r/cancer • u/Lovie17AZ • Jul 24 '25
Patient The tears won’t stop
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.
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u/No-Camera-720 Jul 24 '25
You are not alone. Cancer has put lots of us in this box. I wish they would warn you before you start treatment, but then more would opt out and the fucking health care system wouldn't get to make money of us as we slowly degrade and die. Don't discount that your husband's commitment and feelings for you are more than pessimism would make them to be. Some understood what they were saying when they promised "in sickness and in health, better or worse". Positivity is a crock and eventually will collapse, but toughness and courage will serve us well. Me, I lean toward nihilistic fatalism and it works. No lost sleep. No tears, no angst, no asking why. I hope this goes to a better place for you, and it just might down the road.
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u/Extension_Sweet_9735 Jul 24 '25
Have you talked to your Dr about antidepressants? I started mine about a month ago and I think it's helped. I'm so sorry your going through this. Cancer is a beast! Sending you internet hugs and happy vibes!
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u/Lovie17AZ Jul 24 '25
Thank you so much for responding. I had been on them years ago but definitely open to giving them another go. Hugs. 💛
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u/Extension_Sweet_9735 Jul 26 '25
Give it another go. Pick up a new hobby. Or an old one. Find something not cancer related that makes you happy. Sending happy thoughts your way! 💜
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u/Mango106 Patient Jul 27 '25
This was my first thought. I couldn't possibly imagine living with cancer like this for 2 decades. And I'm certain that depression is a known risk for such patients. I know that cancer centers often have mental health resources for their patients. I hope she asks for help.
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u/Professional_Bus_307 Jul 24 '25
Sweetie, it’s true. Your loved ones may bear witness to this but this is your experience. You’re sad, sick, and scared and with very good reason. Ask yourself if you want to continue. Proceed accordingly. Tell your family and friends how you feel. Do the fun things you want to do, if you can. Finish the things you must. Live the life you have. I’m so sorry this is happening to you. I hope you find peace.
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u/YesBesJes Jul 24 '25
I’m sorry. I commend you for surviving - especially the mental strength you must have for getting through the last 20 years. Sending you so much love.
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u/Bermuda_Breeze Jul 24 '25
I understand how you can feel so lonely even with friends around you. Are there any support groups through your treatment hospital or an organisation for your type of cancer? I am part of two groups - one for survivors my age at my treatment clinic and another for my specific cancer. Sometimes through the week I keep a running list of issues I want to discuss. Other times I just spend the time listening to other people and store away ideas for how to deal with things for future.
Some of the things you say do sound depressed. I’ve learnt from them that it’s nearly unheard of for people to not need antidepressants for at least part of their treatment and recovery. I’ve been on them since before my diagnosis and I’m sure they’ve helped me stay calm and see things from other perspectives.
I hope you find a way that works for you to move forward with positivity.
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u/Lovie17AZ Jul 24 '25
Thank you so much for your kind and thoughtful response. I have taken part in support groups for cancer and you’re correct in that even if I didn’t speak I did not feel quite so alone. 💛
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u/Kamelasa Jul 24 '25
Maybe try them again. The one I go to doesn't give me a hard time for my defiant and complete lack of positivity. They can handle the darkness. Someone will relate.
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u/krunchhunny Jul 24 '25
Definitely seek out people with similar diagnoses.. I'm 'only' on immunotherapy now for aggressive breast cancer and feel I've gotten off lucky despite surgeries, chemo, radiotherapy and a shit load of drugs for 10 years so I'm so very sorry for what you've been through,it sounds awful. I met a lady online in my town whilst searching for a breast cancer support group (not a single one in my large town - Perth, Scotland UK) We met a few others and created our own little group and it is invaluable. Just being able to talk and cry and laugh and compare and commiserate is just incredibly good for the soul, I hope you find your people in your area, not being alone in your treatment and diagnosis means so much.
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u/Lovie17AZ Jul 24 '25
Thank you so much for taking the time to respond. That is definitely something I will look into more. Wishing you well as you battle this insidious disease. 💛
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u/HarryPouri Jul 24 '25
I'm sorry you're going through this. Sending love. Maybe they don't understand what you're going through but they do love you. Please talk to your doctor as well to see what they suggest 🫂
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u/Disastrous-Leek1508 Jul 24 '25
Oh sugar, I'm so sorry to hear that! Life can seem so unfair. Emotions can be paralyzing.
