It Was Hard Watching Him Die

[Spika]

Lately, I haven't been able to get the memories of my dad's illness out of my head. He died of cancer on Aug. 5, 2011. 10 months before that is when they found the very large tumor in his liver. It had metastised from his colon. About a year before they found the tumor in his liver is when his treament for colon cancer ended. The doctors always told him he would be fine. They said over and over, "You are young, so you will be fine." If I had a dollar for every time they said that...

They said it so much, in fact, that I don't think my dad realized how serious it was. I don't think my mom did either. When they found his colon cancer they had said that the chemo was only for a "precaution". Reality became apparent when they found the tumor that took up half of his liver a year later. But then I remember the doctor who operated on my dad when he had surgery for colon cancer. He told us that he saw a small nodule on my dad's liver but didn't know what it was. After that, nothing was done. And now I find myself always asking, "why?"

Why didn't they do more to figure out what that nodule on my dad's liver was 2 years ago? It is common knowledge for doctors that colon cancer can frequently metastisize to the liver. So why was nothing done? Even if it was just to inform my dad, "Hey, colon cancer often can spread to the liver so it's probably a small tumor. Let's take care of it now." ...I know that it isn't easy for anyone to confront their worst fear (my dad's was dying young... he was only 49) but if someone gives you the option to confront that fear and push it back wouldn't you take it? Who would just ignore it. So why was nothing more done?

I know these questions don't help me. I know I will never have an answer to these questions. But time isn't making these questions disappear; time has only given me more questions. I just can't help but wonder that maybe if just one thing was done different... maybe it wouldn't have come to this.

One of the memories that keeps shadowing me lately is the weeks and months before my dad went into the hospital. I didn't realize what I was watching, until hospice handed me one of those books on what to expect when someone is dying. I felt like I had gotten that booklet many months too late. No one told me that my dad was dying, and I didn't get that book until he only had 3 to 5 days left. But when I read the book, everything that was happening to him for months before, started to make sense. If I would have known, or if anyone would have known what he was going through then maybe we would have done things differently.

I don't think that my dad even knew what was happening to him months and weeks leading up to his death. I remember those days, but no one had any clue about what to do. He still went to work up until about a month before he died. I remember. He became so thin, he became weak and out of it. He still went to work but he always looked like he was in so much pain. He sort of leaned over and shuffled his feet. But it was the way he became so withdrawn that made me the most worried. I would try to talk to him and he would drift off to sleep. My mom told me this happened with her as well. But we didn't know what to do. His doctor never gave us advice.

The day he went into the hospital for the first time was so strange. I went in to talk to him and he was worse than usual. Oddly enough, I went to talk to him because I was worried and I wanted to inspire him to try harder to get better. As I told him how much he meant to me he had this very faraway look to his eye. He kept dosing off when I spoke, but when I started to cry is when I realized how bad he had become. I cried but he gave no response. I knew my mom had been talking about him acting this way for quite some time. But she didn't seem to think anything was wrong. So, first I went to calm myself down before I told my mom that I thought he needed to be taken to the hospital. By the time I got back, she was getting him ready to take to the emergency room. It is so confusing for me to think of now. Because he had become so withdrawn, I didn't know when he was worse than usual. My mom had told me instances with her that he would dose off or have a very far away look in his eye. So I didn't realize that his behavior that day was worse than usual, which is why I decided to collect my nerves before telling her that something had to be done. I mean really what difference could have minutes brought. But it is just the idea that I had no idea what to do makes me feel so guilty. I should not have let him distance himself so far from me... maybe then I would have noticed.

Anyway, I remember thinking during the months before he died that he might die. I remember thinking that it was very possible. But no matter how much I thought about it, I realize that nothing prepared me for it. I say all the time how surprising it was for me that he died and I still feel that way, even though I knew there was a chance at some point. People like hospice can tell you what to expect or what will happen, but it didn't prepare me for the hurt of watching him die those last few days and not being able to do anything about it. Nothing prepared me for that, my painful memories, my guilt, my questions, or most of all, his absense. I miss him so much.

[Babypod]

I am so sorry for your loss. It is so hard to see someone you love - someone who was once so strong - kind of wither away. My Grandmother didn't die of cancer - but old the last two years old age, blindness, and deafness took this person who was amazing and strong and made her scared of everything and physically weak.

I totally understand what you are saying about the medical community - and you are right - they should have been following that nodule on his liver - making sure it wasn't growing. Just keeping an eye on it.

