Mom switched to palliative care... feeling lost

[bohojack]

It's been a while since I've been on, I'm not sure if anyone remembers me. I joined up last year while I was pregnant and my mom was diagnosed with cancer. I tried logging in a few times but the site for some reason didn't want to remember my username so I sort of gave up pretty quickly. It's hard to motivate yourself to talk about it if you're used to having to glaze over to go on with everyday life.

Since my last visit, mom's tumor in her lung shrank by about 50%, and is still shrinking... this is the good news but it seems there is so often so much more bad. In early May mom had a seizure and they found a few mets to the brain including one larger one that had caused the seizure. They also discovered a blood clot in her lung which was being treated with heparin injections for a while. The morning she had the seizure was not nice. I had to leave the baby downstairs and ran up hearing her pleading and 'sleep screaming' and begging with the paramedics, trying to run away terrified of them... I've never seen anyone come out of a seizure or have a seizure before so it was very scary for me. Within a few days of being admitted to the hospital after the seizure, she was scheduled for brain surgery to remove the tumor, which was pretty terrifying. Just prior to going in for the surgery, her anesthesiologist was the one to break the news that her treatment had been changed from curative to palliative. It just slipped out and there it was, right before she had to go under the knife for a scary surgery. She came out fine and has healed well, and was talking almost normally within days (aside from reversing genders sometimes)

Since then mom has had a few scans... I don't know what is going on with the blood clot but we were waiting to see if they could do targeted radiation on the brain mets.. we waited a month for them to even scan her again after a 5 day full brain radiation course, and by then she had 9 mets to the brain. We were told that because it had gone over the allowed 3 for her to be elligible for the targeted radiation, there was nothing they could do anymore. That we're on our own now. The man that told my mom this - that basically they are done helping and are ready to leave her to die - told her so on the phone while she was at a restaurant with my dad. She asked him to please wait and she would call him when she wasn't in public but he remarked that he had meetings to get to and it couldn't wait and he'd just tell her now.

From the start of this horrible journey, mom was suspected to have lupus... then she went to one oncologist, who passed her off onto another, who went on sabbatical, so she was passed off to another, who went on vacation, so she was passed off to another, who had a conference to go to.... I'm not even sure if she's seen the same oncologist more than 3 times. The ones she has been able to get in contact with seem to think she is someone else's responsibility. Her info gets lost from one person to the next, she gets bad news by hearing it from nurses and anesthesiologists rather than a doctor.... no one even bothered introducing her to the head nurse at the cancer clinic until about a month ago.

I don't know what to do. Though I suppose there's nothing I can. They're saying she's got 6 - 9 months left. I just had my son, her first grandchild in the family, in January and she's glad to think she'll see his first birthday, the first Christmas, but angry at the thought of not having more. I'm angry at it too. And I don't know why but our relationship has changed... for some reason I find myself less patient with her, less understanding. I feel angry at her but I know I shouldn't and I know it's wrong to behave like that. I just don't really know what the hell to do anymore. I'm 21... with my first child with a man who runs out on me or cheats on me when he gets the chance... my mom is sick... this is my first time as a mom and I'm just trying to glaze over so that I can actually function with my son... I keep thinking, if and when I lose her, then what? She's always been my best friend and confidante. She's always given me advice and helped me figure out where to go and what to do, she's always been the glue for this family. Without her here I'm afraid my dad and brother and I just won't have enough in common to even bother seeing each other. That dad will just disappear travelling to take his mind off things and lose himself, and my brother will just kind of fall away into working and never call... and I'll be completely alone with just me and my son who I don't know the first thing about how to raise him properly to be a good person... how not to screw up, how to deal with things with his dad. I feel like such a lost little kid who depends so much on her mom that even acknowledging the situation is enough to make me panicky... I don't want to lose her, I don't want her to be scared, I don't want to be alone, I don't want her to miss out on so much that she should still be able to see. There are more grandchildren for her someday, there are more adventures for her and my dad to have...

