Four years ago we actually were having the happiest time of our lives. We’d survived Covid and finally gotten to go on the much postponed holiday to Orlando that we’d eagerly been saving for for 3 years.
Coming back the worst we thought we’d have to deal with was holiday blues. My husband (let’s call him AD) started peeing blood. And it all went down hill from there. Within a month he had a catheter fitted whilst investigations went on and by Christmas we had the news it was cancer. Kidney cancer, which he needed operation on in the New Year. We were told it was unus for someone so young to have this type of cancer but anticipated after the long recovery time from surgery he might need monitoring but be ok again.
Sadly things didn’t happen that way, the cancer had spread and we were transferred formerly into oncology care. From there we knew it would never be cured but had a quiet hopeful reassurance it could be slowed down enough for plenty of years ahead.
Year on year though more complications happened and treatment had to change or new pain appeared. He also seemed to be hospitalised every year around Christmas for different reasons and we couldn’t get a flow or pattern to navigate our lives easily.
Then last year he had back pain and right before Christmas came the hospitalisation on cue. This time though it caused much more pain and upheaval creating a need to change our lives and home set up and everything between. And we did it because anything to have him home and comfortable as possible is worth it.
Roll on a few more months and things continue to roll ever downward. My poor husband is navigating the cancer and rehabilitation as best he can but financial worries grip us as he can no longer work. The admin seems endless and complicated. We’ve had to almost learn about the system when we are bone tired and just survinvg. We are in a place of continuous uncertainty of our future, of his recovery, of our finances and it grinds you down hard.
We were let down by his employer whose process failed him and put him through a benefit for four months of waiting where finally he got relief that some pay would come in. Only for a week later for it to be taken away because of a mix up.
Watching my soul mate have to absorb a world where he has to reduce his life and expectations only then to receive news that he could have as little as a couple of years left to live has to be one of the most soul destroying moments i’ve had to witness so far. And amongst all the grief of what was, what could be and what will be is so much anger at the cancer, at the slow system, at the unnecessary stress of employers, of the unrelenting movement of life continuing.
Im learning we are in a special club no one hopes to find themselves in - where unless you or someone close is experiencing it the rest of the world tries its best to relate but can walk away at any time.
We have done so well, given everything we have been up against physically and emotionally. But it’s so unrelenting. The endless admin, the decisions, the alertness to go needs or flares and then trying to sludge your way through life, house cleaning, work, it keeps me up at night not wanting to go to sleep to have to do it all again. Only because I am so bone tired and at night the grief, the fear of future loss and just the depth of our love for each other cuts deep.
