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More info on mom diagnosed stage 4 lung cancer
DeeBee31
24 Posts

Didn’t think it would take this long. But finally got a bit of a clearer picture.
its Inoperable and has spread to liver and brain. Without treatment, prognosis is 3-4 months. There’s a phone appt end of this week. Not sure which doctor, there’s so many.
will be having a meeting with her soon, then probably with both my parents.

My dad is very difficult to handle so I want to talk to her privately to get a good picture of what SHE wants, and to say things I might not be able to with him there.

I know she was very shocked at hearing the 3-4 months thing. Tbh, I had thought 4-6 so I guess I wasn’t too off the mark. Hoping we get a year or more …I just hope she tolerates treatment well and it buys some time, if that is her wish.

Really, I am so heartbroken. I have bad days, and better days, but it feels pretty surreal.

Was told she has nsclc. I know what the odds are, so I’m hoping for the best and bracing for the worst.

I don’t even know how to really put it on words. I know everyone must pass, but it’s happening so fast.
I am being strong for her, she never complains, she’s always strong and stoic, except when my sister died. But my dad and brother and nephew can offer no emotional support, so she needs someone. I can fall apart with my husband, and my boys, so I just try to be strong and capable for her.

But I’m just devastated. :(

16 Replies
Brighty
8709 Posts

@DeeBee31 so very sorry for your news. This insidious disease has destroyed so many lives. I think it's a great thing for you to meet with your mom privately, spend quality time with her, and get an idea of her wishes. I'm so sorry your dad is so difficult…I'm sure he is hurting but having trouble expressing his feelings. Forgive me if I stereotype, but men tend to hold in their feelings, because many still have it in their heads that men dont cry or express feelings. ….your dad, brother and nephew. Yes. Reminds me of when my fiance was losing his battle. Enter his dad, and 2 brothers. One completely disappeared and couldnt deal at all. No calls, no caring what so ever to his own brother. Other brother was good with the practical stuff, helping with driving for treatment, dropping stuff off etc. But if I ever cried or fell apart, forget it!!!! It was like put on your big girl pants and suck it up. His dad escaped to the golf course 24 hours or day and couldnt deal either. He told me to stop the crying, and continued on the golf course. And for the longest time I held a grudge against all of them for the way they behaved. It took me a long time and a lot of therapy to realize that was the way they dealt with it. The were hurting but they just dealt with it in a very different way then what I would have liked. 4 years later I'm still in touch with the family and frequently meet up with my fiance's dad for dinner. Hey who doesnt like a free meal? All kidding aside, you may want to be in touch with the palliative care team so they can help your mom have a good quality of life free of pain. I'm so glad you have your husband and boys to lean on but you may want to seek out counseling and get yourself prepared. Have something set up in place for yourself for when the time comes….I call it ‘cushioning ’ for the blow. Set it up ahead of time so you are not scrambling around when you are grieving. Spend lots of quality time with your mom, make beautiful memories, videos, pictures. Share recipes, music. And dont forget to take care of you. So sorry for the news.

DeeBee31
24 Posts

@Brighty
Ty for the reply. I am sure my dad is grieving, and probably panicking too because she’s HIS caregiver, essentially. That said, the issues go far far back… he was (is still) an alcoholic, though there’s not any violence now. However he’s been very controlling and domineering over that time, which is why I want to meet with her first, alone.
I moved out at 18, because my mental health was affected by my father. He’s not evil, but I do wonder about him being a narcissist etc…. There are mental health issues on that side of the family, my sister had schizophrenia and bipolar (but refused help or medication), my brother was the same as your BIL who can’t cope, always has done his own thing but now is in a care home after a stroke. It’ll all be on me, always has been.
I’ve been in therapy before and I am again, and due to anxiety issues I am on an antidepressant. We’ve had a lot to deal with in a short five years including my sisters death, 2 close friends, me being diagnosed with type 2 diabetes (I control it well not on meds), lost my job, my in-laws were in a head on collision with a drunk driver and MIL passed… and now this. I’m coping ok ish I think for all that, my therapist says the fact I’m on two feet and still going is testament to that… guess I agree.

