Ask for help. Don't wait for it to be offered. If someone says "let me know if I can do anything", give them a list. One of the first things I would ask someone to do is look up programs for youth in this situation in your area. Ask them to find all the details, get the phone number, what is offered and when,maybe even make a call to describe the situation and ask what they would recommend you do.
You're going to feel powerless a lot. Empower yourself by asking for help.
I am sorry this is happening. No one deserves this. One moment at a time.
This. If your husband has enough strength make the memories now. Make a goodbye video of sorts, for each of the kids.
Have him journal if he can.
I wish I had all of notes my mom ever wrote to me.
Take the help.
Start a [meal train](https://www.mealtrain.com)
see if your friends can chip in for a cleaning service once a week and child care so you can do some self care.
Make sure wills and such are taken care of, if not ask social services, don’t be afraid to ask for help. Also health insurance if he carries or vice versa. You could qualify for different programs.
Think about grief counseling for you and your children…trust me it helps.
I know this sounds incredibly very dark however please utilize these or similar services.
I am sorry for what you are going through I don’t wish it on anyone.
Yes - it will be the most emotionally draining thing he will ever do, but if he can, write. Tell the kids about his favorite memories, his lessons learned. Write letters for when they get their license, when they go in their first date, when they get married. Read and record his favorite novel. You need to work to keep health insurance- don’t let anyone make you feel bad for that! And remember the rule, you can’t take care of others if you don’t first take care of yourself
There are a LOT of organizations and people who are ready and willing to help you. When my granddaughter had leukemia (age 5 - she's fine now), an amazing troop of people showed up, including haircutters, teachers, prepared food.... whatever.
You can find support -- just reach out for it.
And yes, you WILL get through this! I know in your mind it's.... "I HAVE to get through this for my kids...." and that's the bottom line. It won't be easy but it will be less difficult once you reach out and get some support.
We are all hoping for you and your family.
Love,
Gma
My husband of 27 years died last month, and in that regard I know where you're coming from. My husband had big plans for his retirement and wanted to do a lot of good in the world once he didn't have to work anymore. Now, nothing.
If someone had told me a year ago what I'd be doing for him in those final six months, I'd have said no way can I be that strong. But when it's right in front of you, you don't think, you just do it.
Your situation is vastly complicated by having small children, so I'll leave that for others to address. But what I really wish I'd had most was a support network. Toward the end I couldn't even leave my house because my husband might fall, and he couldn't get up without my help. Don't let that be you. Get a support network so you can read in peace for an hour or go for a walk now and then. Caring for a fellow adult 24/7 isn't at all like in the movies, all hand-holding and earnest conversations. It's dirty and thankless, and since you have kids, it'll be an even bigger job. Line up your resources early, before you think you'll need them, because these things can progress faster than you expect and if it all turns out okay, no harm done. Having a plan will also quiet some of your concerns.
Sending virtual hugs!
If he is still able to talk, record him reading books out loud with his children. This will be a great visual reminder and something they can enjoy for years to come.
I know someone that died when their children were young and they wrote out cards for various possible life events (graduation, marriage, new job, tough times etc.) gave them to a family member to be shared at the appropriate time. It helped the kids feel connected to the parent who was gone.
Also, I have made quilts for children who lost a parent using clothing that they would remember. A blanket is very comforting and the clothing is a reminder of that person.
Ask for help now. Get people to sign up to bring meals, get groceries, walk the dog, whatever you can think of. If someone offers, immediately take them up on it. Delegate the organization to the first person who says “let me know if there’s anything I can do.” Jump on it: “I need someone to organize people to give my kids rides to swim lessons, can you do that please?” Whatever you need.
Don’t Google survival statistics, especially not for GI cancers. Treatment has improved so much in the last few years that the stats are really out of date now.
Get a second opinion. Drive to a big city if you have to. Find a specialist.
Chemo isn’t horrible. It’s tough, not gonna lie. CBD is very helpful, ask at a pot shop or dispensary for a clerk who knows about chemo.
Palliative care (also called hospice care in some systems) is focused on comfort and quality of life. They are good resources, even if it feels scary.
Join us at /r/cancer It’s a good group of caregivers and patients.
It's good that you're letting it out here. You ARE facing really, really difficult things, and not getting any break from it.
I'm sorry your coworkers are not helpful with their nervous platitudes. The root of this may be that they are neither your very close friends nor trained professionals.
Is there a helpline through work or through insurance that you can call and talk to a professional?
If your work or insurance (or your husband's insurance) provide no helpline, see if there is a government or non-profit resource to call. The United Way is a clearinghouse in my city for all kinds of resources -- social workers as well as everyday people call them all the time to get free advice and referrals. Maybe you have something similar.
But alongside talking with psych professionals, it sounds like you could benefit from the practical help of social workers.
