"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 least they're old.
NO. Every day, my support group grows bigger and bigger. I started it in August 2018 and in less than 4 months, we have over 100 members. For a cancer that STATISTICALLY shouldn't affect people younger than 50. But no, we have numerous people in their 20s, 30s and 40s who have all gone through the exact same process as me.
We were ignored by numerous doctors who told us "You're too young. It's just GERD/acid reflux/[insert some other stomach issue other than cancer here]. Take this over the counter med and you'll be fine."
Well, guess what? Those OTC meds end up masking your very serious progressing symptoms of GI cancer. The pain starts to get worse. Your swallowing is getting more difficult. Nausea increases. Night sweats for some. You go back to the doctor - get more tests done. Xrays/ultrasounds clear. Blood work fine. "The good news is, it's not cancer." - I had this said to me multiple times in the 3 months I spent chasing an answer for my pain.
The only way I could have been diagnosed was with a gastroscopy/endoscopy and/or CT/PET scan. But they would never order CT/PET unless something showed up in your blood work. But here's yet another thing most don't know about these cancers - there are multiple types and causes for them, and most of them DON'T SHOW UP ON SCANS. That makes it hard to diagnose, treat and prevent recurrence.
Treatment also seems to vary greatly across the world. Because these cancers are more prevalent in Asian countries, Japan and Korea lead the pack in survival rates because of early detection and more radical surgeries. So much so, that I've seen people in online support groups seriously consider going to Japan/Korea for further treatment.
DO NOT get me started on treatment costs. I'm lucky, I live in Australia. My treatment - chemo - is free in the public system. I also have private insurance so I don't pay a cent when I have procedures done in the private system. (I paid the excess for the year but that was it). Considering the prosthesis (esophageal stent) placed inside me costs $3000 a pop, that's not bad at all. AND I HAVE TWO. I dread to think of the costs involved if I'd stayed in the US. Who knows, I'd probably be dead by now.
There is little to no support specific to young people with terminal cancer, especially stomach cancer. There isn't a single support group for stomach cancer through Australia's Cancer Council. I've reached out on Twitter about suggestions on how to get my story told. Many people said to reach out to cancer groups, cancer council etc .... I have. Cancer Council have some great support avenues - but you have to find them or be told about them. I was lucky that I was assigned a social worker through palliative care who helped advise me about all this.
I was even referred to several psychologists to help me deal with not just the cancer bullshit, but my existing depression and anxiety. You know what happened? Not once, not twice but thrice did I have them cancel on me because they were sick. Look, I know you're human but having multiple doctors cancel on you when you're desperate for help? It fucking sucks and is a huge blow to your already teetering mental health.
At the start of all this, I fell into the deepest darkest depression I've ever experienced. Everyday, I wanted to kill myself. I wanted all of my suffering to be over. I couldn't see a bright side to anything. Everything was wrong and evil and unfair.
It still is, but now I want to kill myself less. So the anti-depressants I got put on are working. They help push deep seated issues under the rug so I can deal with all the cancer nonsense.
That's not the half of it though. You know what else they don't offer support in? Nutrition. It took 3 dietitians until I found one that was actually helpful. But doctors and nurses say "eat whatever you want" - how is that helpful to someone who lost a ridiculous amount of weight- all of it from muscle mass? These specialists are the top of their field with years of experience in GI cancers and yet they still go by statistics and "research" that they read in their medical journals.
IT'S BULLSHIT. I have had more support and knowledge about my cancer from online support groups -- wait -- I should said online support GROUP because there was only one stomach cancer support group we could find on Facebook. NO JOKE. There's a couple for esophageal cancer. And none for young people with either - hence my starting one. But yes, I have learned more from them than my doctors, bringing up different treatments/diagnostics to my oncologist only to be shot down due to "reasons".
For example, you can be gene tested to find out if 1) your cancer is genetic 2) what type of chemo drug you'll respond best to. And that brings us to my next frustration about all of this....
CHEMO.
I was warned before starting that I would be tired, nauseated and that it could send me into early menopause. What they didn't tell me was just how much it would fuck with my hormones, causing hair to grow in places they didn't before. Also just how much it affects your GI system, causing great inflammation. You know what a person with a GI cancer doesn't need? MORE INFLAMMATION.
So chemo is extra hard on GI cancer patients because the side effects directly affect the cancer sites, making us extra sick. And while mine is "palliative chemo" aka NON CURATIVE - they still had me on high doses. I couldn't handle it after 2 cycles, having them drop the dosage by 20%. Too many side effects. I handled the last 4 cycles much better by comparison but I still wanted to die while I was connected to my 5FU bottle (120 hours woo).
