Medical uncertainty; your personal tips requested
December 30, 2023 3:08 PM Subscribe
I'm currently awaiting diagnosis for a serious illness that is as yet unclear, but believed to be fast-developing lung cancer. I'd love to hear your coping strategies.
I'm a bowel cancer survivor and my annual scan last month detected a tumour in my lung. It is atypical for metastatis and further testing suggests that it is most likely primary lung cancer. I have had various tests that have proved inconclusive and am currently awaiting the results of a lung needle biopsy. The process has been going on for six weeks now and I am becoming more and more stressed as the wait drags on and I can't even get clarity on when results will be back, for example.
I got through my bowel cancer diagnosis and treatment a few years ago with what was apparently an uncommonly high level of acceptance and low level of stress. I'm really struggling to find that again right now, especially with everything else that's going on in my life. What got you through this period? (I should add that I'm a past master of meditation and mindfulness; I've got that aspect covered.) I seem to be naturally aware of my privilege to an abnormal degree - in the history of the world, there's never been a better time or place to have lung cancer! But I just feel 'done' with life and I need to find that enjoyment again. I have young-ish children. Please help.
Perhaps unusually, I don't have a lot of trouble with the fact of the tumour itself. It's all the people I have to deal with, some of whom are really not very nice, that makes me feel stressed and powerless.
NB counselling doesn't appear to be an option right now as all services are still overwhelmed post-pandemic, plus I don't want someone to listen while I talk about how down I feel - I want tips on getting myself out of this hole.
I'm a bowel cancer survivor and my annual scan last month detected a tumour in my lung. It is atypical for metastatis and further testing suggests that it is most likely primary lung cancer. I have had various tests that have proved inconclusive and am currently awaiting the results of a lung needle biopsy. The process has been going on for six weeks now and I am becoming more and more stressed as the wait drags on and I can't even get clarity on when results will be back, for example.
I got through my bowel cancer diagnosis and treatment a few years ago with what was apparently an uncommonly high level of acceptance and low level of stress. I'm really struggling to find that again right now, especially with everything else that's going on in my life. What got you through this period? (I should add that I'm a past master of meditation and mindfulness; I've got that aspect covered.) I seem to be naturally aware of my privilege to an abnormal degree - in the history of the world, there's never been a better time or place to have lung cancer! But I just feel 'done' with life and I need to find that enjoyment again. I have young-ish children. Please help.
Perhaps unusually, I don't have a lot of trouble with the fact of the tumour itself. It's all the people I have to deal with, some of whom are really not very nice, that makes me feel stressed and powerless.
NB counselling doesn't appear to be an option right now as all services are still overwhelmed post-pandemic, plus I don't want someone to listen while I talk about how down I feel - I want tips on getting myself out of this hole.
I have a cancer that's considered incurable so I'm never out of the woods. That means I have a lot of experience dealing with this shit. My cancer is mostly tracked through blood tests, and my heart is in my throat every time - which is at least monthly.
Six weeks is a very long time to wait, and it's really hard to come up with good solutions.
Are the people you don't want to deal with friends/family or medical personnel? If friends/family, I really limit saying anything to people now. I only give news to people when I'm confident they will answer in a way that doesn't make me feel worse. People who say "I'm sorry" never get news from me anymore. I thought there was something wrong with me for hating that so much, but then I heard a patient on a podcast who hated it too. She said it took all her power away. I'd suggest being aware of the comments that upset you and just don't tell those people anything if it's possible - recognizing it isn't always.
As far as counseling, if you get to a point where it's a possibility, I've been in therapy this whole time, and for me, it doesn't feel like someone just listening to how down I feel. I get different perspectives from my therapist, and he said what might be the most useful thing anyone has said to me about this: You don't know what's going to happen. That might seem obvious, but at the time, I was getting stressed about statistics and my future - and he was right that I simply have no idea. I'm on a support board for my cancer, and I know a lot of people whose doctors told them they had two years to live (that was the estimated life expectancy in the 90s) and who are still here literally decades later.
I would like to strike the word "journey" from the English language.
Re therapy, a lot of whether it helps is based on a personality match. So you may try a therapist who doesn't work for you at all. I would suggest not taking that as meaning therapy in itself is useless. To me, the big advantage of a therapist is it is literally his job to listen to whatever I throw at him. I don't have to feel like I need to protect him from the bad stuff, which I definitely feel with my adult children and most of my friends.
