A rant about cancer

[Helvetios]

I'm trying to move on with my life after cancer. I have a biopsy tomorrow morning because I think it's returned. Expecting it to come back as cancerous, but not yet sure of what's next after that.

It just won't leave me alone. That's my main complaint about this whole mess. I was diagnosed with melanoma in January and since then I've been thinking about it nonstop. I'd lie awake at night almost believing that I could feel the tumours growing. After surgery I was terrified they'd left something behind, and I went back to my second surgeon to ask if he could possibly take out any more tissue before it became cancerous (he couldn't). Chemo was chaotic, stressful, and over too soon because my body couldn't make it through more than a week of treatment. I developed anxiety symptoms whenever something went awry; I treated every new symptom as life-threatening until proven otherwise. I was never sure how far to plan my life in advance -- should I sign up for courses for the next term, should I decline this leadership position, do I have enough energy to go out tonight, will I have to sleep it off tomorrow if I do go out. My relationships with others became uncertain. I wasn't sure who to tell or how much to share, so I just told everyone everything and let them deal with the discomfort. I broke up with my boyfriend after starting school again. My crippling depression disappeared when I was diagnosed; I shut down emotionally and never really came back.

Months later, it's still the same.

I still have trouble making plans and I delay commitment for as long as possible. A simple outing feels like a big deal to me, and often I don't end up leaving the house at all. Added to this, I'm still dealing with side effects from chemo even though I was only on it for a week, and that was seven months ago. I'm forgetful and often shy. I'm so tired. No amount of sleep is ever enough and fatigue comes at the oddest times. I completely shut down for days after my last oncology followup, unable to concentrate and overwhelmed by the ideas of interacting with people and even going outside. I still dream that someone or something is trying to kill me.

Some days I'm a shut-in, other days I'm out as much as possible and involved as much as I can be. I'm on the planning committees for two conferences in 2016, I run a student group at the university, I'm the vice president of another organization, I'm on a competitive synthetic biology team, I'm tutoring a couple of my friends in their science courses, and somehow I'm still unable to take a full course load because even four courses is exhausting. I'm supposed to be on a work term this coming summer, but now I don't know if I'll be able to do it now. There's a lump in my neck and my oncologist's body language said it's a tumour. I'm expecting to be in treatment again this winter, but planning as if I won't. It's a strange duality.

It took me almost a full year to find another young melanoma patient in my city. The other women in my 'younger adult' cancer support group have children my age. There's a newer drug available now. I want to try it, and I hate chemo but this is how we destroy the beast. In a week, chemo managed to do quite a bit of damage. I never used to get hangovers and now I do; I'm also now allergic to shellfish, and for a while after treatment I couldn't drink alcohol at all. My circulation is worse than before. I get cold feet, and it takes a long time for me to get warm at night.

-----

This is why I reject the promoted message that cancer patients are 'warriors'. It glorifies a war that nobody wins. I'm not a warrior, I'm just a 21 year old who is trying to understand what's happening and why it had to be so soon. I'm fighting cancer, sure, but what does that mean? To me it means internet, gaming, sleeping a lot, talking to a lot of medical professionals and old people, becoming a bit of a hypochondriac, making absolutely horrible jokes about this disease, and sometimes having an IV or catheter in my arm with a clear liquid dripping down into my heart. Sometimes there's surgery involved, but I don't feel much pain and I don't even remember anything once they knock me out. Other times the scans don't show any bright spots and the blood tests are normal. Then my life is a waiting game in which I fill the hours and years with other activities to move forward as fast as I can because I might be blindsided at any time.

So call me whatever you want, but this is a different kind of battle. This is not a foreign invader, this is part of the body rebelling against itself. There is no safe place to retreat to because the disease always comes with you, and as long as it's there it is trying to kill you. And until you do die or are 'cured' (although the doctors can never be sure if you'll be okay or not), you are branded a warrior who must continue to 'fight' (read: avoid death) at steep personal cost. Some patients are pressured into continuing treatment beyond the point where it would benefit them because friends and family think they must.

The fight ends when you are dead. You win by not dying of cancer. Winning just means you don't have to fight anymore.

 

[Sunstone]

That strikes me as quite helpful in understanding your perspective and where you're coming from, Helve, And it's beautifully and powerfully written, too.