I am 31 yrs old and a mother of 3, at 26 I was diagnosed with uterine cancer. I went through treatment and am in remission. I thought my world got small when I had 3 kids young. Cancer made it even smaller. I felt like people gathered and looked at me with pitty. Then covid hit and I was completely isolated.. But once my hair came back and chemotherapy was over i thought it would get better... I swear the treatment left me worse off than before. I now have seizures, immune issues, GI issues, chronic anemia and so much more. I can't even drive because of my epilepsy. I was soooo free spirited, adventurous, bubbly and so involved with my kids. Now I can't leave the house. It's been months since iv left for anything other than appointments. I have 7 sibling who all live close.... I haven't talked to some in 4 yrs. Im more of a burden than good company I guess. My relationship has turned into more of a roommate situation too... we have been best friends since I was 6..... now I don't even feel that.... I think he stays for the kids. I used to cry a lot... but now I don't... idk why... I think my body is just done with that emotion. Why waste the energy.
So if you are crying. It's not always bad. Your body and mind are still strong enough to cry. Your heart cares enough to cry.. I would definitely try the depression medicine again. Do you have a hobby you enjoy? If not...start 12... that's what I do.... start all 12 and finish none lol maybe you will have more luck. I also stay off of social media. Instead of making me feel connected with the world. It makes me feel alone. No tik tok, insta, fb, snap or whatever else there is. Do you have a pet? I have a few lol they really can make my day and Make me laugh.... I try to laugh as much as possible. (Maybe I can send you a funny meme or video each day) But above all else. Just remember you are alive. You feel the sun on your face. You can hug your loved ones. Some aren't so lucky. Especially right now. So many places are filled with hate. You are not. You are filled with hope... I know you are.
Much love and many thoughts ❤️
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u/Lovie17AZ Jul 24 '25
I want to thank you for your thoughtful reply. My heart hurts for you and your family. Not one of us asked for this “new normal” and it sucks. I was much like you in that I used to be outgoing, loved being among friends and was fairly social.
I’m so very sorry that you are still so sick and that the treatments have affected you so badly. I’m in a similar situation and I am hoping the crap side effects means that Keytruda is working.
The spouse situation left me heartbroken. He used to be my person and now I feel like he’s someone I share space with. It’s been years and I too think he stayed because of our daughter and also he felt sense of obligation or duty to me. What was once a beautiful friendship/ relationship has deteriorated into an anxiety inducing feeling.
All of that being said your children won’t remember that you can’t drive or didn’t leave the house much. They will remember a mama who fought hard and loves them fiercely. They are lucky to have you.
I wish you strength and peace. Sending you a big hug. 💛
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u/Dilfy Jul 24 '25
So sorry you are going through this. What a testament to your character and perseverance. Can you speak with your medical team about switching from Keytruda or perhaps lowering the dosage? There have been many advancements in immunotherapies in recent years and there may be other options for you. Hopefully the side effects are an indication of an immune response to the cancer and your body fighting it!
My father is experiencing the side affects of head and neck cancer too (also diagnosed around 2003) and is now primarily on a liquid diet (feeding tube). It's very hard seeing him go through not just the physical side effects from it, but emotional and social. I don't think people like my mother and I can ever truly understand what it's like, unless we experience it for ourselves someday. I've tried to get him to reach out to support groups and speak with others going through it, but he is reluctant to do so. I can tell you from our experience, it is the furtherest thing from a burden. I would do anything to take away his pain and discomfort, I'm sure your loved ones feel similarly.
Funny enough I have a neighbor Lovie and am a resident of Arizona. Doubt that's what your username is a reference to, but it was a big enough sign for me to reach out. Pray you continue to fight and search for hope and quality of life you can begin to enjoy again! Much love ❤️
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u/Lovie17AZ Jul 24 '25
Many thanks for your truly kind and thoughtful response. I’m so very sorry that you are watching your dad go through this. I can tell he is very lucky to have you and your mom by his side. As difficult as it is to be a patient I know it affects the entire family and my heart aches for all of you. Coincidentally I am not named Lovie but I am in AZ. so hello neighbor. Sending you a hug. 💛
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u/FlyingAtNight Jul 24 '25
I can only offer love and virtual hugs. I wish this hadn’t happened for you. ❤️🫂
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u/seaweeddanceratnight Jul 24 '25
Have you tried some magic mushrooms? Helped be have a unique understanding of life. Sending you strength and kindness.
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u/Lovie17AZ Jul 24 '25
I have tried them but are suggesting on a regular basis?