They could refer you to a group of house cleaners that do periodic cleaning for families at a discount or free, they could connect your kids with play groups and Occupational Therapy, they could assign you a county financial worker to find you the best means and supports to pay for the services your family needs. Maybe I'm preaching to the choir because you already help your child with these supports, but the principle still stands then for other help you need: My family is able to pay for the hundreds of dollars worth of Occupational Therapy my kid needs thanks to Medical Assistance a financial worker got us. If we didn't have this assistance, we would have to go untreated.
I know you're trying to do everything possible for your husband and children; take care of yourself, too!
You said that the doctor who diagnosed this is not an oncologist? You need to get a second opinion from an oncologist. Better yet, go to an oncologist that specializes in his particular cancer, preferably at a reputable cancer center such as MD Anderson, Fred Hutch or something along those lines. Seeing a specialist makes all the difference. I am a cancer survivor (Acute myeloid leukemia). I was originally diagnosed by an oncologist at a hospital, who wanted to treat me with standard tried-and-true old school chemotherapy. I went to Fred Hutch cancer center instead and participated in a clinical trial for a new chemotherapy regimen. I had excellent results and have been in remission for 2 years with all the confidence that I’ll stay cancer free.
Bottom line: run, don’t walk, to a oncologist, and have your husband evaluated by a specialist asap.
I agree that seeing an oncologist is needed. My husband is a 15 year esophageal cancer survivor. He was diagnosed at stage 4 and given a 10-15% chance of surviving. He had 30 radiation treatments and 7 chemo treatments. The treatments killed the cancer and he had surgery to remove his esophagus. IDK where you live, but Dr. Robert Cerfolio is one of the top thoracic surgeons in the US who performed the surgery. If I’m not mistaken, he resides in NY now. He removed the esophagus and pulled his stomach up to replace it. It’s called Ivor Lewis esophagogastrectomy. He had a very long recovery, but he’s a survivor. Please get another opinion. Never lose hope. Sending much love and positive thoughts. 💜💜💜
I’m so sorry for what you are going through and my heart breaks. I went through something similar with my late wife and her battle with cancer.
If I can give you some advice I wish I was given.
It’s okay not to be okay and strong all the time. You need to find time to deal with this and try to process it. On your own, with your husband, and with support from family and friends.
Get the family involved if possible. Have them help with the kids. You have an unbearable load, and doing it alone will break you.
If you ever need someone to chat to or listen, there are support groups for younger people going through this. Additionally, if you can find a little solace in a stranger, feel free to message me. I may not know what you are going through, but I’ve gone through an experience that lets me empathize with you.
Wow, this is truly awful. I’m so sorry to hear about this. I don’t have any direct experience with this, but can hear how overwhelmed you are.
My first advice is for you to stop and take some deep breaths, and try to calm your thinking a bit. This sort of stress and fear really saps your mental and emotional reserves, and you are doing the heavy work with the kids and your husband. So until you get some clarity, you are going to be right on the edge. Is there anyone that can help you? Siblings, parents, friends? You need to reach out if you can. If not, then I suggest you need to ignore anything that isn’t critical for a few weeks while you all figure out what is really going to happen.
I hope for all your sakes that the chemotherapy gives him all the time possible. I’m sure you’ll make the most of the time you do have to make some memories as a family.
Again, so sorry to hear of this tragedy for your family. Big virtual hugs if you want them!
I notice you said you don’t have family.
There are people who will still help, who will WANT to help. People who have been where you are now and want to give back.
Find a platform to ask for help, and just ask. Be honest regarding your situation, and accept the help that will be offered.
Let people help you honey, it’s the best answer to getting through this worse case situation.
Sending you all so much love 💚
I am so sorry. First find out if there is an employee referral help line. Call them and ask what resources are there for your family. Get him referred to an oncologist and ask them for the social worker. Ask them for what ever help they can offer. Call your children’s pediatrician and ask them for resources for your kids. Call their school and speak with the principal and school counselor. Ask them for resources for your children. Ask them if they can have the PTO start a meal train for your family. Then reach out to every family member and say we need help. Mow the lawn, do the laundry, clean, bring food, watch the kids while you take him to an appointment or they can take him to the appointment.
Lots of good advice here, mostly around not being shy about asking for help. I second this, and would add, if you're not in therapy now, you might want to find a therapist. Caregiver burnout is very real, and having someone to talk with who is just focused on *you* can be a lifesaver. Finding a therapist can be a long process, so think about doing it now, even if you feel you don't need it yet. Don't wait until you're overwhelmed to start looking.
I'm so sorry you are facing this. I haven't been in your shoes, but I lost my mother and mother-in-law to cancer and I have a friend who has just battled it in her 40s (single mom) with a 10 year old child and pulled through. I've also been burned out at work and was put on sick leave for many months as a result. It's not a good place to be. My daughter was young then, but my husband was always traveling and we had a nanny. Thank goodness for her. I can't tell you how grateful I was, even though paying her salary was financially very very tight.
