What subtopic are you?

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teachpdx
Posts: 634
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

What subtopic are you?

Postby teachpdx » Mon Mar 03, 2014 7:39 pm

We have many sub groups/topics - stage 4, exercise, etc. I think my subgroup is people going through cancer alone - meaning that you live alone and those closest to you are your dogs. People will be there push come to shove, and a few friends help out, but basically you're on your own. No spouse, mother, extended family. I do have my church family and I'm extremely thankful for them, but they don't replace family/spouse/close friends. I'm not complaining, I'm just wondering how many people like me are out there, or whatever you connect with. Love to hear from you. Kristi
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

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Nickmark59
Posts: 1033
Joined: Mon Nov 29, 2010 8:01 pm
Facebook Username: nickmark59
Location: Pittsburgh Pa.
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Re: What subtopic are you?

Postby Nickmark59 » Tue Mar 04, 2014 7:20 am

Our Gray Cat Poly was my cancer buddy she stayed with me whole time I was recovering and only left my side for the cat box and to eat. she still will always curl up on me when I fall asleep on couch and massage my stomach scars before she settles n my stomach either that or she just likes to soften things up before she takes a nap on me .
some how our pets know
CRC- IV 7-th yr Survivor -5 rectal tumors 1 bleeding with mets to liver
Rad. 36 treat.
with 6 Chemo 2-Ox.- 4 Fol.
surgery 15 hrs to resect colon and liver- Feb 08
follow up 6 chemo Folfox
www.darkinvestigations.blogspot.com

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vilca11
Posts: 730
Joined: Fri Feb 14, 2014 11:19 am
Location: Moscow, Russia; Baltimore, USA 1992; Vilcabamba, Ecuador 2012

Re: What subtopic are you?

Postby vilca11 » Tue Mar 04, 2014 11:26 am

Dear Kristi,

Your situation is heartbreaking in many ways and my heart is going out to you. I grew up alone in Moscow, Russia, my parents died when I was in my teens and I did not have any other family until my daughter was born. Right now I have my second husband, but I do not know who will go first - me or him, he is not well too and will not be able to help me if I need help. And my daughter is in London, while we are in the mountains of Ecuador, where access to help is problematic and even buying food good food requires long trips on the taxi. I do have very close loving and devoted friends, some from childhood, some from my 20 years spent in the States. But they are all far away and the only way we connect is Skype. So, I understand and feel you very well.

But I wanted to tell you that some amazing cancer fighters, like Pete43lostatsea here on the forum, consciously have chosen to be alone, left the family and concentrated on their fight. I too do not want my daughter to see the suffering that her mom will eventually has to go thru, so I am not planning to let her know when times come. I think, it is harder to see how much your loved ones feel, than going thru this terrible disease alone. I also want to say that I've chosen to stay pretty much isolated from our Hacienda community of expats here - I do not go to the parties, birthdays, into town to the bars/restaurants, to the concerts, spiritual gatherings, intellectual gatherings, etc. I have no idea why, just feels right this way....

And I too have a dog and a cat, and yes, they do know... Especially, cats. There were plenty of experiments done about their telepathic abilities - they read our thoughts. That is why vets have so many cancelled cat's owners appointments - cats disappear when it is time to go to vet and owner just can't find them in the house. And dogs know when the owner wants to take them for a walk without visual clues, when they are isolated from the owner and owner on the distance is told to think about taking the dog for a walk. Is not it amazing!

It is all sad, sweetheart, no questions. But one thing we all can try to do about it is changing our attitude to the situation. That is what I did. Then sadness goes away and the happiness of every new day emerges. You are religious (I am not, strictly speaking - my Russian education was in technical stuff - aircraft engineering, that truly interferes with the idea of believing in what could not be proven mathematically :P ), it should be easier for you to deal with these issues and tune your heart and soul into joyful acceptance. Look into that....
I do not know if what I wrote will make you feel a little better or not, but with all my heart I want that to be the case.

Love, vilca :)
11/2005 CC stage 1, F,50yo@dx
Mod dif adenocar, MSS, APC, TP53, CEAs1.6-4.8
1/12 1met liver@Vena Cava, RFA, 3oxi,11 5FU
8/13 2 mets same place,SBRT
4/14 2 Xeliri+Avastin
5/14 Nano Knife liver same 2 mets
6/14 2 Xeliri, ADAPT
4/15 PET, 2 same mets,Cryo Liver
5/15 MJ Oil, Herbs, Suppl, ADAPT
10/15 PET, same area, doubled in size, high SUV
10/15 RH, HAI, visceral involv., no LN
2/16 red FF, 50% red dose FUDR, CEA trends up
3/16 CT, PET, MRI L.Lobe all in small tumors
4/16 No acceptable options, going home

teachpdx
Posts: 634
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: What subtopic are you?

