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So lost, so terrified

Baygirl66
Posts: 2
Joined: Apr 2009

My Mother was diagnosed with nsclc in August '08 and that's when my life as I knew it ceased to exist. She is 70 years old and her cancer had already spread outside the lungs by the time they were ready to do radiation. She was in a clinical trial designed for the elderly due to her frail condition and was taken off of that because she couldn't tolerate the chemo. Her oncologist put her on a chemo break with just Avastin and she was almost her old self again. Then they did another PET scan and he said it had spread but not to worry. He put her on Taxotere and she did that for 2 weeks and nosedived. She was on Dilaudid for pain and it made her hallucinate. He knew this but failed to act on it. We were due to see him to discuss/demand that he make a change in her meds and the morning before she fell and broke her hip. The day of her surgery he showed up at the hospital and said he was stopping all chemo and was initiating comfort measures only. He told my sister (who lives out of state) that she had weeks to live. My sister dropped everything and flew down here (FL). He then said she probably had 6 months to live. He told my mother, while she was alone in her room the day after surgery, that he was stopping chemo. Needless to say we were in shock from all of this. Perhaps the most shocking was when I met up with him at the elevator and he laughed (yes laughed) and said "That's not even the hip she has the cancer in!" During this time he revealed to us that her cancer had spread to 6cm in her lungs, had spread to her adrenal gland, and her right hip. Her primary physician set her up for rehab and gave her a ball park of a minimum of 2 weeks and max of 6-8 weeks before she could come home. An ortho doc backed this up. Her oncologist told her (after this) that she'd be out in a week. These are just a few examples of what we've had to deal with regarding the inappropriateness of her oncologist while she's been under his care. My Mom is my best friend and we've always been extremely close. This whole saga is tearing me apart. I'm already under the care of a psychiatrist for Major Depression and severe anxiety (I had a nervous breakdown roughly 10 years ago). I know I have to stay strong, cherish the time left and all the those things people say and I'm doing my best to do that. I never let my Mom see me "lose it". Sometimes I have to leave her room and find a place to have my meltdown. Other times I make it home and then I really lose it. I've never experienced this kind of pain before. If I did, my Mom would be who I would talk to. People (and God bless them for it) ask about her but they want the abbreviated version and certainly don't know what to do if I start to cry and get hysterical. Heaven only knows what strangers think when they see me walking my dog with tears streaming down my face. I'm crying as I write this. Maybe nobody will read it but I had to write it anyway. I can't listen to the radio because I'm afraid of certain songs that will trigger me. Movies that I will never watch again. Her condition right now is as such that she doesn't even recognize me and that pierces my heart. I hate this disease! I feel like it's already taken her because I haven't seen "her" since before she got sick. She has chemo brain and we won't know if it's actually spread to the brain because her oncologist doesn't see the point in doing more scans. Another quote (given to us when we heard how it had spread) "It's stage IV. There is no stage V so what do you want?" Perhaps this is the most important (and selfish) thing I have to write, the only thing that comforts me, that makes me feel like I can handle the loss when it comes.....is to not handle it at all. When I think about taking my own life when her's ends, I feel at peace. I know it's wrong but right now it's what keeps me going. Sorry for the long read.

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

Dear Baygirl,

I am so sorry for your pain and your mom's pain, as well. I wish that I could say something to make it all right but I can't. I can only tell you that your mom needs you now, even if she has chemo-brain. I, too, have chemo-brain at times but, my family and the people here are the only reasons that I have made it through all of the difficult and painful surgeries and chemo ( I am a stage 4 melanoma survivor). Please do your best to keep up with your psychiatric appointments and medications- your mom needs you now, more than ever!
I can only believe that if you did something to hurt yourself, your whole family would be in even more pain. So, please, for everyone's sake, take the time to think through your actions and believe that you have support and friendship at home and here with us. The people on this site are giving, loving and trusted friends, who will help you in any way possible. Your life matters both to your family and to us. I understand that the pain and frustration you are feeling now are a terrible burden; one that you should never have to experience. But life does give us some painful and difficult experiences so that we may be able to help those around us. There will come a day when a family member or friend will need your advice or support, so please be there for them.
If you feel like talking to a social worker, anytime- day or night, you can go to www.cancercare.org and they will help you. There are so many caring people here, too, who will listen and try to get you through these rough days. Many of us have been in your shoes.
So, please, take care of yourself and take advantage of the folks here and at cancercare, who are more than willing to listen.
with much love and concern
Hollyberry

