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How to support my husband through my treatment?

Momentary
Posts: 5
Joined: Mar 2019

I hope its ok that i posted this here - Im not a caregiver but need advice from caregivers. 

My husband's first wife died young of breast cancer. Last week I was diagnosed with lymphoma. All I could say when we heard the news was "I am so sorry to do this to you".

I am very positive that I will be just fine (maybe a bit of denial!) but afaik lymphoma can be very treatable. It probably didn't help that when we discovered the lump and during the wait for the biopsy results I was very positive saying that I was sure it was nothing. My husband naturally having gone through everything he has gone through with his first wife was not optimistic and dreaded the worst. 

My biggest fear has arrived in that my husband of nearly 3 years is having to go through being a cancer caregiver again. I don't know how to make him feel better and I am conscious that I may not have all the tools to know what he needs. I am very good at putting on a brave face and smiling and seeing the sunny side of things, but I don't know if this attitude is helpful to him.  He needs to be able to vent and express himself and maybe my 'no worries' attitude might give him the impression that he can't be sad or upset.

I told him yesterday that I am mindful that going through something like this might be hard on a relationship and was there anything he thought that we needed to look out for. He said he felt it would be important for him to try to make it to many of my medical appointments. I asked him what I could do to support him, and he didn't know. I realised after that it would've been very hard for him to answer that and would therefore need to find another way to find out.

I love him so much and I know its not my fault that I have cancer but its important to me to be able to try and make this process easier for my husband. 

Thank you for your time!

Catholic's picture
Catholic
Posts: 86
Joined: May 2016

Its a wonderful post because you express a lot of interest/love in your husband.  My wife at the age of 35 was diagnosed with breast
cancer about 4 years ago.  She was an unpleasant woman before being diagnosed with cancer and has been over the top
unpleasant after chemotherapy. If you love your husband, that's great.  The common theme with caregivers is the difficulty
in taking care of someone who now hates you.  Every post is about some caregiver taking care of their mom or dad or husband
or wife and the person with cancer dislikes and disrespects the person taking care of them.  If you care for your husband and
you let them know that, then all is well and your marriage will be fine and your husband will be fine.

My wife and I came home from the hospital after the birth of our 3rd child and my wife on that first day home went to
live in the basement.  She stayed in the basement for 2 years; all day in the basement.  There was a mountain of work to do!
Then just after my daughter's 2nd birthday, my wife came upstairs and started calling the police on me.  She called the police
12-15 times on me and accused me of really bad things.  Then miraculously her sister came for a visit and got her to go to a
clinic where she was diagnosed with cancer.  It was rough living with my wife before she was ever diagnosed with cancer. Then came
11 months of chemotherapy.  Then there were maybe 4-5 months where she got off the couch and started doing some things with
her life.  She asked about kids; viewed the photos I took of the kids, talked and had a nice personality.  But after 4-5 months, her
old ways came back and while she still lives here, she participates in nothing and she has nothing but bad things to say about me. 
Being a caregiver is thankless job.  If you appreciate your husband and just talk to him, then he is really not taking on the caregiver
role (in my opinion).

Momentary
Posts: 5
Joined: Mar 2019

I'm sorry @Catholic, that sounds like a very tough situation to be in. You sound like a very caring husband and father who is trying hard to keep things together. I really hope your situation improves soon, everyone deserves love and appreciation, especially caregivers.

When my mother went through cancer and various other illnesses, it seemed that I could do nothing right, and I would be shooed away by one of my sisters who would "know how to handle mum". The way I dealt with it was to distance myself from my mother and I learnt to care less and be less affected. When I was sick, my mother treated me like I was a nuisance and I learnt fast to try and hide my state and not show that I was vulnerable. Being sick was a weakness and apparently unacceptable. I became a very independent person and when I had cancer the first time, I did everything to hide my state and didn't let anyone in. Fast forward to the first few months with my husband, one night I awoke in a coughing fit and my husband lovingly caressed my back. I barked at him to "not touch me!". He was shocked, and so was I. I realised, I was acting exactly like my mother, pushing away someone showing me love during a moment of weakness. I realised that that was unacceptable and I would not do that to him. I worked on allowing myself to be vulnerable and 'weak' around this man who loves me and wants to protect me. I learnt to let go of the control and to be kind to him and myself when I was 'weak'. My reflexive instinct is still to shut myself off, but I am aware of this tendency and how awful it is to do to someone who is just trying to care and love you. I do still have moments when the pain is really bad that I will go hide in the bathroom until it passes. I have improved in that I will tell him about it the next day. It's just so hard not to feel pathetic when you are moaning and you have witnesses. 

Maybe psychologically we feel less deserving of love when sick? Being sick and vulnerable equated to being pathetic and weak, not good attributes in my eyes/mother's eyes. Maybe a trust issue? Do we not trust that our caregiver can look after us? My mother definitely didn't me to look after her. I in turn, didn't trust myself to care for her as a result, my confidence in handling the situation disappeared.

