What about the kids? Husband?

I'm sitting here not wondering what I should or should not be doing medically with my illness but feeling as if I am not doing nearly enough to support my kids and husband. My kids, a 10 and 14 year old are smart, sensitive and tough. My husband suffers from his own illness, severe depression. What about them? I feel as though I am failing them... they need help with this (all have support in therapists, etc.) but what about their needs? I believe that loving someone with cancer in some ways is much much harder than living it. Does this make sense? I'm tired, worried, fed up and sick of walking this tightrope. But, I suspect my kids and husband have to be feeling this, too. They don't have the luxury of a team of doctors to check things out. We all have each other on this board, but I'm afraid that there are lots and lots of people behind us that suffer in silence. Do any of you have suggestions about ways to help our families? I'm the 'strong one' in our family. What happens if I don't make it? This keeps me up some nights, believe me.

Sorry to vent. I'm just fed up!

Rose,
I know how you're feeling, I've had the same thoughts and worries also. You have to be honest with those you love, and tell them how you're feeling, then they will feel they have "permission" to talk about their fears also. Don't worry about trying to solve anything, just have a good cry together, and you'll go a long way towards healing.
Hugs, Lolly

I know what you are going through. My daughter now 14 has been with me all through this since 1998, she was the first to look at my surgery scar, a radical mastectomy, and she said it's not too bad. She and her dad have always said we will get through this, and of course "I say I know". The other day she asked me if I was scared of dieing, I burst out crying, no I am not scared of dieing I am scared for my family having to live without me. My husband and one son do not read and write I have always helped them out to save embarrasment, we have tried everything with tutors etc but it won't stick but both good with their hands, they also get frustrated with their selves, so each time I have been in hospital my daughter has had to do it for them, banking bills all the things that get taken care of by us. A lot for her young shoulders. When I logged onto my e-mail it opened to a letter she had sent her school counsellor, I shouldn't read it but how could I not, so I ended up crying as she was able to tell her everything but said she didn't know how to talk to me about it, she always wants to be positive with me, she told the counsellor how my uncle had just passed away with Cancer, he had radiation at the same time as me, mine finished on the 19th February, it had been so sudden but drawn out as he wanted to stay at home, and deep down I believed the same could happen to me and they wouldn't be prepared. I am taking her to a nutritionilst because she admits she eats like a horse and we have to agree, and all related to depression, she is on anti-depressants already, her grandfather died last year and both adored each other, so when dad died my mum did the rounds staying with the family and of course as time went on they locked horns and she wasn't game to grieve at home because it would upset my mum so she cried at school a lot, hence the counsellor. Then she started getting upset with us if we didn't put things back in the right place in the cupboards or fridge where she had put them. She has had to deal with more in the last few years than any child should have to endure, but we know first hand that our kids are grieving before... I don't even want to say it. I didn't really know anyone with cancer until I got it and I am 50 this year. In an act of fate, my husband's niece 21 has come to live with us from New Zealand, she is a carpenter and enjoys hard work so my husband can get motivated again doing our renovations and landscaping. She also grew up quick so she is having fun mucking around with my daughter, but after only one day now my daughter thinks we don't care about her, I got those vibes very quickly. My son keeps everything in he was a loving infant but now he is guarded and I only get a glimpse of the little boy now and again. The only way to fix this is to GET CURED, so ladies with all our networking we will get there. Now I have dumped all this on you and the other ladies, if anyone has any suggestions we are all ears.

Big Hugs

Lyn

I totally relate to these women whom the family depends on.
Over a period of years during the late 80's and 90's it became my role to be caretaker of all the elderly Grande Dames on both sides of our family. My mother-in-law died in our home. I had to run hospices from one end of the country to the other. ("YOU know how to do this - please come and help.")
SO, when it looked like MY life was threatened, this was a big shock to everyone. They hardly knew how to respond to my situation. I was the LAST person anyone expected to have to deal with a very aggressive form of cancer. I did a lot of bulk e-mailing with details of my progress and how I was doing. This would clear the air and I would get many responses. It seems people (yes, even close family) are afraid to ask, so when they were reached out to they felt more comfortable in coming forward to me. Again - "knowledge is power," and not just for the cancer patient.
This boils down to forcing an access to a place in anyone that they never go to. When a seemingly strong-in-every-way person brushes closely with death, family and friend's own mortality looms large in their face.
Ancient archetypes are broken, things go upside down - husbands are supposed to die before the wives. Mom's live almost forever. The horrible message for the others is that they will have to go on somehow if we succomb to our disease. Asking my loved ones to help me in my fight in ways that made them feel positive has helped us all. Husbands are difficult not to panic, whether they show it or not. This takes a lot of work on both sides. (Feeling more fatigue, a new pain can send them into a tizzy.)
Fortunately, I was pretty independant and still was able to do things with the grandsons who got used to a grandma who wore a scarf or hat all the time for over 2 years. They lost their other grandpa to lung cancer at the age of 62 around the time of my dx, and were VERY afraid for me.
Periods of feeling worn down are normal, and should be used as a chance for hunkering down and gathering strength again. This is when you ask for a little more help and peace and quiet, with the emphasis that you are not getting worse, just need a chance to recoup a little. Hopefully, all will understand.
While in the thick of the battle, it is hard to see a successful finish, but it is there. Do something nice for yourself, and tell the others that this is their "gift" to your healing.

