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Feeling lost with husbands cancer diagnosis
Kajo
4 Posts
Husband was diagnosed with esophageal cancer. Apparently a new one not associated with smoking and drinking. It has also spread to liver, kidneys, lung and lymph nodes. He has lost almost 50 pounds. I am terrified. He’s sometimes mean. I’m sure angry. I could think of a million things I’d rather be going through...and I don’t know how to deal.
I am lost.
18 Replies
supersu
90 Posts
Kajo

sorry to hear about your husband....yes I'm sure the mean comes from the angry -- for some reason folks treat those closest to them the worst!

make sure you take care of yourself!

Canadian cancer helpline - 1-888-939-3333
cancer clinic where he goes should have some social services support available to you also
there are lots of folks here that can support you
stay safe this weekend, and enjoy the peace of the season if you can

hugs
su
Trillium
959 Posts
Dear Kajo‍ - so sorry you are feeling lost and terrified and unfortunately you are not alone. I’m going to introduce you to Brighty‍ who has a similar experience with her fiancé. EB91‍ and lja‍ can you offer words of support for Kajo? Thank you!

The number supersu‍ gave you are more than willing to talk with you. Don’t hesitate to call them for a comforting voice on the phone. Also altachica‍ told us about this group for caregivers which you may also find helpful. https://wellspring.ca/online-programs/programs/all-programs/caregivers-connect-support-and-relaxation/

Under cancer types you will find the digestive forum where you can post questions or just read through.
https://cancerconnection.ca/discussions/viewcategory/65

This guide from the Canadian Cancer Society has the best info on esophageal cancer.
https://www.cancer.ca/en/cancer-information/cancer-type/esophageal/esophageal-cancer/?region=on

Also from CCS for caregivers
https://www.cancer.ca/en/cancer-information/living-with-cancer/caregiving/?region=on

Join us on the caregiver forum too there are many topics for you to read through.

Keep talking to us. We are here for you.
Brighty
6457 Posts
Kajo‍ hi.... I will be in touch with you soon as I can...thanks for tagging Trillium
Brighty
6457 Posts
Kajo‍ hi there. Sorry it took me a bit to get back to you. Back in 2017, I walked the same path as you. My fiance, who was 42 at the time was diagnosed with stage 4 esophogeal cancer, right before our wedding. It was devastating. It turned our lives upside down. A once funny, strong, smart guy, full of life turned into a former shell of himself and things were never the same again. He became angry, depressed, and often very mean. And like supersu‍ said, we often take out our moods on those we love the most. He knew I wasn't going anywhere and it was easy to take out his frustrations on me, because I was there and who else was he going to do it to? He was going through so much inner turmoil, so much self torture, trying to deal with all the emotions on his own and it came out in the worse way, on me. He was not the best communicator of feelings to begin with. He was trying to protect me from what was going on, and he was also thinking that he was a burden on me. Told me many times I should leave and get on with my life. I wasn't going anywhere. Is he willing to talk to someone about what he is going through? A professional, a social worker. Specifically, the oncology social worker. Someone who is not in the situation and can be objective. My guy was not willing to talk to anyone. So the only thing left for me to do was get help for myself. So I did.
I reached out to everyone and anyone. I popped into the oncology social worker whenever I could to cry. I called my family doctor and told him I couldn't deal and needed help. He got me into a day program where I had a social worker to talk to on a daily basis who taught me many coping strategies. Most, importantly, self care. You can't be of any help to anyone, or of any support to anyone if you aren't good to yourself. That meant eating, sleeping, seeing friends, asking for help when needed, taking breaks from cancer, keeping routines and doing mundane tasks. He also taught me to set boundaries. My guy was not to treat me poorly whatever he was going through because being the primary caregiver, I deserved respect too.
I was never any good at asking others for help, but after falling apart , I realized this is not something I can take on by myself and needed help. It took my mom to speak up on my behalf and get his family to pitch in, because I was so passive. They needed to help with driving to treatments, take turns with appointments, help with the care. Period. Be specific about what you want others to do,and say you simply feel overwhelmed and can't do this on your own.
I found that when spending time with my fiance it was best to let him know how much I loved him and would be there for him, but not to pressure him. Let him take the lead what he's in the mood to do, or talk about. You can still spend time with him doing 'normal things" like watch the hockey game together, talk about work, play a card or board game. It doesn't have to be cancer 24/7. Simply being there, sitting together cuddling on the couch is good enough.
Now lets address the issue of the weight loss. Esophegeal cancer is famous for that. Because of where the tumour was located, my fiance could not eat or swallow food either. He went down to 97 pounds. Is he able to eat anything orally? The best person in this case to consult with is the oncology dietician. He or she will give you suggestions on foods he is able to consume easily that will give him enough calories to sustain him. If all else fails, there is the feeding tube. My fiance had it and it wasn't as bad as it sounds..........it was crucial that he had food intake any possible way he could get it. It is a procedure they do in the hospital....and before going home the nurse will teach him and you how to use the tube and what you can put in it.
It is not an easy road you are on. The emotions, the roller coaster, the anxiety, the helpless feeling, I've been there and felt it all and then some. I got through it somehow and you will too. You don't have to do it alone, nor will you. We will be here to support you, to listen and walk by your side. Keep in touch and let us know how you and your husband are doing. Is there a treatment plan in place yet?
Kajo
4 Posts
Brighty

