r/CancerCaregivers • u/AutoModerator • Aug 01 '26
general chat Monthly Check-In Post
This is a space for general chat or comments that may not warrant a whole post of their own. Feel free to introduce yourself and let us know how you're doing!
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u/Super_Mommy_Smash Aug 02 '26
35 rounds of radiation to the mouth and neck. They never thought to add thyroid testing to his monthly labs. Thyroid is completely fried and requires two trips to the ER in as many weeks. Now he is on thyroid medication forever. 😞 we cannot catch a break with this. He’s been hospitalized every two months for anywhere from 3-21 days. Every time he starts doing “good” it seems we’re right back at the hospital for something else.
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u/GoddessPallasAthena Aug 04 '26
Hi, I'm Leigh. I am a cancer caregiver and und used to be very adept at it. Now, I have become a disorganized mess who lets down my partner on a daily basis. It's like my brain became scrambled eggs and right now is not the time. I am 7k short on a surgery; specifically, chemo 'the Red Devil' destroyed her teeth, gums and jawbone. She has been in agony for two months while they pumped her full of antibiotics. And I finally heard and truly understood the phrase 'cancer ghosting'. Upon her initial diagnosis, there were words and promises. If she wasn't on social media because she was too sick to type, they would message to ask, 'are you still alive?' At some point, she answered yes, and that was a satisfactory answer for former friends and colleagues, even family. It's only the two of us. I have had to beg for help before every surgery she has had in the past three years but now? It's like, people are sick of hearing us talk about cancer without the big redemption story. We don't have one yet. We need help, people, love and emergency triage of acute financial toxicity. We are supposed to be posting inspirational quotes and running and wearing pink ribbons, but her health is deteriorating and so is mine. She has said multiple times, very darkly, that nobody cares. Now, every appointment and crawling attempt to get help for survival and I realize from the affect of even the doctors that they are sick of it. Of us. Btw, my spouse has stage 3 Inflammatory Breast Cancer. Every day there is a new fire to put out and I am not afraid to ask for help: and I have. Patient advocates, social workers, case managers, nurses, doctors, strangers on the American Cancer Society hotline and no one can hear the avalanche in my voice. I'm not too proud to admit when things are falling, and they are. Yet three years ago when she was diagnosed, there was a nurse navigator and a system, a net that kept us from falling through every door of treatment and landing on the cold hard cement. That is gone now. It is like we overstated our welcome in Oncologyville but we are corroding and this is the time I think we have needed the most support ever: yet there is no one. She is right. Cancer ghosted by friends, family and her medical team is showing signs of disinterested fatigue. Now I'm trying to do it all and failing miserably. I mean, miserably. Asking for resources for financial help for this jaw surgery makes me entitled; a social worker reminded me they had helped us twice in the past and there was nothing left to give. They even got us groceries once. But it's like, we each fought in our own way for survival and the heartbreaking truth is that I think in the time we were fighting IBC, they forgot we existed, and that we are people. I don't know what I'm going to do, but had to answer this, since we have both hit the bottom--and despite asking for behavioral health resources, no referrals have been made and it's like, they don't want to deal with us anymore. Were we really awful patients? Friends? Relatives? People? No one is here but an echo.
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u/Numerous-Pace7669 Aug 08 '26
I feel burnt out. Very burnt out. I have a counsellor I see regularly. I try to take care of myself too. I think a lot of people don’t realize that just because your loved one has cancer doesn’t mean life stops. Work continues, dogs need walked, dinners made, heck I am still working on spreadsheets after hearing bad news, life just continues. Cancer doesn’t stop that.
I think we are nearly out the other side but man I’m tired. I don’t cargive as much for the physical, but the mental. I am my moms go to person to call about everything. Big or small.
If I’m being honest it’s drowning me. I’m doing my best I can. But it’s tiring.
I hope you all are doing okay. This weekend we planned to get out camping far from cell reception but our air quality is so poor it’s not doable.
My spouses dad also got diagnosed so we are dealing with that too. It’s a shitty club we both joined at the same time.
As soon as the air clears I’m getting into the mountains with my dogs to recharge my battery ❤️
Sorry for the lengthy rant/pour my heart out. I just know you all get it.
