This SUCKS, and we haven’t even begun to fight

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SilverWedding
Posts: 45
Joined: Sat May 18, 2019 5:54 am
Facebook Username: Cynthia Harding Marshall

This SUCKS, and we haven’t even begun to fight

Postby SilverWedding » Fri May 31, 2019 6:27 pm

Are any other apouses of victims on here?

THESE POOR VICTIMS OF CANCER HAVE IT WORSE, but being a spouse during this is second place. I’m between panic and tears, then knowledge-grabbing (I AM SO THANKFUL FOR THE HELP YOU HAVE GIVEN), and now I’m mad at everyone for not doing anything.

What’s worse is my conscience that I’ve been equally as ignorant about the suffering of others. So, I get that “they” don’t want to sit with me or ask too much or even be near me. I sit alone when everyone laughs with a spouse. Today sucked, and i don’t curse.

And we are still in the test and lab and mri and digital and probe and stick and iv with metal and iv with dye and iv with i don’t know what. This SUCKS!!!!!!

I’m so mad that it’s so hard to tackle this emotion and physical hurt together, and then come home to a mess while he is sick and i just don’t have a happy face to give. And then my PMS makes me cry and want to just destroy something.

The work never ends. But my hubby was laid off, so the money does. And i can’t take away any of his pain.

I am failing at being a help, and to put any attention on me is selfish.

If one more person who knows pops in with a chipper, uncaring almost gloating HEY - YOU HANGIN IN THERE, I’m going to lose it.

I don’t even know what i hope to get out of posting this.

I have chest pains and headaches and sleepless nights despite working myself to the bone and organizing all the appointments and schedules.

FAILING - I AM AO SORRY FOR ALL OF YOU VICTIMS AND YOUR FAMILIES.

My son got Summa Cum Laude and Bible Memory Awars today. I alone was there. I hate this.

Thief!

When i get extra money (what a joke), I’m giving a boatload to curing this living Hell.

Pardon my language and poor attitude.

I think i need advice. Or a drink.
5/19 - DH - 50s, RC 5+cm at dentate line extending to rectal vau
5/19 - No spread to liver/lungs, but 4 swollen lymph nodes
6/19 - Stage III
6/19 - Neoadjuvant Xeloda with radiation 6 weeks

Utwo
Posts: 255
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: This SUCKS, and we haven’t even begun to fight

Postby Utwo » Fri May 31, 2019 7:00 pm

Almost every hospital has a program of psychological support for spouses.
Could you ask them to refer you to such program?
58 yo male at diagnosis: T1bN0M0, 0/15 nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy #1: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy #2: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 "prophylactic" laparoscopic right hemicolectomy - bleeding, leak, infection
06/2017 CT scan, colonoscopy OK; CEA = 1.6
A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder and a lymph node

Lee
Posts: 5939
Joined: Sun Apr 16, 2006 4:09 pm

Re: This SUCKS, and we haven’t even begun to fight

Postby Lee » Fri May 31, 2019 7:39 pm

I am so sorry you are going through this, the beginning of this journey I believe in some ways is, the hardest, darkest days. The unknown is the scariest. Feel free to vent here, ANYTIME, because we do get it here what you, your husband and your family is going through.

It sounds like your husband is a stage III. I was diagnosed a stage III 15 yrs ago and I'm very much alive today. Many people do beat this cancer, unfortunately, they don't always stick around here, they want to move on . This thread was started 10 yrs go for stage III folks. I've got to update my info on this thread. Hopefully you can find inspiration in it.

viewtopic.php?f=1&t=10574&hilit=stage+iii+ned+how+long

Something that might help, see your PCP, explain what is going on, I'm sure s/he can prescribe something to help you deal with this challenging time.

Congratulations to your son.

Know that we are here,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Rock_Robster
Posts: 186
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: This SUCKS, and we haven’t even begun to fight

Postby Rock_Robster » Fri May 31, 2019 9:13 pm

Firstly, I’m sorry you’re going through this and there is no other way to say it - it sucks big time, for everyone involved.

This might be a controversial view, but it’s something that helped me. I am at stage IV with limited resectable metastasises (liver-only, aka ‘oligometastatic disease’) which means curative intent is still on the table. This is an unusual position for stage IV, and I feel extremely ‘lucky’ (under the circumstances) to be in this place. As someone said to me early on, there are thousands of people here who would kill to be in my position.

At stage III, this is a very beatable illness. Not to say that everyone does, but the odds are a lot better. It isn’t at all pleasant - radiation, surgery, chemo - all suck, with long-term implications, but survival is likely and (based solely on your signature) ‘terminal’ shouldn’t be anywhere near your vocabulary (referring to a different post/thread).

Now I know the “other people have it worse” argument doesn’t work for human psychology (eg ‘there are starving children in Africa’ never made a single child eat his/her broccoli); but I do believe in the neuroscience of gratitude, and I try to practice this daily - and it has helped me a lot.

You’re also welcome to tell me politely to shove it, as cancer is never good and everyone’s suffering is real.

