The Colon Club

Hello everyone. I have been following this forum for years, since my DX in 2020. But I've always been very reserved on the internet, and I ended up never posting anything.

More than answering my questions, which were many throughout my treatment, I come here whenever I need to cheer up, as I spend hours reading posts from those who have faced what we face and won their battles. Long story short, since my DX, I have gone through almost all available treatments. If that metric that 10,000 hours of practice makes you an expert on a subject is correct, I'm almost there when it comes to my experience with chemotherapy and other therapies - be them alternative or not. I've always tried to treat my ilness as a parallel activity, trying my best not to think about it. For years, when I felt down, I felt deep in my heart that the harsh times I had were solely because of the treatment, and not because of the tumors.

However, since October, I have been experiencing a sharp decline in performance: a persistent cough (this week, for the first time, I coughed up blood) and a considerable decrease in respiratory capacity. My blood tests have always been perfect – next week I will know how is my current CEA level - last I checked it was 4.7. If it were not for the lung nodules which insist in not stop growing, I would say that I am in good condition. I don't look sick at all, at least this is what I hear from my colleagues and family.

When I received the diagnosis four years ago, I asked God for10 years more years– my daughter was 8 years old then and I only asked to see her grow up until she was 18 and become an adult. From time to time I see that I asked for too much, and I am always negotiating with HIM an adjustment within what I think HE considers possible. My latest request is that I am given at least two more years. I am totally not afraid of dying, but I am afraid of leaving my daughter without her dad...

Has anyone here experienced a rapid decline in quality of life only to recover afterwards? Should I keep my request for 2 more years?

Not the same but ... a few months ago, I started having some very troublesome breathing issues. I went from easily walking 2-3 miles at a time to barely being able to walk a block without having to stop to catch my breath. On top of that, I started having chest and back pain, and pain in my left arm. The arm pain spooked me but I'd had a recent shoulder injury so it was easier to discount that - but the breathing, chest, and neck pain was very concerning, to say the least. I have several lung mets so, of course, I assumed the cancer had exploded and this was the early stage of decline. I was doomed. Well, I was wrong, wrong, wrong. The cancer had not exploded; to the contrary, my next scan was filled with "stable" and "unchanged." In my case, my symptoms were caused by a new food allergy and a combination of high humidity and dust that triggered some asthma. Once those issues were addressed, no more symptoms.

Shortly after I was diagnosed, a dear friend gave me a piece of advice: don't get ahead of the data. My experience a few months ago was a reminder of that.

zephyr wrote:Not the same but ... a few months ago, I started having some very troublesome breathing issues. I went from easily walking 2-3 miles at a time to barely being able to walk a block without having to stop to catch my breath. On top of that, I started having chest and back pain, and pain in my left arm. The arm pain spooked me but I'd had a recent shoulder injury so it was easier to discount that - but the breathing, chest, and neck pain was very concerning, to say the least. I have several lung mets so, of course, I assumed the cancer had exploded and this was the early stage of decline. I was doomed. Well, I was wrong, wrong, wrong. The cancer had not exploded; to the contrary, my next scan was filled with "stable" and "unchanged." In my case, my symptoms were caused by a new food allergy and a combination of high humidity and dust that triggered some asthma. Once those issues were addressed, no more symptoms.

Shortly after I was diagnosed, a dear friend gave me a piece of advice: don't get ahead of the data. My experience a few months ago was a reminder of that.

Good advice,

Just a few months ago i was freaking out because I had a "tickly" chest and constant cough, it has now gone away and I believe it was just a common chest infection or something.

Don't let your worry get ahead...When was your last scan? How fast have the nodules been growing time wise?

bar80,

Solid advice has been given thus far. I just wanted to add a few things. First, nobody knows how much time we have left. You could live several more years or you could be hit by a car tomorrow (I hope not!). Instead of worrying about how much time you have left, I would focus on the PRESENT. That way you can spend the time wisely with your daughter and make precious memories with her that will last a lifetime. That is what matters, right??? I know you are carrying a huge burden. Have you considered talking to a therapist or a counselor? I'm a huge proponent of therapy. I think it would be helpful to you to talk to someone about your thoughts and feelings.

Good luck to you and keep us updated,

Paige