CancerCompass message board discussion started by Inazone2 on 1/3/2006 http://www.cancercompass.com/message-board/message/all,3910,0.htm Sun, 12 Oct 2008 00:00:00 GMT Sun, 12 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband was diagnosed with gastrointestinal cancer in June of 2005. We hadn't been married a year when we got the diagnosis. I am so heartbroken about this. The first set of doctors didn't seem to be in the fight with us so we are now being seen at Cancer Treatment Centers of America. They seem to be a little more optimistic. My problem is depression. In addition to trying to take care of my husband, I am taking care of my daughter who is type I diabetic. I sometimes seem to be very overwelmed and don't know what to do. Any advice out there? I woud love to have it. J Inazone2 Tue, 03 Jan 2006 00:00:00 GMT You have my prayers. Vinnie Daddy's Girl Wed, 04 Jan 2006 00:00:00 GMT I feel your pain. I have been trying to help a sister, brother in law and mother all with colon cancer. I was widowed at 28 and had a stroke at 38. Now you know, Im understanding all you are going through. First, take care of yourself. Take up a craft, work on puzzles or cook. Get your husband and daughter crafting with you. Anything to give your mind a break. I found that a walk in the yard and thinking of things I could do in the garden was wonderful. Be sure you are opening your shades and enjoying the sun. Dont lock youself in the house. Get someone to help you at the house and go have lunch with a friend. Fix your hair, put on makeup, it makes everyone feel better! Second, dont lose your hope. That is a waste of time to think of the worse, it helps no one. Third, ask questions. The doctors will answer and knowledge will help overcome helplessness. And last, do whatever you think you need to. Live your life with no regrets, make the decisions that in your heart, you know are right. If your husband wants to go to the beach, by gosh take him. He will feel better doing whatever the heck he wants to and so will you. You can do this, you know it. Work to give your family a happy life and you will all be fine. My prayers and wishes are with you all. Colleen Mscolleen Fri, 06 Jan 2006 00:00:00 GMT Cancer is an insidious disease, and it's comforting to know there are others out there who can relate to what you are going through. Take time to allow yourself and your husband to think about things other than cancer. Keep in mind, he is a person outside of this cancer, and the more he is allowed to dwell on other things, the better. Keep him laughing, and in turn, you will laugh and feel better. Laughter is a powerful ally. Be well, and take care. Lisa Imatarb Sun, 08 Jan 2006 00:00:00 GMT Dear J. I am 31 years old and my fiance was only 27 when he passed away, he died Dec.2005. We got enganged set a date for Sept.3 2005. 2 weeks before our wedding date he needed emergency surgery. It was hell watching him go through this. I regret not marrying him, I just always thought he would be fine. The cancer centers of america is a smart move. I had days when I thought I was going to crack, looking in his eyes was the worst and watching him be scared and him not expressing himself but you know what he's thinking. I was awake with him at night helping him, he couldn't walk, feeding him, loving him and I wouldv'e took care of him forever. Stay strong for him he needs you to stay optimistic. Kick depression out the door,do not give up on him. Get some help at home,there are people who can help you, cancer centers of america can give you some info. R Rosiero74 Thu, 26 Jan 2006 00:00:00 GMT My husband who is 32, was diagnosed with Cancer in October of 2005. His diagnosis came 2 weeks before our first child was born. We have been devasted by the news. He began Chemotherapy on halloween day 2005. He has been very sick. I am 25 years old, and being a new mommy and having a sick husband has been very tough. We have alot of bad days, but when we look forward to the good days. My husband is so strong, even though some days he can not hold his head up, he still trys to find humor in all this. Which helps me deal better with the situation. We dont know if the chemo is gonna work, I guess that is with any case, but we are living on hope, prayers and faith to see us through. I am so sorry to hear about your husband passing away. I can only imagine what you are going through. I will say a prayer for you and would love to hear back from you. I am looking for someone I can talk to that might relate to my situation. Thank you. Punkin Sun, 29 Jan 2006 00:00:00 GMT Hi, I understand what you are going through.Loosing the love of my life,I can't explain the feeling.A part of me is missing and I like to think he took it with him. To watch them go through this is torture. I pray that your husbands chemo works and he comes out of this.Having a new born I'm sure is tough while going through this, but trust me it's a blessing.How I wish I had that. I feel like my life is over especially with out having experienced more with him.The only thing I can tell you is be strong for him and do not let a day go by with out telling him you love him. Live everyday with love and faith.My husband was strong and always made jokes too.When it got closer to the end he couldn'talk anymore and what kills me is that I know he wanted to.I was looking for someone who might know what I am going through. Thanks for replying. RC Rosiero74 Sun, 29 Jan 2006 00:00:00 GMT Thank you for your thoughts and much needed advise. I apologize the the delay in responding. I have really been trying to give him the room and freedom to do the things that he likes to do but it is reallyy hard because I worry so much. Lately, he has been getting dehydrated and passing out and this terrifies me. I will continue to maintain hope. Thanks again, J Inazone2 Tue, 31 Jan 2006 00:00:00 GMT someone told me when I started on this journey with my husband. to place both feet on the floor every morning and take a deep breath and stand up and place one foot in front of the other, because every journey begins with a single step no matter how long or short it may be. and most important remember you are never alone. DMR/ASTRO Astro1 Fri, 03 Mar 2006 00:00:00 GMT I read your email and felt that I needed to talk to you. My husband of 21 years died in march 06 after only 11 months of being diagnosed. He had nuero-endocrine cancer of the prostrate. We have three children and yes our middle child a daughter is type one diabetic and I have type 2. NO it isn't easy and sometimes you feel like you are the only one in the world having so many bad things happen to you sometimes all at once. And even though our partners are the ones who are very sick we do wonder what did we do wrong to deserve the pain and stress. How is everything going now, can you cope or do you want to scream, I haven't yet I just try to keep sane each day and to be there for the kids and even though I am having counselling {something I never thought I would need,] trust me It really helps to talk to someone who cares and has been through similar circumstances. I am someone you can cry and talk to any time. regards debbie Debluc Mon, 03 Jul 2006 00:00:00 GMT Debbie, I am so sorry to hear about the passing of your husband. I am sure that it very difficult for you and your children. I haven't had the opportunity to sit down and scream yet. I have questioned why this has happened to our family and still haven't a clue. I went to a support group at the hospital but it didn't seem to do much for me. I am glad to hear that you are in counselling and I really hope that it is helping you. My husband has had his second attempt at having a gastrectomy to no avail. The cancer is too far spread in his abdominal cavity so he is no longer a candidate for the surgery. The doctor's are now using chemotheraphy as a means to prolong his life. I am praying that at some point his cancer goes in to remission