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Almost like the Diagnosis of Cancer all over

Faithful_Angel's picture
Faithful_Angel
Posts: 88
Joined: May 2011

Wow it's been awhile since i've even been here...

But Here I am Caregiver to my father with stage IV stomach/esophagus cancer.

Today was the day we had been waiting for, the day he had his scope and espohagus dialation. We thought just get through today and everything would be fine again. He'd be able to eat and drink again. I thought He wouldn't be in quite as much misery, pain and suffering... Nice thought.

Sitting in the surgical center..My nerves going crazy..as I have agoraphobia for those that don't know what it is..Fear of people and public places...anyway.. Finally we get called back to talk to the doctor as my dad is wheeled into the recovery room just like last time *last time everything was a success*

Expecting to hear "everything went great we were able to stretch the esophagus to the 18 cm like they were expected to do" .....well not the case...instead we see the doctor walk in running his hands through his hear and putting on a fake smile...one of those you know is forced by many years of training....

Here is what we hear... "Well, Things didn't go as well as we hoped..we had trouble even getting the scope in the esophagus, after blowing up "balloons" we made a little progress...we were not able to dialate much more than the span of the scope 9cm or mm i can never remember....anyway they stretched it to 11-13 if they were lucky.. Then he brought the pictures out... I thought I was prepared...but I looked and you saw the tumor where the opening should be..it made me feel sick instantly.. he took and pointed and said as you can see the obstruction...it's not scar tissue... we aren't sure how deeply rooted the "obstruction " is... I finally looked at him and said why don't you just say it.. The TUMOR... he said you are very observant yes the tumor...everything else is quite a blur at the moment.

After being to my dad's oncologist just last week being told "you are responding very well to treatment, the tumor is significantly shrinking, ect..

SIGNIFICANTLY SHRINKING???? wait how is it shrinking if it is growing... I just don't get it anymore. so now next step...

We are to see the thoracic surgeons in a week or so after the swelling goes down. Im having a real hard time with all this. Sitting there listening to these doctors was almost like being diagnosed all over.

I am generally a very strong person. But today has been horrible. I came home today from the surgery center went directly upstairs crawled in bed pulled the cover up and sobbed uncontrolably for over two hours... I feel like someone has kicked me in my stomach, and knocked the wind out of me. Im not sure what to do from here.

I've been the one to hold everyone together through all this and now im falling apart... any suggestions / help would be greatly appreciated...

In Desperate Need!!

Noellesmom
Posts: 1317
Joined: Aug 2010

Give yourself time to absorb the new information. Not sure why you got conflicting reports but I do know my father passed away from cancer which had gone from his lungs to his esophagus and we were told that if we could see it, we could watch it grow - it was growing so rapidly, in other words. Perhaps this is what has happened with your father - it WAS fine last week at the oncologists's last look but during the week it just took off growing. Who knows? And I'm not sure, at this point, it really matters.

I know how hard this is and I know how hard it is to be the one who holds it all together.

Find whatever support you can within your family and friends and lean on it, even though you are not accustomed to doing so.

Praying for you and your family during this difficult time of decisions and indecision.

Faithful_Angel's picture
Faithful_Angel
Posts: 88
Joined: May 2011

Thank you for the Kind words...This is all so difficult. Last night was all but sleepless. Between my migraine and still fearing dad would die in the middle of the night...getting up and checking on him every 10 mins has become the norm for me in the past 8 months...Ever since it's progressed.

I don't think i cried this much when he was first diagnosed. But we are never handed more than we can handle right? Trying to lean on my Faith today even though it was shaken. I appreciate each and everyone of you

Noellesmom
Posts: 1317
Joined: Aug 2010

Not true. What we are promised in the Bible is that God will never give us more than we can handle with His help. The last part is the most important.

Hugs.

neverquit
Posts: 221
Joined: Oct 2010

Faithful_Angel, Noellesmom is right; cancer is a wicked enemy and is fast and unpredictable. Just remember that she is also right about the fact that God is there with you and will help you get through this. Lastly, remember that there are many of us on this site that are also with you in spirit and thinking/praying for you and your Dad at this very difficult time. Mega hugs!

grandmafay's picture
grandmafay
Posts: 1625
Joined: Aug 2009

Those bad news days are very difficult. Sometimes it is even hard for the drs to give us the news. Yes, these are the times when we have to lean on our faith. Don't be afraid to cry when you need to do so. It is good for us to just let go at times. I'll remember both you and your dad in my prayers this day. Fay

Faithful_Angel's picture
Faithful_Angel
Posts: 88
Joined: May 2011

Fay,

You are so right. Difficult is an understatement, but i've had a few days to let things sink in and watch and see where things are at . I've sat and watched my dad drift in and out of sleep, We've tried to get him to try different things to eat and drink but it's almost as tho he's losing all interest. I'm afraid he's losing his will to fight.. Maybe it's temporary which I hope but I've also been shellshocked so to speak. I am now looking at things as they are.

