Do they have to be so selfish?

Hi , I really will be honest I am  carer of someone with cancer and have no real advice but could imagine if it was the other way around in my relationship I would be selfish and unbelievably nasty but I feel for you and sm thinking and hoping things get better x

Dear Pogo and everyone else who is in a similar situation,,

I am sorry that you are finding yourselves in this difficult situation. I completely understand how unwanted and unloved your loved ones make you feel with their behaviours.

How would introducing a little bit of space into the relationship work? So, for example, could you take up running or walking, even if it is only for a short time on your own each day, could you join a support group in your area for carers, could you talk to friends who would be willing to go for a a coffee or a drink and listen to you?

I think that, when people are so sick, they often don't think of others any longer and how others might feel when they react or behave in a certain way and sometimes they simply do no longer have the energy to engage in any way emotionally. And, while it is good to have some understanding for that, I think we also have to know our limits. But, instead of walking away from them and the situation, perhaps there is a way of finding support yourselves so that when you return to the side of your loved one you have more resilience again. This is why I am suggesting the above.

I found, in my own journey, that I got annoyed with my husband, overwhelmed, frustrated and when I needed him to say "I love you" or "I appreciate what you are doing for me" those were times when I hadn't taken any time out for myself for a while and when I was therefore running very low on energy myself.But after even a little bit of time on my own or with understanding friends I usually felt better able to cope again.

Love, Mel.

Evening all, just tucked husband up in bed.  The steroids have been reduced and  he is much better . Tells me he loves me every night now. I am still treading softly but  not on edge so much. Thinking of you all. Carole 

i thought i'd add another "you're not alone" "it's happening to us too" voice to this discussion.

i also thought i'd point out that all the social workers (therapists) i've worked with during this process have told me that in the moment, being mean is *not* a choice for them. it just happens. they lash out and attack and say horrible things. some patients say later that they recall the interaction and don't know why they were being mean. some patients have no memory of being mean. some have watched video recordings of interactions later and not only have no memory of the interactions but burst into tears seeing how mean they were. that is: they had no choice in that moment.

several of the oncology social workers i work with call this horribleness "cancer's dirty little secret". yeah, these suddenly mean outbursts are *so common* among cancer patients that it's pretty much par for the course! these therapists say that few people know about this mean-streak personality change until they're in the thick of it. i've read lots of people who describe it as a personality transplant. some people say that their loved ones experience magnified or intensified versions of existing negative personality traits. (that is, someone who was formerly a slight micromanager becomes an intensely vicious and mean micromanager. welcome to my life!) before the treatment began, i could say "can i run any errands for you on my way over" and she took it as basic human kindness. but after starting chemo, that offer was taken as an offensive insult to her. she actually accused me of insinuating that she was incapable of running her own errands and she told me to stop asking.

the patient in my life is my BFF. she has no family & is an introvert with no other close friends. so i'm truly IT for her in terms of a social life and support. on some chemo drugs her personality is much like her old self. but on most chemo drugs she is unbearably angry, mean, and downright vicious. i mean to the point that i've been afraid for my personal safety. in any other circumstance, there is NO way i'd tolerate this sort of treatment. but her illness is terminal and the end is near and i would hate myself if i walked away from her at this point. but it truly is hell.

i'm finding that i need lots of support from other caregivers and from a couple different oncology social workers in order to get ideas about how to navigate the landmines present in every interaction with my loved one. the extremely negative emotions and anger pop up from things i can't predict and i've had trouble figuring it out on my own. i also have difficulty knowing what to say and how to offer help. it's been quite helpful for me to work with an expert who has helped hundreds of patients and loved ones through this. my conversations with therapists who have years of experience with *oncology patients* and their carers have been the most helpful because they know how this disease and its treatments differ from other diseases and treatments. the types of cognitive changes they've told me about are very similar to certain types of dementia that result in the patient's most negative personality traits coming to the forefront and the nice stuff getting lost.

there is a little bit of useful, general info online, such as https://www.cancer.net/navigating-cancer-care/side-effects/mental-confusion-or-delirium ? but most of the useful info i've gotten has been on forums on a variety of websites for caregivers and my in-person appointments with oncology therapists / social workers.

FWIW, my understanding is that most patients' personalities do return for good after all treatment ends. but there are some patients whose personalities are changed forever. so your OH might return to being her cheery self again after she's done with treatment. but it wouldn't happen overnight.

Hi there,

I feel for you. My husband is coming up for 2 years post treatment and it has been very up and down. There have been times of intense love and times of intense frustration and despair. He has been given all clears so far which is brilliant and he seemed to be recovering well until a couple of months ago when he got some painful ulcers and a lump on his tongue. He is convinced the cancer is coming back - he’s been checked several times and given reassurance but after a few days he’s worried again. 

He has not been nasty or angry to me or picked on me - but - in  the past few weeks he has been speaking in a very over-emphatic, negative-sounding way about most things. He doesn’t sound calm or normal, but aggressive,  even when the content of what he says is neutral. 

I am quite a  sharp person myself so have consciously tried to make my own tone very calm and quiet, whilst still being assertive.  He has responded well to this, is already calmer and I hope he will calm down further.

However, stiffens when I hug or kiss him and rarely says anything nice or appreciative to me. 

I asked him if he doesn’t love me any more and he says he does, he says it is just that he is in pain pretty much constantly and worried the cancer will come back. 

This started a few a few weeks ago when his consultant said he wouldn’t improve much from his current situation, he found this hard to hear as he is in a lot of discomfort and had been hoping for further improvement, plus as I said, he is afraid it will come back. 

I’m sorry, I don’t have any answers for what you, I or others are going through. It’s pretty hard to make so much effort and feel you are not getting anything back. 

All I can think is how I might feel in his situation and I think I might be the same as him. I’ve been very preoccupied in the past over much less - for example over work problems, and in hindsight I can see I was very self absorbed, 

I can see how they might feel we don’t understand what they are going through and get frustrated and angry about that. I’m just hoping this will right itself and it’s a phase to pass through. 

When the radiotherapy treatment was at its height I kept reminding him it was temporary and worth it to persevere to come out the other side. I try to think of his attitude as being like that - part of the whole process. At this stage I’m just concentrating on my own attitude and behaviour rather than trying to change his. My hope is that positive change will happen for him soon. 

Sorry, a long ramble, but you are not alone.