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Just in the beginning
My mom has recently been diagnosed with stage 4 breast cancer. This has been a crazy two months...

She was diagnosed in late April, and at the end of May she gets a double mastectomy. My father, two sisters, brother, and I are all taking turns bringing her to appointments and making sure her dressings are being cleaned when necessary. ( Mom has a ulcerating tumor that weeps constantly)

Her spirits have been high this entire time, though she's starting to get anxious because of the surgery. I am feeling incredibly anxious as well. Actually I am feeling so much more than anxiety. I'm finding it hard to process when I'm away from her. When the doctors are around or just me and mom I am so clear headed, and calm and can remember everything. But the moment I am by myself I can't hold on anymore. I am so scared, and angry, and sad, it's really hard to function sometimes.

I wish this wasn't the reality for her. I wish this wasn't something anyone has to go through. I wish there was more information. The surgery is just step one of the treatment plan, as they need to further biopsy her tumor. They don't understand it fully and that scares me a lot too. We have no guess on how this is going to effect her, and they have no idea what kind of timeframe she has left. It's spread to her adrenal glands, her ovaries, lungs and bones already. I just feel overwhelmed. I am so scared for her.
23 Replies
Trillium
2045 Posts

@ShelbieLos87 - Almost all of us go through a state of shock when we learn that someone we love has cancer and especially when there are so many unknowns and their future is so uncertain.

It’s so good that you have many people sharing the caregiving for your mom. I was the sole caregiver for my son and the only way I could make it through was talking about it here and taking courses in self care. I also had the love of family and friends❣️

Most important was the support from the folks here in cancer connection. I hope you will benefit from the experience and support of the many wonderful women and some men who have lived with breast cancer (and other cancers)on this site too.

We are here for you. Talk to us and update us whenever you feel like it. I will be back with some links to supports I found helpful and add them below.

Warm hugs

Trillium

Trillium
2045 Posts

@ShelbieLos87

This one is for your mom.

https://cancer.ca/en/living-with-cancer/coping-with-changes/newly-diagnosed

This one is for you and the other family members.
https://cancer.ca/en/living-with-cancer/helping-someone-with-cancer/caregiving/taking-care-of-yourself

This one has links to support for you and other caregivers. The SCALE program has therapists and support groups for those taking the course. It’s free and was so important for me.

https://cancerconnection.ca/discussions/viewtopic/35/71467

Hi Trillium!

Thank you for your kind words. This is exactly why I came here, it's been difficult and I know I needed to find an outlet and for connections.

Tammys5381
12 Posts

@ShelbieLos87

I am so sorry to hear of your Mom's diagnosis and your situation.

I lost my Dad (56 yrs old) to lung cancer several years ago. He was not diagnosed until it was late stage 4 and metastasized to his bones. The prognosis was grim from the start and the disease had progressed too far for any meaningful treatment to be considered.

At the time I was a 30-yr-old single mom of 2 young sons, working full-time and studying part-time to return to post-secondary studies. My Mom had passed 12 years earlier so I was Dad's primary support through his illness and his decision maker at end.

Like you, I managed to remain externally composed and confident when others were around (Dad, doctors, family, co-workers, peers) but when alone I would cry uncontrollably and wonder how on earth I was going to survive the coming days, hours and weeks until it was all over. I was falling apart in a way that I had never experienced before.

In hindsight, the only advice I can give is to make some time for yourself to be alone and decompress. Allow yourself to feel the anger, the sadness, the frustration. Don't be afraid to ask for help when you are overwhelmed. No one can be “the rock” all the time my friend; this is a lesson worth learning in life.

Please take care of yourself.

Tammy

Cynthia Mac
3929 Posts

Hi, @ShelbieLos87 , I’m glad you’ve found Cancer Connection.

I was primary caregiver for my Dad when he had lung cancer, and my mom had just passed away when he was diagnosed.

The fact that you can be so strong when you are around the doctors and your mom is good. The fact that you feel the urge to fall apart when you’re on your own - well, I get that, too.

Wishing and worrying have one thing in common: only one scenario can be the outcome, and the time we spend on allll the other outcomes becomes moot at some point.

My suggestion would be that you try and harness some of your worry, anxiety, sadness, fear, and anger and channel it into constructive energy, whether that is taking a 20 minute walk, working on a care schedule, or creating a Facebook group so that everyone can communicate as efficiently as possible as you all help your mom get through this.

When Dad was sick, I put as much faith as I could in Dad’s healthcare team. Since coming to Cancer Connection several years ago, I’ve learned that there are thousands of Canadians living with stage 4 cancer and that treatments have come a long way in the past decade or so. Not everyone makes it, but many others do. I will hold out hope that your mom will be one of the latter.

Runner Girl
2799 Posts

@ShelbieLos87

I am so sorry your mom has to deal with this nasty tumor and the wait times for surgery, information, etc. She is so very lucky to have her whole family there for her, ensuring she is looked after, loved and supported.