 

[Laika]

I have to second sunstone in saying how beautifully written your OP is Helv. its worth keeping a journal just to read it.

I think at 21 years old, the idea of death was once very far away but has now become an ever present factor. I hope that doesn't sound patronising, but I imagine you'll be sitting with friends your age and an uneasy gap will have opened up because they haven't shared your experiences. they still treat death as something that happens to someone else, only to feel unnerved that it's the person sitting next to them. I would say that the way you feel is actually a good thing as your showing an emotional response to the situation. I also agree with the whole warrior myth of fighting cancer. I'm not sure whether you've said your depression has gone or got worse. either way, you've been through a shock and it will upset your priorities and what you want to do with you life. being confused about what to do sounds healthy and isn't something to be ashamed of. its strange how people expect you to know what you are doing, where your places is in the world, what direction your heading in, when all the "sign posts" start to become meaningless. where once there was a mountain range to climb, now it seems as if it is open ocean and each mountain range has become shallow waves in the tide. they all feel dwarfed by your experiences. what was once solid rock now runs like water through your fingers.

On the subject of whether or not the cancer comes back, I won't pretend I will fully understand what you are going through. But with depression and the periods when I felt suicidal, there was a realization that death is not a choice. it didn't matter because it wasn't a question of "if" but "when". its sort of "there" and always will be, an unwelcome passenger on all future journeys uncomfortably whispering that the destination is the same for everyone. I'm still only 26, but it wasn't until my birthday this year that I realised I was actually going to survive depression and live into adulthood. that might sound familiar. There are moments when I feel like I am in my forties or older, and yet somewhere in my head I can feel the "young" me trying to get out. yet I am not the person I was when I was 18 and started down the road with depression. trying to carry on as if nothing happened, following the path I was expected to go before feels "wrong" somehow. it isn't our fault and the fact death is a taboo in western societies is a major failing because of how central it is to valuing ourselves and our time. awareness of it can give us peace. the reason it is hard to talk about it, is because nobody likes being the bearer of bad news and we're all quietly afraid that someone will "shoot the messenger" as opening up about bad experiences can be taken as anti-social. it reality, it is only by those who feel insecure and are trying to hide.

Maybe the struggle isn't with cancer, but with the denial and the realisation how shallow "normality" is as a way to decide how to live your life. there is a strange blueprint we are all expected to follow and fighting it starts to feel right even as others stand by uncomprehending thinking your crazy because you don't share their illusions. you doubt yourself and I'd make no secret that it can be very disruptive, nor is it easy. But each step forward gets easier because the mountain range is behind you, and the open ocean is in front of you. Perhaps I look forwards and wonder, am I afraid of drowning or am I learning to swim? metaphors say it better than trying to plot out the "what ifs", both in the past and the future, which don't make sense any more.

 

[wizanda]

We've known how to cure cancer for years:

• In 1952 they learned that apricot kernels contain vitamin b17, which is a natural form of cyanide, that will attack foreign cells to the body.
• In 1974 in laboratory experiments they found THC will kill both cancer and tumors.
• A vegan diet will alkalize the body, which helps stop cancer forming and growing (1931).
• Soursop (1976), even the cancer research site says 'it kills certain cancer cells''; yet they can't be bothered to do research into something that can be free.

The Truth About Cancer - Channel

The whole series is available online for free.

 

[lewisnotmiller]

Hey Helvy...sorry i don't really know what to say, so I'm just hear to offer an ear and all the virtual hugs you want.

 

[allfoak]

http://www.drmorsesherbalhealthclub.com/

https://www.youtube.com/user/robertmorsend

 

[Quetzal]

Thank you for writing this. I am really not very good at these sort of things, but I am hoping for the best and that you find peace.

 

[Helvetios]

Not really sure what to say to this, I had no idea you had cancer.
I find your perspective interesting and wish you the best of luck.
My inbox is there if you ever feel like talking w/ someone.

There was a thing on the news about Jimmy Carter getting some new cancer treatment, which I think was melanoma related. Not sure if that might be of interest to you.

