How do you move on after treatment? (severe hearing-loss, neuropathy, weakness, brain fog, etc.)

J_Logan
J_Logan Member Posts: 1 *
in Long-Term Effects of Treatment #1

Hi,

My name is Logan. At 35, I was diagnosed with testicular choriocarinoma with mets to the liver and lungs. For men with this cancer, a bHCG level over 40,000 is associated with poor prognosis. Mine was 437,000.

One year, eight rounds of chemo including two that were high-dose with autologous stem cell transplants, an orchiectomy (testicle removal), and a liver resection later, and I've now been cancer-free for over a year.

I beat the odds. The researchers at Indiana University are the pioneers when it comes to the kind of cancer I had, and they told my doctor I was too far gone. "Just try to make him comfortable," they said. He didn't listen, and I survived. I should feel so, so lucky every day.

But…

Before cancer, I was an active guy. Not an Olympian by any stretch, but athletic. I golfed regularly, and enjoyed softball and volleyball. I also had a career in communication. The high-dose chemo treatments, with their platinum-based chemo drugs, absolutely destroyed my hearing. I have hearing aids now that allow me to get by, but I can't manage conversation in noisy environments. In groups, it's all just noise.

A year later cancer-free, but I suffer from severe-hearing loss, neuropathy, weakness, and brain fog. I'm married with four kids, and we're busy with our church, but I'm withdrawing more and more from everything. I'm alone, depressed, and finding it harder and harder to get out of bed in the morning. I don't know what I'm getting up for. I don't know what I'm working for. And I don't feel like I can tell anyone close to me how I feel.

How do you move forward when the life you were supposed to have is ripped so suddenly away? How do you recalibrate when you go from young and healthy to feeling like an 80-year-old with multiple handicaps?

Yes, I'm whining. I know that. I could have died. I should be so thankful. Which, of course, just adds to the guilt over all of this.

If you've made it this far through this, thanks for taking the time to read it. I'm treading water, but surely I'm not the first. Have any of you felt like this after treatment? If so, did you find your way out? If you did, how?

Comments

  • Arx001
    Arx001 Member Posts: 5 Member
    #2

    I’m still under treatment for a stage 3 rectal cancer, nearing the planned completion. I also have four kids and my aim is to stay alive for thirteen years until my youngest one reaches 20. I think setting targets is really important mentally.

    I had very mild tinnitus that got much worse after oxaliplatin. This is a 3rd gen platin derivative so there’s not much data on its ototoxicity - unlike carboplatin and cisplatin. However I would rather go deaf instead of having extremely loud tinnitus which would make me crazy. Is this any consolation? No but at least you could have a peaceful life in the correct setting, next to a forest etc.

    Re the weakening body - I am middle aged so I have some vision problems on top of some hearing problems plus the fatigue and so on. My aim is to start with baby steps after the completion of the treatment.

    On thing that helped me a lot was being grateful for being alive. I did this immediately on the second day of my cancer diagnosis for a period of several months until chemo fatigue and side effects reduced my comfort zone quite seriously. I am stil grateful but because of constant discomfort I find it difficult to express this gratitude. I will make a post on this hoping it may help some other person…

    Best wishes.

    Note: Also a top psychiatrist helped me a lot.

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