Reading depends on what you're up for. If you want distraction, go for that. If you want to feel like you can do something - that's super personal as to what works for you. There's a lot of crap out there. I liked Radical Remission.
If you would like to try an online support group, I've been pretty happy with Smart Patients - they have support groups for many different conditions, and we definitely hear from people who are being evaluated and not diagnosed yet. There would be people on that site who've had the same tests you're having and would be able to share their experiences. Also, just searching the site might give you some more info. Like everything cancer, it's not going to be for everyone, but overall, I've found it more helpful than not.
Good luck with this. It's just super hard, and there's no getting around that.
posted by FencingGal at 4:05 PM on December 30, 2023 [20 favorites]
Six weeks is a very long time to wait, and it's really hard to come up with good solutions.
Are the people you don't want to deal with friends/family or medical personnel? If friends/family, I really limit saying anything to people now. I only give news to people when I'm confident they will answer in a way that doesn't make me feel worse. People who say "I'm sorry" never get news from me anymore. I thought there was something wrong with me for hating that so much, but then I heard a patient on a podcast who hated it too. She said it took all her power away. I'd suggest being aware of the comments that upset you and just don't tell those people anything if it's possible - recognizing it isn't always.
As far as counseling, if you get to a point where it's a possibility, I've been in therapy this whole time, and for me, it doesn't feel like someone just listening to how down I feel. I get different perspectives from my therapist, and he said what might be the most useful thing anyone has said to me about this: You don't know what's going to happen. That might seem obvious, but at the time, I was getting stressed about statistics and my future - and he was right that I simply have no idea. I'm on a support board for my cancer, and I know a lot of people whose doctors told them they had two years to live (that was the estimated life expectancy in the 90s) and who are still here literally decades later.
I would like to strike the word "journey" from the English language.
Re therapy, a lot of whether it helps is based on a personality match. So you may try a therapist who doesn't work for you at all. I would suggest not taking that as meaning therapy in itself is useless. To me, the big advantage of a therapist is it is literally his job to listen to whatever I throw at him. I don't have to feel like I need to protect him from the bad stuff, which I definitely feel with my adult children and most of my friends.
Reading depends on what you're up for. If you want distraction, go for that. If you want to feel like you can do something - that's super personal as to what works for you. There's a lot of crap out there. I liked Radical Remission.
If you would like to try an online support group, I've been pretty happy with Smart Patients - they have support groups for many different conditions, and we definitely hear from people who are being evaluated and not diagnosed yet. There would be people on that site who've had the same tests you're having and would be able to share their experiences. Also, just searching the site might give you some more info. Like everything cancer, it's not going to be for everyone, but overall, I've found it more helpful than not.
Good luck with this. It's just super hard, and there's no getting around that.
posted by FencingGal at 4:05 PM on December 30, 2023 [20 favorites]
Thank you FencingGal for the mention of Smart Patients. I just spent a bit of time on their web site and expect to spend lots more time there.
posted by baegucb at 6:55 PM on December 30, 2023 [4 favorites]
posted by baegucb at 6:55 PM on December 30, 2023 [4 favorites]
I’m sorry that you’re struggling. I was an absolute mess the one time I had to deal with something vaguely similar. I had to wait for an appointment to get more info so one thing I could do to reduce the helpless feeling was call everyday to see if there were any cancellations so I could get my appointment sooner. Can you call every day about the status of your results? I know that might sound obnoxious but I literally said to the receptionist that I was going to call every day and she was fine with that because she knew how stressful it was. Then when my brain started spinning, i could remind myself I did the thing I could do and I could do again tomorrow. Best wishes.
posted by kat518 at 8:14 AM on December 31, 2023 [1 favorite]
posted by kat518 at 8:14 AM on December 31, 2023 [1 favorite]
One of the best ways to avoid PTSD is to find social support and people who validate you. So what you are doing here, asking what works and what's normal, and letting safe people know your situation is a good start.
If you can find it, a cancer support group specific to your demographic, might provide you with context and community and kindness. If the group is specific to stage four I would think you would do better than with one that is full of people just starting their cancer journey, and you would probably do better with one under the same medical system as you. If you are under National Health joining a group full of people on Medicade in the US will mean that it is harder to get the feeling that you belong. Lurk before posting. There is often a cat piss man in groups like this.
