November 2, 2022 at 12:51 pm #102104lourdesaliciaSpectator
Thank you Lynn for sharing your experience. Everyone copes differently with a cancer diagnosis, and I am glad that you shared yours and your family’s experience.
I am not sure if you have joined the caregiver support group, or if your husband has joined the patient support group? They are both groups that allow for sharing and sometimes others in the group have good ideas, especially as you last mentioned that your husband has an ongoing cough.
I am putting the link for the support groups here in case you are interested: https://cholangiocarcinoma.org/virtual-support-groups/
You can also find it on the calendar of the CCF website.
Sending you and your family positive thoughts during this journey.
LourdesOctober 17, 2022 at 3:01 am #102077
I totally understand your husbands reasons for keeping his cancer a secret. The few people we have told, mainly my husbands parents and family, have sometimes made our situation harder. We not only have to deal with our own feelings and emotions, while keep this cancer secret from people around us and the media, but now we have to deal with his parents sadness as well. They will call and want to talk about how they are sad about the possibility of losing their son. I just feel like we do not need that extra emotional turmoil.
You mentioned that a CT scan found nodules in your husband lungs. Does he cough? I am asking because my husband coughs a lot and I am worried it might be the nodules in the lungs but the doctors do not seem so concerned.
Lynn AppleOctober 15, 2022 at 1:43 pm #102075GapSpectator
Lynn, my husband was diagnosed a year ago. CT scan in mid-Oct 2021 showed what the radiologist determined was “favored to reflect cholangiocarcinoma.” Biopsy confirmed it in late Nov 2021. PET scan showed it was Stage 4 — nodules were found in his lungs and near his heart in the mediastinum. Later, in the winter of 2022, suspicions of combined hepatocellular carcinoma and intrahepatic cholangiocarcinoma were locked in as an updated diagnosis.
One reason (of many reasons) my husband wanted to keep it a secret was that some well-meaning friends/relatives can be very upsetting. We know a man who beat a stage 4 cancer and he told us how at the beginning, and then again if he’d had some difficult updates to his condition, he’d get phone calls from people who would turn the conversation into how traumatic it was for them to hear the news, as they were sobbing and carrying on… expecting HIM to console THEM. And then, of course, the people who “helpfully” told him about the cousin of the friend of the guy at the gas station who had some very extreme and dire outcome from something similar, so “omg,” they “know how difficult this must be for you.” My husband wanted to avoid all that since he was having a hard time absorbing the shock of the diagnosis back then and just one thoughtless comment could have easily haunted his thoughts forever. He was too emotionally and psychologically fragile to share his news. Now I think he hopes to ride this out and have no one know the better, as your husband had hoped he’d be able to do.October 15, 2022 at 9:49 am #102074
Thanks for reading my blog and for your kind words. I think my husband is choosing to keep his diagnosis a secret for some of the same reasons you did not want to tell people. I think he does not want people to pity him. He wants people to see the same capable person he has always been. I also think we both chose to keep it a secret in the beginning because we thought we could beat it and no one would need to know. Little did we know we would still be fighting it two years later.
Lynn AppleOctober 15, 2022 at 6:30 am #102073bglassModerator
Hi Lynn Apple,
Thank you for sharing your blog. You mentioned it helps you to write about how you are feeling – your words will also help others who are going through the same emotions.
Your blog reminded me of my own diagnosis and how I felt about telling others. I probably told a few more more people I was being treated for cancer, but told very few which cancer it was. Usually when you internet-search Cholangiocarcinoma, what comes up has words like “dire” and I just did not want to deal with people reading that. People who know about my cancer were wonderful in supporting me and my family, so that was not the problem. I just wanted people who knew me to see me as ever, in the same way, and not as a patient. It is now some years later, and in retrospect, I still think my instinct would be to do the same thing. Your blog, however, was very important for me to read because you describe how hard it can be for family members when there is secrecy, something I had not thought about in this way. I really appreciate your sharing your experience.
Regards, MaryOctober 15, 2022 at 4:06 am #102072
Thanks for taking the time to read through my blog. Sorry, that you are having to go through the same thing that I am going through. Having to keep such a heavy secret isn’t easy. Keeping it is taking a toll on me as well. That is why I started the blog. It is nice to just share my thoughts and feelings. I just could not keep it all inside anymore. How long has it been since your husband’s diagnosis?
Lynn AppleOctober 14, 2022 at 3:08 pm #102066GapSpectator
Hi Lynn. I read through your blog and it seems like a wonderful way to deal with the emotional toll from keeping this secret. I am also dealing with my husband’s secret cancer. I’m sorry you’re in that position and I imagine it’s incredibly tough for your husband not to feel as though he’s free to share his diagnosis with co-workers/friends. My 86 yr old mother lives with us and so she was told (since obviously he’d be unable to hide such serious “doin’s). And my husband told our adult son and daughter-in-law who live in Canada. But none of us are allowed to tell any other family members including his sister and my siblings, or any of his lifelong friends, or any of our very friendly and potentially helpful neighbors. My husband is a nice guy but he has a difficult, intense personality. The kind of person you either find to be a real kick or the kind of person you’d like to really kick, if you know what I mean, haha. Caring for him, and dealing with him, entirely on my own is wearing me down physically and psychologically. I hope to read good news about your husband in the upcoming months.October 14, 2022 at 12:19 am #102065
Back in 2020 my husband got diagnosed with intrahepatic cholangiocainoma. Due to his job we decided to keep this a secret. This has been really hard for me to keep. We have two kids 10 and 13 years old. A few days ago I started a blog to help me deal with the ups and downs of our cancer journey. You can find it here https://cancerandwealth.family.blog. Blogging has really helped me feel better and get through my fear, worry and sadness.
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