Hope in face of colorectal cancer?
April 27, 2015 8:05 AM Subscribe
My boyfriend has just been diagnosed with cancer of the colon. I don’t really know what I want to ask here, except to ask for some reason to hope that he’ll be okay, and to ask for advice if he’s not.
We haven’t yet had the results of his CT scan through, though we do know that because he’s only 28 year old he couldn’t get a colonoscopy for at least 8 months after the bleeding started, and he’s had stomach issues for years. The doctor who did the colonoscopy said that the tumour was 75% blocking the colon, and that the CT scan will show whether it’s spread to his lympth nodes and other parts of the body. It’s a waiting game till then, but I keep thinking that his prospects are low given how late they detected it.
I know I should just wait for the full diagnosis here, and sorry if you feel this is a waste of time. I just don’t know what to do with myself, and I’d like some advice on what I should do if this is a terminal diagnosis. He’s not sure he wants his parents there, so there’s a possibility it could just be me, and judging by my reaction to this news I highly suspect I will break down if it’s not good news and not be a good support to him. I mean like vomiting on the spot, shaking and falling apart, as I was close to that when he told me he had cancer. I don’t think he realised as I tried to hide it for his sake, and I worry he’s being a little optimistic and in denial about this next consultation, because he’s said things which indicate that he thinks it might all be okay. He also knows very little about cancer of the colon, because he’s not read any literature about it yet, so he’s in this slightly uninformed state whereas I’ve looked online and seen how dangerous it can be and have inevitably in my head wondered about what might happen if it’s really bad news.
Also, any stories of hope against odds etc, or just personal accounts of colorectal cancer, from sufferers or from supporters, would really help.
Finding it really hard to hold it together. This could not have happened to a more beautiful, lovely person. And I really am not just saying that. I’ve been pinching myself for the last eight months that my boyfriend has chosen to be with me. My friends and I call him ‘unicorn’ (behind his back) because a person like this doesn’t come along very often. I’m just completely dumbfounded that this could be happening to him, at this age, and this all feels a little unreal.
We haven’t yet had the results of his CT scan through, though we do know that because he’s only 28 year old he couldn’t get a colonoscopy for at least 8 months after the bleeding started, and he’s had stomach issues for years. The doctor who did the colonoscopy said that the tumour was 75% blocking the colon, and that the CT scan will show whether it’s spread to his lympth nodes and other parts of the body. It’s a waiting game till then, but I keep thinking that his prospects are low given how late they detected it.
I know I should just wait for the full diagnosis here, and sorry if you feel this is a waste of time. I just don’t know what to do with myself, and I’d like some advice on what I should do if this is a terminal diagnosis. He’s not sure he wants his parents there, so there’s a possibility it could just be me, and judging by my reaction to this news I highly suspect I will break down if it’s not good news and not be a good support to him. I mean like vomiting on the spot, shaking and falling apart, as I was close to that when he told me he had cancer. I don’t think he realised as I tried to hide it for his sake, and I worry he’s being a little optimistic and in denial about this next consultation, because he’s said things which indicate that he thinks it might all be okay. He also knows very little about cancer of the colon, because he’s not read any literature about it yet, so he’s in this slightly uninformed state whereas I’ve looked online and seen how dangerous it can be and have inevitably in my head wondered about what might happen if it’s really bad news.
Also, any stories of hope against odds etc, or just personal accounts of colorectal cancer, from sufferers or from supporters, would really help.
Finding it really hard to hold it together. This could not have happened to a more beautiful, lovely person. And I really am not just saying that. I’ve been pinching myself for the last eight months that my boyfriend has chosen to be with me. My friends and I call him ‘unicorn’ (behind his back) because a person like this doesn’t come along very often. I’m just completely dumbfounded that this could be happening to him, at this age, and this all feels a little unreal.
If it hasn't spread he has an extremely good chance. His youth is a mixed bag - he'll be going into treatment healthier, stronger and more fit than an older person but cancers that show up in younger people can be aggressive. I have watched a couple of family members go through treatment and while it was tough they both lived for years afterwards - one still around and the other died at 92 of something unrelated.