I have a feeling we've seen the best days pass, and this might be the time we need to call in the family to see him. I've made some very hard calls this weekend.

Cried a riverfull of tears, i close my eyes and just think "I want to get off this rollercoaster that none of us had a choice to get on".

I'm not giving up that he can recover to some point but Im no longer promising myself he's gonna make it through this. As a Caregiver I don't know maybe it's just me but I've discovered I've thought positive to the point of lying to myself. So i've reevaluated and heading down a different path now. The path of reality.

I would not wish any of what We all have to experience on anyone. Thank you all for your kind words and prayers..

Val

grandmafay's picture
grandmafay
Posts: 1625
Joined: Aug 2009

My husband had several recurrences before the final battle. We found that looking at treatment as buying time rather than expecting a cure worked well for us. Some accused us of not being positive, but we really were. He wanted to buy as much time as possible and approached treatment with that mind set. We were buying time and making memories. I have some wonderful memories, too. I also gave up trying to get him to eat more. He ate when he felt like it, and I stopped nagging. It made for more pleasant meals. Positive thinking is important but there is more than one type of positive. Take care, Fay

DaughterDearest's picture
DaughterDearest
Posts: 22
Joined: Dec 2010

Val,

You sound exactly like me. Our situations almost mirror each other!

I'm a caregiver to my last remaining parent (my mother passed away 8 years ago from cancer when I was only 19). My father, now, has lung cancer which spread to his esophagus. He had radiation on the tumor in his esophagus over a month ago and is still unable to eat. Heck, he can barely get water down. The doctors think it's because of the swelling. They said it could be many months before he's able to eat again...if he lives that long. Thankfully he had a feeding tube put in or else he would have starved to death weeks ago. *sigh* It's so sad to watch. And for the longest time I felt very guilty if I ate anything in front of him or even NEAR him since he can smell it. He tells me the one thing he wants to do before he dies is be able to enjoy food again. He can't even enjoy the basic necessities of life! :-(

I'm the primary caregiver and am also on a rollercoaster I never wanted to get on in the first place. I feel like I just went through losing a parent...now I have to walk through Hell all over again.

One thing that's keeping me going (aside from supportive friends, family, and my wonderful boyfriend) is thinking of MY future. How one day I will be happy again. One day I will have a family of my own; hopefully 2 or 3 children, a loving husband, and a dog (haha, fine, and a cat). One day we will smile again. We will dance in the rain. We will be happy.

:-)

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

Yes, DD, I'm with you on that future life. I want to get three ducks for pets, but not until Mom no longer needs me (late stage ovarian cancer). I like thinking about the ducks, though. When this ol' war is over, there will be something fun waiting in the wings, be it babies, dogs, cats or ducks. Chin up!,

Faithful_Angel's picture
Faithful_Angel
Posts: 88
Joined: May 2011

DD
I so understand every aspect of what you are going through. I feel the guilt and even betrayal when i eat in front of him. I don't know how much more of this i can take. It's been a week *only a week* since his failed scope. I feel like it's been a year...

I sit here and watch him sleep just to make sure he's still breathing. That's the day i fear the day he stops breathing...I know i will have to take all the responsibilities on my own. My mother his wife lives in the house but she is now the sole breadwinner so to speak, My dad still is on FMLA --short term disability-- He's not elegible for long term disability because he was on it back in november and went back to work *which i knew was too soon* but you couldn't tell him anything..

The FMLA will end in about two months if he makes it that long. I don't know anything anymore. I am the main support to my entire family...And I feel like I am walking this alone. I just don't know what to do anymore.

He's getting so angry and all i've been doing since last thursday is crying in private like always because i feel the need to be the rock or glue if you will to hold this family together...

My brother lives 20 miles from here and has been here once in 9 months...and three phone calls...saying i wish there was something i could do...I've told him there is..come over and spend some time if not with dad with me ...i need a break.

