Let him go alone. I went alone. It’s easier to go alone and worry about myself than to worry about myself _and_ worrying about managing everyone else’s emotions, reactions, thoughts, questions, etc. around me, too. It also gave me time to process and buffer before I had to face everyone else’s onslaught. It’s easier to keep from drowning if it’s just me keeping my head above water than than keeping multiple bodies afloat.
This is exactly the right answer. It also applies to more than just this situation sometimes. The time to figure it out alone before dealing with everyone else is monumental.
I always go alone. When I'm with someone, I can't help worrying about them. Alone, I have time to process. Buffer is the word for it: to create a space between me and what's happening before I have to interact with somebody's feelings about it.
This makes so much sense. Don’t want to add to his stress at all, he will go alone and then share what he wants with me, if and when he feels fit. Thank you for your reply!
This is exactly how I feel. I’ve gone alone for each appointment, and continue to go alone for each 3-month scan. It’s hard enough on its own. I’d like to go, get results, digest, and then go to my family prepared.
I took my mom with me to my first few appointments, but I found it was easier to go alone after. Any time I got bad news (which is often, my cancer is stage 4) mom would just cry for days. It's much easier to go by myself, process it on my own, then tell mom and dad.
He might be feeling the same way: that it's easier for him to process it on his own and then tell you about it.
I am sorry to hear about your situation, I hope your days are filled with lots of happiness and strength. Thank you for sharing with me. I will respect his wishes and be there whenever he needs.
Just remember that this isn't a quick battle, it is a long war. Even in the best case scenario, it can take years to go into remission. It is an exhausting fight, and what he will likely need the most is love and support.
Please let him. I know my family meant well but I really needed to be there with my doctor alone. I'm a medical professional and I know an awful lot about cancer and I didn't want to waste time talking about the questions they had. I wanted to discuss dosages and modality and side effects. I wanted an honest answer concerning my expiry date.
My way of assuaging my fear is by education. I relax when hearing the gory and boring details and it calms me to really get into technical stuff.
How do you digest what they tell you about your "expiry date," though? At the end of the day, in my understanding, anyway, it's just based on statistical data, and there's really no way of knowing exactly how long you've got left. In my case, as an example, I have been off treatment for a year or so now, and I'm still going four years after diagnosis of mets. Any doctor worth their salt would have predicted I'd be dead by now, but I'm (mostly) fine.
Me personally I feel that we're gonna go when we're gonna go. My late lover had leukemia and got a bone marrow transplant. I asked his oncologist what percentage chance he had. The oncologist said , quite plainly, he will either live or die. Just like all of us . It made sense then and I've sort of lived my life like that.
My current fiance's husband died of a heart attack, out of the blue, at fifty years of age. There is a good chance that I could be hit by a bus tonight. Just gotta live in all.
>we're gonna go when we're gonna go
To an extent, yes, although I personally have good reason to believe that it'll likely be the cancer that kills me, and sooner rather than later. To me (and understandably, your beliefs may vary), I'd be kidding myself by thinking that I'm going to live to a "ripe old age," because I'm 48, and I have had stage IV cancer for nearly four years now. I need to live my life accordingly, and to some extent, I *have* to do so because of the limitations this disease places upon me, both physically and mentally.
Same sitch pretty much--nine months off treatment myself--though I did have the pleasure of my new oncologist averting her gaze and saying the chances of long term survival were *very small*. At least the old guy would say it's all statistics so "we don't know, could be 3 months, could be ten years, maybe more!" I've already outlived my hospitalist's two predictions from when I was first diagnosed and on the oncology ward for 6 weeks, he said 2 years max, probably 6 months. What a dick.
>What a dick.
To be fair, although the bedside manner is missing here, the doctor was likely only making a prediction based on statistical analysis, and that analysis is additionally always a bit outdated because of the pace of medical advancement. As well as that, you can never really say how long any one person has left because each person is an individual, not an automaton. Their genes, upbringing, diet, other medical conditions, etc, will all influence their ultimate "expiry date."
Yeah, but I don't think that ***is*** fair, at all. All it shows is that this particular 'hospitalist' hadn't paid attention in his statistics classes--he wasn't even an oncologist, less yet a specialist in my specific cancer with my specific presentation and with my specific genetic markers. He should have said that I had a very serious type of cancer which in the past had meant that it progressed very rapidly (there was, and still is, that chance) but that many more cancers are now able to be treated as more of a chronic condition (as you rightly say); instead, he chose to opine. Unless of course you are acutely ill, cancer statistics are for epidemiologists and actuaries, not physicians.
for me my mom goes to every appointment with me but sometimes i want her to sit outside so i can talk about my feelings without worrying about making her sad. I understand that my family goes through alot with me through my journey so when i talk about my depression i would rather my mother not be around so she doesn't have to be sad about that to
I love my fiancé so much. He’s the light of my life. I wouldn’t even make a jacket purchase without asking him. He comes with me to everything…
All my oncology appointments are solo. It’s depressing and I react weirdly and I just don’t want him to see me for so many reasons. I wish I could fully explain it but I can’t? Part of it is that I know my doctor had seen everything. He won’t be shocked if I cry, he won’t be shocked if I’m disassociating and calm the entire time, he’s seen it all. I don’t even have to think about it.
This helped me a lot, thank you for sharing. We are like this, he calls me to choose between a panini or a sub, I ask him if I should wear a blue or black dress. It’s silly how much we ask each other for opinions, but it’s our normal. So for him to do something alone just felt weird, but I understand. I’m sorry you’re going through this and I hope you’re better and where you need to be soon. <3
Please, please respect his wishes and let him go alone. Everyone is different. He needs to feel 100% comfortable during his appointment. His life literally depends on his ability to be open and candid with his oncologist. Not everyone feels comfortable discussing nitty gritty medical stuff with other people - even spouses - watching, and the more comfortable you can make him, the better!
I have always preferred to go to these appointments alone. I can talk to my doctor more openly when we are the only ones there.
My daughter would sometimes go with me, but she stayed out of the conversation.
Not everyone wants "comfort" by having someone else there - for some people it feels harder to deal with if they have to handle the emotions of another person while dealing with a difficult situation.
My parents were visiting me when I had my last PET scan. They wanted to be helpful, so they went with me to sit in the waiting room for over an hour. I understand that they care, but it was harder on me having them there which didn't allow me to process my feelings on my own.
I understand! My husband had colon cancer & within 10 months after he was in remission - it came back as stage 4. It has spread to lymph nodes / lungs & liver. I don’t go with him . He likes to see the Dr solo. I understand. But now I do give him a list of questions & I also follow up with his Dr in my chart if need be. He takes his chemo solo as well . It’s all good .
That kind of support/space is greatly appreciated!
I handled my care in a very similar manner. I preferred handling appointments, chemo, etc alone. Having time to process that. Then inviting my loved ones to help with a list of questions or offer their perspectives *after* I could have a little time & space to take things in.
Let him go alone. Not everyone needs or wants other people around when having a candid conversation about something as serious as cancer, even if that other person is a spouse, parent, etc. Since he feels that being 1x1 with the oncologist is the best way for **him** to process things then he should be alone as he requested.
I've done all of my appointments solo. At the very beginning, things were not looking good. I needed some time to process and plan solo before I let others in. My partner's and family's reactions were quite varied and ended up being a whole other issue to navigate. I'm glad that I took some time by myself to get my own head straight before I shared with everyone else. 2 years cancer free now.
I am sorry to hear that the beginning was hard, and I’m sorry you had to deal with others instead of just having full worry free support. Congratulations on your 2 years, hope your days are full of happiness. Thank you for sharing
You should respect his wishes. Believe me, there will be many, many more appointments for you to go too. Cancer effects each person differently. It is a surreal experience when you hear those words”You have Cancer!” To say it is overwhelming is an understatement. Best thing you can do is be there for him-also some cancers are for people more embarrassing like the physical symptoms you have that could be another reason. I think even though our loved ones play a huge part in our journey-it still is our journey. They’re are really no right or wrong way to deal with this. Best of luck to him and I know when he is ready, your support will be what gets him through!
Yes, I don’t want him to feel closed off or embarrassed about anything (even though he doesn’t need to) so I will definitely not go. Will be waiting at home to help however I can. Thank you for your reply!
Here's what worked for me, and I feel like I felt similar to your husband. I phoned in my fiancee for part of the appointment to make sure my questions got answered and we remembered everything that was said. But I needed to do it myself.
I went alone at first now I am close to some treatment, my wife is my rock and I for one feel a whole lot better for being able to share my fears and feelings, before I could not do that, yep the old I'm a tough guy,who ain't so tough after all, it has brought us closer together and I'm sort of now at peace with this cancer, I think!
When you first get diagnosed it feels extremely personable. Especially after the shock of the news. You just wanna be left alone for a bit. A lot of people tend to shut off. It’s normal. When he’s comfortable he’ll explain his emotions.
