My moms diagnosis

ClareH35

I'm not really sure where to start. This is the first time I'm going to be 100% honest with myself (and you guys) in the hope that I'll find some strength as I can't really speak to anyone.

My mom was diagnosed with BC just over 3 months ago and has just started her 2nd cycle of chemotherapy.  I don't know the technical gargon but it's slow growing and completely treatable.  She'll have a lumpectomy after chemo and maybe radiotherapy.

There are only 3 of us in my immediate family. My sister, my mom and me and so obviously we're both helping out as much as possible and taking it in turns to go to hospital appointments etc.  but my sister is also a miltitary wife (husband in the Royal Navy), has a 3 year old daughter and is 20 weeks pregnant. She is doing more than she probably should to help out and as I live on my own and have no kids I'm happy to help out more.

The problem is I'm struggling with all of my emotions.  I can't talk to my sister as she clearly has enough to deal with and I don't want to burden my mom. All of my friends just say 'she's a strong lady, she's a fighter........' and yes she is but no one I know has been through this and so don't really know how to respond if I talk to them about it.

My mom has just lost all of her hair and yesterday I saw her for the first time since she's gone bald. She  has a few whispy, fine hairs but it's now practically gone.  How can you explain to someone who hasn't been through it how I was so scared to see her like that because my mom has hair and I don't want a bald mom and what it it made her different somehow? How can I tell people that I just wanted to cry because my mom is sick and I can't do anything to help her?

I feel so bad having these thoughts and I'm so angry about it. I'm not niave, I'm an adult and know how the world works but feel like I've reverted back to childhood.  I just want my mother back to how she was.

Please, someone tell me I'm not alone with this. 

Thank you for reading if you have.

Clare

Obxflygirl1

Clare, you are so not alone in the journey.  Your feelings Are completely normal.  I think people forget that BC doesn't just effect the patient...it effects everyone who loves her, especially the daughters.  You have fears  and rightly so.   Underlying the diagnosis has to be the thought that it could have been you..and.what does your mom's diagnosis mean in terms of her daughters.  The short answer is that it means your risk of BC is slightly raised.  People don't know what to say.  There were a lot of times when I needed my friends to say , I know you are scared and I wish I could help you with those fears.  Just to be there to listen.  Instead, most everyone says oh, they caught it early, that's great and then they move on with their lives.  It doesn't work that way for the patients and their loved ones.

Allow yourself to grieve for the mom you knew before her diagnosis. She will be forever changed inside and out....as well as you will be.   There will be better days ahead .  Right now your mom is in the fight mode and has a long road ahead of her before she comes out on the other side.  Just take it one day at a time and find someone you can tell your fears to.  I finally called a friend and ask her to just listen...don't say anything....I need to get this out.  I said, I don't expect you to fix it, I just need to say outloud that I'm scared as hell for my future.

I know others will give their thoughts. I didn't mean to be so long winded.  It's kind of therapy for me to  help others by relating my experiences and feelings in the diagnosis .  I wish you and your mom all the best.  She's in good hands with her caring daughters.

Moderators

It is a scary time for everyone involved, especially your mum. People on here understand your emotions and fears and will be supportive. It is very hard when you don't feel you have anyone to talk about things, but you'll find plenty of advice and support from the BCO Members. Also the educational information you'll gain from here is invaluable.

Best wishes to your mum and you from The Mods.

ClareH35

Thank you both for replying to me.

For once I've had replied that can help and make me feel less alone.

You're right Obx, I am grieving. It really does feel like that and although I knew that's what I was doing I hadn't figured out why.  It's also made me realise that the anger and bouts of depression are part of that process too. 

I'm a logical person and have to write things down to get them straight in my head. It can be a shopping list or stuff I need to do at work but this BC was all just floating in my head in any old order and that doesn't work for me.

I think typing it out helped (although I cried) and your reply helped (yep, cried again) and feel that I'm a little bit more structured.

Thank you also for your kind wishes, they mean a lot. I wish you all the best also. 

Obxflygirl1

just wanted to check in and see how you were feeling today.  I know you love your mom and it is hard to watch the changes that happen with chemo.  I know your heart is hurting for her and that is normal.  Allow yourself a good cry and get it out.  You don't have to be strong all the time.  There will be light at the end of the tunnel, I promise.   

ClareH35

How sweet of you to comment again, thank you so much!

I shaved moms remaining hair today and have to say she looks a whole lot better now than with those long, fine, wispy bits of hair she had left. It got a bit emotional but now she looks like a bald woman rather than someone who is obviously sick. Does that make sense?  

We looked at tying head scarves (she has some that are elasticated so don't need knotting) and both put her wig on to get a feel for how it looks and how easy it is to place properly.  It's been a positive day.

 I can't promise that it'll be a good day tomorrow but at least I know that I'm not alone and that it's normal to have these emotions and thoughts.