Eil4186's picture
Eil4186
Posts: 967
Joined: Dec 2007

Dear Baygirl, I am so, so sorry for all you are going through and that your Mom is so very sick. I will be praying for you and her, that God will give you both the strength to endure this. Please be certain to take your meds. and try to eat and do whatever you need to get some sleep at night. I will be thinking of you. Eil

green50
Posts: 318
Joined: Feb 2008

Baygirl I remember chatting with you and you seem a very nice person. I am so sorry for what you are going thru. I too as well as others put down into words here and it helps to get a response from others for positive encouragement. Hollyberry is right others will need your advice and support. And of course you can lean on others including all of us. I wish we could be there to give you A Big Hug. Dealing with this awful disease is hard. Remember our experiences help teach others and give support. We all live and we all pass on. Your mom would want you to do your best and be here for others. I took care of my husband until he passed and yes its hard but I was thankful I was there. I did take breaks of course fighting cancer myself I leaned on my sons and family and friends. Get what memories you can of helping mom but also take care of you. I have chemo brain and its doesnt mean you don't realize or understand things its just that your in a fog and sometimes you don't respond quickly or remember things right away and your thinking. She knows your there helping her and she loves you. And if she takes her wings she will be looking over you with a smile. Be proud that you are there with her helping. God Bless
Prayers and Hugs as Always
Sandy

Cindy54's picture
Cindy54
Posts: 454
Joined: Aug 2006

Baygirl...How well I can relate to you. I took care of my Mom with ovarian for 18 months. My heart broke until I felt like I had no heart left.

Remind yourself that your Mom is still there on the inside and loves you. The meds and the disease are what is doing the reacting. As for her doctor...well, that steams me. If there was any other way to change doctors could you? His comments are truly not professional.

Please try to get some rest, stay on your meds and keep talking ....to anyone who will listen. Vent here if you have to. Your Mom needs you. And so do we and all the people who can benefit from all the knowledge that you are gaining by going through all that you are.

I hope to chat with you again, please keep posting. BIG hugs to you...Cindy

tonybear
Posts: 92
Joined: Mar 2009

i had cancer and was in the hospital for 2 months. my wife was my caregiver and was there by my side through it all. the hopsital staff and myself had to convince her that if she didn't take care of herself she would get fatigued and would fall apart. you need to look after yourself in order to assist your mother. don't miss your appointments, don't miss your medications. don't miss your meals. as much as i needed my wifes help, if she didn't take the time to maintain herself she would break down physically, spirtually and mentally. you are a human and we all need our breaks, our rest and time to recover. i work on machines and even though they are machines, they need to be shut down occassionaly for maintenance or they will eventually literally fall apart. take care of yourself baygirl. i found this is a good place to vent or ask for help. ths doctors treat, the nurses give care, but here you are talking to those are experinced in the fight from the inside. tony

Baygirl66
Posts: 2
Joined: Apr 2009

I'm so thankful for the support I've received in the very short time I've spent here. Between the chats and the posts you've all made me feel like I'm not alone. Of course I have my family but it helps to have people outside of the personal trauma lend a helping hand. Tomorrow my Dad and I have to meet with Hospice. Today we were told that my Mom's condition is declining. This turn of events will no doubt be trying to say the least. I've decided to put my anger (at the disease and her oncologist) aside and put my efforts into creating memories that will be untainted by negative feelings. This may be a tall order but I'm going to give it my best shot. I've been in touch with my psychiatrist and she will be following me closely. Thank you again for being so selfless and kind.

