Liver Cancer

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    Struggling With Guilt and Grief After Losing of My Husband

    Nobody warned me about the guilt. I have experienced grief and loss before, and am aware of its nuances and complexities. But I wasn’t prepared for the debilitating guilt that courses through me on a regular basis as I grieve the loss of my husband. I am inundated with regret and an impotent yearning to have a “do over” so I can get it right. All I’ve ever wanted was to do right by my husband, and I can’t help but to feel like I failed him in his last moments, and continue to fail him as I learn to navigate life without him. Five years ago, my husband was diagnosed with hepatocellular carcinoma (liver cancer). There is no cure for liver cancer, so for four years, he underwent various treatments to keep the cancer at bay and extend his life as much as possible. The side effects of the treatments impacted his health, and prevented him from being able to continue to work. However, between treatments he often felt “fine,” and seemed as strong and vital as I have always known him to be. On an average day, there were very few outward signs of the cancer that was lingering within, and people often declared how “good” he looked. It was sometimes easy to forget that new tumors were continuing to appear even as the treated tumors were shrinking, and that this insidious disease would inevitably take his life. In my eyes, my husband was still fit and vibrant and, despite his small frame, was as strong as a bull, mentally as well as physically. Despite the oncologist’s life expectancy predictions and everything I had researched and read, I continued to naively entertain visions of our lives together in the decades to come. In the Fall of last year, we were given the news that the cancer had metastasized into his lungs, and that there were no more treatment options available. My husband had less than a year of life remaining. The prognosis shocked me. My husband said that he didn’t feel like he was dying, and he certainly didn’t look it. He had lost weight, was more fatigued than usual, and he had buzzed his hair short because small patches of hair had fallen out, but he was still living his life as he always had, and assisting me whenever I needed help because of my own disability. My husband was determined to stay at home for as long as possible, and that’s exactly what he did. I was determined to honor his wishes and care for him as best as I was able, and that’s exactly what I did. But I was unprepared for his rapid decline, and because of my disability, I was unable to provide the care I so desperately wanted to. When it became apparent that he needed more extensive care, he agreed to be transferred to hospice. I was relieved that he could receive the safety and care that I was unable to provide him. The transport team came to pick him up, and I packed up a bag and headed to the hospice to meet up with them. Once I was satisfied that he was settled and sleeping in his quiet and cozy room, I went home for much needed rest. The next day, I returned and spent several hours with him. He slept the whole time, so I sat and talked to him, played music, and reminisced about our years together. I spoke with the doctor, who said my husband was in his “last weeks,” and described what they look for in a patient’s final moments before they pass so that I understood what to expect. I returned home that day with the words “last weeks” reverberating through my mind, determined to be there for him every day for as long as necessary. Just after I had crawled into bed that night, I received a phone call from the night nurse saying that my husband’s breathing had changed, and that I should come now. “Wait, that can’t be,” I thought to myself, “The doctor said ‘weeks’!” I leapt out of bed, rang my caregiver, and called for a wheelchair accessible taxi. My caregiver helped dress me, and we anxiously waited 25 minutes for the taxi to arrive. When we arrived at the hospice, a nurse greeted us, escorted us into the elevator, and pressed the button for the second floor. Then he turned to me and said “I’m so sorry. Your husband passed away 10 minutes ago.” I was stunned. As pain lanced my heart, and tears flooded my eyes, a tsunami of guilt slammed into me. I had failed him! I wasn’t there for him in his last moments, and he died alone. I was a selfish person, and a terrible wife! Why didn’t I stay with him that day instead of going home? Why did I wait for a taxi? I am ambulatory, so why didn’t I just leave my wheelchair behind, and have my caregiver drive me? As the