I’ve again invited my mother, Dr. Rita Bonchek, to write a piece for the blog. Her previous posts on the difference between guilt and regret, grieving the death of a parent, what it’s like to read my blogposts about cancer, and how to help children understand death have been well-received. As a psychologist specializing in grief and loss I think her perspective and ability to share insights are welcome additions to the posts I make. I know that she gains comfort from talking with other parents who have children with cancer and sharing their feelings about the way that cancer has affected their roles as parents (and often as grandparents). Her post appears below.
I think the only thing I would say that I might disagree with here is that I don’t think it has to always be a one way street. Mom refers to a time when I was helping her with problems she had in her own life. Yes, perhaps it’s important to be aware of when you are asking your child for help or advice. However, if this is the way your relationship is (ours is, for example), then I believe that maintaining some of this dynamic adds to the sense of “normalcy” that may be elusive but also can be comforting to both parties. That is, if I am not in an immediate medical crisis, helping my mother with a problem she is having feels good to me, rewarding, reminiscent of the way things were before. If the street is always one way, that adds to the feelings of separateness between us, a strong reminder that everything is different.
A suggestion we both have is to focus more on parents taking care of themselves, finding ways to cope in a way that is right for them. Certainly parents and children do not always have the same strategies to deal with medical crises. The parent also may need support to deal with his/her grief during this fragile time. Individuals may find help in talking to a therapist or other supportive figure or attending a support group for parents.
There are constant ebbs and flows in the parent/child relationship based on how treatments are going, anxiety about upcoming tests or bloodwork, and the side effects of treatments. It may not always be clear how much the parent needs to be parent at any given time. Open communication is so important. One of the hardest conversations my mother and I had recently was one in which I openly laid out some ways in which she could be more helpful to me now. That conversation led to a wonderful new phase of support. She feels good that she knows better what I need, how to be helpful to me and to my family. I cannot expect her to be a mind-reader, and the ways that I need support change with how my treatments are going. I will be undergoing treatment for the rest of my life, so it’s important that we are as honest and supportive of each other as possible. I know that she has her own challenges in dealing with my diagnosis. She feels good now knowing some of the things she can do that are most helpful. I truly believe that is what makes a parent feel good is to know they are a help, rather than an additional source of stress for their child during this difficult time.
My mother and I both hope that this piece will be an introduction to this topic. There is so much to say about changing relationships during medical crises. Perhaps today’s post will allow you to raise some of these topics with a family member.
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Dr. Rita Bonchek writes:
Throughout this blogpost, I repeatedly refer to children. Even though adult in years, they are our children. When they are diagnosed with cancer, the relationship between parent and child will, by necessity, change. I would like to suggest how parents can strengthen the relationship and cope more effectively at this time.
When Lisa completed cancer treatment after her initial diagnosis (double mastectomy and chemotherapy in 2007, oophorectomy in 2008), everyone, including her doctors, believed that there was an infinitesimal chance that the cancer would return: that period of time was in the past and life would move forward. When the cancer returned in the form of an incurable metastasis in 2012, we were all devastated.
Families have one type of relationship when all of its members are healthy and a different type when one member is ill. But cancer isn’t necessarily just being ill for a period of time, recovering and continuing on with life. Cancer can be a life and death everyday concern. So, what happens? The conversations change because references to cancer are screened , levity is uncomfortable because how can one laugh about trivial jokes when something so serious is occurring and discussions that involve long-range planning are avoided since how long will long-range be.
Who we were as parent and child before the diagnosis of cancer is not who we are and become after the devastating news. The prior carefree mutual relationship now shifts from both of the parties interacting and sharing problems and concerns to only focusing all attention and sensitivity towards the child. There is now a one-way street. How could this not be? When one asks the question “Whose needs are being met?” it must only be the one who lives with the cancer. The goal is, as much as possible, to reduce stress and tension between mother and child but, most importantly, within the child.
There are some tensions that occur when a parent offers to help a child with household chores, fixing meals, carrying packages, etc. A child’s snappish response of “I can do it myself” may indicate that to accept the offer is to admit a weakened condition. Or, any offer to help may cause reminders that at some time sooner or later that help will be needed. It may be better just to do the chore without asking as in folding laundry, unloading the dishwasher, making a meal that could be frozen if the gesture is not accepted. It is MOST important that we do not take personally such behaviors as negativity or curtness. There can be mis-directed anger at a parent instead of directed, expressed anger at the overwhelming madness-sadness of the cancer diagnosis.
It can be helpful to establish ground rules. The parent can ask “What CAN I do for you that would be helpful?” “What should I NOT do that might be upsetting to you?” Those of you who read this blog-post will surely have suggestions that all of us, who are trying to function each day as best as possible for ourselves and for our children, can benefit from reading.
From the day of the diagnosis, our worlds have changed irrevocably for the worse and we must adjust. I may sound as if I knew exactly what to do and employed suggestions proffered. Not so. Just ask Lisa. I let her down. I had personal problems during the time after her diagnosis of metastatic breast cancer and I vented and asked for her advice as she was trying so hard to just get by.
I felt only Lisa knew the participants well enough to understand my dilemmas and to help me. Time after time, I apologized, I vowed that I would not involve her again and she forgave me. But once was not enough, even twice was not enough, for me to learn my lesson and to seek help elsewhere. If I had remembered to ask myself “Whose needs were being met?,” I hope I wouldn’t have placed Lisa in that position. Our children may no longer be as available to support us.
