I am having one of those “I can’t believe I have cancer and I am having to go through all of this” moments!!!! Feeling a bit low with all of this chemotherapy stuff, more doctor visits, side effects, up and down 🎢 emotions!! You guys get me. Right? Sometimes it is hard to be strong and positive! Sometimes I just want to scream 😱!!! But then I come back to reality- my reality! I HAVE CANCER AND I AM GOING TO CONTINUE THE FIGHT! Stay strong 💪🏽!
My Cancer Reality Check: I am having... - SHARE Metastatic ...
My Cancer Reality Check
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Hotlantaphatz
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With you in all that you just stated here❤️👍
Having a few days of that, too. Prompted by my niece visiting with her family and realizing that everything I am doing on the vacation place we share she will undo. I can't stop her now, but I really can't stop her once I am gone. Poor me!
Before this emotional disruption, I was going through a period of inventory of all the changes cancer has made in my life. Some bad, and some actually not.
I don't think of this as a battle. I don't like the image of fighting with my body, or this invader of my body. I think of it as a biological fact, errant cells. I do my best to live with it and do the things that do not encourage it (really, just exercise) and encourage my oncologist to do her best, a challenge.
I totally agree. I don't see it as a fight either. Fights are something you win or lose. With metastatic stage 4 I'm not going to 'win' that's a fact. Like you I trust in the oncologist to treat the cancer whilst I do the best I can to manage my life with the disease.
Yes, I forgot that reason for not using the war metaphor. I will "lose." I sometimes yell at people who talk sympathetically about my "battle" that I am not a loser! That cows them.
On the topic of war metaphors, winners and losers, and how the cultural norm of putting a positive twist on every narrative can affect the sense of belonging.
“I’m not going to be cured’. How breast cancer awareness and support sidelines people with metastatic disease”
The Conversation, October 18, 2023
Available online free access
That was what someone said on Brian Lehrer's NPR show about the language around breast cancer. Exactly that: talking about a cure marginalizes people with mbc.
Or are you referencing the same thing? I couldn't find "The Conversation."
I have not seen that show. This was based on a research done by three University of Sydney academics (one of them has mbc). Let me put the link in.
theconversation.com/im-not-...
Thanks. More depth.
I am thinking whether to send that to the people who tell me I am brave and strong and cheer up when I get progression. I think the NPR one may speak to that better. This one maybe more for really close people.
I so get how you are feeling and you are right the ladies on this site are the ones who will understand. I have had enough of others saying ' you are so brave' I'm not brave I have no choice. Then the ones who say 'stay positive' I would like to shoot. We all know staying positive is best but its not possible 24/7 and unless you are rowing in the same boat (cancer journey) you shouldn't say that to anyone, to me its becoming a throw away comment people make when they can't think of anything to say. The friends I like best are the ones who say 'SHIT'. That says it all.
I am with you today. I am on the bad week & I was so tired today & I had so much to do that it was almost impossible. I did it but I am so slow in accepting all these changes that this is the first time in 3 & 1/2 years that I remembered -it is the 4th wk & that is why u are like this. In all the previous months I would keep thinking u are sick, u have the flu, maybe it is allergies maybe u have an infection. The day started off with the 3month inclusion for bones & the a bunch of things to do. Geez it is tuff sometimes but we are all facing this together & it so nice to communicate with a group that will understand . Take care all of you
Lou Anne
You take care to Lou Anne! xxx
Aaaaamen!
Yes! I actually don't mind people saying I am brave. I am. But I recently had progression. My old friend and health care proxy emailed me with an order to stay positive and how to do that! Irritating! How can I stop her? You cannot tell people how to feel. She isn't stupid, so why does she do that? And when I have had a knock back like that, I have to mourn a little. My other health care proxy texted something terse and hasn't made the time to talk to me. A person I look to who has a debilitating disease said something similar about staying positive, but noted how well I have done that and encouraged me to get back to that. Why that word -- positive?