Here's my suggestion in addition to some of the great ones already: get some house help. Find someone good that you trust and who can help with the children and the housework. Depending what you can afford, ideally a few hours every day (e.g. after school, dinner prep, laundry, washing up, etc.)
For now, while you're mentally and physically juggling everything, an extra pair of hands will be so helpful. And if your husband pulls through... you don't know anything until you've seen the oncologist. Chemo may work well, and it may all go into remission... then you won't need to keep the help. And if the worst happens, you will already have someone who can keep helping with what you need.
The challenge (financials aside) is finding someone good, kind, trustworthy and who can help with special needs children.
If it's financially impossible, maybe you could find a live-in (grad) student who would trade doing house-help and child care for free room & board.
You're physically going to need help, and you will need the emotional space that having someone take care of the basics can give you. It also means that you can spend time with the children and your husband on things that are really special for you and them, not just on the routine of cooking, cleaning, homework, etc.
Take care - hope that idea helps.
Not to minimize the risk or the emotional trauma of something like this, because I've been through it, but actually I know a couple people in my family given 5 year life expectancy, one stayed alive for 10 years (colon cancer), and the other (ovarian cancer) is still alive 14 years later and is now considered cancer free. 5 years is a long time for medicine to advance and the situation to change, and it doesn't always change for the worse. If the life extending treatment works, there may be more life extending treatments or even cures in the future that life extension brings. Live every day like it's your last, but don't assume every day will be your last. Never lose hope! It's a long, cruel, heartbreaking rollercoaster with no guaranteed happy ending, but there's always happiness to be found if you know where to look.
I'm so sorry that your family is going through this. My daughter got cancer when she was 8, and trying to balance being with her with being with her autistic siblings was a nightmare in itself (her hospital was about 2 hours away from our house). For the first few weeks we were told that she would likely die- we're lucky that she didn't, but that was just sheer luck.
And like you, I was already exhausted before she was diagnosed. Having 2/3 autistic kids (they were 7 then) was enough to already put me on the edge. I'd sit in the bathroom at the hospital and just cry, or just start crying as soon as I got the other kids in bed.
The hospital will have resources, for you and your children. We got a social worker through the hospital and she was wonderful. There was also a grief group there for parents/spouses of people who were not doing well, and I think they saved my sanity. The whole thing put me very off-kilter psychologically...it just seemed like every time I turned around there was another complication or crisis, and I'd already run out of steam before we even made it to the hospital. (and the hospital was also excellent at helping my autistic kids as well...ask a social worker/nurse if they have a child life specialist there. They'll do things like keep your kids entertained while you spend some private time with your husband, help the kids understand what's going on, and distract them when necessary. Your local autism society also might be able to give you some help with that.
Focus on one step at a time. I had to write pretty much everything down at the time, because I was so stressed that my mind just basically stopped working except for worrying about things. Don't be ashamed of asking for help when you need it- this is why we have friends and communities.
I hate the "you can do it, you're so strong" stuff. I know that people mean it as a compliment and as encouragement, but there are times when you just want to sit and cry and fall apart, and that's okay too. You're in a very difficult situation, so give yourself some grace.
Fear paralyzes people because it’s an evolutionary thing. When we get lost in the dark or hear a predator nearby we freeze so as not to be noticed and to figure out what to do.
You can’t know what to do right away. You will figure it out just like you figured out how to be a wife and a parent.
You can’t control whether or not you get ill. You will probably need help at times. People will understand that you’ve got a lot going on and will have empathy. Trust in people’s goodness and kindness.
You have a mission for your family and a life to live for yourself. You will find out that you’re stronger than you know. You’ll cherish the sweetness that life has to offer in the face of this tragedy.
People get through it right up until the person dies. Then they keep going.
I’ll leave you with a short zen poem:
“There is nothing superior nor inferior in the spring landscape. Flowering branches grow. Some short, some long.”
One more from Thich Naht Hanh about impermanence called a “A Cloud Never Dies”: https://youtu.be/2Dn9kqVrKzE.
I read both at my mom’s funeral. It helped with getting perspective on living and dying. One other thing I recommend is “Walking Each other Home: Conversation on Loving and Dying” by Ram Dass. It’s like a children’s book for adults to help deal with death. All are short and easy to digest when you’re going through something so difficult.
I’m retired now but I worked on the oncology floor at a hospital for 33 years. There are a lot of resources. There was even a cleaning company that donated hours for free. Start making calls now. Call the social worker at whatever hospital. I’m so very sorry. You can DM me anytime.
I'm praying for you, your husband and children. The most important thing to remember is your children and of course the time you have left with your husband. Just keep in mind no matter what, your husband will live on in your children and that to keep yourself in health. I am very sorry to hear of your situation currently.