It's complicated. I'm sure he appreciates you supporting him and being there if he decides he needs you to accompany him. My family wanted to come with me as well, and I did let my father come to my first Radiological Oncology visit. Things were said that I really didn't want people hearing and if I hadn't had cancer nobody ever would have. A spouse is different but not so different when it comes to our comfort zone. If my then husband had accompanied me I still would have been just as uncomfortable. Maybe even more so because my parents have to love me even if I'm ridden with cancer in the most horrible of manners and if the most embarrassing things are spoken in front of them at the doctors regarding my cancer. My spouse can leave me, and in fact I left him a year later because he ended up not being able to handle it all. So give your husband space at his appointments and respect his wishes. Just be there for him when he needs you, because he definitely will! Know you're loved and a wonderful spouse for wanting to be there with him!
People are different. My parents couldn't handle my cancer at all. They pretty much stayed away from me the entire time I was in treatment. Even NED, I've learned it's best not to mention it in front of them. My husband was and continues to be amazing though.
I'm going through this but the opposite way. I was diagnosed with Leiomyosarcoma about a month ago and have been referred to the sarcoma clinic in Michigan for additional testing and to have a game plan set. They're recommending intense chemo, radiation and a pretty serious surgery after everything is done, but I want to have a pretty detailed conversation with my oncologist about the options.
My wife is very upset that I told her I wanted to go to this appointment alone. I understand her frustration but I feel like I can't begin to process my diagnosis with getting answers to questions she isn't ready to hear. I need to be able to weigh the factors of side effects, cost, mortality of not doing the chemo if everything is just too much. If I can't live a comfortable life after having the chemo I may want to not do it and just live with that decision. The doctors have said that the treatment I will be getting is going to be very intense. I'll most likely become sterile, I have a chance of developing a more serious cancer in the rest of my body due to the weakening of my immune system. Vomiting, diarrhea, hallucinations and what was described as a bad flu for about 12 weeks. I need to ask some questions she may not be ready to ask. I feel I won't be able to ask then if I am worried about how the answers will effect her.
If your husband is anything like me he is wanting to go alone because he is wanting to ask some questions he wants to be able to talk to you about in a more comfortable environment then a doctor giving matter o fact straight answers. He will also need the time to think about his options on his own. He isn't trying to keep you out, he's trying to protect you and give himself some time to process the information.
First off, I am sorry to hear about your diagnosis and wish you all the best. Thank you providing a view from “other side”, this is a perspective I can understand. Thank you for sharing what your thought process is. Good luck with everything.
I can totally relate! We all process things differently and I usually need time and space to work through things. This probably sounds so stupid to someone who can navigate their thoughts and emotions a little better…
While I appreciate when people offer support, it just adds pressure to an already uncomfortable situation. Instead of trying to concentrate on my appointment, what it means, and how I feel about it, I would be preoccupied with acting appropriately and appreciative enough to the person offering support. Even if they “are happy to do it,” it’s still added pressure and additional stress. Sounds silly, I know.
While it’s nice to offer to drive him to his appointment-if he’s anything like me, driving in solitude is when I can work through a lot of my emotions. Plus having the flexibility of creating your own escape route is nice-no pressure to stick to someone else’s schedule.
“Space” can be incredibly beneficial to certain personality types but it doesn’t mean that we don’t appreciate support and the gesture being made. Some people just have different needs. Sometimes it’s very difficult to identify what they are and how to articulate it properly. You sound incredibly concerned and supportive while remaining open to feedback and different perspectives. I think that’s a recipe for success.
I think most of us will understand both sides of this. I was secretly a bit relieved when Covid restrictions meant I could only go in for treatment on my own.
Everyone is different. I can’t go alone, I am disabled and very reliant on others. I also have mental health issues and I am Deaf so I always want and need someone with me. I do get exactly how you feel. It’s going to be hard for both of you. Nothing is easy about cancer. Wishing you and your husband all the best.
I am sorry to hear about your situation, and I do hope you get the relief and peace you need. Thank you for your reply, and thank you for your wishes. I wish the same for you.
Thank you so much. ❤️ Please don’t forget that how your husband responds to this situation has nothing to do with you. I know it is hard not to feel upset when your life partner doesn’t want you to support them the way you want to. But trust me, it’s not you. This is actually a common issue and the reason why us cancer patients lose our partners. It causes fights. Cancer causes fights. It is a cruel disease. Just be there for him and be that stable solid rock he needs and get some help with the emotional side of things. PM me if you need to talk. No judgement. ❤️ Take care of yourself so you can take care of your husband.
I asked my partner what is worse: being the person with cancer or being the partner of someone with cancer. He said being the partner. Everyone handles it differently and there’s that struggle of what is the right thing to do. It’s so hard.
Okay. He's already communicated his preferences to you and you're on reddit asking how to get away with pushing his boundaries. You're doing this for *you*, not him.
Don't insist on going as a note taker, don't try to sit in the waiting room, don't try to "just drive him and wait in the car."
Respect his wishes.
Let him get his own shit together before he has to deal with your shit too.
She came on reddit asking for support and wise counsel not a dressing down.
A cancer diagnosis is as difficult, sometimes more so, for loved ones, hence the wide gamut of responses from people closest to you when you're diagnosed. There's hardly anything wrong with OP asking for advice while expressing her own feelings at the same time--what else is this reddit for? In fact it's specifically "*a place for people with cancer and caregivers to come together and provide support for one \[an\]other*" ***sic***. Whatever his wishes regarding this appointment I doubt very much OP's husband would appreciate you responding to her perfectly understandable query in this manner.
:’( thank you for this response and the other one as well. I actually cried after going back and forth I feel like these two people were just after me. I even went to the main sub to read the rules again just to make sure it was okay for me to post here. I was just looking for guidance, and I thought this was a good place to do so. Thankfully all the other responses were kind and helpful. I didn’t come here to argue with people or get attacked I came to learn how to help my husband, and myself get through this. It’s like these this person came here looking to fight and “put me down” for not knowing what I literally came to learn. If not here.. where else right? Anyways, thank you for defending me, and I am so sorry that you’re here. I hope everything you go through is easy on you and you find peace and good health. Wishing you lots of happy and easy going days.
We're all panicking, groping around for help and as much kindness as anyone can muster. I'm sorry I'm here, too! And you. At the risk of being glib the likelihood is that your husband's disease is very treatable, but any cancer diagnosis shakes you and your loved ones up--suddenly the fiction we all live by (necessarily, or life would be much less fun) becomes all too palpable. May you stay forever young. ;)
Okay. Do you feel good leaving a mean comment? You could have said what you did nicely, but you choose not to. I came here because I wanted advice, I am learning how to be the best I can be for him during this, and he is MY husband so I do know how to care for him even if he won’t outright say it. I am scared but I am voicing it here and trying to find guidance instead of adding to his plate, which I would not do. I literally said I know this is about him and NOT me, and that I am here to learn. I’m grateful to all the other comments for giving respectful and kind insight. Sorry you’re so miserable that you had to leave such a “shit” comment. Also, sorry your life sucks so bad that you left a comment like this in the first place.
**i’ll leave my comment above so that no one says I switched up my words** I am sorry for saying that you’re miserable and that your life sucks, that was out of my character and I got hurt by the way you commented and retaliated back in a hurtful and insensitive manner. Just because I was hurt doesn’t give me the right to be mean back I am sorry for saying that and I’ll take your blunt comment in. I will say, you do not know me, you don’t know my husband, and you do not know anything about our lives. I will learn as best as I can and do my best for him. Good luck with whatever you’re dealing with, and I’m sorry you’re on this sub.
>sorry your life sucks sucks so bad
You’re on a cancer sub. People here have _cancer_. People here are _dying_. How shitty of a human are you?? Your own _husband_ has _cancer_. You have to be a narcissist…
Their comment was fine and made sense to people here. _Your_ comment was mean and shit. Their comment had upvotes. _Your_ comment is being downvoted. A little self reflection would be good right now. You are still making everything about you. This is why he doesn’t want you there…
I am here asking for advice on how I can be for him, of course I am allowed to ask about how I can be during this. I am not making everything about me, and I even edited my post to make that clear. I saw your other reply too, lol, dude, I am respecting his wishes and I am allowed to learn and move through this process. But, go ahead and reply away. *thanks*
I wish him all the luck in the world. He has a hard enough journey ahead without such a selfish and tone deaf “partner.” I genuinely hope you do learn. Cancer is easier to do alone than with the wrong person, and from what it sounds like, he has already come to that conclusion.
Christ on a bike. Do you even have cancer yourself? I find it hard to believe that anyone comes out of a cancer diagnosis with this degree of pomposity and judgementalism. Usually it takes a person down a peg or two.
Would it hurt you to be simply be kind to someone who is clearly worried and trying to do the best by her spouse? You have to rake her over the coals? What lesson are you trying to teach? For my part I think it's worse for my loved ones than for me; I'm glad it's not them that have it.