My biggest suggestion is this - try not to focus on the end, nothing you do at this point can change things (I know - that is a lot easier said then done) - remember your dad in your prime. Remember those little memories - the ones that bring you joy. Do things to keep him in your life. Plant a tree for him - something like that.

Again - I am so sorry for your loss - I wish there is more I could give to help. It is hard - I know.

Angel

[niamh]

hi Spika,

I'm so sorry for all the whys and questions you have now, I can relate to that. My Dad passed suddenly when in hospital and I've been so angry with the hospital for their lack of monitoring, always wondering what if,what if. It was the last thing we were expecting to lose him when he's was just in for a simple standard procedure.

My Dad's doctor was a family friend and I did ask him the what ifs and he just told me there was no point in going down that road. While I know he did this out of care etc, at the same time it angered me, I wanted the answers and I still do but I know there is not a doctor in the country will actually disagree with they way things were handled.

I did go to a lawyer and had things checked out to see if we had a case against the hospital. More than anything I needed to do it for me, I needed some more answers. However I was left with more questions after the fact and told there was no negligence by the hospital. But that was one person's "opinion". I could have gone further with it but through this process found out the autopsy actually missed some tests to prove the cause of the blockage that took my Dad's life (it was assumed it was his heart because he had a heart condition, I'm angry that assumptions were made and NOT PROVEN). So if I was to take it further, more information would be needed...........possibly more tests which would require exhumation. I knew I could not go through all of that & the time it would take so I just couldn't. Has that stopped the questions, absolutely not. Those questions are just a part of me now. Some days they still raise their ugly heads and everything flies through my mind, other days they are just there under the covers but I don't think they will ever go away.

I think regardless of how we lose somebody we have questions, we have the whys, what ifs and for me I want to blame somebody, I want somebody to be at fault...... I think it's because I don't have any other explanation for why my Dad's not here because I don't really know the bigger picture of what life is all about, what death really is so at least being able to "blame" somebody brings some tiny sense to it all that it's "their fault" I no longer have my Dad in this world.

I have a hard time when I hear of other people including my Dad's brother, going into hospital for simple procedures and LEAVING hospital again, always wondering why not my Dad. I don't think I will ever not feel the hospital was at fault and I will always wonder what if they had done a,b,c.

I know people say it "won't help", there's "no point in asking", "nothing can bring him back" .........BUT regardless you have these burning questions and there is nothing wrong with that . Although I ended up with more questions than answers I am still glad I went that step further because I did get a tiny bit more information on medically what exactly caused my Dad's heart to stop..........so for me it was worth it to even get 1 question answered, we have so many so if there is anything that you can do to even get 1 of them answered then I'd say go for it.

I've heard some people saying that going back to the hospital and talking to the doctors/nurses etc that sometimes they can get some more info, some more "clarity" (for what of a better word) on what happened.

I too have my regrets, sometimes guilt for not "doing more". These questions always become more prominent at certain anniversarys so I just gotta ride it out.

I had a very close friend lose her father and they were "expecting" it ........having read so many stories of people's experiences I don't think a human can ever truly "expect" it, I don't think anything can truly prepare you for the shock and the absence, the questions and so on.

Just know that you are not the only one who has all these unanswered questions.

sending you love and ((hugs))

Niamh

[Spika]

Thank you for your kind replies, advice, and caring words. I'm sorry that you both can relate to me. But at least we can take comfort in knowing that we are not alone.

It's true that my mom and I have been very upset that it looks like my dad fell through the cracks. We thought about hiring an attorney as well. But a very close friend (with experience in this topic) advised us not to, saying that a large part of a doctor’s career is covering their actions to protect themselves from malpractice lawsuits. Lawsuits are common against doctors, which makes sense being that they work so close with life or death. That’s not to say that doctors don’t malpractice because they do - but they make it very difficult to win a lawsuit against them.

The doctor my dad saw was known at the time as one of the best oncologists in the state. He tried to get a second opinion but the other doctors told him he was in good hands with his doctor. Doctors stick together like peas and carrots, so it is very hard to find another one who would testify against a fellow doctor, as you know naimh. But that is unfortunate because you need that medical professional to testify in order to show that that particular doctor's care was below standards. Well, you dealt with it firsthand, so I don’t need to go on but basically our friend said that we could try but we would most likely only spend thousands of dollars for nothing.