In terms of how you can cope and help him - find sources of support for you so you are able to be there for him. It's very hard and stressful to be the support person! A lot depends on what stage the cancer is judged to be at. It may well be worth considering a clinical trial. It's definitely worth getting a second opinion and if his treatment team is not at a good academic medical center with specific expertise in colon cancer it would be a good idea to seek treatment someplace that does meet those criteria.
I agree with the advice to do fun things, try not to find all the scary stuff out there. Take care of yourselves.
posted by leslies at 8:27 AM on April 27, 2015 [4 favorites]
In terms of how you can cope and help him - find sources of support for you so you are able to be there for him. It's very hard and stressful to be the support person! A lot depends on what stage the cancer is judged to be at. It may well be worth considering a clinical trial. It's definitely worth getting a second opinion and if his treatment team is not at a good academic medical center with specific expertise in colon cancer it would be a good idea to seek treatment someplace that does meet those criteria.
I agree with the advice to do fun things, try not to find all the scary stuff out there. Take care of yourselves.
posted by leslies at 8:27 AM on April 27, 2015 [4 favorites]
and this all feels a little unreal
That is a completely reasonable reaction, which I realize isn't hugely helpful to know, but it may be helpful to kind of embrace that - to say to yourself (or out loud!) that this is absurd and there's no way to stop it being absurd, that this is how things are right now. It will change over time - sometimes to new flavors of absurdity, but also you will eventually hit a point where most relevant information is known and decisions can actually be made.
Try not to be too superstitious about what you perceive as his inappropriate optimism - it can't make it worse and might actually be good for the immune system. Also, don't worry that one moment of weakness on your part equals "no support" ever for always permanently. You will have bad moments, and you will rally. So will he.
Practice lots of self-care, and help him do the same. There may come a point where the two of you have to be a little more honest about your thoughts and feelings, but for a few weeks it's fine to fake it until you actually know something.
You don't have to decide what to do if X, Y, or Z right now. It's okay to let it percolate.
posted by Lyn Never at 8:28 AM on April 27, 2015 [6 favorites]
That is a completely reasonable reaction, which I realize isn't hugely helpful to know, but it may be helpful to kind of embrace that - to say to yourself (or out loud!) that this is absurd and there's no way to stop it being absurd, that this is how things are right now. It will change over time - sometimes to new flavors of absurdity, but also you will eventually hit a point where most relevant information is known and decisions can actually be made.
Try not to be too superstitious about what you perceive as his inappropriate optimism - it can't make it worse and might actually be good for the immune system. Also, don't worry that one moment of weakness on your part equals "no support" ever for always permanently. You will have bad moments, and you will rally. So will he.
Practice lots of self-care, and help him do the same. There may come a point where the two of you have to be a little more honest about your thoughts and feelings, but for a few weeks it's fine to fake it until you actually know something.
You don't have to decide what to do if X, Y, or Z right now. It's okay to let it percolate.
posted by Lyn Never at 8:28 AM on April 27, 2015 [6 favorites]
Everything leslies said. Colorectal cancer is one of the most survivable cancers there is if it's caught in time with low lymph node involvement. Good luck and make sure that you have a support person/system so that you can support him through this.
posted by Pearl928 at 8:31 AM on April 27, 2015 [1 favorite]
posted by Pearl928 at 8:31 AM on April 27, 2015 [1 favorite]
My mom had colon cancer in about 1980. She had surgery and chemotherapy and today she is one of the healthiest people in our large family. Her mother also got colon cancer in her 80s then lived to be 96.
posted by cda at 8:33 AM on April 27, 2015 [1 favorite]
posted by cda at 8:33 AM on April 27, 2015 [1 favorite]
Colon cancer is pretty rare in younger people*. A close friend had it at a similar age, and the doctors were all surprised that someone so young had got it. The rarity of it meant it was hard to give a prognosis (since there wasn't much data to draw on), so bare that in mind along with the fact that any reported higher mortality rates are probably due to the majority of the patients being much older (and thus less likely to survive any major issues anyway).
