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Topic: It's been a year and a half since she told us

Forum: Caring for Someone with Breast cancer —

A place to share your struggles and concerns about supporting and caring for a person you love diagnosed with breast cancer with others who understand.

Posted on: Apr 23, 2017 08:53PM - edited Apr 24, 2017 05:52AM by Ffion92

Ffion92 wrote:

my mother got diagnosed with breast cancer on October 31st 2015. I'll never forget that day, it wasn't only the day we found out but it is also her birthday.

I have never physically felt my heart break before until that very day! Even thinking now to the lead up to it I cannot remember ever feeling worry or concern.

She'd gone to get her results with my gran, leaving me and my sister at home waiting for them to come home so we could go for coffee and shopping as was our weekly routine. I can vividly remember lying down on our couch with my sister sitting in the chair in the bay window watching tele while my dad was on the computer. My mums car parks outside, my dad gets up, "mamis home." I don't remember exactly, but I either could see her reflection from outside in the mirror above the fire place or from the corner of my eye, but I just saw her shake her head to my dad as she got out of the car, from then on I knew. The door opens, she goes straight upstairs. My dad left the room and they both came down. My gran sat next to me, my dad back by the computer and my mum opposite my sister on the arm chair. There wasn't really much to say, she basically said she had breast cancer and the date of the operation had already been booked and there would be chemo and radiotherapy to follow.

Fast forward, she had her left breast removed and all the lymph nodes (I'm not too sure about all the technical information as you'll see) and a small lump from her throat which had obviously spread. And that's it, I remember one appointment my parents came home from and me being in total panic because my dad couldn't bring himself to tell me what was discussed as he couldn't hold back his tears, but such words as incurable were said.

A year and a half has flown by and I'm still no clearer in understanding, and/ or probably too scared to ask the questions. I have no real idea what exactly is happening. She's been taking hormone tablets as the type of cancer she has thrives on one of our naturally made hormones. She hasn't had any chemotherapy or radiotherapy.

In a short and awkward conversation I had with her the other day, of what I can can gather she has stage four cancer because it had spread to above the collar bone in her neck. I asked the question as to why there wasn't any chemotherapy or anything happeing as was discussed when we first found out. She basically said that they're not too sure if the cancer has spread anywhere else, and it's basically a wait and see situation...

This post is mostly so that I can get these feelings off my chest as my mother was very insistent that nobody knew except close family. Still a year and a half down the line it's surprising that not many people know considering the relatively small town we live in. I think this makes it harder, it feels like a secret and I've got to watch what I say.

When she got diagnosed, I'd just finished my masters that September and was living at home mulling about thinking about what to do next. This happening then made me get the closest and quickest job I could at home so that I could stay at home and be there as my sister was living in Cardiff. I'm still living at home working in retail and feel guilt that I'm now holding myself back from looking for better jobs not wanting to move away because im too scared of what might happen.

I thought writing it out would be therapeutic, but it just makes me think about it all. I'm under no illusions that many many families have it far worse than ours, but this is just my story as a twenty fouryear old girl struggling to come to terms with something she doesn't understand a year and a half down the line.

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Apr 24, 2017 05:37PM LisaAlissa wrote:

Hi Ffion92,

It sounds like you and your parents care for each other deeply. But you've put your (young adult) life on hold, and I have to wonder if this is what your parents want for you?

You need to have a conversation with them, and tell them that your worry (and lack of knowledge of your Mom's medical situation) is why you haven't followed up on employment options elsewhere. Do they need you to be close by to manage your Mom's care/medical appointments?

There is usually a social worker or family care specialist at cancer centers. You may benefit from a visit with such a person so that you can get a better idea of your Mom's situation (assuming your Mom is willing for her medical situation to be discussed with you, of course).

And if she does have metastatic breast cancer (MBC), yes, it's generally considered uncurable, but it isn't untreatable. Many people live with on-going treatments for MBC for many years. And some of them die of something else (even if they still have MBC when they die). If she does have MBC, you may want to ask BestBird for a copy of her ebook on MBC for more information on the many treatment modalities that are open to those who have MBC.

