Wow. Kkfan That is fast. I still have to bug my doctor to talk about palliative care. But 18 months ago I went through fast with my late wife. Six weeks from diagnosis to death in hospice.
I know the feeling of the world being out of control. And I know how important the hard conversations are. And making memories. Just the telling people can be a challenge in itself.
I'm making the assumption that palliative care is in place because they are not attempting any treatment. But know that in our case palliative care was a blessing. They made pain management possible and made our limited time together precious and important.
Are there any questions that we can help you with?
I am so sorry for your husbands diagnosis.
I understand how overwhelming this will be for you both.
Please post here if you need support from those of us who have travelled the cancer diagnosis journey.
I am a lung cancer patient but fortunately to date it is non metastatic but do understand your fear.
I have so much fear and anger, and with covid complicating everything, we both feel very alone. His care has been amazing, but such a roller coaster. We were told it was throughout his body and referred to palliative. Then, after a bone scan, his thoracic surgeon said no, not in his bones. We had such hope for 10 days. Lung biopsy was done and the radiologist called to say yes, it was in his bones. We crashed back to earth quickly. Palliative has told me what to say when I call the final ambulance. Just too quick, but we both understand that quality of life is important also. I spend a lot of time just being strong for him. I know I am needing to look after me, but it's hard
So common it has a name - we call it the Emotional Roller Coaster. There are some pretty steep drops and some tough curves in the cancer Coaster.
I found when looking after my wife, I wanted to do it all myself. I couldn't. I needed breaks. I had my own cancer treatment going on so I had to make space for that. I had to look after myself. Eating was a challenge for me. Who wants to make a meal when you have been in hospice for twelve hours with an hour drive on either end? Sleeping was a challenge. Thoughts charging through my head, all the things that need to be done. And exercising definitely took a stern talking to get myself going. Yet to be present for her I needed to do all these things. Self care isn't selfish. It is what allows us to process and truly help in this time.
Kkfan , there is a small book called A Caregiver’s Guide that is available free from a lot of hospice and palliative care programs. Your social worker should be able to get you one. It covers everything from dealing with your emotional state to how to get a patient from a bed to a wheelchair. Won’t solve your problems, but it might make life a little easier. Hang in there, try not to get overwhelmed. I know, easy to say, not so easy to do.