away etc 

You mentioned Social Services Care but it really sounds like your Dad should be receiving palliative care. I’d ask his palliative care team if they can give you any indication.
A nurse friend told me that first her patients stop eating, then drinking, then talking. And then the time is near.    

My advice, which I should take myself,  is to stop work sooner rather than later as you never get this chance to be with your parent again, and today they are probably going to be in better health than next week - would be horrible to look back and wish you’d gone earlier, you’ll never regret time spent with them.