Father is dying....

[Nixee]

I haven't lost him yet, but I don't know how to handle this anyways. It suddenly feels way too inevitable and real to me after talking to my family today, and I just can't stop crying.

 

My dad has brain cancer.

 

About 2-3 weeks ago he finished his chemo and radiation therapy, but instead of feeling better after the treatments stopping, he feels worse. He has no quality of life at all..... he is constantly sick, throwing up. He is fatigued. Some days he can do little more than sit or lie around, and he's dizzy and drugged out of his mind.

 

Because of this, they moved up his next scheduled MRI and found out that the treatments had basically failed, and the tumor had grown.

 

The only "up" side to this is that it means he now may qualify for a second-line treatment that has shown to be a miracle drug in many patients with the same type of tumors. The extreme downside is that with all the side effects he is going through, he is fearful of ANY drug, and rightly so. The treatments have a slim chance of buying him time, but that time so far has been absolute misery.... and it is painful for us to see him like this.

 

I live each day... each week... just hoping that when I talk to him, or to my mom, that I will hear good news... that he is feeling better, having a good day.

 

Today was not one of those days. Today we faced reality. Treatment buys time... but dad doesn't feel well. The time will likely come that hospice is the choice opted for, and all you can do is prepare to say goodbye.

 

I don't know how to do that. I've had people close to me pass on before. When it happens suddenly.... it hurts horribly, but there is nothing to dread like this... no build up.

When it is cancer.... you just feel robbed... angry... and you want the pain and suffering to go away.

 

And with my dad... I don't really think I have enough words to express how important he is to me. Role model, father, friend, and often nemesis all at once ... because I'm exactly like him. Losing him has been one of my biggest fears for longer than I can say.

 

I talk to him often, and I try to remain as strong as I can for him... but often I don't know what to say. He knows I love him, but I still tell him anyways. He feels guilty for being a burden on his family... on my mom.... I wish he didn't feel that way. Things are hard for him to talk about over and over I think though, so often he just asks what is going on with me, and we chat.

 

I don't know what else I can do. I live far away from home right now, though I'll be home in a month, at least to visit... and we'll see from there.

 

I guess I just needed to get some of this out...

 

If anyone has lost someone in a similar way... has any stories to share or helpful advice on how to cope or help a loved one in my dad's position, I'd appreciate it...

[Hopelives]

I am so sorry.

 

Since he knows he is sick, and you know he is sick, treat him as you normally would. If you hear a funny story, and you would have told him in the past, tell him now. If something makes you mad, and you would have told him in the past, tell him now.

 

If he cries, it's okay to cry with him. This IS painful and hard and incomprehensible. This is not fun or joyous. BUT do not forget to live and be happy and enjoy THOSE moments too. They will be there if you focus on hope and life, despite the ... fear.

 

When you go for a visit, be prepared. REALLY prepared. He may not look like what you remember anymore. His face may have become gaunt, and if the tumor is affecting his neural pathways, his face might have started to sink a bit.

 

Again, treat him as you usually would as much as possible.

 

Palliative care is an interest of mine as I approach med school. How to best help those around my patient - the loving family. I am a firm believer that what helps the family, ALWAYS helps the patient.

 

I'm so sorry you are going through this. My own father is 79 and healthy. I truly thank God every day for him.

[Nixee]

Hope.... thank you.

 

I am really trying to treat him like normal... like ...dad. I guess it is hard since he is weak lately. Part of "normal" for us is joking around, funny/clever stories and dialogue... but also debates and arguments over nothing haha... I fully admit... no arguing lately. But I'm ok with that.

 

He did joke with me around Halloween that he wouldn't need much of a costume because of how silly he looks after losing patches of hair from treatment... I know he will look different, and yeah.. it will be strange, and hard. Mostly it will be hard to see him so tired and weak. The last time I saw him was when he visited me in August. He actually had the tumor then, but was not diagnosed. He was acting funny though... headachey, tired, stumbling a bit... and I was worried right away. He was diagnosed a week after returning home.

 

Palliative care and hospice care.... Unfortunately, it has still been a little less than a year since my family watched my aunt die from breast cancer as well. Having care available to help my aunt... to help my family... it is so very important, and it takes a huge and strong heart, and I'm sure it'll make you a strong doctor.

 

Thank you for your response.