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u/seaweeddanceratnight Jul 24 '25
Whatever works. I did a gram 3 different occasions, and came to the conclusion that this is part of my journey, and take everything you can from it. I know someone who micro dosed daily and that worked for them.
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u/Kamelasa Jul 24 '25
I made blue honey, kept in the fridge, and I just weigh out a little bit sometimes - sometimes every few days. "Microdosing." I should get back to that. Not trippy, just eases some tension, gives me some distance, somehow.
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u/mixmates Jul 24 '25
Over 6 months NED, sick most of the time. Peripheral neuropathy. Just existing in suck. We’re with you. Sometimes it’s hard hoping there’s a light at the end of a tunnel, any tunnel.
You get really philosophical about things, existence, trying to make things worth it. I’m sorry that you’re going through this. This is a group that cares, utilize it for your needs. Take care.
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u/Lovie17AZ Jul 24 '25
Thank you for saying that and I am sorry for what you are going through. 💛
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u/mixmates Jul 25 '25
I’m ok. It’s not that I can’t deal with it but I was trying to relate my experience to say you’re not alone. You don’t have to be afraid of death to want to live and the possibility of reaching a certain level of normality is reasonable. I’m beginning to see a light at the end of the tunnel and it has taken a year and a half to get there. Be optimistically stubborn. Be positive. Vent when you need to, bitch when you need to.
Live everyday.
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u/Temporary-Block6696 Jul 24 '25
I just read my comment and it's really not nearly what I wanted to say. Reach out; it wasn't my nature but I'm trying not to be the tough woman I know I'm not. I'm sending you lots of love. I'm here and so are the many other posters. Still not nearly what I wanted to express; I think I'm still trying to keep my own head above water these days but I know there's real love and support from people who are walking a similar path.
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u/Lovie17AZ Jul 24 '25
Thank you for taking the time to respond. I understand. I don’t think most of can put into words what we are truly feeling while fighting this insidious beast. I’m so very sorry you’re going through a tough time. I get you in that I feel as though I’m treading water grasping at straws to stay afloat. Sending you a big hug. 💛
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u/Temporary-Block6696 Jul 24 '25
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.
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u/Lovie17AZ Jul 24 '25
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. 💛
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u/Temporary-Block6696 Jul 24 '25
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.
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u/Lovie17AZ Jul 24 '25
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. 💛
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u/dopamine_sniff Jul 24 '25
I really wish I could give you a hug in person, but all I can do is offer love & hugs virtually❤️
I fucking hate cancer. I wish this never happened to you.
There is allot more stuff I want to say here but I don't know what's right or wrong or if something is too much, or weird. But I truly wish you the absolute best of best❤️ much love❤️
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u/Lovie17AZ Jul 24 '25
You seem like such a kind soul and I truly thank you for responding. I think we are all scared and that’s a normal reaction to being fucked by cancer. Stay strong my friend. Sending you a hug back. 💛
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u/Swimming_Anything_27 Jul 24 '25
All these feelings are understandable, and I'm glad you see them clearly. But you are not alone, there is always someone here, there are thousands of us. Seek out a local support group with other patients if you can, or at least try to do therapy in a way that is comfortable for you. Don't give up on living. You are still here. Every day remember that you can try to overshadow the pain and watch something cool, remember the blessing of having seen your daughter grow up and develop in college. I'm sure your daughter is very proud of you and has learned to be strong because she sees in you a woman who has been strong since the beginning of her existence. See the light of each day, which may indeed be the last, but if the lights go out, do you want to be looking at this horrible side of illness and loss or of gratitude for having come this far, for having a family, for having managed to have a child, for this child to be strong and courageous? I know you can get back on your feet, lift your head, go! Warrior strength. Cry all you need, but be sure to smile again soon and enjoy the last moments instead of regretting them.
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u/Lovie17AZ Jul 25 '25
I truly thank you for your kind response. I try to start each day with what I am grateful for. It can be as simple as waking up or seeing my dogs. I try to live by the motto that it could always be worse and yet lately it’s been so difficult to see the sunshine through the clouds. So many thanks for the reminder that some days I need to search a bit harder. Sending you a hug. 💛
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u/zebra615 Jul 24 '25
Sending good juju to you Lovie. You are not alone. I can relate to so much of what you said. I’m at the beginning of my journey. I’m amazed at what you’ve been through. I can’t offer much advice to you but I’m glad you reached out on this forum. I’m curious about magic mushroom micro dosing. Do you ask your oncologist for them?