In the end my friend had surgery and 6(?) months of chemo and came out 100% healthy with no relapses.
*from Wikipedia: From 2005-2009, the median age at diagnosis for cancer of the colon and rectum in the US was 69 years of age
...
Approximately 1.1% were diagnosed between 20 and 34
posted by EndsOfInvention at 8:35 AM on April 27, 2015 [1 favorite]
In the end my friend had surgery and 6(?) months of chemo and came out 100% healthy with no relapses.
*from Wikipedia: From 2005-2009, the median age at diagnosis for cancer of the colon and rectum in the US was 69 years of age
...
Approximately 1.1% were diagnosed between 20 and 34
posted by EndsOfInvention at 8:35 AM on April 27, 2015 [1 favorite]
Oh, sweetie, I'm so sorry. This is rough - and there's a rough road ahead, too. My boyfriend was diagnosed with (non-colon) cancer a few years ago; he underwent treatment and is fine now. HOWEVER, I still vividly remember the weird, nebulous waiting period... after we were sure it was cancer, BEFORE we knew anything else (odds of survival, treatment plan, "how the hell are we supposed to DO this?!", etc). It was AWFUL... like being adrift on a little lifeboat with no companions except panic and confusion. However, it was also a limited-time deal - before long, we had TONS of information, resources, and so on. So it might help to know that, no, the INSANE flesh-rending panic and awfulness you guys are feeling now will NOT last forever, or even for much longer.
One thing that helped my boyfriend during this time period was treating himself as though he had the flu (even though, at that point, he felt largely fine). He spent most nights on the sofa, wearing sweatpants, doped up on various anxiolytic substances, watching silly TV shows. It was incongruous and decadent and silly, but it really seemed to help him take the edge off. I kinda wish I'd joined him... instead, I just flailed around in my own bubble of panic and was not as supportive as I could've been.
One other thing I wish I'd done differently... I wish I'd respected that it was HIS row to hoe, and that I was his pit crew, basically. I tried to step up to the plate, but at times, I stepped up TOO much, and did not fully respect his autonomy. Be there for him, but ask him HOW he needs you to be there for him, too.
Good luck, and Memail me if you need to talk/vent/etc.
posted by julthumbscrew at 8:40 AM on April 27, 2015 [6 favorites]
One thing that helped my boyfriend during this time period was treating himself as though he had the flu (even though, at that point, he felt largely fine). He spent most nights on the sofa, wearing sweatpants, doped up on various anxiolytic substances, watching silly TV shows. It was incongruous and decadent and silly, but it really seemed to help him take the edge off. I kinda wish I'd joined him... instead, I just flailed around in my own bubble of panic and was not as supportive as I could've been.
One other thing I wish I'd done differently... I wish I'd respected that it was HIS row to hoe, and that I was his pit crew, basically. I tried to step up to the plate, but at times, I stepped up TOO much, and did not fully respect his autonomy. Be there for him, but ask him HOW he needs you to be there for him, too.
Good luck, and Memail me if you need to talk/vent/etc.
posted by julthumbscrew at 8:40 AM on April 27, 2015 [6 favorites]
I am going through treatment for a different cancer right now, and one thing my doctors have told me repeatedly is that information and statistics about survival rates that you'll find on the internet are outdated because they are all based upon past treatments (i.e., a five-year survival rate is five years out of date because it's necessarily based upon treatments that existed at minimum five years ago) . For all cancers, treatment is better right now than it has ever been.
