as a son, my heart is literally breaking into pieces

marc24
marc24 Member Posts: 92
edited March 2014 in Colorectal Cancer #1
today i called my mom and she told me that she felt pain as if she was ready to go...so i rushed home and asked if 911 is necessary. She said it isnt, but i know my mom and she is just really afraid that it might be it so she said no. I got home and my dad was there and my mom was there too but very very weak and she said that her pain radiated throughout her body...bascially the vicodin is working but not as much as before, now she really has pain after 3-4 hrs..i can tell she is trying but her body just cant resond anymore. I cant believe im gonna ask this but how do you cope with this if it ever gets to the end point. I feel so bad and broken inside and i have no other outlet but here now. Its only been 4 months since she was diagnosed, yet i feel like the end is near. I Dont want to be the sad news around this forum because i do see alot of NED stories and other topics where people look for hope....but frankly im breaking down and i just wished i had the damn disease because i can see my mom like this. My work is suffering, my own life is suffering, and i dunno how to fix myself anymore...im notmally a happy go lucky guy, but im a shell of myself.

Please is there other treatments that my mom can take or any other medicine other than hydrocodone to better fight her suffering? Also, how long can a person stop chemo and not suffer even more for not getting any treatments because she has been off for a month now and im really getting mad at the oncologist/nurses that keep postponing moving and making mistakes....im soo broken

Comments

  • nudgie
    nudgie Member Posts: 1,478 Member
    Breath
    Take a few deep breaths and let out slowly. Has your mom finished her chemo treatments or were the treatments given not working? Have you gotten second and third opinions about her case / condition? Has anyone spoken with her care team (primary doc and onoc dr)?

    Believe it or not, just being there for your mom helps out more than you will ever imagne, speaking as a mother. Be supportive, understanding and shower her with love and tell her you love you every day. This means more to a mom than anything else.

    For yourself. Do what makes YOU HAPPY to relax and relieve the stress. For me it is working out with weights and doing cardio. For others it is listening to music, reading a good book, doing a crossword puzzle, etc.

    Caregiver roles and patient roles are so different. I was the patient and my husband was the caregiver and I swear his stress level was higher than mine. I was a big baby throughout the whole journey and I made sure I told my doctors that too.

    Please keep us posted on you and your family and remember we are always here for you and your family for support, comfort, guidance, laughs, and mostly to listen.
  • VickiCO
    VickiCO Member Posts: 917
    Our hearts break for you
    "because she has been off for a month now and im really getting mad at the oncologist/nurses that keep postponing moving and making mistakes"

    Marc, can you not get another opinion? If you don't like the care she is receiving, or the response from the doctor's office, find a new doctor right away.

    When my pain was too much for Vicodin, I was put on Fentanyl patches, and those were increased as needed. Ask the doctor about it, if it's appropriate for her, etc.

    Hang in there sweetie, it's so hard to watch something this horrendous with your loved one.

    Many hugs, Vicki
  • sheri22
    sheri22 Member Posts: 273
    Marc
    I have to agree with Vicki I would definantly be looking for another Dr and take time out for yourself that will help you to stay strong to help your mom thru this
    some DRS just arent as careing as others I am lucky my DR and his nurses are great
    so there are decent Drs out there just keep looking

    prayers with your mom and you

    Sheri22
  • lesvanb
    lesvanb Member Posts: 905
    sheri22 said:

    Marc
    I have to agree with Vicki I would definantly be looking for another Dr and take time out for yourself that will help you to stay strong to help your mom thru this
    some DRS just arent as careing as others I am lucky my DR and his nurses are great
    so there are decent Drs out there just keep looking

    prayers with your mom and you

    Sheri22

    Hugs for you and your mom
    I agree with comments already written regarding getting a second opnion and then taking care of yourself too. We come into this life alone and leave alone. However the joy and love we share with each other, and in the company with each other in the meantime, as you are with your mom and the rest of your family, is a rare and precious gift.

    Leslie
  • krystle singer
    krystle singer Member Posts: 108
    Broken heart
    I watched my father struggle with pancreatic cancer back in 1973. I wish I had some answers for you. The pain your mom is experiencing goes through you, too. Now that I have had and maybe still have is harder on those who love me, than on me. No, I can't help medically but I will pray as hard as I can for all of your family. I know the sadness and that helpless feeling. In the meantime, love her as you have been. Love and prayers and care do help the person suffering. How I wish we could give you the answer that would take away the pain.