I do have great support from my husband and two almost adult sons. And some friends and cousins, at least emotionally.
One uncle has stepped forward to offer help, and I’m going to approach my moms sister…unsure why she hasn’t said reached out yet, and don’t want to get my hopes up TOO much if she’s not willing, because I know I’ll be hurt that much more.
I will be seeing what supports the doctors can tell us about, specifically with rides or home care. I was just starting to get my energy/courage back to start looking at working again (that in itself was a bad, toxic experience, my last job, way too much to get into but overall it’s MUCH better for me away from my horrible boss who truly made me doubt my abilities and made me feel less than)…. And bam, cancer diagnosis stage 4, in my mom who has been the ONLY member in my family of origin that I could be close to and count on.

and the aftermath is going to be a REAL sht show (sorry), with my dad in particular because i truly don’t think he can care for himself, but has already said he’s not goin to a care home. And they’ve been in the house like 50 years, he won’t get rid of things etc. This is going to be one of the hardest times of my life, and I can tell you, I’ve been through some crazy stuff.

sorry to sound all gloom and doom. It’s just a lot. My husband is truly my rock when I fall apart. I might be able to ask for some help from his side, actually… his dad pulled through being in ICU and has adjusted well to life after MIL passed, and does like to help in many ways, ano my SIL is pretty great too. I guess if my own family won’t help, I’ll ask them, because I already came close to a burn out from the other things…. And I understand I WILL need help.

DeeBee31
24 Posts

@Brighty
And, yes, I’ve been spending time with her when I can, we speak a lot on the phone etc. I’ve been making her her fave foods, and started making amd freezing soups in anticipation of treatment and how she’ll probably feel. I’m trying to fatten her up a little 😊 and just spoil her how I can. I’d hoped (and please understand I say this without malice) that my dad would pass first, and we were planning on having her move in with us, spend whatever time she had left in some peace, I would cook everything she loved,….my boys and my husband and I all wanted that, but I guess it’s not in the cards. She raised my nephew, so she was pretty busy with him with adhd/Asperger’s etc, and soon after he was on his own, my sister passed, my crazy life events happened, then the pandemic… and basically I feel robbed of my mom 😢
The complication for me is I don’t drive (long story), but my husband always has gone out of his way for me and for my mom, he’ll do all he can to get us where we need to be. I have to try to just make her feel loved and comfortable

DeeBee31
24 Posts

and even as I say that, I don’t actually want to spend much time in the house I grew up, bad memories and feelings (yes some good too) so if she needs care, I’d very much give that to her, but don’t know how or if I can handle being there, and being around my dad. He makes my anxiety just out of this world.
This sums up my parents : I once had a dream that meteors were going to hit earth. My mom said it’s ok, we’ll go in the basement and cover ourselves with cold wet blankets.

my dad ran around like a chicken with his head cut off, screaming We’re all gonna DIE!
funny, not funny. But true.

Brighty
8709 Posts

@DeeBee31 thank you for your detailed response. You have so much going on…and have already been through so much. I'm glad to hear you are in therapy. I agree with your therapist, you are one strong person! And you are so good to your mom. I can certainly relate to anxiety issues…I struggle with anxiety, OCD and depression myself. I took a CBT course and I'm working on a work book called ‘anxiety and phobias edition 7' now. I highl recommend it. So glad your husband and sons are such a great support to you, and that your uncle stepped up to help. Yes, do approach your moms sister. I'm sorry she hasnt been in touch. It could be that she also cant deal. If she declines, approach your husband's family and be specific about your needs. I was too shy to ask for help when my fiance was ill…..and yes, got severely depressed and burnt out. Burn out is a real thing. I've posted many times before how passive I was to seek help from his family. I just kept making passive aggressive comments to my family until my mom couldnt stand it any more. ‘Must be nice to travel and play golf while your son /brother is ill’ was my famous line. Instead of just being direct. My mom called up his family and gave them nothing less than hell. My mom is NOT a person to be messed with, so they stepped up after that and helped. They were not given the choice. My mom is a tiny little 4 ft. 9 lady but people fear her! Lol. Anyway back to the topic at hand. …..yes, find out with the hospital what supports are offered and take whatever help you can get. Perhaps find out too, and prepare in advance if there are any supports available for you dad for when the time comes. I'm so sorry for the issues you have had with your dad and the hurt he has caused you. Going back to work could be a good distraction for you, but it also may be too much to take on now…unless perhaps something part time. So glad you are spending quality time with your mom. You are both so lucky to have each other. I also get you on the feeling of being robbed . Although it was not my mom I lost to this insidious disease…I felt robbed of my fiance, and the life we planned that was not to be. we both will always have our precious memories of our loved ones and no one can take that from us. Thank you for reaching out…dont worry about doom or gloom or any of that. You are pouring your heart out, and this is a safe place to do so…a place where people get it and will listen.