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u/Lovie17AZ Jul 25 '25
I’m so truly sorry that you’re going through this. I wish you strength and peace and hope that you’ll soon be cancer free. I asked my oncology team and they were supportive and said it would not affect my current treatment plan. All the best to you and we’re here if you need us. 💛
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u/Throw_Me_Away_1738 tonsil- HPV status undetermined Jul 24 '25
Heard. So freaking hard. Have an internet hug << 💕💕💕>>
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u/oldfriend73 Jul 25 '25
Sending you love and strength and all the badassery ♥️ Cancer effin sucks. I just changed my antidepressant. The old one just wouldn’t cut it anymore. Please consider giving those another chance. Hang in there with this craziness.
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u/Lovie17AZ Jul 25 '25
Thank you for your comment. I’ve spoken with my team about both traditional antidepressants as well as ketamine therapy. Hoping for brighter days ahead for us both. Take care of yourself. 💛
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u/StandIll5435 Jul 25 '25
I had this conversation the other day with my aunt who is also poorly. Being ill is a very lonely place. Noone ever knows exactly what you go through. I'm so sorry you're feeling so unhappy at the present time. I wish I had some profound words or something to help, but I'll just send all my love and a big virtual hug. I was diagnosed with stage 4b cervical cancer in June this year so my own journey has just begun.
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u/Lovie17AZ Jul 25 '25
I am so truly sorry to hear what you are going through. I often refer to cancer as the beast no one asked for. It is scary and being ill can feel very isolating but this community is here for you if you need us. Right now I need you guys but that won’t stop me from continuing to respond and help other fellow warriors if I am able. Sending you a hug. 💛
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u/anonymous104180 Jul 25 '25
Was you also diagnosed with EBV(Mononucleosis)/CMV virus before your 2004 diagnosis given that you weren’t a smoker and also not a drinker? although if you eat bad processed foods that could also be the cause. Just curious :)
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u/Lovie17AZ Jul 25 '25
Hi. I was not. I’m just an unfortunate soul who despite a fairly healthy lifestyle got knocked on my ass at the age of 30 and have been fighting ever since.
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u/anonymous104180 Jul 25 '25
Thanks for the time, as a passionate researcher i was always interested in the cause and not only in the outcome. Today everyone is fixated on how to fix the outcome without understanding the cause.
Did you noticed anything unusual before your 2004 diagnosis? i would give some examples: strange recurring itching in same or different part of the body, change in your own voice (i don’t mean voice from child to adult but more the kind of voice that is often hoarse without a particular reason like cold or anything else, loss of weight without any reason, change in the quantity of produced mucus etc..
I am pretty sure symptoms before the onset manifested but were very subtle that majority of people ignored them. Also not only processed food but also processed beverage especially those with sugar are really a strong variable in the long term regarding cancer, did you drink on average these kind of beverage?
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u/Lovie17AZ Jul 25 '25
I would love to talk to you more about this. I have been searching for this answer for the past 21 years. I’ve yet to meet anyone who has had their cancer recur 20+ times.
I realize I misread your question about mono/EBV. I was diagnosed with mono when I was a freshman in high school but not with EBV and it did take me a while to fully recuperate. As a previously healthy person I remember questioning why it took so long for me to get better when I was only 15.
I’ve asked my team time and time again about the underlying cause and the best I get is that I have an “unhealthy” oral cavity. I always have and continue to take very good care of the teeth I have left and hearing I have an unhealthy mouth doesn’t placate me.
We never had processed sugar or soda in the house growing up. I never really found a taste for soda or sugary drinks. When I left for college I ate sweets but not in excess. Since my mid 20’s (currently 51) I’ve eaten well (when I was able to eat real food). I’m a pescatarian but currently due to treatment induced mucositis I am mainly on a liquid diet.
I’d love to hear more about what you think the underlying cause could be. I’ve often thought if I could eradicate the source I might finally be able to live a somewhat fuller life.
I think it’s wonderful you are doing this and I thank you for taking the time to reply to me.
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u/anonymous104180 Jul 25 '25 edited Jul 25 '25
Mono is mostly caused by herpes viruses like EBV, CMV, HHV-6 and other that causes mono like symptoms like HIV, toxoplasma gondii, rubella virus and adenovirus. So we know you had mono or mono like symptoms but we don’t know what caused it. The Monopatch test for EBV don’t detect EBV viral genome because you need to do the specific antigen test to check really what there’s in your blood stream like the VCA-IgM, VCA-IgG, EBNA-IgG, EA (Early Antigen) test. These 4 test tells you for example what’s really going on regarding EBV viral load in your body, if the virus is reactivated (lytic phase) or if is dormant to hide from the immune system (latent phase).