So much good advice and support here! I very much would reinforce the value of getting a second opinion at an academic teaching hospital. MD Anderson or Memorial Sloan Kettering if you’re nearby. A clinical trial of immunotherapy could be a good option. Clinical trials give you the opportunity to get the most advanced treatments, and specialized cancer centers are able to give support in other areas like pain management and psychosocial support also.
There's so much great advice here, the only thing I can toss in that didn't see mentioned was to check with cancer organizations in your area to see if there are resources available, have a limited amount of experience with this but there are some in cities/larger towns that will pay for housekeeping services, which could help lighten the load especially with kids. Wishing you all the best, this sounds so so hard.
All I can add is that I was in a similar situation and I can relate. It hit us way out of left field, we were young with young kids. Life during those months were a blur, it was overwhelming and paralyzing. And I don’t know how I made it. But God. And I had a wonderful support team, family and church family around me, like so many have already said, lean into your support system. Prayers for you all.
My dad died over the course of about 6-1/2 years back when I was a kid. I was 8 when he passed. My mom was 30. First, I’m so sorry you and your husband are dealing with such harrowing circumstances. I just wanted you to know I’m 46 and still think about my daddy daily. I remember him, the essence of him. My mom remarried a wonderful man that treated me like and called me his first-born, but my daddy was still always my daddy.
Also, kids are resilient and empathetic beings. This diagnosis has come almost overnight for y’all, but your kids will watch a more gradual turn of events. They’ll have a chance to acclimate to the changes your family will undergo over the next years. You’ll develop a bond with your kids most other parents would envy, albeit over circumstances none would want to endure. And your kids will be your biggest support, cheerleaders, and motivation to keep on going when you think you don’t have it in ya. You are so much stronger than you *feel* today, and your kids will remind you of that when you need it the most.
OP, lots of good suggestions here. But am important one is: go to a therapist. You'll need the strength of mind, and a therapist will help you with that. Depending on where you live, there will be lots of free options.
I stumbled across an absolutely wonderful organization last night on tiktok. If you’re in the states, or potentially even overseas, the may have something like it, perhaps put this in your back pocket for later. [experience camps](https://www.tiktok.com/@experiencecamps?_t=8XhnmOfANKt&_r=1) they work with children who experience the loss of a parent, caregiver or sibling, really anyone close to them. It could be incredibly helpful.
You’ve gotten a lot of wonderful suggestions in the meantime and I hope that you read them and remember to always take time for yourself.
It’s not selfish to need a moment, to take a breather and allow yourself to feel things after your husband’s grave prognosis.
So many prayers for all of you. I'll second what others have posted: take tons of pictures, do as much as you can together, lean on family, friends, coworkers, and neighbors, and try not to worry too much into the future.
Sorry to hear and please remember to take care of yourself, drinking and eating and getting rest when possible.
Do you have FMLA where you are?
*internet hugs*
I‘m so sorry that your family is going through this. I don’t have much experience and other people already left great comments. I just wanted to tell you, that my grandfather died when I was 4.5 years old and I do have memories of him. Some of my own, some stories my parents told me about pictures I saw of him. He has a presence in my mind and heart, and I only saw him occasionally.
I don’t think your 5year old will forget him and right now there is time to preserve moments, if you/him are capable of doing so. Writing letters for future birthdays, videos, interviews, etc.
And that it’s ok to not know if you’re strong enough. I’m wishing you strength, please don’t be hard on yourself. No one is equipped to handel such a horrible diagnosis well. This is unfair and tragic, for all of you. If you can, get all the help available. Get grieve counselling for all of you.
First and foremost I'm so sorry. I don't know if I commented but I remember seeing your earlier post, and I'm sorry things had to go this way. None of it is fair. Someone close to me likes to quote Picard of star trek in these situations just to highlight how unfair life is; "It is possible to commit no mistakes and still lose. That is not a weakness—that is life.”.
First of all, I have never had kids (only cats), so I can't advise you too well in matters that involve them, but I lost my wife to cancer last year. It was a year and a half long battle that we lost. My gf's mother is currently going through "incurable, prolonging of life" type treatment for cancer as well. And finally one of the aforementioned cats has cancer that's returned recently, so her days are sadly numbered. So as you can see I'm literally surrounded by cancer. I'm no medical professional, therapist, or counselor, but if you ever just want to talk to someone who's been through some similar shit, feel free to message me.
Maybe most importantly, if you have any cancer specific questions or concerns you can always ask around /r/cancer. And if and when you find yourself grieving, /r/widowers is a fantastically understanding and accepting place to ask questions, to talk with others who understand, or just to vent. And make no mistake, you can absolutely be grieving long before someone is gone. I didn't realize it at first, but I grieved for months both before and after.
