Caregiver of Nasopharyngeal cancer stage III

[Anonymous]

I am new here.. kind of.. I have been reading Mostly...

my husband of 22 years was being treated for chronic sinusitis... for two years.. and the doctor up and retired without notice.. Thankfully ..I say this because if we hadn’t been forced to find a new doctor my husband would of died.

in 2017 he was diagnosed with squamous cell carcinoma... then we were told it was Nasopharyngeal carcinoma stage 3 after biopsy and PET scan. It was inoperable, he went through 9 weeks of harsh chemo Cisplatin, Fluorouracil (5FU), And Texotere (Docetaxel) .. then 37 treatments of Proton therapy with weekly doses of Cisplatin ( only did 4 because it put him in the hospital by the 8th treatment of Proton/ Cisplatin treatments.) he has survived his treatments.. and I am blessed to still have him, even with the long term side effects..memory loss, mood swings, nacreous, loss of taste and saliva, weight loss, muscle loss, etc..

 my point I’m trying to get to is after 18 months of remission ( they won’t tell us this..his doctors won’t use the words.) he is more angry now then he was during his treatments..  he isn’t happy with anything.. I suggested group for survivors but he wants nothing to do it, he went back to work a year ago. We thought that would help bring him back to some kind of normalcy, but it is a daily struggle for him, I suggested disability but he didn’t want that either.. he treats me like he hates me..nothing I do is good enough.. and for the last 5 months his temper has worsened. Our children are 19 and 14 and have been pretty strong through the last 18 months but they stay away from him, which brakes my heart. I wish someone would of prepared me for this..I feel like my husband is gone and this person is a stranger... he has no ambition for his hobbies which he was a hard core hunting, fishing, hiking... gardening anything outdoors.. 

i feel like I have failed with trying to care for him .. I find myself yelling back at him after weeks of complaining and negativity... And he wants to argue all the time.. I feel useless..

i am a stay home wife.. but I manage all of our responsibilities myself.. and I don’t mind.. but now he ridicules me about everything.. 

I suggested he tell his doctor the things he tells me, but at his appointments he acts like he is completely fine,and jokes around and as soon as we leave the office he changes, I confronted this at his last check up.. and the doctor acted like I was a horrible person.. his temper scares me..he was always the laid back type.

he is very depressed and even with reassurance of my love for him he acts like he hates me ... like he recents  me for being healthy.. 

i am truly lost.. I hate how the tension in our home is so out of control my kids can’t communicate with each other with fighting, they stay locked up in their rooms.. my son was in therapy for a year during to help with things, and I suggested family therapy and I get yelled at .. I don’t know what to do.. 

i don’t want to loss my husband or my family from this and I seem to be the bad guy all the time..I’m walking on egg shells .. never knowing what’s next.

Do I leave and be the bad guy for being weak..or do I stay and keep praying it will get better.

i feel like I am morning the loss of someone who is still alive.. I miss hugging my husband and laughing about things in life.. it’s like we stopped planning our future and am just numbly going through the days..

I am sorry this is such a long post.. I feel so alone.. and don’t seem to have any answers anymore. I feel like I’m sinking into a horrible depression myself and I can’t give him the effection and attention he needs daily, because I am drained, I have no friends, and my family and I aren’t close.. so I really don’t talk to anyone.. we don’t have a caregiver support group in my local area, that is why I am here.. hoping to find anyone that is going through these feelings and can say your not alone, we too are going through this and things will get better.. 

[iloveyoudearly7]

Hello,

What you and your family are currently going through, must be difficult to say the least (I know the word 'difficult' isn't enough to even begin to describe it). Your husband seems to need to seek professional help and services as soon as possible, especially if his understandable angry is casuing great distress to others in the family. I know this may sound silly but is there any way that a conversation can be held with him, to discuss the emotional impact that is being caused?  If not or your unsure how to approach this, may I recommend the following support sites from the Cancer Council?

