i Feel Lost Sometimes

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

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

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

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

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

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

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

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

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

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