Does anyone NOT feel supported

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BritinCanada
Posts: 14
Joined: Tue May 28, 2019 2:28 pm

Does anyone NOT feel supported

Postby BritinCanada » Wed Feb 05, 2020 5:50 am

So background is my family and close friends live in another country. Live with spouse and small kids in Canada, a few good friends but not life long childhood friends type thing. Spouse has narcissistic tendencies. Stage 4, not on treatment.

I'm really struggling with my support system right now. I'm working on connecting with some other mums in my area that have or had cancer. Doing the regular therapy. I'm trying to get out there but I'm naturally shy.

I just feel like I'm not getting supported at home. My in laws try very hard but I'm not their kid so I never feel like I can just break down and sob kind of thing in front of them. They are amazing on a practical level and I know they will make sure my kids are ok but god what I wouldn't give for a hug from my dad (he's passed so not possible but you get the feeling).

My spouse seems to have totally missed the part where I'm sick. His life has not changed. In fact he's loving the fact his mother is always here and always doing stuff for him. He will literally sit on the sofa and call for her all day. I can't tell you how many times I've had to explain I'm tired from the cancer, from the treatment, the children. He just complains that I don't sit up with him until 2 watching his tv shows, then get up with the kids. He has decided where I will die, no discussion. A hospice (bring kids once a week) or I can fly back to England alone. When I tried opening up and explaining that I was sad the kids would miss out on special mother and child moments he told me not to worry. He would get remarried and they would have a new mummy. When I said this whole thing was so unfair he replied that it was just bad luck and the way life was. I was recently injured and woke up in extreme pain, I needed help to get to my medication. He wasn't there
I phoned him for over an hour, no answer screamed for him (next room). Thankfully my four year old heard and helped me. He told me I was fine and the worse that would have happened was I stayed there until morning. I was so scared laying there alone in the dark and in pain.

I've tried so hard this whole time to make him feel supported, made sure he had time away from me and the cancer, done things with his friends, encouraged him to talk about his feelings. But I just never get anything back. His friends never come over, they've never once offered the family help. But he thinks they will all support him when I'm dead.

I've been having some issues with hospital appointments and been trying to organize it. I desperately need a procedure ASAP but nothing's happening. He spent the day berating me about what I should be doing, which I had already done.

I know cancer is stressful for carers but this just seems cruel. He tells me to rely on him, to share my feelings but how do I do that when he turns against me. I don't understand how another person can be so unsupported of anyone, let alone someone they claim to love.

I'm trying to get out there and be with others but it's getting harder to do. My social worker doesn't know what to suggest at this point. My care team are horrified by his behaviour. I'm beginning to feel utterly alone. And honestly I have a chance at a clinical trial and this lack of support is really making me wonder if I can do it. I'm so tired, I just don't know I've got it in me to commit to something like that.

Sorry this turned out way darker than intended. I do have good days, most days are good days. My children are amazing. My team amazing. Great support from friends and family in England. I'm just really struggling with the lack of support in my own home.
Dx CRC July 2018 T4N2M1
Sucessfull surgery August 2018
12 rounds of Folfox. June 2019 begin folfiri
November 2019 begin cetuximab and irinotecan

Claudine
Posts: 385
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Does anyone NOT feel supported

Postby Claudine » Wed Feb 05, 2020 10:47 am

I’m so sorry you have to go through such difficult time at home on top of everything, Britincanada. Cancer can be such a train wreck. Not knowing your spouse personally it is hard to know what to say - it could be that he really does not know how to cope, that complete denial is his way of dealing with this (which does not help you!). Although his behavior and lack of empathy seem to go beyond that. I mean, it’s important to have the “difficult talks” but saying that he’ll remarry is incredibly callous.
I’m sorry you lost your dad, but could any of your relatives or British friends come to help you? Have you asked - I can understand that it can be a difficult thing to do, but close friends would understand.
I’m not sure what is going on medically for you (you’re not in treatment? Did treatment fail, are you waiting for surgery, for clinical trials?).
This forum is not going to replace a caring and supportive spouse, but it is a place to express your feelings and get the support of others going through similar, difficult times. Don’t hesitate to voice your anxieties here ❤️
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 4.4
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

Trying
Posts: 240
Joined: Sun May 13, 2018 10:11 pm

Re: Does anyone NOT feel supported

Postby Trying » Wed Feb 05, 2020 11:24 am

I am so sorry that you are not having the emotion support you deserve. Please feel free to message me Anytime.

Nicole
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy

BritinCanada
Posts: 14
Joined: Tue May 28, 2019 2:28 pm

Re: Does anyone NOT feel supported

Postby BritinCanada » Wed Feb 05, 2020 2:52 pm

Thank you for the replies. I have been very surprised by the attitude he has taken. Yes he may just not be able to deal with any of this and is lashing out. I've been pushing for him to get some therapy I really feel he needs it. It just feels like a constant battle and I'm not interested in that.

My siblings are planning to visit soon. Probably march break. I hope that will give me some emotional stability.

