Straddling the line between death and hope

I haven't been able to speak to a lot of fellow patients who are terminal. I've met one who is terminally ill but not with cancer, so that has helped a little. Other patients who have been close to the end either didn't want to talk about it or stayed in denial for as long as possible.

There was one that I nearly got into conversations with but his decline was so rapid, it was impossible to ever get to speak. My heart broke as I spoke to his wife during his last days, I felt like I was there with her as he took his last breath.

One day, that will be me.

I try to prepare myself for it as best I can. Things you normally wouldn't think about - your physical footprint like places that have your address, sorting through physical possessions so your family don't have to. Your digital footprint - all your passwords, blogs, social media. Financial footprint - direct debits, credit cards, subscriptions. I have prepped everything so that my husband can easily "take over" and manage it until he decides he no longer wants to.

I also have care for my end of life planned out with my palliative care team. It's either hospice or at home, preferably at home but it depends on my condition and how much they're able to manage my symptoms and pain at home.

Yet at the same time, I am EXPECTED to stay hopeful and positive. It's so fucking unfair. It's like double the burden that I never asked for, that I do not deserve. None of this is fair - I've lived my life trying my best to be a good person. I could have probably eaten better and exercised more but I was never reckless - I don't drink or smoke anymore. But none of it matters.

I'm EXPECTED to just accept it, but also DON'T accept it. There are no handbooks for the terminally ill - the ones whose doctors say there's no curative option. At this point, I am only looking at more chemo if the cancer starts growing again.

The other options, like self-funding immunotherapy that might not even work, are even less appealing. Why spend so much money on something that is a "maybe"? Why chase treatment? I've seen fellow patients chase treatment until their last breath. Was it worth it? I want to ask them.

It's bullshit, this line we have to straddle. Some days, it's worse than others. People have this idea that if we look fine, we must be feeling fine. But no, I'm in excruciating pain some days and I can look fine and carry on a conversation. So don't go around telling terminally ill people that they don't look sick.

The fact is in young people, the declines happen rapidly so I have to be prepared for that. No last minute platitudes or regrets if you didn't spend more time or say more things to me. I don't have time for that. I'll be too far gone, too close to being gone forever.

So say what you want to say now. Don't wait. Don't pin everything on "hope". Hope is for suckers. Yet it's all I have left to go on. There's very little of it - but it's there. Yet everyday, something chips away at it. Trouble eating, sleeping, pain, discomfort, feelings I can't even describe accurately to doctors.

There is nothing fun or sexy about this cancer. It's ugly, isolating and takes away everything good in your life, everything you could possibly need while going through treatment. Socialisation, food, reading, sleeping.... nope you get none of that. You get nausea, fatigue, brain fog, difficulty staying asleep. Too bad.

Such is life and such the is balancing act forced upon us.


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