But we all know how this goes..It's on me. And im not complaining but in a way maybe i am i don't know anymore.

So now with all the conflicting information the doctors are giving me, and my emotions, and trying to deal with the anger my dad is showing, watching him fade away, dropping all the wieght, not being able to eat or drink. The moment he does he gets sick, it just can't pass through his esophagus.. Im so Lost!!

When he was first diagnosed we talked about quality vs. quanity of life....i see quality slipping away and just don't know what i can do to make it better. I have been there and fixed everything that has ever went wrong in his life. Now I feel helpless and pretty hopeless..almost failing.

So please make those that are supporting you aware that you appreciate them because it's a very lonely walk without those that support..Having someone walk with you hand in hand through this is so vitally important...

Tomorrow we have a doctors appt with my dad's oncologist and getting pathology from a biopsy and Im scared to death!!! Im at my breaking point, I was so positive last week things would go well...I DREAD this appt.

Funny how i can support others right now...I have a ton of people calling me with thier problems i've always been a counselor of sorts but Im so overwelmed right now..it's only a matter of time before i fall over the edge.

Thank you for listening to me rant ....I hope you can make some sense of this....

Valerie

DaughterDearest's picture
DaughterDearest
Posts: 22
Joined: Dec 2010

Valerie,

I wish there were magical words I could say to you to make this burden you're feeling go away. Unfortunately all we can really do is live through this. "Keep on truckin'", as I tell myself.

Sadly, I've come to accept that my father is going to pass away.

When we first received his diagnosis a year ago, I had all the faith and hope in the world that he would make it through this nightmare. As time went on and he wasn't getting better, I came to accept that I will be, essentially, an orphan all before I turn 30.

My dad tries eating food the odd time, but since he can't get it completely down, he ends up vomitting it back up. He also produces a lot of mucus since he can't swallow anything. He has a "spit bucket" (as I call it) near the couch which he's constantly leaning over to spit in. I also notice his voice is very weak when he talks. He continuously coughs and coughs...and coughs. His coughing leaves him very short-winded, so after his coughing fits, he sits there huffing and puffing, trying to catch his breath.

It's so hard to watch.

I feel like I want to do so much for him, but in reality there's nothing much I CAN do.

My dad says I'm doing a lot for him as it is, but I feel so...helpless. :-(

Like you, I also sometimes sneak down at night time to check his breathing. I dread the day I no longer see his chest rising up and down... :-(

Also, because of his tumors, he can no longer sleep in his bed upstairs. He's been sleeping on our living room couch for over a month now. He's having a hospital bed put in, too. He's hoping it'll be more comfortable for him (he's been having severe back pains from our couch which is preventing him from sleeping/resting well), however I'm dreading it...my mother passed away 2 weeks after we had a hospital bed brought in for her. This is going to bring back devastating memories I really don't wish to re-live. :-(

*sigh*

Anyway, I'm sending all the well-wishes in the world your way, Valerie.

Even though I can't be there in person, please know you're not alone in all of this. I, and everyone else, will be here whenever you need us!

I just wish I could do more for everyone here.

Big hugs and lots of love!

Faithful_Angel's picture
Faithful_Angel
Posts: 88
Joined: May 2011

Well today has been the most trying day of my life....

We went to see my dad's oncologist...Im starting to hate seeing any doctor...
They have withdrawn all chemotherapy...I guess Im staring down that road no one wants to go ...

It's time for Quality not Quanity...
We were told he is to see a thoracic surgeon to try to get his espohagus opened so he can at least enjoy food...We've been told 2 months..

Me being the "rock" of the family...well I didn't do well today there i was sitting in the exam room... I crumbled...Chaos..Tears ect. I stepped out when the doctor did to make a phone call to my mom to inform her..I crumbled into dust...one of the nurses came and tried to console me and i got my first three words that are already wearing on me "Are You Okay? "

My question is this??? How can I be ok when i am losing the only man that has ever been there for me in my life. How can i be ok when you realize your mortality when you see your "superman" fading and so much faster than you expected.

I knew this day was coming and I thought I was prepared Boy was I wrong!!!!

so here we go, Making all these phone calls people dread to get....let me tell you it's so hard making them more I'm so sorry's and Are you okays?

