Don't know how much longer I can go on like this

I can't believe I'm actually posting on here.   I've been reading different topics on healingwell but today I just feel like I need help and like I can't keep up with my life the way it is. 

I'm 37 years old, married, have stepchildren ages 16 and 18, and 2 year old twins.   My husband is really wonderful and a great source of support but it frustrates him when he can't help me feel better.   I was diagnosed with clinical depression 14 years ago and have been on & off meds for that long.    Currently taking Wellbutrin XL and lexapro and don't feel like they are working any more, but don't have the time/energy to get myself to a psychiatrist.

My biggest concerns are my twins...  a boy named Kyle and girl named Taylor Grace.   I had a healthy pregancy and they were born at 37 weeks... both weighed 6 1/2 pounds!   Kyle was diagnosed with Cystic Fibrosis at 10 weeks of age.   It was such a shock since we had no family history and didn't know we were CF carriers.   We felt like we were just getting a handle on his diet and treatment and meds.... then Taylor was diagnosed with Bilateral Retinoblastoma when she was 9 months old  (cancer in both eyes)

Our son sees a Dr. at a childrens hospital in Utah where we live.   Our daughter gets treatment from a specialist in Los Angeles, CA.   We initially were going every 3-4 weeks to Los Angeles.... It is now every 6 weeks.   She responded well to chemo and it killed the tumors, and she still has both eyes even though probably no vision in her left eye.   After 6 months of being cancer free, it came back.   A series of 3 laser treatments will hopefully kill the new cancer cells... next week we go for the third laser.

On top of that, my older sister has stage IV colon cancer which spread to her liver.  She had 12 rounds of chemo and her liver cancer responded well, but the colon cancer did not.   Just found out she will be having surgery soon to remove a section of her colon then start chemo over again.

I can't stand all the sickness around me!   I try so hard to be positive but it is emotionally draining.   I want to cry but the antidepressants make me feel numb.   I've tried going off the lexapro but then I get so emotional that I can't function.  I have to function to be able to take care of my family and work full time, because having my own breakdown isn't an option. 

I hate cancer.   I have lost friends to cancer and it makes me so angry.   Why my sister?   I don't think she will survive this for an extended length of time.  The prognosis is dim, and she is only 48 years old with so many years she should have ahead of her. 

My children need a strong mother, a positive mother, and I strive to be those things.   But when I have my days off with them, as soon as they go down for a nap I go to sleep.   There are so many things I need to do but I just want to sleep.   I want to take better care of myself but don't have the time or energy.

Because my husband and I both need to work (for the income as well as having the kids covered by two policies) we rarely have time together.   We both work ten hour shifts... He is off for 3 days a week, I'm off for 3 days a week and we have a neighbor that babysits one day a week when we are both at work.   Basically we see each other in the evenings when we are both exhausted and stressed out, and the kids are crying and we're trying to feed them and do Kyle's breathing treatments and medications and get them to bed.

What can I do?  I love and want my children very much, but feel very trapped by their needs.   I will do anything to help them live long, happy lives.   I know Kyle will get sicker when he is older, and Taylor has a higher risk of getting other types of cancer as she gets older.   People keep telling me that things will get better as they get older (especially out of the 2-3 year old range) but I don't know if it's true.  

  

I feel guilty when I am overwhelmed because I know there are others with much worse problems.   I see children in the hospitals that never leave and who die.   I just need to be strong and face my problems as best I can.   I just feel like I could be living my life better, and be happier, but I feel that I just can't do anymore than I am right now.

Diana

 

Dear Kyle's Mom,

Welcome to Healing Well.  I am so sorry that you have so much to deal with.  You are right, lots of people have big problems but I think yours is the one we need to work  with today.

I can understand why you hate Cancer..........I hate it too for my own reasons.  It takes a special Mother to care for these special children and you are that  Mother.  You need support both physical and emotional.

I agree that you must be physically exhausted by days end. You have to put yourself first here and take care of you.  A healthy diet will give you energy and can you get in some short bouts of regular exercise.

I think you need your meds but perhaps they can be tweaked so if you can just make an appointment and go, the benefit may well be worth it.

How about respite care?  I do not know what is offered in your city but you sure could use some. You and your husband. Even if there is a service that would give you some time for you.  Do you have a social worker for the children that might be able to help you get resources.  The American Cancer Society may have help for you.