God Bless
Kim

dgb1960
Posts: 7
Joined: Apr 2009

Baygirl,
My 12 year old daughter was diagnosed 2 weeks ago with a very rare form of ovarian cancer that happens to young girls. She had surgery to remove a giant tumor that had engulfed her ovary. How I wish this was happening to me instead of her!!! I never left the hospital while she recovered for 5 days. When we finally came home I was emotionally and physically exhausted. I ended up coming down with the flu for a week and felt so horrible that my poor daught3er had to help me out by getting me food and drink. I'm finally feeling better but my heart is absolutely breaking. We have a post op appt for 5/13 but I called today and said I absolutely cannot wait another day to find out the results of all the biopsies and to learn what the next step regarding treatment is. With luck, we will just watch and see, as these types of tumors recur. More likely, she will start chemo. I know I need to be strong - I made the appt for tomorrow and have told nobody - not even my husband because I need a chance to hear the news and process it alone. Then I willl be able to tell my husband, who is also devastated by these recent events. My advice to you is to keep posting your feelings on these sites. The more you talk about your feelings, the better it is for you. If you try to hold them in, they will come out one way or another such as anger or illness. I would not hesitate to write the doctor a note and tell him exactly how his thoughtless remarks hurt you. I feel that since they see death and dying everyday they forget that we DO NOT and may feel our world's are crumbling. I remember when my dad had hospice at our house. Towards the end of his life he was so sick and in such pain and seemed out of his mind due to the cancer that had reached his brain. When he passed away, I was actually grateful that he had gone to a better place. I knew it was selfish of me to want to keep him in this world, but I knew that letting go would mean peace for him. Please don't think of harming yourself. Your mother will be watching you from whatever realm exists ( I call it Heaven) and she will not be happy at all if you did something drastic. you WILL be with her again. You have more to contribute here on Earth before your turn is up. See, you helped me out just by allowing me to respond to your thoughts. We can all help each other. I can't help but envy the cultures that celebrate the passing of a loved one as a joyous event. I will pray for you and your mom.
Peace,
Diane

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Hi Baygirl, First let me just give you a big cyber hug. I am so sorry for all you are going through and as a 20 year survivor of NHL cancer I can certainly empathize with you for every bit you wrote, I have seen it all as well as many of us have on this site. You are not alone, you need to know that right off the top, all on this site have been through what you are going through - either from a survivor point of view and certainly there are many wonderful caregivers like yourself who have been there as well. I lost my Mum a few years back and she was my best friend too. I didn't have a chance to say goodbye though because she went very quickly and I was too far away so at the very least, hard as it is for you to watch her as she is, you really need to try and take advantage of every moment that you have left with her. I can only imagin how hard it must be but later you will be glad you did I'm sure.

There are many many fine and caring doctors but there sure are the insensitive ones as well, as you seem to have seen in spades. I too have had my share of those who are flippant and seemingly uncaring, just as in any other profession I guess - the good the bad and the ugly. Try and stay focused on what is important and that is you and your Mum. There are so many stages of grief and all are okay to go through, anger, why her, denial etc etc but the important thing is not to get stuck in any one of the stages for too long. I am glad you have a mental health care professional working with you - we all, I truly believe, need to touch bases with one now and again in the cancer journey no matter what our role as survivor or caregiver - traumatic incidents need that extra help now and then so you are doing the right thing there, absolutely.

I worry about your talk of suicide and hope that you have told this to your psychiatrist so that he/she knows where you are in it all. It sounds like you have had a wonderful relationship with your Mum and many do not have even that so try and focus, when you can, on all the good times and feel the blessing of that relationship you were so lucky to have. You know even though you see her not recognizing you right now I have always believed that on some deeper level they do know who their loved ones are, if only in a feeling, I think it's a bond that can never be broken. Just my way of looking at it.

When you are feeling really down come on this site and write, as you did above, and that will absolutely help you through as you will get out your true feelings to those who really understand you, ones who have been through it before. There is also a chatroom on this site if you want immediate feedback and if you can't get to your psychiatrist when you need to there is also a telephone number that you can call through the American Cancer Society where they have cancer specialists who can hook you up with phone numbers directly to many areas on information about the cancer experience including a suicide hotline. The number is 1-800-227-2345 and that's 24/7. If you want to talk directly to a suicide hotline counsellor call that number and tell them right away who you need and they will give you the direct number. Maybe call and get the direct number now and then keep it handy in case you get into trouble so you don't need to find it when you are most upset. Sorry I don't have the direct number anymore for some reason.

Life is worth living, I have many side effects from the treatment that keep me down and my life was never the same after treatment but it makes no sense to leave without using all you have learned from this to maybe help others who are going through the same thing or for some other reason you might have or are yet to realize. I am certain that your Mother would be so saddened that she caused this pain to you and would certainly have the wish that you would cherish your memories you had with her and go on with your life in a healthy way. Right? Right.

I know it seems like this pain you are experiencing will last forever but time does really help heal the spirit. Please seek the help you need when you need it, on here where you will find instant understanding friends, with your psychiatrist and with your friends. Most want the 'abbreviated form' as you called it, mine sure did and still do, but with this site that I found you now have somewhere to vent and be understood and validated.

Again, I am so sorry for your current situation BUT YOU ARE NOT ALONE. Hugs, Blueroses.

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