Postby teachpdx » Tue Mar 04, 2014 11:40 am

Thank you VIlca. I totally understand about wanted to deal with this disease alone. I do have a 20yo daughter but it was a bit too much for her. We are getting along fine now. I'm over my treatments and progressing fine, I was just curious as to how many other people out there are coping by themselves (pets not included). I have a 1/2 yorkie 1/2 schnauzer that I got the Oct before my diagnosis. When I went through my surgeries, etc she was amazingly well behaved for such a young dog. I do believe pets "get it" Please do not feel sorry for me because many times I have been thankful that I didn't have to deal with other people, especially with bowel issues and it leaves more energy for me, although at this point I'm ready to give some up. Peace kgd
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

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ktwmn
Posts: 350
Joined: Tue Aug 02, 2011 9:41 am

Re: What subtopic are you?

Postby ktwmn » Tue Mar 04, 2014 12:53 pm

Dear Kristi:

I too occupy the "facing cancer alone" subgroup. I like to think of it as the guerilla warrior group, not the pitiable victim club. I agree that sometimes the hardest thing is watching family or friends fall to emotional pieces or express pity. I have to admit that at times I do not react well when I am on the receiving end because here I am trying to work full time, deal with the things everybody has to deal with like paying bills, doing repair projects, fixing meals, going to the gym, and then all of a sudden I am sent hurtling down the abyss to that "cancer victim" role. As an example, when someone you see once a year tells you that you look good, because they have been told by martyric family of origin that you have cancer. Oh, it's the "cancer you look good greeting" I often blurt out, proving once more that cancer has made me (even more of) a b***ch. Or when family of origin or even work colleagues that heard through the grapevine about your dx want you to talk about cancer with them... Ummm, no, not your business! Can't we talk about something else? And then to have to explain that when you ask me questions about cancer (because it makes you feel better about yourself either to know information to pass onto others or to go through the self-congratulatory experience of offering meaningless "help" or because you have a sense of entitlement to my experience) I really don't wish to discuss these details with you...because although I think about cancer every hour of every day your bringing it up to me forces me to have to think of it AGAIN.

Sorry for the rant....But often those of us without a partner or "support person" have to be tough. Sometimes we come across as hard, maybe even mean. Sometimes well-meaning people come across in a way that makes us feel awful about ourselves. It's hard to explain sometimes.

And yes. Our pets understand and don't judge us. They love us for who we are.
Dx 7/11, Stage IIIc CC
12 txs Folfox 8/2011-2/2012
MSS, KRAS-mut G12D
NED until 3/2015, mets to liver and peritoneum
April-December 2015: 15 txs folfiri+avastin
Liver mets resolved; pelvic met remains
January-May 2016: folfox+avastin; allergic rxn to oxi
June-August 2016: 5FU+avastin
October 2016: looking into immuno trial
January 2017: maintenance chemo xeloda + avastin

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Maggie Nell
Posts: 1146
Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: What subtopic are you?

Postby Maggie Nell » Thu Jun 04, 2015 3:50 am

I'm in this subgroup.

I faintly recall that there was a belief going around a few years
back, that people who lived alone were at greater risk of developing cancer.

Melanoma specifically. Which is why I had friends with benefits to check if
I was developing any suspicious moles.

:roll:
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception (ouchies)
Lymph nodes: 0/22
T3 N0 MX
Pending colonoscopy 23 March 2021
Unexpected severe allergic reaction to the prep...big WTF!?
To be rescheduled...

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ktwmn
Posts: 350
Joined: Tue Aug 02, 2011 9:41 am

Re: What subtopic are you?

Postby ktwmn » Thu Jun 04, 2015 8:48 am

Little did we know our FWBs should have been checking other places!
Dx 7/11, Stage IIIc CC
12 txs Folfox 8/2011-2/2012
MSS, KRAS-mut G12D
NED until 3/2015, mets to liver and peritoneum
April-December 2015: 15 txs folfiri+avastin
Liver mets resolved; pelvic met remains
January-May 2016: folfox+avastin; allergic rxn to oxi
June-August 2016: 5FU+avastin
October 2016: looking into immuno trial
January 2017: maintenance chemo xeloda + avastin

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: What subtopic are you?

Postby skypup » Thu Jun 04, 2015 9:23 am

I'm in the subgroup.

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Rasputin
Posts: 73
Joined: Mon Jan 05, 2015 7:32 pm
Location: Dayton, Ohio

Re: What subtopic are you?

Postby Rasputin » Thu Jun 04, 2015 9:54 am

Count me in, but I treasure my solitude.
Dec 07 50 y/o 'scope dx CRC
Jan 08 surgery took 7" colon 7" in. T1N0M0 NED
09-13 'scopes NED
Nov 14 CT thumb sized mass near surgery outside colon
Dec 14 PET, biopsy dx malignant, no mets
Jan/Feb 15 25X Xeloda, radiation
4/9 LAR, perm. ostomy, cancer remaining?
5/22 start 8X XELOX
NED

PainInTheAss
Posts: 668
Joined: Tue Jul 02, 2013 3:08 am

Re: What subtopic are you?

