Caring for my soulmate.

[Tmb1973]

About 6 months ago my husband, my soulmate, Russ was diagnosed with stage 3 non-small cell lung. Caring for him is difficult. I don't know what he needs anything or need to talk to someone about how he feels or feeling. I love him. I feel like I'm not helping enough and sometimes not enough. How can i find that middle ground?

[SusieJo1948]

Try talking to him and if he. Still won't. I'm going to write about what I went through. I had breast cancer 8 years ago it was caught very early they found it with mamagram. It was stage 0 they removed my breast. 2 years later I got. Lung cancer they removed the upper left lung I turned down radiation. I felt I was too weak. I did 6 months of Chemo Taxol my first time and had a very bad reaction they didn't think I was going to come out of. It but I did. So next day they it me on Taxetere and carplatin. After 3 months He changed the Taxetere to abraxan which goes directly to the cancer and stayed carplatin.I am now a 6year lung cancer survivor. They have a lot of new treatments out and more coming out that's letting stage 3-----and 4 live longer.My oncologist calls me his little miracle. So let him read this and both of you not be afraid. Tell him to have hope,don't give up keep fighting. What happened to me could happen to him so don't let him give up. You and your wife need to go through this together. Don't ever think your alone or lonely there are a lot of us here who care and were here for each other and you two. Please don't let this get you down you take care of yourself so you can take care of him he needs you weather you think he does or not we"'ll all be here for you both. So let him read this. Love susiejo1948

[kri312 in reply to SusieJo1948]

Do you think your breast and lung were related? I too was DCIS stage 0 and they concurrently found stage 1 adenocarcinoma r lung- they say no connection but????

[SusieJo1948 in reply to kri312]

No my breast cancer and my lung cancer were two different kinds of carcinomas. Can I help you with anything else? Love susiejo1948

[Pessa in reply to SusieJo1948]

Am also a breast cancer survivor and have had lung cancer for 5 years. Am on Tagrisso. Unaware of any connection between the 2 cancers .

[Denzie Moderator Volunteer]

I’ve been the patient and I’ve been the caregiver. I’d rather be the patient. As patient I know what I’m doing is actively fighting it. As caregiver I didn’t know what to do or how to help.

Some thoughts, check with the oncology social worker to learn if there are caregiver groups you can attend. Learn from others what helped. Also, consider a phone buddy. Lungevity and the Lung Cancer Alliance both have free programs and will match you with another caregiver, matching your age, his cancer diagnosis and stage, and /or treatment types.

Sometimes we patients just need you near us sitting quietly. Encourage him to talk about his fears and let him express them. They are very real. Help set up his prescriptions for a week at a time. Be patient. What was good yesterday may have no place today. Encourage short walks.

This is a start. Others will be checking in. Remember to take care of you because if you get sick you can’t be there to help.

[Ncpoet]

I am a five+ years survivor of stage 4 non-small cell lung cancer. I was also a caregiver for my husband and my mother during their cancer journeys. It was more difficult being a caregiver. You cannot read minds and you hope you are doing everything possible to help them. As a patient, I didn’t always want to talk about the cancer. I just wanted some time to feel normal. What was important to me was knowing I had support and I could talk to my husband and my mother, my caregivers, when I wanted to. It seems we took turns with the caregiving. Be there at appointments, ask the doctor questions and reassure your husband that he can talk to you about anything especially how he is feeling.

Wishing you both well,

Judy

[anrean]

Hi and welcome to the group. You will find lots of answers here on the medical end as well as the emotional end.

Six months isn't a long time to digest things. So many of us start out feeling like it is the end because of all that we have heard. What is missing is that in the last few years there have been stunning changes to lung cancer treatment and people are living for many years; for many it has become a treatable disease instead of the death sentence it was just a short time ago.

Finding a middle ground in care taking is difficult. Let Russ take the lead, and also feed him as much positive information as he will tolerate. I've had primary cancer 5 times, and find that this is the most difficult one to digest. Lots to research, but the best advice came from my liver oncologist who recommended not reading anything more than six months old because research and treatment are changing that fast!

Encourage him to talk, but if he has been the "silent" type from the beginning this may be difficult, so just let Russ know that you are there for him. Don't tiptoe around things, and never let yourself feel like you are walking on egg shells, As soul mates, you need to talk that sort of thing out so that you can be healthy, too. This "new normal" for both of you can be daunting. It is very possible that all he really needs is to keep as much the old normal for as long as possible. There is so much coming at him so fast, and it really is overwhelming and hard to adjust. All of a sudden there are so many new things like so many doctor appointments, having to adjust to a new schedule of chemo and/or radiation, and so many decisions to make. It isn't unusual for many of us to not even think about our mortality and then suddenly it is being foisted on us. It is especially difficult if we are used to going to work or doing other things and now that schedule is interrupted.

Be as supportive as possible, and realize that for now he may need to back off and digest everything. Sometimes just being there is all the support Russ may need. I was diagnosed 10/16 and still find that I prefer not to talk about it - I try to hide things so that I can stay as old normal as possible even though my family and friends are very caring.

You will find the middle ground, just remember that he isn't going through this alone - your life is automatically changing too just because Russ's life is changing. A while back we talked about who had the harder "job" and almost all of us agreed that the caretaker does. I've been on both ends of that spectrum, and agree completely that being the care taker is most difficult - no matter what we do, we feel it isn't enough even though the ill person thinks it is great!

Let time guide you! Keep as much of the old normal as possible, and embrace the new normal when it happens. Russ is very blessed to have you in his corner as a soul mate.

Hope this helps you find a middle ground!

Lauri-Anne

[Esthersm]

Please have your husband go to a cancer support group ,it will help him to open up his thoughts & learn from the group. People go through the cancer journey know how it feels ,the side effects ,anxiety & acceptance to be possitive.