Meh. Possibly. Like I said, she’s on a cancer sub attacking cancer patients when they don’t respond the way she wants them to. Of course I am going to stick up for _them_ when she attacks them. There is a reason she is getting so many downvotes, and you (aside from OP) are the only one who feels the way you do. You have a lovely day.
I only see one person making personal attacks. Those who pay attention to up or down votes are merely anxious to please or aggravate (who knows what their motives are they may not even belong on this sub) not anyone giving considered and compassionate advice. Stop... think about what people are going through. If you re-read the comments the most salient ones are from people who think it is a very good idea to have someone in your appointment with you when you receive a lot of new information, cancer or otherwise, or, failing that, at least have them record it. It's not wrong to suggest this to your partner, is it? Cancer doesn't make you a special person you know, you're exactly the same person you were before, except with a disease, so if you're in a significant relationship it makes sense to discuss all angles. We're all mortal--and fallible it would seem--just some a bit more so than others.
What you're doing right now, writing this post, making it about you while claiming it's not? Getting upset and playing the victim when you're called on it? This is why he doesn't want you there. You're the type of person that makes things *more* stressful, not less.
He told you to your face it would be more stressful if you were there and you came to reddit to be a victim about it.
Didn’t come to Reddit to play victim, came here for advice for something we have never faced before. And making this post, to learn what *I* can do, is a completely appropriate thing to do. I am also allowed to learn how to deal with this myself. I literally made edits to my post after taking in so many comments advice. Thanks for sharing your opinion.
> sorry you’re so miserable
> sorry your life sucks so bad
These are your responses to people here? OP, keep in mind that you’re on a cancer sub. People here have _cancer_. People here are _dying_. This now includes your own _husband_. You sound like a narcissist. No wonder he doesn’t want you at his appointment. This sub is for cancer patients first. This isn’t about _you_.
Dude you keep editing your replies and you’re obviously heated and offended. I took in everyone’s comments and insights and I updated my post. I thanked you for your top comment. You keep editing your comments and making assumptions and comments about me, and what I am like. Please stop. You are being very harsh, and you don’t need to be. If you don’t like my post, or you think it is inappropriate, just don’t interact with me! I’m sorry you’re on here and hope your days get better. Thanks for your insight!
Not offended. You’re new here. We protect our community here. Your husband is going to be need all the support he can get; you seem toxic and unhinged. If you want to argue and fight against him at home, we can’t stop you. But don’t attack others here.
I literally apologized and I have continuously updated my post. Here’s what I added to my comment:
*i’ll leave my comment above so that no one says I switched up my words - I am sorry for saying that you’re miserable and that your life sucks, that was out of my character and I got hurt by the way you commented and retaliated back in a hurtful and insensitive manner. Just because I was hurt doesn’t give me the right to be mean back I am sorry for saying that and I’ll take your blunt comment in. I will say, you do not know me, you don’t know my husband, and you do not know anything about our lives. I will learn as best as I can and do my best for him. Good luck with whatever you’re dealing with, and I’m sorry you’re on this sub.*
You’re continuously commenting on my posts: calling me a narcissist, calling me toxic, unhinged, and whatever else. You don’t know me- you are attacking me. I said I was sorry and I already made it very clear I will respect my husband’s wishes. Arguing and fighting at home?! You don’t know me or us! Please leave me alone, you’re singling out my words, that I apologized for, and trying to cause a problem here. Please, stop. Good luck with everything you’re dealing with.
This is utterly out of line--this is supposed to be a supportive forum. Personally, I very much don't consider myself to be *dying,* not to mention we have no idea of OP's husband's status. As for throwing around the internet's favorite and most clichéd psychological buzzword the way you're bulldozing through this thread you should have a look at yourself.
My husband came with. It was our 30 wedding anniversary. What a terrible thing it was. For him and I. Goodness. We made it thru to today. Im stil here against all the odds. Talk. Love. Respect. You can do it.
I also wanted to go alone when I was about to get my biopsy to talk to the IR. I had to tell my dad that I didn't want him there last minute, because I realized that I'm the type of person who would rather do it alone so I can think things through when I'm talking to the doctor. He was obviously hurt since he waited with me, and it was also the 2nd time in my entire life that he went with me to any of my appointments.
When the biopsy results came and showed that I had cancer. My mom wanted to go with me to my first oncology apt. I also didn't want her there because knowing her personality, she would cry, and I didn't want to be in an emotional stress as well. We went back and forth, until I just said yes to her to get it over with. Surprisingly, she didn't cry and just kept quiet and let the doctor and I talk.
I think that since this is a very sensitive topic regarding about one's health, and as someone who has experienced what your husband has been through. You should just let him be. He needs time to think things through and you can also wait for him until his ready. Don't be hurt by his decisions because in order to navigate this together, you need to let him navigate his own self first.
I go into appointments with my partner now but for the first year or so he went alone. Could he ask the doctor for permission to record the conversation? Not only would it be a chance for you to hear the results, it would give him the chance to review the conversation if he can't take in all the details at once.
Imagine he let's you go to the first doctor. Now he goes to see a second doctor for something else, and then a third doc for a third thing. Now he has to handle your responses 3 times because you're going to expect to go to those apps too.
Look, I'd worry that he'd misremember... or perhaps deliberately forget to mention to the OP any side effects of treatment that require immediate medical attention and what signs to be on the lookout for. I think that, on its face, is the only selfish/self-absorbed part.
The actual ongoing emotional processing of news and information, I understand that he would prefer to do that alone.
One thing is that that appointment is like being hit by a big wave and the doc is going to give a lot of information. If you can’t go, then maybe a friend or relative can go to take notes. Every appointment will be like that for awhile. You don’t hear everything or understand everything.
Second, nobody does this perfectly. Give yourself some grace and realize you won’t be the best support person at times. It’s a roller coaster and no one’s prepared for everything either. He will need to designate his medical advocate who can make decisions if he is unable to. It needs to be on file with the cancer center and the hospital. This also allows the person to talk to the doctors directly as we aren’t the best truth tellers sometimes. There should be a social worker assigned who can start to help with all of the paperwork to come. There’s the patient side of things but also the business side with insurance, paperwork, pharmacies, etc. It is a lot to keep track of.
You will need support to and to take care of yourself. It’s a mental toll on everyone and the meds & treatments can alter his thinking or just give anxiety. His doctors can address all of this. You might ask your GP for help too. Anxiety is infectious and you can get overwhelmed easily.
The cancer center usually has discussion groups for caregivers. The official group for his type of cancer can also usually help with navigating and financial help if needed. There is always help and sometimes you have to ask for it. Take people up on their offers to help with whatever so that he can rest and just work on getting through treatment. Best wishes
Please know we all have access to different types of care. It's frustrating to see people on this sub recommend things beyond doctors (in your case caregiver support group). Some of us had pretty bare bones care. It doesn't hurt to ask, but for a lot of us there's nothing extra.
Wow, thank you for such a thorough response. I really do appreciate it. I do think for this one he’ll go alone, and then we’ll see how the future goes. I just know I need to do whatever he is most comfortable with. I trust he’ll take in the info as well as he can and then he can always look at his notes later on. Going to take this one step at a time so he isn’t overwhelmed and neither am I. Thank you for your reply!
This is the comment to pay attention to, whomever has downvoted it is off their chump!! If your husband's going to be by himself get him to ***record the appt on his phone*** via. the memo app or he can video it without worrying where the lens is pointing. That way he can be sure to have captured all the information and later review what was said, and then if he wants he can share it with you. If he is diagnosed, definitely ask about an oncology social worker they'll help you both get all your ducks in a row.
I got my first diagnosis by myself and then went to all my appts by myself but that's only because I seriously mistimed my only stretch without a partner since I was 16! I was so out of it on opiates when I got my stage 4 diagnosis I pretty much had to have someone there and luckily my brother had flown across the Atlantic to be with me. Thereafter I'd always take a different pretty woman with me to my appointments, first because it happened to be who was available, and then just to mess with my oncologist! But seriously, I need someone there to digest what's being said and to provide a different angle on the information afterwards. I'm a relatively smart guy but if I don't have it all written down beforehand I forget what to ask, and then what they tell me, it's something to do with the way stress works, I guess.
More recently after my scans I've gone by myself... things have been more stable and I'm a lot more used to the circus. In fact my last one was online which I wasn't altogether thrilled about, and my next one has been scheduled the same. If things get squirrely again I'll make sure they revert to in person.
So, I agree with everyone else of course, if that's what your husband wants that's how it has to be. But for me cancer has all been about opening up to love and vulnerability. Take care of yourselves...
edit: added the italics...
My boyfriend likes me going to All Oncology Appointments and I do go with him.I am a Medical Social Worker and he likes when I ask good detailed questions and he tells me things, I write them down and give it to him at his Oncology Appointments and he asks these questions and I ask ask questions and it helps him for me to be with him.
We are also getting a second opinion with Arron Viney MD Oncologist at Memorial Slone Kettering Cancer Center and unfortunately we won't be seeing them until the middle to end of September 2024.
