My heart is so very sad

melody36911
melody36911 Member Posts: 12
edited March 2014 in Colorectal Cancer #1
I began reading this site in November of 2004 when my father was diagnosed with colon cancer. His cancer was stage 3 when he was operated on and he went on chemo right away. He was on many regimens but the doctors could never get his cea count to decrease. It was only in March of this year when the doctors were able to see some enlarged lymph nodes behind his stomach. The doctors at his oncology center just kept telling him not to worry as there was plenty more drugs to try. This past Monday he was scheduled for more scans as he was feeling very unwell. He ended up cancelling these tests and going to his regular doctor that morning as he was so sick. His family practice doctor put him in the hospital for these tests. Well, his potassium level was at a near fatal level and it was determined that he was in mutiple organ failure. Also, his cancer was found to be widespread which involved the lungs and bones. At this point he was told that there was nothing more that any doctor could do and that going home would be best so that he could enjoy what was left of his life. He came home on Hospice on Wednesday and was so very glad to come home. He talked and talked all that day. He was really upset about not being told the extent of his cancer and being told by the doctors that there were many drugs left to try. By the next day, he was sleeping mostly all the time. The next day he was out of it and laboring some with his breathing. He passed away about 5:30 the next morning (Saturday). I am glad that he did not suffer and that he did not have to go through days and days of not being able to eat, breathe well, etc. I am so very sad that he did not have time at home off of the chemo so that he could enjoy feeling well. He always told his oncologist that when treatment was futile, he wanted to stop. He wanted to enjoy quality time. We now know that there was cancer in the lungs back in September of last year and he was not told. We know, because doctors compared his scans from before and spoke about the progression of the disease. My father never wanted anything hid from him. He always wanted the option of quitting chemo when enough was enough. He told his doctor that he did not want to be one of those people that took chemo one week and in the obituary the next. Since he came home we found out that another patient he befriended at this clinic was sent home on hospice. This patient also had no idea that his time was so near. His family is so very angry about the "false hope" that was given to their family. We are all beginning to believe that it is all about the money that is made from these treatments. I wish that my father could have known the truth and enjoyed the last couple of months of his life.

Comments

  • KathiM
    KathiM Member Posts: 8,028 Member
    Oh, melody...I am so sorry. Nov of 2004 was when I, too, was diagnosed.
    The only thought that I have is a little different than the money angle...some doctors have a very hard time admitting that it's time to give up. They have been trained, after all, to sustain life... I'm sorry that your dad had to pass feeling badly.
    He is not gone, just moved from in front of your eyes, to inside your heart, where he will live on forever.

    Hugs to you,
    Kathi
  • musiclover
    musiclover Member Posts: 242
    Melody, I am so, so sorry to hear of your loss. I wish there were something I could say to make it less hurtful. I also worry about my friend and what he's been told by his doctors. I have to get aggressive to get them to talk about his treatment and what is/will be happening.

    All I can tell you is your father was so lucky to have you to care for him. He seemed completely at peace when he was home for his last few days. You are in my prayers.
  • mindy10
    mindy10 Member Posts: 182 Member
    Melody, I know exactly how you feel. My dad had stage 4 and was told right along that his treatments where helping. Then in April he could not breath well and went into the hospital. Well his lung was filled with fulid. he knew he had tumors in his lungs but the dr's always said we are not worrying about those ones right now they are so small. Well they could not of been to small if they caused the lungs to fill up. He was also sent home and told to get stronger and they would start another regimine. Well he suffered for 3 weeks and went back to the dr. Again the dr said go home now for 3 weeks and get better and we will start chemo again. well needless to say I knew he was not getting better and wanted to call Hospice in. He suffered unnecisarilly for 2 months before we called hospice because Dr's gave us false hope. He died 2 1/2 months after he came home from the hospital and he was in lots of pain in those months. If you want to email me and ever talk please do so. Mindy
  • alihamilton
    alihamilton Member Posts: 347 Member
    I am so sorry to hear about your father, melody. I agree with KathiM that most doctors just want to keep going but they should have informed your father and given him choices. This attitude takes away our control over decisions we make regarding our bodies and our illnesses and is not right. I am about to see my oncologist regarding treatment for lymphoma, and I intend to let him know from the start that I want to be fully informed so that I can decide what I want to do and what I may not want to do.

    I hope your heart finds healing, knowing your father is now at peace. As you say, it is good he did not have to suffer too long.

    My prayers are with you.