I just feel incredibly lost and isolated. I feel like a child with a child who just wants her mommy, and I have no one to talk to. Because I'm a young mom, most of my friends are at completely different places in their lives. Some are just buying homes or just settling into committed relationships. Most are still out clubbing and partying and just coasting around. I never even see anyone anymore, I don't ever have anyone to talk to other than my dad and brother who I can't seem to communicate with, and my son's dad who's been nothing but trouble for me. I feel like I put on a pretty brave face for the family and the baby but inside I feel myself seizing up like something is breaking and I'm just waiting to collapse when anything happens with mom. The slightest thing gets on my nerves and I want to explode and break everything but I just sit there frozen and don't speak. I don't want to be some crazy wreck of a mother to my son. I don't want to treat my mom any differently... I want her to have peace and joy with her family, not bickering and stupid conflicts... yet I can't seem to even get my head wrapped around anything. I don't have money for counseling and I don't drive to get anywhere for it either.. I'm sorry if this sounds like a big pity post I just don't really know where else to spew anymore...

Love and prayers to everyone. I hope all of you and your families are enjoying happy days and much warmth with one another, and I really sincerely mean that.

[Caren]

My heart is breaking for you, reading your story (((HUGS)))

I am so sorry to hear that your mum is only being offered palliative care. I know that hearing them say this is one of the toughest things to try and digest, for your mum and everyone else involved.

Being so young yourself and having your own baby to cope with is a challenge in itself, without the additional worry about your mum and this is probably why you are feeling angry. You aren't really angry at her, just at the fact that you know that you don't have much time left with her. I know that when they told my dad that he's chances didn't look too great (at diagnosis) that I felt very angry and frustrated with him and I disconnected myself from him for a while, which looking back I believe was my way of preparing myself for when he was no longer with me.

Try not to think too much about the future and concentrate more on the here and now. Tell your mum everyday how much you love her, although I'm sure you do this already. Try to enjoy this time. It will be hard on all of you, I can't tell you differently.

When your mum takes that final journey she will live on in you and your son forever. Whenever you do something for him or with him it will remind you of things that your mum done with you. When you teach him new things that will be your mum teaching him because she was your teacher. Even once she's gone she will still be there guiding you through motherhood and life.

One day at a time is how you have to take things from now on.

We are all here if you need to chat or vent, ok?

Take care of you too!!

[fillise]

I'm sorry you are feeling overwhelmed and angry. It is certainly an understandable response and you never need to apologize around here for being angry, confused and/or scared.

I wonder if you can use some of this time with your mom to make a book or some videos with her motherly advice for you as you raise your son. It might give you a little more security knowing she is leaving you something that will help you in the years to come.

The other thing I found that helped tremendously after my mom's dx was to stop thinking about how little time we might have left. I began to think of everyday we had with her as a gift--something to be thankful for. There will be plenty of time to grieve, but for now I'm grateful for everyday I can pick up the phone and hear her voice or for every visit I can enjoy with her.

Susan

[jaminkw]

I am so sorry for the pain you are having to endure. Picturing you running off to your mom while your son screamed in fear was just heartbreaking. I'm glad you have this site to come to and the gift (it is a gift) of articulating your feelings so well in a post. You would benefit so much to have a counselor, just to be heard and understood face-to-face but since that is not possible, I guess we are the next best thing. Visit here as often and you can and we will try to give you some little measure of what you need.

Love your mom and try to appreciate every day you have with her.

Judy in Key West

[ts]

Please take a little time to look around for no cost counseling services and other assistance. In my city, we have Cancer Lifeline. I've talked to them about insurance issues, but they also have counseling available - al at no cost. I doubt they can help you in Canada, but you might find something there. No one should feel as alone as you do on this journey. It is wonderful that you are aware enough and concerned about being a good Mom and raising a good son. Those are commendable goals to focus upon. We are here to listen, offer whatever we can, but it sounds like you really need some local support too. While the cancer center your Mom goes to doesn't sound too well organized, one place to start asking might be a social worker on staff?

Hugs.

[SandraL]

Well you sure are going through an awful time right now and I am sending you a big hug. You sure could use someone to talk to so please pursue counselling services. There should be some available at the cancer clinic as there are at mine.

You definitely have had an unfortunate string of medical professionals. Sometimes writing a letter helps.

Take it easy on yourself and just do the best you can every day. And try and have as many good moments as you can with your mom.

Take care and keep posting, we are here for you

Sandra

[Patti B]

I am in tears after reading your post. You just have way too much on your plate right now.

I do agree with the others, you have to concentrate on the time you have left with your mom - make some more memories.