Cancer Connect:

A Connect volunteer can listen with understanding and share their experiences and ways of coping. They can provide practical information, emotional support and hope. Many people newly diagnosed with cancer find this one-to-one support very beneficial.

For more information on Cancer Connect call Cancer Council 13 11 20.

https://www.cancer.org.au/about-cancer/patient-support/cancer-connect.html

Cancer Counselling Services:

What is the Cancer Counselling Service?

The Cancer Counselling Service is Queensland’s leading cancer specific counselling service. This service is staffed by nurse counsellors and registered psychologists, all with training and experience in helping people affected by cancer.

Counselling can assist you at any stage of your journey, from diagnosis through to living with or having survived cancer. You can also benefit from this support if you are grieving.

What services are available?

Because we realise people’s support needs vary, we provide counselling within a stepped model of care. This means, where possible, we start with guided self-help delivered by our nurse counsellors.

Our service is provided via Telephone and Skype, with face-to-face appointments available in some locations.

Nurse counsellor service

Our nurse counsellors provide guided self-help, in the form of a single telephone session and a follow up contact. They offer guidance and tips on coping with the effects of cancer or adjusting to life with or after cancer. They also provide support with making decisions related to treatment and addressing treatment concerns.

Where guided self-help does not address your concerns, we will link you in to our psychology service.

Psychology service

Those experiencing high levels of distress will bypass guided self-help and be linked into our psychology service. Our psychologists provide more intensive support in the form of therapy which involves a number of one-on-one counselling sessions.

Group programs and Workshops

Group programs are conducted over the telephone as well as face-to-face in Brisbane and selected regional offices. These programs will enable you to learn new skills in assisting you to cope with cancer and its related challenges. Our workshops, focusing on specific coping skills, such as relaxation and mindfulness, are usually delivered face-to-face in locations around the state.

What support does the Cancer Counselling Service provide?

We can assist with a range of cancer concerns including:

• Adjusting to life with cancer
• Stress and difficulty coping
• Depression
• Anxiety
• Sleep difficulties
• Loss
• Family or relationship problems
• Treatment side-effects
• Sexual problems
• Uncertainty about the future
• Survivorship
• Fear of recurrence
• Therapy related to end of life
• Bereavement support

Are there fees for the service?

There is no fee for the service, we are funded by the generosity of Queenslanders.

Who can access the Cancer Counselling Service?

The Cancer Counselling Service is available to anyone who is distressed by cancer, including family and friends. We offer individual and couple counselling, as well as the opportunity to participate in our group programs.

How do I request a referral?

Call Cancer Council 13 11 20 to speak to one of the team who can refer you to the Cancer Counselling Service. You can call Cancer Council 13 11 20 between 9am and 5pm Monday to Friday (excluding public holidays).

How do I make an appointment?

Upon receiving your referral, our Cancer Counselling Team will contact you within two business days to make an appointment.

Appointments are available Monday to Friday during business hours, with limited after-hours appointments available by arrangement.

https://cancerqld.org.au/get-support/cancer-emotional-support/cancer-counselling-service/

Or Call the Cancer Council on ph: 13 11 20 in general, to discuss your current circumstance to see what other advice or services they could offer?

But if all else fails and he refuses to seek any form of assistance and the abuse continues against you and your children. Then maybe, just maybe you might have to consider temporarily  seeking an alternative living space. But I highly doubt it will  come to this.

[Katekat]

You are most definitely not alone @Anonymous!

It doesn't matter where we live, cancer knows no borders and the experiences of people affected by cancer are often very similar. The medications and treatments may change from country to country, but the emotional impact alone of cancer would incredibly familiar to everyone across the board.

We are a community based out of Australia but we have many members from everywhere in the world, so welcome 

Have you given the American Cancer Society a call recently? They may have a counselling program or know of a community organisation nearby that could assist in some way.