I am not a caregiver, I am a breast cancer survivor. I joined this site in May, 2018 the day after I received my cancer diagnosis. I know the waiting is hard. They have to test the tumor to see what it is, what it's nature is and figure out what best they can do to treat your mom. I had my tumors (3) removed on May 23 and my first chemo on July 31, 2018. I had to heal from surgery before they could start treatment. So expect some lag time for your mom.

I'm going to tag @Mammabear to join this conversation. She has had a breast cancer recurrence and it had spread to her liver.

Find someone you can talk to, perhaps that is all of us here, as we do understand. Your anxiety when away from your mom is going to wear you down quickly so ensure you engage in good self care as well.

Runner Girl

JenG
122 Posts
ShelbieLos87‍ It IS a lot to go through, and there is no easy button. I was a caregiver for my mom (lung cancer, stage 4, she lived longer than expected) and I sure kept it together around her and around the medical teams. But inside I was a wreck. Take the time you need on your own and cry it out. Scream in the shower, yell in the car, tense up every muscle in your body for 30 seconds and then relax. Breathe many deep breaths. And tell your mom you love her. Nobody expects you to be perfect or thinks you shouldn’t shed a tear. You don’t always have to be strong. You can fall apart. You’ll put yourself back together again. Tell a friend. Find a therapist. Seriously, talk it out. Take time of work. This is important time and it’s scary.

Big hugs from me.
jen
Mammabear
300 Posts

@ShelbieLos87 I have put the details on your profile about the BC Metastatic Cancer support group.

This is hard. And the waiting is the hardest. Wait for diagnosis, wait for treatment plan, wait for it to start, wait for it to end. Wait for side effects to start and end.

When I was diagnosed the first time my mom took it the hardest. I said ‘thank goodness it isn’t one of my children'. She said “IT IS ONE OF MY CHILDREN”.

Your mother is taking it well and staying positive perhaps because she would rather it be her than you or one of your siblings.

It is okay to be strong with her and cry in private.

We will all lose our parents one day - but none of us want that to be any sooner than necessary and having Cancer take them ahead of their time is terrible. But having said that - Cancer can't have your mom today. Treatments change all the time. I have been living AND I MEAN LIVING with stage 4 for almost 3 years.

Hang in there - when you get the type of cancer and treatment plan you will know more.

PS. Stay off Dr. Google. Data is old and does not reflect how long people are living with cancer. LIVING with it. This is a reality.

Thank you so much for your encouragement and support. No one I know has experienced this and I felt very alone in the process of it. I am feeling very fortunate to have found so many others who have been in this situation, as well as are living with this disease. It helps to spark my hope again when it was feeling very weak.

I can't even begin to express my gratitude for the outreach that you guys have had.

Ash2021
23 Posts

Hello @ShelbieLos87 ,

I'm so sorry that your mom is going through this. I'm glad she has the family support. My mom was also diagnosed with stage 4 breast cancer around March this year. We are currently waiting to see the oncologist because the surgeon said that right now she can't do the surgery.

I understand how shocking and scary this can be. I'm happy that you found this community. People are very supportive here. Some tips that I found helpful was taking it one day at a time and it's okay to let your emotions out. Please feel free to private message me if you would like to chat more :) Sending love to you and your family 💛

Plez
6 Posts

@ShelbieLos87 my heart goes out to you and your mom. I was my wife's primary caregiver for 8 years before she passed from breast cancer. What should have been months of survival stretched out a lot longer than expected. The surgical phase of her treatment with a double mastectomy crystalized so much change in such a short time that as her support it felt like getting shot out of a cannon along with your loved one.

As an active caregiver, you probably find yourself paying hyper-attention to details and shared moments, and it blocks out anything that feels unnecessary, like emotions, for a while at least.

Those emotions are always present, and they can do bad things to your body and mind if you don't have a healthy strategy to let the painful ones out now and then. I'm living proof of how much damage you can do to yourself when you are always on as a caregiver and there are massive emotions being triggered. My wife gave me humorous grief all the time that I was in a race with her to the end, but I better come in second, or else. I was her sole support, and in the beginning I don't remember more than a day here or there where I wasn't full on 20+ hours a day. If you have others available to spread the load, great! During your off time, give yourself permission to turn off that role as someone else's caregiver and become your own, and to dump those deferred emotions in a healthy way. I took up gardening in a rural community garden, because music or screaming seems all the same to tomatoes. Peas don't mind the extra salt in tears. Letting all that internalized emotion out can make you a better caregiver for your mom, so don't be afraid to let it out, that can be healthy and that's ok.

A sense of community can be very powerful to give you strength, so reaching out helps a lot. Feeling alone can put a magnifying glass on the things that bother you, looping them over and over again in your mind, retriggering negative emotions. Communicating with other people can help pull you forward, as long as they can relate and appreciate where you are coming from. A lot of my friends didn't want to share my worries, even some of my oldest friends, because that can be perfectly normal human behavior to avoid something painful. For both my wife and myself, cancer rewrote our address books. Have faith that you can and will connect with people that “get it”, and they will be your cheerleaders.