If having to do emotional labour for the people around you is a burden, consider if it is possible you are doing that emotional labour voluntarily as a way to control their reactions, which in turn is a way to control your own anxiety. Going into nursery school teacher mode in a crisis is a coping strategy that many strong and independent people rely on, but at the same time there comes a point when your survival needs mean you need to ditch the role of managing other people. If there is a friend or family member you can ask, request that they be a go between and do the emotional labour for you. You can ask your brother, for example, to handle your mother's emotional needs if she is otherwise going to try to get you to reassure her, and to keep her posted on your test results and treatments.
Dealing with other people's emotions around your cancer can be unbearable. If your children over function to provide you with space to be in crisis, you can feel weak, and that you are a bad parent, because it feels like your job to over function. If they do supportive things, you can feel terrible for the pain they are in on top of your own. But keep in mind that while it is the parent's job to be the strong competent one when it comes to things like paying the bills and making sure they brush their teeth and do their homework when they are in elementary school, it is NOT mere over functioning to expect you to keep everything going as normal when you are in a medical crisis. It's erasure. If you are in a medical crisis trying to make life go on as if you were perfectly well and everything is serene sailing you are practicing self-immolation. You're sick. You're seriously sick and it is not an imposition on them if your children have to deal with changes in routines and you not being available to sympathize and reassure them. If the kids and your family think that you should be keeping everything going and protecting them from the crisis you are in, then they are being sickeningly entitled. It's one thing to admire a parent who chooses to over-function to get the family through a crisis. It's another thing to feel entitled for a person with lung cancer to keep their family from feeling any impact from their illness.
Of course how much the kids may be expected to carry the load is age appropriate. A three year old can be asked to be quiet while Mummy is sick today from chemo, and give amusements that are quiet, or they can be taken out to the playground in the rain, rather than allowed to watch loud cartoons. A seven year old can be asked to put up with impromptu meals, and to talk to Nan about their feelings, instead of talking to Mummy. A twelve year old can be asked to relay messages and wash some dishes. You're not going to lean on the kids to support you. But you can and should inconvenience them. Your chemo nausea comes before their desire to watch loud cartoons, or their urgent desire to tell you at excruciating length about the squabble they are in at school with their ex-best friend.
Having people to deal with "some of whom are not very nice" is a gigantic hurdle. Sick or injured animals lie up somewhere to try to heal. Your instincts are telling you to do that now, but you have to deal with the people, whether they are unkind functionaries, or people in your social network who feel you got all the accommodations you should have during the bowel cancer, and are now resenting you for needing more, or if they are just inescapable responsibilities you can't delegate. That sucks badly on top of the wretched big suck of the new cancer diagnosis.
I found waiting until I was ready to do it, helped a lot for researching my illness and dealing with the people. But that worked for me because I could trust myself to do it in the next couple of days. Usually it wasn't during my most functional productive part of the day when I normally make phone calls and work on my duties, but late in the day, shortly before bedtime, and I am guessing that I got the motivation then because either I wasn't going to be able to sleep anyway, or that writing that e-mail or researching what the pathology report meant was going to help my anxiety by taking some of the uncertainty away.
I do a lot of masking - when I was doing the critical illness thing, I dropped a lot of it. Some was necessary for keeping safely on the good side of my medical support team so they didn't write me off as repulsive weirdo patient, or at least to let me fly under the radar as invisible as possible, but in some circumstances I did whatever weird and eccentric things I wanted. I showed up for my major medical procedure in a brand new pair of cuddly pajamas, with a teddy bear tucked into the crook of my arm, because I'd be damned if I was going to squelch my inner child at that point, and I giggled and said silly things post surgery, like demanding the person pushing my wheelchair go "Faster! Faster!" - of course I was stoned on the residual anesthetic. But I could have gone into full masking mode if I had felt it would be safer, and that was my normal default. I was able to get a little relief from stress by doing what I wanted to, and doing things that made me feel good, because I found some places where it was safe to ignore other people's expectations.
