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Don't know where to begin
Andygump
3 Posts

My husband has been diagnosed with non curative stg 4 prostate cancer. I have two children, 3 and 9 yrs. I am looking for supportive information, especially for my children. I would like to know what to tell my children about my husband's condition, how to talk to them and support them through out the time we have left with him, and what supportive resources (counselling, therapy) are out there for kids. They know he is sick and has cancer, but we have not talked about the seriousness of his diagnosis and his prognosis.

Frankly, I know I need help, but I don't even know what questions to ask, where to begin - what I need to consider now. I guess I really need help and guidance about what to prioritize for my family and my self...end of life stuff. It sounds grim, but are there end of life coaches? When my mother died of cancer 8 years, we knew she was dying for some time, but after her death I felt like I had been so unprepared and missed opportunities.

Any thoughts, suggestions, resources, personal experiences that anyone can share is gratefully welcome.

9 Replies
Runner Girl
1850 Posts

@Andygump

Welcome, I am sorry for your husband's diagnosis.

I'd like to introduce you to @Roy L. who is also diagnosed with prostate cancer and can assist with insight, information and support.

Runner Girl

Hello and welcome @Andygump .

I am so sorry for your need to be here but glad you reached out. Many people do lead active lives with a stage 4 diagnosis but by your questions, can I assume you have not been given a good prognosis?

Because you asked about end of life, I want to give you an excellent resource for that. Canadian Virtual Hospice has all kinds of information you will find helpful. And to answer your other question there are people called end of life doulas or death doulas that do help patients and their families with navigating that process.

You have received some other good resources already from other members..

How are you doing? You have lots on your plate right now so don't hesitate to reach out to your village for help.

Hugs

Lianne

Roy L.
257 Posts

@Andygump Hello and welcome, sorry to hear of your husbands diagnosis but I hope you will find some good resources here.

I was diagnosed late 2018 with stage 4 Advanced PCa with a large tumor and metastis to my hip and femur. My PSA at diagnosis was 442. I was immediately put on Androgen Depravation Therapy and radiation to my bones. My kids were much older 20 and 24 so I can't imagine what it would be like to discuss this with younger kids. I was honest and truthful with them and they have been amazing.

My Doctors would not give me any kind of time frame on my life expectancy as it all depends on how I reacted to treatments. I would like to have some idea, but I do understand why they do not want to discuss at this point.

I know this is very overwhelming to you both, the first thing I was told was to breathe and gather as much information as I could. So I will pass that on to you, knowledge is power. Power to make decisions and to discuss this with your kids.

If there is anything at all I can do to help you guys, please reach out. If I can't help I will point you in the right direction. I wish you both the very best and please use me as a resource.

Roy

Peace Love Cure

Andygump
3 Posts

Thank you so much this link. The oncologist didn't give a firm time frame - he said it wouldn't be 20 years, but maybe 4 or 5. I guess it depends on how my husband responds to treatment. I don't want to waste any part of what time we have. We both hope for the best, but I need to be prepared. My way of dealing with crisis is to be proactive, and while I've done a lot of research for diagnostic and treatment options for Stephen, I find I am now just been collapsing under the all the things to think about and need input from others who have insight & experience with these things.

Andygump
3 Posts

Thank you Roy. Knowlege is power indeed. So much of what we've experienced so far is the agony of waiting and not knowing, and getting his GP to support us in exploring options and seeking second opinions. Because Stephen had blood clots early in his diagnosis, we wanted a referral to a urologist who does transperineal biopsy which is safer than the traditional method. It was weird. And frustrating. We had to go to a walk in clinic to get a referral. Its hard to feel so uncertain, scared, and vulnerable and only to be dismissed by those who should have our best interests in mind.

JustJan
740 Posts
Andygump‍ I’m glad you posted here and have started to gather some good advice and information.

It sounds like you are going to be a great advocate for your husband and he is lucky to have you in his corner. The one thing I learned from my cancer experience is that there are a lot of twists and turns and things don’t always go as planned. Like you, I like to have things planned out. I tried to be as prepared as possible, but also had to be accepting when things changed.

Another good source of support are the social workers which are available at most cancer centres. They are great at helping you wade through all the that needs to happen and direct you to resources that can help. You can ask for this at your husband’s oncology appointment and they should get it all set up for you. This is available to both you and your husband.

Try to breathe, even though it may be hard. One step at a time and one foot in front of the other.

My heart goes out to you and your Stephen. My Steven is having surgery Monday for his cancer relapse. Happy to be a voice on the other end of the phone if you need to vent, a safe space to cry or talk about your fears. Please know you are not alone. I’ll keep you in my thoughts and sending you all the strength I possibly can xx

Roy L.
257 Posts

@Andygump I know this is overwhelming to you both, I am going to make a few suggestions that I hope will help on this journey.

One thing I should have done from the beginning was keep a note book. Take it with you to all appointments to keep track of things like PSA number, grade, stage and after biopsy Gleason Score. Also if you think of any questions, write them in the book so they are not forgotten at appointment time. My first few appointments made my head spin and I wished I had written things down. I now have a journal of my journey and my oncologist finds it very helpful as do I.

I had the ultrasound guided biopsy and it went ok. Not the most fun I have ever had, but it wasnt as bad as I was led to believe it was going to be. The biopsy will give so much information to the Doctors, I hope it goes well.

Again if there is anything I can do, please reach out. Cheers

Roy

#peacelovecure

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