DeeBee31
24 Posts

@Brighty

thank you so so much. I have more to say but it’s late and I’m tired.
talk soon. Thanks again. ❤️

Essjay
2159 Posts

@DeeBee31 you sounds like a loving caring daughter who wants to do the best for her mom and will do. Your hospital will have a nurse navigator who can help you with the services you need, and the CCS information line 1-888-939-3333 is manned by experts who can help too.

It will be intense getting to appointments and getting Mom to appointments and starting treatment, and knowing that’s all about making her comfortable and extending her life as much as possible rather than a cure is really hard.

You will get through it, and we are here to listen and help where we can.

Looking after yourself is so important at this time, and if that means coming to an arrangement with your Dad to minimize contact with him - just do what you need to do.

He must be anticipating the loss of his life partner too, and of course if she’s been caring for him he must be wondering what’s next. That doesn’t have to be you.

sending hugs and hoping today is a good day. Essjay.

Kuching
459 Posts
DeeBee31‍ One thing that stood out for me in your post was “3-4 months without treatment”. Yeah, heard that one before. I also have stage 4 lung cancer, and was told 3-6 months without treatment, 1-2 years with treatment. That was well over 3 years ago. Apart from a few side effects from the drug I’m on, I live a normal life - still hiking, kayaking, and raking leaves at age 73.

So, obviously the next question is, what is the treatment plan? Are they doing biomarker testing? This ain’t over yet!

Hang in there, we’ve got your back!
JenG
257 Posts

@DeeBee31 It’s a tough haul, watching parents change in front of us, lose their minds, be shocked at news…I think of it as what parents must go through with us! I’m sorry to hear about your mom. There are lots of questions to ask about treatment - there may be something they can do to extend her life and maintain quality. Keep asking the questions.

I too am glad to hear you see a counsellor. I should have gone back to mine sooner than I did, but help eventually is better than none at all!

It will feel surreal for a while and it will be up and down and you’ll need some breaks.

Hugs from Sask,

jeng

Cynthia Mac
4215 Posts
DeeBee31‍ , I’ve read this entire thread and agree with the others that self care is going to be important for you, even if that means limiting contact with your dad.

My challenges with the home in which I grew up happened after Dad passed. Still, I get what you mean about not wanting to be there; I haven’t even driven past my parents’ house since we sold it almost 2 years ago. Not even tempted: that chapter is over. But for you, it’s not that cut and dry. And, I know what it’s like to empty out your childhood home after your parents have lived in it for over 50 years. I had a lot of help, and it was still quite a task. But, it sounds as though you won’t have to worry about that for a while yet, so set that one aside for now.

I know what you mean about your Dad going first - in my family, it was more an expectation that Dad would go first - even he was shocked when Mom went first. Because Dad was the smoker and heavier drinker of the two, and he “played” with things like engines and chainsaws, it was simply assumed that he would predecease her. Maybe if you imagine that your mom will get her “peace and quiet” on the other side, it will be easier to accept.

You did mention that your Dad’s alcohol-related behaviour has changed over the years, and, without knowing you or your Dad, I want to just ask, is it possible that his behaviour has changed enough? By that I mean, could it have changed enough that some of the past trauma is now truly in the past, and could you allow some of the triggers you have from experiences that are no longer apt to arise to be relegated to history? These might be good questions to go over with your therapist.