and we can start to lead a normal life again. I really appreciate your reaching out to me and I would like to do the same for you. If you ever need to talk definitely give me a shout. I apologize for the choppy message but my brain is fried. How long was your husband fighting cancer? Warmest regards, Janeen Inazone2 Tue, 04 Jul 2006 00:00:00 GMT Dear Janeen, Thankyou so much for replying to me I really appreciate your thoughts, you asked me how long my husband suffered with cancer,. He was diagnosed in April 05, and was at first given about 24 months before he would start to decline, the doctors told us that he had a rare type of prostate cancer and that only 5% of men have been diagnosed with it in Australia, also he was the youngest being only 48. He started chemo in May 05 and had only three cycles but was told that it wasn't helping and to try radiation, he was so scared but never let us see how much, he tolerated chemo very well and did loose all of his hair but when it grew back it was so curly and baby soft he was able to make jokes all the time with the kids and friends. He had a month straight of radiation and did suffer very much with the side affects it caused. After radiation finished, about three weeks later a new man appeared he felt well and even started to do things outside in the yard. He always told me to stay inside while he was doing something and became very mysterious. He started to feel ill again but soldiered on and he presented me with a wishing well he made from old paling fence wood.It really became a labour of love as he could barely stand for 10 mins at a time now. I love it and have actually put his ashes inside the well and we sit next to him and talk have a coffee say good morning good night or just sit and think. The kids know he is there, and feel he will always watch over them. In October he went into hospital and they told me that he may only have about 10 months approximate as the cancer was growing to fast. I never let him know , He had enough nightmares about what was happening to him as it was. In December he went back into hospital and unfortunately our rental house was sold and we had to move at the same time now we had to find a house that was ground level and no steps and of course if we could afford it as we were now on a diabled pension. He couldn't help with the moving and even though he was too weak to help I think he would have felt as though he had some say and control of his life, he came home the day before christmas eve, he felt well and even wanted to do some christmas shopping. He liked our new home and even though the kids had to change schools and had to meet new friends they never let on how much they hated what sadness they were going through. In February he went back into hospital for three weeks and this time they told me he didn,t have very long as he lost his eye sight in the left eye, his liver, spine, lungs,and his right eye was deteriating, he fought hard to come home and he was only home for a week before he had to return as now his blood wouldn't clot and we couldn,t slow it down due to his platlets he was in hospital for two weeks , the doctor came and told us that he only had a few hours left and to say any thing we had to say, now, I was in so much shock that we just sat there next to each other and said very little the kids were to scared to say anything as they told me later that if they said any thing that it meant that he was dying and they thought that if they said nothing he would live.{if only it worked} he died with all of us around him two days later. He was one of 9 children and all of his family and their children were with him also. He said he didn,t want to die alone and he certainly did not. He had cancer for 11 months. I am actually alone for the first time as my children have gone away to a camp for bereaved children with a group called Canteen the group is especially trained to help them to cope and meet other children going through the same sadness. My children are a daughter 19, my diabetic daughter 13, and my son 12 {who is his father exact}. Well I certainly have told you more than I meant to, sorry, please let me know how you are going, how old are your child/children do they understand {who really does}, regards to all Debbie Debluc Tue, 04 Jul 2006 00:00:00 GMT Debbie, I am sorry sorry about your loss. I think the camp is a wonderful idea for your children. Question, are you taking care of yourself? I'm sure that it is not easy but you really need to take care of yourself for the benefit of your kids. I am 37, my husband is 40 and my daughter is 13. I try not to get her overly involved in what is going on with him. She knows that he has cancer and that he will be on continued chemo. She really worries a lot though. She has asked me on several occassions if he is going to die and I really don't know how to answer her. Someone asked me today if I were prepared for my husband's death and all I could say is how can I be. I know that he isn't well and that death is a possibility but I don't know how I will make it without him. We married in 2004 although we dated for 8 years prior. I really feel like we are being cheated out of our marriage. There are so many things that we planned on doing that won't happen (atleast any time soon). I love my husband but his illness if definitely taking a toll on us. I stay stressed a lot, I have gotten to the point that I don't sleep a lot and I seem to be losing weight although I am not trying too. I recently had a scare of my own, I found a lump in my breast and had to have it removed. Fortunately, is wasn't serious. What are you doing with yourself now? Where was your husband being treated? I know that you miss your husband but he sounds like he was a wonderul man and that labor of love was one of the best things that I have heard in a long time. I must feel great to know how much your husband adored you and your children. I know that you all moved, what happened with the well? How are you all adapting to your new home? I don't think that my husband believes that he is going to make is past this chapter in his life. We moved last week because the area that we were living in was changing drastically. The neighborhood had changed so much that my daughter couldn't walk 5 houses down the block without someone walking with her. He worried about being able to take care of us in the event that something happened and it was really stressing him so we moved to a much better area so that we could all be more comfortable. In fact, we moved a week ago. I found out yesterday that one of my neighbors was just robbed at gun point the other day. It was really a blessing to get out of there when we did. Please keep in touch with me to let me know how you are doing. I would really like to know. Also, how did you hear about the camp for your children and where is it? Lastly, sorry for the delayed response. Janeen Inazone2 Fri, 07 Jul 2006 00:00:00 GMT Janeen, hello there how are you? hope this reaches your family on a good week! have you noticed there are many similarities between us?, What country do you live in, This is the first time I've ever had the internet so it is a real novelty but what a joy it is to be able to discuss any thing we want to, say our inner most fears and wishes and be able to cry while we do it, and still hold up our heads. I couldn't imagine what it would be like to live somewhere a gun man could rob your family. Yes we have the same sort of violence in our country but not where we live thank goodness. You asked where my husband was being treated, he was mainly treated at home by me, and a community nurse{community angel really,} she came over every second day or more if I rang her up. We became very close and she was very helpful in getting some of the more expensive medications we couldn't afford. And to admit him into hospital because we didn't have any health fund so it usually is hard to be seen