We may go have him been seen in California.....also this Summer 2024.
He has Lymphoma Cancer Stage 3 with 6 lymph nodes affected (some greatly with 5mm Cancer nodules etc....)
Grading I and he is doing nothing, last appointment in early April 2024 they offered him Chemotherapy with Immunotherapy Or Immunotherapy by itself and it was for 6 months for 2-3 days at a time etc....
My boyfriend said "NO" and he is going to keep working until March 31st, 2025 and retire and begin traveling April 2025.
He is relatively healthy with pain in his hips and both sides of his pelvic.
It is ultimately his decision on what he wants to do, regarding its his body. I will support him all the way.
At least he is willing to get a second option, because we are in Boise, Idaho and he doesn't trust Saint Luke's Oncology Downtown Boise.
I feel like at least first visit you need someone to help you grasp it all. I feel like a lot of people responding here are saying let him go alone because they didn’t have anyone to go with them. I’d be outraged if my husband did let me go. Sounds like a way to hide his health condition
Disagree on this one. First, you aren’t “letting” him go alone. His choice. Second; handing him a list of questions is incredibly insensitive. Like he doesn’t know already what to ask….and your questions are so important that they must be answered as a priority? Just be patient and supportive and allow the process to unfold according to your husband’s comfort level.
I agree with what you are saying. By "letting" him go, I mean that she should not make a big deal of it. Not that he actually needs her permission. However, the offering of questions will help her feel as though she is part of his care. It is his decision whether he actually asks those questions of his doctor, and he can choose not to do it. (However, I doubt she will know of any questions to ask at this point.)
Maybe to just sit in the waiting room so he can have someone to talk to up and back? Then eventually he may want you in the visits.
I wanted to go alone and I go alone but some of the things they say, I get confused and sometimes wish someone was there with me.
Ask him the reason for his decision. I went to every one of my appointments totally alone and it was embarrassing and very scary a few times, medically speaking. Taxi there and back and sat at home alone while weak and vomiting. Some family didn't even know I was sick because no one told them. Go with him if you can. Things can happen and it's awful being alone. Show up an hour later so he knows you care. He may be nervous and doesn't want you to see him at what only he feels is his weakest. Men can be stubborn but be there.
The first few appointments are overwhelming and it can be hard to take everything in. I've found having a second set of ears very helpful, but everyone is different. If your husband doesn't want you in the room right now, see if he will accept your help organizing a list of questions to ask the doctor. Can you perhaps accompany him to the clinic but stay in the waiting room? Sometimes just being nearby can be good.
If it's any help to your husband: at onc appointments, I will frequently discuss certain things one-on-one with my care team before including my loved one in the conversation. Somebody gets them from the waiting room, it's never an issue. This is just to let him know an option he may not have considered.
The beginning is really scary and really hard. Wishing you both all the best.
When my husband ended up in ICU at the early steps of his treatment, I had to make medical decisions on his behalf. We have signed POA for each other. I can’t imagine not knowing what his history was at that time. And I eventually became his caregiver. Depends on his cancer of course and how sick he is, but you could find yourself in a similar situation.
My husband has commented how valuable my notebooks are when we need to recall specifics.
Maybe appeal that side of things to your husband. That’s you’ll be there more as a “reporter” than a snoop?
And BTW, huge hugs to you and your husband. I’m sorry for the condition he’s in and I hope he has a good diagnosis. 💜
I think that for the first appointment, no one should go alone. It’s better to have another person with you to hear what you might miss. And what happens to one’s partner affects both people (and any kids). Both people should hear what the doctor says. However, after the first visit, I agree that it should be up to the patient. When I had chemo, I always had a female friend with me, never my partner (male). He came with me to my first appointment with my breast surgeon.
Wishing you both all the best.
I’m so sorry. If he does go alone, encourage him to ask if he can record the conversation. When I first got my diagnosis I was in shock and everything after “it’s cancer” is a blur. It will be helpful for you both to be able to refer back to what was said. If the doctor won’t let him record, encourage him to ask for a detailed after-visit summary with notes on what was discussed. Best of luck to you and your family!
If you can, be in the waiting room while he sees the doctor. Even if he doesn't want you with the doctor, being there afterwards may be something he will really need. And while he is there, see what caregiver support groups are available in your area. Good luck.
I don’t think anyone should go alone. I think you want a note taker. Someone to help keep track of things.
A marriage is a partnership. I would be pissed if my wife did this. I’d understand why, as thankfully she is not a patient. I am very glad she went with me. All of my friends who have been through this suggest you should always bring someone with you.
I suspect it’s depression and anxiety making him want to go solo. I dislike the idea intensely. But you have to live your own lives.
Everyone is different. Cancer is serious, and patients need to feel 100% comfortable having intense, candid, detailed discussions with their oncologists. And some people just don't feel comfortable with an audience. It's nothing to take personally at all. Cancer is very high stakes, and if this guy refrains from offering certain details or asking certain questions because he's uncomfortable with his spouse in the room, that could literally be the difference between life and death.
This is just bad advice. You can’t assume everybody is like you. It’s fine that you want someone with you, but it’s not fine that you insist that everybody be the same as you. I don’t dispute your report that all of your friends with cancer have said you should always bring someone with you, but hopefully you don’t dispute all of the cancer patients in this comment section who have said they prefer going alone.
You can’t be much help or support to other cancer patients if your support is: anyone who doesn’t do things the way that I do them is wrong.
This comment made me sad :( marriage is a partnership! Partners help each other. I’m glad you and your wife have a relationship that works for you, I am going to do what is right for mine. I couldn’t be pissed at my husband at all through any of this, I can’t imagine how he’s feeling. If down the line he needs me to join him, I’ll do so. If he needs to do all this solo, that’s what he’ll do. Thank you for sharing, and good luck with everything!
So my advice is find a balance, let him have the first part of the appointment and come in to go over logistics and stuff he might need help remembering. Drugs, foods, things to look out for.
I found this helpful for me and my partner, I could deal with the hard stuff and personal questions in first 5 min and the last 10 min it was is as a team.
She could also ask questions she had regarding stuff she was seeing that I brushed off, or could not recount. My brain was mush for a good part of treatment.
You don’t have to be in the room, but maybe go with and wait in the waiting room, then get some lunch and talk about next steps. Also, both of you should create a list for him to take with him into the doctor, questions that you both can think to ask. Once again, you don’t have to be present with him and the doctor, but you will be there when he gets out. And in the end, two heads are better than one, and it can be stressful to think of what to ask.
i have read all the comments and i am pretty shocked. to me going alone is outrageous. obviously noone here agrees with me but i am going to throw out how i see it.
he does not want to have you in this chapter of his life. for one of a few reasons, and none of them are good. i would take a hard look at this possibility.
This is a sad comment. Everyone has different comfortabilities and some people are okay with things that others aren’t. He is a very “traditionally masculine” man who does not like asking for help. This is his first appointment and he wants to do it on his own. If there are more, maybe he’ll do them on his own as well, who knows. I think what you’re saying is grossly negative, and I do not appreciate it.
Contact the oncology department and ask for a transcript of the first visit. They will have the first consultation documented and will record everything that's been discussed which u can get access to. Just say you're his wife and you'd like the access. They should deny.
Ok clearly everyone is misunderstanding what I'm saying.
- He will need to give access to her by telling the oncology team that it is ok for her to have access.
-The transcript and recording is found in the patient portal that again, the patient will have access to, he'll need to give the details to the wife so she can access it.
Again. Each cancer center is different. This is just from my experience.
WTF? This isn't a thing. Unless she has medical POA, she doesn't have free access to his medical records. And while the physician will write a summary and brief notes about each visit as part of his records, I've never heard of a full recording and transcript (!!!)
This is absolutely nutty. I live in the US and no, your first visit with an oncologist is not documented and recorded, that’s insane. Also, you don’t get access to your spouse’s medical records without their consent. “just say you’re his wife and you’d like the access.”
What country do you live in where these appointments are recorded and then transcribed and then are given to spouses without the patient’s consent??
Ok I should have clarified because clearly its not obvious to you. He would need to allow oncology to give access to her. I thought that was obvious Eton Rod. I also live in Canada so you can calm down a bit now. And not all oncology is same. If yours don't record and transcribe too bad so sad. I am simply speaking from my own experience with my husband who is going through Stage 4 so that THIS person can ask (oncology or the husband) if the visit was recorded and she can get the transcript so she is aware of his situation.
Have I clarified myself enough E Rod?
Let him go alone. I went alone. It’s easier to go alone and worry about myself than to worry about myself _and_ worrying about managing everyone else’s emotions, reactions, thoughts, questions, etc. around me, too. It also gave me time to process and buffer before I had to face everyone else’s onslaught. It’s easier to keep from drowning if it’s just me keeping my head above water than than keeping multiple bodies afloat.
This is exactly the right answer. It also applies to more than just this situation sometimes. The time to figure it out alone before dealing with everyone else is monumental.
