My Husband Had Stage 4 liver cancer.

I am new to this community. I feel very lost. My husband has been diagnosed with Stage 4 Liver Cancer. He was on FU5 and Avastin for 12 months. He then went on to have Maintenance Treatment of the same chemo, but he was terribly ill after each session. He hasn't had chemo for 7 weeks now, and is feeling very well. His last scan showed that the lesions in his liver had increased in size. We are so shocked. He has now been offered Ireocatin (spelling ?), which will be given in smaller doses, over a longer period of time. This is called the Next Line of medication against this terrible disease called cancer. I would really appreciate any assistance you could give me in trying to hold myself together, whilst supporting him. There are so many questions I need to ask him, but I don't want to upset him. If I leave him alone to go to the shops, etc., am I being selfish ? I never want to look back on this time and have regrets - I need to be sure that everything I do, will be OK for him and for me. I look forward to receiving any advice from anyone in the same situation, or someone who has had a loved one suffering from Stage 4 Liver cancer.

Thank you.

[spazure Caregiver]

Firstly, sorry for the late response. My thyroid likes to make me think I'm a hibernating bear sometimes :/

Welcome to the site! Many of us have had loved ones in similar situations. Without knowing your husband, it's tough to say what his answers would be to these things -- but I can tell you how my father felt.

My father wanted everybody around him to act as normal as possible. This included shopping, visiting with friends and family, going to movies, etc. As he got sicker, he was too tired to come with -- but he kept urging us to go out anyway. Obviously you love this man, so you'll want to make time for him as well -- but I know for a lot of people in this situation, feeling like a burden is huuuuge. Also you're no good as a caregiver if that's literally your entire existence. Some form of self-care -- even minimal, is absolutely necessary. It's a very difficult balance, and I can't say for sure that I got it right... but I know that I did my very best, and ultimately that's all any of us can do.

[Hidden in reply to spazure]

Thank you for your reply. As you say - we can only do our best - I'm just afraid that it will not be enough.

[andersoncathl Caregiver]

Hi Lynda,

I'm so very sorry to hear this. My husband had liver cancer but that was a long time ago (2003). I know how you feel. I will share what I think but as with the earlier response, only you can know what feels right for you and your husband. You have to take care of yourself because if you don't, you can't be any good for him. So, you have to get out sometimes without guilt. Hopefully, there is someone else who can be with him, if necessary, while you go shopping, take a walk or go to dinner with a friend, whatever. I am sure your husband would also want you to take a break.

My husband and I also did not talk about the 'what if' scenarios very much at all. I think we were both trying to be very positive and hoping for the best. In hindsight, I really wish I had forced myself to talk to him about certain things. His family really wanted me to ask him what he wanted at his funeral, etc. I refused to do this just because I knew that if he had a preference, he would have told me and I felt that the funeral, etc. is also for the living and being able to remember our loved one. But, we had 3 young boys at the time and I wish he had felt able to speak to them directly about what was happening and tell them how much he loved them, etc. My husband did ultimately share some thoughts for our future without him but it was so close to when he died and I wish we had had more time to talk about this type of thing. His battle was very short (6 months) and we didn't have much time. I guess what I'm trying to say is that if you don't have these conversations, you may regret that later on. I'm sure he is thinking about the 'what ifs' and may be wanting to be strong for you.

Be kind to yourself. You are doing the best you can with an impossible situation. I try not to beat myself up over things I cannot change (easier said than done at times). So, do take time for yourself and I would suggest trying to have those conversations you want to have because if you don't, you may regret that later on.

Best,

Cathy

[Hidden in reply to andersoncathl]

Thank you Cathy, for taking the time to respond. I will certainly take your advice and see if it is possible to encourage him to talk to me. More and more, these days, I am lucky if I get a "grunt". I tell him that I will not accept a grunt, but what I really want to say is that, as his cancer gets worse, he may not be ABLE to speak to me, whilst at the moment, he can, but won't. I sincerely appreciate your kind words. Heartbreaking times ahead. I hope you and your children are doing well. Kindest regards,

[andersoncathl Caregiver in reply to Hidden]

Hi Lynda, Another thing that your reply reminded me of was how I really didn't understand why my husband reacted the way he did sometimes. I felt that he wasn't doing the things I might do in his situation. But, what I realized is that although I was facing a likely life without him....I was not facing death personally. My husband got short-tempered in the end and would snap at me which he never did before (maybe like your husband grunting?). No doubt, he was just trying to do the best he could...in pain, facing death, etc. So you have reminded me that although I sometimes wish things had been different in terms of getting him to talk, I think that there is no best or right way to deal with the impossible. We were both just trying to hold ourselves together.

Thank you also for asking about how we are doing. This type of loss forever changes a person but I am quite well now. My oldest son (who was 6 at the time) still struggles emotionally with anxiety and depression and, frankly, I don't think he has ever processed the loss of his Dad with whom he was so close. The other 2 boys were so young that they are doing well. I am remarried to a widower who lost his wife to cancer and it helps to have someone with whom to share similar thoughts and feelings. Please keep in touch!

Cathy

[AndreaWilson_Founder Partner Editor Caregiver]

Hello Lynda,

I apologize for my late reply! I'm so sorry about your husband's diagnosis. My sister Adrienne was diagnosed in stage 4 and only lived 147 days (in 2001). I agree with what both Azure and Cathy wrote.

1. You do need to take care of yourself in order to take care of him.

2. You do need to have the tough conversations. Like Cathy, I wish I had but I didn't know how to talk to my sister, who was also my child (I was her legal guardian), about dying at the age of 15.

3. It's also important to find out what matters to your husband. For example, he feels better now, which is considered clinical improvement, but his tumors are worse, which is a medical indication of disease progression. (The same thing happened to my sister. During her shortest round of chemo, she felt great. So it's not unusual.) Quality of life matters. What does that phrase mean to your husband?

Feel free to reach out to me at [e-mail].

Sincerely,

Andrea Wilson, Blue Faery President & Founder