Showing posts from December, 2018

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…

"Take It One Day At A Time"

You hear it all once you get diagnosed. "Take it one day at a time." "Make the most of every day." "Everyone is different." "Thoughts and prayers." "Get well soon."

When you get diagnosed stage 4, sometimes people start talking about you in the past tense.... to your face. "You were such a good friend." Excuse me, what? These aren't my lone experiences. Since starting my own support group for young people with gastric/esophageal cancer, I've seen how none of us are alone in our experiences. Despite being alone in our respective lives.

Most of us have great support networks. Friends and family. Some have amazing doctors and specialists. But where is the rest of the support that you see for cancers like breast, leukemia, lymphoma, melanoma... etc. GI cancers are not sexy and nobody wants to talk about them - chalking them up to be "old people's cancer". Oh they've lived their life, it's sad but at …

I'm done with chemo!

Since my last update, I've lost two 'cancer buddies'. Their declines were rapid towards the end, and heartbreaking to watch from afar. There is nothing more I want than to be able to hug all my fellow patients and their caregivers from my support groups. They are there for me as I am there for them, and we all have a special bond that can't be explained or replicated.

We love one another on a level so deep, it hurts when one of us hurts. On the flip side, when one of us has a win, it's a win for us all. Whether it be a clear scan, a good day or just a good moment.

I've had my last round of chemo of cisplatin and 5FU - I can't express how happy I am to not ever be connected to that fucking bottle for 120 hours again. I just got disconnected 3 days ago and my family are doing Christmas early today so let's hope I can eat and not throw up the food.

Eating hasn't been great, and neither has sleeping. I have pains everywhere, mostly from nerves where the…