quiet words of the head nurse washed over me, I pummeled myself with hateful names and sharp accusations, replaying my poor choices and their alternatives over and over in my mind. Two and a half months have passed, and though I am now learning to cope with it, every time I think of that day, I shed hot and bitter tears of guilt. And that is not the only reason I feel shameful. Over the last few months, I have encountered several new circumstances that have only reinforced the feelings of guilt that seem to ride in the wake of the grief that permeates my life. About a month after my husband’s passing, I received a group life insurance payout from his employment. It is a comparatively small amount as far as life insurance goes, but it is more money than I have ever possessed. Aside from paying for cremation and memorial costs and a few gifts to loved ones, the funds sit untouched in a savings account. There were some things my husband had wanted to do before he died, but we were unable to afford it. The irony of now being able to afford it fills my heart with sorrow, and I cannot bring myself to use those funds without my husband to share it with. Every time I consider using that money for anything, I remember why I received it in the first place, and guilt prevents me from going ahead with my plans. A little time has passed since the memorial, and I am trying to live my life without my partner, but the days feel longer and lonelier. I have been trying to busy myself with various activities to occupy my mind and fill the many hours I spend alone. Sometimes I’ll go for hours without thinking about my husband, and when I realize it, I feel a pang of guilt. And if I’ve been enjoying myself, the pang becomes sharper and more intense. It makes me question my love for my husband and my sorrow for his passing. I feel cold and callous for “moving on.” Recently, I have been struggling with thoughts of what my future entails. When I married my husband, I assumed I would share the rest of my life with him. I had visions of growing old together, secure in the knowledge that my special person would be by my side throughout my life. I wonder if I will ever make another connection as special as the one I had with him, and I fear I will spend the rest of my life alone. Each time these unbidden thoughts come to mind, shame washes through me, and I am disgusted with myself. I just lost my husband! I have absolutely no romantic desires, and zero interest in dating for a very long time, so why would I be thinking of such things? It makes me feel like I’m subconsciously wanting to replace my husband with someone new, and this fills me with self-loathing. At first, I was unable to talk about it with anyone, fearing they would see how selfish I am, and confirming that I was dishonoring the memory of my husband. But when I finally found the courage to share these thoughts and feelings with loved ones, I was surprised and relieved by the support and validation I received. I discovered that I’m not alone in this, that my experiences and thoughts and emotions are quite common. Perhaps even…dare I say it?…normal. This knowledge has not put an end to the moments of guilt that I still frequently experience, but it is easing the ugly self-talk I’ve been flogging myself with over the last few months. After talking to a number of people about my husband’s last moments, I’ve learned that not being with him at the moment he died is far from unusual. I have heard so many stories about people who “just stepped out for a minute” to go to the bathroom or take a walk, only to return and find their loved one had passed while they were gone. It was once suggested to me that, perhaps, the guilt I feel is actually a testament to how deeply I loved my husband. After all, if I did not love him, I would not feel so terrible about letting him go. These kind and gentle words gave me a fresh perspective, and helped me feel much better about myself as a wife, friend, and human being. I am beginning to forgive myself. I am beginning to see that I am not selfish or callous or cold. I am grieving the loss of someone immensely special to me, and it is a complex and intricately nuanced process. There is no “right” way to grieve, no step-by-step guide, no chart or timeline by which I can gauge my healing process. I don’t know how long it will take, or whether I will ever stop feeling these pangs of guilt. But I’m recognizing that the healthiest way to move through this is to remember that I’m not alone in feeling the way I feel, to allow myself to experience whatever comes up, and to try to be gentle with myself along the way.