Some people find it helpful to do personal check ins regularly during a personal medical crisis. It's a matter of being able to honestly ask yourself, "How am I feeling?" and "Can I reasonably do what I have planned, that I ought to do?" and, "What do I actually want to be doing right now?" It may require practice, because when you first ask yourself questions like that, you may only get a roaring wave of misery, "I don't want to be doing this right now! I don't want to HAVE cancer again!!" But you may have to ask yourself those questions repeatedly and patiently and listen through the internal rage or grief or terror in order to get to a place where you can answer your question with "I want to work on this for half an hour and then give up while I still have some energy," or "I want to have a cup of hot tea and blubber," or "I want to tell my spouse to look after the kids and shut my door and spend the entire afternoon researching the different chemo options, and if targeted radiation is effective on this type of tumor."
Basically, you got one life, everyone's life is all too short, but right now yours is looking alarmingly shorter and more unpleasant than most, so this is where you need to put your own self-love first. Is there anything that would comfort you? Seriously, do that. You now have incentive to do the self care and self love actions that you haven't been prioritizing, because you may not have another twenty or forty years to get around to doing them. It's now or maybe never.
If getting up before dawn to see the sunrise will bring you some serenity, then get up before dawn. If sleeping in until nine thirty and getting the kids off to school appallingly late will help you feel better, then the kids will have to be okay with starting their morning at 11 AM. Now is the time to seek joy. I'm not saying joy will be easy to find. If what you crave is social connection and support and it isn't anywhere in sight, then you can look for it in fantasy, or nostalgia, or tradition, or suddenly go look for a pagan community to join, or bond with an on-line gaming group, or spend your time actively filling your search engine with queries that make you admire and love humankind more. Obviously having a warm and supportive and capable family and community would be optimal, but if it is not there, you can still take a little of your energy and time and look for small doses of the social support you need.
Quite a lot of people are starved for touch, and decide now is the time to book some sessions of massage. (Now is good, rather than later if they put you on chemo again and you end up immune suppressed during the late winter peak in Covid numbers.) You can also look for a huggy church, or hire an escort, or flatly inform family members that you need some deep pressure badly to help your immune system and you would appreciate it if they learned to give good hugs upon demand.
It can sometimes be that family members want to help, but don't know how and don't have the social abilities to figure out how. This is where having very small, very specific requests can help both you and them. Selfish people often feel very uncomfortable because they know they are not contributing, so they often do well with specific limited requests. "I want you to supply dinner every Wednesday night." "I want you to keep your job, no matter what so we still have your medical plan." "I want you to read a story to your little brother and go brush your teeth with him." "I want you to hug me very tightly and just hold on until I say let go." Depending on your difficult people, they might become less of a problem for you if they are given a sense that they are contributing and have some control on how bad the situation gets. It at least works better than non-specific open ended requests like, "Mummy is very sick so you must be very good and not bother her," or "I want you to do more around the house," or "Tell me what to do! Tell me how to get through this!"
Standards need to be open ended too. "Wash as many dishes as you can," and then accepting that however many they washed and however badly, it is still an improvement is not unreasonably demanding. When I had chemo someone brought a big disposable roasting pan full of food every week. It was extremely kind of them; it was theoretically for me to eat when chemo had me too sick to cook. But it was frequently stuff I couldn't eat at all. However it did provide easy ample food that the rest of the family could heat in the microwave, which meant they weren't cooking and making tons of dirty dishes they couldn't wash, so it left me much better off. I was much better equipped to forage for something that wouldn't trigger nausea in a kitchen that wasn't a nauseating mess of scorched frying pans and congealed grease. Naturally I would have preferred the person bringing the food to know me well enough to bring food that I could eat, and to make me feel loved in the way you do when someone recognizes you and your situation enough to step in and make it much better. But that was unrealistic - I certainly couldn't have done better than she did if the roles were reversed - and it WAS a help. A half win can make all the difference.
My cancer has not come back yet. I understand that a lot of people who go through cancer treatment endure it for the promise that it will heal them, and when the cancer recurs or the first round of chemo is declared unsuccessful, they are often unwilling to continue treatment. For many of them they feel like they paid for a cure with their suffering, and without a cure they feel cheated - it didn't work, it was worthless, it was not worth doing in the first place. Others feel that they just can't do it again. They might be willing to, but the self control required to endure the misery is not there.
Since you already had the full treatment with the bowel cancer these are feelings you may have to explore. If you figure out how you feel about your past treatment and its side effects you will handle the decisions of the future better.