Good luck helvy

Thanks, I may take you up on that. It's a difficult topic to introduce. Re: Carter, I heard the news. His melanoma was worse than mine (I'm stage 3 so it's in my lymph fluid now, he was stage 4 with brain and liver tumours which is pretty bad), and he was treated with one of the newer drugs, Keytruda. Good to know it works! I'm looking at Yervoy myself if I ever need chemo again, since not all drugs are approved for stage 3 (so some of them aren't options for me). I've also been to a few seminars detailing up-and-coming research, and there's stuff you've never heard of that will revolutionise drug delivery etc. Here's hoping it translates into real therapies in the near future.

 

[Robert.Evans]

I'm trying to move on with my life after cancer. I have a biopsy tomorrow morning because I think it's returned. Expecting it to come back as cancerous, but not yet sure of what's next after that.

It just won't leave me alone. That's my main complaint about this whole mess. I was diagnosed with melanoma in January and since then I've been thinking about it nonstop. I'd lie awake at night almost believing that I could feel the tumours growing. After surgery I was terrified they'd left something behind, and I went back to my second surgeon to ask if he could possibly take out any more tissue before it became cancerous (he couldn't). Chemo was chaotic, stressful, and over too soon because my body couldn't make it through more than a week of treatment. I developed anxiety symptoms whenever something went awry; I treated every new symptom as life-threatening until proven otherwise. I was never sure how far to plan my life in advance -- should I sign up for courses for the next term, should I decline this leadership position, do I have enough energy to go out tonight, will I have to sleep it off tomorrow if I do go out. My relationships with others became uncertain. I wasn't sure who to tell or how much to share, so I just told everyone everything and let them deal with the discomfort. I broke up with my boyfriend after starting school again. My crippling depression disappeared when I was diagnosed; I shut down emotionally and never really came back.

Months later, it's still the same.

I still have trouble making plans and I delay commitment for as long as possible. A simple outing feels like a big deal to me, and often I don't end up leaving the house at all. Added to this, I'm still dealing with side effects from chemo even though I was only on it for a week, and that was seven months ago. I'm forgetful and often shy. I'm so tired. No amount of sleep is ever enough and fatigue comes at the oddest times. I completely shut down for days after my last oncology followup, unable to concentrate and overwhelmed by the ideas of interacting with people and even going outside. I still dream that someone or something is trying to kill me.

Some days I'm a shut-in, other days I'm out as much as possible and involved as much as I can be. I'm on the planning committees for two conferences in 2016, I run a student group at the university, I'm the vice president of another organization, I'm on a competitive synthetic biology team, I'm tutoring a couple of my friends in their science courses, and somehow I'm still unable to take a full course load because even four courses is exhausting. I'm supposed to be on a work term this coming summer, but now I don't know if I'll be able to do it now. There's a lump in my neck and my oncologist's body language said it's a tumour. I'm expecting to be in treatment again this winter, but planning as if I won't. It's a strange duality.

It took me almost a full year to find another young melanoma patient in my city. The other women in my 'younger adult' cancer support group have children my age. There's a newer drug available now. I want to try it, and I hate chemo but this is how we destroy the beast. In a week, chemo managed to do quite a bit of damage. I never used to get hangovers and now I do; I'm also now allergic to shellfish, and for a while after treatment I couldn't drink alcohol at all. My circulation is worse than before. I get cold feet, and it takes a long time for me to get warm at night.

-----

This is why I reject the promoted message that cancer patients are 'warriors'. It glorifies a war that nobody wins. I'm not a warrior, I'm just a 21 year old who is trying to understand what's happening and why it had to be so soon. I'm fighting cancer, sure, but what does that mean? To me it means internet, gaming, sleeping a lot, talking to a lot of medical professionals and old people, becoming a bit of a hypochondriac, making absolutely horrible jokes about this disease, and sometimes having an IV or catheter in my arm with a clear liquid dripping down into my heart. Sometimes there's surgery involved, but I don't feel much pain and I don't even remember anything once they knock me out. Other times the scans don't show any bright spots and the blood tests are normal. Then my life is a waiting game in which I fill the hours and years with other activities to move forward as fast as I can because I might be blindsided at any time.

So call me whatever you want, but this is a different kind of battle. This is not a foreign invader, this is part of the body rebelling against itself. There is no safe place to retreat to because the disease always comes with you, and as long as it's there it is trying to kill you. And until you do die or are 'cured' (although the doctors can never be sure if you'll be okay or not), you are branded a warrior who must continue to 'fight' (read: avoid death) at steep personal cost. Some patients are pressured into continuing treatment beyond the point where it would benefit them because friends and family think they must.

