One more before I forget myself

I wish I had something more profound to share as I shuffle off this mortal coil. My brain is so muddled as I can’t eat and continue to lose lucidity everyday. It’s now hard to keep down water too. Hopefully that means it won’t be long before I go.
This existence is torture. Everyone keeps saying just get them to up your pain meds but it’s not about the pain. The pain I have is from mechanical issues to do with the esophagus, tumours and FOUR stents. Not to mention the ascites fluid pressing down on everything to boot.
I can’t think straight much less be wise and loving and give people hope. If anything I just want to sleep forever - I’m so done. I wake and it’s all day vomiting, can’t keep anything down. Maybe I will for a few hours but it’ll come back up later eventually. Could be a blockage further down, could be something else. 
Oh how I wish I’d just go in my sleep. None of this active dying death rattle bullshit. Just. Take. Me. Now. 
When my family sit with me, I don’t know what to …

No Final Words

I wish I could leave everyone with personalised letters or words of wisdom. But at this stage, all I want to do is sleep. I'm so tired, so out of it. So sick of food. Sick of reflux. Sick of pain.

I can't go on. I've spoken to the doctors and I've decided ultimately that I will not continue with anti-cancer treatment. No more chemo. Maybe some radiation to keep my esophagus open. But we'll see.

We may not need it. I don't know if I'm close to death, or how close I am to it - all I know is I'm just done. No need for sad goodbyes or teary hugs. I'm okay. I'm ready.

This all sucks beyond compare.... I never got a break to just "be". But now I get to sleep forever. That's not so bad.

I've had a good life. I've seen a lot of art, seen many of my favourite musical artists live and travelled a little. I have no regrets, no complaints. Those are my only final words I guess.

Such is life.

We Do Hear You

They say hearing is the last to go when one dies. I think this is 100% true because it's such a heightened sense when everything else is failing. For months now, I've heard my family through closed doors and walls speak about me. "She said" "Her pain this" "She hasn't that". I both love and hate it.

Love that they care about me so much and are taking such good care of me. But I hate that I have become a problem that needs fixing. I know they'll say that's not the case, but there is no way around not feeling like a burden.

Especially when you see the stress signs on your family. More fighting with each other, but not with me. More grey hairs. Emotional ticks manifesting physically. Lack of sleep. Worry. Depression. It's all to be expected. I would be the same.

But fuck, does it suck to be the one "causing" it all. But I'm not talking about that today. Today I want to talk about what most caregivers probably don't r…

Deciding when to die

Many people use "fighting", "battle" and "warrior" in relation to cancer patients. I dislike these terms because we didn't choose to go into battle, and fighting is exhausting. It also makes it sound like when we succumb to our disease, that we lost the fight. Like we didn't try hard enough.

Or worse, when some choose to stop treatment, that they're giving up. And that's the crossroads I'm at now. I've got appointments with my palliative nurses, surgeon, oncologist, GP etc to talk about my decision and what their opinions might be.

I'm lucky that my family understand and fully support whatever I choose. The same with my fellow cancer patients/caregivers - the support I have is overwhelming, really. It makes me feel like I'm not giving up, I'm merely just tired and it's OK to want to sleep.... forever.

I worry I'll be in pain but I'm already in pain now. Great discomfort and pain and inability to get a good n…

There is no support anywhere for people with esophageal stents

Seriously. All I find are journals (that don't end well for the patient) or stent diets and other bullshit I don't need. Where are the patient accounts? Even in the support groups, everyone is too fucking different. Too many different symptoms. Stents in different locations. Permanent stents. Temporary. Biodegradable. Stents migrated so were removed.

I have found only one person with a very similar situation to me. Also on keytruda (immunotherapy) and also with esophageal stent in the GE junction. He also had a second stent inserted because of blockage. And now he also has the similar feeling I get when eating/resting.

If you're out there looking for some support, here's my stent story. I think I've told it before but fuck it, here it is again. Blame it on the chemo brain.

So my tumours had been growing and blocking the junction of where my stomach and esophagus meet. Eventually they closed up so much I couldn't even swallow saliva. This was when I flew home to…

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…

It's Not All Bad

Everyday can be a living hell but it is often peppered with happy moments with my friends and family. Sometimes, I cry, lamenting how I don't want to die. Other days I cry, wishing I was already dead. The bottom line is, I want my old life back - the one I had pre-cancer symptoms and treatment.

I don't want a new normal. But I know if I was given the choice - surgery or not - I might take surgery. Despite the fact that I hate hospitals, hate surgeries and have never recovered well from them.

How can you turn it down when you're in the moment? Doctors staring at you, your family looking at you with hope in their eyes. You don't want to let anyone down. So even if you don't want it, you choose the path of least resistence and a lot of readjusting.

At this point, I have no decisions to make. We are just waiting to see what the cancer decides to do. The next step would be FOLFOX chemo, which my oncologist assures me is less gruelling than the chemo they had me on. Well…