You say you are worried about raising your son - please remember that you seem to have had an awesome example in yours to imitate. And your mom will always be by your side, no matter what.

As far as your dad and brother are concerned.......sometimes in each family (and I am that one in mine) there needs to be the person who is the glue who holds everything together. I know these days are tough for you, but maybe you could sit down and explain to them your fears, that you want your son to have a grandpa and uncle in his life, and that you want and NEED your dad and brother to help you through this. Maybe they will step up to the plate. I hope they do.

Please come here whenever you need to vent. You are so young to have to go through all this. I am probably old enough to be your mom (or older) but if you want to PM me, I would love to talk to you.

Please take care and let us know how things are going.

Hugs - Patti B.

[Ellen in PA]

Hi Bohojack.

Re palliative vs. curative, the minute they found your mother's brain met, she became Stage 4, at which stage all treatment is palliative rather than curative. The anesthesiologist may well have assumed you already knew this and didn't realize s/he was breaking any news to you.

Hang in there.

Ellen

[Trawna]

http://www.cancer.ca/Canada-wide/About% ... sc_lang=en

I am so sorry you are going through this experience. I lost my Mom to cancer when my daughter was 2, but at least I had a supportive husband. This must be very diffficult for you! Above is a link to free counselling available in Canada, but if this is not enough I suggest you contact either the Canadian Cancer Society or your local hospital oncology ward who can refer you. Although I have not used their services myself, I have several friends who have and who tell me that it has been exteremely helpful.

Sending you strength and hope

(((Hugs)))

[alyssa0323]

I am so very sorry to hear what you are going through. I want you to know though, that I recently have walked in your shoes, and when I say recently, I mean just four months, almost five months ago. First I want you to believe and know that your son was sent to you as a blessing and he will help you through this. My daughter was only 8 months old when my Mom passed away this past February, and without Rylan, I would have not gone on. I would have never gotten out of bed, I would have never stepped another foot out the door. My mom, like yours, was my entire world...my best friend. My family sounds almost like yours. My dad and I never really got along, my sisters and I - well, just not that much in common either. I am also raising my little girl on my own with a deadbeat father on my hands. Please do whatever you can to spend every moment you can with your mom. I know that it's hard and its hard to keep yourself together when you are with her, but it's important that you never have any regrets. I dont want you to regret not spending as much time as you can with her, and having her spend as much time with her grandson as possible. My mom was diagnosed at Christimas time and was only given two months to try to fight this disease. It was awful and Im still mad as hell at everything and God himself for taking her from me. SHe was my rock and the only one there for me. Please email me any time... even just to vent or for advice (if I can help, I will !!!) I just want you to know that what you are feeling is okay... Its normal to be angry, sad, overwhelmed, etc etc etc...

Remember, your son is going to be your Godsend. I know it's hard right now, but trust me when I say, he will get you through another day. I am praying that a miracle happens and things turn for the better for you and your mom. Please know that I am thinking of you both. Many many hugs.....

[alyssa0323]

Be proud of yourself, thats what "moms" do... We put on a brave happy face for our children and keep it together for them. We have to, it's what we do... You will be a great mom and no matter what, your mom will be with you to guide you the entire way. I believe that.

[bohojack]

Thank you everyone for your kind replies...

I talked to both my mom and dad and mom's set up a counseling appointment for the family through the home-care nurse that visits once a week. I guess they're a grief counselor. I'm not really sure how that works or how it will go - my family has never really all sat down to talk about any one issue, especially something as serious as this. I suppose I just can't picture a counselor being here often enough to make a difference for all of us or to be any help to all of us as individuals.

Some of the stories I read on here are so uplifting, and some so sad. I used to come on here a lot and read people's stories in their signatures to get an idea what a 'typical treatment' looked like only to realize nothing really counted as typical. There have been a few stories about this illness hitting one family member after another that have struck me as particularly sad and depressing.