Try to focus on the fact that your boyfriend is a person, not a statistic. I have a friend whose son survived cancer that kills 90% of children who get it. Those numbers don't mean all that much on an individual level. That said, it's okay to be scared, and to let him know you're scared. Just keep loving him and getting through each day as it comes. In time this will become the new normal for both of you, and yeah, that's a total bummer, but the anxiety and fear does ease up a bit.
posted by something something at 8:48 AM on April 27, 2015 [9 favorites]
Try to focus on the fact that your boyfriend is a person, not a statistic. I have a friend whose son survived cancer that kills 90% of children who get it. Those numbers don't mean all that much on an individual level. That said, it's okay to be scared, and to let him know you're scared. Just keep loving him and getting through each day as it comes. In time this will become the new normal for both of you, and yeah, that's a total bummer, but the anxiety and fear does ease up a bit.
posted by something something at 8:48 AM on April 27, 2015 [9 favorites]
It is really scary. Absolutely. Most especially in this stage prior to a treatment plan.
My husband was diagnosed with a rare brain cancer after essentially ignoring the symptoms for over a year. The time between his initial diagnosis and starting treatment was incredibly scary. Here are a few ways I dealt with it: Ensuring we had the best possible care (in our case, travelling farther to the regional cancer center); reminding myself that life is inherently uncertain and unfair (I could get hit by a bus any time); resisting the urge to consult Dr. Google at this point when there's nothing really concrete to research; taking care of myself first and allowing myself to feel and express fear to people who weren't my husband - and really, started building a network so that I didn't have to support him all alone.
So many good comments above. When my husband started his journey, I let myself have one complete emotional breakdown in front of him (complete with repeatedly begging him not to die). Of course it was embarrassing and I felt terrible for not being the Strong Stoic Caregiver, but it was OK - I'm human.
posted by muddgirl at 8:48 AM on April 27, 2015 [2 favorites]
My husband was diagnosed with a rare brain cancer after essentially ignoring the symptoms for over a year. The time between his initial diagnosis and starting treatment was incredibly scary. Here are a few ways I dealt with it: Ensuring we had the best possible care (in our case, travelling farther to the regional cancer center); reminding myself that life is inherently uncertain and unfair (I could get hit by a bus any time); resisting the urge to consult Dr. Google at this point when there's nothing really concrete to research; taking care of myself first and allowing myself to feel and express fear to people who weren't my husband - and really, started building a network so that I didn't have to support him all alone.
So many good comments above. When my husband started his journey, I let myself have one complete emotional breakdown in front of him (complete with repeatedly begging him not to die). Of course it was embarrassing and I felt terrible for not being the Strong Stoic Caregiver, but it was OK - I'm human.
posted by muddgirl at 8:48 AM on April 27, 2015 [2 favorites]
I worry he’s being a little optimistic and in denial... because he’s not read any literature about it yet, so he’s in this slightly uninformed state
I wouldn't necessarily try to change that. Several years ago, my dad, a perpetual optimist, had leukemia. He never read up on it or fretted about survival rates; he just let the doctors explain the treatment options each step of the way and chose whichever seemed best. Being much more analytical and prone to cynicism, I deliberately avoided delving into research articles so that I couldn't inadvertently squash his hope, and I'm so very glad I did. Statistics can't predict an individual's future. My dad survived and it doesn't matter how near a thing that was; likewise, if he'd died, no amount of "good odds" would have brought him back. Maybe that seems too fatalistic for you right now, but do consider that the placebo effect is a real thing and that feeling hopeful can only help.
posted by teremala at 8:52 AM on April 27, 2015 [2 favorites]
I wouldn't necessarily try to change that. Several years ago, my dad, a perpetual optimist, had leukemia. He never read up on it or fretted about survival rates; he just let the doctors explain the treatment options each step of the way and chose whichever seemed best. Being much more analytical and prone to cynicism, I deliberately avoided delving into research articles so that I couldn't inadvertently squash his hope, and I'm so very glad I did. Statistics can't predict an individual's future. My dad survived and it doesn't matter how near a thing that was; likewise, if he'd died, no amount of "good odds" would have brought him back. Maybe that seems too fatalistic for you right now, but do consider that the placebo effect is a real thing and that feeling hopeful can only help.
posted by teremala at 8:52 AM on April 27, 2015 [2 favorites]
He also knows very little about cancer of the colon, because he’s not read any literature about it yet, so he’s in this slightly uninformed state whereas I’ve looked online and seen how dangerous it can be and have inevitably in my head wondered about what might happen if it’s really bad news.