Best of luck to you both.
Male 37; Melbourne, Australia.
10/2018 Dx 3.5 cm RC adenocarcinoma, 12cm from AV
Mod diff (G2), EMVI+, LVI+, PNI-
3 local LN; 4 liver mets, resectable
pT3pN1apM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection (open)
4-5/19 - 25 x pelvic radiation w Xeloda; complete metabolic response (TRG 3)
07/19 - ULAR (robotic), temp ileo. 1/27 LN positive
08/19 - Missed liver spot; plan to resect after chemo
08/19 - FOLFOX or FOLFORI x 4

Gravelyguy
Posts: 178
Joined: Thu Jul 05, 2018 6:03 pm

Re: This SUCKS, and we haven’t even begun to fight

Postby Gravelyguy » Fri May 31, 2019 9:38 pm

Absolutely vent whenever you need to. We all get it. I think my wife, the care giver had it way worse than me going through all this. There is something about being powerless is a scary thing.

My wife has said she feels like she has ptsd. I don’t doubt it. I agree that the unknown at the start of all this is the worst. The treatment is no picnic but at least you are carrying out a plan of attack. That at least helped me as the patient.

Hope this helps a little,

Dave
6/17 dx mCRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0

Rock_Robster
Posts: 186
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: This SUCKS, and we haven’t even begun to fight

Postby Rock_Robster » Sat Jun 01, 2019 2:02 am

Gravelyguy wrote:My wife has said she feels like she has ptsd. I don’t doubt it.

This is also very familiar - I’m pretty sure my wife should be in therapy for PTSD too after the way we got my diagnosis. It definitely hit her harder than me.

Also agree that things get considerably better once you’re executing a plan - I’m 6 months in now and just noticed today that I felt relatively “normal” for the first time in a while. Helps that I’m on a break though.
Male 37; Melbourne, Australia.
10/2018 Dx 3.5 cm RC adenocarcinoma, 12cm from AV
Mod diff (G2), EMVI+, LVI+, PNI-
3 local LN; 4 liver mets, resectable
pT3pN1apM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection (open)
4-5/19 - 25 x pelvic radiation w Xeloda; complete metabolic response (TRG 3)
07/19 - ULAR (robotic), temp ileo. 1/27 LN positive
08/19 - Missed liver spot; plan to resect after chemo
08/19 - FOLFOX or FOLFORI x 4

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ginabeewell
Posts: 272
Joined: Wed Oct 24, 2018 10:30 am

Re: This SUCKS, and we haven’t even begun to fight

Postby ginabeewell » Sat Jun 01, 2019 8:46 am

Absolutely as a caretaker you are being hit with this in a big way - I actually think I would rather HAVE cancer than be the one taking care of me.

Finding a great therapist was critical for me as a patient, and working with someone who had experience with cancer patients made a world of difference - I remember walking out of session #3 and feeling like a different person. I would urge you to ask around for someone who has experience in this space.

It gets MUCH easier once you’re executing a plan, which sort of pushes your focus into the day to day of side effect management in a way that’s helpful.

I’m about 8 months in now, and I can honestly say I feel more “healed” and at peace today than I did before my diagnosis. Credit goes to my therapist for that. I did have a sense that my cancer was here to teach me something from the very beginning, and I have found that to be very true.

When you’re ready, a book called Journey of Souls reframed *everything* for me, took away fear of death, and helped me to make sense of my journey. I live a more joyful life today, even as I am on chemo and awaiting what I hope will be a surgery to cure me. Maybe make a mental note to check it out in a few months. My therapist recommended it the day I told her I couldn’t stop obsessing about dying.

Good luck and we are here!!
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

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Maggie Nell
Posts: 1134
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: This SUCKS, and we haven’t even begun to fight

Postby Maggie Nell » Sat Jun 01, 2019 10:03 am

Totally sucks!

"Grace under pressure" is an admirable and valorized state of being however you've
got some righteous wrath going down, silverwedding, and I suggest you get
medieval on it's backside.

Round up all the cheap and fugly crockery and have a smashing good time. Then gather
up the pieces, which can be used for a mosaic. Purging those intense emotions is necessary
for your equilibrium, transforming the products of your rage into a work of art, is how Grace
shows up.

Be gentle with yourself and mind those self-persecuting thoughts - this is an FGO (effing growth
opportunity) that gets pretty rough. Befriend yourself as you're going through the fire of these
intense emotions that, you know, we've been taught to believe are not ladylike or feminine.... :roll:


This being human is a guest house.
Every morning a new arrival.

A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.

Welcome and entertain them all!
Even if they’re a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.

Be grateful for whoever comes,
because each has been sent
as a guide from beyond.

~ Rumi, translation by Coleman Barks
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
July 2019 : pending liver U/S, colonoscopy
rut roh

Claudine
Posts: 64
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: This SUCKS, and we haven’t even begun to fight

Postby Claudine » Mon Jun 03, 2019 10:11 am

Hi there SilverWedding,

As it has been said by others above, the early stages are very difficult. Once there's a plan in place, things do get better - for a while at least. When by husband was diagnosed last year I had a really hard time, seeing all those plans we'd made for "later in life" maybe fall apart, worrying about the children (young adults really, but still), I remember trying to go for runs to get endorphins but I could hardly breathe... Then treatment started and slowly a new routine fell into place. There have been several "kicks in the guts" since, but nothing like that first diagnosis - especially learning that once cancer is in the bones, it cannot really ever be cured; just managed.
I hope things do get better for you and your spouse, meanwhile don't hesitate to come here to vent!