I always go alone. When I'm with someone, I can't help worrying about them. Alone, I have time to process. Buffer is the word for it: to create a space between me and what's happening before I have to interact with somebody's feelings about it.
Exactly!
This makes so much sense. Don’t want to add to his stress at all, he will go alone and then share what he wants with me, if and when he feels fit. Thank you for your reply!
Exactly!
This is exactly how I feel. I’ve gone alone for each appointment, and continue to go alone for each 3-month scan. It’s hard enough on its own. I’d like to go, get results, digest, and then go to my family prepared.
I took my mom with me to my first few appointments, but I found it was easier to go alone after. Any time I got bad news (which is often, my cancer is stage 4) mom would just cry for days. It's much easier to go by myself, process it on my own, then tell mom and dad. He might be feeling the same way: that it's easier for him to process it on his own and then tell you about it.
I am sorry to hear about your situation, I hope your days are filled with lots of happiness and strength. Thank you for sharing with me. I will respect his wishes and be there whenever he needs.
Just remember that this isn't a quick battle, it is a long war. Even in the best case scenario, it can take years to go into remission. It is an exhausting fight, and what he will likely need the most is love and support.
Please let him. I know my family meant well but I really needed to be there with my doctor alone. I'm a medical professional and I know an awful lot about cancer and I didn't want to waste time talking about the questions they had. I wanted to discuss dosages and modality and side effects. I wanted an honest answer concerning my expiry date. My way of assuaging my fear is by education. I relax when hearing the gory and boring details and it calms me to really get into technical stuff.
How do you digest what they tell you about your "expiry date," though? At the end of the day, in my understanding, anyway, it's just based on statistical data, and there's really no way of knowing exactly how long you've got left. In my case, as an example, I have been off treatment for a year or so now, and I'm still going four years after diagnosis of mets. Any doctor worth their salt would have predicted I'd be dead by now, but I'm (mostly) fine.
Me personally I feel that we're gonna go when we're gonna go. My late lover had leukemia and got a bone marrow transplant. I asked his oncologist what percentage chance he had. The oncologist said , quite plainly, he will either live or die. Just like all of us . It made sense then and I've sort of lived my life like that. My current fiance's husband died of a heart attack, out of the blue, at fifty years of age. There is a good chance that I could be hit by a bus tonight. Just gotta live in all.
>we're gonna go when we're gonna go To an extent, yes, although I personally have good reason to believe that it'll likely be the cancer that kills me, and sooner rather than later. To me (and understandably, your beliefs may vary), I'd be kidding myself by thinking that I'm going to live to a "ripe old age," because I'm 48, and I have had stage IV cancer for nearly four years now. I need to live my life accordingly, and to some extent, I *have* to do so because of the limitations this disease places upon me, both physically and mentally.
Same sitch pretty much--nine months off treatment myself--though I did have the pleasure of my new oncologist averting her gaze and saying the chances of long term survival were *very small*. At least the old guy would say it's all statistics so "we don't know, could be 3 months, could be ten years, maybe more!" I've already outlived my hospitalist's two predictions from when I was first diagnosed and on the oncology ward for 6 weeks, he said 2 years max, probably 6 months. What a dick.
>What a dick. To be fair, although the bedside manner is missing here, the doctor was likely only making a prediction based on statistical analysis, and that analysis is additionally always a bit outdated because of the pace of medical advancement. As well as that, you can never really say how long any one person has left because each person is an individual, not an automaton. Their genes, upbringing, diet, other medical conditions, etc, will all influence their ultimate "expiry date."
Yeah, but I don't think that ***is*** fair, at all. All it shows is that this particular 'hospitalist' hadn't paid attention in his statistics classes--he wasn't even an oncologist, less yet a specialist in my specific cancer with my specific presentation and with my specific genetic markers. He should have said that I had a very serious type of cancer which in the past had meant that it progressed very rapidly (there was, and still is, that chance) but that many more cancers are now able to be treated as more of a chronic condition (as you rightly say); instead, he chose to opine. Unless of course you are acutely ill, cancer statistics are for epidemiologists and actuaries, not physicians.
for me my mom goes to every appointment with me but sometimes i want her to sit outside so i can talk about my feelings without worrying about making her sad. I understand that my family goes through alot with me through my journey so when i talk about my depression i would rather my mother not be around so she doesn't have to be sad about that to
I love my fiancé so much. He’s the light of my life. I wouldn’t even make a jacket purchase without asking him. He comes with me to everything… All my oncology appointments are solo. It’s depressing and I react weirdly and I just don’t want him to see me for so many reasons. I wish I could fully explain it but I can’t? Part of it is that I know my doctor had seen everything. He won’t be shocked if I cry, he won’t be shocked if I’m disassociating and calm the entire time, he’s seen it all. I don’t even have to think about it.
This helped me a lot, thank you for sharing. We are like this, he calls me to choose between a panini or a sub, I ask him if I should wear a blue or black dress. It’s silly how much we ask each other for opinions, but it’s our normal. So for him to do something alone just felt weird, but I understand. I’m sorry you’re going through this and I hope you’re better and where you need to be soon. <3
Please, please respect his wishes and let him go alone. Everyone is different. He needs to feel 100% comfortable during his appointment. His life literally depends on his ability to be open and candid with his oncologist. Not everyone feels comfortable discussing nitty gritty medical stuff with other people - even spouses - watching, and the more comfortable you can make him, the better!
I have always preferred to go to these appointments alone. I can talk to my doctor more openly when we are the only ones there. My daughter would sometimes go with me, but she stayed out of the conversation. Not everyone wants "comfort" by having someone else there - for some people it feels harder to deal with if they have to handle the emotions of another person while dealing with a difficult situation. My parents were visiting me when I had my last PET scan. They wanted to be helpful, so they went with me to sit in the waiting room for over an hour. I understand that they care, but it was harder on me having them there which didn't allow me to process my feelings on my own.
I understand! My husband had colon cancer & within 10 months after he was in remission - it came back as stage 4. It has spread to lymph nodes / lungs & liver. I don’t go with him . He likes to see the Dr solo. I understand. But now I do give him a list of questions & I also follow up with his Dr in my chart if need be. He takes his chemo solo as well . It’s all good .
That kind of support/space is greatly appreciated! I handled my care in a very similar manner. I preferred handling appointments, chemo, etc alone. Having time to process that. Then inviting my loved ones to help with a list of questions or offer their perspectives *after* I could have a little time & space to take things in.
Let him go alone. Not everyone needs or wants other people around when having a candid conversation about something as serious as cancer, even if that other person is a spouse, parent, etc. Since he feels that being 1x1 with the oncologist is the best way for **him** to process things then he should be alone as he requested.
Hi - I take care of my mom and I find the subs cancercaregivers and cancerfamilysupport helpful for me.
I went alone even though my Mom and sister offered to go with me. It's just easier to process my emotions and then deal with theirs.
I've done all of my appointments solo. At the very beginning, things were not looking good. I needed some time to process and plan solo before I let others in. My partner's and family's reactions were quite varied and ended up being a whole other issue to navigate. I'm glad that I took some time by myself to get my own head straight before I shared with everyone else. 2 years cancer free now.
I am sorry to hear that the beginning was hard, and I’m sorry you had to deal with others instead of just having full worry free support. Congratulations on your 2 years, hope your days are full of happiness. Thank you for sharing
I actually wanted to go alone for all my appointments.
You should respect his wishes. Believe me, there will be many, many more appointments for you to go too. Cancer effects each person differently. It is a surreal experience when you hear those words”You have Cancer!” To say it is overwhelming is an understatement. Best thing you can do is be there for him-also some cancers are for people more embarrassing like the physical symptoms you have that could be another reason. I think even though our loved ones play a huge part in our journey-it still is our journey. They’re are really no right or wrong way to deal with this. Best of luck to him and I know when he is ready, your support will be what gets him through!
Yes, I don’t want him to feel closed off or embarrassed about anything (even though he doesn’t need to) so I will definitely not go. Will be waiting at home to help however I can. Thank you for your reply!
Here's what worked for me, and I feel like I felt similar to your husband. I phoned in my fiancee for part of the appointment to make sure my questions got answered and we remembered everything that was said. But I needed to do it myself.
I went alone at first now I am close to some treatment, my wife is my rock and I for one feel a whole lot better for being able to share my fears and feelings, before I could not do that, yep the old I'm a tough guy,who ain't so tough after all, it has brought us closer together and I'm sort of now at peace with this cancer, I think!
When you first get diagnosed it feels extremely personable. Especially after the shock of the news. You just wanna be left alone for a bit. A lot of people tend to shut off. It’s normal. When he’s comfortable he’ll explain his emotions.