Best of luck to you and your mom. My prayers are with you.

JenMcD
32 Posts

@ShelbieLos87 You're getting lots of good comments from the wonderful supportive community here. You're being strong for your mom and the best way to keep doing that is to be gentle with yourself and allow yourself to process what's happening.

I was the main caregiver for my mum who was diagnosed with stage 4 lung cancer. This group listened and sent me support at some of the toughest moments. People here helped me make sense of what was happening and show up for my mum the best way I could.

Take care of yourself and your mom! 🤗 And this forum is here when you need to share.

People have been overwhelmingly supportive and it's very encouraging. I am so grateful for every and have tried to answer people back when I can remember to. Im not great at reaching out to people when in need but the overwhelming support has made it much easier to handle over the past few days. I think this was a great idea to try out, and I hope in time, I will be able to help other like the people on here are helping me

Cynthia Mac
3929 Posts

@Plez what a powerful post! Thank you so much for sharing. In my career, the corporation I worked for operated four seniors’ homes, and we heard often that long-term caregivers often ended up with worse health issues than their “patient.”

@ShelbieLos87 - You’re “one of us” now… <insert evil laugh> (We often find that people come here to get help and end up staying to help others. All are welcome on both counts!)

CentralAB
1251 Posts
Hello ShelbieLos87‍ Thnk you for sharing this with us. Most of us responding here have been through very similar in some way, and I for one experienced this group as a major blessing when I was struggling to care for my late wife. This web site is probably one of Canada's best ideas!

All I can hear in my head is a chant “one of us, one of us”

I'll take it! I want to be part of the community, if I can help ease other people's journeys through my experiences, as well as getting help from the community while I am in mine and for my mom, then this is the best place I can be right?

Cynthia Mac
3929 Posts
ShelbieLos87‍ - ABsolutely!

Welcome!
CentralAB
1251 Posts

ShelbieLos87:

All I can hear in my head is a chant “one of us, one of us”

I'll take it! I want to be part of the community, if I can help ease other people's journeys through my experiences, as well as getting help from the community while I am in mine and for my mom, then this is the best place I can be right?

Well we will take you then, of course! Even the best of us get tired or need to step away for a bit of self care. That's why it's good to have more people like yourself to join the cause. BTW your posts here already have likely helped others. People going through cancer patient or care giver issues need to see stories of others. Your story will change someone's heart forever.

Ali99
14 Posts

@ShelbieLos87

Welcome to the society! You’re definitely not alone. I can really relate to what you are going through. Like many other mentioned here, there are many people living with stage 4 cancer far longer than what was expected before. First I want to give you some real miracle story in my husband’s family.

My husband’s mom was diagnosed with stage 4 breast cancer back in 1999. He was in his teen years and she was only 42 at the time. She had double mastectomy followed by lots of chemo and radiation. They were told that she would probably have less than a year to live…but miraculously, her cancer remained stable after all the treatments for 8 years before she found more cancer cells in her liver and bones. Since there was no targeted therapy for her at the time (in 2007), she started several rounds of chemo and radiation again and remained stable for another four years until she passed away in 2011. That was more than a decade ago with far less treatment options available compared to what we have now!

I’m here because I’m one of the caregivers for my mom (my dad is the primary), and my mom was diagnosed with stage 4 lung cancer since July 2021. My mom is also a breast cancer survivor for 20 years before she found out her lung cancer last year. It’s been very hard, especially I also have to take care of two young daughters (9 and 3). I’m like you, when I’m with my mom, I’m okay and think less of her illness and all the uncertainty. When I’m not with her, I could be so sad, depressed, and worried all the time, and just carry out my life on autopilot. My husband has been very supportive, but it’s a whole new level of stress when you have a loved one diagnosed with an advanced stage cancer during a pandemic! Just two months ago my mom was hospitalized due to some lung infection (she caught a cold from one of my girls). Suddenly she had trouble breathing etc. and long story short, it was a very scary week for all of us. She also found out that the targeted medication was not working for her, so her doctor switched her to the first medication that works well but with more side effects and followed by 10 sessions of radiation. It really took a toll on her, but she’s slowly recovering at home. I decided to take a leave of absence when she started her radiation therapy….it was too much for me as well that I started to develop panic attacks at certain times. I hope you will also take some time to rest and take care of yourself (easier said than done), but like Tammy mentioned, no one can be the rock all the time!

Take care my friend, and I sincerely hope your mother will give some miracle story in the near future too!

I am very grateful to be able to help others where I can, even if it's just helping someone know they are not alone in this!

Just as an update to every, mom had her double mastectomy this morning and is doing well so far! Thank you for everyone with your well wishes and positivity. It really helps to make everything a little easier to manage!

Cynthia Mac
3929 Posts
ShelbieLos87‍ - thanks for the update!
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