    Community Voices

    I hate Cancer!!!!!!

    My sister is dying from cancer. It has progressed to the point the the hospital sent her home with hospice to die comfortably in her home. I'm anger and sad and scared. How do I do this life without my big sister? 💔 who will listen when I am down and make no sense? Who will advise me and tell me its going to be okay? She is too young to die she is only 59.Her older years have been stolen from her. I'm unbelievably broken hearted! I don't want her to go yet I had to give her my permission 😫 and tell her not to worry about me. She told me so calmly over the phone that she wasn't going to get any better and wouldn't be talking to my again. What choice did I have but to tell her it was okay. #Cancer #Depression #Loss #LiverCancer TerminalCancer

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    Support for loved ones and alcoholism

    Hi all,

    I need some help today. My husband and I both struggle with anxiety and depression, and recently, my father in law’s alcholism has taken a turn for the worse. He isn’t working right now, and we found out that he’s just been drinking all day alone at home. He calls my husband drunk and lies about his drinking. He was put into two programs within a month, and left after 3 days. He does not want to get help and has admitted that to my husband.

    I think the hardest part is that he called everyone in the family lying about having liver cancer. We legitimately thought he was going to need serious treatment, but then we discovered he lied about the whole thing.

    I know that recovery is a long, lifetime process, and we are trying my best to support my father in law. However, does anyone have advice for supporting my husband? My husband is wrecked with the idea that his father is unwilling to get help and lied about having cancer. What do you say or do to help? #Alcoholism #Advice #Depression

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    Struggling With Religious Belief After Medical Trauma and Disability

    I was born into a Roman Catholic family. We went to mass on religious holidays, had weddings and funerals officiated by priests, and prayed before meals at family gatherings. Like most of the other kids I knew, I was baptized, attended Catholic school from K-12, and celebrated my First Holy Communion, Confirmation, and Confession. I read the Bible, completed the mandatory Religious Studies in each grade, and memorized the Lord’s Prayer and the Hail Mary. In my child’s mind, God was a mysterious and powerful figure who watched over me (which was simultaneously comforting and frightening), Heaven was an ethereal idea of the wonderful place waiting for me when I die, and Hell was the terrifying end I would experience if I had been a bad person. In my teens, I learned about other religions of the world, and my perspectives on spirituality expanded and evolved. While I did not doubt the existence of a Higher Power and the possibility of life after the death of my physical body, I began to question the contradictions and circular logic within the religion I had grown up in. As a result, I abandoned Catholicism, and became Agnostic for many years. In my late 20s, I discovered Paganism. This earth-based faith, with its triple aspect female deity and her male consort, supported the values and ideals I had developed over the years, and I embraced its practices and celebrated its holidays with enthusiasm throughout the following decade. But a few months after my 38th birthday, my life took an unexpected turn, and my attitude about spirituality did an about-face. After a series of vaccines, I developed a rare neurological autoimmune illness that hospitalized me for 18 months. As a result, my spiritual peace of mind came to an abrupt end, and I have been living (perhaps even struggling) with its absence for the last 12 years. The illness and rehabilitation process was the most terrifying, depressing, traumatizing chapter of my life, and not once did I experience the support of a higher power or any indication of an existence beyond the physical realm. Did I pray? You bet I did! I prayed in earnest. I begged. I raged. I tearfully pleaded for relief from the pain, fear, and loneliness I was enduring. When I didn’t receive a response from the Goddess of my Pagan faith, I reached out to the God of my childhood. Sometimes I prayed for healing, sometimes for guidance, sometimes even for death. I received no reply. Twice, while I was in the six-week coma, I teetered on the brink of death, but I was completely unaware of it. There was no tunnel, no white light, no passed loved ones coming to greet me, and certainly no godly entity welcoming me to an eternally peaceful plane of existence. There was nothing. Just a blank space where time continued to march on without me. I was certain that such a sudden and traumatic event should elicit some sort of spiritual experience or divine intervention. When it didn’t, I felt disillusioned and slightly betrayed. I had spent so many years having faith in a higher power, but when I needed them the most, they were nowhere to be found. I came to the conclusion that it must be because no such entity exists, and there is no realm beyond death; when we die, we simply cease to exist. I have shared my feelings and conclusions with many different people, and it has been met with a variety of reactions, from sorrow for my “loss” to outright judgment of my “attitude.” I have been given advice on how to find God again, and heard all the vague explanations and platitudes: “Everything happens for a reason.” “God only gives you what you’re strong enough to handle.” “Maybe there is a lesson in this that you’re supposed to learn.” “God works in mysterious ways.” “God always has a plan.” But none of these have been helpful to me in coming to terms with my experiences versus my expectations. In fact, many times, they have only created more questions. My husband once said, “You can pray as much as you want, but sometimes the answer is ‘no.’” My response to this was, “But why?” Why would a benevolent, loving, compassionate god not want to help if it’s within their power to do so? Why would they stand aside and allow such intense suffering to continue? And if there is some divine purpose for it, why wouldn’t they at least offer a guiding hand? It made no sense to me. The alternative was much more logical. It was even somewhat comforting to imagine that death was like falling into a dreamless sleep, where all my pain and worry would simply wink out of existence. So I’ve spent the last 12 years denying the need for spiritual practice, and viewing life and death in much more “realistic” scientific terms. Recently, however, I have found myself revisiting the possibility of a higher power and life after death. My husband passed away from liver cancer two months ago. He had a lifelong faith in God and Christ, and was always curious (even sometimes excited) about what his existence would be like after his death. He loved astronomy and absorbed every bit of new information about space and the latest scientific discoveries. He often said that he hoped, when he died, that God would let him fly around and explore the universe. I miss him terribly, and often talk to him, hoping he is listening. The possibility that he no longer exists is deeply disturbing to me. I cannot stand the thought that he might not have gotten his wish for his afterlife. And the idea that I will never see him again fills me with a profound sadness. The dichotomy of believing there is no existence beyond death and hoping my husband still exists somewhere created an eddy of uncertainty that has sparked a whole new conversation with myself. So, once again, I am allowing myself to explore the possibility that there is more to life and death than science can explain. I am only human, after all, with knowledge and perspectives limited to my existence on this plane, in this reality, in this physical vessel. Absence of evidence is not evidence of absence. Who am I to say what other possibilities and realities exist? I have no idea where this new openness will carry me, but I must admit that releasing my anger at god(s) and resistance to spirituality has calmed a simmering tension, and created a budding sense of calm. Most importantly, it has reminded me that spirituality is deeply personal, and is impacted by our experiences and circumstances. No one has all the answers, and no one alive knows what exists beyond this physical realm. There is no “right” answer, no step-by-step guide to attaining enlightenment. Every journey is valid, regardless of what you believe and where you are on that journey. If, like me, you have struggled with spirituality, be gentle with yourself. Allow your thoughts and feelings to evolve in whatever way feels right to you, and don’t let anyone convince you that you’re wrong. You don’t have all the answers, and neither do they.