When I was in practice as a psychologist who specialized in grief and loss counseling, I tried to help my patients to understand, process and deal with major losses. I often explained to them that denial was an effective coping mechanism if it allowed them to absorb the overwhelming loss little by little, bit by bit. But denial cannot be total and the reality of the situation must at some time be acknowledged. So, although I do recognize the possibilities of breakthroughs in medical science, I do not believe in nor count on miracles.
I will let my thoughts go a certain distance into the future when I must, but I function day by day as a way of living . I choose not to focus on what may occur in the future because it may not occur. What a waste of time and energy that would be. I cannot focus on the possible downturns during the treatment, on any pain or suffering Lisa could be experiencing but is not telling me about.
The reality is that though I can support and comfort her, there is nothing I can do to make her physical and emotional suffering go away. If I indulged in this negativity and worry about Lisa in my everyday life, I would have no life. I try to remember- not always successfully- that worrying benefits no one. If my worrying could provide even a tiny extension of Lisa’s life, I would worry myself sick.
A line in Joyce’s “ Ulysses” states this emphasis on the present: “Hold to the now, the here, through which all future plunges to the past.”
To derive satisfaction from life, Lisa and I agreed that auditing classes at Franklin & Marshall College would distract me with an activity that would challenge me and bring me satisfaction. And so it has. The last thing we want our children to do is to worry about us. Whatever we do for ourselves, we do for them. Find some interest or activity that gets you through each day.
Lisa and I have quite different personalities and behaviors. As her readers know, she is very open in describing her thoughts and feelings. In contrast, I was a very private person. When Lisa first started writing, I was uncomfortable seeing private information about our family being disclosed publicly and shared with people I did and did not know. But, very soon, I began to appreciate the role that Lisa’s writing played and continues to play in her life and the lives of her readers. And so I changed and re-evaluated my stance on privacy. In answer to the question “whose needs were being met?” I substituted my privacy desire for Lisa’s openness. I stand with Lisa to help cancer patients and their loved ones live with cancer and not die from cancer.
Our daughter, Lisa, is an incredible daughter, wife, mother and friend. I cannot and will not imagine living my life without her.
Link to Twitter
Thank you
Well said, Dr. Bonchek. You have an Incredible daughter. Yes, Incredible with a capital I.
What a fantastic and wonderfully honest post.
Thank you.
Love to you both.
xxx
Dr. Bonchek adds such wonderful insight into the difficult, unimaginable situation of having a child who is terminally ill. As a mother, as a grief counselor, she lends the weight of authority in discussing these heartbreaking issues. I offer profound gratitude to you both for this enlightening, relavant post.
WOW. This post is SO chock full of insight. I love so much about it, but several things really struck me: “Families have one type of relationship when all of its members are healthy and a different type when one member is ill.” This is very true.
The next thing I loved was this: “The prior carefree mutual relationship now shifts from both of the parties interacting and sharing problems and concerns to only focusing all attention and sensitivity towards the child. There is now a one-way street. How could this not be? When one asks the question ‘Whose needs are being met?’ it must only be the one who lives with the cancer.” Also, so true. But unfortunately many parents (and people) don’t get this.
Lisa, you and your mom are both very wise and have worked hard to get to the core of the stickiness that comes between familial relationships after a cancer diagnosis. It’s a beautiful thing to hear “the last thing we want our children to do is to worry about us. Whatever we do for ourselves, we do for them.” That is a life lesson for us all!
Thank you for this thoughtful — and thought-provoking — post.
Lisa, this is very powerful. I think it’s so important that Dr. Boncheck as your mother understands that your needs take priority now and how hard it is for you to worry about taking care of her while you must take care of yourself.
I am so glad that she appreciates what you are doing by expressing your thoughts and feelings on your blog and got over the privacy issues. What a great idea and help this is to read your mother’s thoughts.
This opened my mind with thoughts of looking at the dynamics of all mothers in relation to when a child has cancer, including my own. I really appreciate your sharing this excellent post.
Being a somewhat shy and private person, I can relate to Lisa’s mother not knowing quite what to make of the “out there” nature of Lisa’s blogging and twittering. But also being diagnosed with metastatic breast cancer, there is something about Lisa’s writing that feeds me. Perhaps it is that sense of urgency to “be” – as honestly and authentically as I can be. I have found that I am drawing from some deep well of Lisa’s esteem and strength. I wake up in the middle of the night and know that in some way she is opening a path for me, and I treasure her like a friend. Even just the tweets about flowers and Lucy help me to in some way connect to a clear flowing life through all of this mess of metastatic Breast Cancer. The honesty and vulnerability of her parents is no small part of the deal …
I’m not surprised this parent said she had “personal problems” and was bothering her daughter with them as daughter dealt with horrible cancer. From the 1st blog note, you can tell this “mother” is a selfish, self-absorbed person — it’s all about *her*! Makes me remember how most/many psychologists are more messed up than the people they’re suppose to help… Poor Lisa to have this mother and especially during this time!
This is an acutely unfair criticism. Christy, do you have a grown daughter with cancer?
Thank you both. I am living with Stage IV breast cancer. I live with my husband and we have a 24 year old son and 19 year old daughter. My mother who is 87 lives next door. I read Lisa’s posts right away and they always help. And many times you put into words what I have been thinking. I printed this post for my mother in the hope that she will be able to talk to me about my having chronic/terminal cancer instead of changing the subject.
