I belong to a Facebook page called "Caring for Husband's with Cancer". It's really big now, international and has over 1000 members. The reason for this post is that more and more women are posting about how abusive their husbands are (ususally emotionally and verbally abusive.) There have been three women in the past week posting that they can't take the abuse anymore and want to leave their husbands. One is planning to leave (her husband was abusive before his cancer) and two feel too guilty because of their husband's cancer and can't afford it.
It this something other people have experienced? My husband was diagnosed with stage 4 Follicular Lymphoma in 2011 and did not become abusive at all, but he is able to express his painful emotions in a contructive way. Is it because these men only know how to express pain and fear as anger? Sometimes it is the medication they are on, and once their Doctors are made aware of the situation and a different medication is prescribed they become pleasant again. Sometimes the relationships are not great before the diagnosis, and obviously cancer makes everything worse. Sometimes it comes out of the blue, and women who are stressed out of their brains trying to care for their husbands, work, manage finances and in some cases raise children as well have to deal with being abused on top of it.
I'm wondering if counselling should be prescribed as part of cancer treatment to avoid this? My cousin became a quadraplegic and counselling was as much a part of his rehabilitation as physiotheray- I'm wondering if it should be the same for cancer. Does anyone have any thoughts on this?
I have! Not physical abuse and not even emotional abuse at all. BUT YESSSS to a major shift in demeanor, anger, etc.
We’ve been together a very long time- married 19 years- and he’s never raised his voice at me really. If he did he had good reason but I can’t remeber a time when he has. He’s always super loving and patient. He treats me like a queen! We have not ever had marital issues or even disagreed very much. When we do, we talk it Kirby like adults. He’s always respectful, happy, and forever pursuing my heart. Still very much like newlyweds and I couldn’t ask for a better man, husband, and dad.
But we are ending cycle 2, about to begin cycle 3 of chemo (Bleomycin, Cisplatin, and Etoposidex along with Neupogen most weeks). He gets a bag of steroid before some of the chemos go in (he gets chemo 18 days of the 28 day cycle and over half of those he gets a big old dose of steroid with his pre-meds first).
Some days he doesn’t need get a steroid and of course he has some days off from chemo all together (but not many, his cycles are crazy!). He has what they warned me he would have- chemo and steroid rage. He’s not himself at all. Even on good days- he’s quiet and withdrawn (not like him at all). But as of this week he has become very irritable and angry. In all over our lives together, I’ve never seen the man get truly grumpy. Ever. Until now. Almost mean spirited.
It’s actually why I found this support group to begin with. I was googling “chemo rage”. I can deal with allllll the puke and side effects but this.....This tears me apart. I know it’s the chemo and not him and it certainly isn’t at a level that alarms or scares me at all, but it’s been also totally not how he normally is. He has an issue with everything I say and do (or anyone says and does). It’s definitely not exclusive to just me. He’s being rude and angry with everyone. Nothing could more opposite of how he usually is. He has literally never hurt my feelings before and this week he did. And he didn’t seem to care that he did so, when normally he can’t stand to see me upset ever. And he’s never the cause of my tears unless they are happy ones. Until this week. It’s like he’s grown cold and jaded out of the blue and very sudden.
If he wasn’t in chemo, I’d be feeling out but they did warn me this was likely coming. I kept laughing at them saying it had not and I doubted it would because he’s so sweet, always- no matter what. And he truly is, but I was wrong. Even he is not immune to this chemo rage. They have explained to me that this is common and even gave me pamphlet about “chemo and steroid rage and personality changes”. I get it, but I don’t know how to cope with it. I have no intention of leaving or letting this change our marriage at all. He cannot help it and I know this is not who he ever is at all. He’s just very, very grumpy and unhappy.
It doesn’t cross any line and some people are just this way normally. But my sweet husband isn’t. It’s hurting my heart so much and he can’t see it. It’s like he’s living in some alternate universe and I don’t recognize him at all and he can’t see what’s going on. I realize it will go away and he will go back to normal when this is over, but I don’t know how to deal with it until then.