I'm on a break until the cancer shows growth again, at which point they'll put me on chemo again. I honestly have no idea if I want to accept treatment. Everyday, even on good days, I wish this was all over. I'm not built to be a "fighter". I'm so fucking tired.... which brings me to my last point (for now).
PTSD.
You hear about it in relation to war vets, POWs, abuse survivors etc. It's usually seen as something that "happens" after a trauma. The notion is that you are now in the "healing" stage of PTSD and no longer IN trauma.
Not true for cancerrrrrrrrrrrrrr. No. We get PTSD during treatment, because really, treatment never ends even when you're cancer free. We are all sick of hospitals, always preferring to not go in even when we're symptomatic. We have scars, pains, and drawers full of meds - both old and new. Everything is just cancer, cancer, cancer. We can't escape our trauma. People who have been cancer free or who are on curative paths tell me that they constantly fear recurrence. One caregiver had to go on anti-anxiety medication because of her constant fear that her husband's cancer would return. And her fears were not unfounded. His cancer did come back, and he fought it but it proved too much in the end. We lost him in September this year.
This is purely anecdotal at this point but so far it seems like GI cancers are more aggressive in young people than our older peers. The theory is that our cells are still regenerating/splitting so quickly that the cancer spreads quicker whereas it would be slower in an older person. Who knows? Not sure if they're doing any research into this. Probably not because there seems to be little research done in relation to this cancer in young people!
The first thing I looked up when we found out it was cancer was the survival rate. The 5 year survival rate for gastric cancer is less than 5%. This is statistically including people of all ages. But you know what else I found? A medical journal that stated research showed gastric cancer seemed more fatal in young people. Of course, we all want to beat the odds but it still sucks knowing our chances are a little slimmer.
Me? I'll probably never beat the odds unless I'm on the immunotherapy in this trial and my body responds well to it. That seems to be my only hope at this point for a longer life.
So yeah... I try to take it one day at a time - but nobody ever really "makes the most" of anything. You think my husband and I spend 14-18 hours per day staring into each others eyes while cuddling and whispering sweet nothings? Nah, we're on our phones/computers/gaming console barely speaking to each other. Like any other normal day. Like any other normal couple.
If you're reading this and are going through the same thing, don't beat yourself up if you think you aren't "making the most" of your life. Don't feel you need a bucket list full of 'exciting' things. You don't need to skydive or travel the world to have lived a full life. I have done neither of these things (OK I have travelled a little) and I can say that I will die at peace with my life. No regrets.
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 least they're old.
NO. Every day, my support group grows bigger and bigger. I started it in August 2018 and in less than 4 months, we have over 100 members. For a cancer that STATISTICALLY shouldn't affect people younger than 50. But no, we have numerous people in their 20s, 30s and 40s who have all gone through the exact same process as me.
We were ignored by numerous doctors who told us "You're too young. It's just GERD/acid reflux/[insert some other stomach issue other than cancer here]. Take this over the counter med and you'll be fine."
Well, guess what? Those OTC meds end up masking your very serious progressing symptoms of GI cancer. The pain starts to get worse. Your swallowing is getting more difficult. Nausea increases. Night sweats for some. You go back to the doctor - get more tests done. Xrays/ultrasounds clear. Blood work fine. "The good news is, it's not cancer." - I had this said to me multiple times in the 3 months I spent chasing an answer for my pain.
The only way I could have been diagnosed was with a gastroscopy/endoscopy and/or CT/PET scan. But they would never order CT/PET unless something showed up in your blood work. But here's yet another thing most don't know about these cancers - there are multiple types and causes for them, and most of them DON'T SHOW UP ON SCANS. That makes it hard to diagnose, treat and prevent recurrence.
Treatment also seems to vary greatly across the world. Because these cancers are more prevalent in Asian countries, Japan and Korea lead the pack in survival rates because of early detection and more radical surgeries. So much so, that I've seen people in online support groups seriously consider going to Japan/Korea for further treatment.
DO NOT get me started on treatment costs. I'm lucky, I live in Australia. My treatment - chemo - is free in the public system. I also have private insurance so I don't pay a cent when I have procedures done in the private system. (I paid the excess for the year but that was it). Considering the prosthesis (esophageal stent) placed inside me costs $3000 a pop, that's not bad at all. AND I HAVE TWO. I dread to think of the costs involved if I'd stayed in the US. Who knows, I'd probably be dead by now.
There is little to no support specific to young people with terminal cancer, especially stomach cancer. There isn't a single support group for stomach cancer through Australia's Cancer Council. I've reached out on Twitter about suggestions on how to get my story told. Many people said to reach out to cancer groups, cancer council etc .... I have. Cancer Council have some great support avenues - but you have to find them or be told about them. I was lucky that I was assigned a social worker through palliative care who helped advise me about all this.