Both sides of my family have a history with cancer and I can't help but worry and be fearful that my son may go through this same thing when I'm older. Both my grandmothers have had breast cancer, my paternal grandfather and great grandmother died of colon cancer, my mom has lung cancer... there was a cousin of my dad who died at 19 of breast cancer... It's just so horrible, all of it, that I have to remind myself that living fearfully of something I don't have all that much control over is no way to live. Maybe that's selfish, given that it's not me going through it right now. I'm just so terrified of ever having to deal with this with anyone else in my family or my son going through what I am going through... I wish this had never happened to her. I know that goes without saying but... she was never a bad person. If anything she's suffered a great deal and struggled through a lot in her life. A lot of abuse and neglect, a lot of pain and fear... it just seems so wrong and makes me so angry that she's had to bear so much pain throughout her life and has still so much more and not enough joy before she may have to leave. Just echoing the universal sentiment of 'it's not fair,' I guess.

I'm so glad this site exists and that there is someplace to come and receive some support and encouragement. It means a lot. Just to be able to come here and read that people do care and do understand is so helpful and great. I only wish we all didn't have to be going through this in one way or another.

[fillise]

Nothing about this, or any other cancer is fair. I understand your fears. Right after my mom was diagnosed, I had several dreams where I was also diagnosed with lung cancer and felt like I had to hide it from her so she wouldn't get upset. I haven't had one of those in a very long time. After awhile you get accustomed to the "new normal" and things won't seem quite as scary.

As for the pallative care, Ellen is right. My mom was stage IV from the beginning so her care has always been pallative. That doesn't mean no treatment (at least it doesn't in the States) and it doesn't mean they have given up. Her oncologist told her that his goal was to control rather than cure. So far, he's done just that.

Susan

[Caren]

(((HUGS)))

[Carleen]

It is unfair! I have often felt that cancer targets the best of us. I know plenty of people who seem to skate through life being mean, nasty and evil and they never seem to have anything bad happen to them. whereas I've known so many people who have suffered and struggled in life with cancer or other trials, who were the most loving, giving, humble and wonderful people. It goes against the rules of Karma. But then I remind myself that the balancing and judgement happens in heaven. And sometimes God needs some of the best angels in heaven, often before we are ready to give them up here.

I can't offer too much advice, as I don't know what it's like to face the thought of losing my mom. My cancer warrior was my husband. However I think you've gotten some great advice already. I know I felt angry, like I was robbed of what should have rightfully been mine, what others around me take for granted, their relationships (mothers in your case), friendship, support and love. That I think is pretty normal. But I think I could tell from your post that although you feel it, you don't seem like you take it out on your mom. Its not her fault, she doesn't deserve this any more than you deserve her having it, She's scared too, I bet she's angry too. She had plans, hopes and dreams that she is being robbed of, mostly I bet she is angry for not being there for you and your son, to watch him grow, marry, have brothers and sisters etc. Please remember that and be patient. Spend as much time with her as possible. It's good advice whether your mom has 9 months or 9 years. Mom's are a gift we should enjoy, share, and cherish. Do things together that will make good memories for later as well as pass along traditions that will keep her with you physically as well, such as have her teach you how to cook some of your favorite dishes from growing up, write down her recipes for you. Make memory scrap books filled with photos, and take new photos every day for your son so when he gets older he knows his grandma, and ask her to write memories or stories in the margins. I also like Susan's suggestion of having your mom make you a motherly advice book. You can work on it together, and spend some quality time together.

Finally, I want to tell you to not put 100% of your emotions into what the doctors say. (and to me it sounds like you've had some crappy ones, I'd look for a new doctor, one willing to be on your team and not on his own agenda) No one, and I mean NO ONE not even doctors can tell any one of us exactly how much time we have. My husband was stage IV from day one, and given 9 months as a prognosis. He did pallative care, which we told the doctors we wanted aggressive treatment as if we were going for curative. IT IS YOUR CHOICE! And because he never gave up hope, he never called it quits and he had me and others on this website researching other treatment options and keeping him going, he lived for 39 months. I know it's not enough. I would have like 50-60 more years, but that was 39 months doctors told us we didn't have. I remember when the 9th month came I was having so much anxiety expecting some sort of bomb to go off and him to slip away even though he seemed to be doing ok. And when it passed it changed things for us... all of a sudden every day after that 9th month was like a gift. God gave us 1 more day together, followed by another... we were grateful every day, we were kinder every day, shared more love every day. So hold onto hope. Pallative care does not mean no treatment. She could surprise the hell out of those doctors! Shove it in their faces for being the jacka$$es the are.

I will keep you and your family in my prayers.