What you wish your friends knew
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Well, I-beat-it, there are a lot of people here in the stage iv forum who understand you!
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ShetlandPony, I guess I expect people to be weird about all of it.
I haven't noticed being ghosted but honestly I don't know if I would - between covid and everyone having some crap in their lives I just figure people will fade in and out anyway.
And also, if a person is really just a fairweather friend then I'd rather know now than pretend, kwim?0 -
Agreed; something like this shows you who your real friends are. But in the larger circle there are the casual friends, maybe the ones in your sports group, dance class, book club etc. It can be nice to have a place to go where you are not cancer-girl, and you can forget about it for a while. And where you are not subjected to stupid comments and advice. But what really made me shy away from telling much is that I was a victim of cancer discrimination and denied a place in the “top” performing group once I told, because a few influential people decided I would probably be unable to fulfill my obligations, that I would let them down. I knew what I was able to do, but they thought they knew better, when they were actually ignorant and prejudiced. Contrast that with a different group whose leadership said, what you can do will be enough and we will support you. And I taught my classes and did not miss any.
So here is what I want people to know: I’m not dead yet. Don’t leave me out because you are “concerned about my health”. I know what I can do. And you can’t guarantee that nothing will happen to you, either.
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Agree about the work stuff. No one knows my true diagnosis, but my line manager and her manager know that I have cancer. Unfortunately for as long as the damn treatment has gone on I wonder when they will start to suspect something. Frankly I wish I hadn't had to tell anyone at all at one point, because now my line manager keeps asking about my health. (well, its fine. Probably more fine than the girl who bonked herself on the head two years ago in a bike accident and widely shared the fact she cant remember a damn thing anymore, but its cool, put her in charge of major projects). Is it ok to tell her - 'Look, I don't want to talk about it anymore,its under control and I will let you know if there is anything that will impact my work performance.'?
This is the same woman who was complaining to me earlier this week at our check in about a slight headache and dizziness and worrying it was Covid. She was also sitting at her in-laws place in Greece, had been to the beach recently, and swimming in the ocean daily. I dunno, you think it could be sun related? Must be nice, I havent been able to leave the country in a year, go to the beach, OR see my family and I don't know when I will be able to either.
I dont expect people to completely censor their thoughts as very VERY few people know about my cancer at all, but cmon. THINK before you open your mouth!
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Yes ... A "friend" once said to me "At least it's not terminal". I was flooredl What do people think metastatic means?
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Ah yes, the unthinking. When I was in the middle of dealing with my first diagnosis I had a "friend" who commented regarding someone who passed away from MBC, "Well, at least she had another 7 years!". (He original and subsequent diagnoses were not widely known at our work place - I noticed the obituary in the paper.) Seriously??? At that point I was 39 years old... kind of hoping to make it a bit longer than that.
On the work issue, I am pretty lucky with my present workplace - I would say it is the opposite of discrimination. My executive is very supportive in keeping me working as long as I want to. If anything, they are too supportive and the problem is that they don't really understand the realities of what we deal with day in and out. I have a high stress, demanding position which creates some challenges as I don't have the stamina when urgent priorities land on my plate.
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vbishop,
Your post was very well stated. I feel the same except I have not accepted cancer or death yet. I agree and think it will be liberating one day. I'm just not there yet.
The meds cause so much fatigue. I wish friends would stop telling me everyone gets tired. I've decided to just not tell them the truth anymore when they ask how I'm feeling.
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Simone80 -
I am sorry your are experiencing fatigue with your meds. I hope it gets better for you! I don't think people understand the wide range of possible side effects and how every person reacts differently. I can hear them now "my friend had the same medicine and he/she is feeling great". Rolling my eyes!
Regarding my deal with death. I am not ready to give it up just yet. I'm just not afraid of it when it comes; I know I will go to a better place. Part of that is because my children are grown and on their own. I would still like to see my youngest get married or my grandbabies graduate from college. But here is my reality - I believe I will still be able to do that, just not in the way I had planned.
I haven't really accepted cancer; its more like I am resigned myself to the fact that this is my new normal. I do get angry at times or really sad when scans don't go my way. But I don't allow myself to stay there very long. Instead I look for things that make me happy. Sounds cheesy, but it works for me.
Regarding friends and their comments. I don't think they quite know what to say or what to do, especially when things aren't going our way. Invariably, they end up saying something totally insensitive "I can't handle this Vicki; where is the happy, happy, joy, joy Vicki? I don't know how to talk to you anymore". True conversation from someone I thought was a friend. This was after I found out my treatment quit working, my tumors had grown larger than when i was initially diagnosed, and we had to start at square one again. I felt defeated. I couldn't quit crying. That took me a couple of weeks to get my groove back. It was rough. But I learned a valuable lesson that day. When someone asks you how you are, sometimes they really don't want to know.