I am going to recommend you have a look into the following resources as well:

• Family dynamics and cancer - podcast
• Cancer affects the carer too - podcast
• Emotions and cancer - pdf book
• Caring for someone with cancer - pdf book
• Caring for the Carer - webinar
• What support do men need after cancer? - webinar that looks at men's pyschosocial needs
• Someone I know survived Cancer – “How do I help once treatment is finished? - webinar

That's just a selection of our resources, some are podcasts and webinars, others are booklets to read. These are a great starting point.

I think it is incredibly important to look after yourself, as well as your husband. Self-care is something that a lot of us forget about when we're just going through the day to day things 

-Kate

Online Community Manager

[Anonymous]

Thank you, I will look into these, 

I am confused by how he seems good Monday and Tuesdays..but by Wednesday-Sunday he is a different person..

and acts like he can’t remember any of the hurtful things... he tells me he has no feels for me what so ever...and then by Monday he is all I love yours.. 

I have lost a lot of family to cancer.. I took care of my father when I was 26.. he passed with in 5 months and it was really hard..I just had a new baby and missed many milestones, but my dad needed me.. I just never thought I’d have to watch my husband go through this...I tried talking to him about the impact the negativity is taking on our family and how the tension isn’t good on our children... 

but he seems so out of touch from what he went through he just doesn’t see or hear it.

i don’t mean to sound heartless... but he has been in remission for almost 19 months, and I know he is scared the cancer is going to become active again, we all fear that, he gets drinking and starts telling me he is going to die and that even though his body will be gone, he will be right here with me,  it really breaks my heart knowing he is so focused on dying he is forgetting to live... I have so many friends who are survivors and treat life as a second chance and I look at them and wonder when ...when did they decide it’s time to live again.. 

once he graduated to every 6 months check ups I really thought he’d see...He beat it (in a sense) the mass has not grown or been active in 19 months... but then we had a set back, they found spots in his lungs.. for three months we have been watching and waiting for news..but they said the spots are not growing and won’t need another check up for 6 months.. 

i pray every day he will hear me and learn to live again.. because he has so much to live for.. our youngest is needing his dad.. and our daughter even though she is almost 20 still needs dad to guide her.. 

myself, I really miss my husband.. the love of my life... I feel I spend more time waiting for those clear days to get me through those dark days.. I need to go back to saying I’m sorry your having a bad day , but I’m not going to argue with you right now, and walk away. And give him time to reflect on what is making him so angry... I guess the last 3 months have taken a big toll on me emotionally, and I need to remember everyone has a bad spell ..I just have to wait it out.. it’s just really hard to hear the words he says, then acts like nothing happened... Thank you for all the suggestions and I will start on those, I’m kind of going through my own medical issues right now.. I have put off.. 

[iloveyoudearly7]

Of course but please do not forget about yourself as well.

[carebear]

Hi, I really felt for you when I read your message. It reminded me a lot of when my father suffered brain cancer many years ago. He was fine when the family were visitng and put on a brave face, but when we left he just shut down and refused to talk to my mother, even rejecting her attempts to care for him and being sarcastic towards her. She told us she felt so rejected and hurt.

It is a great pity that this is also affecting your children, you said they were avoiding him. And you dont feel you have the friends or extended family to offer support.

As you and your children are both having such a difficult time, would it be at all possible for you three to join forces and provide the supportive care for each other that could help you all through this? Maybe they would like to talk to you about how they are feeling, maybe you would like to talk to them about your feelings too?

I think it could be helpful as a family, if the 3 of you try to have some time together to   share your experiences and work out some strategies of how best to cope with the situation, and how you could support and care for each other. Maybe have a meal out together once a week? Work on becoming a team.

It sounds like you have tried everything to help your husband out of his negative speace, but without much success. Maybe its time to focus on building up the relationship between yourself and your children to best help all of you on a day-to-day basis.

I dont know if that will be of any help at all, and maybe you have already tried this approach, but I do wish you all the best and hope you can find something to relieve the very sad situation you are in.

If I knew how to add a HUG emoticon, I would. 🙂