Hi, I'm not sure what a health proxy is, I've guessed it might be someone you have nominated who has permission to get your health reports etc. At least the first lady tried to engage in a conversation with you, possibly doesn't know how to react, feels bad. So maybe if you talk with her things would improve. The other health proxy possibly needs to be given the heave ho, ( kiwi for kicked out). Being a health proxy isn't about just having access to reports, its about helping you in the best way possible to deal with this crap and she certainly isn't. When a pile of negative stuff is aimed at you the last words you need to hear are "stay positive", unless its followed by how well you've done up til now and that when you've had time to digest the now, you will rise again.
Maybe "health care proxy" is an American thing. It is a legal document and very important. They don't have access to reports. They have the authority to make decisions about my care when I am not able to, following my "advance directive" (like what extreme measures I might want). You must have something similar? I have no partner so it is friends, but my mother had one naming me. I mean, it is best even for family to have a proxy to make decisions. (Unfortunately, I just had in my hands a bad one a neighbor downloaded from the internet, and we signed and she notarized. My mother's lawyer had a much clearer and definitive one that I didn't know about -- until after I had done things that extended her life that she didn't want.)
I don't know how to explain to my first health care proxy. We have been friends for 65 years. She is always right. She went to Harvard Medical School to please her father, a surgeon I liked a lot, but dropped out after completing coursework and moved to NY and became an artist. Her brother died of ALS. She has been through a lot. I took her to first meeting with oncologist after PET/CT when I got the shocking news. She was not good about that, either. Way too blunt and pessimistic about my prospects. She defends and excuses the oncologist even when she is unfeeling and even deadly wrong (she messed up with a neighbor with mbc who died this spring). I think it is too much to fix. On the other hand, she got me to the ER when I had a kidney stone, and took me and my cat to the vet and waited for hours while the cat saw a neurologist. I have a cousin who is actually much better at this. She is the one I should talk to. She didn't want to be a health care proxy initially, but maybe she does now. She wants me to make sure the proxy is good on alleviating pain, even if it is lethal. -- She is very afraid of pain. -- I guess everyone brings their own stuff to this supportive role.
A question: is your first health proxy a doctor.
Just realised in NZ we have a thing called Enduring Power of Attorney (EPOA). You can do it for property and assets or for health, or for both, so that must be your health proxy
No, health care proxies are not doctors. They are basically people authorized by you to pull the plug when you are incapacitated (if that is what you want). The document can be quite specific, like no feeding tube, or no intubation.
POA is something else here. Someone with POA can make non-medical decisions. I had them for my mother also, so I could sign checks, sign some legal documents. You don't have to be incapacitated for them to act in your stead.
Isn't it amazing how different countries have different set ups. Our Health POA form can be set up by a lawyer but has to be activated by a doctor in the case of incapacity. Anyway all of this is no help to you in your current situation, but if you've been friends for 65 years you know each other well, the good the bad and the ugly!!, maybe its just the difficulty for her knowing her long time friend is in a battle that there is nothing she can do to make it right. Hope you have a day with some peace in it and in a few days things improve. We need good days.
We have government forms Form 4 for Advanced Health Directive and that includes Enduring Power of Attorney if you want to nominate people to speak for you when you can’t. I nominated my brother and sister-in-law with both to agree on my treatment. The form changed a bit this time so it doesn’t specifically mention pain relief that may lead to death but I wrote it in the available section and I added that I don’t want to use Assisted Dying either as euthanasia is legal in most states. My family know what I do and don’t want but I put that in to ensure doctors know that I wouldn’t find that acceptable.
The form needs to be notarised but if you want to refuse a blood transfusion you need a doctor to sign to say he’s discussed it with you and you understand the situation. It doesn’t need a lawyer or a doctor otherwise.
It’s quite easy to complete but it needs to be updated regularly. The form says every two years you need to review it and if you don’t want to make a change you initial the form. Otherwise you fill out a new form.