Thank you both so much for writing this insightful message. I am a mother who’s oldest daughter now 44 has gone through breast cancer July 2012 and currently is battling bone cancer having spread from that issue. It was a blessing for me just this morning to read this, as it has been an unusually difficult week end…July 4th holiday. Both my daughter and I have had a particular anxious long week end. Anxiety and distress have unfortunately befallen us . Perhaps it is the holiday itself that stirs great emotion when there is grave illness within the family…I think so, Not each and every day are filled with overshadowing…I like to call them breaks in the clouds on such times. The adjustment is amazingly complex and from the message written we all feel the strain of this miserable cancer issue. I want to thank Dr Bonchek and her amazing daughter for posting this . From what I have read on other postings here we all share a common bond……….It is our human connection…I am grateful to have found this profound and touching blog.
Interesting to me that Dr. B used the word “child” repeatedly to describe a 40 year old woman. Not sayin anything at all critical, just sayin.
My daughter had breast cancer. She is 35 and found a lump during her shower. It was diagnosed as cancer. She had a lumpectomy and then had to have chemo because it went into the sentinal node. The problem was that she was four months pregnant at the time and was worried for the fetus receiving the chemo. Apparently I did everything wrong and told a few people to get support and prayers for her and the baby but I over-stepped my bounds according to her. I needed some support myself. My beautiful, talented, daughter had cancer. I never thought I would hear those words. She has been cancer-free and the baby is almost four years old but she has been verbally abusive through this whole ordeal and now she has left my life as in not speaking to me and keeping my grand daughter away from my husband and me. We are very distraught over this and I thought I was doing everything right. She says I didn’t say things in the right way to comfort her and that I expressed how I was feeling. She has turned into a mean, nasty individual and it hurts like no other hurt I’ve experienced. I haven’t seen her or my grand daughter for about 5 months now. The baby loves us and she loves Grandpa Tom. I believe this is so harmful to my grand daughter. She won’t go to counselling with me so I am at a big loss. I am going into a day program for my depression over this – I must have really goofed things up and failed at trying to help her. I am also extremely angry with her and my husband is also very, very hurt. She won’t talk to me at all. I wasn’t brought up this way. I came from a very close family where everyone supported and loved each other. We would never give up on each other. I don’t know what I did wrong or how to fix it. It might not be possible.
I am so thankful that you both wrote and that your perspectives continue to be available. You and your daughter’s openness and honesty continues to offer comfort and possibility.
I hope has time has passed, you and your daughter are in a better place, I feel her anger and pain, she unwilling applied to you, I have also been in the similar situation with my son, and during his cancer, I know I stayed constantly, but I was completely useless, I was weak, constantly breaking down, and he found inner strength, that was admirable, but showed myself a ridiculous specimen, thankfully his treatment worked, during his treatment he shouted and told me to leave, and all though this was two years ago now, I often loose sleep thinking of those horrible times, and how the strong person I normally am, had disappeared, when I needed the strength, it wasn’t there,
I just googled ‘what do you do when an adult child has cancer’, because my youngest daughter, age 30, was just diagnosed, and this blog came up. Thank you – it helped.
I appreciate so much the information shared in this blog. My son of 27 has just recently been diagnosed with stage IV brain cancer and it is a constant struggle for me to cope. I live a great distance away and don’t get to be a part of his everyday life so I feel as though I’m useless in his fight against this terrible disease. In addition, he isn’t one to want to share his feelings so I am at a loss as to what is going on, how he is feeling or what is on his mind.
Thanks again for the thoughts shared as I was able to draw comfort from the information. I would appreciate more information on this subject.
before I type my heartache on here, I want to see if this is correct website
Thank you so much for accepting my e-mail. Our son 42 yrs old had a complete ND laryndectomy on June 18th 2013. Right now I don’t care if I spell anything right, please forgive me. After a pet and cat scan which was clear, he had a problem in his stoma area.We went back to Jefferson in Phila, and learned his biopsy was positive for cancer. Today he had another surgery, and found they tried to remove all cancer, but they gave us a honest, but bleak outlook. My husband and I are devastated, all we have Is hope? Our son is a very independent person, He makes it hard to just love him, Our hearts are breaking. We are really, in plain words really pissed off at what has happened. Please help.
As I read your blog, It makes so much sense, but I cannot imagine life going on without my Jeff. It would be so so hard, and would never get over the loss. He is in Philadelphia right now, with his wife, who is a blessing, but we are so sad. It is 3oclock am and we cannot sleep, the news is just too much. I don’t know how to talk to him. We will never be the family we were, never. Our older son and our daughter love him to death, and don’t know all the details.
Thank you all for sharing – it is tremendously helpful. There are few sites that address how a parent of an adult child with cancer is supposed to deal with our own emotions and interact with our child – who is now an adult. My 28 year old daughter, with a 4 month old child, was just diagnosed with breast cancer and begins chemo this week. I’m devastated, as all of you are in your situations. And I’m not sure how to react and be around her. I know at first I was being too pushy with my advice and she became withdrawn. I apologized and she made it clear that she has to be in charge – not me. I’m trying to ask her “is it ok if I …” rather than “I’m going to…”. As her parent, I want to take action and help her. But helping for her may be for me to just listen and not do anything else. We’re on a journey that none of us want to be on.
I just started ‘searching’ for support and clicked here to read. My 50 year old son has just been accidently diagnosed with stage 4 and a surprise to us all. His brother and I are scared. I just lost my brother to it last year and I have a node on my lung waiting for it’s 2nd CT scan May 5th. Cory will start treatment shortly to “slow it down”. It’s not curable. I realized today I need help to get through this but don’t know where to go. Monday I suppose I’ll call my family doctor for suggestions. Maybe Hoag has help/
I’m in So. Calif., Cory is in MA and his brother Chris is just finishing up a project in HI.