You mention how adamant your Dad is about not going into care. What is HIS plan? Is it realistic in any way? (I’m going to guess staying put and not even a little bit are the answers to those questions.) As I read your words, I wondered if your FIL could help by having a serious chat with your Dad about why it’s important to accept the help - whatever help is needed - and how to find grace in losing a spouse. Oh, and, if you can get to your Dad’s doctors, I would reach out and give them a very clear picture of the entire family picture - if they don’t already have it. Even if they do, if you can reach out to them, they could help you get some measures in place on top of what your mom’s health team might be able to arrange.

Do you have a notebook dedicated to your Mom’s care? I created one for Dad, and it really helped me keep which doctor did what and who she was seeing next. I also used Google Calendar and created a separate colour for any appointments I had that related to Dad. Google Calendar was really helpful to me. You could even use it for the whole family - give each person a different colour!

I really feel for you for all that lies ahead, and will do whatever I can to get you through this.
DeeBee31
24 Posts

@Brighty

6hanks again. I'm sorry for your loss. I am so incredibly lucky to have had the years I've had with both my mom AND my husband and I know it. My mom actually almost died after giving birth to me. I've often thought about how lucky I've been that she didn't and how different and potentially and probably worse My life would have been.


Trillium
2312 Posts

@DeeBee31 my thoughts are with you today. Life can be so hard when our parents are dying. You will get through this.

This course which can be accessed online anytime for free, teaches us how we can deal with anxiety, anger and stress even when we are going through really tough times. I went through it twice! Very helpful for me.

https://ontariocaregiver.ca/scale-program/

Warm hugs and keep talking to us whenever you feel like it.❤️‍🩹

DeeBee31
24 Posts

@Cynthia Mac:
DeeBee31‍ , I’ve read this entire thread and agree with the others that self care is going to be important for you, even if that means limiting contact with your dad.

  • I agree. I can’t predict for sure how he’ll react if indeed my mom passes before him. He’s threatened suicide on occasion (not just over this). He has mental health issues he refuses to acknowledge, never mind get help for himself.


I know what you mean about your Dad going first - in my family, it was more an expectation that Dad would go first - even he was shocked when Mom went first. Because Dad was the smoker and heavier drinker of the two, and he “played” with things like engines and chainsaws, it was simply assumed that he would predecease her. Maybe if you imagine that your mom will get her “peace and quiet” on the other side, it will be easier to accept.

  • yeah, it helps a bit. I just wanted to have her here and spoil her in a way I can’t while she’s still with my dad. Heck, I even debated having them BOTH come here just so I could take care of her, but after a few days of sitting with that idea, I know it would be a disaster in regards to coping with my dad.



You did mention that your Dad’s alcohol-related behaviour has changed over the years, and, without knowing you or your Dad, I want to just ask, is it possible that his behaviour has changed enough? By that I mean, could it have changed enough that some of the past trauma is now truly in the past, and could you allow some of the triggers you have from experiences that are no longer apt to arise to be relegated to history? These might be good questions to go over with your therapist.

  • This one, I’m very unsure about. It’s unavoidable at times, but it’s sooo hard for me. I come away feeling physically unwell. His behaviour is still extremely difficult. He still drinks and says things he shouldn’t, goes on and on in a very dark, negative way…and even if he’s just kind of inebriated, it annoys and somewhat triggers me. I have traumatic memories of some of the things that happened. And truthfully, it’s only been since my sister passed that I’ve really started trying to work through my past trauma. I used to hold the lid on that can of worms pretty tight… I think I knew that if it opened, it was going to be real messy and difficult. With all the stuff that happened in the past 5 yrs, including a precarious time in my marriage (we’re at a MUCH better place now but believe me when I say things were on the edge of a cliff… he was in a dark place for a while, but after almost losing me he’s changed, and I’ve learned not to emulate my mom and hold in the hurt. A wise therapist of ours once said “It’s not the conversations you have that cause trouble - it’s the ones you DON’T have.” He made selfish choices while I was struggling with grief over my sister, and had undiagnosed diabetes, while managing a hockey team, taking Care of my family and working full time in a stressful, bad job - and felt like I was drowning, basically. I’d say he’s like the man I first married, but in truth, I think he’s a better person, because we’ve both grown a lot, hes totally owned what he did and chose, and how he was focused on his own unhappiness at me being “not present” due to all I was juggling.He’s committed to us, to our family and has proven it). So I kind of just held that lid on tight, but after so much stuff I just couldn’t and off it popped. And yep, a big mess, one I was always afraid of dealing with, of confronting - but like most things, it has a way of presenting itself regardless of whether you want to or whether you’re ready. So, I just am unsure if I can handle it - being at the house I mean, and dealing with dad if he acts like he often has. I had a memory surface the other day, something I hadn’t thought of in years. I may be in therapy a good while trying to unravel things,