Finally, "life" is terminal. You (or your mother) could be hit by a bus tomorrow. There's no sense in not living your life, because you worry about how your Mom's will end.

Talk to your parents.

HTH,

LisaAlissa

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Apr 25, 2017 06:24PM Ffion92 wrote:

thank you for your reply Lisa, I wasn't at all expecting any feedback or anyone to even read this, but it's greatly appreciated!

I feel like I've left it sooo long to ask these questions it's become awkward.

My parents are really supportive and want the best for me so they would be thrilled for me to pursue anything even if it meant me moving away. My dad goes to all my mothers appointments, so they don't really need me at home (as much as they say they love having me there).

I may ask if this is the type of cancer she has as maybe reading this ebook would be more helpful and easier for me to understand because my mum might be trying to shelter me from somethings not to worry me.

I did meet someone at the Brest care unit before her operation and she was very nice and asked if we had any questions, but at the time it was still a shock and to be honest I was emotional and remember thinking if I speak i will cry, and that's the last thing I wanted to do at the time in front of my parents.

Thanks again for your message, ffion

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Apr 26, 2017 01:21AM Jackster51 wrote:

Ffion.. I have no great words of advice for you but just wanted to reach out and say that I can hear your concern and love loud and clear. My mom was diagnosed many years ago - back when I was 20. She lived for 5 years after that. I was living out of state, but would come home as much as I could to visit. I had other sisters local - like your dad - to go on her appointments etc... I do remember when she passed feeling guilty for not being around more - but I think everyone would say that - even if you were in same city/house/state. 26 years later, I feel OK with how I spent my time. Sometimes I have regrets- But truthfully I think I didn't want my mom to feel like I was 'waiting around for something bad to happen'. I guess I thought the the more 'normal' my life was, the pink elephant in the room would not be as huge. It's a really tough place for you to be in. Like the earlier poster said, your mom can be around for 10+ years depending on treatments and type of BC.. Cancer can be a very unpredictable thing to have, meaning that no one can give you - or your mom - any clear cut answers. I hope you can find a comfortable middle ground some how - where you feel like you are moving forward with your life, because I'm sure your parents would want that for you - and possibly be close enough that you can come home once a month or so to visit. As much as I know you love your mother and want to be there for her, please know that she loves you more and wants whats best for you too. I'm sure she is very distracted with all thats going on with her illness and treatment and very pre occupied with that. Maybe start by having some 'light' conversations with her about your career path and ask her for her advice on that and see where she takes that conversation. You're in a really difficult place - I know - I wish I could give you a big hug. It's hard. But maybe start with baby steps - career conversations - cancer conversations if it feels right - and maybe start searching and applying for jobs and see what comes up. Involve your mom in that process with you. I'm sure that will be a great gift for her to see you growing and thinking of your future. And remember too - your decision isn't set in stone. If you do take a job and move away - and a year or 10 down the road feel that you should be closer to home - then who's to say you can't quit or take a leave and move back? There aren't any great answers - just try and see what feels right/best for you. Big hugs.

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Apr 26, 2017 04:48AM - edited Apr 26, 2017 04:50AM by ShetlandPony

Hello, Ffion92. My heart goes out to you. From what you wrote, it appears you and your parents are trying to protect each other by not talking or asking questions. This is a common and natural reaction. I want to suggest that you all consider that talking about it may bring you closer, dispel some fears, and lessen the scariness of the taboo subject. I found this to be true between me and my husband. If you wanted, you could talk with an oncology social worker (or psychologist) as LisaAlissa suggests.