We will go to MA in the next few weeks. Son Chris was the major caregiver to my brother and did a wonderful job.
Well, that’s all. Just writing this has helped a bit. I really have nobody to share with.
This is very tough along with knowledge I can’t do anything to stop it. He’s a special guy and being very brave.
Thank you,
Dane Lussier
Huntington Beach
Rita, I am in the same boat. My 29 year old daughter has Stage IV breast cancer, with mets to her lung, liver, bones and brain. She is currently in remission but we don’t know of course for how long. It has turned all our worlds upside down, and there this this undercurrent of breathless panic we try to keep down. My daughter is an inspiration to us all, but the fear and grief is unspeakable. Thank you for being there, yourself and your daughter. There is great comfort in company along this horrible road.
My 39 year old daughter was recently diagnosed with DCIS, Stage 0, but grade 3, which means it was a rapidly growing organism. I share this so that people will know to ask their doctors about the stage as well as the grade of their cancer. My daughter decided to have a radical mastectomy and is now receiving radiation. I have found myself having a myriad of emotions during this difficult time. Thinking the worst, trying to stay positive, telling her what I thought she should do, not do. I have found that this is a wave that we are all riding and none of us know how to swim. I do not want to make her more stressed by telling her my problems, my fears about cancer. I do a lot of praying, but I haven’t really been talking to anyone about how frightening this really is. I want to be positive while I’m around my daughter, taking her on the hour drive down to radiation. I want to watch the children while she goes out with her husband and I just want to do all I can for her, but I know that is not possible. Thank you for this blog. It’s invaluable.
I just found this blog on a google searc. My 35 year old son has just been diagnosed with advanced colon cancer and our family is devastated. I hope this site helps me cope. I too live very far from him and feel at a loss as to help him.
My 28 yr old daughter as stage 3, triple negative breast cancer. With a 8 month old daughter – their first. She just finished 12 weeks chemo and 8 weeks to go, then double surgery, then 6 weeks radiation. The horror of living this nightmare is always under my surface smile. I am positive with my daughter but I now also tell her occasionally about how angry I am. The longer the process goes on the harder this is. Work keeps me very busy which is my sanity so I don’t think about it then. My husband and I feel like zombies sometimes. So hard for everyone. My prayers are with all of you going through this yourself or loved ones. May we all find our strength.
This has been most helpful. My son will be 48 tomorrow. November 18, 1966 he was born. He was dignoised with stage IV lung cancer February 10, 2010. I thought my life had ended. I am trying to learn and listen to him. He is on my mind every awaking moment. He is single and lives 5 miles away from me. His dad lives 4/hours away and his brother lives 4/hours away. PJ loves his dad so very much and is not able to see as often as he would like because pj’s stepmother has brain cancer. I have to go now but so glad I found this web site. Thank you, so much! My prayers are with each and everyone of you! Janice
Thank you for sharing these feelings. We just learned three days ago that my daughter has an invasive form of breast cancer. The difficult journey has begun, but companions make the journey better.
November 2013 my older dtr Kristen, now almost 33, was diagnosed with base of tongue (lower tonsil) cancer Stage 3-4. 43 lymph nodes removed from her left neck, 1 positive, tumor removed, chemo and radiation. She had trouble with speech and swallowing, now resolved. We were so hopeful, then in July 2014 we found out she had mets to her lungs. More surgery was done. She is now in a trial and literally as they say in a race for the cure. I have to believe in miracles, I can’t bear to think otherwise. What keeps me going is the need to enjoy every moment I have with her as I don’t know how long I will have that privilege. I want to see her every day, but she lives 2 hrs away and of course I work. I will prayer for all of you and your children, give us strength, give us peace. <3
This is a gift beyond measure as I walk this journey of my daughter dealing with cancer.
Thank you very much for your wise words, both Mother and daughter. My thirty two year old daughter was diagnosed w a brain tumor on October 7, 2013. She has been in a fairly long term relationship with a women. Since her diagnosis her partner and partners family have done much. Driving her to treatments and taking care of her. I am forever grateful to them all. I have done what I could but have to work in a pretty unforgiving workplace. I have offered everything and anything to help her partner, to no avail. Little by little things started changing between my dughter and me. She had also sought therapy through a cancer center. We had a very close relationship prior to her diagnosis. We talked about everything. It is all different now. I have had many boundaries given to me. I understand some of them do my best to respect them. It is clear our relationship has changed dramatically. I have asked to meet with her therapist or her to meet with mine, to navigate this “new normal”. I have been denied. I saw issues of control with her partner before her diagnosis, nothing severe but concerning. We even talked about some of the issues. Now I am reminded of my mitakes I made as a single mother. Anything that arrises seems to be my fault, and yes some of them were. Now almost two years post surgery while being on chemo for a year, her partner can do no wrong. I was unwelcomed from there home because it was believed I brought fleas to there home. Yes I have animals and I treat them, but it had to be me. It has gone downhill from there. I saw signs her partner was alienating me. I tryed to discuss it with my daughter. She said just leave it alone and do not bring it up with her partner. I am now told her partner wants nothing to do with me, ever. It’s a long story. Upon learning there will be no resolution possible I am also reminded by my daughter by asking how we could resolve our problems that I also crossed a boundary by even asking. I had no idea her partner had forever shunned me until I asked if it could be fixed. I had asked before while feeling something was off with her partner and me but never got a straight answer.Through many attempts after this conversation, in which my daughter hung up on me, for the very first time, to get back in touch with her I finally got a response. She reminded be that I broke her boundary by asking that question. She also said she will talk to me as soon as I acknowledge that. She also said she loved me. I reread all are messages about boundaries, not asking about her partner was not there. I told her I thought that boudary was not clear. I acknowledged that I get it now and will never talk of her partner again. I am heartsick about my daughters illness but try and remain positive for her. But now I don’t even know what I can talk about to a daughter with whom we shared everything. I made mistakes as a mother and in life, I have no problem admitting that. But I truly believe she in this most vulnerable state, is being controlled by her partner. I just don’t understand why her partner has turned on me. Honestly I don’t. I am saddened that my daughter is in this position. On top of her illness she does not need this! I welcome any words of wisdom as I am severly depressed.