So you basically have 51 years, got mono (we don’t know from which virus unfortunately because you need to test it to know it which viruses are in your blood currently) in 1989 at 15 years old and then got diagnosed with cancer at 30 years old in 2004 (basically 15 years after getting mono), don’t know the stage of cancer but i would assume that it started way earlier than 2004 so potentially 5-10 years before 2004.
I have other questions to ask if you don’t mind, when you got mono, after how much time did you recovered from the common symptoms (common symptoms are spleen enlargement, loss weight, jaundice, sore throat, bloating in digestive system and fatigue etc..) if you remember if you recovered at all or if it just got worse meaning chronic mono or EBV which usually triggers other issues like IBS, Chron Disease etc
Also another question, did you had from 15 years old other diseases like diabetes 1 or 2, or basically any other sort of medical condition (injuries from incidents etc..) or really stressful period of your life that basically put your immune system under suppression (or if they prescribed to you steroids for different reasons)
I am asking this because if you got Mono from EBV (we don’t know you need to do the test to know it), EBV is an oncogenic virus, meaning it promotes cancer but not alone, it needs other factors to do it like bad diet, stressful environment, sleep deprivation, smoking or drinking on good amount etc…
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u/jasongu79 Jul 25 '25
Don’t give up! I’ve been battling head and neck cancer and, for the past eight months, have followed Joe Tippens’ protocol alongside Ivermectin. During that time, my tumor hasn’t grown. I hope this gives you some encouragement.
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u/Lovie17AZ Jul 25 '25
It does and I will look into that. Thank you for replying and sharing your experience. I hope you kick cancer’s ass. 💛
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u/loma24 Jul 25 '25
It sucks. Cancer sucks, there is no doubt about it. You kept it up for your kids, and I commend you for that. Now, keep it up for you! Every day there are breakthroughs and yours might be next! I am so sorry about how things are now, but I will be praying for you to have peace and hopefully find some joy in life.
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u/Lovie17AZ Jul 25 '25
I thank you for your kind and thoughtful response. I try to maintain my positive outlook and hope to one day ring that bell. 💛
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u/zebra615 Jul 25 '25
How’s it going today Lovie? Hope you’re feeling a little better. If you do feel a bit better jump on your plan. I know when I feel bad, it’s like I can’t remember tried and true simple things that improve my frame of mind. Like listening to music, dancing, taking a bath, pulling weeds, taking a walk, petting my dog, reading a good book etc. I’m also going to go to a support group. It’s always good to meet and talk to people going through similar things. It seems easy but when I’m sad and upset my brain forgets, shuts down and I end up doom scrolling or some other useless way to get a dopamine hit. I’ve noticed you’ve reached out to other people here to offer support too. That is excellent. I believe it’s almost impossible to not to feel better when we reach out to help someone else. Take care.❤️
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u/Lovie17AZ Jul 25 '25
I wanted to thank you for your kind comment and for the reminder that we can still find joy in the simplest of ways. My daughter is still home and she along with my dogs bring infinite joy. I am trying to be kind to myself and this community and you have helped me know that I’m not alone. Thank you and I wish you well. Sending a hug. 💛
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u/Mango106 Patient Jul 27 '25
As others have said, you are not alone. Please take care of your mental health by talking to your treatment team about your mental health. I would bet my last dollar they want to know and could steer you towards resources to help you with this. I'm not a professional therapist, but I am a nurse. And it isn't hard to believe that treatment of depression is an integral part of dealing with cancer. Please keep us posted about your progress.
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u/Lovie17AZ Jul 27 '25
Thank you for taking the time to reply. I have sought out therapy in the past and found it helpful. I have had 20+ recurrences and only recently my team has suggested speaking to someone. Depression is a very real part of the diagnosis and should be addressed. I wish you well. 💛
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u/truly-immaculate Jul 28 '25
I’m sorry you’re going through this. Cancer is a diabolical disease. The toll it takes on your mental health is often worse than the disease itself, but continue to dig deep and never give up. Do little things that you enjoy that offer some temporary relief or distraction and don’t let it define you.
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u/Lovie17AZ Jul 28 '25
Thank you for your reply and for the reminder that cancer is not who I am. I needed to hear that. 💛
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u/Meowie_Undertoe Jul 24 '25
Sending you lots of virtual strength and peace today. 💪🏽🙏🏽Today, you can borrow mine. But I'll need you to stick around to help me when I need it! Hang in there! 🤍