It just hit me

Hi DMHGF

I'm so sorry about your diagnosis and how you are feeling. It is a very lonely journey. You can feel very alone when going through something like this and that is what this group is for. I'm sure lots of people will come alone to speak to you. It isn't easy, and the way you're feeling quite normal. Often in life we can do things with other people, but it feels very very lonely when you're having to deal with the unknown and nobody else is going through it with you. Hopefully your medical team will help you and provide some reassurance.

I'm sure your family and friends will be there for you, and you may be surprised to find that people rally round, when you least expect or from who you least expect. Some people will surprise and be amazing to you and others may upset you. I've let those upsetting moments go now, as it was along time ago. People do what they can do.

Reach out to people though and let them know how you're feeling. Please don't be scared to do that. We are all here, and in a similar situation or have been in a similar situation.

Big hugs xx

Oh sweetie. Rant away.

I don't know your family and friends of course, but my experience was that I was stunned at the people who stepped up and were supportive and helpful. People I never expected to be. You just don't know how someone will react to this until it happens. In any case, you ultimately are doing this yourself with your doctors. Family and friends are wonderful support, but depending on how independent you are (and it sure sounds like you are) you may find (as I did) that as lovely as it is to have them there, you won't really NEED them there. In early days, it's wise to take someone you trust to your first appointments because trust me you just won't hear everything. It's all too much. Later, once you've calmed down because you actually have a plan of attack, you'll feel much more in control and be better able to listen and go to appointments by yourself. After awhile, I actually turned people down to go with me. "No thanks. I'm good. I've got this."

It sounds like you don't know a lot of detail about your diagnosis yet? If it's early, you may find that it really won't be all that upsetting to your daily life. I took a week off after surgery. Other than that, I didin't miss work. I don't own my own business, so I realize it's very different, but I just want you to know that a cancer diagnosis does not automatically mean that you are going to feel like crap, that you won't be able to work, etc. I still have moments when I am STUNNED because I never felt ill. Not once. Not for one moment.

Hugs.

Cancer = Emotional mood swings. They are synonymous.

As a control freak myself, one of the things I did to feel more in control with the doctors was to educate myself on what all this crap means. Spend a lot of time here, and read books. I got a lot out of Dr. Susan Love's Breast Book and another called Anti-Cancer, but there are a lot out there. So when I had meetings with doctors, and there will be many, I knew what they were talking about and I had already formulated an idea in my head of how I felt about it. I was ready with questions, etc. The doctors will leave the decisions to you. That gives you great control.

Frankly, I NEVER expected people to rally around me when they did. I'm also a very private person. But, all it takes is a few people with loose lips to let everyone know about your cancer. I met with my boss after I knew I had to do chemo to ask for a reduction of some responsibilities. My boss was very kind, assigned me some administrative help, and said I could work from home for three days a week. However, he is also an inveterate gossip. He let everyone know that I had cancer. I wasn't really mad at him, but it is hard to lose control over your own narrative.

Ultimately, I concluded that breast cancer is just a disease like heart disease or diabetes. Yes, it can kill you, but it's also highly treatable. For a year, breast cancer treatment was going to be a major timesuck, full of scans and doctor's appointments and days in the infusion center. It was what it was. All I could control was my reaction to it and to devise ways to fit treatment into my life. So, yes, managing cancer does mean relinquishing the idea that you can control everything. You just can't. You just have to figure out how to manage treatment day by day. Best wishes!

ElaineTherese

That is great that they were so accommodating to your schedule. What a load off right?

I really wish I had that 1 person I could tell and have it spread like wildfire haha

It's going to get out but I feel really weird about being the one to tell everyone. It feels like I want sympathy or something which is not the case and REALLY uncomfortable.

Oh I'm so out of my element on many levels. Even admitting that is rough. I'm starting to think I may have benefitted from counseling for these personality traits even BEFORE the cancer hahaha.

Ingerp

You rock! I think I will continue to read more and more on here now that I've found the forum. It seems like a safe place to ask stupid questions and let out crazy thoughts.. I'll know more after tomorrow and once there is a plan I know I will be more comfortable. I plan to just treat this as any other job...just get it done and move on. Here's hoping!

DMHGF, I think that one of the biggest problems for me was the anxiety before my surgery. It was VERY hard to concentrate at work because I had so much to learn about cancer (reading studies, forums, etc). I also found that I didn't want to be bothered with little things and decision making on unimportant items. When asked where did I want to eat dinner I'd say "you pick" angrily! I just didn't care and felt like I had more to worry about than micro decisions.