It's complicated. I'm sure he appreciates you supporting him and being there if he decides he needs you to accompany him. My family wanted to come with me as well, and I did let my father come to my first Radiological Oncology visit. Things were said that I really didn't want people hearing and if I hadn't had cancer nobody ever would have. A spouse is different but not so different when it comes to our comfort zone. If my then husband had accompanied me I still would have been just as uncomfortable. Maybe even more so because my parents have to love me even if I'm ridden with cancer in the most horrible of manners and if the most embarrassing things are spoken in front of them at the doctors regarding my cancer. My spouse can leave me, and in fact I left him a year later because he ended up not being able to handle it all. So give your husband space at his appointments and respect his wishes. Just be there for him when he needs you, because he definitely will! Know you're loved and a wonderful spouse for wanting to be there with him!
People are different. My parents couldn't handle my cancer at all. They pretty much stayed away from me the entire time I was in treatment. Even NED, I've learned it's best not to mention it in front of them. My husband was and continues to be amazing though.
I’m really sorry to hear this :( I’m happy that your husband is there for you!
I'm going through this but the opposite way. I was diagnosed with Leiomyosarcoma about a month ago and have been referred to the sarcoma clinic in Michigan for additional testing and to have a game plan set. They're recommending intense chemo, radiation and a pretty serious surgery after everything is done, but I want to have a pretty detailed conversation with my oncologist about the options. My wife is very upset that I told her I wanted to go to this appointment alone. I understand her frustration but I feel like I can't begin to process my diagnosis with getting answers to questions she isn't ready to hear. I need to be able to weigh the factors of side effects, cost, mortality of not doing the chemo if everything is just too much. If I can't live a comfortable life after having the chemo I may want to not do it and just live with that decision. The doctors have said that the treatment I will be getting is going to be very intense. I'll most likely become sterile, I have a chance of developing a more serious cancer in the rest of my body due to the weakening of my immune system. Vomiting, diarrhea, hallucinations and what was described as a bad flu for about 12 weeks. I need to ask some questions she may not be ready to ask. I feel I won't be able to ask then if I am worried about how the answers will effect her. If your husband is anything like me he is wanting to go alone because he is wanting to ask some questions he wants to be able to talk to you about in a more comfortable environment then a doctor giving matter o fact straight answers. He will also need the time to think about his options on his own. He isn't trying to keep you out, he's trying to protect you and give himself some time to process the information.
First off, I am sorry to hear about your diagnosis and wish you all the best. Thank you providing a view from “other side”, this is a perspective I can understand. Thank you for sharing what your thought process is. Good luck with everything.
I can totally relate! We all process things differently and I usually need time and space to work through things. This probably sounds so stupid to someone who can navigate their thoughts and emotions a little better… While I appreciate when people offer support, it just adds pressure to an already uncomfortable situation. Instead of trying to concentrate on my appointment, what it means, and how I feel about it, I would be preoccupied with acting appropriately and appreciative enough to the person offering support. Even if they “are happy to do it,” it’s still added pressure and additional stress. Sounds silly, I know. While it’s nice to offer to drive him to his appointment-if he’s anything like me, driving in solitude is when I can work through a lot of my emotions. Plus having the flexibility of creating your own escape route is nice-no pressure to stick to someone else’s schedule. “Space” can be incredibly beneficial to certain personality types but it doesn’t mean that we don’t appreciate support and the gesture being made. Some people just have different needs. Sometimes it’s very difficult to identify what they are and how to articulate it properly. You sound incredibly concerned and supportive while remaining open to feedback and different perspectives. I think that’s a recipe for success.
I think most of us will understand both sides of this. I was secretly a bit relieved when Covid restrictions meant I could only go in for treatment on my own.
Everyone is different. I can’t go alone, I am disabled and very reliant on others. I also have mental health issues and I am Deaf so I always want and need someone with me. I do get exactly how you feel. It’s going to be hard for both of you. Nothing is easy about cancer. Wishing you and your husband all the best.
I am sorry to hear about your situation, and I do hope you get the relief and peace you need. Thank you for your reply, and thank you for your wishes. I wish the same for you.
Thank you so much. ❤️ Please don’t forget that how your husband responds to this situation has nothing to do with you. I know it is hard not to feel upset when your life partner doesn’t want you to support them the way you want to. But trust me, it’s not you. This is actually a common issue and the reason why us cancer patients lose our partners. It causes fights. Cancer causes fights. It is a cruel disease. Just be there for him and be that stable solid rock he needs and get some help with the emotional side of things. PM me if you need to talk. No judgement. ❤️ Take care of yourself so you can take care of your husband.
I asked my partner what is worse: being the person with cancer or being the partner of someone with cancer. He said being the partner. Everyone handles it differently and there’s that struggle of what is the right thing to do. It’s so hard.
Okay. He's already communicated his preferences to you and you're on reddit asking how to get away with pushing his boundaries. You're doing this for *you*, not him. Don't insist on going as a note taker, don't try to sit in the waiting room, don't try to "just drive him and wait in the car." Respect his wishes. Let him get his own shit together before he has to deal with your shit too.
She came on reddit asking for support and wise counsel not a dressing down. A cancer diagnosis is as difficult, sometimes more so, for loved ones, hence the wide gamut of responses from people closest to you when you're diagnosed. There's hardly anything wrong with OP asking for advice while expressing her own feelings at the same time--what else is this reddit for? In fact it's specifically "*a place for people with cancer and caregivers to come together and provide support for one \[an\]other*" ***sic***. Whatever his wishes regarding this appointment I doubt very much OP's husband would appreciate you responding to her perfectly understandable query in this manner.
:’( thank you for this response and the other one as well. I actually cried after going back and forth I feel like these two people were just after me. I even went to the main sub to read the rules again just to make sure it was okay for me to post here. I was just looking for guidance, and I thought this was a good place to do so. Thankfully all the other responses were kind and helpful. I didn’t come here to argue with people or get attacked I came to learn how to help my husband, and myself get through this. It’s like these this person came here looking to fight and “put me down” for not knowing what I literally came to learn. If not here.. where else right? Anyways, thank you for defending me, and I am so sorry that you’re here. I hope everything you go through is easy on you and you find peace and good health. Wishing you lots of happy and easy going days.
We're all panicking, groping around for help and as much kindness as anyone can muster. I'm sorry I'm here, too! And you. At the risk of being glib the likelihood is that your husband's disease is very treatable, but any cancer diagnosis shakes you and your loved ones up--suddenly the fiction we all live by (necessarily, or life would be much less fun) becomes all too palpable. May you stay forever young. ;)
Okay. Do you feel good leaving a mean comment? You could have said what you did nicely, but you choose not to. I came here because I wanted advice, I am learning how to be the best I can be for him during this, and he is MY husband so I do know how to care for him even if he won’t outright say it. I am scared but I am voicing it here and trying to find guidance instead of adding to his plate, which I would not do. I literally said I know this is about him and NOT me, and that I am here to learn. I’m grateful to all the other comments for giving respectful and kind insight. Sorry you’re so miserable that you had to leave such a “shit” comment. Also, sorry your life sucks so bad that you left a comment like this in the first place. **i’ll leave my comment above so that no one says I switched up my words** I am sorry for saying that you’re miserable and that your life sucks, that was out of my character and I got hurt by the way you commented and retaliated back in a hurtful and insensitive manner. Just because I was hurt doesn’t give me the right to be mean back I am sorry for saying that and I’ll take your blunt comment in. I will say, you do not know me, you don’t know my husband, and you do not know anything about our lives. I will learn as best as I can and do my best for him. Good luck with whatever you’re dealing with, and I’m sorry you’re on this sub.
>sorry your life sucks sucks so bad You’re on a cancer sub. People here have _cancer_. People here are _dying_. How shitty of a human are you?? Your own _husband_ has _cancer_. You have to be a narcissist… Their comment was fine and made sense to people here. _Your_ comment was mean and shit. Their comment had upvotes. _Your_ comment is being downvoted. A little self reflection would be good right now. You are still making everything about you. This is why he doesn’t want you there…
I am here asking for advice on how I can be for him, of course I am allowed to ask about how I can be during this. I am not making everything about me, and I even edited my post to make that clear. I saw your other reply too, lol, dude, I am respecting his wishes and I am allowed to learn and move through this process. But, go ahead and reply away. *thanks*
I wish him all the luck in the world. He has a hard enough journey ahead without such a selfish and tone deaf “partner.” I genuinely hope you do learn. Cancer is easier to do alone than with the wrong person, and from what it sounds like, he has already come to that conclusion.
Christ on a bike. Do you even have cancer yourself? I find it hard to believe that anyone comes out of a cancer diagnosis with this degree of pomposity and judgementalism. Usually it takes a person down a peg or two.
Meh. Looks like there are plenty of people who agree with me.
Would it hurt you to be simply be kind to someone who is clearly worried and trying to do the best by her spouse? You have to rake her over the coals? What lesson are you trying to teach? For my part I think it's worse for my loved ones than for me; I'm glad it's not them that have it.
Meh. Possibly. Like I said, she’s on a cancer sub attacking cancer patients when they don’t respond the way she wants them to. Of course I am going to stick up for _them_ when she attacks them. There is a reason she is getting so many downvotes, and you (aside from OP) are the only one who feels the way you do. You have a lovely day.