Jo Ann I am so sorry about your daughters illness & your current relationship troubles. My dtr is 33 diagnosed in 11/13 with tongue cancer. She has had 3 surgeries , chemo & radiation. She has mets to her lungs , currently in a treatment study every wk to try to slow , stop this horrible disease I feel your pain. Please seek help for yourself as you said you are very depressed. Reach out to your family & friends for strength. You & your daughter will be in my thoughts & prayers. <3
My daughter is 28 and was diagnosed with Stage 4 breast cancer to the pleural lining of her lung. She was initially diagnosed when she was 23 and had double mastectomy. She is now on Ibrance and Femara and has been since August 2015. Overwhelming sadness and anger is how I feel a lot. She has 3 babies 6, 5 and 2 and I see them all everyday. She is my best friend. She is amazing and I truly don’t know how I will survive without her but I know I will because I will care for her babies and do the best I possibly can for them. For her. I hope for a miracle. May God be with us all.
Thank you for your blog. I’ve read everyone’s responses and identify most with the angry response from a mother telling another mother that she is self-absorbed, which I now certainly realize I have been. I recently took a medical leave from work to deal with the anxiety and depression I’mexperiencing as I fear each of my daughter’s scans will be continuing negative news. My daughter, now 32, has been fighting cancer for 4 years. She was first diagnosed with stage 2 breast cancer, then diagnosed with it moving to her spine (inoperable); and now a third diagnosis of cancer in her lymph nodes near her lungs. She has undergone numerous chemo and radiation treatments, a double mastectomy, egg harvesting, and removal of her ovaries. Her fingernails are falling off, her nose runs incessantly, she experiences endless hot flashes, has lost her stamina to breath fully, and experiences routine pain & nausea – all while I feel helpless as her mother to fix it. Her attitude and strength seems 10 x more than mine, so I am currently undergoing therapy so that I don’t burden her with my anxiety instead of being there as her mother. She will be completing another 2 chemo treatments (of many), then scans and “the results”. These blogs remind me not to burden her with my worry and suffering, but to instead be there for hers and not visa versa.
My 35 yr old daughter was diagnosed a year ago with colorectal cancer that had spread to her lungs and liver. The doctors have said she has probably had it for 5 years. She had no symptoms except constipation. She had surgery, a colonostomy,and was on chemo but was unable to take an important part of the regimen because it caused her to go into anaphylactic shock. The chemo worked on her liver but nothing else. After two trips to M.D. Anderson, she only has one option-to do the strongest chemo. She has made the decision not to continue treatment. She has 2 boys, 13 and 17, and wants to be able to enjoy the time she has left with her husband and kids. This has been very hard on all of us but I am taking your advice to heart because a lot of the things you are going through are very familiar. I pray every day for peace and acceptance. I, too, do not allow myself to consider my life without her in it. That is just too much to bear.
I am very sorry for your terrible loss. Thank you for your honest, intelligent, insightful and helpful post. You are a compassionate mother and human being. Lisa and you were very lucky to have each other.
My single 41 year old daughter was told in December, 2015, that the lump on her breast couldn’t be cancer but get it checked out, no rush. A month later it was TNBC, triple negative breast cncer, stage3B. Several lymph nodes involved. She did well with side effects during the first 12 weeks of chemo which were supposed to be the tough ones. But the second 12 became a nightmare. Doctor had to discontinue four weeks early. The chemo was killing her white blood cells, so besides the weekly chemo, she’d do the next three days of going in for a shot that would boost her white blood cell production. That brought on the bone pain. Now she’s bloated and everything hurts. She’s afraid to keep taking the oxy as she doesn’t want to become addicted.
She’s single and moved in with us the end of March. I read about all you parents that are hours away from your offspring and I really feel for you. The only relaxing I’ve done during all this was when we finally had her under our roof so we can care for her when she needs it. This is so much more difficult for me than I expected. The diagnosis was such a shock after the December doc visit. It took awhile to get my head around it. My husband is very supportive, taking her dog for it’s walks and generally being kind to my daughter. I just met my husband 3 years ago, so it’s no like she’s been in his life forever. What a blessing to have a man that is so kind and caring. There was never a question about her moving in with us; it was a given that as soon as she’d do it, she’d be with us. She was on strong steroids during each chemo session and I think part of her grumpiness now is due to the steriods wearing off. Knowing that doesn’t make it easier on me when I can’t say anything right and she has to disagree with each and every comment. Well, I’ve rambled long enough. Sometimes I’m just so close to tears, I need to do something, anything, but I never know what it is.
My story is similar.
Son, 40 something, advanced grade 4 adenocarcinoma and mets to lymphatic system.