Hi...thank you for reaching out to me.
yes, this is like nothing I’ve ever been through. I could think of a million other things I’d rather be going through. He started having difficulty eating in the summer...constant hiccups, to the point of vomiting. He’s lost 50 pounds in a matter of a couple months. He’s down to 140.
I feel so incredibly helpless...he gets upset when I ask him to eat. Or drink fluid. He’s so angry. Mornings are horrible. He gets up and forces his frail body to the recliner, where he spends the majority of his day. And, like your fiancé, he’s never been one to express his feelings. I’ve been forcing ensures and boosts, and offering, what feels like constantly, to make him something I feel will “slide right down”.
it has spread to his liver, kidneys, lung and lymph nodes. I am TERRIFIED, to say the least. And he has started radiation...just on his esophagus, in hopes of shrinkage so he can once again eat. So, we’re 2 treatments in to the 10 that are scheduled, and it’s kicking his a**. I guess chemo is the next step. We go for consultation on may 4th.
I don’t seem to have a minute to myself to call any numbers...mostly because I’m afraid to leave him. And as for seeing friends...I feel so guilty...cuz he can’t do anything “fun”
I also can’t eat in front of him...cuz why do I get to enjoy a meal when he doesn’t...?
I am just...god, so many emotions. But my hardest feat is trying to stay strong for him when I am falling apart.
I will make an effort to take better care of myself, and make some calls.
I’m also concerned about the fact that his GP is useless. I don’t want him to see him anymore. He hasn’t seen a gp since this started. And hasn’t seen his radiation oncologist since our consult. (March 25th)
so basically no one is checking on him.

sorry if I’m rambling. My head is going a million miles an hour.
Whitelilies
918 Posts
Kajo‍ Hello.....I am sorry to hear how difficult this all is.....
Perhaps......try.......once he is cleaned up in morning....make a "new routine"...that from 9am to 10am you are on a walk/solo.
Take your cell phone....and make some calls....find a quiet bench....and call whomever....doctor office....old friend....this will be your time.
I understand not wanting to "eat a full meal" in front of him; how about, you can sip a tea, beside him, on couch.as you watch the news....
You cannot "make" him drink Boost/Ensure....you can place it, in front of him...with glass, with napkin.....and leave it there.
You can offer only so many times. Try, same "routine" at 7pm.....you will take a bubble bath/lock door (laugh) and just feel the water and warmth and breathe out.....7pm is your time. You will have "this time(s) " to look forward to.....to re energize you.....to better support him.
Most hospitals have a Patient Navigator....mine had 2.....this is a Nurse, whose sole role, is to support patients/oncology and their loved ones, with any support needed. I had my Navigator on speed dial. Find out if your hospital has one on staff. Call and make appt.....in fact call at 9am; your NEW me time!
We are all here to support you....and your husband.
Warmly
Whitelilies
Kajo
4 Posts
Whitelilies