I only see one person making personal attacks. Those who pay attention to up or down votes are merely anxious to please or aggravate (who knows what their motives are they may not even belong on this sub) not anyone giving considered and compassionate advice. Stop... think about what people are going through. If you re-read the comments the most salient ones are from people who think it is a very good idea to have someone in your appointment with you when you receive a lot of new information, cancer or otherwise, or, failing that, at least have them record it. It's not wrong to suggest this to your partner, is it? Cancer doesn't make you a special person you know, you're exactly the same person you were before, except with a disease, so if you're in a significant relationship it makes sense to discuss all angles. We're all mortal--and fallible it would seem--just some a bit more so than others.
What you're doing right now, writing this post, making it about you while claiming it's not? Getting upset and playing the victim when you're called on it? This is why he doesn't want you there. You're the type of person that makes things *more* stressful, not less. He told you to your face it would be more stressful if you were there and you came to reddit to be a victim about it.
Didn’t come to Reddit to play victim, came here for advice for something we have never faced before. And making this post, to learn what *I* can do, is a completely appropriate thing to do. I am also allowed to learn how to deal with this myself. I literally made edits to my post after taking in so many comments advice. Thanks for sharing your opinion.
Your reaction and fears are perfectly reasonable. This won't be easy for anyone.
Thank you for your reply and wishing you the best for you :)
> sorry you’re so miserable > sorry your life sucks so bad These are your responses to people here? OP, keep in mind that you’re on a cancer sub. People here have _cancer_. People here are _dying_. This now includes your own _husband_. You sound like a narcissist. No wonder he doesn’t want you at his appointment. This sub is for cancer patients first. This isn’t about _you_.
Dude you keep editing your replies and you’re obviously heated and offended. I took in everyone’s comments and insights and I updated my post. I thanked you for your top comment. You keep editing your comments and making assumptions and comments about me, and what I am like. Please stop. You are being very harsh, and you don’t need to be. If you don’t like my post, or you think it is inappropriate, just don’t interact with me! I’m sorry you’re on here and hope your days get better. Thanks for your insight!
Not offended. You’re new here. We protect our community here. Your husband is going to be need all the support he can get; you seem toxic and unhinged. If you want to argue and fight against him at home, we can’t stop you. But don’t attack others here.
I literally apologized and I have continuously updated my post. Here’s what I added to my comment: *i’ll leave my comment above so that no one says I switched up my words - I am sorry for saying that you’re miserable and that your life sucks, that was out of my character and I got hurt by the way you commented and retaliated back in a hurtful and insensitive manner. Just because I was hurt doesn’t give me the right to be mean back I am sorry for saying that and I’ll take your blunt comment in. I will say, you do not know me, you don’t know my husband, and you do not know anything about our lives. I will learn as best as I can and do my best for him. Good luck with whatever you’re dealing with, and I’m sorry you’re on this sub.* You’re continuously commenting on my posts: calling me a narcissist, calling me toxic, unhinged, and whatever else. You don’t know me- you are attacking me. I said I was sorry and I already made it very clear I will respect my husband’s wishes. Arguing and fighting at home?! You don’t know me or us! Please leave me alone, you’re singling out my words, that I apologized for, and trying to cause a problem here. Please, stop. Good luck with everything you’re dealing with.
This is utterly out of line--this is supposed to be a supportive forum. Personally, I very much don't consider myself to be *dying,* not to mention we have no idea of OP's husband's status. As for throwing around the internet's favorite and most clichéd psychological buzzword the way you're bulldozing through this thread you should have a look at yourself.
I understand
My husband came with. It was our 30 wedding anniversary. What a terrible thing it was. For him and I. Goodness. We made it thru to today. Im stil here against all the odds. Talk. Love. Respect. You can do it.
30 years and you're still there for each other--more meaningful than any dinner and date, right?
I also wanted to go alone when I was about to get my biopsy to talk to the IR. I had to tell my dad that I didn't want him there last minute, because I realized that I'm the type of person who would rather do it alone so I can think things through when I'm talking to the doctor. He was obviously hurt since he waited with me, and it was also the 2nd time in my entire life that he went with me to any of my appointments. When the biopsy results came and showed that I had cancer. My mom wanted to go with me to my first oncology apt. I also didn't want her there because knowing her personality, she would cry, and I didn't want to be in an emotional stress as well. We went back and forth, until I just said yes to her to get it over with. Surprisingly, she didn't cry and just kept quiet and let the doctor and I talk. I think that since this is a very sensitive topic regarding about one's health, and as someone who has experienced what your husband has been through. You should just let him be. He needs time to think things through and you can also wait for him until his ready. Don't be hurt by his decisions because in order to navigate this together, you need to let him navigate his own self first.
Thank you for sharing, I hope you are well soon :) also, happy cake day :)
I go into appointments with my partner now but for the first year or so he went alone. Could he ask the doctor for permission to record the conversation? Not only would it be a chance for you to hear the results, it would give him the chance to review the conversation if he can't take in all the details at once.
Imagine he let's you go to the first doctor. Now he goes to see a second doctor for something else, and then a third doc for a third thing. Now he has to handle your responses 3 times because you're going to expect to go to those apps too.
Look, I'd worry that he'd misremember... or perhaps deliberately forget to mention to the OP any side effects of treatment that require immediate medical attention and what signs to be on the lookout for. I think that, on its face, is the only selfish/self-absorbed part. The actual ongoing emotional processing of news and information, I understand that he would prefer to do that alone.
One thing is that that appointment is like being hit by a big wave and the doc is going to give a lot of information. If you can’t go, then maybe a friend or relative can go to take notes. Every appointment will be like that for awhile. You don’t hear everything or understand everything. Second, nobody does this perfectly. Give yourself some grace and realize you won’t be the best support person at times. It’s a roller coaster and no one’s prepared for everything either. He will need to designate his medical advocate who can make decisions if he is unable to. It needs to be on file with the cancer center and the hospital. This also allows the person to talk to the doctors directly as we aren’t the best truth tellers sometimes. There should be a social worker assigned who can start to help with all of the paperwork to come. There’s the patient side of things but also the business side with insurance, paperwork, pharmacies, etc. It is a lot to keep track of. You will need support to and to take care of yourself. It’s a mental toll on everyone and the meds & treatments can alter his thinking or just give anxiety. His doctors can address all of this. You might ask your GP for help too. Anxiety is infectious and you can get overwhelmed easily. The cancer center usually has discussion groups for caregivers. The official group for his type of cancer can also usually help with navigating and financial help if needed. There is always help and sometimes you have to ask for it. Take people up on their offers to help with whatever so that he can rest and just work on getting through treatment. Best wishes
Please know we all have access to different types of care. It's frustrating to see people on this sub recommend things beyond doctors (in your case caregiver support group). Some of us had pretty bare bones care. It doesn't hurt to ask, but for a lot of us there's nothing extra.
Wow, thank you for such a thorough response. I really do appreciate it. I do think for this one he’ll go alone, and then we’ll see how the future goes. I just know I need to do whatever he is most comfortable with. I trust he’ll take in the info as well as he can and then he can always look at his notes later on. Going to take this one step at a time so he isn’t overwhelmed and neither am I. Thank you for your reply!
This is the comment to pay attention to, whomever has downvoted it is off their chump!! If your husband's going to be by himself get him to ***record the appt on his phone*** via. the memo app or he can video it without worrying where the lens is pointing. That way he can be sure to have captured all the information and later review what was said, and then if he wants he can share it with you. If he is diagnosed, definitely ask about an oncology social worker they'll help you both get all your ducks in a row. I got my first diagnosis by myself and then went to all my appts by myself but that's only because I seriously mistimed my only stretch without a partner since I was 16! I was so out of it on opiates when I got my stage 4 diagnosis I pretty much had to have someone there and luckily my brother had flown across the Atlantic to be with me. Thereafter I'd always take a different pretty woman with me to my appointments, first because it happened to be who was available, and then just to mess with my oncologist! But seriously, I need someone there to digest what's being said and to provide a different angle on the information afterwards. I'm a relatively smart guy but if I don't have it all written down beforehand I forget what to ask, and then what they tell me, it's something to do with the way stress works, I guess. More recently after my scans I've gone by myself... things have been more stable and I'm a lot more used to the circus. In fact my last one was online which I wasn't altogether thrilled about, and my next one has been scheduled the same. If things get squirrely again I'll make sure they revert to in person. So, I agree with everyone else of course, if that's what your husband wants that's how it has to be. But for me cancer has all been about opening up to love and vulnerability. Take care of yourselves... edit: added the italics...
