The tears won’t stop

[u/Lovie17AZ]

Hi all. A brief intro…51 yo female diagnosed with oral cavity cancer in 2004 - non smoker, non HPV - 22 surgeries, partial glossectomy, missing lower teeth due to cancer surrounding the tissue and thus had to be removed. Talk with a noticeable lisp and mainly existing on a liquid diet Currently undergoing immunotherapy (Keytruda)

I am struggling lately more so than I ever have during my 20+ year journey with this horrific disease. I used to lie to myself that I was not chronically ill. I maintained my positivity until I was no longer able. My only child left for college last fall and it’s fair to say the wheels have fallen off. I kept it together for 18 years so my daughter wouldn’t be scared.

The Keytruda has made me far sicker than the cancer ever did. In addition to playing side effect roulette each day when I wake up I cannot stop crying. I am angry at the cancer and I hate how small my world has become (basically shuttling between my house and treatment). I think my husband stays because he feels badly for me. We once had a great love that has settled (I think in large part to my illness) into a roommate situation. I feel like I am just waiting to die and as stated the tears won’t stop. I have the most amazing friends yet I am still so lonely. I feel as though not one person in my orbit truly understands what I am going through. I feel so alone and so scared.

[u/Temporary-Block6696]

I have a relatively new diagnosis. I haven't been in treatment as long but I know how small your world shrinks from home to treatment and back. I don't know how people maintain a positive attitude but I continue to try without great deal of success. If you have amazing friends it seems that they would be willing to lessen some of the loneliness. I think the people who still come around are often stronger and more willing to share some of the burden than we give them credit for. I feel alone and scared but who wouldn't? It's a lonely road to walk down but your husband is there. Please don't discount how much he cares.

[u/Lovie17AZ → u/Temporary-Block6696]

I’m so sorry for your diagnosis. None of us asked for this. The best advice (not that you asked 😂) would be to remember that it is NOT our job to make others feel comfortable with the fact that we have cancer. The true friends will stick with you and love you hard. I will hope you kick cancer’s ass. This community is an amazing support and we’re here if you need us. Sending you a hug. 💛

[u/Temporary-Block6696 → u/Lovie17AZ]

Thank you. It has been such a curious, painful experience. My mother, her whole life, obsessively worried about leukemia and now I have large cell lymphoma Stage 4. I don't even like referring to it with it's proper name; it's just something that's trying to kill me. I usually don't wear my wig, my hair fell out after first chemo and it's amazing how strangers will stare and want to say something. I'm glad I found this community. For almost 5 months I kept on going to ER, which I now know was wrong place, telling them I had something very, very wrong with me. Finally my cardiologist listened to me and called in various consults and i was diagnosed. I practiced trial law most of my career and have always considered myself a tough woman. I have completely fallen to pieces over my cancer diagnosis. I cry every day. It's not that I think I have been singled out unfairly; bad things don't always happen to someone else. It's that I am so scared. I think Americans in particular think we are promised a long life. I had never been sick before and now all I do is have painful things done to my body . I am a fighter but I haven't been able to sustain a fighting mentality. Again, thank you for your kind words; I will take them to heart.

[u/Lovie17AZ → u/Temporary-Block6696]

The fear is very real and very valid so even though we fight valiantly we are allowed to grieve what could have been and/or the reality of our situations. I hope you’re able to give yourself some grace. Hugs. 💛