Gullet (oesophagus) cancer

A support group for anyone affected by gullet cancer (also known as oesophageal cancer) to come together, share experiences and ask questions.

Breakthrough pain - end of life care

SalCinnamon
Posted by

Hi. I haven't posted on here for a while. I honestly haven't got the energy to recount all the contextual history for this post, but please look on my profile - it's all there. Sorry.

My dad is now receiving end of life care at home - he is now a 'care in bed' patient as he has lost pretty much all of his strength. He was on 240ml morphine, midazolam, hyoscine through syringe driver and 175 fentanyl through patches. However, he still has excruciating breakthrough pain spikes roughly once a day  which are only eased with stat injections of 40ml morphine and further hyoscine (the morphine elixir does nothing) The palliative care urgent response have been amazing at getting to him quickly when this happens but it agonising to be with him when he goes through this. He has had staggering courage though out the last 2 1/2 years (he's  had an unusual and gruelling journey) and has maintained an amazing philosophy on life and death which has never wavered until now. He has had enough and wants it to be over and this is so tough to hear. We all feel so impotent. It's cruel.

I've posted this in the hope that someone has any experience and advice with how to help control these pain spikes. The nurses and doctors refer to them as colicky pain. They admit he has extremely complex pain management needs. Yesterday they took him off the morphine in the driver and increased the fentanyl to 350ml. He still had a breakthrough today for which he was given the  morphine stat dose.

Many thanks in anticipation. 

Sal

Sbt123
Posted by

Hi Sal,

i too haven’t posted on here for a while. My dad too is having end of life care, though at a hospice. He only has a matter of days left now. He is now being kept mainly sedated so to minimise the spikes. We are hoping with all our hearts that he slips away sleeping. He has had so much pain, agitation and confusion... it is truly heartbreaking to watch. There have been moments when I wished I had the strength and courage to end it for him, he has been through too much.

meds wise, I think he is now on:

oxymorm 60ml

lorazepam

medazolam

haliperodol

buscopan ( we presume it’s spread to the bladder as he in excruciating pain when trying to pass urine even though he is catheterised)

he did have hypscine patches to dry up the secretions, but they’ve put something into the driver to do that since yesterday and his chest is very rattly and hasn’t got the strength to cough now.

i so want this nightmare to be over, but I know as soon as it is I’ll want him back.

thinking of you at this awful time,

sarahx

SalCinnamon
Posted by

Hi Sarah. Thanks for replying at this awful time for you and your family. I sometimes think it would be better if dad was in a hospice - for mom at least- but they both want him at home and they do get alot of medical support. My mom is shattered though as she  hasn't had a full nights sleep for weeks. I too wish it was over yet dread it at the same time.

My dad keeps saying that if he were a horse they'd shoot him out of kindness; he wants to die, is suffering and has lost all dignity. It doesnt seem right, does it? He still gets breakthrough pain and his meds get increased with no effect. 

I wish you and your family all the best and hope you all find some peace soon. Thanks for replying - it means alot. 

Sal x

Sbt123
Posted by

Hi Sal,

my dad passed away peacefully at 7pm last night holding my hand. It’s the end of all his pain and suffering, but just the beginning for mine.

fly high with the angels.

sarahxx

SalCinnamon
Posted by

Oh Sarah, I'm so sorry for your loss. Take comfort that your dad is at peace and please look after yourself now. 

You are in my thoughts,

Sal xxx