… and here I am again.
When my husband was diagnosed I started a thread about it which shows the subsequent months. This may or may not be helpful for you. I’ll point out that you’ll definitely see the ups and downs, the problems, the attempts to solve problems, and the point at which moved from fighting the cancer to managing his death. You might be surprised how many of the problems were not the cancer but bureaucracy, assumptions, and mundane crap.
As early as post #16 (of 444) I am talking about treating vs. hospice type situations, and in #17 I’m addressing “support groups”. As I said there, I have not always had very good results. As @Ann_Hedonia points out, some support groups have a heavy survivor bias would could become a problem if things don’t work out well for you. I tried an on-line group and when my husband’s condition went off a cliff they simply didn’t know how to talk about it, or to me. The ones the hospital recommended were way too heavy on “Jesus saves!” for my taste (I’m not a Christian). I did find the thread here to be helpful for me, and I eventually found my support in real life… after he was gone. Oddly enough, the place I worked helped me out a lot more than I expected (despite one cruel manager, but that was dealt with). It was a hard, lonely time for me.
It’s also OK to pull back at times. Don’t isolate yourself too much, but sometimes you need to disengage for a bit. Again, in the thread I linked to there’s a point where I start using @Qadgop_the_Mercotan as an intermediary (#278) which is bit weird, but it worked for me. At the time it felt right and I’m still grateful to him for the support and help he gave at the time.
I will also say that sometimes what you don’t do can be as important as what you do. Three days before my husband died I got into a literal shouting match with a nephrologist who wanted to subject him to a full urological work up and put him on dialysis. The final volleys were “He’s going to die if you don’t do this!” to which I replied “He’s going to die no matter what we do! Probably this week!” Such a course of action would have done nothing to improve my husband’s situation but would have subjected him to stress, pain, and robbed us of some of our remaining time together. Also, he had already refused to go on dialysis, which is why the doctor was trying to convince me to OK it.
My sister is a hospice director. She has much to say about how doing too much to stave off death can lead to a more miserable end. Know when to say no. Know when to quit something that isn’t helping. Know when to change course.
I feel like I’m being a bit negative dwelling on death and the end, but that is how my husband’s story ended. So much of cancer treatment leans on the positive and so seldom do we talk about when death happens despite our best efforts. Some people who are positive and supportive will desert you death looms on the horizon, it’s sad but it’s the truth. Others will step up and be there for you even more than before.
So if you have questions about what the terminal end of such a journey is like feel free to ask me. I am willing to be there to the very end, and talk about how things come to that end if that’s what you need at the time. Conversations around death and dying have helped me cope with death and dying. My preference is to face the truth when that occurs rather than engage in hopeless optimism.
When we knew my husband was terminal that day was not the end. There were still more days ahead, and still more meaningful and beautiful moments. The sunlight is never more golden, the birdsong never more sweet, the spring never more beautiful than when you know time is running out. The most remarkable day was just a few before he died when he “woke up” and had a day of greater clarity, when he was fully himself again and we truly spent a final day together.
Unfortunately, I knew that was a sign of impending death. So did my sister, who told me to stay by his side and brought me food and ran errands so I could spend that precious, precious, oh so precious final day with my husband. I suspect he knew it, too. We tried to relive 30 years with our words that day, with the spring sunshine falling through the window.
I have to stop now. I am crying again. But I would not trade that memory for anything.