[AmandaB]

I am so sorry tohear about this. My dad died when I was 17 of cerosis of the liver and we all saw it coming. My grandfather died of cancer. It is scary but act normal when you do see them. Laugh! Enjoy the time you still do have with them. Thats a big thing, dont waste the time you do still have with them. Enjoy it even though it is sad.

In the end you will have no choice but to go through all the emotions of grief. It just happens. You do feel robbed but it will get better and you will learn from it.

[Scorpion Fury]

I'm sorry Nixee. I lost my dad a few years ago and it was horrible. I still miss him every day. We were really close.

 

But, my dad was sick for a while before he died, and I know it's so hard to see them like this and let it build up, but truthfully now that I look back, I am thankful that I got to say my goodbyes, instead of just suddenly having him taken from me with no warning. I was able to prepare myself somewhat (not that anyone is ever REALLY prepared for the death of someone they love), but I got to make sure I spent time with him, said the things that mattered, etc.

 

No one will ever replace him and I will always miss him, but I am at a good place now, where I can actually remember him and laugh without crying, and I can appreciate the time I had with him, and know that he is no longer suffering.

[greensleeves]

Nixee, I'm so sorry about your Dad.

 

I lost my own father when I was only 21 and it was very sudden. I'd give anything to have been able to spend just a little more time with him to tell him how much me meant to me.

 

This must be so difficult for you. Try to treat every remaining day, hour or minute that you're able to spend with him as a gift, because it really is. I agree to some extent with acting normal around him, but it's also okay to talk to him about his fears, his thoughts on death or the afterlife, his regrets and highlights of his life or any other direction that he may take. Try not to feel uncomfortable about getting into some very deep and spiritual conversations with him...it can be very healing for both of you. Watching a loved one slowly die is the most difficult thing most of us will ever go through, but what you do have is the opportunity to tell him how much you love him, how he's impacted your life and how important he is to you.

[Nixee]

Thank you all for your support and words.

 

I agree very much with cherishing each moment and conversation that we have.... I guess that is the mindset I have been in ever since we got the diagnosis. It is still hard though.... somehow, no matter what.... I guess it just feels like it'll never be enough, you know?

 

I also have thought about talking more in depth about what he is going through....and how he feels about what he is facing, but there is a lot of fear. There is a lot of quiet understanding between us on some things, and he gets emotional pretty easily...so it is hard for me to push things beyond just telling him that I love him. I guess we'll see. Figuring out how to say things to him is hard at times.

[Crazyaboutdogs]

I am so sorry about this. It is rough to watch your loved one go through this. Is there any kind of support group you can tap into. Perhaps there is a cancer centre near you that has support groups for people dealing with impending loss and bereavement.

[Nixee]

I haven't really looked into a support group to be honest.... my schedule with school and work keeps me very very busy most of the time, and to be honest that has been my (admittedly poor) coping mechanism. And now, with the semester ending soon, I'll go home and visit at the holidays.

 

My mom has said she is seeing a therapist though, which is good. I may look into this... thank you for suggesting it.

[_Asti_]

Oh how I feel your pain.

My mother is currently on her death bed, dying of cancer.

 

I've mourned her loss since her diagnosis last Christmas. She hasn't been the same since she started her treatments...she hasn't been my Mother. I've already lost her in the sense of her personality, and now losing her physically is killing me inside.

 

Big hugs to you.

 

Its been awful thing to watch my Mother die. To watch her wither away to bones.

To hold her close, support her to breathe as she tries to catch her breath, push aside the upset when she's hallucinating and doesn't know who I am...it doesn't get easier.

 

The strength is there..somewhere. Some how. I don't know how I get through it. I dread thinking of another week of seeing her like this, but its one day at a time...thats all you can do.

[Nixee]

Asti.... I'm so so sorry to hear about your mother. It is very hard

 

Right now, every bit of good news is thrilling. More bad news, heart-crushing.

 

Last night I got the good news that my dad's upped steroid dosage is appearing to help with his edema, and his nausea has gone down. This makes me feel so much better. Over the past week his life had been miserable... sick constantly, headaches...nothing but lay around and feel miserable with nothing to do about it.

 

And yet the doctors only want to give more meds, more treatment.

 

Yet even with that, he isn't himself. Each time I talk to him, he laments not being able to do what he once could. He is dizzy, disoriented, spacey. I will see him in less than a month, and I know he'll look different.

 

Hugs to you too Asti... I know what you are going through, and the strength is hard to find, but it keeps coming in waves when you need it. Thanks for posting.