Plus there is the chance that the doctor wasn’t negligent. Like I said in my last post - if it was you, and you knew about a nodule in your liver, wouldn’t you try to deal with it? I think anyone would. Unfortunately with my dad, based on his behavior, I just don’t know if he would try to ignore it or deal with it. There are so many things he didn’t do until it was too late. I always used to say that his only vice was a poor diet and too much soda. Even when he found out that he had cancer, he didn’t try to change. And then after he finished his chemo treatment for colon cancer he missed 5 months worth of appointments to have his chemotherapy port removed. I know that he sometimes ignored problems.

But I don’t want to think that my dad ignored his health out of fear. I don’t want to think that he made the mistake that cost him his life. I know it is possible but I won’t accept that. My mom knows only as much as me too... She only knew what he told her.

In the final prognosis on my dad the doctor wrote that he had an “altered mental state”. I would like to find the doctor that wrote this and ask him, who wouldn’t have an altered mental state if they were dying young? It’s not something a person below 60 generally accepts. But I feel like there is definitely something I don’t know. Maybe one day when I am more brave I will find him and ask him. I don’t know… maybe I will just accept not knowing and carry that with me like you said, naimh. Maybe it is best if I do not know. I just wish he wasn’t gone. Today is my mom’s birthday, it is so strange to go on about it without him here.

[niamh]

thanks Spika and you're SO welcome.

I could have written so much of what you wrote. Yep doctors do have to protect themselves and I think it's definitely seriously draining if you take a case. When we went to lawyer first I had made the decision that this was just a little more investigation, I didn't think one way or another whether I wanted a lawsuit. However I see it so often in the news here when people do take cases and win them, it's always 6,7,8,9 years after and I just can't imagine the trauma that would bring. I also noticed that with any monetary payouts ...........more is always paid for any type of damage that for someone who has died. Of course I know it's horrendous if someone needs lifetime care etc but I feel like death isn't as big a deal in lawsuits and I find that hard to accept knowing the reality.

When we were starting it I just kept asking my Dad to let the right thing happen, whichever way that was going to go.

You know I can relate to when you talk about the possibility that your Dad ignored something. I get mad with my Dad at times. When he was in hospital they would have if he had chest pain (YES, that was there way of "checking" his heart") and he kept saying no. But I know my Dad well and unless he was literally bent over unable to move in pain he would always say he was fine. So I do sometimes wonder if maybe he just didn't want them going at his heart/chest etc on top on the kindney stone pain he had. Or that he just had the attitude " I'll be fine" because he always thought like that, almost not taking things seriously ? Sometimes I think my Dad maybe thought he was invincible :-)

I've never dealt directly with any family dying from cancer Spika but I have friends who've lost family & friends and they have talked about how the person can change especially towards the end, I've just heard them talking how different the person had become, sometimes completely personailty changes, but it was nothing the person was truly conscious of, it was related to the cancer.

It's hard having that feeling like there's something you don't know, I feel that too. But as you say Spika if you don't feel like asking the doctors today that's ok, if the day comes where you feel like you can, I'm sure it would not be an issue and you would be able to find the doctor and talk to them.

I hope your Mom's birthday went ok, those days are so extra hard and I can't really celebrate them anymore, they are not happy days, in fact I find them extra sad and lonely because it's almost even more in my face of what's missing.

lots of ((hugs)) to you,

Niamh

[Daughter2010]

Spika,

My dad passed away from stomach cancer two years ago. I often find myself remembering that last week with him. Me being far away, receiving call from my mom saying doctors gave out any hope and that the cancer had spread to his intestines, hence making it more difficult to treat because he had lost so much weight. There are times I wonder if the doctors did not tell us the whole story because a month before that my father appeared to be ok, but had trouble with food circulating. In that last month, he lost so much weight, everything he would eat would either go right through him or come back out. 8 months prior to that he had his stomach removed and a part of me thinks something just didn't seal right after surgery, or the doctors missed something they could have spotted. There are many questions but also the weeks after my dad passed, mom, my brothers and I decided any investigation on the matter wouldn't bring him back,it would be more draining for us and would make the grieving process more difficult. On the other hand, I know the doctors did all they could to get him well during treatment, it is just that I get the feeling that something was missed.

Again, that is not going to bring my father back, things happen the way they did and know I just have to adapt to this change. It has been 2 years and I grieve for my dad, I have a hard time expressing all that I felt during that last week with him. Seeing him cling to life, we didn't tell him what the doctors said, my father wanted to get well. How would you tell someone that? We didn't have the heart for it. However, deep down my father knew his time was near, and it was hard to see him trying to be strong for us and seeing life was coming out of him day after day. That is why it's hard for me to relate what went on. Even at one point during that week, when my dad and I were alone, dad said he wanted to get better and would seek treatment somewhere else if there was not much to do in the hospital, but also told me that his time was near and to take care of mom. How do you respond to that? I supported him in his desire to get better and promised him that if anything happened to him I would take care of mom.