    Ali
  • taunya
    taunya Member Posts: 390 Member
    Melody,
    I am very sorry to hear about the loss of your father. I am sorry too that you are having regrets about his treatment. Hang in there.
    Taunya
  • KathiM
    KathiM Member Posts: 8,028 Member

    I am so sorry to hear about your father, melody. I agree with KathiM that most doctors just want to keep going but they should have informed your father and given him choices. This attitude takes away our control over decisions we make regarding our bodies and our illnesses and is not right. I am about to see my oncologist regarding treatment for lymphoma, and I intend to let him know from the start that I want to be fully informed so that I can decide what I want to do and what I may not want to do.

    I hope your heart finds healing, knowing your father is now at peace. As you say, it is good he did not have to suffer too long.

    My prayers are with you.

    Ali

    Hey, Ali....don't just slip something like that in your message...

    Lymphoma???? You????? When????? Where????? How??????

    MAJOR hugs to you!!!!!!
    Kathi
  • jenalynet
    jenalynet Member Posts: 361 Member
    Melody,
    I am so sorry about the loss of your father, I will keep you and your family in my thoughts and prayers.Audrey.
  • spongebob
    spongebob Member Posts: 2,565 Member
    Melody -

    I am very sorry to hear about your dad. By the sounds of it, his demise was not long and drawn out and you can take comfort in knowing he's at peace now.

    Doctors - especially oncologists - have to walk such a fine line... they can't become too emotionally attached to their patients lest they be emotionally devistated on a routine basis when, despite their best efforts, they lose a patient. On the other hand, they can't be so cold and clinical that they don't appear to care about patient #12345. Could it be that your dad's team wanted so much for him to get through this that they allowed themselves to believe too much of a good thing? Sounds to me like his cancer was very fast growing and extremely aggressive - maybe it snuck up on his medical team.

    Dealt hand, though. What is important is to keep coming back to the fact that your dad is at peace now and you know that you and his medical team did everything they could for him, with the knowledge they had at the time.

    Be well.

    - SpongeBob
  • jsabol
    jsabol Member Posts: 1,145 Member
    Oh, ((((Melody))))),
    I'm sorry for your loss, and for the way your dad's onc let him and the family down. I certainly can't speak for your dad's onc, but you may, at some point in the future, want to give him some feedback. If he was witholding information about mets to the lungs, than that was not right.
    I lost my dad to this disease also. He was diagnosed with advanced stage 111, with multiple nodes, at age 82. He did well with the surgery and a year of chemo, then had a major recurrance one year after that when he was rushed to the hospital for a "rectal bleed". We then found out that his CT scan from 6 weeks earlier revealed extensive disease, but his onc NEVER READ the report. His office claimed that they never got a copy(!!) nor did they have a system in place to double check for reports. My dad had been told that "No news is good news" with the scan, and his onc would only call him if something was wrong! I could barely be civil with that doc at the hospital, but my dad loved him! (I have at least learned never to assume that my results are OK until I hear the specifics!) The recurrance involved colon, and mets to liver and lungs; he tried one round of chemo, but was so sick, he stopped, went on hospice and passed away 3 difficult months later.
    I imagine that your dad must have been feeling pretty awful to have been so sick and then pass so quickly. I'm sorry that he and you did not have the time to address his upcoming passing. Perhaps you should send a copy of your post to his onc? Allow yourself time to grieve; I hope you are soon able to remember the good times, and not this horrible experience surrounding his last days. My sympathy to you and yours
    Judy
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    Melody - I am so sorry to hear about your Dad. Losing a parent is very tough.

    I think you should let your father's oncologist know how you feel. Sending him your post would be very good - you don't have to be angry - in fact that would probably just make him close down defensively - but if you let him know in a calm way how you all felt, it may perhaps influence his interactions with a future patient.

    Take care,
    Betsy
  • kangatoo
    kangatoo Member Posts: 2,105 Member

    Melody - I am so sorry to hear about your Dad. Losing a parent is very tough.

    I think you should let your father's oncologist know how you feel. Sending him your post would be very good - you don't have to be angry - in fact that would probably just make him close down defensively - but if you let him know in a calm way how you all felt, it may perhaps influence his interactions with a future patient.

    Take care,
    Betsy

    Hello Melody. Having had my mother succumb to cancer I too know full well how devestating it can be. Although it may have been your fathers wish to enjoy some quality time I am sure that Spongebobs explanation carries some weight. Itmay well be that your father's cancer accelerated to quickly for the team attending him and caught them out. It is sad that he was not able to have that quality time but take heart that his suffering is over.
    Our sincerest sympathy, Ross and Jen
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    Dear Melody,

    I am very sorry for your loss. If it is of any consolation please know that your father is in much better place with God and is not suffering any more.