    Community Voices

    Normalcy

    I like to think that I’m “normal” now. After all, I don’t have aplastic anemia, and I don’t have Hepatitis C that I got from a blood transfusion while trying to get rid of the aplastic anemia. I don’t have any obvious side effects from the West Nile. The holes in my ear drums from getting tubes as an adult that cannot be repaired haven’t affected my hearing that much. My weakened immune system isn’t a huge problem anymore now that people are good about self-quarantining when they get sick.

    But then I’ll have an allergy episode that over the course of 24 hours turns into a sinus infection and bronchitis and knocks me on my ass for a week. Then six months will have passed and it’ll be time for me to go get screened for liver cancer from the cirrhosis that long-term chronic Hep C caused before I was able to get it treated. Then a new variant of COVID hits the news and terrifies the world. Those times are when I’m reminded how abnormal I still am, and it bums me out.

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    Feel humiliated

    I was in good physical and mental health until 2005. My liver failed, my ammonia levels were high I was hallucinating and the outcome didn’t look goodI had to move from the state I lived back to my moms to get on the liver transplant list. I was so devastated. At that same time in 2005 my oldest brother was diagnosed with liver cancer and died within two months. The end of of 2005 my middle brother died of a heroin overdose. I lived and felt so guilty. My parents trudged forward in their 70s I was listed for a liver transplant in early 2006 at UPMC San Francisco. Over the course 3 years…I got better I jumped through every hoop there was, I was compliant. I have never been the same. Fast forward 10 yrs, I had been on Abilify and then lithium in addition. My PCP felt he couldn’t treat me as I need to be treated. I started seeing a Psychiatrist. After 2 years of trying to find a good dosage I had a psychotic break. I was terrified, I had no idea where I was who my husband dad or sons were. I got lost driving, fell regularly and my husband had no ideA what to do…it lasted a month and a half. My poor husband finally called my psychiatrist out of desperation. I have so little memory of that time except delusions hallucinations and confusion. I became incontinent, developed an essential tic in my right hand, lost a lot of memory and it took a piece of my soul by the time it was over. That was 2 years ago. Since that time I’ve had a host of health problems most have gone unfounded, I just feel like I’m crazy. It’s either in my head, it’s my anxiety. I don’t say anything to anybody anymore about how I feel, even if there’s something wrong I don’t disclose. I feel like I’m labeled a hypochondriac, I feel humiliated. My symptoms are not made up but I can’t convince anybody. I’m not crazy I know the difference between right and wrong, sick and healthy. I’m at a point now where after 3 years I feel so much worse than I started out.. I have a very miserable life. I have a PCP, a Psychiatrist , a psychoanalyst, a neurologist and a GI doctor. I feel like a fool and can’t see any hope.