Nothing I say is right and nothing I do is right.
And I mean this to the fullest.
I’m cursed at, yelled at, embarrassed in front of people on purpose.
What do you do? Where do you go?
Find a cancer therapist. They are free to family members of cancer patients. They can guide you in dealing with family members with cancer.
Nice article.
Great read Thank you
My son is 23 he is a twin and my best friend. I have been here before when he was born I was just 20, and had two babies. One in my arms the other two miles away at a NICU with premature lung disease, in a different hospital. He was just diagnosed with Hodgkin’s and once again I am helpless! I can’t put a cognitive thought together. His twin brother is helpless as well now I have two broken babies and I don’t know how to make it any easier for either! I am so lost.
Bridget. I am the mother of 23 year old twin girls. One was diagnosed yesterday and her twin raced home to be with her. They are both asleep in the childhood room, just next door. I cried all day yesterday but still worked to line up Drs. Nightmares when I could sleep. Today I MUST be strong. I know my daughter will be worried about me if I’m not. I am going to pray for her healing and my strength and just do the best I can to be there for her. They are my world. Kathryn
Taking care of an adult child with cancer is very different and difficult, something people can’t understand unless they have walked this road. Everyone tells you take time for yourself, 1 person can’t do it all for the patient, there is no choice and as a parent we must do what’s best for our child all the time. Not easy but I want to be there with him through every difficult time. Most of all I don’t want him to be alone when he…..no words for this…goes to heaven.
Thank you
I direct the Oklahoma Palliative Care Resource Center for the
Oklahoma University Health Sciences Center. I am researching to establish a support group in Oklahoma City for parents of adult children with serious life-limiting illness. Your blog and your mother’s comments are excellent. I would appreciate any suggestions and input for a support group.
Annette Prince
Annette-Prince@ouhsc.edu
I would love to hear from you in this process. I live in PA and have a daughter with brain cancer. I have been looking for such a group! Good luck to you, excellent idea! joduffy55@gmail.com Thank you.
My son and grandson live in Aston, PA. I will keep you updated on our progress.
I live in the UK. My 28 yr old son has been diagnosed with a rare Sarcoma soft tissue cancer. Him and his wife are expecting their 1st child any day, my 1st grandchild. The cancer is inoperable. I am heartbroken, living in a daze, off work with stress and felt totally alone as a mother experiencing this devastating situation, that is until I read your blogs. It has been a great help to me. Unfortunately my son has from nowhere told me that he wants nothing more to do with my husband, his step father, as they never really got on, which is not true. We have had to accept this but it makes me feel so depressed that my husband won’t be allowed to share in the joy of the birth of our grandchild. I have to be strong for my whole family but I am crumbling inside. Cancer has indeed changed family relationships in a negative way I could never have imagined in a million years. However, my love for all my family will not falter and although we are disjointed at the moment it does not deter the love I know we all have for each other. I accept that because my son is very ill perhaps he has to take his anger out on his illness in this way. Thank you all for invaluable insights into coping at such a terrible time. Best wishes to you all and your families, we must all stay strong!
I feel for everyone on this thread. My daughter was diagnosed with Stage 4 met cancer in April 2014 when her baby was just 10 months old. I was diagnosed with cancer two months ago and due for surgery in a week. My stage of cancer has not been determined yet because I will be having lymph node biopsy done during my breast surgery. Here are my thoughts: I try to go with what my daughter wants to talk about. I let her know I am available any time she needs me to babysit. She is a married woman who has a loving and supportive husband and I know she is getting the emotional support she needs. If she wasn’t, she would be coming to me and her father for it. I know my daughter would rather concentrate on living and enjoying being with her husband and daughter, rather than thinking about death, so I let her call the shots. As far as myself, I can handle my own cancer better than I can handle my daughter’s and for that reason I have chosen to see a therapist to gain insight on what I need to do to come to terms with accepting her situation. It is so heart wrenching to say the least.
I have two adult sons I was diagnosed with pancreatic cancer had surgery and then chemo treatments and radiation, my youngest came to me once in hospital for 30 minutes he and his wife after that he never called or came over to see me never asked if I needed anything, my oldest son was there always, it hurt me that my youngest son never came around I wanted to see my grandchildren they live very close to me I went through such s hard time didnt know if I would survive but I did I’m in remission I still have side effects from treatments and not loved by my son
My 43 year old loving full spirited son was diagnosed with stage 3 colon cancer. After surgery 7 months of chemo last December he was told he is cancer free. His check up oncologist told him to have a pet scan. Pet scan showed large single tumor on the liver and two small nodules they do not no if it is cancerous. He is scheduled for surgery in July.e
hard part is that he lives in Australia. I am 68 years old hard to travel. was hurt when he t told me not to come. It is winter there. do not like cold weather. When I said i am booking the ticket he said “no”. I am going to respect his wishes though I am totally broken hearted.