immediately.Of course when he was admitted he was treated just like royalty the care given by the palliative care team Drs and nurses {do you have palliative care teams where you are}?. The camp my children went to is run by a group called, Canteen it stands for Cancer for teenagers being a patient, off spring or a sibling, or friend of a cancer patient. It was started by a group of teenage cancer patients because they found there wasn't any councelling groups for kids 12 to 24 years and kids still need fun in life to be able to cope with adult stresses. I was very sad to hear your own terrifying scare with your breast, how are you, do you have anyone to help you at home our palliative teams can come into the home and look after the patients for an hour or three, so the carer can go out to do anything they want to. We do need to see other people and other surroundings,and to recharge your batteries. Personally when my children were told he had cancer and we said that he was really sick and the drs can't fix him but they will make him feel as well as they can for as long as they could, the first question my daughter asked was daddy going to die, I took the opportunity and told them the truth, that yes he will die {their imagination of what could be happening and what the truth is can really affect their emotional well being} and we have at least the chance to have the most valuable time with him, because if he died in a accident we would never be able to say our goodbyes. They coped with the truth better than seeing him deteriorating before their eyes and not understanding why. It wasn't such a shock when it happened. Everyone has to deal and do what their heart tells them is the best way to cope. I have people {well intentioned though} that still tell me you will get over it and will just have to get on with things, well to hell with them, {sorry}, they cannot know how hard it is to be the decision maker the problem solver, the handyman when you have no idea how to do the things he used to do I am learning by trial and error,. I hope your husband can talk to you about his fears and trust me he will have them even if he doesn't show it. Every time hubby talked to me I had to become very strict with myself and to stop crying and to try and get through a whole conversation with out breaking down he hated it when I cried and told me he didn't have enough time to wait for me to stop and to cry when he was gone I thought he was mean but it made sense because I realised it made it hard for him to get through his day. We have his ashes buried inside my wishing well with roses around it, so I'm going out now to have a coffee and to think of what was, and now will be, sending strength to you and yours, Debbie xxx Debluc Sat, 08 Jul 2006 00:00:00 GMT Debbie, We live in the Chicago (USA). We definitely do have a lot of similarities. I must tell you that you sound so incredibly strong. I hope that as things continue with my husband that I can be the pillar of strength that he needs. My friends tell me all of the time that I am strong, however, I don't feel like I am. I know you are right about telling your children the truth and that is something that I have always done with my daughter. I think a big part of the reason that I have not given full disclosure is because it was something that I didn't want to face myself. I think I had many excuses for not being totally honest. First it was truly because I knew that he was going to beat this then is was because she was starting her freshman year of high school and I didn't want to worry her because she is very sensitive when it comes to family. Then it became too close to finals to say anything and now I don't want to ruin her summer. My daughter is very bright, I'm sure she knows more than I am telling her but is trying to stay strong herself. Where do you live? That I am aware of, the only way to get the kind of care that you are talking about is if a doctor orders that kind of care and the doctor's here seem pretty reluctant to do that. Also, my husband is really proud and wants to do things on his own. I suppose at some point I'll have to tell her everything. Right now, he isn't feeling too well. His 40th birthday is next weekend and he just said to me that he seems to be deteriorating right before me and wonders if he is going to make it to his 41st birthday. I really don't know what I am going to do without him around. I am still prayerful that he will recover from this. I do know what a wonderful man I have. He is always thinking about us first. Lately he has been trying to make sure that things are in order and that my daughter and I don't want for anything. He wants to make sure he leaves us in a better position. His self esteem seems to be at an all time low. He has lost so much weight that he doesn't really care for his appearance anymore. He however is a little different from your husband in that he doesn't talk much about how he is feeling and how scared he is. Sometimes we simply co-exist in the house together. I really hope that your children enjoy the camp and that it takes a little bit of the stress off of them but mostly, I hope that you can maintain continued peace. I am really pleased that you reached out to me. It is very difficult to talk to other people sometimes because they really don't understand. You and you family are in my thoughts and prays. I look forward to your new message. Take care and thank God you are internet savy now or I wouldn't have anyone to correspond with. Janeen Inazone2 Sun, 09 Jul 2006 00:00:00 GMT Janeen , hello there, wishing you are all well, I can't tell you just how much joy our correspondence between us is bringing me, even though our circumstances could have been for much happier reasons. I find that I'm looking forward each day for a chat. Yesterday {Sunday} it was such a hard day, firstly I new that our lawnmower needed new blades so I bought them and lifted the mower onto the table and got organised went through many tools until I found the right sort to use to take off the old ones, but then I came to a complete stop, do you think I could take off the old blades NO they were just so tight that I had no hope, I was so fustrated as I knew that it was the only thing stopping me from being able to change them and then mowing the lawn and knowing that I have done it on my own. It would have been another acheivement that I need to accomplish. Two hours later I'm still trying when my brother-in-law and sister-in-law came over for a visit, he had a great deal of trouble changing them as well {It made me feel a lot better] Any way the lawns are mowed the edged are trimmed the yard looks neat and tidy and I do feel proud of doing almost everything on my own. I do hate using the lawnmower but it is something that has to be done. I have been trimming the trees down to small reachable sizes so that they are easier to look after, I know that I'm only making myself exhausted each day so that I don't think about bad events as sometimes they dominate my brain matter and I can't get through the day without being so down and that in turn makes the kids sad so they know now that when I start digging or chopping or gardening to keep apart for a while. To day is Monday it is a better day very sunny and warm for a winters day. My daughter is going to have a friend over to stay, and she is very excited as her friend lives near our old house area and hasn't seen her for a long time . My son has taken the opportunity to ask his mate if he could stay at his house. As it is still school holidays it will be fun for them. My eldest daughter has just been told {she was one of three} that they are terminated immediately {they wrote this in a letter} due to a down size of labour force. She was an Aged Care Nurse, and, I felt, very good and caring at her work. So now she has decided to train in office work instead so I wish her luck. My daughters friend has arrived and between the loud