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    I Don't Live With My Spouse for Health Reasons

    In the summer of 2013, after a lengthy recovery from a life-threatening neurological autoimmune illness, I was faced with a decision: return home to my husband, move into my parents’ home on Vancouver Island, or transfer to a Family Care Home (my own suite inside a caregiver’s home). I was newly disabled with limited mobility, and required 24-hour personal care and assistance. I chose not to go to my parents home for a number of reasons, but not wanting to burden them as they aged was the biggest one. I wanted to have a “normal” marriage cohabitating with my partner, but there were a number of reasons why that choice may have been more harmful than helpful, for both of us. I made the decision to move into a suite in my caregiver, Mira’s, home and I have been here ever since. As it turns out, it was the best decision I could have made. Although it was lonely and difficult to continue to live apart from my life partner, it provided both of us with a kind of “breathing room.” When I first moved in, my needs were extensive and my mental health was poor. My ugly behavior and constant need for assistance pushed my caregiver to the limit. Mira is an incredibly kind, patient and professional person, however, and as I began to address my mental health and learned to adapt to my new circumstances, things began to improve for everyone involved. Because my husband was not burdened with the additional role of full-time caregiver, and I was not burdened with the guilt or stress that often comes with relying on one’s spouse for personal care, our relationship remained balanced and respectful, and our marriage began to flourish. Over the last decade, we have adapted to our living arrangements, and learned to appreciate its value. One important value is the impact on our financial circumstances. As most disabled people know, living with one’s partner comes with economic sacrifices. Depending on your spouse’s income, government funded disability payments and supports can be severely clawed back. And if you’re both on disability, you are likely to be living in poverty. Because my husband and I don’t cohabitate, our income is as full as it can be under the circumstances. Currently, the program I’m in for acquired brain injury survivors covers the cost of room and board as well as personal care, along with a monthly comforts allowance cheque. My husband’s income covers his living expenses as well as some of the extra expenses related to my disabilities and equipment. We are still close to the poverty line, but living separately means we receive that extra little bit of financial support that makes all the difference. Another benefit of living apart is the impact on our relationship. Don’t get me wrong: If I had all the supports necessary to do so, I would happily move back in with my husband. But there is something to the old adage “absence makes the heart grow fonder.” While we miss out on the little quiet moments of bonding that couples who live together experience day to day, we also rarely experience the small irritations and resentments that can occur when living with another human being. We never get sick of each other’s company, and because we don’t spend as much time together as we’d like, we don’t have the time or the inclination to focus on resentments. Like any couple, we have our disagreements and arguments, but they are short-lived. Through the various trials we have faced with my illness and rehabilitation, we have learned to communicate honestly and respectfully with each other to resolve our conflicts. As a result, our bond is strong, and most of the time we spend together is peaceful and happy. In recent years, my husband’s life has drastically changed. For the first seven years of my disability, my husband was able-bodied and working full-time. Whenever I worked on a project, he would help with the physical labor (weeding and transplanting in the garden, hanging artwork, moving heavy items, etc). If I needed to buy something that was large or heavy or from a store that was far away, he would hop in the car and pick it up for me. He often helped me navigate through the world with its various issues with accessibility and inclusion. Four years ago, however, he was diagnosed with hepatocellular carcinoma (liver cancer). It is incurable, so he began treatments designed to keep the cancer at bay for as long as possible. The resulting pain and sickness meant he wasn’t able to work, so he went on long term disability, and hasn’t been back to work since. A few months ago, we were informed that the cancer has spread to his lungs, and that he has less than a year of life remaining. His health has been steadily declining since then, and we are now in a position where I am helping him navigate life with illness and disability, rather than the other way around. Not living together has become much more challenging as a result. He is often not well enough to come visit me, so I will drive to his apartment (which has multiple accessibility issues) in my wheelchair, regardless of the weather, so we can spend time together. I will cook for him, tidy up, do his dishes, and help him in whatever way I am able. It raises his spirits when I’m there, and he always feels much better. These days I find myself wishing my husband and I did live together. I want to be there for him whenever he needs me, and to reciprocate the support he’s offered me through the years. It breaks my heart that he’s often alone in his moments of greatest pain, discomfort and sadness. Because he’s always fatigued, he sleeps a lot, so it’s often hours before he’ll respond to my texts and calls. I get worried, and wish I was there to make sure he’s OK. I’ve begun to stay overnight on the weekend, and he helps me with my personal care as best he can. But each time, I return home fatigued and aching, and it reminds me of how much I rely on Mira for my daily needs, and how hard it would be on my husband to provide that care. At this point, finding an accessible home and moving in together again is no longer an option. My husband will likely be going to a hospice in a few months and, although I have gained much independence and autonomy over the years, I am still in need of my current level of care. Fortunately my husband receives regular palliative care and counseling (covered by BC Cancer and Canada’s universal health care), so I feel confident that his health is being monitored. His brother, friend from work, and neighbor have all been kind and helpful, and have assured us that they are happy to assist whenever necessary, so I’m grateful we need not struggle alone. Our bond is tighter and our marriage is stronger than ever. We still remember to appreciate each other’s strengths and thank each other for the things we provide for one another, and we spend many hours chatting, laughing, or just vegging out in front of the TV, enjoying each other’s company. So instead of fretting and lamenting over our living situation, instead of yearning for the things I may be missing while away from my husband, I am trying to appreciate what we have gained, how we have grown, and how our relationship has endured and strengthened regardless of adversity. Do you live apart from your life partner? How has it impacted your lives and relationship?