XX Claudine
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (activity on PET scan, but no cancer found)
Xelox * 6, 05/2018 to 10/2018
6.7 cm hypermetabolic left adrenal mass 03/14/2019, 4.4 cm 05/21/2019
SBRT L4 02/2019
Folfiri + Avastin
CEA 58 03/15, 17 03/29, 10 04/12, 6.4 04/26, 5 05/10, 4.8 05/23, 4.2 06/07, 3.6 06/21, 3.2 07/07
Scan 05/21: Multiple small lung nodules shrinking or stable compared to 03/14 scan.

Pyro
Posts: 274
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: This SUCKS, and we haven’t even begun to fight

Postby Pyro » Mon Jun 03, 2019 11:01 am

ginabeewell wrote:Absolutely as a caretaker you are being hit with this in a big way - I actually think I would rather HAVE cancer than be the one taking care of me.


This x1000, again I agree with you. The only thing that helped me, relayed through a therapist, is I have to accept this is happening and it could end poorly. Terrible to admit but it’s true.
Aug 2015- Diag Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail, CEA @36
Jun 2019 - FOLFURI until I can’t stand it

User avatar
ginabeewell
Posts: 272
Joined: Wed Oct 24, 2018 10:30 am

Re: This SUCKS, and we haven’t even begun to fight

Postby ginabeewell » Mon Jun 03, 2019 11:15 am

Pyro wrote:
This x1000, again I agree with you. The only thing that helped me, relayed through a therapist, is I have to accept this is happening and it could end poorly. Terrible to admit but it’s true.


That book I referenced is what helped me to get to a place of peace about that: Journey of Souls.

The premise without going too deep and at the risk of dramatically oversimplifying is that you pick the life you want to live based on what you need to learn or how you need to develop your soul. If that’s true, it means I picked this life - knowing if it would be long or short, knowing that this cancer journey would be a part of what defined it. And at that point of choice, I was comfortable with the decision I made, confident it would give me the life I needed.

Going one step further: it also means my children picked THEIR lives, knowing what they would go through with me. Cancer didn’t “just happen” to any of us.

I have no idea why this reframing helped me as much as it did, but honestly it has been an emotional game changer for me. The book is so wild I still am not sure I believe it( but it’s made me feel so much better that I really want to!! And I would classify myself as a major skeptic about this kind of thing.
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

User avatar
Maggie Nell
Posts: 1134
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: This SUCKS, and we haven’t even begun to fight

Postby Maggie Nell » Mon Jun 03, 2019 1:10 pm

ginabeewell wrote:
That book I referenced is what helped me to get to a place of peace about that: Journey of Souls. [...]

I have no idea why this reframing helped me as much as it did, but honestly it has been an emotional game changer for me. The book is so wild I still am not sure I believe it( but it’s made me feel so much better that I really want to!! And I would classify myself as a major skeptic about this kind of thing.


Image

"Frisbeetarianism -- the belief that when you die, your soul goes up on the roof and gets stuck." - George Carlin


Whatever gets you through the dark night of the soul is your reality field. I am not a skeptic when it comes the the divine comedy..
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
July 2019 : pending liver U/S, colonoscopy
rut roh

tater
Posts: 104
Joined: Wed Jul 19, 2017 5:53 pm

Re: This SUCKS, and we haven’t even begun to fight

Postby tater » Mon Jun 03, 2019 5:44 pm

I agree that this sucks and none of use deserve to be in this boat. I remember being in your shoes taking care of my wife just over two years ago. As others have said right now you are playing defense and its one doctors appointment with more difficult news after another. Once you get a plan set out it does get better. You start to feel like you are on the offense and actually fighting. Its had to put the game face on all the time and I remember have to find a way to release the emotions. One thing that I remember and it is true is that this fight isn't a sprint its a marathon and you need to take care of yourself so you can be the care giver. Feel free to come here and vent, it made me feel better when I did.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 Coloanal Anastomosis, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18

Deb m
Posts: 497
Joined: Tue Jan 14, 2014 10:08 am

Re: This SUCKS, and we haven’t even begun to fight

Postby Deb m » Tue Jun 04, 2019 8:20 am

Hey, we all get it! This board is not only for advice, but is also for venting. You vent here as much as you need to.

I'm a praying person and I pray a rosary every single day. You and all the members of this board are included in my intentions.

Deb

User avatar
Maggie Nell
Posts: 1134
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: This SUCKS, and we haven’t even begun to fight

Postby Maggie Nell » Tue Jun 04, 2019 1:35 pm

Maybe I'll go truffling for that prayer thread from years back. Been a few years since
it last saw the light of the first page....
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
July 2019 : pending liver U/S, colonoscopy
rut roh


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