My name is Pam I am a mother of a 29-year-old son and an awesome son his name is Caleb Ramsay he’s 29 he has esophagus cancer just found out I’m devastated we’ve never had cancer in our family who is our fourth child our baby . He takes care of his body no tattoos does not smoke or anything like that very picky what he eats he exercises he’s a dirt bike racer he loves the Lord and he loves to race you can pull them up online anywhere he’s awesome I do not know what to do but just sit and cry .I’m lost I’m overwhelmed I’m numbI can’t move. Found out a couple of days ago it has spread beyond his esophagus they are doing more test a pet scan tomorrow doctors want to start him on chemo radiation right away any words of advice wisdom and help appreciate it . Pamela Ramsay
Dear Pam,
My heart goes out to you, and I do understand the devestation you are feeling because my own daughter has stage 4 cancer and is now receiving experimental treatment at Columbia University Hosp. after previous treatments have failed. I too was numb and cried allot and was in severe depression over it. As parents, we must be strong for our children. As a first step, I called my doctor and asked him to put me on an anti-depressant (which he did). It does help me cope better. You may want to consider this first step as well. There are other steps to take to help you through this devestating time and I would be glad to discuss them with you should you be interested. Please feel free to contact me. My e-mail is Reginacopper@yahoo.com Sometimes just sharing with another person going through similar times can be helpful as well.
Dear Pam my heart goes out to you. My 44 year old son father of three was Dx with stage 111 colon cancer in December of 2015. After surgery and chemo (suffered from severe gout as a result of chemo). December of 2016 he was told he was cancer free. 2017 June they found a large tumor in his liver. He had internal radiation, three rounds of chemo now waiting for the removal of portion of the liver. I am an retired nurse who did 20 years of oncology. I have seen many deaths and sufferings. Since I know too much it hurts me and makes me anxious of the future. Now I rely on prayers. Prayers gives me strength and hope. My son lives in Australia. Soon I will be traveling to Australia to be with him. His wife is a dentist who is very supportive.
I have two good friends that I can talk to who gives me lot of encouragement.
Pray for you and your daughters
Thank you.
Very helpful but not easy to accept.
My adult son has terminal cancer which has changed him.We had a close relationship and he was my friend.
He apologised for his behaviour couple of weeks ago but was visited by the hospice nurse today and has turned against his father
Joan
Thank you, my daughter has been dealing with recurring chordoma( spinal cancer) since 2011. Sometimes I’m so sad I don’t know what to do. I always ask, what is best for her, but sometimes feel like I’ll never be happy again. Watching her suffer is more than I can beat. I always try my best, for her and our family. Deb
Thank you for this post. This morning my 52 year old daughter with 8 children (5 minor children), shared with me she has been diagnosed with cancer. I am numb. My trust is in God. I will try to follow your posts in order to get direction, understanding, wisdom and just help. I do need it in great quanity. Thank you!! May God bless you.
To all who have posted, I thank you for sharing. Our 37 year old son was diagnosed 15 months ago with a soft tissue sarcoma which has now spread to his lungs,pleural space and sac around his heart. We awake and go to sleep saturated in grief. I can’t bear to be around people and have even stopped attending church. I can’t seem to find comfort anywhere No one can comprehend the emotional pain our family is in. All who have posted on this site are the only ones who understand. Reading your comments helps me to know that unfortunately there are many who take this devastating journey I do pray to the creator for strength, courage and peace for all of us
Thank you, for all the posts, I was looking for answers I feel like everything is closing in on me again and I really am trying not to lose control.
I lost my only daughter who was my oldest child with uterine cancer, wow this came on suddenly with a vengeance, I noticed on Labor Day at my son’s house she did not look well, and I went to her husband and ask if she had been sick, and he said yes and I thought I was going to faint right there in the yard.
I had rode with them back to their house and got out, went in and talked to my daughter and found out how sick she had been and I wanted to take her to the hospital right then, she said Mom can we go in the morning and I said yes.
I got home it was 5min until her husband called and he was taking her to the Hospital, when I got there she was in cardiac arrest!I could barely talk or move she had barely had enough blood in her for her organs to function.
This was on Labor Day in September, it was beyond a nightmare for me, The cancer was all over her, I went to the Chapel and I beg for God to let me have her one more Birthday and Christmas, BD was on 12/23 and God answer my prayers, As sick as this child was & dying she was with all her family for those days. She went back to the hospital, then I took her to MD Anderson then we brought her home to hospice she died on Jan 24, 2006. She was 42 and my heart today is partially gone.
Now I have 2 sons, and in 2013 he was moving a chair with his brother and the chair fell on my youngest son, 2 days later his girlfriend called and said that he was in emergency surgery, I was scared to death my oldest son came and pick me up and we went to the hospital. When the Dr. Came out didn’t say a lot, are maybe I was IN SHOCK I don’t know, said they took so much of his colon, the Dr. Didn’t say anything about cancer. So I was waiting to go with my son for the follow up surgery appoint. He said Mom you don’t need to go it’s just a follow up, he was 40, so I didn’t argue with him, I told him to let me know what the Dr said. I waited and waited and finally he called and said Mom I have Colon cancer, he was always my little teaser and I could not believe my youngest son had cancer, we went to the cancer Dr. And he told him he had Stage 4 colon cancer and it had spread.. they gave him 6mts to 1 year to live. NOW my Heart cannot take much more I don’t think, he has stayed with his brother for a while because he knows how hard it his when I see him, but God gives me strength to not cry when I see him, when I hug him I feel all the disgusting tumors in his stomach. I really don t think I can stand to lose him my heart is breaking once again! What can I Do, someone please tell me so the pain will go Awy.
I love him so much, I’m always here for him, it’s like the lady said above he doesn’t want to be around me as much as before, and this is killing me. I’m sorry for my long post I was crying so much it’s hard to type!
God Bless each and everyone for your blogs ! My Heart ❤️ is with each of you
Linda W.
