i Feel Lost Sometimes

dear allison , how nice of you to respond to janeen and I, yes I find it very comforting that I can speak to someone about things that have happened even though I have lost my husband and hopfully your father will have a much more favourable prognosis, It still helps my state of mind. I am sorry but what is NSCLC?
Janeen and I have been able to cope a little bit more, maybe just by being able to vent some frustration, anger, worry, or grief with anyone out there who will listen. please keep responding to either of us and maybe it could help you.
regards Debbie

Dear Janeen, Hello there how are you and your family going, have you read the message board there have been a couple of new ladies that have responded to us. It makes me so sad to think that there is so many people who are in pain physically and emotionally, and I know that it has been a while for me but the pain is just as fresh somedays as if it was yesterday, and then there are days that I say to myself that I can do this we will get through this we will get through another hurdle that seems to come up,.
I have just had an operation on my leg so I have not been able to walk or even sit upright in a chair for the last seven days but the bandages come off on monday and then I can have a shower after seven days (bet you could smell me from all the way across the world). My vacation with my son was very relaxing and my daughter had a great time on hers, my eldest daughter has moved back home a month ago as her two mates moved out and she couldn't afford the rent. So it is a bit crowded at the moment.
How is everything going with you, how is your husbands condition, has it stabilised or not? how is your daughter coping with the situation and do you think she can understand the reality. Are you yourself managing to look after your self I hope you can atleast give some small time of relaxation for you, it is very important not selfish as you need to store up as much strength as you can for the bad days. please let me know how you are,
until next we talk
Debbie

Debbie,

Thanks for the response. NSCLC is Non-Small Cell Lung Cancer. I am very sorry about your husband. We recently found out during my father's last round of tests, that he has a shadow on his liver. What's completely frustrating to me is that neither his oncologist, or his surgeon seem too concerned about it. Personally I think if he wasn't on Medicare, they would have sent him immediately back for further testing. As of now, we have to wait until February until they will do more tests. They said it could be anything, but what are the odds? Lung cancer is known for spreading to many other parts of the body, so I don't understand why they don't think it's serious. Especially because they did find cancer in some of his lymph nodes when they removed his lung. Aren't they supposed to be of the mind that the earlier you catch these things, the better? Okay - I do feel a bit better - sometimes I guess it does help to vent! Thanks for letting me bend your ear! I hope you are feeling better!

Allison

Hey Debbie,

I had no idea that you were scheduled to have surgery. I'm glad that you came out of it ok. I'm sure that you will be up and around really soon. I am also glad to hear that you all had a good time on your vacations. Things here have gotten much worse. Bob's condition is no better. In fact, he was in the hospital a couple of days ago and the doctors have now told us that because his nutritional feeding is causing his liver to fail. If his enzymes go higher, they will have to take him off the nutrition. If they take him off of the nutrition, he will starve to death as this is his only form of nutrition. Basically, with all that said, they have given him approx. 2 weeks to live. I was so shocked to hear that. Since then, I think I've been moving on auto-power. I have no idea what to do next. I know that the doctors haven't told him and I don't know how to. If you have any suggestions, please let me know.

dear janeen, I'm so,so, so, sorry to hear that things have gotten to this stage, even though we are suppose to be prepared, how can anyone be able to deal with the news and still get on with our regular living. there is nothing, I can say to alleviate any fear or anguish, that you both must be feeling. I can say that it is not up to you to tell bobby, his prognosis, the Drs, will do it and be able to answer any questions he and you may have. they also will speak to your daughter or at least get someone qualified to, if you feel it is to hard, and it is, I told my three children the news and it truly was the hardest, most heart breaking thing to do, i think they still hate me for being the one that told them. when they told me that john had only a few hours to live and to say anything we had to say to him now none of us could think of any thing to say we were so upset we couldn't speak without crying, even though he defied them and lasted for two days longer, he was unable to speak and in such a deep state of unconciousness, i like to think that he could still hear us talking around him because his wish was not to die alone and we all made sure that he was never alone, towards the last hour just his older son and i were with him, until i said you can go to sleep now , he was still trying to take a breath. I think he needed to be told it was alright for him to let go and he could stop fighting and rest. please don't think i'm being awful, but it was a great relief when it finally happened all the struggling, and hurt and not being able to help him anymore, the fact that he was now at peace and not being in excrutiating pain(his description) and the knowledge he did live a short but very loved life, something he said not everyone could lay claim to. there is no right or wrong feelings you have to do what is the best thing for you to be able to get through a hard time. i am here to hear you and to help you with any thing that i might be able to i have plenty of tissues and i am using them right now for me and for you.