    Hugs,
    Sandi
  • punch_vj
    punch_vj Member Posts: 88
    I'm a caretaker too, and I
    I'm a caretaker too, and I understand the sense of anguish and helplessness that occassionally overwhelms us all. I can only add my voice to the wise posted comments already suggested here: breathe, pray, seek 2nd/3rd opinions with other docs, ask questions/demand answers, if possible call to schedule an appt with oncs/mom/dad for a family info session so that you have the best understanding of what txs she's having, the txs plan,etc.

    Help your mom be empowered to exspect and recieve better pain control than what she's getting now. How is her nutrition, since you mentioned she's weak, ask the nurse's/docs about nutritional guidance to help her stamina.

    Secondly, and this is sometimes the hard part to do, take time and care for yourself, follow the kind rec's from the folks posting here. Your mom and family WILL come through the other side of this.
  • changing2
    changing2 Member Posts: 118
    pain management
    Hi,
    So sorry for all you're going through. Hope this helps. First your mom is on a short acting pain medication. She probably needs something for long acting like the Fenatnyl patch mentioned or MS Contin or Oxycontin. Long acting drugs will keep a level amount of pain relief in her system 24/7. It can be increased or decreased as needed by MD. She can also take the short acting if she has some "break through pain" but your mom certainly sounds like she's suffering with the spikes day in and out. Better to keep something in her system. Second, you need some support and we're happy you're here but you may want to consider additional support. Check and see if there is a "Gilda's Club" near you ...it has numerous activities and support for patients and thier families.
    These are just my suggestions. I do hope you'll revieve them with her and her MD. I agree on second opinions but first you need the pain under control and many of us also have an anti anxiety or antidepressant...helps clear the head for making decisions and enjoying life. Certainly will hold you up in prayer. Keep us posted! Mannie
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    *hugs*
    Marc,

    I'm so sorry for you and what you're experiencing right now. It's so hard to watch the pain of someone you love!

    My question is this-if this really is the end for your mom, could you call in hospice care? They could do so much to manage your mom's pain. If I were you, I'd try to get an appointment to chat with her doctor and determine her status.

    If you feel uncertain about this doctor, seeing someone else would certainly be in order.

    I'll be praying for you.

    *hugs*

    Gail
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    Sorry
    Marc,
    I don't know what to tell you other than what's been suggested. I know that for myself, I would rather have this disease than one of my son's yet I know it's hard to see a parent in pain or slowly go. I lost my Dad almost 20 years ago after he suffered a stroke about 12 years before that. It was slow and painful to experience. My Mom had been his caregiver so it was rough on her. I'm pretty sure that your Mom would not let you trade places with her. Yes, there is a lot of NED stories here, sometimes while they are great to read for those who have reached that stage those of us who haven't reached NED may find them bittersweet. I know I do at times. Life isn't easy, always pleasant, or fair nor does it last forever.
    You could look into other care options as suggested and see if they can manage her pain better. I used the pain patch mentioned in a post and it was very helpful for me.
    -phil
  • marc24
    marc24 Member Posts: 92
    thanks everyone...im very overwhelmed with your responses
    I think having some time for myself is going to help me focus my energy...I just feel extremely guilty going out. So today to relieve some stress I went to a dodger game then at around 9 my dad called and said she had to take my mom to the ER this time they actually went, but again the pain subsided and my mom felt bettet, I guess the trip to er was due to extreme pain but mostly for precaution reasons...I am stuck an a game trying to get my mind out, but then this happens so I feel 10x guilty for not being with her.....so I'm back to square one. I will try to take care of myself more since today I also almost took a prolong leave of absence which means no money but I thought better that I might need to work and just alott more time after to spend time with her...as for the medicine, yes I will def sugges the longer term drug since hydrocone is having lesser and lesser benefits..so now I'm walking home to get to my car and drive home as quickly as possible...and as for our onc...turns out he was sick and was out, but I still feel like its taking forever...I hope I have better news by tomorrow...and I'm happy I have 2 days with her fulltime during weekend...also what should I do with my job...I work in a cutthroat work environment and leave of absence during tough times in economy usually means I will lose my spot and lose my career...its difficult to explain but i was wondering if you guys have thoughts on what I can do..
  • Julie 44
    Julie 44 Member Posts: 476 Member
    marc24 said:

    thanks everyone...im very overwhelmed with your responses
    I think having some time for myself is going to help me focus my energy...I just feel extremely guilty going out. So today to relieve some stress I went to a dodger game then at around 9 my dad called and said she had to take my mom to the ER this time they actually went, but again the pain subsided and my mom felt bettet, I guess the trip to er was due to extreme pain but mostly for precaution reasons...I am stuck an a game trying to get my mind out, but then this happens so I feel 10x guilty for not being with her.....so I'm back to square one. I will try to take care of myself more since today I also almost took a prolong leave of absence which means no money but I thought better that I might need to work and just alott more time after to spend time with her...as for the medicine, yes I will def sugges the longer term drug since hydrocone is having lesser and lesser benefits..so now I'm walking home to get to my car and drive home as quickly as possible...and as for our onc...turns out he was sick and was out, but I still feel like its taking forever...I hope I have better news by tomorrow...and I'm happy I have 2 days with her fulltime during weekend...also what should I do with my job...I work in a cutthroat work environment and leave of absence during tough times in economy usually means I will lose my spot and lose my career...its difficult to explain but i was wondering if you guys have thoughts on what I can do..

    Taking a leave
    Marc,
    When I got my cancer in 9/08 I was on a leave of absence.As I understand it that once you have it approved by your boss they can not fire you..You may not come back to the same job but they have to have a job for you...Check into it because it sounds like you need to do this not only for Mom but for yourself....But on the other hand going to work everyday keeps your mind busy..Can you visit Mom every night after work??? I would sit down and have a long talk with myself and figure out the best thing for you...Do what you can and stop with the guilt game..It doesn't do you ANY good..It can wind up making you sick too...Just do what you can and be there for her when you can....Mom understand you have a life too...I am sure she doesn't want you to give it up because of her..Being a Mom myself you just want to see your kids and for them to be happy..She wouldn't want you to get sick over her..Talk to her and tell her you love her everyday...Mom will be happy for that..My prayers are with you and your family...................JULIE
  • dorookie
    dorookie Member Posts: 1,731 Member
    marc24 said:

    thanks everyone...im very overwhelmed with your responses
    I think having some time for myself is going to help me focus my energy...I just feel extremely guilty going out. So today to relieve some stress I went to a dodger game then at around 9 my dad called and said she had to take my mom to the ER this time they actually went, but again the pain subsided and my mom felt bettet, I guess the trip to er was due to extreme pain but mostly for precaution reasons...I am stuck an a game trying to get my mind out, but then this happens so I feel 10x guilty for not being with her.....so I'm back to square one. I will try to take care of myself more since today I also almost took a prolong leave of absence which means no money but I thought better that I might need to work and just alott more time after to spend time with her...as for the medicine, yes I will def sugges the longer term drug since hydrocone is having lesser and lesser benefits..so now I'm walking home to get to my car and drive home as quickly as possible...and as for our onc...turns out he was sick and was out, but I still feel like its taking forever...I hope I have better news by tomorrow...and I'm happy I have 2 days with her fulltime during weekend...also what should I do with my job...I work in a cutthroat work environment and leave of absence during tough times in economy usually means I will lose my spot and lose my career...its difficult to explain but i was wondering if you guys have thoughts on what I can do..

    A lot of questions
    Marc,

    I think you have to ask yourself a lot of questions concerning your job. Are you married, do you have kids, whats the market for your job if you were to lose this one, do you like your job? Do a list of pros and cons, no one can tell you what you need to do except you. like Julie said I dont think your mom would want you giving up or throwing away a career. Does your boss know whats going on? Or is he just a butt head boss? I wish I had answers for you, but only you possess them.

    Take a deep breath, close your eyes, relax, and you might find some peace and find out what your heart of hearts tell ya. As a parent as well, I second what julie said, I wouldnt want my child worrying crazy about me, just a phone call or drop by to say I love you would mean alot to me.

    good luck and God Bless my prayers are with you and your family..