I want to scream at the top of my lungs "NO I'M NOT OK" because im not right now...i know in the future I will be...but right now I'm not...Im sick. Im shaking, Im losing my hero! Where do i go from here. all questions no answers...but I can't focus on that right now it's about my dad i will pull myself together after some more tears, I will make sure he is happy, I will spend every moment i can with him, make sure we have good days, Take him to the doctors as neccesary.

Hospice will get involved at some point not sure when...Everything is so up in the air. My grandparents are coming down next week to see him. and here we go with the "are you ok again.. what can we do? umm come up with a miracle so no one else ever has to feel this pain PLEASE LET EVERYONE OFF THIS RIDE!!!
But I know reality, others will find them in my shoes my heart goes out to you. If you ever need me i'm here.

And to those that have been through this...any help with how to deal would be greatly appreciated.

I will be by his side until the fight is over. He will have the best care possible if i have my way about it. And the pain will be managed for him... My pain?? well i'll deal with that later i suppose. Thank you for listening to my rant...
I have faced every emotion today and Im so lost right now

Valerie

Noellesmom
Posts: 1317
Joined: Aug 2010

Just bunches of hugs, Valerie

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

Val, I know your pain. I was my daddy's girl, and he was a saint among fathers, and he died almost 10 years ago of pancreatic cancer. He was not himself for several weeks before he passed.

Please get hospice in as soon as possible. Dying is a process that they understand, and everyone in your family will benefit, especially your father. There is no reason to wait. You can get a referral from the oncologist's nurse by phone.

The only way to get through this is one day at a time. The anger will ease off. You are right about dealing with your feelings later. I hit a period several weeks after my father died when I couldn't stop crying. I saw a grief counselor for three sessions, and it's some of the best money I ever spent. Talk about peace! My dad has been gone from this Earth a decade, and we still "talk" all the time. It's good. Hang in there and good luck!

Faithful_Angel's picture
Faithful_Angel
Posts: 88
Joined: May 2011

Im in the process now. I just talked to the social worker in the office, she's working on getting the referral as i type this. Can you give a little information on what hospice does. I just had the difficult discussion with my dad about it. I told him it's not about me giving up on him. But getting them involved with the fight. But I am so unsure of what they do.

I want to make sure his wishes are honored. I felt misinformed before now i feel like a complete idiot. I have no idea what im supposed to do here..where to go...helpless, hopeless all come to mind .

any info i would love to have. I have mixed emotions about hospice and no knowledge

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

Val, hospice is all about comfort care, which means keeping the patient pain free and helping the family get through it. Ask for all the services you can get -- visiting nurses, sitters, nurses aides, whatever you can use. You will still have to do drug running (they can't carry morphine around) and do a lot of attending, but you'll have an experienced team working with you. Many towns also have inpatient hospice facilities, or hospice beds within a community hospital, if keeping the patient at home gets to be too much.

There's a book called Final Gifts, at most libraries, you should read. Written by two hospice nurses, it really helped me understand the dying process, and honor it.

http://www.amazon.com/Final-Gifts-Understanding-Awareness-Communications/dp/0553378767

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

Hospice is about patient comfort and SAFTEY. They are this way because if a patient gets admitted to the hospital, the hospital will do life preserving measures such as giving IV fluids which at this stage are incredibly painful. Your dad will sign a DNR, which preserves his wish not to extend life, but anything else is on the hospital and not hospice. The way our hospice nurse put it, "we have limited pull in the hospital. Once the patient gets there, there isn't much we can do." So keeping the patient out of the hospital by limiting slips, trips, and falls is a big thing.

Many people look at hospice as giving up. Hell no. Hospice is meeting death on YOUR TERMS and going out the way you want. I knew my husband wanted to be at home with his big screen TV, a beer in one hand a smoke in the other. And that's what he got. None of the nurses, the social worker, or the chaplain looked down on him for having the Breakfast Of Champions at 9 am - ice cold beer (with a straw because he couldn't move his neck.) He stopped eating, just wasn't hungry, and hospice told me from the outset to not force him to eat. His body could no longer process food, and it was painful for him to eat. Patrick had a PEG tube and took a couple PEG feeds, but the blessing of having a PEG tube came when he could no longer swallow his meds. Everything went through the PEG, even his beer.

Yes I mixed my husband's pain meds with beer and ran it through his PEG tube. Sue me.

Hospice at home was hard, I won't lie to you. My husband went the way he wanted, and it was an honor and a privilege that I was here with him when he left. I posted fairly regularly when he was in hospice (January 2011 and Feb 2011) so if it helps go back and read the posts made. Patrick was a crazy, stubborn, pig-headed Irishman and made life verrrrry interesting right up to the very end.