    “You mention how adamant your Dad is about not going into care. What is HIS plan? Is it realistic in any way? (I’m going to guess staying put and not even a little bit are the answers to those questions.) As I read your words, I wondered if your FIL could help by having a serious chat with your Dad about why it’s important to accept the help - whatever help is needed - and how to find grace in losing a spouse. Oh, and, if you can get to your Dad’s doctors, I would reach out and give them a very clear picture of the entire family picture - if they don’t already have it.“
  • Haha, you nailed it. He told my uncle he’ll just not take his meds so he can die. Here is how realistic he is… he can barely get around but still has this idea that he’ll go deer hunting again. My brothers son (the nephew I’m closer to) says his dad, my brother who is in a care home from a massive stroke, ALSO thinks he’ll go hunting again. And in regards to FIL, that’s a no go. My fil totally would. No WAY my dad would open up, no way he’d even go talk. He’s been invited to bbqs etc and NEVER has gone. And Ive been married 22 years. My husband tried to get closer, but gave up after a while (and he’s only gotten harder to handle amd more stubborn etc over the years). Believe it or not, I'm probably the only person who has the most minute chance of getting through, but, I’m not going to bang my head against a wall. I understand how his mind works, maybe my mom moreso but he won’t listen to her, his brothers any doctors etc. I’m not even convinced he’ll listen to me, he might cut off his nose to spite his face. My brother is the same, just more passive about it.
    My mom and dad have the same family doctor, so she has a good idea of both their characters and what’s going on. I do plan to call her. I know she can’t tell ME too much based on confidentiality but I thought she might have some advice or something. I know she’s tried to get him to take meds for anxiety etc and he won’t.

    “Do you have a notebook dedicated to your Mom’s care? “
  • I do. I actually started it this past summer after my bro went “missing” from the care home (he went DRINKING in his wheelchair and lost track of the time) and I got a panicky call from my nephew, and we nearly filed a missing persons report. Yeah the home wasn’t great about it either, but my brother got an earful, a diplomatic but firm and honest earful, from me about how he treats his son AND my mom. Anyways, the book now has three sections, my brother, my dad, and my mom. I have their will and power of attorney too. My husband is named as well in case I can’t be the excutrix (sp?)
    I was planning on getting a bit more involved in my brothers care to help support my nephew but about 1week after the drinking/going missing incident, my mom got told about the tumour in her lung.

    “I really feel for you for all that lies ahead, and will do whatever I can to get you through this.”
  • thank you so much. I’m struggling with it all on some days… but really just trying to do the best I can for myself, my mom, my family. these words of support from you all mean a lot.

DeeBee31
24 Posts

@Kuching

thank you, too, for the words of hope. For my sanity, I am doing the brace for the worst, hope for the best kind of thing.

she is a tough, stubborn woman born to a tough, stubborn Scottish woman

(lol, Brighty, when you said your mom was 4’9” and people were afraid of her, that was my grandma. XD)

I hope to get a couple years with her. i would call that a win. But I’m just trying to appreciate the moments I do have, and have had.


DeeBee31
24 Posts

@Essjay

yeah, I’m sure this time is really hard for him too. And I do feel for him that way. He just makes it really hard to show that sympathy when he’s being so hard to get along with, deal with, etc.

thanks for the kind words.

Haa
42 Posts

sorry to hear this diagnosis… i assume your doctor has done the biomarkers etc? my friends husband has this and has been on immunotherapy, and is back working….

i wish you well,

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