    Beth
  • eric38
    eric38 Member Posts: 583
    PhillieG said:

    Sorry
    Marc,
    I don't know what to tell you other than what's been suggested. I know that for myself, I would rather have this disease than one of my son's yet I know it's hard to see a parent in pain or slowly go. I lost my Dad almost 20 years ago after he suffered a stroke about 12 years before that. It was slow and painful to experience. My Mom had been his caregiver so it was rough on her. I'm pretty sure that your Mom would not let you trade places with her. Yes, there is a lot of NED stories here, sometimes while they are great to read for those who have reached that stage those of us who haven't reached NED may find them bittersweet. I know I do at times. Life isn't easy, always pleasant, or fair nor does it last forever.
    You could look into other care options as suggested and see if they can manage her pain better. I used the pain patch mentioned in a post and it was very helpful for me.
    -phil

    Phil
    You might not have reached NED yet but you have fought this like a champ and are a survivor. You have also managed to be an inspiration and help to others.

    Eric
  • eric38
    eric38 Member Posts: 583
    dorookie said:

    A lot of questions
    Marc,

    I think you have to ask yourself a lot of questions concerning your job. Are you married, do you have kids, whats the market for your job if you were to lose this one, do you like your job? Do a list of pros and cons, no one can tell you what you need to do except you. like Julie said I dont think your mom would want you giving up or throwing away a career. Does your boss know whats going on? Or is he just a butt head boss? I wish I had answers for you, but only you possess them.

    Take a deep breath, close your eyes, relax, and you might find some peace and find out what your heart of hearts tell ya. As a parent as well, I second what julie said, I wouldnt want my child worrying crazy about me, just a phone call or drop by to say I love you would mean alot to me.

    good luck and God Bless my prayers are with you and your family..

    Beth

    Marc
    Marc - I`ll never know what exactly how you feel but I empathize. I would rather go through this myself than to have to watch a family member do it. I`m more worried about my family being happy and I`m sure your Mom feels the same way.

    Eric
  • changing2
    changing2 Member Posts: 118
    marc24 said:

    thanks everyone...im very overwhelmed with your responses
    I think having some time for myself is going to help me focus my energy...I just feel extremely guilty going out. So today to relieve some stress I went to a dodger game then at around 9 my dad called and said she had to take my mom to the ER this time they actually went, but again the pain subsided and my mom felt bettet, I guess the trip to er was due to extreme pain but mostly for precaution reasons...I am stuck an a game trying to get my mind out, but then this happens so I feel 10x guilty for not being with her.....so I'm back to square one. I will try to take care of myself more since today I also almost took a prolong leave of absence which means no money but I thought better that I might need to work and just alott more time after to spend time with her...as for the medicine, yes I will def sugges the longer term drug since hydrocone is having lesser and lesser benefits..so now I'm walking home to get to my car and drive home as quickly as possible...and as for our onc...turns out he was sick and was out, but I still feel like its taking forever...I hope I have better news by tomorrow...and I'm happy I have 2 days with her fulltime during weekend...also what should I do with my job...I work in a cutthroat work environment and leave of absence during tough times in economy usually means I will lose my spot and lose my career...its difficult to explain but i was wondering if you guys have thoughts on what I can do..

    Family Leave Act
    Hi again:) You might want to check the "Family Leave Act for your State. I believe there are some guidelines that can protect your job but not sure of all the details. I live in NJ and as of this month you can actually recieve state benefits if you qualify for the Family Leave Act...I believe NJ goes through the temporary State Disability and you need to qualify for that as well. My wife is looking onto it next week as she's my caregiver. Hope this helps. Thoughts and prayers for you all, Mannie
  • marc24
    marc24 Member Posts: 92
    thanks again for advice...question about PERCOSET pain reliever
    So i got some good advice as well, someone told me before i act on something, make sure to stop and think...me taking a leave of absence is a great idea and eventually i might do it, but i also know that my mom is the time of person that is proud of me. Im only 2 yrs fresh off college, my stepdad has the insurance but i primarily help them on everything financially, or at least i try so me putting my paycheck on risk could be difficult after a few months...and yes i can see my mom everynight, albiet later..i just worry about food and someone to take care of her on a daily basis....what im planning is take it day by day and just return to normalcy since i think i function better when i am not dealin with this solely, it helps me when i have something else to focus on even for a few hrs...so i might take a leave of absence, but not right now. Also, my job depends on owning projects and when u get behind, although u are right, they will never fire u for this reason, the economy has been soo terrible that they have laid off alot of people over march and just last week so im trying to keep my job as best as i can. I do know that HR cares but they can only care so much...this is what i feel about my job, they will help u, but at a certain point, they will not hence my hesitation with my career decisions.