I'm going to share with you something I learned when my mother received a very scary diagnosis: Stop Googling. Seriously. Stop it. Don't Google anymore. Don't read message boards. Don't read WebMD. Stop reading anything about this online until you get the official test results and he has talked to his doctor about his prognosis. And then, ask the doctor for RELIABLE sources of information on the web, and read only those.
When you search for information online, for whatever reason, you are going to encounter only the worst-case scenario, and even then whatever you read might be hyperbolic. You are going to find message boards populated by people who will tell nothing but horror stories. You will find nothing positive, and it will make you crazy and scared.
My mother's (non-cancer) diagnosis was, we found online, something that only affects two people in a million. (Not true.) The best-case prognosis was one to three years. (Not true.) By all accounts, she was going to be on oxygen, with limited capability for activities, for the rest of her life. (Not true.) She had surgery, which was very successful, and she is now a healthy 70-something.
Please stop reading about possible outcomes on the internet. That way lies madness. Support his optimism, because chances are he's more right than what you've read on the web.
Also, take care of yourself in all of this too!
Wishing you both the best....
posted by mudpuppie at 9:00 AM on April 27, 2015 [25 favorites]
I'm going to share with you something I learned when my mother received a very scary diagnosis: Stop Googling. Seriously. Stop it. Don't Google anymore. Don't read message boards. Don't read WebMD. Stop reading anything about this online until you get the official test results and he has talked to his doctor about his prognosis. And then, ask the doctor for RELIABLE sources of information on the web, and read only those.
When you search for information online, for whatever reason, you are going to encounter only the worst-case scenario, and even then whatever you read might be hyperbolic. You are going to find message boards populated by people who will tell nothing but horror stories. You will find nothing positive, and it will make you crazy and scared.
My mother's (non-cancer) diagnosis was, we found online, something that only affects two people in a million. (Not true.) The best-case prognosis was one to three years. (Not true.) By all accounts, she was going to be on oxygen, with limited capability for activities, for the rest of her life. (Not true.) She had surgery, which was very successful, and she is now a healthy 70-something.
Please stop reading about possible outcomes on the internet. That way lies madness. Support his optimism, because chances are he's more right than what you've read on the web.
Also, take care of yourself in all of this too!
Wishing you both the best....
posted by mudpuppie at 9:00 AM on April 27, 2015 [25 favorites]
My wife was diagnosed with Stage IIb colon cancer in 2003 (age 44), she had a fist sized tumor. She is healthier than ever today. Colorectal cancer is very treatable. A great surgeon and a great oncologist did an incredible job for her. She was diagnosed just 6 months after we were married and between the surgery and chemo she missed 9 months of work. Be aggresive and be positive, your boyfriend likely will have a good prognosis.
posted by Grumpy old geek at 9:14 AM on April 27, 2015 [3 favorites]
posted by Grumpy old geek at 9:14 AM on April 27, 2015 [3 favorites]
Cancer is a reoccurring theme in my life.. Directly related to your situation, both my parents had colon cancer, diagnosed within a year of each other. Dad's wasn't big (arguably "pre-cancer"), mom's was larger and growing fast, blocking off a significant portion of her colon. Both had surgery to remove ~1 foot of their colon. My mom needed radiation, my dad did not. This was like ten year ago. Both did just fine, still alive and kicking today! I should add that they caught it early in both cases (ie. hadn't spread), and they fared very well despite the fact that neither of them were in particularly stellar health (ie. both overweight, dad type II diabetic, etc). My mom even went on to survive a second (unrelated) cancer a couple of years ago.
What they told us when this all went down is
1. its cancer, it sucks, its scary
2. it is one of the more treatable/survivable cancers
3. hasn't spread, and that is a good thing
4. they promised to tell us very honestly about everything that was going on and be very truthful of the prognosis. No sugar coating or hiding scary things to "protect" us.