Thank you❤️
I will try all of those things.
but....is it wrong of me to think...that if he doesn’t want to “eat”, (or keep up some nutrition intake) that he’s not “fighting”? Because that’s how I feel. He needs nutrition and strength to fight this. And I need him.
Brighty
6457 Posts
Holy Kajo‍ your situation is just about identical to what I went through! Mine fiance would get so angry when I asked him to eat too. The thing was.. eating for him was so incredibly physically painful for him and he would just end up vomiting. You might want to consider the feeding tube. He would also just lie around all day barely moving. Part of that was weakness from lack of nutrition and part was depression big time. Oh man I felt so incredibly guilty too for being able to eat. I tried not to eat in front of him either. It was so hard.
I get not wanting to leave him.... is there someone else that can be with him for while you get out a bit? Or when he's napping? You need to do this for your own sanity.
if the doctors are negligent, just keep bugging them and demand he be seen. If you don't have the strength then maybe get someone to do it on your behalf. To be honest, although I'm in my 40s, I was so beaten down by being a caregiver and the demands I just didn't have tbe strength to muster up half the time. Being in my 40s or not, my mom had to speak up a lot on my behalf sometimes I could do it,and other times I just didnt have the strength ,energy or where-with-all to do it. No shame in getting a family member to advocate for you if need be. Please take care of yourself and do whatever you need to do. It's not selfish. And yes.. don't forgot oncology dietician. .excellent resource.
Whitelilies
918 Posts
Kajo‍ If he is not eating......he is still doing the best he can, with the strength and will, that he has.
When my dad was ill......he too did not wish to eat.....I would do everything,.....to "try" to "make" him eat.....nothing worked......I did not feel I gave up....I felt I gave it my all. I let him/patient be the leader......
Leave some Ensure in a glass (you can open it/twist off the top part)...pour some out.....place 2 crackers beside glass....and make a "Dinner Date".......use humour with food.....sprinkle cocoa on top of crackers (if permitted)....pretend it is a campfire.....
9am tomorrow.....is your NEW time, for YOU.
Enjoy. No guilt. It is for the "Best" for you both.
Regards
Whitelilies
Boby1511
363 Posts
Kajo
hi there, sorry to meet you here.
I know with my chemo eating (mouth sores) was painful and I had no appetite. But my people just kept bringing me food. Sometimes I would nibble out of habit more than desire.
I too had radiation. Your radiologist should be checking on him fairly regular. I seen mine every Wednesday. The techs that do the actual radiation can pass on any message to his doctor. If you have any concerns mention it.
Your husband taking steroids (with treatment), this drug brought me a bit of uncontrolled rage. It amps you up a bit.
Try to take care of you. Perhaps go for a little ride, get some food. You need your strength.
Kajo
4 Posts

@Brighty i also have a chubby, furry buddy named Token…he’s actually fat lol…over 15 pounds and only maybe 10 months old.
he is my rock right now. I hope Vinnie is doing better❤️

Brighty
6457 Posts
Thanks so much Kajo‍ ! I miss my Vinnie terribly. I've been crying for 3 straight days. I pray he can come home tomorrow. He saved my life and I hope that I can save his now. I'm totally lost here without my companion. I'm so glad you have a chubby furry buddy too!!!!! There's nothing like a pet. :-) Keep me posted as to how you and your husband are doing.
Cynthia Mac
3080 Posts
Kajo‍ I’m caught up on reading your story now. I’m really glad that others have chimed in to support you - especially Brighty‍ , with whom you have a lot in common, and Whitelilies‍ For her excellent suggestions toward self-care. I was caregiver for my Dad during his lung cancer journey, and I want to echo the importance of self care.

We tend to use two adages here on the site, one being the oxygen mask, the other the water glass.

On an airplane, they consistently tell us to don our own oxygen mask before we try to help others, and there’s that old saying that if your own cup is not full, you cannot offer water to save another. So, you need to replenish your own glass from time to time.

In your case, I think Whitelilies’ suggestion to set aside two blocks of time per day is a minimum for you to take care of things that need tending to when your husband is not within eyesight or earshot - and that includes eating.

A suggestion for him, if you are able to get him to eat anything at all, try to ‘bulk up” whatever it is: add butter to soup, add whey powder to smoothies, add whipped cream to ice cream... anything to incorporate more calories into his diet.
Cynthia Mac
3080 Posts
Kajo‍ I’m making a second post for this. I hope you find it helpful, and if it isn’t please just accept it as my ramblings:

I latched onto your word “terrified” in your post. It was the feeling I had the day I learned of Dad’s metastasis. It’s a natural emotion, but it rarely serves us well, and I’m sorry you’re in its grasp. If you want to talk about it more, you can pm me.

Do you write at all? It might help you to journal about it. Just write it all down, and let the writing go wherever it takes you.

Another idea is one that happened for me when I had a friend do the “what if game” with me at a time in my life when I was terrified. It helped calm me down, because it broke my “terrified” down into manageable little bites. In my case, it went along the lines of,
“I’m terrified of losing my dad.”
Reply: “OK, what about that terrifies you?”
“Well, he’s always been there to give me advice.”
“OK, and you get that the natural order of things is that we lose our parents, right? And, has he given you enough good advice for you to make intelligent decisions?”
“Yes, but I just don’t know what I’ll do without him!”
“What did you do when he wasn’t well the year you needed deck boards replacing?”
“I hired a guy.”
”So, you know how to do things without him.”
”I guess, but... and I go on with the next point, and the process continues, until I understand that I really have inner strength and my dad taught me how to stand on my own, but my “terrified” had momentarily stolen that from me.)