    An update with my mom, she was sent to ER last friday with pain, she felt better turns out even when she got there but went in for precautionary reasons...she waas tested, her blood, cat scan, etc... but around 1230am she had a nervous breakdown and had a shock, not sure how to explain it, but she was losing her breathe and had severe pain on her chest, good thing we where there already wit a room sooo turns out she did have a shock because she also has high blood pressure...but overall she ended up calming down..but for a good 10 minutes, i thought she was gonna leave me and my stepdad. Afterwards she felt better and better and was released around 5:00am. She is home now doing well but just sleeping A TON....she was given another pain medicine called PERCOSET aside from her HYDROCODONE. The doc stated that its a stronger form so take it, not with the other pain med, but for something more sever.....the CAT SCAN results werent good, since 5 months have went by, the cancer is still in her liver and before its littered all over her liver, the biggest is like 3.3cm. The doc said it looks as if it grew to bout 4-5cm so thats terrible news...but my mom had been having pain left side of the abdomen so the doc was concerned if the cancer has spread to the spleen,...but fortunately, the cancer didnt spread there nor to any of her bones...and he did say that the colorectal cancer isnt really a concern anymore meaning it was helped by the chemo... so now

    i feel like its a day to day issue, right now my mom feels about 75%, really weak but she can do things like shower and some cooking, its kinda nice because its been a few days of just worrying about her pain. I feel that it helped her hear from the doc her status about her liver since we havent gotten any for about a month. So she can take the fact that the liver mets are getting somewhat worse but thats more news but i dunno how severe 3.3 to 5 cm is, it seems very severe, but i'll take the good news with the bad which is no concern with her colorectal.

    Thanks again for the support and i continue to go here because of you people. I know some/most of u are loveones and most are also survivors / people who still deal with this so i appreciate that u guys help me since mentally its been very tough...but i will take it day by day and try to be with my mom every night as i get off at around 6 or 7...the leave of absence will still be at a pause since to be honest everytime i throw this idea, half kidding or not, my mom will always go "marc sooo what are u gonna do then, just stare at me 24/7 at home??? u cant cook, etc...go to work!" hahahaah she gets a kick of this idea. Im just happy that the last two days was very productive for her, she was more mobile and she is eating just a little more compared to the last two weeks or so...thanks for the support and i KNOW my mom will get through this.
  • sharpy102
    sharpy102 Member Posts: 368 Member
    stay focused...
    @Marc: I don't know if you remember me, or not. I was also taking care of my mom..as much as I could. For you right now, I know it's hard, but to find another doctor, or ask other medicines. I don't know Vicodin at all, we didn't have that for mom.
    We went into this order which I will list, you can print and ask your doc about them:
    Algopyrin (just a natural pain killer)
    Rubophen (same thing)
    Movalis
    Tramadol
    Durogesic patch (Fentanyl patch- morphine derivative)--> they have different dosages such: 25, 50, 75, 100ug/h. You can go pretty far with that, we used 400 by the end and everyday, not 72 hours as it is at the beginning
    Sevredol (different dosages as well, at every 4 hours- also morphine)
    Morphine iv.

    I cannot say that you'll do fine when going through this, as you will not. I've gone through it, and still crying every night. It's been a month she left me, and her birthday would be just today, and I feel very very depressed. In my mom's case, she didn't get chemo as they said no need for it anymore. No one was willing to give her chemo, or do surgery. My last fight with the doctors were in April, when one of them told me out of the clear sky that she has 2 months, nothing can be done. This was on the 21st of April. He was right: mom left on the 22nd of June. Hang on, Marc! Ask your doctor about the medicines I listed...maybe they are totally different than this "vicodin" or maybe this vicodin you are mentioning is actually similar to one of the medicines I listed...I am European, so we might have different names, but they might have the same components.
    I wish you strength, and your mom a bearable pain! My email address s.h.a.r.p.y.1.0.2. at yahoo and the end is "com". Of course, there are no dots at all in the nick just as my nick here, but I'm afraid CSN will take off my post if I write my email address out in a normal way. :) Email me, please! I want to help you, at least give ideas on medicines and stuff. Of course, I cannot help fully, as I couldn't help to my mom either...:( I pretty much failed at that...and I hope she is not mad at me, and she knows I was trying my best though.
    Take care, Marc!
    Sophie

    ps: just edit this as I forgot one medicine she also had (although wrote it to you via email): she took Meloxicam before Movalis. (docs say these are very similar medicines though)