The other day, a team member asked how I was doing. This was at the end of a project team meeting, I was with people I had worked with for years, and I felt safe. So I told him,"I'm on my third treatment in 9 months; this treatment will eventually quit working and then I start something new again, and this process will continue until there are no options left or I die. This is my life". I no doubt told him more than he wanted to hear. Dead silence. Not a peep from anyone. I apologized for being a Debbie Downer, that I was just trying to be real. That's when it really hit me ... they can't handle real. Or maybe they finally realized what MBC means. Who knows. We are all still friends, but my reality was hard for them to hear.
I suspect all of us experience this in some form or fashion.
Hang in there! The peace and calm will come in time!
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vbishop, you struck a chord with me. I'm new into the MBC diagnosis and will have my first set of "re-scans" at the end of September. Am I nervous? A little. Is the fatigue I'm feeling because of the meds or is it the fear of the unknown? Is the cancer just eating me from the inside? Who knows?
By the way, I started reading your blog. Is it wrong to say I've enjoyed it? I think you know what I mean. Would love to see you dance in the chemo room! Damn the torpedoes! Full steam ahead!!!
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Sunshine99 - Love the name!
I am sorry you've joined this very special club. It's a ride, that's for sure. So many ups and downs. Wishing you far more ups than downs!!
MBC certainly raises the stress level, which leads to fatigue. Or it could be the meds? I am told radiation is an energy zapper. Hang in there. My sister told me the best thing I can do is to keep moving, whether I feel like it or not. I do my best to heed her advice.
I am not quite a year in and it feels like forever. Believe it or not, I am finally at a point where I don't totally freak out if they don't post test results fairly quickly. I guess it's because I realize I can't change anything. Or maybe it's because the last couple have not exactly brought the best of news. Regardless, I have to deal with the hand I'm dealt. It's taken months to get to this head space.
I started my blog for a couple of reasons. When I had thyroid cancer 20+ years ago, I felt very alone. I realized that we, as a family, did not communicate well. So I vowed to change that when I was diagnosed with breast cancer and now again with MBC. It helps a lot. It is therapeutic for me, keeps friends and family informed, and hopefully educates or inspires others. I am happy you stopped by to take a look and that you enjoy it! And yes, I know what you mean!
Wish you were in Texas so we can dance together during chemo! The nurses love it, some patients give me the thumbs up, others think I'm nuts. The beauty of it? I don't care! It keeps me moving, gives me something to do other than sleep during chemo, and makes me happy. Win/win!
Damn straight on full steam ahead!!
Reach out anytime ... the good and the ugly. I think we MBC ladies need to be available for each other. No one gets it quite like someone going through the same thing!
BTW - my PET results are in already! All tumors have shrunk except for one! Best results I've had this year! I will add to my blog once I get tumor marker results in.
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vbishop,
Woohoo on the good scan!
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Simone80 -
Thanks! Cautiously optimistic. This is the first scan in 2020 that showed the treatment working. I am still a bit reluctant to celebrate until tumor marker results are in. If tumor markers are down too, time to party. If not, time to discuss with doc. We'll see ...
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Simone80 -
Okay - Now we can celebrate!! Tumor markers are down, too! They aren't posted yet and I didn't write them down, but I know one went from 70+ to 45+. Best results I've had all year! We stay the course for another three cycles. Whoop!!
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That's great news vbishop! So glad you got good news! Time to go out and celebrate.
I thought I saw you post somewhere you are a project manager. I was a PM in the IT space prior to MBC. May I ask what field you work in? Not too many people understood me when I explained what I did. They used to always think I was some type of admin and a PM is much more than that.
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I work as a PM in ITS at the TX Dept of Insurance. Needless to say, I project manage my cancer. Drives my doctor nuts sometimes. I have a spreadsheet with all my bloodwork, a spreadsheet with all the PET results (tumor sizes, new ones, old ones ... it's still hard to keep track). I have been lucky enough to handle chemo well. I am only out 1/2 day three times a month. I know one day they will give me something that will knock me down. But we're not there yet! I have a lot of vacation time, comp time, and sick time. I don't get sick often .... I just get cancer
My projects range from server remediation, agency wide upgrade to Windows 10, finishing up two development projects (we're doing scrum ... love it), hardware refresh, etc. A lot of my projects are wrapping up. Not sure what they will be giving me next. I know we have an Office 2019 project and another server remediation project (someone else needs that fun) on the horizon. I tend to get the big ones that take a couple of years or so. My preference is development projects.
You are right. PM is way more than some type of administrator. Nice to meet another techie PM!!
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bishop,
I used to run storage and server refresh projects. It was a recurring yearly project, refreshing equipment that was out dated. It was pretty intense sometimes. I worked a lot of weekends. I decided to retire after getting my mbc diagnosis. I felt I couldn't keep up with the work schedule. I miss it sometimes.
I didn't work on a project that used scrum. My company did use it for software development projects though.
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Simone80- Those are intense projects! And go live weekend can be a bear! Congrats on tackling these projects!!