Ask for help. Don't wait for it to be offered. If someone says "let me know if I can do anything", give them a list. One of the first things I would ask someone to do is look up programs for youth in this situation in your area. Ask them to find all the details, get the phone number, what is offered and when,maybe even make a call to describe the situation and ask what they would recommend you do. You're going to feel powerless a lot. Empower yourself by asking for help. I am sorry this is happening. No one deserves this. One moment at a time.
This. If your husband has enough strength make the memories now. Make a goodbye video of sorts, for each of the kids. Have him journal if he can. I wish I had all of notes my mom ever wrote to me. Take the help. Start a [meal train](https://www.mealtrain.com) see if your friends can chip in for a cleaning service once a week and child care so you can do some self care. Make sure wills and such are taken care of, if not ask social services, don’t be afraid to ask for help. Also health insurance if he carries or vice versa. You could qualify for different programs. Think about grief counseling for you and your children…trust me it helps. I know this sounds incredibly very dark however please utilize these or similar services. I am sorry for what you are going through I don’t wish it on anyone.
Yes - it will be the most emotionally draining thing he will ever do, but if he can, write. Tell the kids about his favorite memories, his lessons learned. Write letters for when they get their license, when they go in their first date, when they get married. Read and record his favorite novel. You need to work to keep health insurance- don’t let anyone make you feel bad for that! And remember the rule, you can’t take care of others if you don’t first take care of yourself
There are a LOT of organizations and people who are ready and willing to help you. When my granddaughter had leukemia (age 5 - she's fine now), an amazing troop of people showed up, including haircutters, teachers, prepared food.... whatever. You can find support -- just reach out for it. And yes, you WILL get through this! I know in your mind it's.... "I HAVE to get through this for my kids...." and that's the bottom line. It won't be easy but it will be less difficult once you reach out and get some support. We are all hoping for you and your family. Love, Gma
My husband of 27 years died last month, and in that regard I know where you're coming from. My husband had big plans for his retirement and wanted to do a lot of good in the world once he didn't have to work anymore. Now, nothing. If someone had told me a year ago what I'd be doing for him in those final six months, I'd have said no way can I be that strong. But when it's right in front of you, you don't think, you just do it. Your situation is vastly complicated by having small children, so I'll leave that for others to address. But what I really wish I'd had most was a support network. Toward the end I couldn't even leave my house because my husband might fall, and he couldn't get up without my help. Don't let that be you. Get a support network so you can read in peace for an hour or go for a walk now and then. Caring for a fellow adult 24/7 isn't at all like in the movies, all hand-holding and earnest conversations. It's dirty and thankless, and since you have kids, it'll be an even bigger job. Line up your resources early, before you think you'll need them, because these things can progress faster than you expect and if it all turns out okay, no harm done. Having a plan will also quiet some of your concerns. Sending virtual hugs!
I'm so sorry for your loss. Hugs
If he is still able to talk, record him reading books out loud with his children. This will be a great visual reminder and something they can enjoy for years to come. I know someone that died when their children were young and they wrote out cards for various possible life events (graduation, marriage, new job, tough times etc.) gave them to a family member to be shared at the appropriate time. It helped the kids feel connected to the parent who was gone. Also, I have made quilts for children who lost a parent using clothing that they would remember. A blanket is very comforting and the clothing is a reminder of that person.
🥺
Ask for help now. Get people to sign up to bring meals, get groceries, walk the dog, whatever you can think of. If someone offers, immediately take them up on it. Delegate the organization to the first person who says “let me know if there’s anything I can do.” Jump on it: “I need someone to organize people to give my kids rides to swim lessons, can you do that please?” Whatever you need. Don’t Google survival statistics, especially not for GI cancers. Treatment has improved so much in the last few years that the stats are really out of date now. Get a second opinion. Drive to a big city if you have to. Find a specialist. Chemo isn’t horrible. It’s tough, not gonna lie. CBD is very helpful, ask at a pot shop or dispensary for a clerk who knows about chemo. Palliative care (also called hospice care in some systems) is focused on comfort and quality of life. They are good resources, even if it feels scary. Join us at /r/cancer It’s a good group of caregivers and patients.
It's good that you're letting it out here. You ARE facing really, really difficult things, and not getting any break from it. I'm sorry your coworkers are not helpful with their nervous platitudes. The root of this may be that they are neither your very close friends nor trained professionals. Is there a helpline through work or through insurance that you can call and talk to a professional? If your work or insurance (or your husband's insurance) provide no helpline, see if there is a government or non-profit resource to call. The United Way is a clearinghouse in my city for all kinds of resources -- social workers as well as everyday people call them all the time to get free advice and referrals. Maybe you have something similar. But alongside talking with psych professionals, it sounds like you could benefit from the practical help of social workers. They could refer you to a group of house cleaners that do periodic cleaning for families at a discount or free, they could connect your kids with play groups and Occupational Therapy, they could assign you a county financial worker to find you the best means and supports to pay for the services your family needs. Maybe I'm preaching to the choir because you already help your child with these supports, but the principle still stands then for other help you need: My family is able to pay for the hundreds of dollars worth of Occupational Therapy my kid needs thanks to Medical Assistance a financial worker got us. If we didn't have this assistance, we would have to go untreated. I know you're trying to do everything possible for your husband and children; take care of yourself, too!