I don't know how much of your job you can do from home from your computer, but that will make a big difference in how easy it is to keep working IMO.

I've been trying to be introspective a bit on this journey, and I found that I have a lot of supporting people in my life and I didn't really need much support other than knowing that they cared. I think the most important thing for me was having at least 3 different people who would listen to be blab on endlessly about cancer or whatever was going on with my doctor's visits. That really helped me think through things and almost get tired of talking about them.

I was lucky that my DH was a great caregiver and didn't get bored with my blabbing. But I also found that a lot of friends would have been willing to help. I have a neighbor who is a nurse who came over last night and asked what she could do for me during chemo. The answer was "nothing at the moment" because I'm totally fine, but the thought was uplifting.

I guess my real thoughts are that you may not need as much support as you think- just people to care and do little things. The bigger logistical issues for me were meals, laundry/household chores, and transport to tons of doctor's appointments. I didn't have the work issues as my coworkers covered for me, and I have no idea how you would go about getting a substitute if you are a sole proprietor with specialized skills.

For meals, we have a friend who makes them for us and we freeze them, but there is no reason that you couldn't prepare a lot of dinners and freeze them in advance. I cleaned the house before my surgery, and it stayed clean enough afterwards. DH did wait on me hand and foot and did all of the household chores, but I really didn't need it. I could have done most things myself except open jars or reach high things. I was happy to let him do laundry, although I could have managed it by making multiple trips up and down the stairs with the laundry basket. For groceries, we mostly ordered online from the grocery store and had them delivered. That was pure laziness, but it was nice to be able to do it. DH also took to all of my appointments, which was great.

I initially felt like my diagnosis was a very private matter, I didn't want to tell anyone. But as I got more comfortable with it, it became easier to talk about. I let select people know at first, and then at work I had to tell all of my direct reports before my surgery. That was when I decided it wasn't a secret, and now all of my immediate coworkers know through the grapevine, so that is about 80-100 people, plus my other friends. I haven't found a single person who isn't completely supportive. I joke about being "deboobed and reboobed" and it makes it easy for my friends and I to have candid conversations because I don't treat it like a secret. People routinely asked me how the boobs were doing as I went through tissue expansion. Most women wanted to talk about what size I'd pick and hear how it works. It felt more like a team effort to me once I let them in.

I had my surgery in mid April 2019 and I feel great now and have felt great for a while. I'm at 100% except for having somewhat weak pec muscles because I haven't exercised them much. I've completed one round of chemo and only have 3 more to go!

I felt much more in control once surgery was scheduled, and then I felt even better after the surgery. No more worry that the cancer was just that moment going from being in my breast to roaming around my body and that we weren't doing anything about it.

After my surgery and when I felt like I was at a good spot, I let me wider friends know via a post on Facebook. It was nice to hear how many of them went out to get mammograms that were overdue! Again, tons of support from everyone, and I hope it helped them to keep up on their medical checkups!

I was also a bit of a pain for my medical team, I like to think I'm now pretty informed on my cancer and the ways to treat it. I was a stalker to my BS's scheduler because if I hadn't been, it would have been an extra 3 weeks in my timeline and that was not acceptable to me.

I made sure I knew all of the different treatment options before I met with the MO so I could ask intelligent questions and also make good choices. For instance, my MO was explaining the different hormonal therapies, and I already knew what I wanted (OS + AI). I let her do all the talking, and although she started out talking about Tamoxifen, she ultimately recommended OS + AI, and I was like "perfect, that is what I wanted"! Had she not suggested it, I probably would have pushed for it anyway.

I think that being your own advocate is the best possible thing you can do for yourself. Keep it up!

I'm also a somewhat private person, and was uncomfortable accepting help. However, I got over it. I was shocked at how many people stepped in when we needed it the most. It only takes one or two people to rally the troops. In my case, it was the "football moms" whose kids played with my son - 4 years ago! I probably haven't spoken to most of these women in 4 years, but one angel organized rides and meals and it all worked out.

I did chemo, surgery and radiation - the whole shebang as one doc put it. I managed to work part time through chemo and, besides taking 2 weeks off for bilateral mastectomy, full time once chemo was done. Actually, I worked 40 hours a week during chemo, but it felt like part time since I was regularly working 60 before that!

Like you, I'm a researcher. I told my medical team up front that I'd be asking a lot of questions and, if that was an issue, I'd welcome a referral to another doctor who was open to my style. Besides a few "key" appointments, my husband almost never came with me to appointments. Not that he wasn't willing, but I felt more in control when I was on my own, and that was important to me.