The fight ends when you are dead. You win by not dying of cancer. Winning just means you don't have to fight anymore.

Hard to respond to this. This would be difficult for anyone, but 21 is young.
I have to ask though, as this is a religious forum, do you believe in God and if so, how does this square with your cancer?
You don't have to answer this.

 

[allfoak]

There is plenty of hope.
Your problem is fixable.

 

[Debater Slayer]

My thoughts are with you, my friend.

 

[Revoltingest]

 

[Sunstone]

I can only imagine how lonely the struggle must be.

 

[Helvetios]

Hard to respond to this. This would be difficult for anyone, but 21 is young.
I have to ask though, as this is a religious forum, do you believe in God and if so, how does this square with your cancer?
You don't have to answer this.

I was raised a young-earth creationist, anti-lgbt evangelical Christian. I am now an atheist who finds beauty in primarily Germanic and Slavic paganism. My lack of belief was never a source of personal conflict after diagnosis; I accepted it without worrying about purpose and guilt and what I was 'supposed' to learn from this. I am still just as confident in my beliefs as I was before diagnosis.

Cancer is a natural phenomenon that happens to living things like us. It is a shocking, painful, deeply personal disease. It is not something that can be avoided completely, contrary to what a lot of people want to believe. It is not the doing of a god who enjoys watching a person endure a drawn out, traumatic, life-threatening, incurable medical condition for the purpose of punishment, a teachable moment, or displaying the god's own glory in a narcissistic display at the expense of powerless human beings. It is my personal belief that if there is a god like this then we must surely be in hell already.

 

[Helvetios]

Please keep in mind that this criticism is aimed at religious beliefs resembling the ones I grew up with, and is not meant to cover all religious / spiritual beliefs we see here on RF.

 

[Helvetios]

There is plenty of hope.
Your problem is fixable.

Thanks for the link, but this isn't a reliable source at all. It isn't even about cancer. And there are more than 100 types of cancer, with varying causes and contributing factors such as viruses, radiation, chemicals, anything that lowers the immune system, etc. They are extremely different in their behaviour and weaknesses, and must be treated accordingly. 'Fruits, berries and melons' doesn't make the cut there. Don't get me wrong, I still use alternative medicine, but I look up the evidence myself and I have the science background to distinguish bad data from good data. Green tea, ginger, miso, mushrooms, black cumin seed oil, and other substances all have active ingredients that can make a difference in some way. Simple things such as staying properly hydrated and eating a variety of healthy foods can prevent me from losing so much weight and give my body more fuel with which to fight cancer (and incidentally, I've come across studies that show more favourable outcomes for patients with better nutrition). These are supplemental measures, not a first line treatment.

Aside from that... melanoma is a tricky beast, it can be clever and very aggressive. As recently as five years ago, a diagnosis of stage 4 was basically a death sentence. Since the newer immunotherapy drugs have come out (and the highly publicized viral therapy T-VEC), that is no longer as true as it was. The potency of these therapies outstrips whatever Robert Morse is promoting.

 

[allfoak]

Thanks for the link, but this isn't a reliable source at all. It isn't even about cancer. And there are more than 100 types of cancer, with varying causes and contributing factors such as viruses, radiation, chemicals, anything that lowers the immune system, etc. They are extremely different in their behaviour and weaknesses, and must be treated accordingly. 'Fruits, berries and melons' doesn't make the cut there. Don't get me wrong, I still use alternative medicine, but I look up the evidence myself and I have the science background to distinguish bad data from good data. Green tea, ginger, miso, mushrooms, black cumin seed oil, and other substances all have active ingredients that can make a difference in some way. Simple things such as staying properly hydrated and eating a variety of healthy foods can prevent me from losing so much weight and give my body more fuel with which to fight cancer (and incidentally, I've come across studies that show more favourable outcomes for patients with better nutrition). These are supplemental measures, not a first line treatment.

Aside from that... melanoma is a tricky beast, it can be clever and very aggressive. As recently as five years ago, a diagnosis of stage 4 was basically a death sentence. Since the newer immunotherapy drugs have come out (and the highly publicized viral therapy T-VEC), that is no longer as true as it was. The potency of these therapies outstrips whatever Robert Morse is promoting.