When an elderly friend was hospitalised she needed bowel surgery but she refused it so the doctors asked her two power of attorney’s to review her treatment plan and make a decision so they listened to the doctors advice and reviewed her AHD and told the doctors that they would not over ride her wishes which they were fully aware of as she was a long time friend. She’d lived for decades with schizophrenia and she didn’t trust doctors except in extreme circumstances. So she was discharged from hospital and returned to her assisted living facility to die in peace. The elderly lady was aware of her situation and accepted it. She was 86. That’s something that’s made easier by having an AHD but Queensland follows the Liverpool Care Pathway which means doctors can decide when they won’t offer ongoing treatment if there’s no quality of life achieved. She would have received the same options without the AHD most likely but it’s better to have one.
I hear you , I feel you and I support you ! What you are doing is exhausting ....alll the appts, side effects, scans and worries . Thank you for coming here to catch your breath. No "toxic positivity" from us - we are here for you and walk/ rest with you. Hang in there , I hope the rest of the week gets better.
Amen
It’s tough all right! I can’t believe it either 😡😡. I guess it’s a biological aberration and we were unlucky enough to get it. Bah humbug. Maybe tomorrow will be better🤞🤞🤞
We can all relate as we are all in the same boat wondering were the journey will take us. I always remember that God only gives us as much as we can handle, but I think I am being tested, rather we are all being tested. I am weaker and much slimmer, nearly ten pounds since July. You have got to try to be strong. We are here for you. Vent when you need to vent. Blessings
Amen!
I believe in you.
Thinking of you....the down days are awful, we are with you in your struggle.....hope you are feeling stronger soon, hugs K
And that’s why we’re here together. For knowledge, help and support. I thought it is what it is, there is so much better meds today. It a journey. I’m in pain all the time. I do what I can and what scares me the most is my husband dying before me. He’s such great support. I’m 71, he’s 79. We’re on vacation right now doing what we can. We’re in Maine and today is lobster day! Hugs and prayers to you and fight like a girl, wear your pink proudly to let everyone know you’re a fighter! Cancer can’t win!!! Hugs!
🦞 yummmmm! Enjoy!
My greatest fear is my husband dying before me, too! Having a loving supportive helpful spouse, or other family member, makes this journey so much easier than being alone would be! At least I have a plan, but it would not be easy--selling our big house, purging stuff, getting some things fixed, moving out...... There's a senior housing complex with a full range of living options and services I'd want to move to. Scary...and sad!
When we found out we sold our house, moved from Okc to Duncan ok from 2200 sf to 1000 sf gutted the 1955 house redid it and never looked back best to you!! Hugs
Having a plan is crucial. I agree with Sharon0122- - do it don’t look back! It will work out.
I see you! Every thought and feeling you have is valid. If you feel like screaming then do just that! The hardest part is living with so much uncertainty but I have found that focusing on what I am certain of keeps me mentally more at peace. Because we all know that even though the physical aspects of this are not easy and can downright suck it’s the mental aspects that buckle our knees.
Keep your power Hotlantaphatz! And that power is You!
And let's also remember this is Breast Cancer Awareness Month. Pink is everywhere! Makes me insane as the % of money spent on telling people to get mammograms against money spent on MBC makes me crazy.
How many of us were told at 5 years you are in the clear?
How many of us were given zero guidance on symptoms of MBC? Like where it may come back. At no following appt did I hear abt bone, brain, liver or lung. I was still feeling my breasts for lumps.
Yeah, October makes me crazy! On top of everything else.
Agree!!
Agreed!
Yup, my sentiments exactly. What gets me too is all the money spent by major organizations on adverts showing some “beautiful” side of cancer. Not in my reality.
And the week that the NFL wears pink shoes on the field....and places selling all kinds of pink merch....and if you buy we will donate 10% , but where does it go???
It's crazy but these made me nuts even 13 years ago when I was first diagnosed with Stage 2A. For TWO YEARS I had felt something...told them to check it out on mammograms and ultrasounds and I pointed to it down low on the lower left. And nothing came up. Seriously!