I cannot say I understand just what your going through but I do support you and please take the time to keep posting.

Gentle Hugs and prayers for all of you including your sister.

Oh, Diana!

I can't even begin to imagine how much you are struggling, this must be getting you down so much, and I can understand how emotional draining this must be.
Coping with a child with CF alone can be a huge struggle and time consuming. Too add everything else in, I can't even imagine to be honest.

Pretty soon, in a year or so, Kyle will be able to do his own physio treatments. It does depend on how quickly he grasps them though. I think it's about 5 now, when they start teaching children to take there own medications. The people have told you it won't be for much longer are right, as Kyle starts to learn to take control of his own care, kids are fast learners, and soon everything will seem like second nature for him.
The good news is, is that you do have a CF team, and put your faith in them, and they will do there best to guide you forward in the best ways too cope. Lean on them lots, as they will completely understand your worries and concerns.

In all honesty, I don't know that much about cancer. If it was me, I'd be freaking out and running circles round the place screaming, as I would have no idea at all how to deal with it. You're doing well in how you are holding things together. I'm certainly proud of you, as it sounds like you have a load to deal with.

Try and fit in an hour of free time to yourself. Sit your hubby down in front of the TV, sit the kids on the floor with a few toys. Have a really hot bath, and give yourself time just to collect your thoughts, and relax. Maybe put on some calming music, or the radio.
Or have the bath, while they have naptime.
If you sleep, your not going to be relaxed, your still going to be worrying about things. But in a bath you have the scent of the bubble bath, and the heat from the steam, and you can think about things in a relaxed atmosphere.
I know you may have other things that need doing. But, if you don't take a little bit of time to look after yourself (even 20 minutes) then everythings going to seem like one big cycle of being busy and in a rush.

I can't imagine not having the NHS, as they just pay for absolutely verything, no matter what medical treatment you need. I know for a single lung transplant in the US is about $20,000 (this info is from a friend in the states who was trying to raise funds.) I couldn't imagine having to pay for things like IV treatment, as it's just something we get. I've been told that a week of IV's can cost around £2,000 over here. I couldn't even imagine having to have those funds, and not having the benefit systems we have over here. I know you can have insurance policies and things, but i have no clue how much they cost, or even to what extent they cover.

I hope some of this is of help. And no worries about posting on here huni, post all you need to you, we'll be here to support you whenever you need it.
If you just want a general chat sometimes, my email should be visable under my name I think.

Massive hugs
Gem

Kyle's Mom
I have no other advice than what has been given. They have given you excellent ideas that is for sure.
I just wanted to welcome you to the forum,and to tell you that we will be here whenever you need us.
I can't imagine what you are going through. But I will say that after reading your post,you and your husband are very very strong people,and will be able to get through whatever life throws at you.


Please stay strong and keep us posted.

Shy

 Don't feel guilty - you are amazing! Coping with the load you have is incredulous - you inspire me. Here I am feeling stressed about being on holiday for my kids for 6 weeks and I have NO problems like yours - thank-you for sharing your feelings and I am sending you caring big hugs for helping me! See - you are truly amazing!

Just want to say thanks to all who posted.   I go back and read what all of you said and it helps give me a boost.   We did get good news last week, my daughter's cancer seems to be under control right now.   We don't have to go back to her Dr. for 2 whole months!!!

I'm trying to do some good things for myself.   Yesterday and today I did exercise... ok only 10-12 minutes but it's a start!?!    Trying to eat better and also get more control of our finances, etc.  

To Darkies Gem:   All your recommendations about Kyle's diet were great.   We're doing all of them now, in fact his Dr. had us start him on scandishakes when he was 18 months old.   He gets at least one a day, and we also mix scandical powder into anything that he will tolerate.   I think as he gets older his appetite will get better.  Toddlers are really weird, eating nothing for a couple meals then having a large one later.    He is doing well though, I take him in to be weighed tomorrow and I'm excited because I think he has gained since a month ago.

I am doing much better than the day I initially posted....that was a day that I was really down.   Thanks to everyone on HealingWell, this is really a great forum.

Diana - (Kyle'sMom)

Hi there,

Im so glad to hear that your daughters cancer is under control now and that you are making progress with Kyle as well. Be sure to keep us up to date with how you are getting on.

Best Wishes

Darren