LaLa23

i completely understand how you feel. my mother was diagnosed in nov 2013 with stage 4 met BC. she had been hiding this from us. (she is very old school and very afraid, and her culture i believe has alot to dot with it).  so for god knows how long she said nothing. she never wanted to burden us or hurt us. i truly believe she would have said nothing and kep this horrible secret if the pain had not become unbearable. in nov  she finally told me and my father.  when i saw the tumor (her breast was already disfigured) i truly felt like my mother died right there. i cant explain it, but i literally felt at that moment that my mom was going to die.  i felt like i was mourning her, even though i was sitting and hugging and crying with her. it was a surreal experience that i wish on no one.

we went to the breast cancer center near my home and they did all the diagnostic imaging and testing , biopsies...etc.  they confirmed what we all knew. she has stage 4  met BC which  has spread to her bones. the pet scan showed it was heavily concentrated in her spinal column. which would account for all the horrible pain she was suffering thru.

so since dec, my mom has been on hormonal treatment. thank GOD her pet scan in May showed that it had not spread , and no new cancer lesions were found. the HT is doing its job.

the guilt i feel is unbearable, i wish i was the one ..not my mom.. who did nothing her whole life but love and take care of everyone around her.im ams very close to my parents, I am an only child (38yrs old lol not a child i know, but when it comes to my mom i feel like a child.) I am the one taking her to the dr and to treatment and making sure her appts are scheduled. i would never not do this for either one of  my parents. i have to be strong constantly for her, and when im with her im her rock.   but when i get home i break down. my anxiety is thru the roof and im sad all the time.  i just want to be a little girl again wish none of this was happening. i know i sound selfish, but in turth im just scared to death of not having my mom around.

sorry this is so long. its the first time im writing in any kind of setting like this.  like u were saying noone really understands. yea they say shes a fighter shes gonna live along time. and everyone has something to say. like telling me what i should do, what to do for her,  where to go and so one. I appreciate it but just let me vent and say nothing!!  they dont understand!

thank you all for letting me vent! 

mjm1

Hi Clare,

it's so hard isn't it, watching your Mum go through all this. My mum has just finished her last of 6 rounds of chemo, and will be getting less toxic infusions til February. Shaving her head was the strangest feeling. She is so strong and brave and beautiful, and actually managed to make us both laugh, but at the same time part of me was just watching us, thinking how terribly sad it is to be doing this. 

There are so many emotions. I still get hit by the sadness and fear, and hate watching Mum feel rotten, but it's not as often as early on (down to about twice a week instead of every waking moment). And after her last chemo, I had a day thinking 'hey, maybe the worst is all behind us now'. Kind of scared to believe that in case there's any more surprises, but it was a really nice feeling like the sun coming out again after a truly harrowing first half of the year.

Hope you have more good days - but keep posting either way. I know there's other people going through this, but sometimes it feels like only family members of stage 4 ladies post, and I know our situation doesn't even compare and I feel bad for getting so messed up over it all when I know it could be much worse.

Bye for now,

Miriam

ClareH35

Thank you to everyone who's commented on this.  I have to say that since my original post I can't believe how much lighter I feel.  I guess we all have to vent in some way.  I hope that you LaLa are feeling a little better after your post.  You said it was your first so congratulations for getting it all out (I really struggled to get the words out when I did it so know how difficut it is, as does everyone here I imagine).  Please post again if you want to vent or chat or even tell a joke or 2! 

Congrats on your mom finishing her chemo Miriam! Here's hoping that she doesn't have to have any more.  Has she already had surgery or does she now have to have it?

This is the first week since she started treatment that mom hasn't had to go to the hospital for some reason or another.  I think that's making a difference and has let us relax a little. Seems odd with everything else going on but strangely it seems like less pressure.  She's going to see my niece tomorrow (she's 3yrs old) for the first time since I shaved her head so is worried about how Amelia will react.  She knows that nanny is poorly and that she's going to get tired easily etc but hasn't seen her with no hair.  Once that's done I think mom will sleep a little better, even if Amelia isn't completely happy the first time she sees her. She'll get used to it soon enough, kids take everything at face value so although mom won't be 'her nanny', she'll soon learn that she is but she just has no hair!

Thanks for reading again, I appreciate it.

LaLa23

Thank you!  Yes it felt good to get it out.   Good bless your mom and all of our loved ones going thru this.  Have faith. ... that's what I hold on to. 

mjm1

Hi again,

Lala, I was in a hurry yesterday and hadn't read your post. I completely agree with both of you about how other people don't get it. I know they mean really well when they make comments about being positive and all that, but sometimes it helps to vent about the guilt and sadness and fear and how unfair it is - I find once I've let some of that out I can feel more strong and positive, but I can't just be positive all the time when the reality is we're facing something scary and sometimes just plain horrible.

I think there is a lot of grieving. I was with Mum at the doctors when she was diagnosed (she got called in early so knew it was going to be bad), and we didn't know how bad things were going to be or not be except that it was a very large tumour, and I knew nothing about cancer and how treatable it can be, or how long many women live even if it has spread, and I believed that this was going to be the year that I lose my Mum, and I'd walk around the house just doing something normal like having a shower and the tears would just be streaming down my face. And my boyfriend gave me a big hug and said you're grieving her - you haven't lost her yet, but you're grieving. 