Maybe you'd rather take a severe short hard course of chemo and never ever again no matter what, rather than have a milder, longer course. Maybe you have one lingering side effect like peripheral neuropathy, and you'd be willing to do chemo again, but only if it won't make the peripheral neuropathy worse. Maybe you'd be willing to go on long term, low dose chemo, as long as the distress it causes you is only two days a week with the remaining five leaving you functional so you can still care for the kids and bring in some income.
Maybe your only concern now is that if it does turn out to be un-treatable, you want to be as pain free as possible, and to get significant support for the anxiety that frequently results from shortness of breath. These are daunting, horrible questions to ask and decisions to make. But most people find knowing what the answers are helps a lot.
Knowing the answers will be extremely helpful when talking to your oncologist. They won't spend time trying to plan treatment that you are going to refuse to take. Medical oncologists are used to coming up with alternate chemo regimes, so you will be helping everyone, especially yourself if you can discuss what will work in a way that is acceptable to you.
So how to manage the wait until you get the result of the needle biopsy. I dunno if this will help for you, but for me I'd keep flipping between two scripts. One would be, "It doesn't matter if the results are that I'm going to die. I was already going to die sometime, becomes I'm alive now, so dying is inherent. I'm going to die eventually, regardless of the results. I already knew that." And the second mental track would be, "It might be slow growing, easily treatable with radiation. It might be. I don't know and I don't need to make myself miserable for weeks if it turns out that it's easy to treat with radiation, deep in the bottom of my lung and not going to be a problem. I'm still maybe going to be just fine. Maybe I'm okay."
Again, I don't know if either script would work for you, but those two would work for me, and I'd lean on them hard, along with slow deep breathing, full body relaxation exercises. I'm good at deep breathing and full body relaxation already because I use them automatically when I'm doing a migraine. Then last of all, I'd draw on my ADD to find things to absorb me so that I don't think about the test results for as many minutes a day as possible. Mindless scrolling of cat videos or wholesome life affirming memes are not a waste of time if they spare you from misery, or alleviate it. I may not be able to be free of misery, but I am definitely aiming to have it interspersed with good feelings as much of the time as I can.
posted by Jane the Brown at 10:48 AM on December 31, 2023 [5 favorites]
If you can find it, a cancer support group specific to your demographic, might provide you with context and community and kindness. If the group is specific to stage four I would think you would do better than with one that is full of people just starting their cancer journey, and you would probably do better with one under the same medical system as you. If you are under National Health joining a group full of people on Medicade in the US will mean that it is harder to get the feeling that you belong. Lurk before posting. There is often a cat piss man in groups like this.
If having to do emotional labour for the people around you is a burden, consider if it is possible you are doing that emotional labour voluntarily as a way to control their reactions, which in turn is a way to control your own anxiety. Going into nursery school teacher mode in a crisis is a coping strategy that many strong and independent people rely on, but at the same time there comes a point when your survival needs mean you need to ditch the role of managing other people. If there is a friend or family member you can ask, request that they be a go between and do the emotional labour for you. You can ask your brother, for example, to handle your mother's emotional needs if she is otherwise going to try to get you to reassure her, and to keep her posted on your test results and treatments.
Dealing with other people's emotions around your cancer can be unbearable. If your children over function to provide you with space to be in crisis, you can feel weak, and that you are a bad parent, because it feels like your job to over function. If they do supportive things, you can feel terrible for the pain they are in on top of your own. But keep in mind that while it is the parent's job to be the strong competent one when it comes to things like paying the bills and making sure they brush their teeth and do their homework when they are in elementary school, it is NOT mere over functioning to expect you to keep everything going as normal when you are in a medical crisis. It's erasure. If you are in a medical crisis trying to make life go on as if you were perfectly well and everything is serene sailing you are practicing self-immolation. You're sick. You're seriously sick and it is not an imposition on them if your children have to deal with changes in routines and you not being available to sympathize and reassure them. If the kids and your family think that you should be keeping everything going and protecting them from the crisis you are in, then they are being sickeningly entitled. It's one thing to admire a parent who chooses to over-function to get the family through a crisis. It's another thing to feel entitled for a person with lung cancer to keep their family from feeling any impact from their illness.