[mushmouth]

I just want to reach out and tell you how sorry I am for you to experience this. However, you sounds incredibly brave for posting your situation considering the grief you are living through.

 

I found this board during a heartbreak. I am now visiting it because the mother of an old girlfriend also came down with brain cancer and was just admitted to a hospice.

 

I think the beauty of this board is to know that as anonymous as everyone is, there is so much love out there to give. We feel tremendous loss when a loved one passes away. Clearly, they brought joy. Hopefully, we can embrace that joy and spread it to others as we remember how important human connection is.

 

Again, I am so sorry for your pain and your father's pain. A day will come where there will be joy. Continue to be brave and continue to open your heart as good things will find there way to it.

[Nixee]

I think the beauty of this board is to know that as anonymous as everyone is, there is so much love out there to give.

 

I agree completely.....

 

Thank you so much for your support, and for sharing your story.

 

It is a roller coaster ride. The ups...they aren't really ups though... just small peaks of hope - hope for strength, and good days... just good days that come one day at a time.

 

But you are definitely right... there is a ton of love and support out there I have found. And when you go through something like this, you learn just exactly how much you can love.

[mushmouth]

Do you mind if I ask what else you did to find love and support besides this board and being in contact with friends? I saw someone post a thread suggesting people post a photo/picture which represented their feelings. I thought that was a worthy exercise. Right now, I'm just encouraging her to be around friends, to cry, to eat and to exercise outdoors to feel the fresh air.

 

When I was dealing with heartbreak, I was able to channel my anger toward being a better person. I set goals and felt great when I accomplished them. Clearly, that's because I was dealing with self esteem issues. But the loss of a loved one seems so different. I am amazed at anyone who has the courage to get out of bed and to face the world let alone know that you are going to see a parent suffer in pain.

 

My ex-girlfrind said when she isn't crying, she is numb or emotionally exhausted from watching her mother live with physical pain. It hurts me to know how much emotional pain she and her whole family is in. Sadly, we all know we can only offer love and support since we are powerless to how the brain cancer will play out.

 

thank you again for sharing anything you can and have already.

[Nixee]

To be honest... I'm really scared sometimes that more and more waves of pain will keep hitting me harder and harder, and that eventually I won't know how to handle it

 

For now though, I actually lead an extremely busy and stressful life. I don't like it, but.... it is a mixed blessing I guess, because I HAVE to keep going, and so it keeps me from breaking down.

 

I work about 30 hours a week, and I go to school. My classes.... they are very hard too. Between constant schoolwork, studying and work stress.... or stress about other things - the future, my potential non-existent love life- I end up distracted enough that I'm not freaking out 24/7.

 

As for love and support.... my schedule doesn't let me do much else... I talk with friends I have here, and back home and elsewhere when I can. I cry. I'm an artist, and if I had the time I would love to be creating.... Sadly, all my time right now is devoted to work and study.

 

When emotionally devastating things happen, you can go into what my mom has always described to me as "survival mode". I guess I feel I've been in survival mode for a very long time now.

 

To some extent, you are right about the setting goals bit. It is still true, and I still do it. I still long to be a better person, and accomplish things. I still want to make my dad proud, which is why I still go on with my future plans for as long as I can until the time comes when I may have to return home for a time to support my family (and that is a very difficult decision on my shoulders, too). But the impending loss ... it is a factor that just leaves you feeling so helpless. You want to know you will overcome... that you can figure out how to solve it, or heal, or something. But you can't... and you won't. All you do is hope for good days and take things one step at a time.

[Nixee]

I know things are starting to hit me more and more now.... I can feel it. I felt so tired and lazy last night. When I went to bed I just cried... just couldn't stop crying.

 

I feel so helpless.

 

His doctor wanted to do surgery again, but he refused. He doesn't want to go through surgery again, even though he recovered well the first time. He is losing cognitive function. I think that is because of the radiation, and I hope it will improve with more time. He starts Avastin soon, which MAY do good things for him. Best case scenario... it may buy him another year.

 

If it doesn't work... he may have only another couple months. We just can't know.

 

I feel like I can't go on with my life. My own future plans mean being away from home... school, internships, travel, hard work, getting into grad school. This is a high pressure year for me. I feel like I have to cancel it all. Be with him, with my family. I feel like I need to. But.. I feel like if I do... I may never get another shot to follow my dreams. The grad program I want to get into only takes apps once every two years. If I call things off and miss it.... I'm just getting so old for this....

