I’m new here & so scared!!!

Stephb5

My name is Stephanie, I am a 44 year old wife & mother of 3 AMAZING boys…men, they are 25, 22 & 19. I have been married to my husband for 25 years, January 2, 2025 we will celebrate 26 years of marriage!!! My husband Bob, 46 years old was diagnosed in May of 2021 with stage VI renal cell carcinoma. They immediately removed his sick kidney. After healing from the surgery, he then started immunotherapy which didn’t work for him. Shortly after stopping immunotherapy, his cancer went external to his neck. He had that removed & once healed he started a round of chemotherapy. After I believe 8 weeks of treatment he took a break. During that break, his cancer went to his brain. He did a treatment of gamma knife & the one treatment got rid of it. Shortly after this, his cancer went external again & popped up on his nose. Unfortunately, they couldn’t remove it, so he began a 3rd round of chemotherapy treatment. Praise the Lord, it cleared it up, but unfortunately like most treatments he was very sick. He decided to stop treatment early. We talked & he said he didn’t want to continue treatment. I supported his decision, this was in October of 2022. With all of this his one “healthy” kidney is now at stage 3 Kidney disease with about only 60% function. Since his decision to stop treatment, we have been monitoring him with regular PET scans. The couple of tumors he did have, have been stable until a couple of scans ago. His oncologist mentioned radiation. Just before he started radiation treatment he severely herniated a disc in his back which needed surgery. Surgery went great & he could feel an immediate improvement. Two weeks after surgery, he became very ill. I rushed him to the ER. They had to do an emergency surgery to clean out his back, it was severely infected, culture came back positive for MRSA. He was sent home on IV antibiotics for 6 weeks. Two weeks into his antibiotic, he began to get very sick again. Luckily the morning after the night he started running a very high fever, he had an appointment with the surgeon. We got to his appointment & they immediately admitted him back into the hospital to find out he now has double lung pneumonia. The antibiotics were failing him. They changed his antibiotics & after a week in the hospital, he was sent home on another 6 weeks of IV antibiotics. This is how we spent our summer. The day after getting out of the hospital from being diagnosed with pneumonia, my husband waked into his first of 15 radiation treatments. After he finished his radiation, he had another PET scan, this was middle November, unfortunately, his cancer is active & spreading. He said that he is tired of being sick & in pain, due to how sick he has been all summer. I respect him, his decision & support him 100%. Unfortunately, I hear so many moans & groans during the night, it breaks my heart, because he hurts & there is nothing I can do. This is so hard to go through financially & emotionally. The unknown is so scary!!!😢

Stephb5

https://csn.cancer.org/discussion/328748/i-m-new-here-so-scared

I should have proofread before I posted, my husband has stage IV renal cell carcinoma.

stub1969

I'm sorry you and your family are going through this, Steph. The toll cancer has on the patient is evident, but many times we forget about the caregiver and the toll this cancer journey has on them. You and your husband have agreed on a path to follow, which isn't going to be an easy path—especially with the pain and discomfort he will have. Has he been up front with his medical team? If not, I'd encourage him to have a conversation about this so they can support him with pain relief.

We're here to support you through this—just reach out.

Take care of yourself.

Stub

Stephb5

https://csn.cancer.org/discussion/comment/1719423#Comment_1719423

Thank you so much Stub!!! Yes, he has been up front with his oncologist, she is very understanding & hasn’t pressured his decision. I am a little worried, when we saw her in November for the results from his PET scan, she did offer him another chemo treatment, he declined. She never pressured him, but did say we’ll talk about it again depending how his scan looks in February. He has already let me know that he will politely decline again. It just breaks my heart, because he isn’t his normal perky self. I’m noticing he isn’t eating as much & tells me how tired he is. This isn’t easy at all!!!

Arx001

You are very right to be afraid, anyone in your shoes would be too. You are a caregiver but you are facing extreme stress and responsibility on your shoulders and someone needs to take care of you too. One thing I may recommend is to locate a highly qualified psychiatrist for your husband (and perhaps also to support you) and a qualified financial advisor for you. These two can make a huge difference for your family. If that’s not possible please talk to people you know and trust for emotional support and financial advice.

I believe more intensive pain management should help as stub1969 suggested before.

This wouldn’t be any consolation but my aim as a stage 3 colorectal patient is to stay alive until my youngest child reaches 20. Your children are already at this age and to me that’s a major life accomplishment. My humble suggestion is to ease things, to take care of yourself emotionally and financially, to establish a better pain management regime. Act like he is on palliative care until February. If he is doing better emotionally by then you can talk about a new chemo.

I hope I wasn’t intruding as I definitely didn’t mean to.

Best wishes.