I guess I am scared that I am still pushing my husband away a little with my "she'll be right/"I'll be fine!"/cheery disposition" and not letting myself be truly vulnerable/let him take care of me. My husband's first wife got distant before she died, she didn't understand why my husband would keep repeating "I love you". I can understand creating that distance as a coping mechanism, I need to make sure I don't fall back into bad habits and push him away unconsciously. I am scared about the upcoming chemo and nervous about being pathetic and a "pussy' but I will do my very best not to 

I honestly feel that caregivers sometimes have MORE to deal with than those cared for. It is terribly hard to witness someone you love suffering and feel at a loss at how to help them. I think that caregivers are completely under-appreciated and I think that being ignored/resented/badly-treated by those you care for is absolutely not acceptable. I think that me asking you guys for advice about the best way to care for my husband while he is caring for me might also be very difficult for you. You have been conditioned to be selfless and not think about your needs, so maybe the answers I seek will need to come from a third-party, like a therapist. Or, if there are things/words that you wish your loved one would do/say that would make your job easier, please let me know. Maybe identifying what you need to hear from your loved one is universal for caregivers. I know I would've been so happy to hear my mum say to me, "Thank you for taking care of me, I really appreciate everything you are doing." 

Thank you everyone for letting me express myself. I feel a little like an imposted as this is YOUR section of the forum and I don't mean to hijack attention. I have a lot to learn and want to be the 'best' patient for my husband so that we can get this through as unscathed as possible. Thank you so much to all of you for everything you do for your loved ones. They are very lucky to have you in their lives and caring for them. Lots of love to you all <3

soonermom's picture
soonermom
Posts: 155
Joined: Apr 2017

My husband is two years out of treatment.  I think part of this depends on the burtality of the treatment and the normal variation in how every patient responds to any treatment.  My husband had a very difficult treatment protocol and the expected side effects.  He says now there are things/time frames he does not even remember.  Caregiving changes you and your relationship.  Going into this, I think that is the thing I think you have to know and embrace.  It can change you and your relationship for the better or not.  For me, the thing I missed the most was conversation.  My husband went days and barely spoke.  He just couldn't for physical and emotional reasons.  The more things you can work out before treatment starts, the better.  Honestly, some patients/caregivers depending on their situation do relatively well.  They may not be the people who seek support here.  At various points, as the caregiver I really thought I might need professional help.  Because of our situation there was no easy way to access support groups except online and since I had to work to maintain our insurance and our treatment was hours away, I could not even find time or energy to go to a counselor.  I probably should have done it somehow.  I hope your husband will consider that he may need to seek support for himself for lots of reasons in some way. I hope you will have a positive and uncomplicated response to treatment.  They have really improved the way they can support treatment side effects and I wish you the very best on your journey.  Personally, as a caregiver I felt I had to keep all of my needs/thoughts to myself.  I absolutely could not bring myself to share my struggles with my partner who was in a fight for his life....I am sorry I just could not do it.  I felt like a whiny baby complaining about anything.  I mean anything.  That alone is a sea change in most relationships.  Just think about that for awhile and you can see why cancer treatment changes relationships.  If you truly feel you are not in a fight for your life and treatment does not impact you in a life changing way then you may not see such a shift but for many of us on this board we truly are dealing with a continuum of situations where life is hanging in the balance and it does tend to upset the balance of what most relationships have known as the norm.  Being mindful is always helpful in any situation it is just that many days I felt I might lose my mind or already had.  Good news is we have made it through and have found a good new normal together. 

a_oaklee
Posts: 526
Joined: Nov 2013

I'm really glad you wrote here on this caregiver section.  You sound like such a lovely caring person, and because of that I think you and your husband will make it through this difficult time.  I also wanted to say that I don't think this section is just for caregivers, and I appreciate the commentary from patients on the caregiver topic.  I'm always hoping to understand more from anyone willing to be open and honest.  

I do agree with sooner mom, that health crises in a marriage change the dynamics.  How could it not?  For me, being married for a really long time, I keep reminding myself of "for better or worse, and in sickness and in health".   I've been dealing with my husbands cancer diagnosis since 2012, and I assumed we would grow closer, but we grew apart.  He has become silent and distant, and so I get online to not feel so alone.  I want to care for him and be close.  He won't talk about "it".  It's extremely difficult for any caregiver spouse to talk with their partner about their own struggles.  Caregivers experience great loss, but how can you say anything to the patient dealing with fighting for their life?  If you share your feelings, then they can feel a greater burden or guilt.  

My advice to you would be, to be receptive when your husband does need to share his thoughts or fears.  You sound optimistic and fearless, but that doesn't mean he feels the same.  I hope you can find a way to stop feeling guilty.  You have done nothing to feel guilty about.  When you take on the burden of responsibility and guilt, it ends up silencing him because he doesn't want to make you feel bad.  Find a way to just listen, if and when he chooses to share his concerns.

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