This is going to be a "lost year" in some ways, no doubt about it. And it's going to suck at times. But it's one year and then you can start to recover your old self, reclaim those things that are important to you and let go of the things you realized weren't as important as you thought.

BCO has been my "on-line support group". I'm not one to join in the support group at my center - too private for that. However, although this community can give you the opportunity to remain anonymous, I've also formed strong connections as well.

As another wise poster said - Cancer = mood swings. Seriously, if not now, when?

You are getting really good advice from all the ladies above, plus you have a great attitude and curiosity.

A couple of things: sometimes I have to put myself on a BCO.org diet, as everyone's stories can be overwhelming. You are making your own story, day by day. Don't get all freaked out by all the stage IV gals here- many folks who went through treatment and are all good are too busy to come back here. It's all good.

Secondly, my good friend set up an account with Meal Train Plus, which had room for me to write journal entries as well as set up times/ dates for meals and rides to treatment. My DH came to all my chemos with me, but my radiation was 1.5 hrs away, for 33 sessions, so I had a tight schedule of friends to give rides. A logistical mess, but so helpful. I had only 2 posts on Facebook- one to get out the Meal Train website address, and the other to spread the invitation to our "Fuck Cancer" party that we had as a celebration and thank you to everyone who helped.

Hi AliceBastable

Thanks for your comments.

It's not that my work is vital to the world...I'm a tax assessor haha But it is very vital to my family.

It is a family business and our sole source of income. We do very well but have 5 children, 2 who are about to embark on college.

We cannot recreate our income with just a "job"... and if I cannot fulfill our obligations to the township and state requirements I will lose my license and a 30 year career will be down the drain along with our house, property and probably our children's education so....

I don't want to sound like my health is not my main concern in this but yes, my work is right up there with it!

My anxiety over this may seem crazy to some but obviously our situations are not all identical so our priorities won't all be either.

Take care. I hope you are doing well!

hello sweetie my family and friends were there for me especially my fiance at the time now husband he would hold me at nite while I cried and couldn't sleep your family will be there for you they are trying to deal with the diagnosis also give them a little time. But at first I too didn't think they would understand what I was going thru cause I was first in my family with breast cancer. So I too didn't think they would get it. But you 'll be surprise how they come thru for you. God Bless Us All msphil idc stage2 0/3 nodes 3mo chemo before and after Lmast body rejected expander implant as foreign body removed temp 104. Got married diagnosed during wedding plans then 7wks rads 5yrs on Tamoxifen. We celebrated our 25th wedding anniversary this May and I am now a 25yr Survivor Praise God.

DMHGF, getting the full picture with BC is a lot like completing a paint by numbers picture. While going through this myself the last several months, I was astonished at how long it took to collect all the information. By the time I saw my MO and BS post-op (which was a week before I started radiation), I finally finally thought OK I know the deal. And I did, at least for that moment in time. That's hard for someone like me who's definitely an A type, a planner and operates best when I know what's what.

All that to say, don't be surprised if you experience some emotional upheaval over the not knowing. Because for real, that was the hardest part of this for me.

It was surgery day! Results will be in Tuesday so it's waiting again. I sense a theme haha.

I am resting somewhat comfortably but already irritated by having to get help. And I can't pick up my 5 month old grandson for 14 days!! He's my happy place and it's breaking my heart. For now it has to be enough for him to sit next to me and read books :-)

Thanks for all of the advice and words of wisdom! And so it begins....

I live in St.Louis and there are so many organizations out here to call and help you. In fact, doing some of that "planning and researching" helped me through. Find what is called, "a nurse navigator". You breast surgeon should have assigned you one. Also, EVERYONE is so sympathetic and helpful if you tell them your diagnosis. Call your primary and tell them your diagnosis. If you are not sleeping, ask for ambien. If you need something for your nerves, now is the time, ask for it. Look into these 2 organizations as well, "the pink ribbon ladies" they provide meals, housekeeping etc. and also, "the healing chair" they deliver a wonderful super comfy recliner that helps you recover.

Despite having a great support system, I too felt completely alone. What you are feeling right now is so so normal and many survivors will tell you (me included) that the time before surgery and treatment was the worst part

Surround yourself with only positive people and find that nurse navigator. He/she will be an incredible resource for you. I was diagnosed in June and am now 3 weeks post OP and feeling so much better every day.

DMHGF - I’m a little late to the post but I felt 100% the same way you did at first. It gets better once a plan is in place. This forum is amazing and everyone so have talked with are more than helpful.