Do I ignore it (that’s really hard to do when you are in that moment and are still a human who feels hurt by what he’s saying or how he’s acting). Do you address it or let it go? What if the patient doesn’t see it? Do you tell the doctor if it isn’t any real harm/threat? (it’s not physical at all, that’s actually quite laughable to think about because he’s so gentle. He has never raised his voice to me on all these years much less his hand). It’s not even abuse mentally. It’s not hate or tearing me down or anything like that. It’s just he gets so irritated about everything and he never has anything good to say anymore. And if I express concern about this to him he gets really hurt and upset, and then says he’s the same as he always has been (he is NOT- complete opposite).
Any tips and reassuring me it is just the meds (I know it is but reassuring words from those who have been there helps a lot) would be fantastic because it’s been a really hard few days in an already incredibly hard journey. I know he’s not on board to take any additional meds, especially those designed for this particular thing, and I get that. They’re hard to come off of and as long as it doesn’t get worse or become agresive, I don’t feel the need to ask him to do that. It’s mainky a struggle within myself for me to let it go and be strong enough to ignore it. I don’t need to snap back or letnir upset me. And that’s quite the challenge for me.
More importantly, what can be done about it? There are about 1100 members of an international facebook page I belong to - 'Caring for husbands with Cancer'-and I reckon about 30 of them at any one time are dealing with significant abuse, and they're just the ones that post about it. Only about 2 have left their husbands, and the catalyst has been physical abuse of their children. Is there any way counselling can be made a standard part of treatment for people diagnosed with cancer? (I don't want to say this is an issue only with male cancer patients)
Also, are there any safeguards put in place when people are prescribed medications known to cause aggression, such as steriods? 'Chemo rage' is a phenomenan known to Oncologists, but what protocols are put in place to ensure the safety and comfort of people sharing a house with the 'rager'?
I would like to see the Cancer Council advocate for carers in this regard, and any suggestions you may have about what members of the public can do to help would be fantastic. I really appreciate the service the Cancer Council provides. (I'm also aware that your organisation is the cancer council of NSW- is there a national organisation we can recruit as well?)
This was written by a member of "Caring for husbands with Cancer" just yesterday (shared with permission)
OK ladies, I am getting overwhelmed with all the ‘mean’ cancer [patients] out there. I think we need a Carers Protection Society.
Honestly, I think it is time we spoke up collectively about this, instead of suffering silently behind closed doors, choking on our tears alone.
We are kind, compassion, caring people. Their situations are damn tough, but it is not OK to be treated badly because of their suffering.
Just because they are having a crappy time, a most nerve shattering experience, doesn’t give them the right to abuse us who are giving up nearly everything just to help them stay alive.
Time to take some action ladies, the line has to be drawn somewhere.
I agree. I tried to find help for the horrible way my husband was treating me during his chemotherapy—constant financial and emotional abuse, criticism, yelling about everything I did, moving in his family into our home then elevating them above me, telling me he had brought them here to help but then yelling at me for treating them like servants even though I asked them for nothing and never wanted hem here in the first place. It was a nightmare. He was already abusive before the diagnosis and I had been making plans to leave but then of course the diagnosis changed everything. He would scream at me, trap me in a room and forbid me to leave the house, he even grabbed my arm hard enough to leave bruises and screamed at me for asking him too many times if he was ok. He denies all of it. It seemed like he took his diagnosis as a green light to just do whatever he wanted and no one would bat and eye, and that is exactly what happened. I tried to find ways to address it, but there were very few resources. I tried to join an online support group for caregivers but was actually rejected because I reported the abuse and they said it would be “too distracting for the other members.” Talked to my husbands social worker and she said she couldn’t speak to me without him present, which is not what you want to do when reporting an abusive situation. He forbade me to talk to his doctors. I tried to talk to the other oncology psychiatrists but they said they wouldn’t see me because they wanted to save the space for Actual cancer patients. Tried to use the mental health facilities at the hospital where he was getting treatment and they weren’t even covered by our insurance. I even went to a counselor with him, even though that is not what you are supposed to do with abusive spouses—I was just completely out of options. That didn’t help either, as the counselor just told me I need to make sure he doesn’t experience stress and made it out like he was some huge hero just for showing up—immediately after we left he would start in on me again. I have my own therapist but she is so out of her depth as to understanding the delicacy of the situation. There really needs to be some resources for caregivers, the only solace I could find after a while was drinking alone in the garage with my phone switched off. And I really really tried to find functional ways to cope.
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