    I know it is very difficult to do but maybe you could try not to look back - what happened - happened. No matter what you do now you can not turn it back. So, for your own peace of mind please try to find peace in the Now and not in the past. The past is gone. Try to remember your father during all your life and what he has done for you and what he has meant for you. Your father will always be with you and one day you will meet again.

    May God bless his soul.

    Eleonora
  • cheer3
    cheer3 Member Posts: 105 Member
    I am so sorry for your loss and pain.
    You are in my Prayers.

    Blessings to you,
    Jean
  • afraidinindy
    afraidinindy Member Posts: 80
    I'm so sorry, Melody, to learn of your Father's passing. I don't know his age but I know from my own experience, no matter how old they are and how sick they've been, we are never ready to let go. But as several have said already, you can take peace in knowing that your Father is at rest and is no longer suffering. That is what helped me get through the passing of each of my parents. And it is so very true, looking back and going through the agonies of feeling let down by the doctors will do nothing to lessen your pain. However, if by chance you feel pursuing this with the doctors will perhaps help someone else in the future, then maybe it would be good to talk with the docs and explain your hurts from their negligence in being upfront with your Father. If not, it will probably help your healing to just let go of the past, remember your wonderful moments together and ask the Lord to heal your pain. You will be in my prayers.

    Lois
  • vinny3
    vinny3 Member Posts: 928 Member
    I'm so sorry to hear of your loss and like the others have said you may get some peace that he is no longer suffering. The doctors may have been trying to be optimistic and give the family hope but there is no reason for them not to be honest and give all the information. They can tell the patient how serious and concerned they are about the problem and that they will keep trying to help and defeat the beast. Tell them in a straightforward way as it may help them to be more honest in the future with other patients.
    ****
  • nanuk
    nanuk Member Posts: 1,358 Member
    There is so little we can say in the way of comfort when there is such a loss; I feel that death is the ultimate affirmation of life..another door has just opened, and only a chapter was closed. Your father has "graduated" to another level...celebrate this.
    Too many times I have seen the doctors hide the truth..it's not thier call; we are entitled to know what we want and ask to know, no more, no less..your doctor's should have respected your father's wishes. Best wishes, Bud
  • CAMaura
    CAMaura Member Posts: 719 Member
    I am so sorry for your loss. For this to come on so quickly for all you must have been devastating.
    Please cherish the time you did spend with your father and try not to think about the woulds and shoulds and coulds. All you really had were the choices that all of you made...And, you did your best with every option.
    Doctors are SO human...We are reminded of this with every mistake or mishap that occurs -- even just the unforseen coming our way.
    Try to take time to know that your father is still with you in some spiritual way and that he is only looking down with smiles and absolutely NO discomfort; at least that is my take on things...
    Only good thoughts coming your way - Maura
  • pink05
    pink05 Member Posts: 550
    I am so sorry to hear about your father. I am glad that he did not have to suffer long. I think it is horrible what happened with him and that his doctors never kept him informed of what was going on. I am so outraged at that. I hope that your family and the other family you mentioned take some sort of action against this facility so that they do not put anymore families through this again.

    God bless you and your family through this difficult time,

    -Lee-
  • Kanort
    Kanort Member Posts: 1,272 Member
    Dear Melody,

    I am so sad to read about your father's passing. I am sorry that his wishes weren't honored. I will be praying for you and your family.

    Hugs,

    Kay
  • janiemgold
    janiemgold Member Posts: 2
    Melody,

    I am sending you a huge hug for the loss of you Dad. I also lost my mother several years ago to lung cancer and I feel your disappointment toward the medical field. I had a great deal of anger after she passed away, but then I remembered the day she was diagnosed at UCLA medical center. She was so afraid of the pain the cancer would bring toward the end, and also the inability to breath (she had asthma also). Her cancer could not be operated on, so they focused on medicine that would give her a little more time. While in the hospital having a simple outpatient procedure done, she was washed with a solution she was allergic to. This was neglect on the staff, but I feel was God's gift to her. She never fully recovered from the reaction, and passed away 6 days later.

    Here is her answered prayer (though it took us a while to see this). She did not suffer in pain, nor did she require any breathing assistance, which she feared. She passed quietly with all of us present. Though we would have loved to have her many more years, I would not have wanted her to suffer the long effects lung cancer could have had. Mistakes, I am not sure about, but God's grace, I know for certain. My heartfelt sympathy for your family and friends, and the blessed assurance that you will again see him healthy and happy one day.

    Hugs, Janie