Of course how much the kids may be expected to carry the load is age appropriate. A three year old can be asked to be quiet while Mummy is sick today from chemo, and give amusements that are quiet, or they can be taken out to the playground in the rain, rather than allowed to watch loud cartoons. A seven year old can be asked to put up with impromptu meals, and to talk to Nan about their feelings, instead of talking to Mummy. A twelve year old can be asked to relay messages and wash some dishes. You're not going to lean on the kids to support you. But you can and should inconvenience them. Your chemo nausea comes before their desire to watch loud cartoons, or their urgent desire to tell you at excruciating length about the squabble they are in at school with their ex-best friend.
Having people to deal with "some of whom are not very nice" is a gigantic hurdle. Sick or injured animals lie up somewhere to try to heal. Your instincts are telling you to do that now, but you have to deal with the people, whether they are unkind functionaries, or people in your social network who feel you got all the accommodations you should have during the bowel cancer, and are now resenting you for needing more, or if they are just inescapable responsibilities you can't delegate. That sucks badly on top of the wretched big suck of the new cancer diagnosis.
I found waiting until I was ready to do it, helped a lot for researching my illness and dealing with the people. But that worked for me because I could trust myself to do it in the next couple of days. Usually it wasn't during my most functional productive part of the day when I normally make phone calls and work on my duties, but late in the day, shortly before bedtime, and I am guessing that I got the motivation then because either I wasn't going to be able to sleep anyway, or that writing that e-mail or researching what the pathology report meant was going to help my anxiety by taking some of the uncertainty away.
I do a lot of masking - when I was doing the critical illness thing, I dropped a lot of it. Some was necessary for keeping safely on the good side of my medical support team so they didn't write me off as repulsive weirdo patient, or at least to let me fly under the radar as invisible as possible, but in some circumstances I did whatever weird and eccentric things I wanted. I showed up for my major medical procedure in a brand new pair of cuddly pajamas, with a teddy bear tucked into the crook of my arm, because I'd be damned if I was going to squelch my inner child at that point, and I giggled and said silly things post surgery, like demanding the person pushing my wheelchair go "Faster! Faster!" - of course I was stoned on the residual anesthetic. But I could have gone into full masking mode if I had felt it would be safer, and that was my normal default. I was able to get a little relief from stress by doing what I wanted to, and doing things that made me feel good, because I found some places where it was safe to ignore other people's expectations.
Some people find it helpful to do personal check ins regularly during a personal medical crisis. It's a matter of being able to honestly ask yourself, "How am I feeling?" and "Can I reasonably do what I have planned, that I ought to do?" and, "What do I actually want to be doing right now?" It may require practice, because when you first ask yourself questions like that, you may only get a roaring wave of misery, "I don't want to be doing this right now! I don't want to HAVE cancer again!!" But you may have to ask yourself those questions repeatedly and patiently and listen through the internal rage or grief or terror in order to get to a place where you can answer your question with "I want to work on this for half an hour and then give up while I still have some energy," or "I want to have a cup of hot tea and blubber," or "I want to tell my spouse to look after the kids and shut my door and spend the entire afternoon researching the different chemo options, and if targeted radiation is effective on this type of tumor."
Basically, you got one life, everyone's life is all too short, but right now yours is looking alarmingly shorter and more unpleasant than most, so this is where you need to put your own self-love first. Is there anything that would comfort you? Seriously, do that. You now have incentive to do the self care and self love actions that you haven't been prioritizing, because you may not have another twenty or forty years to get around to doing them. It's now or maybe never.
If getting up before dawn to see the sunrise will bring you some serenity, then get up before dawn. If sleeping in until nine thirty and getting the kids off to school appallingly late will help you feel better, then the kids will have to be okay with starting their morning at 11 AM. Now is the time to seek joy. I'm not saying joy will be easy to find. If what you crave is social connection and support and it isn't anywhere in sight, then you can look for it in fantasy, or nostalgia, or tradition, or suddenly go look for a pagan community to join, or bond with an on-line gaming group, or spend your time actively filling your search engine with queries that make you admire and love humankind more. Obviously having a warm and supportive and capable family and community would be optimal, but if it is not there, you can still take a little of your energy and time and look for small doses of the social support you need.
Quite a lot of people are starved for touch, and decide now is the time to book some sessions of massage. (Now is good, rather than later if they put you on chemo again and you end up immune suppressed during the late winter peak in Covid numbers.) You can also look for a huggy church, or hire an escort, or flatly inform family members that you need some deep pressure badly to help your immune system and you would appreciate it if they learned to give good hugs upon demand.