music and giggling {doesn't laughter make you feel good}, I am going to try and cook a roast chicken dinner, before the house is turned into a messy pile of clothes and make-up. my best wishes to you all until next time Debbie xxx Debluc Mon, 10 Jul 2006 00:00:00 GMT janeen, Hello to you and your family, I haven't heard from you for a little while I pray that there is only good news and that nothing has happened. Did you do anything for your husbands birthday?, I hope you were able to do something with each other. How is your daughter, how is her diabetes going,? has your husbands cancer affected her blood levels due to stress, My daughter is having a horrible time of controlling her readings since her dad took sick and especially since he died. She is having councelling, from the diabetes specialist, councelling from the palliative grief centre, but nothing seems to be able to help her come to terms with everything that has happened. We are trying to save up enough money ($6000), it just is too much, for her to be fitted with the pumps that inject the insulin into them as they need it and the drs feel that she will be better contolled. I hope so but it maybe something she will have to get for herself when she is working (a few years time yet). Does your daughter have many injections a day, mine has five a day and she hates every one of them. How are you going are you alright, do you have any hobby or favourite past time that you try to do for your self- preservation I hope so. Is your husband still having chemo,? has he had any radiation to try to shrink the tumors?, If so I hope he is doing O.K.. How is your new house going do you like your neighbours, We moved into this house in December 05, and have only been spoken to by the people across the road, they are quite nice, I think because my husband was so sick when we moved here that they probably didn't know whether or not to come over and talk, and of course they all saw him being taken away by ambulance and they all heard that he died, that now no-one speaks to me or the kids. I haven't made any advance to go over to them either , time just keeps going on and now I feel uncomfortable about making an approach. Please let me know how things are, when you have a spare few minutes. sending you strength to carry on, Debbie Debluc Tue, 18 Jul 2006 00:00:00 GMT Hey Debbie, Sorry for the delay in my response. I have had so much going on over here. I got unpacked for the most part, however, I still have a lot to do. Bob hasn't been feeling well lately. He started chemo again today and that usually takes a lot out of him. He goes for 5 consecutive days, 6 hours a day. He had radiation before and that really made him feel bad. We had a birthday get together for my husband the past Saturday. He had a very good time as this was a very good day for him. You and I must really have a strong vibe. I was on the phone with the diabetes specialist today. My daughter's sugar has been really high lately. It's bee 400, 500 and even 600 sometimes. I'm not sure if it is the stress or puberty. She is maturing and filling out a lot and children's hormones do play a big part in elevated glucose levels. What type if insulin is your daughter on? Right now my sweetie is on humalog and NPH. She has an appointment at the beginning of August. THe specialist and I talked about putting her on Lantis so that she can have more flexibility in her eating schedule. I have to be honest with you. I am so tired and so stressed that I am losing weight, although I am not trying to. My husband's health doesn't seem to be getting much better and it really makes me nervous. He has really good days sometimes and then other days they are really bad. A friend of mine asked me the other day what did I want to happen with my husband and of course I gave the obvious answer and he reminded me that that was a selfish response and that on God knows what is going to happen. I try to stay positve and strong but it gets really difficult. Our relationship seems strained because we can't do things that we used to do, the level of intimacy has changed and we sometimes seem lost as a couple and I have no idea how to fix it. We love each other but have only been married since 2004 and I feel like we are being cheated out of what our lives together was supposed to be. Anyway, to answer your other question, no I don't really have any hobbies or anything that I generaly do. I spend most of my time taking care of my husband and daughter or working. I asked my daughter if she wanted the pump and she isn't sure that she wants to be hooked up all of the time. I think right now the lantis will be her best bet. Why does your daughter have to take so many shots a day? Where do you all live and do they have the same type of insulins that we have in the US? Anyway, enough about me. How are you and your family doing? How was camp for the kids? Have you had any time for yourself? I know the pump is really expensive. If you are having financial issues with getting it, why not try to contact the manufacturer and see what their assistance program is ike or whether they will give you one and monitor your daughters progress. Again, I apologize for the daly in response but I definitely look forward to hearing from you again. I hope that you and your family stay blessed. Janeen Inazone2 Tue, 18 Jul 2006 00:00:00 GMT Dear Janeen, Hello how are you, how is your hubby, and daughter? I hope that he is doing well as he can. I know that each day is as different as chalk and cheese, One day up and one day low. On his good day I hope you can both do something nice even if it is only watching a movie with each other, or maybe sitting somewhere nice and watching the beach and waves. We use to do that a couple of times before he couldn't sit in any one position for long. How is his chemo treatments going has he lost his hair? John lost his hair and when it grew back it was so soft and curly and grey, (he actually had dark brown and very straight hair). Do you mind if I asked you what sort of cancer your husband has?. You asked me what sort of insulin my daughter is on, in the morning she has two types actrapid, and levemir, during the day she is on novorapid, and levemir, over night. We are trialling levemir so hoping it will help reduce her readings. I took my children fishing the other day , I don't know a thing about fishing, but john wanted me to buy my son a rod for his birthday,(in June) but we haven't used it until now. Of course I haven't a clue what to do, but unfortunately it wasn't as good a day as I wished it to be. I think that my son realised that without John fishing was not fun any more, he was cranky, had no patience, and just threw his rod down and gave up, it made me realise that there will be many things that I just wont be able to replace John. How is your new home going are you settled in yet? How is your health going, you said you are losing weight, that is something that I wish I could do as since John became sick I have been eating any thing I could find (his Dr said it is comfort eating) but now I still can't stop. Especially when I start thinking about every thing that has happened. We are having Daffodil Day here in August, the funds raise money for cancer research. I never usually join these type of voluntary organised groups but I will this year. They sell Daffodil flowers, pens, stress balls, badges, and other little nickknacks. Well the kids are coming home from school now so I will close , until next time, I send you all strength for each day. Debbie Debluc Tue, 25 Jul 2006 00:00:00 GMT Hey Debbie, I'm really glad to hear from you. I started to get worried after a few days of not hearing from you. My husband has stomach cancer. The cancer is not in his stomach, it is in the lining of his stomach. His hair fell out and is now growing back. As you mentioned about your husbands hair, my husband's hair is growing back and it is so soft and straight. You