It is good to be able to share our feelings and not be judged. I can appreciate everything you all have said. I was 54 when Dx. now 57. My husband suffers with deep depression and that is hard on everyone. When we are the focus it makes them feel no one cares for them. My husband has had major shoulder surgery, 2 back surgeries and is facing knee surgery next week during the 3 years I have been in/out mostly in treatment. We have had to depend on friends so much. Some days we lived on a wing and a prayer. Our son is now 25 bought a house and moved out when I got Dx. and didn't know how to deal with both of us being ill. He feels life has not been fair to us. He would drive in the driveway and call on his cell phone so I could put my wig on before he came into the house. He told me he never wanted to see my with no hair, or be ill and never has. I worked in a hospital for 25 years and saw way too many people that went through cancer and didn't make it. I wasn't scared of dying but how long and hard would the journey be getting there and leaving my hubby and son behind to fin for themselves. I have lots to be thankful and that is how I have to look at it. I didn't expect to still be here now but I am and doing pretty much what I want. I believe this will be the hardest journey we will ever travel. It has made me slow down and smell the flowers and appreciate life in a different way. As far as for the family we need to stay close to them. A doctor told me to keep them close by calling my son every day or few days, if he doesn't call, ask him to go to lunch with me, invite him out for a meal don't let him stay away. Ask my hubby to do things for me as it makes him feel wanted and is helping out. He hangs out and takes in the clothes, does the stirring if I am cooking to save my lymphedema arm. When he asks me to go with him I try to go even if I don't feel up to it but then if I am tired or not feel up to par I tell him I will go but we have to make it a short ride or visit. That has helped me and them both. When the children are living in the home then its do things with them. We are both on disability and that was hard to deal with but we didn't ask to be on it so why feel guilty. We worked all our lives but wasn't able to do it until we were 65. Prayer and my Christian friends have helped me so much. I do volunteer work and some times its only calling another cancer patient and listen to them they brighen my day and I do the same for them. Some day we will have a new body and this one will be gone. I hope this has not be boring and will help some of you. Hugs, Sandy

Dear Rose,

As a son and caregiver of a HER-2 positive breast cancer patient (i.e., my mom), I found Steph's advice truly wise and her words nearly perfect. My thoughts and prayers are with you.

Paul

Thanks, Paul,
As advocate and helper to your mother, you know what I have spent years dealing with. I took it all in stride and that is all the more reason that the family was befuddled as to what to do for/with me.
When all else is looking dark, call upon your ancestors - they will come and give you a hand.

I know how all of you feel. As a nurse, everyone looks to me for the "answers." I am stage IV with mets to liver. It is hard to be objective and have answers when it is your own disease. I agree that the people who love you have a harder time dealing with all of this then the person who has cancer. I know it hurt my kids to see the Chemo get me so down. I lost my hair, my fingernails and for a while the ability to walk. I still struggle with tiredness and walking for any length of time.
My Dad committed suicide in Dec. He was not depressed, no signs of doing anything like this. My Dad and I were very close, he was 84. Imagine how it hurt when someone said ( at his funeral ) He knows how sick you are and he knew he could not take care of you! You talk about added saddness and guilt. I find myself telling my husband " I am sorry." because I have to walk so slow and cannot do the things that we used to do. He says he does not care, and he has been so good to me, as have my kids, but it is hard not to be able to do what you want or what they want. I hate this disease....and never knowing how long or what is next is so very hard. I am only 51 and should be able to do so much more. Iwant to see my Grandchildren not here yet and see my Grandaughter grow up. Then I tell myself that I need to stop feeling this way and thank God for everyday I am here
Thanks for letting me vent
Sherry

I have to agree with you, last year my dad died 84 and over the last few years he restored his Austin 7 with the help of my mum of course, so I figure if he could keep that going we certainly can keep restoring ourselves, I told my Onc I was getting younger (50 this year) because we keep killing off all the old cells and I am getting new ones, I have been doing this since 1998 and was given 2-3years at best, I just keep having trouble with the lymph glands and hoping the one that is being treated now is the mother of them all and I will be able to get my new life back. Bye the way, my dad passed away June last year, massive heart attack, he would not stop eating his 2 chocolate eclairs for lunch, boxes of chocolates and loved his muffins with capaccuino, he must have know someting. He and my mum used to make up my ESSIAC tea for me and proudly told everyone he had cured me, still don't understand what he thought I was doing when I dropped by after chemo for lunch, well I have another angel on my shoulder now. To make matters worse his brother passed away in March this year, cancer, he just finished radiation when I did in February, said he felt like a race horse but his was a melonoma and he was gone 3 weeks later and I have another angel on my side.

Love & Hugs Lyn