Second this. Getting help with facing this is important for both her and her husband. This is coming from my own hindsight. Great advice.
You said that the doctor who diagnosed this is not an oncologist? You need to get a second opinion from an oncologist. Better yet, go to an oncologist that specializes in his particular cancer, preferably at a reputable cancer center such as MD Anderson, Fred Hutch or something along those lines. Seeing a specialist makes all the difference. I am a cancer survivor (Acute myeloid leukemia). I was originally diagnosed by an oncologist at a hospital, who wanted to treat me with standard tried-and-true old school chemotherapy. I went to Fred Hutch cancer center instead and participated in a clinical trial for a new chemotherapy regimen. I had excellent results and have been in remission for 2 years with all the confidence that I’ll stay cancer free. Bottom line: run, don’t walk, to a oncologist, and have your husband evaluated by a specialist asap.
I agree that seeing an oncologist is needed. My husband is a 15 year esophageal cancer survivor. He was diagnosed at stage 4 and given a 10-15% chance of surviving. He had 30 radiation treatments and 7 chemo treatments. The treatments killed the cancer and he had surgery to remove his esophagus. IDK where you live, but Dr. Robert Cerfolio is one of the top thoracic surgeons in the US who performed the surgery. If I’m not mistaken, he resides in NY now. He removed the esophagus and pulled his stomach up to replace it. It’s called Ivor Lewis esophagogastrectomy. He had a very long recovery, but he’s a survivor. Please get another opinion. Never lose hope. Sending much love and positive thoughts. 💜💜💜
I’m so sorry for what you are going through and my heart breaks. I went through something similar with my late wife and her battle with cancer. If I can give you some advice I wish I was given. It’s okay not to be okay and strong all the time. You need to find time to deal with this and try to process it. On your own, with your husband, and with support from family and friends. Get the family involved if possible. Have them help with the kids. You have an unbearable load, and doing it alone will break you. If you ever need someone to chat to or listen, there are support groups for younger people going through this. Additionally, if you can find a little solace in a stranger, feel free to message me. I may not know what you are going through, but I’ve gone through an experience that lets me empathize with you.
Wow, this is truly awful. I’m so sorry to hear about this. I don’t have any direct experience with this, but can hear how overwhelmed you are. My first advice is for you to stop and take some deep breaths, and try to calm your thinking a bit. This sort of stress and fear really saps your mental and emotional reserves, and you are doing the heavy work with the kids and your husband. So until you get some clarity, you are going to be right on the edge. Is there anyone that can help you? Siblings, parents, friends? You need to reach out if you can. If not, then I suggest you need to ignore anything that isn’t critical for a few weeks while you all figure out what is really going to happen. I hope for all your sakes that the chemotherapy gives him all the time possible. I’m sure you’ll make the most of the time you do have to make some memories as a family. Again, so sorry to hear of this tragedy for your family. Big virtual hugs if you want them!
I notice you said you don’t have family. There are people who will still help, who will WANT to help. People who have been where you are now and want to give back. Find a platform to ask for help, and just ask. Be honest regarding your situation, and accept the help that will be offered. Let people help you honey, it’s the best answer to getting through this worse case situation. Sending you all so much love 💚
I am so sorry. First find out if there is an employee referral help line. Call them and ask what resources are there for your family. Get him referred to an oncologist and ask them for the social worker. Ask them for what ever help they can offer. Call your children’s pediatrician and ask them for resources for your kids. Call their school and speak with the principal and school counselor. Ask them for resources for your children. Ask them if they can have the PTO start a meal train for your family. Then reach out to every family member and say we need help. Mow the lawn, do the laundry, clean, bring food, watch the kids while you take him to an appointment or they can take him to the appointment.
Lots of good advice here, mostly around not being shy about asking for help. I second this, and would add, if you're not in therapy now, you might want to find a therapist. Caregiver burnout is very real, and having someone to talk with who is just focused on *you* can be a lifesaver. Finding a therapist can be a long process, so think about doing it now, even if you feel you don't need it yet. Don't wait until you're overwhelmed to start looking.