    Community Voices

    #AllNight My Mind Wanders

    At night, I get such horrible anxiety. I think most of us in this forum do have this same problem. I wondered if it was because during the day, we are so focused on things going on around us, and then once the day is over... the mind is still running.

    Sometimes we come to a point or realization that the world is full of a mix of pleasure and pain. Yet, we mostly only hear about the painful things and not so much about the pleasurable things. We see more news about people dying, than we do about people being born.

    #DeathAnxiety is not something that will go away. Even with therapy, the body still has these issues at night with the mind battle. I have to focus on the bed, the sheets, the blankets. #Mindfulness

    It is very difficult for me to shut myself down, especially being a person who has #BipolarDepression and #Anxiety disorder.

    I have worked hard to get to where I am right now in life, but thinking about my Dad's health right now (new diagnosis of Liver cancer) has not been letting me have a peace of mind.

    As a Christian, I pray. I have to empty my mind from it's thoughts and allow myself just to melt into the bed. However, it is almost like having a full time job to try to go to sleep. I have this whole routine just to try to make myself in the proper place to sleep with ease.

    Drinking tea, a hot bath, lavender spray and lotion, all these things help but it does not always make things perfect. Sometimes over the counter medicines help on the nights where it is really bad. #Unisom Hangovers are horrible. I do not always like taking over the counter medicines, but sometimes it helps.

    I think you just have to write your journal, talk with a friend, watch a boring movie, and focus on something positive.. but then sometimes the waterworks happen. It is all about having a #balance .

    I hope that if you made it this far in this message, that I have made it a little easier for you to sleep. A big hug from me to you.

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    I am doing my best for my #MentalHealth

    <p>I am doing my best for my <a class="tm-topic-link mighty-topic" title="Mental Health" href="/topic/mental-health/" data-id="5b23ce5800553f33fe98c3a3" data-name="Mental Health" aria-label="hashtag Mental Health">#MentalHealth</a> </p>
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