So I will tell you this:
Its cancer, it sucks and it scary, but it does have one of the more positive rates of successful treatment compared to a lot of other cancers. You don't know yet if it spread. If it didn't, yay! If it did, well, there you go. Nothing you can do but continue to treat that. Your life for the next while is going to turn in to "We'll cross that bridge when we get to it.", and that is okay. Deal with the concretes, not the maybes. Worry about the concretes, not the maybes. You're going to have a lot of worries and concerns, but you really need to just zero in on the stuff that is actually happening and not worry about what could be. Its hard, but that is your biggest weapon right now.
Personally, I also found it hugely valuable to go full on vulcan, and just be painfully logical, rational, bordering on detached when dealing with the specifics of the situation.
I also strongly suggest you not invest time in googling this or looking it up on the internet. No faster way to feel a hell of a lot worse for absolutely no reason.
My best wishes and thoughts go to you and your partner. This sucks, and you're going to have a sucky time for the next while, but there are a lot of reasons to be optimistic right now.
posted by PuppetMcSockerson at 9:59 AM on April 27, 2015 [6 favorites]
What they told us when this all went down is
1. its cancer, it sucks, its scary
2. it is one of the more treatable/survivable cancers
3. hasn't spread, and that is a good thing
4. they promised to tell us very honestly about everything that was going on and be very truthful of the prognosis. No sugar coating or hiding scary things to "protect" us.
So I will tell you this:
Its cancer, it sucks and it scary, but it does have one of the more positive rates of successful treatment compared to a lot of other cancers. You don't know yet if it spread. If it didn't, yay! If it did, well, there you go. Nothing you can do but continue to treat that. Your life for the next while is going to turn in to "We'll cross that bridge when we get to it.", and that is okay. Deal with the concretes, not the maybes. Worry about the concretes, not the maybes. You're going to have a lot of worries and concerns, but you really need to just zero in on the stuff that is actually happening and not worry about what could be. Its hard, but that is your biggest weapon right now.
Personally, I also found it hugely valuable to go full on vulcan, and just be painfully logical, rational, bordering on detached when dealing with the specifics of the situation.
I also strongly suggest you not invest time in googling this or looking it up on the internet. No faster way to feel a hell of a lot worse for absolutely no reason.
My best wishes and thoughts go to you and your partner. This sucks, and you're going to have a sucky time for the next while, but there are a lot of reasons to be optimistic right now.
posted by PuppetMcSockerson at 9:59 AM on April 27, 2015 [6 favorites]
When I had cancer, my surgeon very wisely said at the time she promised to always call me immediately with any news, "The worst part is not knowing." And she was right. At every turn in which there was an unanswered question, I found myself becoming very emotional. And then every time the question was answered, I was back on an even keel.
It's like surfing. Try to keep a balance if you can and, for both of you, just do everything that makes your life easier and smoother. My advice: Keep breathing, drink plenty of water and stay off cancer-specific sites on the internet. We're all sending positive thoughts.
posted by janey47 at 10:12 AM on April 27, 2015 [1 favorite]
It's like surfing. Try to keep a balance if you can and, for both of you, just do everything that makes your life easier and smoother. My advice: Keep breathing, drink plenty of water and stay off cancer-specific sites on the internet. We're all sending positive thoughts.
posted by janey47 at 10:12 AM on April 27, 2015 [1 favorite]
I'm sorry your sweetie is ill. Call the doctor's office and/or the hospital to see if there are cancer support groups for patients and/or family. It's a lot to process, and getting some extra support helps. Or ask your family/friends to help with listening and hugs. Sending a hug from Maine.
posted by theora55 at 11:36 AM on April 27, 2015
posted by theora55 at 11:36 AM on April 27, 2015
Finding it really hard to hold it together.
The scariest thing we all deal with is the unknown. I am going to give you the opposite advice on googling. I just entered the two words cancer support. You know the answer. It comes back in less than a second. I am not entering a result here because it is your need not mine at this time. You reached out for support here. Reach out for ongoing support. I will tell you I attended a support group for my second major cancer - prostate. The support was good for me. You will end up connected with lots of good people who will reveal the path you will have to live through. You do not know that path now (intensifying that fear). This stress will affect everything; your relationship, your world view, your work, everything. Please reach out and encourage your boyfriend to do the same for his journey.