I am a 64 yr old mother of three. My daughter is 45 she’s my only daughter and the oldest of my boys. She got married young and has 3 grown children beautiful awesome kids. Again she has two boys and one girl. Her oldest son is 25 her daughter is 22 and her youngest is 20. My daughter was diagnosed with pancreatic cancer metastasized to her stomach. She lives 35 miles from me and I myself had breast cancer in 2012. I went through severe problems because I was allergic to the implants. After several years and surgeries constantly living in the hospital I said no more. Please just take them out. We are. Lose but not like I would have wanted to. I never asked anyone for help except my husband. Now she has gone through her 4 th round of chemo just this week. The Oncologist gave her 6 mths to live without hemp or 2 yrs with chemo. She has always been. Very very strong. Her and her husband even adopted a new born baby from his family side because the mom was an addict. This baby is 5 now. And the problem I’m having is that my daughter doesn’t want me to ask her any questions about her chemo and she will not ev n take my advise. My children are my life. She is so angry when I call to talk to her I have to be very careful about what I say to her. And I’m mostly telling her I’m sorry. She yells at me and tells me that she is a grown woman and I treat her like a child. I don’t think I do i just never know what to say. She has literally pushed me away. Ever time I call to tell her we’re coming over she always has an excuse for me not to come. My husband and I are afraid to just show up because we just never know how she’s going to be towards me. I wish we could get along and talk. She has a strong bond with her daughter and because she lives Nextdoor my granddaughter will go pickup the 5 yr old and brings her home with her. I just want to hold my daughter and just be there for her. Because I know no one knows when our time will come so I literally dwell on being threatened to loose her and never see her again. She has always been a woman that will help anyone so I had some health issues when we found out about her and I did call her everyday and tell her how I was feeling. My train of thought was if I tell her how sick I am maybe I could get her to come and help me and maybe forget about her problems. When she has chemo she just goes and goes until she runs out of fuel she eats healthy even works out. I can’t tell her that I’m proud of her and that if she ever needs anything I’m here for her. Even that upsets her so she just normally yells at me and hangs up on me. We had a good relationship but now it’s just impossible for me to get through. Then starts telling me it’s not all about me. I can’t ever vent and tell her how I feel and what we need to do to get through this. But it doesn’t work. I’m desperately trying to find a life instead of sitting here dwelling on it. But I’m disabled I can’t work I can barely move atriums but I would do it for her. I did acouple of times I did her laundry and cleaned her house but now it’s like she just wants me to literally stay away. I’m desperate for some advise I’m seeing a therapist but it still hurts my heart. I think some stuff f is about me she doesn’t want to know how I feel about it. So ???
So sorry yo hear you are having a hard time.
When my 50 year old son was diagnosed with terminal cancer,he treated us cruelly.
I can now,17 months after his death,realise it was his illness that caused this although it still hurts.
He was my best friend until his illness.
Hope this helps
Me too. My daughter could be so short tempered with me after she got cancer that the hospice nurse once told her to be kinder to me because it hurt HER when she treated me so badly.
It was not her fault. It was the disease. I know she loved me. It still hurts, and I still wonder what I did wrong, how I could have been a better mother, but it would NOT have made any difference. I can’t imagine what she was feeling. No wonder she changed. She used to tell me it was NOT about me–everything had to be about her and we could deal with the fallout when she was gone. I understood that. I was not allowed to cry in her presence or do anything selfish. I’m sure you are doing the very best you can. Be comforted in that. Cancer is a beast and poisons families. And I’m sure the medications have an effect on the brain as well. It is NOT your fault and it is NOT your daughter’s fault. Sending love and wishes for strength.
I also think that on top of the physical pain they feel and the emotional grief at knowing they will die soon and leave their loved ones, it is hard for them to imagine the grief they will be causing their parents–it’s just one more horrible agony and they try to push that thought away, not deal with it, by pushing the mother away. That’s my theory about what happened with me. Their own horrible guilt at doing this to their parents, even when it’s not their fault, is crippling.
Yes,I agree with you.
My son David’s cancer metastasised from his festival via his lungs to his brain.
Sorry if you have lost a child
Love Joan xxx
Ps testical–phones fault!
It has been very helpful to read all these comments . My son Shaun was diagnosed on 8/8 2019 with stage 4 gastro esophageal cancer . He is presently receiving chemo . He is very positive . He is married . No children . We have have always had a very good close relationship , but in the last 2 weeks it feels like he is pushing me out of his life and I always feel like I am walking on egg shells . Just feel like I can’t do or say anything. I lost my daughter , Shaun’s sister to Leukemia 10 years ago and I was able to take care of her and be with to the end . It was only 3 months from when she was diagnosed to when she went to heaven. I am a nurse and it is so hard not to want to take care of Shaun . I try very hard to no overstep the boundaries , but I still do expect him to respect me too . Any help from someone in a similar situation would be very much appreciated as to how to stay sane and not fall apart right now
Oct 1 our world changed when my 34yr old step son was diagnosed with a rare cancer called Ewings Sarcoma in his brain and spine. At first they said they were treating to cure. No prognosis as far as time was given and quite frankly, we didnt ask. After researching this diagnosis for 3 months and reaching out to others I now.know its likely he will succumb to this disease that we simply call cancer. I have reached out to counseling and have just started accepting that he may pass away. It is heart wrenching. Any time I am alone I cry whether I am at work or at home or in my car. It hurts. It really hurts. It isnt fair. Please dont say life isnt fair. I know.it isnt. But when it comes to your kid, it ISN’T FAIR! I have a few friends who have lost their children and it broke my heart. It hurt me to see their pain as a mom. Now that this is happening, it’s almost unbearable. I wonder how happy one can be after losing someone so special to you? Can I be happy again?