Based on the info you give, it sounds like your mum may have had very limited mets, and things are being kept under good control with the anti-estrogen pills. This state of affairs could last a long time before chemo or radiation would need to be considered. With MBC the doctors try to consider quality of life and the fact that treatment will likely be ongoing. So they don't bring out all their weapons at once. Many of us get nervous before scans or blood tests, but manage to enjoy a fairly normal life the rest of the time. Keep in mind that if you read up on MBC, you won't know what does or does not apply to your mom's situation without input from your parents or the doctors.

I hope you can find a balance and a way to live your life while also making time to be with your mum. In other words, pursue the career you want, but maybe don't move to another continent to do it. Your mum will be happy to see you living your life, and she will be happy to spend time with you. At least that is how I feel myself, as a mom who has cancer. Cancer does keep us from taking our loved ones for granted.

While keeping her health status a secret is hard, there are real benefits: Your mum escapes stupid comments, nosy questions, and unsolicited advice. She gets to be treated like a "normal person" and not think about cancer too much. I say this because I have made the same choice about privacy.

You sound like a wonderful daughter, and I hope you can open up communication with your parents that will help everyone feel better, even though it may be hard to start. May I give you a hug? There.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Apr 26, 2017 04:56PM Ffion92 wrote:

Thank you all for your support!

Jackster51, I'm very sorry to hear about your mum, I can't imagine losing mine but something like this does make you think about all the things you never would think of before! A large percent of me wants to move along with my life so that she can be proud of me and I can't do that at home unfortunately, it's something I will have to move away for. It would be easy enough to visit though as you said.

I really appreciate your outlook ShetlandPony from the perspective of my mum in a way. My concern is asking something at a time where she may not want to talk about it. I totally understand both yours and my mums decisions not to tell the whole world, we're a particularly private family in any case. It's also not a subject people feel comfortable talking about in most cases. My sister living in Cardiff meant that she could confide in people that wouldn't know my mum or anyone where as I couldn't really do the same.

But yes I agree with you all that maybe just asking for a little more information so I can explore the topic myself would be helpfu for me to understand her cancer specifically and but my mind at rest.

Thank you all so much again, ffion

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Apr 26, 2017 07:03PM ShetlandPony wrote:

Actually, I'm not sure about getting a little information and then exploring on your own. If you do, remember that everyone's case is unique, so you might not know if what you read applies to your mum or not. It is easy to misunderstand if you can't have a dialogue with the person and/or doctor.

If you do as Lisa suggests, and tell your parents how being kept in the dark is affecting you, I think that will not come off as trying to invade their privacy. If you feel that the lack of information and clarity is more stressful than knowing what is going on, and that you are having a hard time making your career plans, tell them that. Remind them that you are older now than you were when she was first diagnosed. As far as timing, why not make an appointment with them. For example, say you would like to talk about important things, and could you all go for a walk after dinner. If they really do not want to talk, would they give you permission to speak with the doctor? Even if that does not happen, if you feel it would help you, you can speak to the hospital social worker about how the unknowns are affecting you. That person would not be able to talk about your mom without her permission, but would be able to talk about you and your struggles with having a family member with cancer.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Apr 26, 2017 07:58PM MinusTwo wrote:

Ffion - I guess I'm the flip side of the coin. I too didn't share with anyone but my very best friend and asked her not to tell anyone else. It made for a peaceful time during treatment & recovery without constant questions & invasions with people bringing food I couldn't eat and asking 'how are you' when the answer was clearly crap. But even more, it appears that your parents are a self-contained unit and handling things together. That is to be admired. If your Mother wants you to know any more or wants any help, I believe she would let you know. Or your Dad would. I also think that you need to get on with your life. It would be awful to put your life on hold for the 10 or 15 or more years that your Mother may doing OK. That is what most parents would want for their children. Maybe you could just ask - 'what do I do about moving ahead with a job & my life when I'm worried about you'. That way she still doesn't have to go into detail if she doesn't want to.

Please be careful about researching on "dr" google. There are many things there that are out of date or just flat incorrect, as well as scare stories. You would be better staying here or going to an NCI cancer site. Mayo clinic is one of the good ones.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014

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