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Talking Frankly about Living with Advanced Cancer
Cancer | Last Active: Jun 18, 2023 | Replies (508)Comment receiving replies
Thank you for the reply. I think that just talking with people on this connect will help. Are there others with this rare clear cell ovarian cancer and auto immune diseases as well? I have been soooo positive through this treatment. But I think I expected to feel good now that cancer is in remission and I don't. The lung problem keeps me down.
Replies to "Thank you for the reply. I think that just talking with people on this connect will..."
Hi @jazzjen, I add my welcome, too. You asked if there are others with clear cell ovarian cancer on Connect. Yes, there are. Check out this discussion in the Gynecologic Cancer group (https://connect.mayoclinic.org/group/gynecologic-cancer/)
- Rare cancer: ovarian clear cell carcinoma https://connect.mayoclinic.org/discussion/rare-cancer/
You'll find discussions about Autoimmune Diseases here: https://connect.mayoclinic.org/group/autoimmune-diseases/
You also mentioned pulmonary rehab. I've seen members of the Lung Health talking about their success with pulmonary rehab and even special choir and harmonica groups for people with limited lung capacity. See these discussions:
- Pulmonary Rehabilitation https://connect.mayoclinic.org/discussion/pulmonary-rehabitlitaion/
- “Harmonica therapy” for chronic obstructive pulmonary disease https://connect.mayoclinic.org/discussion/harmonica-therapy-for-chronic-obstructive-pulmonary-disease/
Jen, has the pulmonary PT started to help improve your lung function?
Hello @jazzjen,
I just noticed that it has been a while since you last posted. I hope you are doing better. How are your lung problems? Any new treatments?
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Hello @jazzjen,
I also have a rare form of cancer, neuroendocrine tumors (NETs) mine is of the carcinoid variety. I have had three surgeries, 2003, 2005 and 2016. I understand what you mean when you say, "they say cancer is gone!!!! So why do I feel like it is not gone? I feel like it is still there waiting to take me down." I think of it as the "cancer cloud" and it can follow you around like a cloud if you allow it.
I take it that your lung problems are related to cancer or to the cancer treatment? Is that so? If so, it is very understandable that you would be very fatigued when you engage in regular activities of daily living, like taking a shower, cooking, etc. Without strong lung funtion, you can feel very tired, very quickly and this is normal.
My cancer and surgeries were in the upper digestive tract and so my post-surgery problems have more to do with food, digestion, concerns about absorption, etc. I am very fatigued as well.
The great thing about Connect is being able to connect with others without leaving your house and being able to sit while you do it! This is especially good when you have a low energy level.
Keep posting here on Connect. I look forward to getting to know you better.