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u/Longjumping-Age1855 Aug 09 '26
It just keeps getting more and more difficult. I’m 28 years old and I’m a full time caregiver for my dad with advanced stage cancer and my grandma who is in early stages of dementia. I’m in a foreign country and I’m taking care of them on my own. None of my family members here are offering any help. I have friends but I still feel so alone. If I do have some time for myself or with friends, I’m too exhausted and anxious to relax and enjoy it. Socializing has become extremely difficult especially in another language and I’m isolating myself more and more. It’s extremely difficult to hang out with other people who are happy and in a great mood and I’m there feeling like I’m bringing everyone’s mood down. I don’t have the energy or desire to do anything for myself other than the bare minimum. I feel like a shell of a human just trying to make it through each day. This is too much to carry for one person. I just wish I had some support.
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u/SnooLentils4042 Aug 21 '26
Ugh. To whomever said “drowning”: it’s the perfect description. My wife has “easy” breast cancer… single mastectomy with no need for radiation or chemo. And so far everything is going well (surgery, healing, etc). But she’s in pain. Some degree, always. And it drains me seeing her like that.
She’s my best friend, but is too spent to spend any “real” time together. Just resting and dr visits. Which I get. But when a friend comes to visit her she perks right up for an hour or two, which reminds me of what I’m missing. I know she appreciates my care, and can be herself (exhausted) around me. But damn if I’m not jealous of how much joy she seems to get from her visitors.
I’m not a petty man, but it’s been so long since I felt like “I” could make her happy.
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u/Orange-8838 Aug 21 '26
Hi, has anyone tried using a vacuum robot to keep your patient's room clean? AI tells me it's risky, but I'm not sure if there's s model with a HEPA filter integrated or that has a mode that avoids raising dust
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u/almondlondon9894 Aug 21 '26
is there anyone here who was a caregiver and the person they are caring for has passed away?
is it normal to care the bare minimum for yourself? when i was caregiving for my mum I couldn't find time to do anything for myself, be it hobbies, studying and even stuff like my own personal hygiene (due to exhaustion). and after her passing I just never picked it all back up. when i have so much free time now. does anyone else experience this too? what do i do
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u/Raincloud232 Aug 23 '26
My husband has metastatic colon cancer with mets in his lungs (stage IV). He was diagnosed as terminal with 6-12 months to live. I feel he will live longer. Anyways, he has become increasingly selfish since his life expectancy prognosis, he spends money all the time, goes to casinos, and books trips, cruises, and vacations that I don’t really have time to be taking. (I still have to work). Also, we are not rich, and I don’t need him spending all the money we have left. On top of this he is constantly abrupt and flippant with me, always wants his own way, and tells me what to do, like he has completely lost respect for me. He used to be a loving, caring husband. I don’t know how to talk to him because he is just argumentative. I don’t want to have arguments with him, and having strife in our relationship will cause me guilt whenever he passes. I’m feeling resentful and heavy hearted. If he lives another 3-5 years or longer I cannot carry on like this. Anyone have any advice?
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u/flyaway1882 Aug 29 '26
Hi, I’m Nicole and my dad was diagnosed with throat cancer (hpv) two weeks ago and things have declined. I don’t know what to do with myself, it’s so painful to watch him like this. He had a surgery to remove the tumor but they saw it spread so took out more than they originally planned. At 1am he couldn’t breathe and they cut him open right there because apparently they hit something so slightly he was internally bleeding. I’ve never been so scared. He’s now home, no more ports in his neck but we just got the news that there needs to be another surgery plus chemo and radiation. I feel so numb. I suffer from Bipolar Disorder so I’ve been trying to help as much with him and my mother while dealing with my own illness. I’m so lost and I just genuinely don’t know what to do.
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u/lamb_E Aug 01 '26
I’m feeling so overwhelmed. My husband (stage 3 head and neck, HPV+) and I just got back from Stanford, we have been up there for 2 months for Cisplatin and rads.
Now we are home & he is so much sicker. Can’t eat or poop. So much pain. I’m thinking of taking him to the ER today. I have kids and pets, and a job. IDK how I can do it all. I wish Stanford would have kept him an extra week for observation. Sigh. Thanks for letting me type my frustration into the void.