My story may be encouraging. My doctor kept treating me with antacid meds for months and the gastroenterologist started the same way. This went on for many months. I had periods of bleeding and constant stomach pain every time I ate and nausea when hungry . I was groggy on the gurney after my colonoscopy listening to the doctor ordering a room for me and planning a surgery for that night. He came over to tell me this. I looked at him and asked if we could schedule for a few days later. I didn't tell him I wanted to be available for a court appearance as a CASA volunteer for two kids I advocated for in their court appearances. The doctors look more than his words convinced me to stay. His look gave the impression of thinking "are you nuts?". He said "I don't think that would be a good idea". I stayed. After the surgery they told me I had a grapefruit sized tumor. Amazingly it had not spread. I often wonder how far from that I was. Still, it was 18 years ago and no return. Lucky me.
The truth for you to know is that caught before spreading colon cancers have one of the best survival rates. And even if spreading beyond the colon can be cured. Mine was colon cancer. My nephew had colo-rectal cancer at 26. He survived also. Colo-rectal can be more challenging because of complications. My nephew leads a full normal life with a good job. He was diagnosed a week before me. I was really scared about me as I talked with family about his cancer. I could not say a word about my own fear. It was an uncomfortable place to be in. You me and your boyfriend know that place.
Your fear is stress for you. Holding it in will give the stress power and may lead to you making a bad decision. One like leaving him because of your fear of losing him. It will at minimum impact your ability to be there for him. I recommend that at the right moment you share with him what you feel. It won't feel comfortable to bring it up but it will after you talk. Then let him know that you want to be there for him. After all he is looking at possibly not just losing you but life itself. Rent some really funny movies to share. Laughter is the best medicine. Does he know he's the unicorn? Guys don't like unicorns. But they do like being special.
posted by Jim_Jam at 12:24 PM on April 27, 2015 [3 favorites]
It's really scary to go through diagnosis, and it's totally okay to cry. For yourself, for him, for the unfairness of cancer jerking you around. I say that as someone who had cancer of a different type, and a LOT of cancer in my family.
That said, colon cancer is very, very treatable -- even if it has spread. IANAD and don't want to speak out of turn, but the likelihood is that you're NOT staring down a terminal diagnosis here.
Want a few more anecdotes? I know two men who were diagnosed with stage 4 colon cancer who are alive and kicking and leading normal lives more than 5 years later, albeit with some dietary modifications resulting from having a much shorter colon. But no permanent colostomy or anything like that.
posted by desuetude at 1:32 PM on April 27, 2015 [1 favorite]
That said, colon cancer is very, very treatable -- even if it has spread. IANAD and don't want to speak out of turn, but the likelihood is that you're NOT staring down a terminal diagnosis here.
Want a few more anecdotes? I know two men who were diagnosed with stage 4 colon cancer who are alive and kicking and leading normal lives more than 5 years later, albeit with some dietary modifications resulting from having a much shorter colon. But no permanent colostomy or anything like that.
posted by desuetude at 1:32 PM on April 27, 2015 [1 favorite]
The roof falls in. Familiar words take on different meanings. Life is sweet, and unfair. In my case the cancer was among the more dreadful versions, with a post-treatment survival rate of about forty-something months, not counting the final and emotionally numbing stage, palliative care.
Mrs. Mule and I both did a lot of internet research during the runups to chemo and stem-cell transplant procedures, trying to get some sense of how it works, what my odds were, how to navigate. At some point I had to simply give myself over to the treatments. The signal effect here is that it's often harder on the caregiver than it is on the victim of the cancer.