are so right about good days and bad days. He finished his last round of chemo on Saturday and is still feeling pretty bad. I on the other hand really appreciate your responding back to me. I am so stressed. My daughter broke down crying yesterday telling me about how I always seem to be frusturated and never seem happy yet I always seem to take things out on her. I apologized and told her that I didn't mean to do that and that I would try really hard not to let it happen again. I think at age 13 she can't really understand how much I am juggling. I am trying to take care of my husband to keep him happy and comfortable, take care of her and keep her happy, take care of the house, work and then me. I have so little time for myself now that seem to be depressed a lot. You mentioned going out with my husband, honestly, I don't remember the last time we went out to do something together that seemed somewhat normal. It can really be a drag. I know that he hates it as much as I do. He wants us to do things together but he doesn't feel up to it most of the time. How are your children? Was camp good for them? I've only heard of one of the insulins that your daughter is taking. I checked in to the pump for my daughter last year. They are really expensive here. My daughter isn't sure that she wants to be hooked up 24/7. I think that maybe by the time she goes to college, she may want it. The option that she has for insulin with lantis may be the best thing for her. I didnt ask you earlier, how are you? How are you adjusting to things? I'm sorry that the fishing trip with your son didn't go well. It will take a lot of adjusting to on his part and yours but I'm sure over time you all will establish things that he loved to do with his dad but will also enjoy with you. Maybe you should buy a book on fishing so you all will have a better experience next time. Debbie, stay strong, your kids need you and I really enjoy talking to you. Be blessed always. Talk to you soon Janeen Inazone2 Thu, 27 Jul 2006 00:00:00 GMT Dear Janeen, Hello sorry for not replying but I haven't been feeling very sociable lately, I really hope I can lift my self up as at the moment I'm quite blue. As you know sometimes things just seem to bury you and you can't see the light, I know it is there , but where?,. My kids have shown me how to use the MSN and Hotmail. Would you like to write to me this way if you do my MSN address is, --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- I don't know the time differences between Chicago and Australia but we could work it out. Anyway how is it going with you and your family? I think that puberty should be banned if you have a daughter .I hate what mine is going through. Of course I don't know anything that she does, and anything I say is wrong, her BSL readings are coming down to an acceptable level but I have had to be so strict that we are fighting all the time, she thinks that she can do what she wants and still have the readings the Drs want her to have. I know that it will work out in the end but, oh boy! I'm having trouble getting Johns' tax group certificate from our Centrelink agency ( of course it is a government agency),I have been trying for the past month and each time they said they have sent it to me, and I say that I haven't received it seems to be just to hard for them to post it to me. Of course I can't get our tax done without it and I can't tell the dentist whether or not to go ahead with my sons braces if I don't know how much tax i'll receive. I said can I come into the office and pick it up, and you know what they said, the only one that can pick it up is john, as I'm not down as his partner anymore, I said are you serious , I said John has died in March !how on earth can he come in, she said that is just policy . Well it is just another hurdle I will have to jump over. If I wasn't so down I would probably laugh at the stupidity of it. How are you going have you stopped losing weight?, The ones who loose weight usually don't need to, but people like me never loose. Unfortunately I have been using any type of food as comfort food and I have put on an astronomical amount. I always have been big, but I can't seem to stop myself, even though I know that it is hurting my health I am type 2 diabetic and I should know better. Does your husband talk to anyone on the net about his cancer, like we do? he might find some help this way. Please try to get past the anger at each other, because you are not angry with each other just at the cancer and the stress it brings. The only time we actually went out together for a meal and to the pictures (which was a surprise for me), was 19th January 06, we went to a chinese, resturant, and to the pictures, it was for our 21st wedding anniversary, and I will always remember it as we never went out for our anniversaries before. Poor john tried to enjoy the movie but he couldn't, even stay awake, he had developed hypercalcaemia,( but we didn't know it then ),he said he did have a good time . I was going through some papers last week and found some old pastport photos of John when he was well, and I think that the surprise of finding them has upset me more than I could have thought possible. I don't know why because we have pictures of john all over the house. Well I'll say goodbye until next we chat, Debbie Debluc Tue, 01 Aug 2006 00:00:00 GMT Dear Janeen, I am worried something might have happened I haven't heard from you in a while, I hope that things are going well. Please don't forget that anything you need to let off your chest you can. I've missed talking to you, our chats have been keeping me going through some tough days, If you are finding the pressure to great, I know that I can't be there with you but in spirit I am. Please let me know how you are, until then best wishes Debbie. Debluc Sun, 13 Aug 2006 00:00:00 GMT Hi Debbie, I'm so sorry I haven't written in a while. I hope you know that I think about you and your family all of the time and feel very blessed to have you to talk to. Unfortunately, Cancer Compass doesn't allow you to put your email address out there so we'll have to work around that part. I'm sure it is for our own protection I too have an email account with hotmail and sbcglobal.net. I've had both of my accounts for quite some time now. My id is --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----. I haven't written in a while because my husband has been really sick. He put off his chemo treatment because he said that he just wanted to take a break from it. He then turned around and ate some food that didn't agree with him and got really ill. He started his new chemo treatment on Monday and is now trying to hang in there. My daughter, just like yours is going through puberty and can be a handful most of the time. She burst out crying a week or so ago saying that I always seem frustrated and seem to take it out on her. I explained that I am just under a lot of stress but certainly don't mean to take things out on her. A big part of the problem is that she didn't have anything to do this summer so we kinda got on each others nerves. She is at camp now for a week which should give her an opportunity to havea good time with her friends and other girls her age. School will start soon and that will be good for her as well. I am now trying to keep the boys away from her. She is maturing now and the boys are starting to take notice so I need to keep her focused. I don't want her to take the attention from boys the wrong way because she thinks that I don't have time for her. I am planning an overnight thing for us so that she and I can talk and get back on the same path. How are things with you and your family? I'm sorry to hear the the government is giving you the run-around. Have you been able to get the information that you were waiting for? I really know how you feel when you are down, you are in a funk and don't know how to get out. I worry so much now