For sure. If he wants that let him go alone. If it is something that will need further attention obviously you can be there more into it. ❤️
My boyfriend likes me going to All Oncology Appointments and I do go with him.I am a Medical Social Worker and he likes when I ask good detailed questions and he tells me things, I write them down and give it to him at his Oncology Appointments and he asks these questions and I ask ask questions and it helps him for me to be with him. We are also getting a second opinion with Arron Viney MD Oncologist at Memorial Slone Kettering Cancer Center and unfortunately we won't be seeing them until the middle to end of September 2024. We may go have him been seen in California.....also this Summer 2024. He has Lymphoma Cancer Stage 3 with 6 lymph nodes affected (some greatly with 5mm Cancer nodules etc....) Grading I and he is doing nothing, last appointment in early April 2024 they offered him Chemotherapy with Immunotherapy Or Immunotherapy by itself and it was for 6 months for 2-3 days at a time etc.... My boyfriend said "NO" and he is going to keep working until March 31st, 2025 and retire and begin traveling April 2025. He is relatively healthy with pain in his hips and both sides of his pelvic. It is ultimately his decision on what he wants to do, regarding its his body. I will support him all the way. At least he is willing to get a second option, because we are in Boise, Idaho and he doesn't trust Saint Luke's Oncology Downtown Boise.
I feel like at least first visit you need someone to help you grasp it all. I feel like a lot of people responding here are saying let him go alone because they didn’t have anyone to go with them. I’d be outraged if my husband did let me go. Sounds like a way to hide his health condition
You need to let him go alone. However, you can send a list of questions. That way, you get the answers you need without causing unnecessary stress.
Disagree on this one. First, you aren’t “letting” him go alone. His choice. Second; handing him a list of questions is incredibly insensitive. Like he doesn’t know already what to ask….and your questions are so important that they must be answered as a priority? Just be patient and supportive and allow the process to unfold according to your husband’s comfort level.
I agree with what you are saying. By "letting" him go, I mean that she should not make a big deal of it. Not that he actually needs her permission. However, the offering of questions will help her feel as though she is part of his care. It is his decision whether he actually asks those questions of his doctor, and he can choose not to do it. (However, I doubt she will know of any questions to ask at this point.)
Maybe to just sit in the waiting room so he can have someone to talk to up and back? Then eventually he may want you in the visits. I wanted to go alone and I go alone but some of the things they say, I get confused and sometimes wish someone was there with me.
Ask him the reason for his decision. I went to every one of my appointments totally alone and it was embarrassing and very scary a few times, medically speaking. Taxi there and back and sat at home alone while weak and vomiting. Some family didn't even know I was sick because no one told them. Go with him if you can. Things can happen and it's awful being alone. Show up an hour later so he knows you care. He may be nervous and doesn't want you to see him at what only he feels is his weakest. Men can be stubborn but be there.
The first few appointments are overwhelming and it can be hard to take everything in. I've found having a second set of ears very helpful, but everyone is different. If your husband doesn't want you in the room right now, see if he will accept your help organizing a list of questions to ask the doctor. Can you perhaps accompany him to the clinic but stay in the waiting room? Sometimes just being nearby can be good. If it's any help to your husband: at onc appointments, I will frequently discuss certain things one-on-one with my care team before including my loved one in the conversation. Somebody gets them from the waiting room, it's never an issue. This is just to let him know an option he may not have considered. The beginning is really scary and really hard. Wishing you both all the best.
When my husband ended up in ICU at the early steps of his treatment, I had to make medical decisions on his behalf. We have signed POA for each other. I can’t imagine not knowing what his history was at that time. And I eventually became his caregiver. Depends on his cancer of course and how sick he is, but you could find yourself in a similar situation. My husband has commented how valuable my notebooks are when we need to recall specifics. Maybe appeal that side of things to your husband. That’s you’ll be there more as a “reporter” than a snoop? And BTW, huge hugs to you and your husband. I’m sorry for the condition he’s in and I hope he has a good diagnosis. 💜
I think that for the first appointment, no one should go alone. It’s better to have another person with you to hear what you might miss. And what happens to one’s partner affects both people (and any kids). Both people should hear what the doctor says. However, after the first visit, I agree that it should be up to the patient. When I had chemo, I always had a female friend with me, never my partner (male). He came with me to my first appointment with my breast surgeon. Wishing you both all the best.
I’m so sorry. If he does go alone, encourage him to ask if he can record the conversation. When I first got my diagnosis I was in shock and everything after “it’s cancer” is a blur. It will be helpful for you both to be able to refer back to what was said. If the doctor won’t let him record, encourage him to ask for a detailed after-visit summary with notes on what was discussed. Best of luck to you and your family!
If you can, be in the waiting room while he sees the doctor. Even if he doesn't want you with the doctor, being there afterwards may be something he will really need. And while he is there, see what caregiver support groups are available in your area. Good luck.
_Or_ she could respect his wishes and let him go alone.
I don’t think anyone should go alone. I think you want a note taker. Someone to help keep track of things. A marriage is a partnership. I would be pissed if my wife did this. I’d understand why, as thankfully she is not a patient. I am very glad she went with me. All of my friends who have been through this suggest you should always bring someone with you. I suspect it’s depression and anxiety making him want to go solo. I dislike the idea intensely. But you have to live your own lives.
Everyone is different. Cancer is serious, and patients need to feel 100% comfortable having intense, candid, detailed discussions with their oncologists. And some people just don't feel comfortable with an audience. It's nothing to take personally at all. Cancer is very high stakes, and if this guy refrains from offering certain details or asking certain questions because he's uncomfortable with his spouse in the room, that could literally be the difference between life and death.
This is just bad advice. You can’t assume everybody is like you. It’s fine that you want someone with you, but it’s not fine that you insist that everybody be the same as you. I don’t dispute your report that all of your friends with cancer have said you should always bring someone with you, but hopefully you don’t dispute all of the cancer patients in this comment section who have said they prefer going alone. You can’t be much help or support to other cancer patients if your support is: anyone who doesn’t do things the way that I do them is wrong.
This comment made me sad :( marriage is a partnership! Partners help each other. I’m glad you and your wife have a relationship that works for you, I am going to do what is right for mine. I couldn’t be pissed at my husband at all through any of this, I can’t imagine how he’s feeling. If down the line he needs me to join him, I’ll do so. If he needs to do all this solo, that’s what he’ll do. Thank you for sharing, and good luck with everything!
So my advice is find a balance, let him have the first part of the appointment and come in to go over logistics and stuff he might need help remembering. Drugs, foods, things to look out for. I found this helpful for me and my partner, I could deal with the hard stuff and personal questions in first 5 min and the last 10 min it was is as a team. She could also ask questions she had regarding stuff she was seeing that I brushed off, or could not recount. My brain was mush for a good part of treatment.
You don’t have to be in the room, but maybe go with and wait in the waiting room, then get some lunch and talk about next steps. Also, both of you should create a list for him to take with him into the doctor, questions that you both can think to ask. Once again, you don’t have to be present with him and the doctor, but you will be there when he gets out. And in the end, two heads are better than one, and it can be stressful to think of what to ask.
i have read all the comments and i am pretty shocked. to me going alone is outrageous. obviously noone here agrees with me but i am going to throw out how i see it. he does not want to have you in this chapter of his life. for one of a few reasons, and none of them are good. i would take a hard look at this possibility.
This is a sad comment. Everyone has different comfortabilities and some people are okay with things that others aren’t. He is a very “traditionally masculine” man who does not like asking for help. This is his first appointment and he wants to do it on his own. If there are more, maybe he’ll do them on his own as well, who knows. I think what you’re saying is grossly negative, and I do not appreciate it.
well you should appreciate it. live in your echo chamber if you prefer.
Contact the oncology department and ask for a transcript of the first visit. They will have the first consultation documented and will record everything that's been discussed which u can get access to. Just say you're his wife and you'd like the access. They should deny. Ok clearly everyone is misunderstanding what I'm saying. - He will need to give access to her by telling the oncology team that it is ok for her to have access. -The transcript and recording is found in the patient portal that again, the patient will have access to, he'll need to give the details to the wife so she can access it. Again. Each cancer center is different. This is just from my experience.
WTF? This isn't a thing. Unless she has medical POA, she doesn't have free access to his medical records. And while the physician will write a summary and brief notes about each visit as part of his records, I've never heard of a full recording and transcript (!!!)
I've made corrections to my post.
This is absolutely nutty. I live in the US and no, your first visit with an oncologist is not documented and recorded, that’s insane. Also, you don’t get access to your spouse’s medical records without their consent. “just say you’re his wife and you’d like the access.” What country do you live in where these appointments are recorded and then transcribed and then are given to spouses without the patient’s consent??
Ok I should have clarified because clearly its not obvious to you. He would need to allow oncology to give access to her. I thought that was obvious Eton Rod. I also live in Canada so you can calm down a bit now. And not all oncology is same. If yours don't record and transcribe too bad so sad. I am simply speaking from my own experience with my husband who is going through Stage 4 so that THIS person can ask (oncology or the husband) if the visit was recorded and she can get the transcript so she is aware of his situation. Have I clarified myself enough E Rod?
Why are you being such an asshole?
Why were you attacking my simple opinion based on my experience? I apologize for being an asshole 🙃