• Hi, I'm Dana from NJ. I'm just looking to talk to someone who can relate to what I'm feeling and help me process everything.

    Asked by Danarenee27 on Saturday, February 2, 2013

    Hi, I'm Dana from NJ. I'm just looking to talk to someone who can relate to what I'm feeling and help me process everything.

    My father was diagnosed with stage 4 pancreatic cancer about a month ago. I live in NJ and my parents and brother now all live in NC. When I first found out about my fathers diagnosis, I immediately went down to NC to be with my family. The 4 of us spent 2 weeks together, going to 2 different hospitals and numerous doctor appointments, trying to find the right doctor and decide on
    the best treatment for my dad. During this time, we all grew so much closer as a family, and we shared a lot of tears and a lot of heartfelt moments. Unfortunately, my job is in NJ and I had no choice but to return home. Since I've been home, I've been feeling so disconnected from my family. Although I speak to them every day and FaceTime with my dad, I feel so much guilt for being away from them during this time. I'm also sad and frustrated that I can't be there when he goes for chemo, or be there at the dinner table with them etc. I feel like I'm missing the precious little time that I have left with him.

    8 Answers from the Community

    8 answers
    • FreeBird's Avatar
      FreeBird

      Hello. My dad also has a stage 4 pancreatic cancer. I'm his caregiver. It is a lot to process in your mind and emotions. It must be very difficult being so far away. My heart goes out to your family for what you're going through. What were you looking to find out?

      about 4 years ago
    • FreeBird's Avatar
      FreeBird

      I recommend contacting the Pancreatic Cancer Action Network, http://pancan.org/section_facing_pancreatic_cancer/oneonone_support/ to ask if they are aware of resources to help deal with the emotional difficulties of being far away from family. They were always helpful to me, with offering places to turn for support. I ended up not using them, but there are things out there.

      I think as far as your father's concerned, he must be proud that you're on your own two feet and taking care of yourself. The best thing you can do for him is to show that you're taking care of you, and that you're just a phone call away if your family needs anything, because I'm sure he is just as concerned about you all, maybe even more so. Maybe you can arrange some weekend trips. I have other siblings who can only visit on the weekend, and one lives too far away to make the trip frequently. Of course the rest of the family would like to be closer too. My dad has a couple of brothers, who could only visit once. Those were quite emotional and difficult visits, because we all realize that's the last time they will see each other.

      about 4 years ago
    • FreeBird's Avatar
      FreeBird

      The Pancreatic Cancer Action Network also has a database of doctors with a lot of experience in this type of cancer, if that's helpful for a second opinion.

      about 4 years ago
    • Danarenee27's Avatar
      Danarenee27

      Thank you for that info, I will definitely check it out. I'm sorry to hear that your father is sick as well. I'm trying to stay strong and think positively, but I know that time isn't on our side. Thankfully, I have the type of job where I can work from home if I need to, so I am definitely planning on getting down there every other weekend or so. It just doesn't seem real yet...my father is a big man, 5'11" 275 lbs...he looks the same as he's always looked, so it hasn't really sunk in for me yet how sick he really is. He started chemo this past Monday and then had to be rushed to the hospital the next night because he thought he was having a heart attack. He wound up having a blocked artery and had to have a stent put it to open it up. He is home now and doing okay, doctor said it had nothing to do with the chemo. So far, the only side effects he's had is just a little diarrhea and feeling tired. How long has your father been on chemo, and how is he responding? They have my father on this combination of 3 drugs: folfurinox and 2 others... they said they're giving him the most
      toxic regimen because they think he can handle it, considering his size and the physical condition he seems to be in. I'm praying that he will keep responding well to the treatment. Before he started chemo his CA 19-9 levels were over 3,000, two weeks later they were over 7,000! He goes for blood tests next week.

      about 4 years ago
    • FreeBird's Avatar
      FreeBird

      Wow, he has been through a lot already. Dad was on Gemzar (gemcitabine) monotherapy, and had 7 chemo infusions before it failed. He was diagnosed last June. It started to work for a short time. But with that, it usually eventually stops working for people. That has been the standard of care since the late 90's. If your body can take it, they might give you the FOLFIRINOX combination, that still seems to be the best with regard to prolonging life. But it's rougher on the body. I hope your dad does well with it, to reach his goals.

      Dad decided not to continue with treatment, because he has a better quality of life without it, and the available options for him would not make much of a difference. He made the decision that it's better to have good time now, rather than to suffer now and not add very much to the end. So we went with Hospice care this month. They have done a great job so far. They took his pain from a 7 down to 2-4 with extended-release morphine three times a day. He still has very good days. The best thing I can say is take one day at a time, and make the most of it. You never know. They told dad in June that he had six months to live. The Hospice doctor said he looks like he's still doing relatively well.

      His CA19-9 levels were relatively low compared to your dad. In the hundreds. I have seen people with them twice as high as your dad.

      about 4 years ago
    • FreeBird's Avatar
      FreeBird

      This is one of the better information resources on treatment for pancreatic cancer http://www.cancer.gov/cancertopics/types/pancreatic

      The Lustgarten Foundation in New York has some helpful information on their website http://www.lustgarten.org/informationandsupportservices

      about 4 years ago
    • joyce's Avatar
      joyce

      One resource you may try for one one one support is Immerman Angels. They provide support for cancer patients and caregivers. Support can be on the phone, email, in-person, or however you want it. I don't have their number but you can google it.

      I am so sorry for your father's diagnosis. My husband is a pancreatic cancer survivor of 16 months. It's a difficult road.

      about 4 years ago
    • katiecb's Avatar
      katiecb

      My mother was diagnosed with stage 4 pancreatic cancer in November, She lives in Nebraska and I live in Missouri. I understand exactly what you are going through. I will explain what I do, and hopefully it will help you some.
      I'm a teacher, so I have completely engulfed myself with things to fill my time. I come up with lessons that take hours to make up so I don't have free time. I have also talked openly to my mom about being away. She made it clear that she did not want me to give up what I worked so hard to achieve, but I also made her promise that she would tell me if she needs me, no job will keep me here if she calls on me.
      I have also started to focus on my health, which is super important when very stressed. I cook all my meals (takes time to go to store, get food, prepare it, and cook it), I go to the gym for an hour every day, no matter what, and I do something relaxing at least once a week. Here is KC we have had huge snow storms, and I have been off work. it has been super difficult because I have so much down time, and I would much rather be there with her.
      Talking about your feelings - even when its hard, or even when you feel like no one else wants it to be brought up is very important. I started talking to my friends more, I took them to dinner and said that I need there help, (this was hard), I also started attending church again - the support they give me is amazing.
      You must take care of yourself and be honest about your feelings and not afraid to talk to your dad about how you are feeling being away.
      my mom has made rules with all of us... "All questions need to be asked immediately, even if its 3am" "If you feel you need to be here I will not tell you no, and if I need you here I will tell you" "You must carry on with life, because I will beat this"

      almost 4 years ago

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