Sorry

 

[Helvetios]

Sorry

No problem, I appreciate that you want to help and that you shared resources with me. At the very least it's a good reminder that I need more fruit in my diet. Anecdotal stories can be exciting and intriguing, but if more rigorous study isn't done to find out the exact reasons behind a miraculous outcome, then no one knows for sure even though the person may have recovered anyway.

 

[Helvetios]

We've known how to cure cancer for years:

• In 1952 they learned that apricot kernels contain vitamin b17, which is a natural form of cyanide, that will attack foreign cells to the body.
• In 1974 in laboratory experiments they found THC will kill both cancer and tumors.
• A vegan diet will alkalize the body, which helps stop cancer forming and growing (1931).
• Soursop (1976), even the cancer research site says 'it kills certain cancer cells''; yet they can't be bothered to do research into something that can be free.

The Truth About Cancer - Channel

The whole series is available online for free.

First, there is no 'we'. Second, this statement is patently untrue. I'm a biology student looking to go into cancer research and after my own diagnosis I started reading a lot of the literature on it. Based on that and what I've learned from talking to cancer researchers and my own medical team, I've had to conclude that the problem of cancer is horrendously complicated. As I said in my reply to allfoak, the treatment is also highly dependent on which cancer you're looking at. And even more -- for instance, melanoma has four main subtypes with different behaviours, and mine is a rare form of one of those with its own atypical features. Presence or absence of certain features, such as key mutations in the DNA, levels of certain enzymes in the blood, or oxygen content around the cancerous cells, are also important to consider when thinking about treatment.

• There is no such thing as vitamin B17; the substance is called amygdalin, and a partly synthetic form called laetrile also exists. There is no good evidence to indicate it has any anti-cancer effects. Its first use as a cancer treatment was in 1845 in Russia; it made its way to the US in the 1920s. Laetrile was widely promoted as an alternative cancer treatment in the 1970s despite the continued lack of evidence. For instance, an animal study showed that amygdalin slowed tumour growth in animals, but scientists were unable to reproduce the experiment and get the same results; the evidence generally shows no anti-tumour effects. As for amygdalin releasing cyanide when metabolized by certain enzymes, this absolutely does kill cancer cells in a petri dish. So does a handgun. Cyanide does not distinguish between cancerous and healthy cells.

• The evidence for cannabinoids (not only THC) and supposed anti-cancer effects is more promising, although there are large gaps in the research. Cannabinoids are useful in providing relief from treatment-related side effects such as pain, nausea, anxiety, insomnia, etc. The cancer centre I go to has a dispensary at the pharmacy, and I have had other patients tell me that it is more effective than prescription drugs and has no unwanted side effects. Still, research is ongoing and I would not use this as a first line treatment as it stands now. I find it useful as a supplementary measure.

• The rationale behind the alkaline diet is that cancer cells thrive in a slightly acidic environment in laboratory conditions, so raising the human body's pH should therefore discourage them from growing. The catch is that the human body is very good at regulating its pH. If not for numerous buffers and measures fine-tuned to a pH the body likes to maintain, even a glass of orange juice would kill you. For example, blood pH does change slightly after eating very acidic or alkaline foods, but this should stay within the normal range (slightly alkaline) and any deviation is corrected over time.

• Soursop fruit and graviola tree leaves (same plant) have been used in herbal medicine to counteract fever, parasitic infection, stomach problems, and several other ailments. Claims about its anti-cancer activity have been the most widely circulated. One 1997 study suggests that it kills breast cancer cells in a petri dish faster than certain chemotherapy drugs. Without more evidence necessary to do clinical trials in humans, there is essentially no evidence to support the claim, even with that one study. Also, some studies have indicated that eating soursop could potentially lead to movement disorders similar to Parkinson's. A tea made from the leaves is also associated with neurotoxicity and should be avoided.

I might still watch the series, but I wouldn't recommend that anyone take it seriously. Thanks for the link.

 

[Quagmire]

Hi Helvetios,

I'm guessing I'm not showing you anything here that you don't already know about, but just in case: http://www.cancer.gov/about-cancer/treatment/cam/patient/vitamin-c-pdq

https://www.google.com/webhp?sourceid=chrome-instant&ion=1&espv=2&ie=UTF-8#q=vitamin+C+and+cancer