Dear Temi.
I'm so sorry for you. I don't know if I can help you a lot but I will try to give a perspective of what you can expect and want you can do to live the rest of your days as comfortable as possible.
I am a Nurse who as worked in domiciliary Hospice Care for a couple of years. I've done research in this area and although I cannot say that I'm an expert, I will try my best do give you some tipps.
I don't know which medical attention you are receiving at the moment, but sometimes the transition from curative treatment to palliative treatment is done very abrupt and most oncologists that I know have a really hard time acknowledging and referring their Patients to a good palliative care team.
Almost as if they were giving up on their Patients. But that's absolutely not the case. And I can assure you, there is a LOT to be done so that you are comfortable in your final days - a LOT! but you have to look for the right team of people do to it. Palliative Care is not a "wait for it" care is ACTIVE care! A normal acute hospital care won't know how to manage the most symptoms in the palliative phase - so much I can tell you.
The first thing you should consider is where do you want to be and from who do you wish to receive your care.
A lot of Patients wish to stay at home, but for that you need a good network of people around you, who feel comfortable with giving you drugs and managing the situation for you. You also need a local Home Hospice Team. If that's not the case you should consider to take a look at local hospicies and chose a place where you feel "geborgen"
There are a lot of symptoms that are typical for the final days, ascites will most likely in your case be one of them but can be relieved with a small Punction in your belly so you can lay and breath better. It sometimes helps to relief nausea and vomiting as well and has in this phase little to none side effects, when you keep hydrated.
Anorexia (appetite loss), nausea and vomiting, but shortness of breath, extreme fatigue, delirium, hiccups are also common. But everyone is a unique individual - so there is no telling what will came at you in your situation.
ALL these symptoms are manageable with proper medication. And you don't need to be afraid to starve or to feel thirsty because these two things are manageable through adapting your nutrition through small portions of food that you can take after anti-emetics. There is parenteral nutrition as well but most likely you won't need it. Most of the Patients do not feel hungry at all during these days. In a Hospice or at Home you can make a list of your favorite meals at try to eat them if you like over the day in small portions. When you don't feel like it - you don't need to eat at all. Ypu will see that the metabolism of your body will be completely altered so that you will likely won't need much or any at all nutrition in the last days.
There are plenty of myths and fears regarding nutrition in palliative patients but from my experience I can assure you, if you have a good Team of people around you, you won't need to worry about these things.
If you cannot drink, the medical team will give the right amount of fluids (subcutaneously for example) so that you are stay comfortable. If still you have a dry mouth there are plenty of oils and cream that can help, and little sips of water are very helpful.
I hope I didn't Schock you with my answer.. I don't know how fare you are down the road to be thinking about all of these things. If you wish you can send me a email or we can "skype" (I speak german) if you have further questions.
I wish you all the luck for the rest of your way, that only you yourself can "conquer". I can assure you, it is possible to have a quiet and good death, even with Cancer - please search for a good team of people who can support you!
And get ready.
Goodbyes, thank you's, I'm sorry's, I love you's...
It makes everything a lot smother and easier.
Viel Kraft wünsche ich dir!
In are in my thoughts,
Keep strong!
Best regards,
Ana
Dx @ 29 yo. Mum (2 y.o.) & Wife
12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d
12/2017: Aspirin, Vit. D3, Curcumin, Multivitamin.