i Feel Lost Sometimes

Hey Debbie,

Thank you for your honesty Debbie, I really appreciate it. Bob and I had a long talk yesterday and I have to tell you that it was mentally draining. The patient rep. told us yesterday that they couldn't do anything else to help him with his intestinal blockage and it has made he and I extremely depressed. This is the first time that I've really had to face that fact that he may not be around and it is really ifficult for me. He previously asked me why I hadn't told my daughter everything that was going on and I told him that it was because I wasn't ready to face that yet. He talks about insurance money and such and how we should be ok but he doesn't understand that it isn't the money that we are looking for. As far as the intimacy issue is concerned, because of the differnt tubes and things that he has, he is generally uncomfortable which makes cuddling and anything else really difficult. I feel like we are being short changed because we have only been married for 2 years. We had plans to do things, extend our family and not it appears that it has all be shut down. One of the things that I am most angry about is that he felt bad for years and wouldn't go and have it checked out. When he finally did, it was stage IV. I'm kind of at a lost because I depend on him so much and really don't know how I wil get things done without him. He and other people tell me that I am really strong but I don't see it. I am however, trying to stay strong and maintain some faith for me and my daughter in hopes that this situation will turn around. Thank you so much for hanging in there with me during my down time. I really appreciate it. How are you and your children doing?

Janeen

Hey Debbie,

I hope all is well with you and your family. I sent you a response last week but haven't heard back from you. Please let me know that things are ok with you and your family.

Janeen

My dear Janeen, hello there we are well, here, hope you are doing better and are getting through each day. Our spring has arrived and the garden has started to have many flowers coming out and even though I hate gardening I have been gardening since we moved into this place so I had something else to think about as my head was always filled with the images of johns last days but mainly being with him in his last hours, I really still can't get it out of my head and the sounds he made and the feeling of utter helplessness. knowing that I couldn't say any thing to him as he was not responding anymore and I have been thinking lately of all the things I want to tell him, and I have to stop myself from saying out loud to the kids to ask daddy where something is or I think that I'll tell John about something funny that I saw or heard, and when it happens I feel really sick in the stomach and very upset that I can't do these things any more. Maybe because on the 29th of September he will have been passed away for 6 months I don't know. I have been getting really angry with him and I know that it sounds wrong, but if he had been diagnosed much earlier we wouldn't be alone and so unhappy, he fought with the little bit of energy he had but you know what?! he always had dignity and respect for every one who tried to help him, and thanked them for it. I on the other hand wanted to make them do more things than they could humanly do and when I had to sign the Do Not Resusitate forms I yelled at them for being so cruel (I know that they were doing their jobs), I am sorry to let off steam to you, is your husband any better, have you been told what his prognosis is (tell me to go jump if you want)even though they can't be very accurate they only go on the way most people with that specific cancer statistically live or pass.
I will try to only have good things to say, our next letter,

until next we chat
Debra

Debbie,

Hey there. I hope things are a little better for you. I want you to always feel free to say whatever you are thinking, that is how we help each other. The feelings that you are having are really natural. Thus far, you have handled this with such grace and love. Not only are you taking care of yourself, your children and your home but you find and make the time to chat with me. You have no idea how strong I think that you are. Having feelings of anger is not a poor reflection of your husband or you you are just sad that he is gone and can't be here with you. I don't know how it feels but I do believe that with time and prayer it will get easier. How are your kids? I hope all is well with them. We drove out to Cleveland Clinic over the weekend to get a second opinion and unfortunately, the doctor there says that there is nothing that can be done about Bob's situation. As the cancer continues to progress, the cancer wraps itself around the intestines. This is the reason that he can't eat or go to the bathroom. This was really hard for us to hear because the more time passes, the more we know that this is not getting better and I hate it. He is so depressed and he is slowly slipping away and there is nothing we can do about it. My daughter had her first meltdown about the situation, she couldn't stop crying. She kept saying that she didn't want him to leave us and she didn't want him to die. This makes things very difficult for me as I really don't know what to say to her. She has never had anyone close to her pass away. Anyway, I hope things get better for both your family and mine.

Talk to you soon
Janeen

Dear Janeen, hello to you and your family, I want to imagine that everyone is feeling on top of the world, I do know it is only imagination and wishful thinking, I have been told many times that you can tell your-self and train your mind to be able to accept anything that happens, to be able to cope, but I was never strong enough. My son and I have just come home from a short weeks holiday with Johns' brother and family they live about six hours away in the country they have, a cow, a shetland pony, chickens (and a rooster that I would gladly make into a roast dinner), cats, dogs, and the property next door has sheep and cows, so we went from the city to the country and had a change of scenery and a bit of a rest. My daughter went at the same time, on a holiday, with the diabetes education group to the Gold Coast (Surfers Paradise), which is a tourist destination that has many theme parks that we could only wish to go to, she was selected to go as I wrote a letter telling them about john and the trouble I'm having with her and the trouble she is having coping with his death and I begged them to pick her out of all the applicants as there was only 36 places, and luckily they did, she hopfully will come back being a nicer person to be around, because I really can't cope with her for much longer.
Have you considered having councelling for, or at least someone to talk to , your daughter about the process that will be happening, because she will need to be prepared, AS WILL YOU, I found I was prewarned but not really prepared. Maybe I didn't have enough time, as Monday the Drs said he only had a few hours left, but the day before he was talking almost coherantly, and I would never have guessed any thing so sudden would happen. Anyway if there is anything that you want to ask and if I can answer it then feel free. If your daughter wants to talk to me or any of my children then also feel free.
until we talk next,
Debbie

dear janeen, hello to you and your family, just a short note to let you know I've been thinking about you and your family and your struggle to cope with the things we shouldn't have to cope with.