about what I'm going to do if something should happen to my husband. How will I make it, what will I do. I never really realized how much I depend of him. He used to take care of so much and I always took those things for granted and now that I am doing them myself, I feel lost. I mean little things from cutting the grass to car maintenance. I recently bought a lawnmower and have to now start cutting the grass. I'm really sorry that I haven't been there for you but I promise I will do much better. Please share your email id with me and I'll figure out how to get in touch with you. With mine, just add the account. Anyway, I'll be in touch soon. I hired my cousin to do some work at my house so I could get it rented out, unfortunately, I trusted him and paid him and the work never got done so I am paying 2 mortgages right now because I can't rent the place without the work being done. I has really had me depressed. I now have to find the money to have someone else do the work and that is really a drag and it has my husband worried about finances as well. It is 10:50PM on Wednesday, August 16, 2006 and I am about to go to bed but will definitely write again tomorrow. Until then, Peace and Blessings to you and your family. May the Lord keep you and your family in the palm of his hand for renewed strength and protection. I know that your husband is watching over you and your family and is pretty pleased with your strength and love. Talk to you soon, Janeen Inazone2 Wed, 16 Aug 2006 00:00:00 GMT Dear Janeen, I can't tell you how relieved I was when I received your message. How is hubby going?, well now I hope. It is good that he has re-started chemo, any chance of something working towards fighting the cancer really has to be attempted. I certainly can't know how it makes a person feel, only can speak of my own experience of how John coped, and he wished that he had a chance of trying anything that might have worked. Is there a chance of any other procedures for your hubby to have for some relief of symptoms.? I have finally received the group certificate that I have been fighting to obtain for over a month now. After many phone calls one operator went that one step further for me and found out the mail was not being sent as John's files have been transferred to a deceased files section, even though they knew he had died after me explaining the situation every time I rang, anyway she was able to re-write them and fax them to me instantly. After all my worry of getting them , when I had my tax done, I am only receiving $500.00, because we received his Permanent and Disabled super payout one week before he died, so apparently it changes the taxable amount. Oh well at least I don't owe them anything. I have just come home from the orthodontist and he wants $5800.00 for my sons dental plates and braces. I tell you it just keeps raining down on me at the moment. The storm has to stop soon and let something good happen. My daughter has the chance of going away with a diabetes group for 13 to 18 year olds in October to a theme park it is in another state, and the trip is for 6 days, but there is diabetic nurses, educators and of course Doctors, so I have asked them if they could sponsor her for at least half of the cost, so here is hoping, I don't think there will be a problem. And yes the boys have been around for at least a year now she is very popular and unfortunately very imature, but very maturely developed, and she very much craves the wrong attention. How is your lawn mowing going , I don't really mind the grass cutting but I don't know how to use the wipper snipper for the edges and around the fences. The car maintanence is a worrying thing as I know absolutely nothing about cars and to have someone look at anything it costs a great deal. I would like womeone to write a book on how to do the things we have to do, in a way that we could learn by easy to see pictures so you know what part they are talking about I find that if it is only written I sometimes don't know what part is what. Also there could be a book for men as well , if their partner dies and they have never done any household things e.g. washing machines, ironing, sewing, especially if they have children to bring up. Anyway I'll keep looking in the shops. Today I was sitting outside looking up at the sky, it was amazing the way the clouds were just like the white tops of the waves at the beach, we are almost through our winter and spring is just 2 weeks away so it was very warm, and as I stared at the clouds something came over me and tears were running down my face, I got really angry with the way things have turned out and yes I even was angry with john, for getting sick and not beating the cancer. (I really do not think he could have tried any harder) Of course it lasted for only a few seconds but some how the peaceful clouds made me think of him up there and he left me here and feeling so miserable. (Now I have had my self pitying minute), well it's 11.20 p.m and it's time for bed or I'll never get up in the morning to wake everyone up, so until we next chat, Debbie Debluc Thu, 17 Aug 2006 00:00:00 GMT Hey Debbie, I once again am sorry for the delay in response. Bobby isn't feeling well at all. He had recently put off his chemo session for a week and just completed this last session on Friday. He has bad nose bleeds and is vomitting and is not have a problem with diarrea. He doesn't sleep anymore so he is up all night. He just told me that he feels extrememly useless and doesn't feel like he is contributing anything to the family. I am tired most of the time as I am trying to handle things around here, take care of Kiersten and handle the things that are going on at the other house. I have to sue the contractor that originally started the work on the house because I paid him and he ran off with the money without completing the work. I really don't know how you do it. You get a little down sometimes but you seem to pop back up. I seem to have sunk in to some kind of depression where I am always tired, nothing seems to be going right and I truly feel like my life is not my own anymore. I know it sounds selfish with all that Bob is going through but I can't help it. I know that he is going through a lot and I really feel bad for him. I just feel like we've lost a lot with his being sick. He is 40 years old now and was always active and in motion, now he not getting around much at all and it is taking it's toll on everyone. I don't know if I've told you this but I really appreciate and enjoy talking to you. You truly lift my spirits most of the time. You have definitely kept me from feeling alone in all of this. I wish there was some way that I could repay you for what you are doing for me. Talking to you touches my heart more than you will ever know. I'm glad to hear that you got an operator that wasn't on an ego trip and didn't mind doing some footwork to find out what was going on with your husband's certificate. $500.00 is not a lot but it definitely helps. I had no idea that braces cost as much as they do. At this point, they aren't even affordable to us. I would surely need to be on a lifetime payment plan. Things financially are getting tight around here. We have so much stuff that still needs to be taken care of around here. I need to get the brakes fixed on my car which will cost $500+ dollars. I just had to pay Kiersten's registration fee and am stil paying to complete the house. How are you and your family doing? I hope and pray that all is well with you and your family. In a previous email, I sent you my user id if you attach that to hotmail.com we can talk direct. I am making a promise now that now matter what is going on I will get on my computer for an hour a day so we can chat. Peace and Blessings, Janeen PS. Stay strong and encouraged. Inazone2 Tue, 22 Aug 2006 00:00:00 GMT Dear Janeen, Hello there ,do you know, that your message came to me three times . Your