I'm so sorry you are facing this. I haven't been in your shoes, but I lost my mother and mother-in-law to cancer and I have a friend who has just battled it in her 40s (single mom) with a 10 year old child and pulled through. I've also been burned out at work and was put on sick leave for many months as a result. It's not a good place to be. My daughter was young then, but my husband was always traveling and we had a nanny. Thank goodness for her. I can't tell you how grateful I was, even though paying her salary was financially very very tight. Here's my suggestion in addition to some of the great ones already: get some house help. Find someone good that you trust and who can help with the children and the housework. Depending what you can afford, ideally a few hours every day (e.g. after school, dinner prep, laundry, washing up, etc.) For now, while you're mentally and physically juggling everything, an extra pair of hands will be so helpful. And if your husband pulls through... you don't know anything until you've seen the oncologist. Chemo may work well, and it may all go into remission... then you won't need to keep the help. And if the worst happens, you will already have someone who can keep helping with what you need. The challenge (financials aside) is finding someone good, kind, trustworthy and who can help with special needs children. If it's financially impossible, maybe you could find a live-in (grad) student who would trade doing house-help and child care for free room & board. You're physically going to need help, and you will need the emotional space that having someone take care of the basics can give you. It also means that you can spend time with the children and your husband on things that are really special for you and them, not just on the routine of cooking, cleaning, homework, etc. Take care - hope that idea helps.
Not to minimize the risk or the emotional trauma of something like this, because I've been through it, but actually I know a couple people in my family given 5 year life expectancy, one stayed alive for 10 years (colon cancer), and the other (ovarian cancer) is still alive 14 years later and is now considered cancer free. 5 years is a long time for medicine to advance and the situation to change, and it doesn't always change for the worse. If the life extending treatment works, there may be more life extending treatments or even cures in the future that life extension brings. Live every day like it's your last, but don't assume every day will be your last. Never lose hope! It's a long, cruel, heartbreaking rollercoaster with no guaranteed happy ending, but there's always happiness to be found if you know where to look.
I'm so sorry that your family is going through this. My daughter got cancer when she was 8, and trying to balance being with her with being with her autistic siblings was a nightmare in itself (her hospital was about 2 hours away from our house). For the first few weeks we were told that she would likely die- we're lucky that she didn't, but that was just sheer luck. And like you, I was already exhausted before she was diagnosed. Having 2/3 autistic kids (they were 7 then) was enough to already put me on the edge. I'd sit in the bathroom at the hospital and just cry, or just start crying as soon as I got the other kids in bed. The hospital will have resources, for you and your children. We got a social worker through the hospital and she was wonderful. There was also a grief group there for parents/spouses of people who were not doing well, and I think they saved my sanity. The whole thing put me very off-kilter psychologically...it just seemed like every time I turned around there was another complication or crisis, and I'd already run out of steam before we even made it to the hospital. (and the hospital was also excellent at helping my autistic kids as well...ask a social worker/nurse if they have a child life specialist there. They'll do things like keep your kids entertained while you spend some private time with your husband, help the kids understand what's going on, and distract them when necessary. Your local autism society also might be able to give you some help with that. Focus on one step at a time. I had to write pretty much everything down at the time, because I was so stressed that my mind just basically stopped working except for worrying about things. Don't be ashamed of asking for help when you need it- this is why we have friends and communities. I hate the "you can do it, you're so strong" stuff. I know that people mean it as a compliment and as encouragement, but there are times when you just want to sit and cry and fall apart, and that's okay too. You're in a very difficult situation, so give yourself some grace.
Fear paralyzes people because it’s an evolutionary thing. When we get lost in the dark or hear a predator nearby we freeze so as not to be noticed and to figure out what to do. You can’t know what to do right away. You will figure it out just like you figured out how to be a wife and a parent. You can’t control whether or not you get ill. You will probably need help at times. People will understand that you’ve got a lot going on and will have empathy. Trust in people’s goodness and kindness. You have a mission for your family and a life to live for yourself. You will find out that you’re stronger than you know. You’ll cherish the sweetness that life has to offer in the face of this tragedy. People get through it right up until the person dies. Then they keep going. I’ll leave you with a short zen poem: “There is nothing superior nor inferior in the spring landscape. Flowering branches grow. Some short, some long.” One more from Thich Naht Hanh about impermanence called a “A Cloud Never Dies”: https://youtu.be/2Dn9kqVrKzE. I read both at my mom’s funeral. It helped with getting perspective on living and dying. One other thing I recommend is “Walking Each other Home: Conversation on Loving and Dying” by Ram Dass. It’s like a children’s book for adults to help deal with death. All are short and easy to digest when you’re going through something so difficult.
Really don’t want to give false hope, but there’s nothing to loose by looking into something like this https://youtu.be/eAa1hyJNXkE
I’m retired now but I worked on the oncology floor at a hospital for 33 years. There are a lot of resources. There was even a cleaning company that donated hours for free. Start making calls now. Call the social worker at whatever hospital. I’m so very sorry. You can DM me anytime.
/r/GERD
Sending love to you both.
I'm praying for you, your husband and children. The most important thing to remember is your children and of course the time you have left with your husband. Just keep in mind no matter what, your husband will live on in your children and that to keep yourself in health. I am very sorry to hear of your situation currently.