 

And I feel so selfish to even think like that. I hate this. I hate all of this.

[iridethedirt]

I am so sorry to hear what you are going through, I know all too well how hard losing a parent is. My father passed away this past august. He was in renal failure for a second time as a result of polycistic kidney disease. He had a transplanted kidney, but after about ten years the disease attacked his new kidney and within a couple years his body could no longer fight. He passed in the hospital surrounded by his family. He was very sick the last six months of his life and spent the last nearly 3 months hospitalized, the decline at the very end was rapid.

My wife and I had our wedding planned for this past October, it was wonderful, but we missed my father immensly but we felt him there in spirit. I went from hoping my father would be able to walk onto the beach at our wedding ceremony on his own when we first got engaged, his legs were very weak from so much time in the hospital beds and so walking at that point was difficult. My hope turned to that he would be able to be there at all, and then my hope was that he would live long enough to see pictures and video... But he passed a little more than 2 months before my wedding. Going through the loss of my father while trying to plan the hapiest day of my life was so hard, the emotional roller coaster has been absolutly horrible. It is now December and I still think of him all the time miss him terribly and find myself crying pretty often.

That is my story in a nutshell... The things I can tell you are that you are lucky to be able to say goodbye, so many people do not get that chance... Nothing makes it easier really but being with your family, and having people around who you can talk to is helpful as well. I wish your family the best, and encourage you to spend as much time with your dad as you can... I regret not visiting my dad more often, even the two to three times a week feels like it was not enough. Go through some old family photo albums with your dad, talk to him about his favorite memories of your childhood, vacations, all his best memories. I wish you and your family the best.

[Nixee]

Thank you for sharing your story...

 

I'm so sorry that you lost your father... and as you were planning your wedding too

 

I know that feeling. I'm not even engaged, but already I've had those thoughts often: That my dad won't have grandkids... that he won't ever walk me down the aisle. Sometimes I already hate myself for not working harder to make sure he had those things already. I feel like a lousy kid in some ways. .... even though.. I know it is not true. It really isn't. You just can't help but feel it... because there just isn't enough time.

 

I know that I am lucky to get what time we have. Yet it is torture at the same time. My brother... my father's oldest child... he was taken from us suddenly, as the result of a car accident. In that case... there was no chance to say goodbyes, or "I love you"s, to prepare. Yet at the same time.. I didn't have to feel helpless and watch him decline for months... never knowing. It is two kinds of awful. I can't believe my family is facing losing another member.

I hope I can figure out how to best spend time with my dad...

[Ellie2006]

Nixee, i have no words ... they all sound so ... empty, y'know?

i am so sorry for what your family is going through, what you're father's braving through.

(hugs)

[Nixee]

Thanks Ellie... *hugs*... Just takes a couple kind words of support to help sometimes

[kunming]

My father is dying from cancer also. He was diagnosed with colon cancer in Feb 2008. Did the chemo, radiation, and had surgery. Finished surgery in August 2008 and felt good. We thought cancer was gone, but tests in May 2009 showed the cancer had spread to his lungs and bones, now he's stage 4. Hospice is involved, comes out 2 days a week.

 

I've lost grandparents before, but that's pretty much expected, right? You don't expect to lose your father at age 65. He had been healthy his whole life, walked 5 miles a day during his lunch break, and rode in long-distance bike races annually. His illness has caught my family by surprise.

 

He fought the cancer for awhile, but the past few weeks he has started giving up and is getting depressed. Yesterday he told me he wished he had AIDS instead because there are more effective meds for AIDS patients...I didn't know how to respond to that.

 

My daughters are 3 and 6. He is crazy about them, and it just eats me up that he won't be there to watch them grow up, to go to their dance recitals, watch them graduate, get married.

 

I am trying so hard to be strong for my daughters' sakes. I'm trying to make this a nice Christmas for them, I've decorated the house and the Christmas tree, but all I want to do is hide under the covers and sob my heart out.

 

I miss my dad, even though he is still alive. I'd give anything for his suffering to end.

 

Nixee, I am so sorry to hear about your father. I wish I had words of comfort or encouragement to offer you.

[Nixee]

Thank you for posting your story kunming... I'm so sorry to hear about your father.

 

I know what you mean about just not expecting it. Me... well, I never really had grandparents... but yeah, I get it. Losing anyone is horrible, and so hard... but my parents... they both had just hit retirement. My dad is 63. He's already survived prostate cancer. You begin to look around and wonder how this could happen. Nothing is like you imagined it.... growing old and happy.... with grandkids, family gatherings. Instead it is doctors visits, tests, medications... and pain and worry.