This could equally be called the “yeah but” or “devil’s advocate” game but regardless, it has the same potential outcome, and I hope sharing this will help you.
EdGB
19 Posts
Kajo‍ sorry to hear about what you’re going through. My wife has liver cancer, and has spread to her lungs, and I’m her primary caregiver.
What I can tell you comes from a similar bout I had a couple years ago, and may be of some help?
some men are “trained” from a young age to be cold, cruel, and somewhat heartless. We don’t talk about things that would make us feel weak or in any way helpless. It’s stupid, I know, but some of us were just raised that way. When presented with something we can’t understand or control, we get frustrated, then angry. Because we don’t understand it, we lash out, and the ones closest to us bare the brunt of that anger. It takes time, and some self reflection for us to come to grips with what we are dealing with. I know it sounds ridiculous, but, that’s just how we are. Now, as for how to deal with it, if we feel like we are being told to do something we don’t want to at the time, (eating), we will lash out. Go ahead and leave something out, saying something like “I got this for you if you feel like having some later”, never use the phrases “you need to” or “you have to”, that just makes us angry again, being told what to do.
Leave subtle hints, like leaving a notepad out with some web addresses on it, such as this one. Plan a trip to the store ( part of your “alone” time), just before heading out, something simple like “I’m going to the store, anything special I can pick up for you?” That’s it, if the answer is no, away you go. Don’t fuss, don’t coddle, don’t do anything any different than you would any other day. Give him time to pout, feel sorry for himself and process what’s going on. I think you will find the more hands off you are for a bit, the easier it will be, for the both of you, and the switch will just flip at some point. When it does, he will likely want to carry on like nothing has changed. At that point then, it will be much easier for you to become involved, as he will have been able to wrap his head around what’s going on.
Give it a try for a few days. Being a stubborn hard a$$ myself, I know no amount of outside “suggestion “ will be received well, all you can do is give time and space, and be prepared when he finally opens up.
D1955
43 Posts
Kajo‍ ‍
Welcome. I am glad you have found this space. It has helped me through some tough days and nights.
you have gotten some great advice from Brighty‍ , Whitelilies‍ and EdGB‍ .
My husband lost 55 lbs very quickly as he could hardly get water to go down his throat was so swollen. His radiation treatment had t‍o target his neck and as a result it permanently destroyed his saliva glands. For a month he had IV fluids administered daily at home to keep the minimum amount of fluids in. He refused Ensure. I get what you mean about the family doctor but at least ‍ his threatened a feeding tube and that seemed to be a turning point in my husband. He would drink a carnation instant breakfast daily and started on soups. Eating is still difficult but it has been a year now . The swealling is gone thanks to Ibrutinib daily and always a glass of water beside him.
I do recall how steroids affected his moods and anger. Some times i would sit in the car alone and cry or scream but this site has got me past needing to do that.
I am a nurturer and constantly want to make him comfortable, get him to eat, etc. Your husband will have to want to try. I recall one argument we had I challenged him that if he loved me he would fight to get past this hurdle.
He is sitting here beside me and just commented that he does not remember the worst of it. I am glad of that. We have been keeping a journal all along too as this 13 year journey has had a lot of hard days and weeks.
Covid will be controlled soon we hope and all other help sources eill be eatier to access.
Out local Hospices offer support to care givers as does Hope Springs .
I have used the social workers at the Cancer Center to get me past the "no one is helping him" stage.
We are all here for you.
Cynthia Mac
3080 Posts
EdGB‍ , as you’ve illustrated so well, anger is a most difficult emotion to manage - within ourselves and for others! I suspect that a lot of therapists have made a lot of money over “anger issues.”

When I was young, I was never allowed to express anger, so I internalized it. Conversely, my brothers were given “free reign” and lashed out at every opportunity (they still do).

It has taken me years to learn how to express my anger appropriately (withdrawing completely or allowing it to manifest as sadness just isn’t it), and constructively. As you point out, others struggle with that, too.

Thanks for your post - it’s bound to be helpful to Kajo‍ As well as others who read it.
MCoaster
506 Posts
Hi Kajo‍ What you are going through nothing in our former, pre-cancer life, can equip us for. Life becomes a jumble of emotions.
Your post has really touch many others here and I for one have followed your journey so far with feelings of admiration for your openness and commitment to your husband. I can add little to what other posters have said but also say keep on keeping on to care for yourself as well as your husband.

EdGB‍ Thank you so much for this! You may just have saved a few relationships, even those without the stresses cancer brings. Have just read your post to my husband of 50 good years - he had no comment but I know he will think about it! Your perspective fits in perfectly with what Cynthia Mac‍ shared. Thank you Cynthia Mac.

Can't remember who wrote it but the book "Women are from Venus and Men are from Mars" (don't know if that is the correct order) comes to mind.

Thank you to everyone for sharing and caring.

MCoaster
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