I.D. information has been deleted by the message board for your protection, so I don't know how to MSN to each other. Any way you sound like you are at the end of your emotional tether. The only thing I will suggest for you to try, is to only deal with the absolute important thing that you can cope with leave the other things for another day, If you have any -one at all to help they say a problem shared is a problem halved, when I broke down at the hospital once the Doctor took me aside and asked me everything that is going on at home and he really tried to get me all the help be could. He got someone to write to people and tell them about our circumstances, and he arranged for a social worker to help us getting our house forms organised,so maybe there is some type of organisation to help you both through the hard stuff. Do you have something like legal aide over there so you can try to resolve your house contractor problems I really feel for you I can't imagine the pressure that is weighing you down , do you have well meaning friends telling you that it will make you stronger I just wanted to scream at them to be quiet because it didn't help . Yesterday I had to take Victoria to the hospital to see the diabetes dietitian and I met up with the social worker who was helping john through the chemo treatments and we had a really long talk and of course I had a really long cry. I never expected such a hard felt reaction to going back to the hospital, but I have to go there a lot now so I will have to deal with my emotions inside my head or it will be too much for Victoria to cope with. My son has had three cases of toncilitus in the last month so now he has to see an E.N.T. Doctor so he can go on the waiting list to have them removed, just another thing to deal with, and the other day my eldest doughter said that she has had toncilitus as well, but she is 19 so she can organise her own hospital waiting list if she needs to have them out. until next we chat, regards, Debbie xxx Debluc Wed, 23 Aug 2006 00:00:00 GMT Hey Debbie, I hope all is well with your family. How is your daughter doing? We are preparing for Kiersten to start school. She is so excited to go to the 10th grade. I feel a little better, we are nearing the completion of the house. I am still very tired as I am running back and forth to take care of both houses and working. I tell you stress is a killer. I'm really glad to hear that the hospital out there has resources that can help you. I'm not really sure what they offer here. I try to be strong and do a lot of things for myself. I have several friends that offer to help me do things but never show up. I think they feel like they have done enough just by offering. I need to go to the doctor myself now. Lately, I've been experiencing off and on abdominal cramps and have no idea why. I'm sure it's nothing, probably stress but I probably should take it out anyway. Kiersten's diabetes is being managed ok. We will meet with the doctor and dietician next month to see how things are going. I am running out again to check on the other house. I'll send another message this evening. Talk to you soon. Janeen Inazone2 Tue, 29 Aug 2006 00:00:00 GMT Dear Janeen, Hello, how are you going, haven't heard for a while and I really hope you and your husband are doing O.K. how is your house going and have you been able to finish all you needed to do to it. Has Kiersten started school yet?. Has she settled in and enjoying it?. I hope she is. Has your husbands condition stablised, or has he gotten worse?, I am only asking to know so I can try to talk to you, I can only help with words, and enormous amounts of understanding. We have had Fathers Day a few weeks ago and it was terrible but we are still here and have survived another special occasion without him. Victorias' birthday, is this Saturday she will be 14, and is very upset as it approaches, but she will have to get through it, the same as we had to.Has your health started to get better, you said that you were having abdominal cramps, I hope it is just stress and not anything serious, even though stress is horrible, it can eventually, be overcome. please let me know how things are even if it is only a few words, remember I can listen to you (so to speak), about anything you need to screem about or complain about I AM HERE FOR YOU. until we speak again, Debbie xxxx Debluc Mon, 18 Sep 2006 00:00:00 GMT Hey Debbie, I'm sure Father's Day was very difficult for you and your children as this is the first one since he has passed. I am very please to hear that you all are still pushing forward even with the sadness that you carry. I really hope your daughter can find some happiness in her birthday because 14 is a really great age for little girls. The last two weeks or three weeks have really been hard. I went to the doctor to have myself checked out and it seems as though I had a urinary track infection and a sinus infection. The doctor put me on antibiotics and I have been on them. As soon as I started to feel a little better, Kiersten got sick (3 days before school started) and ended up in the hospital. Her sugar had gotten out of control for some reason. The children's hospital treated her and then we were finally able to go home. We got home and got her settled and then school started. A few days later, Bob's pain had increased so much, he ended up in the hospital. He was on the extended stay in the hospital. He is out now and back home but not much has changed. Unlike your husband, Bob has become very depressed and it appears that he is starting to give up. He seems to have an intestinal blockage that keeps him in pain because he is unable to use the bathroom which means he is unable to eat and that is driving him crazy. Because his healt is so poor right now he doesn't feel like he can protect his family (if anything were to happen) and that is continued stress for him. Debbie, I don't know what to do anymore. I'm constantly trying to make him feel better and trying to take care of my little lady and it is just stressful. I need to get to the spa because I am in desperate need of a massage. I have a personal question for you... If you can't or don't want to answer, I will definitely understand. How did your husband's cancer affect you personal (intimate) life? My husband and I just had our 2 year anniversary and we were unable to do anything. I think it bothers him a lot that we can't do anything and that doesn't make the situation any better. My daughter asked him the other day if he thought that he was going to get better and he told her no he wouldn't and that makes me really sad that he feel defeated already. Let me know what you think. Janeen Inazone2 Mon, 18 Sep 2006 00:00:00 GMT Dear Janeen, I am so happy to hear from you! Also to hear, that you have been to your Doctor and are getting better. There really isn't anything you can do to help your husbands' state of mind, because the fear of what may happen to him and afterwards to his family, after he is gone cannot be helped with words, he has to come to terms with it on his own and he may never be able to accept the enevitable. Please don't think I am being harsh I am trying to be gentle, I put myself in johns' shoes and I know I would never have been able to deal with the situation. Now to answer your question on intimacy, I don't mind answering because hopfully if there is anyone else who reads these messages and may be helped by anything we discuss then it is a good day.john was diagnosed in April 05 but for about the last two or three years before he found it very hard to get and maintain an erection. Of course we put it down to so many other reasons --age--work--stress--kids--but it never really became a big problem after 21 years of marriage and three children it didn't seem to be important to me as it was to him. importantly though it was one of the main reasons he started to notice that things weren't working as they should have