People

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saltygirl
Posts: 39
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

People

Postby saltygirl » Mon Aug 02, 2021 12:10 pm

I wonder if you have similar experiences. I keep my cancer private. But my husband told 1 couple. They have promised we would go out for dinner. I have reached out many times. And the wife ghosted me. I even texted her that I don’t want to talk about my cancer. Just to have fun and good time. Why are people so weak? They do have 50% chance of having cancer in their lifetime. If you met me, you would think I am the healthiest person in a room. Fit, always well put together 45 year old:-)


IsmailMehdi
Posts: 36
Joined: Sun May 02, 2021 5:52 pm

Re: People

Postby IsmailMehdi » Mon Aug 02, 2021 12:59 pm

saltygirl wrote:I wonder if you have similar experiences. I keep my cancer private. But my husband told 1 couple. They have promised we would go out for dinner. I have reached out many times. And the wife ghosted me. I even texted her that I don’t want to talk about my cancer. Just to have fun and good time. Why are people so weak? They do have 50% chance of having cancer in their lifetime. If you met me, you would think I am the healthiest person in a room. Fit, always well put together 45 year old:-)


Same experience here Salty. It’s the conversation killer as soon as i mention it to anybody. The only exception is people that have been or are currently diagnosed with cancer. Then we can talk for hours. My best friend stopped talking to me out of sheer awkwardness. It’s like we no longer have anything in common. I don’t feel bad, or hold it against them, what do you say to someone that is basically a hostage to this disease ? Other than offering to help or offering prayers. I’m just hoping that with time things will be more “normal”.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 signet ring-cell carcinoma
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27

saltygirl
Posts: 39
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: People

Postby saltygirl » Mon Aug 02, 2021 2:37 pm

Thank you both. There is no wrong or right how we cancer people are responding to our situation. I personally don’t like to talk to friends or family about my cancer. Unless I really feel like. I like to live as normal as possible. But it is interesting to notice. That a lot of people don’t know how to respond. Maybe our situation is their nightmare. Once I read a wealthy Dr / businessman said: We all know we are going to die. But nobody believes it. It’s like healthy people live their lives not believing that will die. We have faced death. So we know that very well. Maybe healthy people just don’t want to even think about it. He also said having stage 4 cancer that non of his $ means anything anymore in his situation. It’s his family and close friends who have the deep meaning. Sad he never even had family on his own…

Blakeacw
Posts: 11
Joined: Thu Nov 05, 2020 12:24 pm
Location: Atlanta

Re: People

Postby Blakeacw » Mon Aug 02, 2021 2:58 pm

I was pretty open with my cancer situation once I was staged and had the resection. I didn't want to hide it from others and wanted to be OK saying I didn't feel great. But I wanted to be normal , exactly as you described - not make it the centerpiece of everything. A close friend was going through breast cancer just a cycle or two ahead of me and we could trade notes and support each other in a different way - kind of the way this board works

One set of friends disappeared and others stepped up in incredible , small , thoughtful ways.

Some offered prayers and support , some told very normal or disturbing stories about cancer in their families - I guess trying to relate.

At the end of the day , we all cope in our own ways , I'm still figuring it all out.
Colonoscopy 8/2020 - cancer diag. 9cm mass
Colectomy 8/2020 - successful -margins cleared
2 /16 lymph nodes -m1 tumor deposit
Pt3 n1b

Port installed 9/20
Folfox - 10/12 rounds complete

CEA
8.6.20 - 8.70 Prior Surgery
9.4.20 - 3.00 Post Surgery
4.14.21 - 2.70

CT Scan 3/18/21 - NED
Signatera 3/16/21 & 6/16 - NEGATIVE

zephyr
Posts: 323
Joined: Thu Aug 18, 2016 7:31 am

Re: People

Postby zephyr » Mon Aug 02, 2021 4:41 pm

The stories of friends and family disappearing after a cancer diagnosis are too many to count. That said, and just to offer a different perspective, it's my experience that this whole COVID-Delta thing has people rattled. I have family & friends who wouldn't hesitate to see me before but are now wary so our contact is pretty much limited to phone and text. They rushed out to get the vaccine as soon as they could, one person even made a 2-hour round trip twice, to keep from infecting me or others with compromised immune systems. COVID scares me more than cancer so I've also been vaccinated but the jury's still out on how well the vaccine will work for cancer patients. Now that studies are showing that vaccinated people can carry the same viral load and could transmit the virus even if they don't get sick, and with my blood counts dropping, family/friends are afraid to be around me again because they're afraid they might be carriers and not know, and they don't want to risk getting me sick. I don't want to turn this into a COVID thread, please - let's just all agree to disagree - it's just that if this is what I'm experiencing, maybe you are too...?
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 F/U colonoscopies, all clear
Jun-2016 CRC during followup colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Dec-2020 Progression, considering all options
Mar-2021 Forfiri/Avastin

saltygirl
Posts: 39
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: People

Postby saltygirl » Mon Aug 02, 2021 10:04 pm

Wow. Today I learnt once again how some people are. Neighbors next to us live in 7,000 sq home. We had some wood cut. And had it ready for pick up organized along our property. The pick up failed. So I texted the neighbors apology that we will resolve it ASAP. It was not on their property or blocking anything. It was on our property. They know about my health issues. Yet they still called on us to our association. I feel like moving out of USA tonight. Or start having topless pool parties:-)

stu
Posts: 1518
Joined: Sat Aug 17, 2013 5:46 pm

Re: People

Postby stu » Tue Aug 03, 2021 3:07 am

That’s beyond mean Saltygirl , especially when you went to the effort to inform them of something out of your control !
Not sure if it’s just me that is sticking to the old values of not kicking someone when they are going through tough times . We draw close not away ! We communicate and ask how we can be of assistance and try and assess what is best for the person . We pull back when they need time to process things themselves or spend time with family .
We get it wrong on many occasions and don’t see or meet the right needs but we try .

