Cancer Timeline
I thought I'd make a public post that showcases the cancer 'journey' thus far. That way, people have an entry to return to for reference. I'm a bit of a planner like that, live with it. ;)
So, I first started getting symptoms March 21st 2018 - there was a pain in my sternum when I would swallow food. I would learn later this was my GE junction and that tumours were slowly growing into it, blocking the passage into my stomach.
Instead, what doctors told me was that I had gastritis and to take omeprezole for a week to see if that helped. It didn't. The pain got progressively worse and I changed my diet to a low acid (aka boring as all fuck) for months to help alleviate symptoms. Nothing helped.
Not only was I miserable going from doctor to doctor, specialist to specialist, worried about how I'd pay for all these tests - I was in progressively worsening pain and I couldn't eat any of my favourite foods.
My depression and anxiety started to rear their ugly heads. Panic attacks became frequent. I wasn't being treated for any of this - all I had were a LOT of doctors appointments set weeks to months apart due to how the US healthcare system works.
I got fed up. I decided to fly home to Australia to get diagnosed and treated. So flew home I did, on June 14th 2018. Nearly 3 months after I'd noticed symptoms and got no treatment from doctors in the US.
I couldn't keep food down on the flight. I was throwing up saliva. The next 3 weeks saw me lose even more weight as I could barely manage liquids, much less solids. We had no idea what was wrong - my endoscopy wasn't for another week.
Once I got seen, my GI doctor disappeared, only to tell me she saw "scar tissue" and to go see this GI surgeon urgently the next day. What the fuck?
So off to him I went, Mr Grin Reaper, we called him, because he didn't hold back when he gave you bad news. Like offhandedly saying, "Oh she didn't tell you it was tumours? Well it's likely tumours."
I'm sitting there gobsmacked. Wait... what? Tumours? As in... CANCER? No no no cancer doesn't happen to people like me, it happens to other people. I can't have cancer. You must be very wrong.
Sadly, a text that came through 30 minutes later on his phone showed that my biopsy confirmed for poorly differentiated adenocarcinoma. Also known as one of the worst kinds of histologies I could have gotten.
My cancer was diffused and aggressive and difficult to treat, much less cure.
So off to CT and PET scans I went, still unable to eat or drink at this point. I was on my last legs, feeling faint, fading fast. My husband was still in LA and I had to tell him over the phone that I had cancer. Man, fuck that shit. It still didn't feel real.
I did the scans like a champ. My kidneys were killing me, trying to get rid of the poison they inject me with but I couldn't drink water to help them along. I felt like I was on death's door.
That's how I felt as I walked into the surgeon's room to have him confirm what I feared. It's definitely cancer, and it's metastasised.
You see, during the months I was waiting to be see in the US? I found a lump in my neck. Dr Google and my sister in law who was a doctor both confirmed this to be a lymph node that is often involved in advanced gastric cancer. I already had a feeling, but you never think it really is cancer. Google tells you everything is cancer.
For once, Google was right.
He said because it had reached that node, that the cancer was too advanced to operate on - that we'd only be doing palliative chemo rather than curative. Prolong life. Quality of life. You hear those words a lot. They mean nothing to me some days when I'm in pain and discomfort.
So that's that - they quickly got me into surgery to insert an esophageal stent into the GE junction so that I could swallow again. The stent is a metal piece of mesh that expands and squishes the tumours, effectively creating a stiffer section of the esophagus. It restricts what I can eat because certain foods will get blocked since it doesn't have the muscles to push foods down. But it did allow me to eat and drink again, orally. No feeding tube or IV nutrition lines needed. Just a lot of acid reducing medication and pain medication for the tumours that were pressing against nerves.
Shortly after, we spoke about chemo options. I won't get into that now, suffice to say I ended up on a clinical trial for immunotherapy + standard of care chemo. So I could be on chemo + placebo or chemo + immunotherapy. But we don't know because it's in the double blind phase of research. Australia is still so far behind in cancer research, espescially stomach cancer.
Some of the groups I'm in are majority US residents and they seem to get more information about how their cancer is treated, whereas in Australia the doctors tell me "these things don't really matter in the grand scheme of things". Um, what?
No. Next month is Stomach Cancer Awareness Month and I want people to talk about this. Talk about how we need early screenings. I've met too many people the same age who are either stage 4, undergoing surgery or have died from this and esophageal cancer. This cancer is aggressive and doesn't wait for you to get your shit together. So help me get the word out, will ya friend?