I was even referred to several psychologists to help me deal with not just the cancer bullshit, but my existing depression and anxiety. You know what happened? Not once, not twice but thrice did I have them cancel on me because they were sick. Look, I know you're human but having multiple doctors cancel on you when you're desperate for help? It fucking sucks and is a huge blow to your already teetering mental health.
At the start of all this, I fell into the deepest darkest depression I've ever experienced. Everyday, I wanted to kill myself. I wanted all of my suffering to be over. I couldn't see a bright side to anything. Everything was wrong and evil and unfair.
It still is, but now I want to kill myself less. So the anti-depressants I got put on are working. They help push deep seated issues under the rug so I can deal with all the cancer nonsense.
That's not the half of it though. You know what else they don't offer support in? Nutrition. It took 3 dietitians until I found one that was actually helpful. But doctors and nurses say "eat whatever you want" - how is that helpful to someone who lost a ridiculous amount of weight- all of it from muscle mass? These specialists are the top of their field with years of experience in GI cancers and yet they still go by statistics and "research" that they read in their medical journals.
IT'S BULLSHIT. I have had more support and knowledge about my cancer from online support groups -- wait -- I should said online support GROUP because there was only one stomach cancer support group we could find on Facebook. NO JOKE. There's a couple for esophageal cancer. And none for young people with either - hence my starting one. But yes, I have learned more from them than my doctors, bringing up different treatments/diagnostics to my oncologist only to be shot down due to "reasons".
For example, you can be gene tested to find out if 1) your cancer is genetic 2) what type of chemo drug you'll respond best to. And that brings us to my next frustration about all of this....
CHEMO.
I was warned before starting that I would be tired, nauseated and that it could send me into early menopause. What they didn't tell me was just how much it would fuck with my hormones, causing hair to grow in places they didn't before. Also just how much it affects your GI system, causing great inflammation. You know what a person with a GI cancer doesn't need? MORE INFLAMMATION.
So chemo is extra hard on GI cancer patients because the side effects directly affect the cancer sites, making us extra sick. And while mine is "palliative chemo" aka NON CURATIVE - they still had me on high doses. I couldn't handle it after 2 cycles, having them drop the dosage by 20%. Too many side effects. I handled the last 4 cycles much better by comparison but I still wanted to die while I was connected to my 5FU bottle (120 hours woo).
I'm on a break until the cancer shows growth again, at which point they'll put me on chemo again. I honestly have no idea if I want to accept treatment. Everyday, even on good days, I wish this was all over. I'm not built to be a "fighter". I'm so fucking tired.... which brings me to my last point (for now).
PTSD.
You hear about it in relation to war vets, POWs, abuse survivors etc. It's usually seen as something that "happens" after a trauma. The notion is that you are now in the "healing" stage of PTSD and no longer IN trauma.
Not true for cancerrrrrrrrrrrrrr. No. We get PTSD during treatment, because really, treatment never ends even when you're cancer free. We are all sick of hospitals, always preferring to not go in even when we're symptomatic. We have scars, pains, and drawers full of meds - both old and new. Everything is just cancer, cancer, cancer. We can't escape our trauma. People who have been cancer free or who are on curative paths tell me that they constantly fear recurrence. One caregiver had to go on anti-anxiety medication because of her constant fear that her husband's cancer would return. And her fears were not unfounded. His cancer did come back, and he fought it but it proved too much in the end. We lost him in September this year.
This is purely anecdotal at this point but so far it seems like GI cancers are more aggressive in young people than our older peers. The theory is that our cells are still regenerating/splitting so quickly that the cancer spreads quicker whereas it would be slower in an older person. Who knows? Not sure if they're doing any research into this. Probably not because there seems to be little research done in relation to this cancer in young people!
The first thing I looked up when we found out it was cancer was the survival rate. The 5 year survival rate for gastric cancer is less than 5%. This is statistically including people of all ages. But you know what else I found? A medical journal that stated research showed gastric cancer seemed more fatal in young people. Of course, we all want to beat the odds but it still sucks knowing our chances are a little slimmer.
Me? I'll probably never beat the odds unless I'm on the immunotherapy in this trial and my body responds well to it. That seems to be my only hope at this point for a longer life.
So yeah... I try to take it one day at a time - but nobody ever really "makes the most" of anything. You think my husband and I spend 14-18 hours per day staring into each others eyes while cuddling and whispering sweet nothings? Nah, we're on our phones/computers/gaming console barely speaking to each other. Like any other normal day. Like any other normal couple.
If you're reading this and are going through the same thing, don't beat yourself up if you think you aren't "making the most" of your life. Don't feel you need a bucket list full of 'exciting' things. You don't need to skydive or travel the world to have lived a full life. I have done neither of these things (OK I have travelled a little) and I can say that I will die at peace with my life. No regrets.
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