 

I imagine it is so very hard to hear things like the comment your dad said about wishing he had AIDS instead. The thing is... I think you just have to understand that it comes from feeling so helpless. Whether or not it is true that he could wish that (I'd doubt it.. I'd wish neither on anyone)... it is simply a helpless feeling, as I'm sure you understand so well being his family. I know I feel it every day. There is NO cure, and treatments offer minimal management at best.

 

It is wonderful that you are trying to be strong for your family though... for your dad, and for your daughters. I have no children yet... but I try to be strong for my dad, and for my mom.. and for myself. But just like you... I often want to curl up.

 

And I also feel myself missing my dad even though he's still here. He's already not the same... memory fading, cognitive function impaired, and hope... well he'd describe himself as a realist, but just about anyone who talks to him may view him as a defeatist or a bit depressed. I try to gently urge him to keep his chin up... strong mind and heart, strong body.. but at the same time it almost feels insulting. So often I find myself lost for words... I'm great at rationalizing so many things in life, in comforting so many people.. but this? This is one thing that I haven't figured out. I can't tell him that it'll be ok... because it won't. I can't tell him that he'll get better. Yet I can't lose it either.

 

Right now I just hope each day will be better and less painful than the day before.

[Nixee]

Just an update....

 

I spent Christmas and New Year's with my family at home in California, and it was wonderful. So many friends stopping by and staying with us.... so many people bringing food or helping out, and our annual party we throw for new year's eve... it was great.

 

My dad was/is very different. Aged. Confused. He would seem to have up days and down days. Up times and down times within those days. Difficulty walking at times, dressing himself...and with many little things. Yet he's still him.

 

A few days after I left he had his next MRI to let us know if his latest and last line treatment, Avastin, was working. After getting only bad news for what seemed like forever... this time we actually got good news- it appeared his tumor had shrunk. The Avastin appeared to be working. For a brief moment my head was swimming through happy possibilities - dad starting to feel better, stronger.... maybe getting the chance to spend some real quality time with him after all...you know... "before"...

 

Yet, despite the good news, his function has continued to decline. He is weaker and has been falling down, sleeping more, and eating less.

 

Based on his symptoms, and my mother's observations, a couple days ago his doctor gave the hospice referral.

 

Yesterday... my mother called me and told me she thought it was time for me to make arrangements to be home.

Withdraw from school.... go on leave from work... be there with my family... watch my father slip away....

[hosswhispra]

Yesterday... my mother called me and told me she thought it was time for me to make arrangements to be home.

Withdraw from school.... go on leave from work... be there with my family... watch my father slip away....

 

Hi Nixee,

 

I agree with your mom. It's the toughest thing to watch someone you love slip away-but being there for your family is the best.

 

My dad died after a 16 month battle with prostate cancer in Nov. 2004. My mom took care of him for most of that time. I was there to help her and be with my family. Now, just 5 years later, it is round number #2...my mom was just diagnosed with terminal cancer right after New Years and is on hospice. I am at home with a leave from work. My sister had started school in the fall semester and is now on a leave of absence from school.

 

Work/School will always be there.

[Nixee]

Hi Nixee,

 

I agree with your mom. It's the toughest thing to watch someone you love slip away-but being there for your family is the best.

 

My dad died after a 16 month battle with prostate cancer in Nov. 2004. My mom took care of him for most of that time. I was there to help her and be with my family. Now, just 5 years later, it is round number #2...my mom was just diagnosed with terminal cancer right after New Years and is on hospice. I am at home with a leave from work. My sister had started school in the fall semester and is now on a leave of absence from school.

 

Work/School will always be there.

 

Thank you hosswhispra....

 

I am so very sorry you are going through this for the second time...

 

I hate all the feelings I am having. Grief, of course.... fear, anxiety... but selfish stuff too. Yes school and work will be there... but dropping out this semester also means that I will not be ready to apply to the grad program I was planning to in the fall, and they only take in applicants every two years. My whole future may change by leaving school now. And of course that is selfish, and I hate even thinking about it..... but it is a sad truth.

 

But without question.... my family is most important to me. What is happening.... it is what is most important and what I have been given to deal with. It just feels like it changes everything in my life in a million ways..... and maybe its the dumb and obvious thing to say... but... I'm scared.