you are all in my dreams for a better future,
until next we chat
debbie

Hey Debbie,

Things are about the same with my family. My husband is still not doing really well, however my daughter is doing ok. She is taking a major test today to help towards college admissions. I am traveling this week which I'm not really fond of. My company has me doing some traveling now and I don't really like being away from them especially when he isn't feeling so well. Anyway, I'm sitting in a training now so I'll send another email later.

Hope all is well with you and your family. Thank you for your continued thoughts and prayers.

PS How was your vacation with your son and did your daughter have a great time on her trip? I know it was quite a blessing for her to be chosen for this trip.

Peace and blessings,
Janeen

Hey Debbie, Things are about the same with my family. My husband is still not doing really well, however my daughter is doing ok. She is taking a major test today to help towards college admissions. I am traveling this week which I'm not really fond of. My company has me doing some traveling now and I don't really like being away from them especially when he isn't feeling so well. Anyway, I'm sitting in a training now so I'll send another email later. Hope all is well with you and your family. Thank you for your continued thoughts and prayers. PS How was your vacation with your son and did your daughter have a great time on her trip? I know it was quite a blessing for her to be chosen for this trip. Peace and blessings, Janeen

Hi! I also live in Chicago, and my father is battling NSCLC, and had a lung removed in January, and then mutliple rounds of chemo. First, I'd like to say how nice it is that the two of you, who have so much in common, were able to find each other and offer each other support. Janeen, I did a ton of research when my dad was diagnosed. If you haven't taken your husband to the University of Chicago for an opinion, I would highly recommend it. It's the only hospital in the area that was rated one of the top ten for cancer treatments. We are so lucky that we live so close to one of the best hospitals. I had quite a time convincing my father to go there, but he agreed to meet the doctor that I had found, and we also met with a doctor from his local hospital, and there was no comparison between the two. Meeting the doctors convinced him. It's been about 9 months - almost to the day since his lung removal and he's enjoying the sun in Cancun with my mother right now. I hope that you are able to find someone that can help your husband like that too! Best of luck to you both and your families.

Allison

Janelle and Debbie...I am glad you have found each other. Terminal cancer can be so isolating...not only for the patient but also for the caregiver and family.
My partner of seventeen years was diagnosed with NSCLC almost three years ago. They say she had probably had it for 5-7 years. She had regular chest xrays, but apparently the initial tumor was behind her heart where the xray wouldn't show it. We had a great relationship, lots of adventures, travel and sex. All that ended several years ago when her behavior became strange. Eventually she asked me to leave the home we had built together. I did, until 6 months later when I got a call from her saying she needed me to take her to the hospital. Her cancer had metastisized from her lungs to her spine, and she could not stand up straight. WE were in absolute shock at the prognosis given by her oncologist...6 months to two years.
Because her physical abilities were rapidly decreasing, I built a one story (vs. 3) home for us to live in.
Since that time there have been lots of tears and fears.
But about six months ago, she started to get mean to me. I was accused of trying to rip her off, not loving her etc. This despite the fact I spend many hours a week looking for potential new treatments, giving her expensive nutrional supplements ($300. monthly) in addition to modern medicine. I think this approach of naturopathic and traditional medicine has served us well...as she has beat the life expectancy odds by a lot.
Now she is having hallucinations, and believing them. Foremost is one that I have a conspiracy with my 34 y.o daughter and her 2 sons, 3 and 5...in the hopes of kicking her out of our home. My daughter has recently filed for divorce and is temporarily staying with us. The house comfortably accomodates us all. Fact is, I had to quit my job over 2 years ago in order to take care of her. Daughter pays me to provide daycare for the kids...about the only job I can have and stay home and also care for her. Additionally she buys all the groceries and pays a percentage of electric and phone bills.
She has become so paranoid that she has revoked the release of information to her psychiatrist, and oncologist. They are both concerned about this situation as I have been the only one to accurately report events, medications etc.
Almost every night she manages to get us into a fight. I am and always have been pretty laid back...I don't like conflict. And throughout this cancer experience...I have tried so hard to reassure her, go to all of her dr. appts. maintain the home and assure her she is loved.
Unfortunately, I tend to see the glass half full, she sees it as half empty.
At this point she is extremely negative...she makes it difficult to communicate with my family and friends. They all kind of distanced her after she gave me a black eye on Xmas day. Only once before she had gotten physically violent. Her memory is shot...she never knows what day it is or if we have appts. that day. I feel so bad. She was a kid raised in the projects who left home at 15, got her Masters Degree in Psychology and went on to help hundreds of others.
I am in a quandry as to how to respond. If you have any input, please respond. All of you take care....this is indeed a difficult road,