It can sometimes be that family members want to help, but don't know how and don't have the social abilities to figure out how. This is where having very small, very specific requests can help both you and them. Selfish people often feel very uncomfortable because they know they are not contributing, so they often do well with specific limited requests. "I want you to supply dinner every Wednesday night." "I want you to keep your job, no matter what so we still have your medical plan." "I want you to read a story to your little brother and go brush your teeth with him." "I want you to hug me very tightly and just hold on until I say let go." Depending on your difficult people, they might become less of a problem for you if they are given a sense that they are contributing and have some control on how bad the situation gets. It at least works better than non-specific open ended requests like, "Mummy is very sick so you must be very good and not bother her," or "I want you to do more around the house," or "Tell me what to do! Tell me how to get through this!"
Standards need to be open ended too. "Wash as many dishes as you can," and then accepting that however many they washed and however badly, it is still an improvement is not unreasonably demanding. When I had chemo someone brought a big disposable roasting pan full of food every week. It was extremely kind of them; it was theoretically for me to eat when chemo had me too sick to cook. But it was frequently stuff I couldn't eat at all. However it did provide easy ample food that the rest of the family could heat in the microwave, which meant they weren't cooking and making tons of dirty dishes they couldn't wash, so it left me much better off. I was much better equipped to forage for something that wouldn't trigger nausea in a kitchen that wasn't a nauseating mess of scorched frying pans and congealed grease. Naturally I would have preferred the person bringing the food to know me well enough to bring food that I could eat, and to make me feel loved in the way you do when someone recognizes you and your situation enough to step in and make it much better. But that was unrealistic - I certainly couldn't have done better than she did if the roles were reversed - and it WAS a help. A half win can make all the difference.
My cancer has not come back yet. I understand that a lot of people who go through cancer treatment endure it for the promise that it will heal them, and when the cancer recurs or the first round of chemo is declared unsuccessful, they are often unwilling to continue treatment. For many of them they feel like they paid for a cure with their suffering, and without a cure they feel cheated - it didn't work, it was worthless, it was not worth doing in the first place. Others feel that they just can't do it again. They might be willing to, but the self control required to endure the misery is not there.
Since you already had the full treatment with the bowel cancer these are feelings you may have to explore. If you figure out how you feel about your past treatment and its side effects you will handle the decisions of the future better.
Maybe you'd rather take a severe short hard course of chemo and never ever again no matter what, rather than have a milder, longer course. Maybe you have one lingering side effect like peripheral neuropathy, and you'd be willing to do chemo again, but only if it won't make the peripheral neuropathy worse. Maybe you'd be willing to go on long term, low dose chemo, as long as the distress it causes you is only two days a week with the remaining five leaving you functional so you can still care for the kids and bring in some income.
Maybe your only concern now is that if it does turn out to be un-treatable, you want to be as pain free as possible, and to get significant support for the anxiety that frequently results from shortness of breath. These are daunting, horrible questions to ask and decisions to make. But most people find knowing what the answers are helps a lot.
Knowing the answers will be extremely helpful when talking to your oncologist. They won't spend time trying to plan treatment that you are going to refuse to take. Medical oncologists are used to coming up with alternate chemo regimes, so you will be helping everyone, especially yourself if you can discuss what will work in a way that is acceptable to you.
So how to manage the wait until you get the result of the needle biopsy. I dunno if this will help for you, but for me I'd keep flipping between two scripts. One would be, "It doesn't matter if the results are that I'm going to die. I was already going to die sometime, becomes I'm alive now, so dying is inherent. I'm going to die eventually, regardless of the results. I already knew that." And the second mental track would be, "It might be slow growing, easily treatable with radiation. It might be. I don't know and I don't need to make myself miserable for weeks if it turns out that it's easy to treat with radiation, deep in the bottom of my lung and not going to be a problem. I'm still maybe going to be just fine. Maybe I'm okay."