been, urinating ,the pains,and many other symptoms that became very severe, very quickly, anyway because of not being able to--it made him try even more and it was to hard and so the circle began the Doctors said he may have had the cancer for 5 to 10 years before diagnoses and his problems were one of the first symptoms he should of had checked, but how many men would like to say anything of that nature to any one? I found that I couldn't even cuddle him at first because I thought he would get upset and so we just layed there probably thinking the same things. Then when he had to have a SPC inserted (super pubic catheter) I really worried the tube would be knocked and hurt him. Then he became so sick and spent so much time in hospital I really do regret not being able to just hold him and just lay there giving a different type of intimacy. I don't know if this has helped or not. until next we talk Debbie Debluc Tue, 19 Sep 2006 00:00:00 GMT 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 Inazone2 Thu, 21 Sep 2006 00:00:00 GMT 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 Inazone2 Tue, 26 Sep 2006 00:00:00 GMT 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 Debluc Wed, 27 Sep 2006 00:00:00 GMT 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 Inazone2 Mon, 02 Oct 2006 00:00:00 GMT 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 Debluc Sat, 07 Oct 2006 00:00:00 GMT 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 Debluc Wed, 18 Oct 2006 00:00:00 GMT 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 Inazone2 Wed, 18 Oct 2006 00:00:00 GMT 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 Inazone2 Wed, 18 Oct 2006 00:00:00 GMT 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 Schmeeee Fri, 20 Oct 2006 00:00:00 GMT 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, Idgie Sat, 28 Oct 2006 00:00:00 GMT 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 Debluc Fri, 03 Nov 2006 00:00:00 GMT 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 Debluc Fri, 03 Nov 2006 00:00:00 GMT 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 Schmeeee Fri, 03 Nov 2006 00:00:00 GMT 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. Inazone2 Fri, 03 Nov 2006 00:00:00 GMT 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 Debluc Wed, 08 Nov 2006 00:00:00 GMT 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. Debluc Wed, 08 Nov 2006 00:00:00 GMT 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 Inazone2 Wed, 08 Nov 2006 00:00:00 GMT 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 Debluc Wed, 08 Nov 2006 00:00:00 GMT 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 Schmeeee Thu, 09 Nov 2006 00:00:00 GMT 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 Inazone2 Wed, 29 Nov 2006 00:00:00 GMT 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 Inazone2 Wed, 29 Nov 2006 00:00:00 GMT Allison, Thank you so much for responding to me. I really appreciate your kind and thoughtful wishes. I am trying to maintain a small level of strength but it is really difficult. There is so much stuff that needs to be done and I have no clue how to go about getting it all done and maintaining my sanity. Thanks again for your encouraging words. Janeen Inazone2 Wed, 29 Nov 2006 00:00:00 GMT Dear Janeen, Hello there, I hope you are feeling a little bit stronger, physically and mentally, I am so glad you are able to keep on connecting with me. How are you doing? are you still a bit numb and in a foggy daze with all that has happened. Sometimes I am still feeling like it happened yesterday, the emotions are so strong at the moment as it is soon Christmas and it is very hard to pretent to the children that everything is going to be O.K. I think that things are just balancing on the edge at the moment, christmas was John's favourite time of the year he always decorated the outside and I decorated the inside, and my sons' friends used to all come over to see the lights, but it is really hard to try and keep up a tradition that I don't have any heart in. At the shops yesterday I was looking at something for my daughter and I had to go into the ladies rest rooms as I was almost hysterically crying it hit me that hard. So don't worry at all if you can't feel normal or at ease, with yourself or anyone because grief is the worst thing for someone to deal with even with support of family, but if there is some family differences then they should take it away and deal with it later, now is not the time, try and be strong for yourself and your daughter. Are you finding that you are angry all the time, I am the poor kids are really trying my patience and I do know that what they are doing isn't as bad as it seems at the time, but they seem to know at the moment I am vunerable. John gave me a list of things he would like me to do for him, I felt guilty until I was able to complete all things, I feel he gave me the list so that I would have something to focus on for a while because looking back there was nothing important to be done just little odds and ends, Do you have a bubble like image of Bobby that keeps appearing and does it feel unreal as if it hasn't happened? Even now I can still hear his voice telling me something, and when I look he isn't there,. I am told that it is a normal occurance and will stop when the haze clears and you can accept the unacceptable, it has stopped a great deal, so it must be true. I will check the message board every couple of days as I find a great comfort from you, I have been emailing someone from Oregon he has a web site prostate support group called Man to Man his name is Bob maybe we can give MSN details happening through him . All my love and best wishes to you and Kiersten, until next we talk Debbie Debluc Wed, 29 Nov 2006 00:00:00 GMT Hey Debbie, I'm sorry it has been so long since I have responded.  I really missed talking to you.  We have been trying to hang in there.  It has been really difficult for both Kiersten and myself.  The holidays were particularly difficult.  I wish that we had some of the resources here that you have there.  I am now looking in to a grief counselor and support group for Kiersten and myself.  I have been so concerned about her that I don't actually think that I have really greaved myself.  The problem for me is that there is so much stuff that needs to be done and I was having so many problems with my in-laws.  Unfortunately, they are not very good people.  They are very materialistic and I haven't heard from them since Thanksgiving.  Dealing with this is really hard for me.  I miss him so much.  Nothing seems the same for me anymore and I am extremely lonely.  Although my friends do call and check on me it is really not the same.  I went back to work and that wasn't easy.  I seem to only want to lay around and sleep.  Some days I have no desire to get out of the bed so I absolutely know what you mean when you said you seem to be walking around in a daze.  I am working on our bills now, trying to get things caught up.  I must say that this is one task that I don't miss.  Anyway, Bob's death has taken a real toll on me physically and mentally so I will probably spend some time with the grief counselor as well.How are things for you and your family?  I'm sure the holidays are difficult for all of you as they are for me.  How do you handle being lonely?  I know that you and John were married for much longer than Bob and I and I seriously don't know how to handle things sometimes.Again, I'm sorry for the delayed response.  Please respond when you have a minute.Janeen   Inazone2 Thu, 28 Dec 2006 00:00:00 GMT Hey Debbie, Just checking in with you.  I sent a message a while ago but haven't received a response yet.  I hope all is well with you and your family.  Kiersten just recently got out of the hospital, her sugar got out of control and landed her in ICU.Please me know that you and your family are ok. Sincerely,Janeen Inazone2 Tue, 16 Jan 2007 00:00:00 GMT