As much as I hate seeing Mum sick and knocked around by the chemo, I would be completely ok with one year of this if I could get a guarantee that this cancer isn't going to come back and take her from me at some point (I know no-one ever has that even when they're healthy, but that childish part of me still wants it!). There's so much in life that you want your Mum there for - the big stuff like having a baby, and then all the little birthdays and good days and bad days you want to share. I hate the loss of that sense of certainty more than anything. And that's the thing that I don't really talk about to many people at all.

Clare, thanks, yep, Mum had surgery before chemo (followed by a nasty infection and seroma that meant going in to the hospital twice a week until chemo started), so hopefully all the big stuff is over. She had her heart test yesterday (herceptin can cause heart problems and if it gets too bad they have to stop treatment early which is a scary prospect with an aggressive cancer), and she's doing ok - yay!

Hope things go well with your niece. Kids can react in such funny ways, you never know if they're going to be weirded out by something or take it in their stride better than the adults do. But she'll get used to it and not even notice soon I'm sure.

Thanks for listening and letting me vent:)

Hope you and your families are having a good day,

Miriam

cheshire84

Hi Clare,

Feel free to come vent here whenever. My mom was just diagnosed in May (it seems weird that it has been this long) with invasive lobular cancer, Stage II and to be honest, it has rocked my world. I'm in a similar situation to you, it is just me, my mom and my sister (my mom does have a very supportive boyfriend, though) and so we have been doing everything we can to support her. But honestly, it has been a struggle and each day is filled with ups and downs. I sometimes feel bad that I am so upset-I'm not even the one who has cancer. But something happening to my mom has been my worst nightmare as she is pretty much my only functional parent. 

I understand your grief-for a few days after I couldn't get much done. What has helped me is being on here, lurking on the boards, reading studies online and trying to figure out what it all means. I am a person who likes to plan, so it helps me to write down lists of questions I have for people and what I want to know about her treatment. It has made me feel like I have a little bit of control and that I can at least help my mom by knowing what is going on and being able to be positive and hopeful about treatments. 

Good luck to you both! Your mom is lucky to have you.

LaLa23

thank you  to everyone who has taken time out to write and share some much needed words of understanding and encouragment.  i pray for all of your loved ones and ask you do the same in return.  its nice to have a place where we can vent or just say "i get it" "i know what you're going thru", from people who really are going thru this, and are in some way being affected by this horrible disease!  xoxox

ClareH35

I know I was a bit of a wreck when I first posted so now wanted to share a bit of good news.  After 2 chemotherapy sessions my moms lump has shrunk!! I know she's not out of the woods and has a looooong way to go but  just getting a little bit of positive news has made all the difference.

I hope you all, and your moms, are doing well x

mjm1

Hi Clare - that is fantastic!!! Love every bit of good news:) 

And hi Lala & Cheshire, hope things are going well.

mjm1

Aaaaargh - need to vent! Things have basically been settling out again after a horrid start to the year. Mums diagnosis was very traumatic, then there was a really busy time after her surgery when she had an infection and seromas and I was taking her to the doctors 3 times a week, then chemo started, I had surgery for a bc scare (benign thankfully). Plus all the little pain-in-the-butt usual life stuff - our car got broken into at home, a fence blown over in a storm etc. So I've finally been feeling like I've been getting on top of things - catching up on some of my study that I got behind on and taking on more work hours to make up for having taken a lot of unpaid leave to be with Mum, still squeezing in a bit of time with Mum every day for the most important stuff.

Anyway, just when I was starting to feel like I was doing an ok job of managing life again, rather than getting further and further behind on everything & this nasty old lady stopped me outside Mums place about a week ago to complain about the garden being overgrown. I explained about Mums cancer and that we would get it looking nice again soon we've just all been too busy. And now she's complained to the council!!!! I can't believe anyone would be so horrid - she doesn't even live in the same street, so it's not like she even has to look at it, is just being a complete busybody!!!!! Have no idea how to fit gardening in on top of the other 100 things I'm trying to get done for work and uni and Mum and my own poor neglected boyfriend and home.

Formymommy

Hello, this is the first time I have ver posted anything.  Just found out this past Friday that my mom has BC in both breasts. We are going tomorrow for the diagnosis and treatment plan.  I am so scared. I feel so bad.  I have such high anxiety and am a total wreck.  None of my friends really understand.  I have 3 young children and will need to drive 2.5 hours one way each time to pickup my mom and take her to her appointments and another 2.5 hours back.  I just don't know what to do.   I can't do this by myself.  My sister is expecting her 3rd baby any day now, so she 

isn't in a position to help.  My father doesn't drive.  To top that off, there is a language barrier.  And if my mom stops working (she is 74), there will be no income either.  This is just too much for me.