Again, I don't know if either script would work for you, but those two would work for me, and I'd lean on them hard, along with slow deep breathing, full body relaxation exercises. I'm good at deep breathing and full body relaxation already because I use them automatically when I'm doing a migraine. Then last of all, I'd draw on my ADD to find things to absorb me so that I don't think about the test results for as many minutes a day as possible. Mindless scrolling of cat videos or wholesome life affirming memes are not a waste of time if they spare you from misery, or alleviate it. I may not be able to be free of misery, but I am definitely aiming to have it interspersed with good feelings as much of the time as I can.
posted by Jane the Brown at 10:48 AM on December 31, 2023 [5 favorites]
People who say "I'm sorry" never get news from me anymore. I thought there was something wrong with me for hating that so much,
Seconding. Late this summer, I had a quite serious health situation. I'm doing better, but it's not something I've been instantly cured of, and so I'm still at greater risk for a repeat.
I knew one casual acquaintance would be negative and so I didn't even tell her. But another replied to my text: "I'm so so sorry. My sister and sister-in-law had that." I cut her off before she could send me another detailed text, saying I was focusing on the positive and proactive.
(Btw I remember when my mother survived ovarian cancer. Her wonderful oncologist told her at their first meeting, "YOU are not a statistic.")
Also, I think the state of suspended animation waiting for results is so difficult. Whatever the answer, at least then you will know what the situation is, what you have to do.
But it's all a lot. And we need to acknowledge that to ourselves: It's. A. Lot.
Which brings me to your comment about therapy. For a long time, I had the misperception that therapy consists of sitting there blabbing about your childhood, and it doesn't help with immediate issues. But I've come to understand that the most common types of talk therapy are designed to help you help yourself and to find coping strategies - now.
And it also does help to have people to "vent" to. Especially if you're concerned about what support you can get in your personal life, then a professional "ear" will be of value.
Perhaps a therapist seems to you like "OMG, not another "medical appointment." But there are options, including zooming or even phone or text, something you could do from home, car, etc. Also, some therapists specialize in areas such as illness.
Finally, please dont compare yourself to how you handled a health crisis in the past. This is a different point in your life. Apples and oranges. But I hope you can find supportive people to help keep you on track, fighting this disease. And there's always Mefi to talk to.
posted by NorthernLite at 12:03 PM on December 31, 2023 [2 favorites]
Seconding. Late this summer, I had a quite serious health situation. I'm doing better, but it's not something I've been instantly cured of, and so I'm still at greater risk for a repeat.
I knew one casual acquaintance would be negative and so I didn't even tell her. But another replied to my text: "I'm so so sorry. My sister and sister-in-law had that." I cut her off before she could send me another detailed text, saying I was focusing on the positive and proactive.
(Btw I remember when my mother survived ovarian cancer. Her wonderful oncologist told her at their first meeting, "YOU are not a statistic.")
Also, I think the state of suspended animation waiting for results is so difficult. Whatever the answer, at least then you will know what the situation is, what you have to do.
But it's all a lot. And we need to acknowledge that to ourselves: It's. A. Lot.
Which brings me to your comment about therapy. For a long time, I had the misperception that therapy consists of sitting there blabbing about your childhood, and it doesn't help with immediate issues. But I've come to understand that the most common types of talk therapy are designed to help you help yourself and to find coping strategies - now.
And it also does help to have people to "vent" to. Especially if you're concerned about what support you can get in your personal life, then a professional "ear" will be of value.
Perhaps a therapist seems to you like "OMG, not another "medical appointment." But there are options, including zooming or even phone or text, something you could do from home, car, etc. Also, some therapists specialize in areas such as illness.
Finally, please dont compare yourself to how you handled a health crisis in the past. This is a different point in your life. Apples and oranges. But I hope you can find supportive people to help keep you on track, fighting this disease. And there's always Mefi to talk to.
posted by NorthernLite at 12:03 PM on December 31, 2023 [2 favorites]
Great thoughts and ideas here. When my life limiting condition returned for a second time, I felt much more done with it all than the first time around. Things just didn't feel worth it. And I also have young kids, objectively lots to live for, etc. I wasn't suicidal. Just...done and flat? When I described this to a friend she said "So. That's depression." And I went on Wellbutrin and I stopped feeling that way. Things still sucked but I had my sense of self back. I had tried so hard to cope on my own and find perspective like I had the first time around, but ultimately what I needed was medicine for my brain to give me the bandwidth to do that hard work. Wishing you all the good things.
posted by jeszac at 1:18 PM on December 31, 2023 [3 favorites]
posted by jeszac at 1:18 PM on December 31, 2023 [3 favorites]
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posted by beyond_pink at 3:33 PM on December 30, 2023 [1 favorite]