I then talked to my doctor after the surgery as I had heard that there was little funding for MBC and I was not even diagnosed with that and it STILL made me crazy Ready for this? "However, the biggest obstacle is lack of funding: only an estimated 2-5% of the funds raised for breast cancer research is spent on studies of metastasis." HOW nuts is that?
Thank you for sharing another reality check.
Same.
you go girl. I’m in the same boat. I get all the side effects, including brain fog, so even harder to manage it all. But I’m not giving up. I’m in Houston right now for second opinion. My onc basically said he doesn’t know what to do with me. I hope these guys know more.
Best of luck!
Hang in there💕. It is a tough journey and I have a lot of the feels you have. Theresa💕
I agree with you totally. I get so tired of people telling me to be positive and strong. They may never experience the fear and anxiety I live with every day.
Best wishes to you😁
Everything you said is how I feel also, so tired of the “be positive, stay strong” my favorite is you look great for having this for 6 1/2 years! My recent scan showed growth in the tumor and a lymph node involvement, when I tell people they say “ at least it’s only in the breast and the rest of the scan was clear” I want to scream !!
A friend of mine said, "the sicker you get, the better you look." WTF? So I want to look like hell.
100% with you! It is overwhelming. Just yesterday my oncologist made me feel so hopeless I wondered “what am I even doing here”. But we push on, persevere, pray for our sisters and stay positive the best we can. Prayers for you for a better week ahead and prayers for you all! ❤️🙏🏻
A verse to help in tough times.
Love scripture! Amen
One day, one hour at a time, sometimes that is how I get thru the day. Hope you can get stronger soon. Prayers for you
You are not alone, I think we all have those moments while on this journey. It does not seem fair that we have to spend so much time doing treatments, having doctor visits and suffering from side effects. It is not always easy to be positive and stay strong and remember to live one day at a time. You are going through a lot right now, way more than I have had to do so far, and you definitely have a right to sometimes let out your anger and frustration. Holding it all in all the time is not healthy. Being able to come back though from your anger to a place where you know you will continue fighting is important too and will help you survive. Keep up your faith and strength and know we are here for you. Sending you hugs and prayers.
You are so special and loved by the members of this board. You are actually extra special and I am so honored that our paths have crossed through this board. Hang in there. Cancer puts are lives on a roller-coaster. The bonds we all have make us one big family. Hugs, love and strength to you. Best wishes and prayers, Hannah
You are so sweet! Stay strong!!!
and you have the right to have those days. I think you said it best. Come back to YOUR reality. Fight on sis!! Praying for peace for you on those tough days and as always Healing. Hang in there 💕💕💕💕
We have to continue living. That’s our ultimate goal. 🙏🏻🙏🏻🙏🏻🩷🩷🩷
Feel the Fear and Do it Anyway!!
Aaaaaaamen! Thank you
Totally understand! I have those days too! We understand exactly what you are saying and feeling. I told my family I want a punching bag for these days. Some days are overwhelming! Sending love and hugs to you! Try to stay strong. I know it's hard, but it's ok to have bad days too!
🥊 bag! Great idea! Lol
Thanks so much , I needed that!! Just told the doctor I’m sick of cancer. Don’t want to deal with it🙃 I love when people tell me I’m so strong. What are the choices? You just have to pick yourself up and deal with it ! Then I remember all the things I do have and just keep on trucking 😘
Love it! Remember your blessings!
I hear ya!! Been there and bounced back from it and you will too ♥️
Well, I needed this today - thanks for posting. Staying strong!!!
Yes! It's how I have been feeling for about 2 weeks. More bad days than good, which is such a bummer because August and most of Sept, I was feeling so much better than in the previous year. My tumor markers have been consistently going down, other labs were improved...so why do I feel like crying so much. I just turned 50 and have upcoming scans this month. Hoping it's just some birthday blues or scanxiety... Prayers for us all.
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