Looking for some support

[dotingdaughter1980]

My Dad, now 63, was diagnosed with Stage 3b lung cancer in April of 2007. He wasn't going to do any treatment, but as I am my parents' only child and was expecting my first baby that October Dad decided to do whatever he could to try to be there for the birth of my baby.

His cancer had spread to his lymph nodes so they decided not to remove the tumour, but he did a walloping round of chemo and radiation that summer. He had pneumonia when my son was born, but was able to meet him a few weeks later. We were really thrilled to have him with us (and quite well!) for Christmas too.

Spring of 2008 he started to have some problems with the dexterity in his right hand. Within days he had lost use of his entire arm, and then began to have tingling in his leg. Tests found the cancer spread to his brain, and he was put on steroids and then had radiation on his brain tumours. He completely recovered the use of his right side.

Since that time, he has had radiation on the brain tumours again, and the cancer has now spread to his other lung and he has had some skin cancer as well. All in all, he is generally well and everyone is amazed that he is still here - 3 years later!

Lately he's been sleeping a lot and he has become more and more confused in the last 6 months. He has very little energy and his appetite comes and goes. He vomits some days an has frequent headaches that he takes percocet for.

It's been a long road. I'm grateful that we've had so much time together and that we know we're losing him. So many people lose their loved ones in accidents and never get the chance to say goodbye.

I'm just not sure what to do, as I've just been SO sad lately. I feel like I can't function properly at work or in my personal relationships, and I don't know what to do about it. I've been very strong for this 3 years, but it seems to be catching up with me. I've looked for support groups in my area but there don't seem to be any.

Maybe it would help to know that someone out there understands....

[recce101]

Hi, welcome to the group. Yes, we definitely understand. We have an amazing group here, a mixture of patients and family members and others affected by lung cancer in some way. It sounds as if your dad has done well with the treatments, but maybe the brain mets have returned. Is he on any treatment currently, and do you know the specific type of lung cancer?

Your feelings are very normal, and I don't know that there's much you can do about it right now except take one day at a time. I hope some others who have been in your same exact situation can help more. Best wishes and Aloha,

Ned

[eric byrne]

Hi,

Glad you found us,welcome to LCSC.So sorry to hear your dads story,it must give him a great deal of comfort in having such a loving and caring daughter in his corner,I know everyone here can well understand the emotional turmoil you are going through,we all do at times carers and patients alike feel tired and drained,particularly careers having to bear the frustration of being on the sidelines and being unable to do more to help.Sharing your feelings with this group will provide you with the support you need.I have gained so much here sharing,reading others stories has given me such a lift I dont know how I would have managed otherwise.

What about you?I think it is important to take some time out for yourself,to think about looking after yourself better,seems to me from your description of yourself,you are slowly being overwhelmed by the stress of coping,that it is having an effect on your day to day life.You have done so well,why not contemplate some expert councilling advice,to help improving your emotional side,I think this could also add to the support you can provide for your family.Dont let a brick wall come up and hit you unexpectedly.

[Joppette]

Hi there,

Ah, been on both sides. Lost Mom to lung cancer, and then I got it. It's tougher (in my opinion) to be a caregiver. As a caregiver, we don't understand what our loved one is going through. And as we see a cringe of pain, or other reactions, our minds blow it up much bigger than it may be.

I understand your emotions about thinking about folks that lose a loved one in an accident with no chance to say goodbye. You get to love on him every day that he is here. Have you looked into Hospice care? He is only 63 so may not be eligible for Medicaid. My Mom was not, she was 62. But his own insurance may kick in whatever Hospice needs to take care of him. They can make sure his pain is under control, take care of the cost of the medications, and also provide you with the support you need as you go through this.

My heart goes out to you. It's such a tough thing to deal with. Try to help him be comfortable painwise, get some help with Hospice, and give him all the love you can. It will help both you and him. God bless.

Judy in MI

[dotingdaughter1980]

Thank you all for your support. We are in Ontario Canada so our healthcare coverage is incredible. Dad is doing very well at home, and my Mom is still working full time. I live about 2 hours away and visit as often as I can. I'm trying to get my mom to join a caregiver support group as she has admitted that it would help her. I can't seem to find anything in my area though. Your kind words and stories help, though, and I'm glad I've found you

I am just struggling as there hasn't been a very drastic change to his condition lately, but it seems to be affecting me all of a sudden. It is difficult to explain to people as they don't understand the change in my mood when there's been no change to his health.

He's tired and gets lots of headaches, but for the most part his symptoms seem to be from trying to wean himself off the steroids. I think he's decided to just stay on them now.

[Joppette]

Another thought, my brother volunteers for the hospital, and he goes to people's homes and provides respite. The caregiver can go and get some things done, or take a lunch, or whatever. The Respite person will read, or do light housekeeping, make a snack, and general just look after the individual. It's rewarding work for the volunteer, and gives the caregivers a much needed break.

Hang in there, we'll be here for you no matter what.

Judy in MI

[Nick C]

doting,

I think some of what you are feeling it grief. The change in your dad over the last 6 months isn't the dad you once had, and so I think you might miss that dad a bit. I know I felt this way with my mom.

But I felt lucky that mom and I actually grieved losing eachother a bit...because only she could really understand.

I'm sure there are a lot of folks here who understand the sadness you are feeling.

[New MissyK]

I'm so sorry you're having to deal with this, but am amazed at your continued courage and strength! You've been riding an emotional rollercoaster for 3 years...a break (as Katie suggested) would not be out of line after all that! I'm sure your dad is so incredibly proud of you!!

I remember when Mom was dealing with her brain mets and how terrified we were about what was happening to her. I also remember grieving the mom I used to have and learning all about the "new mom". We used a LOT of humor! We called it "playing charades" when she'd forget what word she was looking for, etc.

But it can be very frustrating and sad and lonely feeling...that's where we come in...to help support you when you're feeling those things. We're here, we'll listen, and it helps

Much love,

Missy

[jaminkw]

Welcome to the group. You've already gotten a number of posts from people I know have been caregivers. They do know where you are coming from. I'm a cancer survivor, not a caregiver, but even I experience the sudden downs associated with the thought of losing this battle. You and your father and your mother have been so strong but it's still a big question mark as to how long your father will be with you. Let yourself feel the feelings and then try to take a break from cancer as Katie suggests. My best advice as to how to handle friends and acquaintances, use your instincts. If you suspect (or know) the person isn't going to have a clue, keep it short and sweet. Share when you think the person can listen with some empathy.

Judy in KW

[HeatheraFucci]

I just want to start off by saying that I am here for you if you need to talk.

My dad is 65 years old and was just diagnoses with Stage IV NSCLC with mets to his brain, kidneys, bone and spine. He has opted out of chemo treatments at the present time and is doing Radiation treatments to prevent the mets in his brain from causing seizures, blindness and a decrease in motor function.

Everyday is a gift but everyday is also a struggle for me. I also have a hard time functioning at work and in my personal life. It seems that all I want to do is sleep and it takes everything I have to get out of bed in the morning and do the things that I have to do. My father tells me "Don't let this rule your life..." But how can I not when I know one day he isn't going to be there.

I completely know what you are going through and would love to chat with you.

[RandyW]

Remember yesterday, Cherish Today, and Pray for tomorrow!!