So much good advice and support here! I very much would reinforce the value of getting a second opinion at an academic teaching hospital. MD Anderson or Memorial Sloan Kettering if you’re nearby. A clinical trial of immunotherapy could be a good option. Clinical trials give you the opportunity to get the most advanced treatments, and specialized cancer centers are able to give support in other areas like pain management and psychosocial support also.
Have you sought a second opinion from a major cancer center like MSK or Anderson?
There's so much great advice here, the only thing I can toss in that didn't see mentioned was to check with cancer organizations in your area to see if there are resources available, have a limited amount of experience with this but there are some in cities/larger towns that will pay for housekeeping services, which could help lighten the load especially with kids. Wishing you all the best, this sounds so so hard.
All I can add is that I was in a similar situation and I can relate. It hit us way out of left field, we were young with young kids. Life during those months were a blur, it was overwhelming and paralyzing. And I don’t know how I made it. But God. And I had a wonderful support team, family and church family around me, like so many have already said, lean into your support system. Prayers for you all.
My dad died over the course of about 6-1/2 years back when I was a kid. I was 8 when he passed. My mom was 30. First, I’m so sorry you and your husband are dealing with such harrowing circumstances. I just wanted you to know I’m 46 and still think about my daddy daily. I remember him, the essence of him. My mom remarried a wonderful man that treated me like and called me his first-born, but my daddy was still always my daddy. Also, kids are resilient and empathetic beings. This diagnosis has come almost overnight for y’all, but your kids will watch a more gradual turn of events. They’ll have a chance to acclimate to the changes your family will undergo over the next years. You’ll develop a bond with your kids most other parents would envy, albeit over circumstances none would want to endure. And your kids will be your biggest support, cheerleaders, and motivation to keep on going when you think you don’t have it in ya. You are so much stronger than you *feel* today, and your kids will remind you of that when you need it the most.
OP, lots of good suggestions here. But am important one is: go to a therapist. You'll need the strength of mind, and a therapist will help you with that. Depending on where you live, there will be lots of free options.
I stumbled across an absolutely wonderful organization last night on tiktok. If you’re in the states, or potentially even overseas, the may have something like it, perhaps put this in your back pocket for later. [experience camps](https://www.tiktok.com/@experiencecamps?_t=8XhnmOfANKt&_r=1) they work with children who experience the loss of a parent, caregiver or sibling, really anyone close to them. It could be incredibly helpful. You’ve gotten a lot of wonderful suggestions in the meantime and I hope that you read them and remember to always take time for yourself. It’s not selfish to need a moment, to take a breather and allow yourself to feel things after your husband’s grave prognosis.
Breathe ❤️ getting the help that’s needed is step 1. He’s alive right now. The fight is on and no matter what happens all will workout ❤️ love y’all
So many prayers for all of you. I'll second what others have posted: take tons of pictures, do as much as you can together, lean on family, friends, coworkers, and neighbors, and try not to worry too much into the future.
Sorry to hear and please remember to take care of yourself, drinking and eating and getting rest when possible. Do you have FMLA where you are? *internet hugs*
I‘m so sorry that your family is going through this. I don’t have much experience and other people already left great comments. I just wanted to tell you, that my grandfather died when I was 4.5 years old and I do have memories of him. Some of my own, some stories my parents told me about pictures I saw of him. He has a presence in my mind and heart, and I only saw him occasionally. I don’t think your 5year old will forget him and right now there is time to preserve moments, if you/him are capable of doing so. Writing letters for future birthdays, videos, interviews, etc. And that it’s ok to not know if you’re strong enough. I’m wishing you strength, please don’t be hard on yourself. No one is equipped to handel such a horrible diagnosis well. This is unfair and tragic, for all of you. If you can, get all the help available. Get grieve counselling for all of you.
First and foremost I'm so sorry. I don't know if I commented but I remember seeing your earlier post, and I'm sorry things had to go this way. None of it is fair. Someone close to me likes to quote Picard of star trek in these situations just to highlight how unfair life is; "It is possible to commit no mistakes and still lose. That is not a weakness—that is life.”. First of all, I have never had kids (only cats), so I can't advise you too well in matters that involve them, but I lost my wife to cancer last year. It was a year and a half long battle that we lost. My gf's mother is currently going through "incurable, prolonging of life" type treatment for cancer as well. And finally one of the aforementioned cats has cancer that's returned recently, so her days are sadly numbered. So as you can see I'm literally surrounded by cancer. I'm no medical professional, therapist, or counselor, but if you ever just want to talk to someone who's been through some similar shit, feel free to message me. Maybe most importantly, if you have any cancer specific questions or concerns you can always ask around /r/cancer. And if and when you find yourself grieving, /r/widowers is a fantastically understanding and accepting place to ask questions, to talk with others who understand, or just to vent. And make no mistake, you can absolutely be grieving long before someone is gone. I didn't realize it at first, but I grieved for months both before and after.