So, I first started getting symptoms March 21st 2018 - there was a pain in my sternum when I would swallow food. I would learn later this was my GE junction and that tumours were slowly growing into it, blocking the passage into my stomach.
Instead, what doctors told me was that I had gastritis and to take omeprezole for a week to see if that helped. It didn't. The pain got progressively worse and I changed my diet to a low acid (aka boring as all fuck) for months to help alleviate symptoms. Nothing helped.
Not only was I miserable going from doctor to doctor, specialist to specialist, worried about how I'd pay for all these tests - I was in progressively worsening pain and I couldn't eat any of my favourite foods.
My depression and anxiety started to rear their ugly heads. Panic attacks became frequent. I wasn't being treated for any of this - all I had were a LOT of doctors appointments set weeks to months apart due to how the US healthcare system works.
I got fed up. I decided to fly home to Australia to get diagnosed and treated. So flew home I did, on June 14th 2018. Nearly 3 months after I'd noticed symptoms and got no treatment from doctors in the US.
I couldn't keep food down on the flight. I was throwing up saliva. The next 3 weeks saw me lose even more weight as I could barely manage liquids, much less solids. We had no idea what was wrong - my endoscopy wasn't for another week.
Once I got seen, my GI doctor disappeared, only to tell me she saw "scar tissue" and to go see this GI surgeon urgently the next day. What the fuck?
So off to him I went, Mr Grin Reaper, we called him, because he didn't hold back when he gave you bad news. Like offhandedly saying, "Oh she didn't tell you it was tumours? Well it's likely tumours."
I'm sitting there gobsmacked. Wait... what? Tumours? As in... CANCER? No no no cancer doesn't happen to people like me, it happens to other people. I can't have cancer. You must be very wrong.
Sadly, a text that came through 30 minutes later on his phone showed that my biopsy confirmed for poorly differentiated adenocarcinoma. Also known as one of the worst kinds of histologies I could have gotten.
My cancer was diffused and aggressive and difficult to treat, much less cure.
So off to CT and PET scans I went, still unable to eat or drink at this point. I was on my last legs, feeling faint, fading fast. My husband was still in LA and I had to tell him over the phone that I had cancer. Man, fuck that shit. It still didn't feel real.
I did the scans like a champ. My kidneys were killing me, trying to get rid of the poison they inject me with but I couldn't drink water to help them along. I felt like I was on death's door.
That's how I felt as I walked into the surgeon's room to have him confirm what I feared. It's definitely cancer, and it's metastasised.
You see, during the months I was waiting to be see in the US? I found a lump in my neck. Dr Google and my sister in law who was a doctor both confirmed this to be a lymph node that is often involved in advanced gastric cancer. I already had a feeling, but you never think it really is cancer. Google tells you everything is cancer.
For once, Google was right.
He said because it had reached that node, that the cancer was too advanced to operate on - that we'd only be doing palliative chemo rather than curative. Prolong life. Quality of life. You hear those words a lot. They mean nothing to me some days when I'm in pain and discomfort.
So that's that - they quickly got me into surgery to insert an esophageal stent into the GE junction so that I could swallow again. The stent is a metal piece of mesh that expands and squishes the tumours, effectively creating a stiffer section of the esophagus. It restricts what I can eat because certain foods will get blocked since it doesn't have the muscles to push foods down. But it did allow me to eat and drink again, orally. No feeding tube or IV nutrition lines needed. Just a lot of acid reducing medication and pain medication for the tumours that were pressing against nerves.
Shortly after, we spoke about chemo options. I won't get into that now, suffice to say I ended up on a clinical trial for immunotherapy + standard of care chemo. So I could be on chemo + placebo or chemo + immunotherapy. But we don't know because it's in the double blind phase of research. Australia is still so far behind in cancer research, espescially stomach cancer.
Some of the groups I'm in are majority US residents and they seem to get more information about how their cancer is treated, whereas in Australia the doctors tell me "these things don't really matter in the grand scheme of things". Um, what?
No. Next month is Stomach Cancer Awareness Month and I want people to talk about this. Talk about how we need early screenings. I've met too many people the same age who are either stage 4, undergoing surgery or have died from this and esophageal cancer. This cancer is aggressive and doesn't wait for you to get your shit together. So help me get the word out, will ya friend?
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