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I am new to stage 4, having only having found out about a recurrence of my TNBC in August 2020. I agree with so many of the things said here. I have found it much harder in fact to tell people about this- and in turn they just don't know what to say. A particular favourite is ' well you phone me when you want to - I wont phone you as you will be busy.' Busy- yes busy contemplating things that those who are well do not have to think about. Thanks!
Its a lonely place and although I am trying to keep myself busy and stay perky and positive, I feel - well you all know how I feel. So stage 4 veterans please keep the positive posts coming.
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Hi Lizzy
a year ago it was me in your position.
Take them on their word - call them yourself.
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I really wish people would realize when they offer assistance with the "call me when you need something" the likelihood of them being called is low. I'm not sure about you ladies but I have so many other things on my mind I have no clue what I need and when I do think of something I don't really remember who has offered and well I just don't like asking people for things...... Just offer something like "hey I'll make you dinner for your chemo days. Do you like bla bla bla" there done.
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what don't your friends iknow?
they seem to want you to have a "bucket" list much of which involves travel Thanks COVID
The little traveling I did pre-COVId was a nightmare. A bottle of pills (cost five thousand dollars a month) has to keep refrigerator cold. I no longer have fingerprints (thanks xeloda!) so getting through immigration is a nightmare.And of course they make a fuss about a port. Next time I'm odering a wheelchair just so I get get in the VIP line.
so much for enjoying a few things before I die.
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Hello Stage 4 friends,
recently graduated to this forum from the Kadcyla group due to my second full round of 6 treatments didnt work and now I have mets like confetti in multiple areas of my body. I will be starting ENHERTU in a week which is a brand new treatment FDA approved 3 months ago and miraculously approved by my medical insurance. I work P/T and my company blessed me by allowing me to keep my full benefits after working here 11 years. Very supportive.
On the "What you wish friends knew" When they ask what do you need? I just need someone to help us pay for someone to clean my house twice a month. My DH does what he can, but he also has a full time job and takes care of me. I have a house keeper who does the work, just need friends to rally and help contribute. Is that too much to ask?
AngelsGal
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AngelsGal, your comment allowed me to remember a lovely gesture of just that by my sister's friends when her DH was diagnosed w/lung cancer & she continued to work. They might have been able to afford it but wouldn't have. Her friends paid for 6 mos. She realized that there were better ways to spend her time than scrubbbing. Gift of time, most thoughtful gesture ever. Hope I can remember and provide that for someone going forward.
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Dear family and friends, at this point I don't care bout catching covid or anything else lol....I've got shots, not going to make a big deal if you dont and I'm not going to sit in my chair in a sterile bubble..let's hang out while I have good days and not talk about cancer either!
I floated the river yesterday with my brother. Heck with wbc counts.
I just laugh at silly advice. Eat more asparagus? Lmao.
Love me while I'm here and take me to the mountains even when I'm having down days and being a bitch.
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MK - keep your strength up so you an continue to hike & float rivers! Best medicine. I've found answering a few questions about how I'm doing works, then turn the conversation to food, drink, gardening or books works best.
I had to stop hiking & going to the gym when I was initally diagnosed and suffered bad side effects (drop foot, then HFS). Joined a class just 2 weeks before lockdown. I found it hard to exercise alone. You (hopefully) inspired me to try to get more activity so I can rejoin my hiking group and raft this summer.
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MKestral, what a great way to receive silly advice, by laughing at it! I plan to do that in the future when someone tries to Dr.Google me with unsolicited remedies.
And the “love me when I’m down and bitchy”—total yes to that, too.
I would like my friends to know I’m not some kind of confessional. Numerous women who know I live with mbc have “confided” in me that they’ve never had a mammogram. I am not sure how to respond when someone tells me that, so I just stare at them and say nothing. I do find it insulting, but I would not say that to them. I am not about to lecture grown women in their 50s and 60s who know the mammogram drill. The responsibility for their health rests on their shoulders. But why oh why tell me? I can’t figure it out.
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I have a good supportive friend and finally told her. She is feeling shocked and sad. I'm so sorry to have made my friend sad. She is a very good friend.
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NewDay - Supportive friends are the best! I have a couple that note when I'm seeing MO and having scans so they can ask me about it in case I fail to report promptly. They commenserate, then we talk about art, food, wine, dogs, weather, shoes.....She may need a little education about MBC (don't we all?) but try not to get frustrated and remember her inquiries are because she is interested in YOU.
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HI nopink2019. thank you. yes, what you said, so good and so true.
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MKestrel - I'm the opposite.
Dear family & friends, I will still be hyper vigilant about all infections. I've btdt wich ccomplications from low WBCs - hospitalized twice in 2018 for febrile neutropenia & I'd rather not do that ever again. Also I do not want to be knocked off this mortal coil earlier than is already happening.
Do not visit me if you aren't fully vaccinated or are having any symptoms.. Do not bug me to go to places which I feel are unsafe for my health. Respect my decisions.
Do not question why I'm still wearing a mask.
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