You are the caregiver, and I don't blame you for not feeling up to the task. This is a normal reaction. Don't let the internet dictate what you do. It's useful as a research tool. But your place in this equation is to be aware of your boyfriend's situation, yet let him set his own emotional tone. He may need you to help him administer his meds, and drive him to and from treatment sessions. He will benefit from your help in planning and preparing meals. You are important in this most frightening of emotional transactions. Please talk to friends. Have time to eat well and rest. Work with his friends and relatives, when necessary, to give you some relief. If you are his primary caregiver you can help keep track of any in-home treatment people (I had a nurse come to my house twice a week for four months to help service my PICC line).
Many cancer treatment facilities have social workers who are adept at briefing and supporting a patient's caregivers. Take advantage of this service if it's available. You may have the opportunity to meet with other caregivers, who face challenges similar to yours. For Mrs Mule, this was a significant issue.
Do not underestimate the value of positive thinking, but if things become grim, don't get caught up in denial. The doctors will move from one decision-box to the next, so move with them, and face what comes knowing what options are open to you. This is a lot like riding a roller coaster.
By the way, my main course of treatment was ten years ago this last December, and, to the delight of all my doctors, I am still in remission. I spent the first two years after the transplant waiting for the long chains to fuck up, but they didn't. I gradually gave way to the notion that geriatric issues will probably kill before multiple myeloma does. At some point your SO will have faced his mortality, and then he will have to back away from the edge of the pit.
Both of you are young to have to go through this sort of reality check, but I promise you that this aspect of it is survivable. I wish you both well.
posted by mule98J at 8:42 PM on April 27, 2015 [3 favorites]
Mrs. Mule and I both did a lot of internet research during the runups to chemo and stem-cell transplant procedures, trying to get some sense of how it works, what my odds were, how to navigate. At some point I had to simply give myself over to the treatments. The signal effect here is that it's often harder on the caregiver than it is on the victim of the cancer.
You are the caregiver, and I don't blame you for not feeling up to the task. This is a normal reaction. Don't let the internet dictate what you do. It's useful as a research tool. But your place in this equation is to be aware of your boyfriend's situation, yet let him set his own emotional tone. He may need you to help him administer his meds, and drive him to and from treatment sessions. He will benefit from your help in planning and preparing meals. You are important in this most frightening of emotional transactions. Please talk to friends. Have time to eat well and rest. Work with his friends and relatives, when necessary, to give you some relief. If you are his primary caregiver you can help keep track of any in-home treatment people (I had a nurse come to my house twice a week for four months to help service my PICC line).
Many cancer treatment facilities have social workers who are adept at briefing and supporting a patient's caregivers. Take advantage of this service if it's available. You may have the opportunity to meet with other caregivers, who face challenges similar to yours. For Mrs Mule, this was a significant issue.
Do not underestimate the value of positive thinking, but if things become grim, don't get caught up in denial. The doctors will move from one decision-box to the next, so move with them, and face what comes knowing what options are open to you. This is a lot like riding a roller coaster.
By the way, my main course of treatment was ten years ago this last December, and, to the delight of all my doctors, I am still in remission. I spent the first two years after the transplant waiting for the long chains to fuck up, but they didn't. I gradually gave way to the notion that geriatric issues will probably kill before multiple myeloma does. At some point your SO will have faced his mortality, and then he will have to back away from the edge of the pit.
Both of you are young to have to go through this sort of reality check, but I promise you that this aspect of it is survivable. I wish you both well.
posted by mule98J at 8:42 PM on April 27, 2015 [3 favorites]
Response by poster: Thanks guys. This has all been SO helpful. Feeling so much more optimistic, and not guilty about taking some care of myself. I've been rather martyr-like in giving over every piece of mental and physical energy to this and I need to stop before I get ill and take a pragmatic view, for myself and him. You're so right about the googling, and about each person not being a statistic. Jim_Jam's response actually made me cry it was so what I wanted to hear. I'll remember to look back at this whenever things feel bad.
Thanks again.
posted by starstarstar at 7:13 AM on April 28, 2015 [3 favorites]
Thanks again.
posted by starstarstar at 7:13 AM on April 28, 2015 [3 favorites]
This thread is closed to new comments.
posted by ThatCanadianGirl at 8:08 AM on April 27, 2015 [13 favorites]