until next time we speak
regards debbie

dear allison, how are you i hope you are doing o.k. i haven't been able to respond sooner as i have had surgury 30 october, but i have been having trouble with my leg they think i might have a small clot and now i have to go to the hospital to have injections to help dissapate the clot. anyway i'll be o.k. are you living at home with your father and being his carer or are you young, or dare i say it older? are you trying to find out as much information as you can about the illness and the secondary complications that will arise, later on. my husband was diagnosed with prostate cancer but he was found to late for much to be done for him, then he had secondary cancers throughout his whole body which over took him in march 06.
all i can say is to keep nagging the drs if they aren't seeming to be doing any thing medically for your dad they do forget that we can only think about our relatives and the pain they are going through. even if they say they are doing every thing they can, there is always something even if it is just pain relief. i think that we were looked after quite well and we have no medical cover and were just a medicare patient. any time you need to vent steam i understand as i still need to scream, many times i just start to shake and can only think of john, as if it was happening now and not months ago. hope to hear from you soon bye for now. debbie.

Debbie,

I just want you to know how much I have appreciated you're sharing you journey and experiences with your husband to me. Monday morning Bobby passed away. He was in the hospital in intensive care. I needed to leave to take Kiersten to school but told him that I would be right back. I left his friend there with him to see after him. I told him that I loved him and he told me he loved me too. I left to drop her off. On the way back to the hospital, I got a call that the doctors were trying to resusitate him. Unfortunately, it didn't work. Upon arriving at the hospital, they had already disconnected him from the tubes and cords and he just laid there peacefully. The pastoral care person was there in the room when I arrived and told me that he had no pain, his heart simply stopped beating. I told him that I really felt bad that I wasn't there with him. He explained to me that Bobby made a choice for me. He waited until I left to go because he didn't want me to go through seeing them try to revive him. After thinking about it, I could see him doing that. Bobby loved me enough that he didn't me to go through anymore pain and I love him so much more for that. So I do understand that sometimes you have to release people so that they can cross over. I guess by Bobby and I saying that we loved each other for the last time, that was all he needed. Funeral services have been planned for Saturday. I really hope I can make it through. Now it's my turn. I have tissues out for both you and me.

All my love,
Janeen

my dearest friend , janeen, I feel that we are close enough for me to call you this endearment, what can i say, there is nothing but true respect for any one going through this unbelievable pain as you both are now. it will be hard so don't try to do everything and be brave let yourself be helped by friends and family. i made the mistake of trying to do every thing for my self and it only seemed to hurt the ones who didn't know what else to do as they were hurting as much as my children and i were.
if you still want to correspond through this message service i would love to be able to keep incontact with you, i will check it every few days. take a deep breath and know that he is at peace, i didn't like hearing that saying because it didn't bring him back but after a while you will know that it makes sense, they can't live for us and still suffer, we have to know that they are free and in hopefully a better pain free place.
my sincerest, deeply felt, condolences to you and your daughter. debbie xxxxxxxxx

Janeen,

I'm so sorry for your loss. Be thankful that Bobby was an amazing enough person to spare you the goryness of the end. I was there when someone close to me was having a cancer treatment done, and their heart stopped. It's the hardest thing to watch them try to revive the person you love and not have it work. My thoughts are with you and your daughter. From everything I've read on here, you are a very strong person, and you will be there for your daughter, but please let her be there for you too. My condolences.

Allison

Debbie,

How are you and your family doing? I hope all is well. I know that the holiday season may be tough for you and your family as you are still dealing with the lost of your husband. I really want to thank you for all of your support and also for trying to keep me encouraged. I also want to apologize for not being on line and taking so long to respond. We had his funeral services and everything went as well as could be expected. However, death seems to bring out really ugly spirits in people. His parents (father) was not very easy to deal with. I'll tell you about that later. I am now in the process of trying to get things together here. Bob and I talked a lot before he passed and he told me all of the things that he wanted me to do but I am having a very difficult time with it. Thanksgiving was extremely hard for me. I feel so lonely now. It is truly unbelievable. I am trying to be stong for Kiersten but it is really hard when I don't know what to do myself. I would love to keep corresponding with you if that is alright. Please let me know how you are doing.

Thank you again for the support.
Janeen