Postby PainInTheAss » Thu Jun 04, 2015 2:37 pm

I have four children but really felt alone going through treatment. They weren't really caregivers or all that supportive and didn't even want to talk about it, much less go to all my appointments and be involved. I've been a bit wild as a divorced women preferring casual lovers over anything very serious. I had a string of lovers I would see for a period of time or even several at the same time since commitment-phobe men tend to only want to see you about once a month and I steered clear of men looking for "the one." My kids were my life and I wasn't ready to meet anyone who would change that. Men were "on the side" in my spare time.

But during treatment, I really noticed how many couples were there in the office while I was there alone. I went to all my radiation treatments alone. My daughter drove me to surgery and dropped me off. I stood at the preop doors with tears streaming down my face fealing so terrified and so completely alone. The doors were gigantic, like 12 feet high it seemed. I felt like a small child.

My daughter came to visit twice and was my only visitor while I was in the hospital. I really wasn't up for talking and fell asleep while she was there.

She picked me up and the two of us lived together. She went to the store a few times for me, but she was gone almost all the time and I had to get out of bed and make my own food. I spent most of my recovery alone. She told me that it was really depressing being around me and she didn't like staying at the house. I was like a weak, frail skeleton who could barely walk and she didn't like seeing me like that. I really looked sick even though none of this was from the actual cancer.

I also went to my chemo infusions alone. I took a cab after the first one because it was so hard to drive. I think one of my kids drove me and dropped me off once or twice. They didn't stay.

This while process made me realize that I no longer wanted casual relationships and the next one, I want someone who really gives a sh** about me and would be there for me for something like this. Obviously, my kids aren't. They failed miserably at providing support. I didn't like having to face this so alone, but I made my choices and it is what it is.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

Kiwi Debz
Posts: 167
Joined: Fri Aug 22, 2014 9:42 am
Facebook Username: Deb Goldby

Re: What subtopic are you?

Postby Kiwi Debz » Thu Jun 04, 2015 4:47 pm

I am in the sub group too .....

Deb
6/14 DX mCrc stage 4
7/14 R. hemicolectomy; 4/17 LN; liver res. peri met; repair to illiac artery
8/14 FOLFOX
10/14 PET recurrence LN; liver ? Peri met Continue FOLFOX
12/14 PET: stable .Liver only! FOLFOX
02/15 Liver resection. NED
03/15 foundation One testing - BRAF mutant
05/15 progression; Hilum node; both lungs?
08/15 NED !!!!
Age 51 Mum to Tom (RIP) and Jose 18
KIA KAHA - Be strong!

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: What subtopic are you?

Postby justin case » Thu Jun 04, 2015 5:25 pm

ktwmn wrote:Dear Kristi:

I too occupy the "facing cancer alone" subgroup. I like to think of it as the guerilla warrior group, not the pitiable victim club. I agree that sometimes the hardest thing is watching family or friends fall to emotional pieces or express pity. I have to admit that at times I do not react well when I am on the receiving end because here I am trying to work full time, deal with the things everybody has to deal with like paying bills, doing repair projects, fixing meals, going to the gym, and then all of a sudden I am sent hurtling down the abyss to that "cancer victim" role. As an example, when someone you see once a year tells you that you look good, because they have been told by martyric family of origin that you have cancer. Oh, it's the "cancer you look good greeting" I often blurt out, proving once more that cancer has made me (even more of) a b***ch. Or when family of origin or even work colleagues that heard through the grapevine about your dx want you to talk about cancer with them... Ummm, no, not your business! Can't we talk about something else? And then to have to explain that when you ask me questions about cancer (because it makes you feel better about yourself either to know information to pass onto others or to go through the self-congratulatory experience of offering meaningless "help" or because you have a sense of entitlement to my experience) I really don't wish to discuss these details with you...because although I think about cancer every hour of every day your bringing it up to me forces me to have to think of it AGAIN.

Sorry for the rant....But often those of us without a partner or "support person" have to be tough. Sometimes we come across as hard, maybe even mean. Sometimes well-meaning people come across in a way that makes us feel awful about ourselves. It's hard to explain sometimes.

And yes. Our pets understand and don't judge us. They love us for who we are.

Yes, butt
When you are with a partner, cancer be brought up many more times, than a casual encounter, making relaxation impossible :roll: :roll: :roll:
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

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Maggie Nell
Posts: 1146
Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: What subtopic are you?

Postby Maggie Nell » Thu Jun 04, 2015 9:54 pm

..
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception (ouchies)
Lymph nodes: 0/22
T3 N0 MX
Pending colonoscopy 23 March 2021
Unexpected severe allergic reaction to the prep...big WTF!?
To be rescheduled...


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