The way I explained it to Patrick was no more doctors, no more hospitals, no more appointments, everyone comes to you. And they do. The only other point I would think to give is hospice is giving cancer the finger. It's the last way to give this stupid disease a piece of your mind - "oh you want me to do what? I DON'T THINK SO GO ________________ YOURSELF"

PM if you have any other questions hun. This won't be easy, but I can guarantee you will never look back on it with regret. IMHO there is no better gift than walking your loved one down this road with them.

You can do this. I gots faith.
Loves and hugs,
April

P.S. Patrick had stage 4 laryngeal. he had surgery to remove it Oct 2010 (radical neck dissection and complete laryngectomy), it grew back and then some in 3 months. I remember the mucus well - before his surgery he was coughing it up all the time.

Faithful_Angel's picture
Faithful_Angel
Posts: 88
Joined: May 2011

Your Patrick is much like my dad*thomas* or tho it seems he's very strong willed. and even now acts like all is fine and he will be back to work in no time. So from the outside...it makes you wonder if hospice is even needed. But as i have watched him decline i know it is.

at this moment..He's able to do his tube feedings ect. but it won't be long before things will change. Im so mixed right now. my feelings are everywhere...just trying to make sense of it all.

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

to make sense of any of it. You can't. Right now, focus on your dad: spending time with him, letting him do what he wants (within reason. no skydiving!) He will act like he is fine, but he knows he is not. He is trying to be strong for you. Patrick did the same for me, and I was strong for him too.

The only thing that helped me was focusing on what needed done right then and making sure it got done. I didn't think about anything until after, well after, Patrick was gone.

Here if you need to vent. Be good to yourself.
Loves,
April

Faithful_Angel's picture
Faithful_Angel
Posts: 88
Joined: May 2011

April,

Your words melt my heart, Which is something i need right now. Thank you just doesn't seem like it's enough. I to am focusing on the neccessities right now. I was trying to look at the big picture and overwhelmed myself through myself into anxiety attacks. As I have PTSD im a domestic Violence survivor that's what makes this all that much harder, I left my abuser because of my dad. So My dad saved my life now i can't repay the favor but You know we would walk through fire to have just one more moment.

So now i'm going day by day, hourly if needed even by the minute. And I know he's being strong after a bad outburst yesterday of anger. I was what he focused on and we got past it. My dad is 57 and he actually cried today for the first time that i've seen since his mother passed in 1984. He cried because he was sorry he was mean to me. I feel bad that he feels bad.

He admitted he's scared today. Not scared of dying but scared of leaving me. And my mom. but me primarily. I've never seen this side of him, it scares me because i know it's him making sure I know how he feels before he moves on with his journey.

But in the same sense Im happy. Happy that he trusts me enough to let down those walls and talk to me. We just got back from the grocery store, it's a little thing but it's quality time with him I can remember. We needed his meds. and Some lunch meat so I keep eating...

Funny as a caretaker we forget to take care of ourselves. Starting monday everything is going to be even more chaotic..Hospice comes to Sign him up as they told me.. So great another club we didn't ask to join but I think this will be a good club.. I pray it is.

So not only has he made progress so have I . I took my laptop out on the back porch this morning while he was sleeping and just sat and played on farmville *my escape* so i took a few mins for me. I also took a hot bath and come to think of it..I think that's the first one I've taken in almost a year..I've been so focused on dad. that i was afraid to take a minute for myself. I would just take showers no longer than 5 mins..Afraid he would quit breathing or something...

I never knew how exhausting this would be. But in the last two days..since we got the news he was going to be facing the end..i've actually realized yes it's about making sure he does this his way...But I had to keep my strength up and do some things for myself..

Today he said " I just want you to be ok...I've lived a good life 2x over. I want you to go on and be happy" That was hard to hear and even harder to tell him and know that it was ok.. I told him I will be ok and I will find happiness, I will go on. I will hurt for awhile. But I will move past it. You will always be a part of my life. You will be in my thoughts and in my heart. But This is not over yet..but when it is..I don't want you holding on because of me. I want you happy and healthy and cancer free and when the time comes for your journey to take you away from this life into your other life You will have all that. "

So I hope im doing all this right. I guess time will tell.

Again April thank you so much to you and all the other people that have touched my life without you guys there is no way I could do this alone.

♥ and Hugs

Valerie

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