i Feel Lost Sometimes

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

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.

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

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

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.

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

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

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

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

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