All of the emotions felts those times have remained inside me.

I talk about them with my family from time to time, except that moment dad and I shared which is meant to be kept as a conversation between he and I.

I can't believe it will be two years tomorrow and yes if you ask me, cancer does affect people including their personality. My father at times seemed to be on the other side than here. I know angels were waiting for him to assist him to the other side. He presented the signs of looking up to the ceiling as if staring at something out there. He passed away after we told him it was ok to go, that everything would be ok.

Lately, I haven't experienced the raw emotions grief brings, I guess now those emotions have settled and reality kicks in, this is the second year,and there will be a third, fourth and so on.

Going through this experience with my father and seeing other cancer patients in that hospital showed me how fragile life is and what many emotions and situations a human being can experience through that sickness.

Spika, a big hug for you, be gentle with yourself, these things happen and we don't have all the answers to life. Do what feels right for you. If you feel the need to vent, please feel free to drop a line.

Hang in there,

-L

[Spika]

One of the biggest reasons I think my mom didn't get lawyers involved was just that, how grieving would be made so much more difficult. Dealing with my dad’s possessions and various accounts is hard enough for her already. Me, I can’t even work up enough bravery to take home some of my dad’s things that my mom wants me to have. I have a Wii that my dad gave me last Christmas that I put in my closet, and every time I catch a glimpse of it I start crying.

My dad was like yours too naimh, in the sense that he always said he was fine. While I deeply admire the strength that my dad had to let on like nothing much was bothering him, I also wish he wouldn’t have acted so tough because he put up with a lot of pain because of that. Even about 8 days before he passed, I went on a walk with him around the nurses station in the hospital and I remember someone he had met walking up to him. My dad gave him a sturdy handshake even though he was holding onto my shoulder for balance. The man said, “How are you feeling?” My dad put on a smile and said, “I’m doing better, feeling better.” The man smiled and said how great that was and my dad and I continued our walk. Even though I knew he was feeling much worse, I was still amazed by his positive attitude. But I think with him, he didn’t know when to stop acting like everything was ok and admit when something was too much for him.

Daughter2010, you said you can’t believe it’s been two years. I can’t believe it will be three months on Nov. 5th. I feel like time moves on, but I don’t. That is so very hard, as I’m sure you know. I feel like people forget and sometimes I feel like I am so alone in missing him, or alone in remembering him, etc. Those emotions, no matter how many times I express them, they don’t go away. They are always there. They aren’t as uncontrollable as they were the first month. Sometimes I can go for a day or two in perfect control, but then other days those emotions just come out how and when they see fit.

It feels so good to talk about it, rather than keeping it inside.

Oh, and naimh, I think my mom had an ok time on her birthday. I was so embarrassed when I ended up crying on her shoulder, but at least at dinner we had a few laughs. Dreading my birthday next and then the holidays.

[pmpupdamike]

Spika.I am so sorry for your loss. I can sense the pain in your words, so much so, that I too, felt that pang in my chest. My father passed away on the 28th of Sept, this year. It is still raw, and I feel the same as you, although perhaps from a different vantage point. I don't deal with pain or grief well. I over analyze everything. I tried to research my way out of sadness, and here I am, with a "killer" encyclopedic knowledge on metastatic prostate cancer. My father's medical team, were always so impressed, but I never felt the same towards them, I always thought there was more, that could be done. My dad's body gave out, and I am left, a book worm with a broken heart.

[jodo]

Hi Everyone,

Today would have been my Dad's Birthday,(this is the second one without him) I have cried all day, and my eyes are raw. I want to join this discussion about Medical negligence, etc. (It is something that haunts me everyday - the fact that the doctors did something that caused my Dad's death) I just don't have the energy to write tonight. I just wanted to say for now that I can totally relate to everything all of you have said regarding this. I needed this tonight -(to read these things that you all have written), I don't feel so alone.

I'm sending all of you a big hug, and will write more soon,

Jodi

[pmpupdamike]

Hi Jodo. I am so so sorry. I recently joined this forum and while it has been my observation, that it is not as active as I would like it to be, there are very sincere replys, to many posts. I hope to hear your story, and I wish you well, during this difficult time.