That’s all we have as humans really ! But if they were my neighbours I would remain polite but take a step to the side and move swiftly on . They have issues you can’t help them with .

Zephry makes some good points about compromised immune systems ! It pained me greatly when my friend was dying in the height of covid . As her treatment was drawing to a close I was terrified of getting her family contact traced and not allowed to see her if she went into hospice . When in the hospice I sat on the patio on cold October nights for two hours in the dark as she told me her hopes and fears for her boys ! When I got up my legs nearly left me as we were speaking through a crack in the door ! It brings tears to my eyes as it was so hard to see her with such a barrier for the last time !

Covid is most certainly creating another level of concern when trying to be a help to our friends .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

saltygirl
Posts: 39
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: People

Postby saltygirl » Tue Aug 03, 2021 9:02 am

Thank you Stu. They are retired and have nothing else to do:-) We have accommodated them before just to keep good relations. But will not anymore. Our property is slightly on a hill. So during really have rain water was coming from our property to theirs. It was just on the side far from their home. We invested $$$ to help resolve the issue. Well, anyway… thank you for letting me vent. We know they called on us because we were told by the HOA.

User avatar
horizon
Posts: 1636
Joined: Tue Apr 12, 2011 10:10 pm

Re: People

Postby horizon » Tue Aug 03, 2021 9:05 am

I was *very* private about my diagnosis. I only told the closest friends and coworkers. There's some that still don't know I ever had cancer. I just didn't want to be treated differently than I was before.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 10 years NED). Is this real life?

saltygirl
Posts: 39
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: People

Postby saltygirl » Tue Aug 03, 2021 9:06 am

Zephyr,
Thank you for the perspective. I am vaccinated. My whole family is vaccinated. I have to be honest that I am not scared of covid. I do take covid seriously wear a mask, vaccination. But will continue living my life as much as possible. Of course have followed and will whatever the local government will recommend. Most people around me are not scared of covid. In fact many are complete opposite. And that’s not good at all. There are a lot of antivax movement in a state where I live.

saltygirl
Posts: 39
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: People

Postby saltygirl » Tue Aug 03, 2021 9:10 am

Horizon,
I am the same way. And I think it has been a smart decision. Because it seems that many people will turn their back, cross you of their list. I do admit that I don’t have deep relationships. I have relocated a lot last 25 years different countries etc. Probably close friends would act differently. I have a lot of friends but I wouldn’t call them close. I have one and she knows. She has been there for me.

saltygirl
Posts: 39
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: People

Postby saltygirl » Tue Aug 03, 2021 9:46 am

Blakeacw,
Thank you. Good that you have some positive experience. I guess my situation is different. Because I have relocated many times during last 25 years around the World. Didn’t expect to get cancer at 45 with this lifestyle:-)

JMRWife
Posts: 71
Joined: Mon Oct 05, 2015 9:41 pm

Re: People

Postby JMRWife » Fri Aug 06, 2021 5:01 pm

Errybody knows I have cancer, including my colleagues. If it comes up in normal conversation, it comes up. I've never had anyone treat me differently than they did before.

I just don't care who knows, LOL. But I've always been an open book. And at my age, I just don't care what anyone thinks.
Age 58.
4/27/2021 - Dx obstructing "apple core" sigmoid tumor at 30cm. MMR proficient. 4/28: Diverting colostomy.
Started neoadjuvant Folfox 5/18; CEA 107.
Aug 11: 7 rounds Folfox completed. CEA 3.2.
Pathology: COLON, SIGMOID (COLONOSCOPY): -- INVASIVE ADENOCARCINOMA, MOD DIFFERENTIATED

Clinical stage stage IIA. (negative lymph nodes). By imaging at least clinical stage 3 (abnormal lymph nodes on CT), but given negative mesenteric lymph nodes biopsy - considered at least stage 2.

roadrunner
Posts: 163
Joined: Sun Jan 12, 2020 8:46 pm

Re: People

Postby roadrunner » Fri Aug 06, 2021 6:00 pm

JMRWife: My approach as well. Particularly with my kids. I didn’t want it to be a sad, terrifying mystery for them. Yeah, it’s hard, and it may suck big time in the end (I hope not!), but I want them to know it’s just part of life on this floating rock, and my life has been, and is, grand anyhow. As far as the general public goes, well, I couldn’t care less. But similar to you, privacy has never been my gig.
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
neoadjuvant chemorad 11/19
4 rounds of FOLFOX July-August 2020
ncCR found 10/20; multiple biopsies negative
TAE 11/20, small amount of tumor removed, lung nodules orig id’d 6/20 stable Nov 2020
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
Stable in 6/28 scan.


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