My wife passed away from Synovial Sarcoma over the weekend.
Hello, I'm the husband. I will be writing about death in this post, so please don't read this if you're not in the mindset/not curious.
I wanted to write this post to provide some observations/perspectives on the death/decline portion of cancer, in part because when I was looking for information online I was always curious about how someone actually dies from cancer, but I simply couldn't find anything.
Again, this is not easy read, especially if you're going through active treatment. It is however valuable information if you are wanting to know how it may end.
For context my partner was diagnosed with Stage 4 Synovial Sarcoma of the hip/leg in October 2024. She was 33-35 years old during this journey. The tumor was very large in her leg, and some small tumors had already metastised in her lungs. She underwent the main chemotherapies, including one experimental one, but ultimately what happened was that as time went along, her ability to actually physically handle chemotherapy disappeared.
That said, I think she always had issue with chemotherapy. She could never take the full dose and as time went along, they always decreased the doses until it reached a point where her bloods were consistently low enough that she couldn't seek treatment. Treatment initially was positive in that it achieved a response, however it was never a full response to the point of remission. With radiation, they actually managed to make the tumor in her leg dormant, however there was always still activity in her lungs. Ultimately, she passed away from lung cancer as far as where the tumors were (they also ended up in her spine).
The main issue she had regarding her decline was having low bloods. Essentially the chemotherapy had destroyed her bone marrow's ability to produce bloods, and so in the final months she had to receive a lot of blood transfusions. Bloods are also what make you feel "fine" otherwise you get very tired/anemic. The problem with that however is that your body develops anti-bodies and it becomes less effective over time, so it's not a permanent solution
One thing that happened in the final weeks was that she just had more and more complications (I assume from the tumors + low bloods) and they happened quite rapidly towards the end. One relatively horrific thing that happened was that a tumor had developed in her spine which resulted in her fracturing her spine. She had to be in a brace.
The big thing that really affected in her final months was her mobility. She would spend a lot of time in bed and moving anywhere was a struggle.
Other complications that developed in the final weeks was intense neuropathy. It almost felt like it came out of nowhere. She said that it felt like having knives in her hands/feet. It also just seemed that she was in more and more pain generally speaking as time went along and had to increase her painkiller doses. She also had to have an nasal oxygen thing to keep her oxygen up.
As far as passing, it was very rapid and seemingly out of nowhere. She was told that she had a few more weeks left from the palliative doctor and she'd just been transferred to the palliative ward. She was very tired that night and the next day although she was seemingly okay in the morning (talking etc.) and they'd done tests with her, apparently a nurse came in and noticed that she was unresponsive and moaning. Essentially she passed away quite rapidly after, though apparently in comfort. We still don't know why she passed away, but potentially from a blood clot.
It was a huge shock to everyone, including the doctors. They simply did not know what happened or why she declined so quickly. It was a shock to me because she was fine and conscious when I last spoke to her. Like she was talking normally and was just her regular self. I think because we were always expecting to have those few weeks left.
It was also a shock because when my step-dad passed away from lung cancer it was a very, very gradual decline. I remember him laying in bed ready to pass for like 6+ hours until he actually passed.
Anyway, I might leave it there, but I'm happy to answer any questions. I have a lot of perspectives on what's happened, including regarding my own grief, but it will take time to process.
Thank you.