Right now I'm not on any drugs. Nothing curative is working, we are looking at clinical trials, I can't be on anything if I want to get on the trials. I've actually spent the last few days trying to schedule a procedure. If it doesn't get done I can't get on the trial. No one seems to be very helpful. My oncologist is on holiday and then is moving to another hospital so no one seems to actually be taking care of me. I know that's adding to my husbands stress, mine too. It's hard seeing the weeks get wasted when you only have so many weeks left.
Dx CRC July 2018 T4N2M1
Sucessfull surgery August 2018
12 rounds of Folfox. June 2019 begin folfiri
November 2019 begin cetuximab and irinotecan

boxhill
Posts: 554
Joined: Fri Apr 06, 2018 11:40 am

Re: Does anyone NOT feel supported

Postby boxhill » Thu Feb 06, 2020 3:39 pm

Your husband's behavior is appalling. In no sense of the word is he a caregiver. Does his mother realize how he behaves towards you and know what he has said? I'm glad that you have a social worker, at least.

I don't want to be nosy, but you you provide a little more information about your medical status? We might be able to offer some more practical advice about making things happen for you, alternatives, etc. I gather that you were diagnosed Stage 4 after surgery, and then had adjuvant chemo, which has been unsuccessful? How has it progressed, if it has? What kind of trial are you trying to get into? What kind of procedure do you need? A biopsy? Doesn't your oncologist have someone covering for him/her, or staff that can push for the procedure? Who else is on the team? They can't just abandon you because one person is leaving!

I'm sorry your emotional situation is so miserable. I hope that your medical situation is not as dire as you feel it is. I hope we can help.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Does anyone NOT feel supported

Postby mpbser » Sat Feb 15, 2020 7:19 am

I have little to no support system. From time to time I have family who help when it's an emergency, but, for the most part, I carry all the weight of caring for my husband who has essentially no family.

I thought that this forum and another (HAI pump people group on facebook) would be a great resource for help when desperate but that proved to be incorrect. In fact, at the worst of times, there were some really nasty, mean people who made some really nasty, mean-spirited comments.

Just sayin', don't get your hopes up and be forewarned.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

ronnieciao
Posts: 93
Joined: Sat Nov 08, 2014 1:58 pm
Location: Northern Italy and UK

Re: Does anyone NOT feel supported

Postby ronnieciao » Sun Feb 16, 2020 9:45 am

Dear BritinCanada

So sorry to read your post. Your husband's horrid behavior reminds me of my father. So many stories I could tell you. Now that my mother is no longer with us, the penny has dropped however, since no one wants anything to do with him, including his daughters (my sister and I)

The only thing I can tell you is that many people on this forum get it. I do, even if I was a carer. Feel free to vent anytime. And put yourself and your children first. Can your English family spend some time in Canada with you?

Oh, lastly please do ignore Mpbser- it's a troll who enjoys stirring up drama on this forum and others, then plays victim. Has been asked to leave many times but keeps popping up. There is always one.

All the best from a fellow Brit.

Veronica
DD of Mum, 53
Diagnosed CC Stage IVb, October 2014
Mets to liver, peri, ovaries, bones
Folfox + Panitumumab
5fu+Panitumumab
Folfiri + Avastin
Cetuximab monotherapy
Immunotherapy: Tecenriq (Atezolizumab) single agent trial: failed
Left us Feb 2017

boxhill
Posts: 554
Joined: Fri Apr 06, 2018 11:40 am

Re: Does anyone NOT feel supported

Postby boxhill » Sun Feb 16, 2020 10:31 am

I don't think it is fair to call mpbser a troll. Her husband has cancer. He has had some bad complications. She can be abrasive, to say the least, and IIRC she developed a strong dislike of the people at MSK, Dr. Kemeny in particular, and was vocal about it. This did not sit well with many of those who feel they owe their lives to her. She has stated that one shouldn't be expected to be polite in her circumstances. Some of us beg to differ. She also seemed to develop a bit of a conspiracy complex regarding MSK.

That does not mean that she is not suffering everything that people suffer when spouses are in the grip of this disease. And in some ways more, because she walls herself off from others who could help her.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment

KimT
Posts: 687
Joined: Sat Feb 20, 2010 8:53 pm

Re: Does anyone NOT feel supported

Postby KimT » Sun Feb 16, 2020 11:07 am

In my 11 years on this board, the ONLY discoed I have seen on this board has involved mpbser. She has a history of not playing nice with folks on this board or the group on Facebook. Let us not make this post about her as it is exactly what she wants. To hijack some one else’s post to get attention for yourself is just shameful.

To britincanada, this board has been a wonderful support for me since I found it 11 years ago.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
Nov 11 dx ovarian cancer

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Does anyone NOT feel supported

Postby mpbser » Wed Feb 19, 2020 2:36 pm

I don't recall ever being asked to leave this forum, but I am sure that people such as veronica would like to see that happen.

Also, I haven't had any negative interactions at facebook. The HAI pump people group (one admin in particular) just didn't like hearing what was going on with my husband's catheter dislodgement and how it was being handled. Pure censorship at its finest (not very good "science", imo).

What is a "discoed"?

And boxhill is correct. My husband does indeed have cancer (well, thankfully NED since March 2019) and nearly lost his life due to complications. During the worst of the worst, when I was at my wits' end with what was going on, there was at least someone here who said I was needy and all sorts of other nasty things. The same kind of attitude was prevalent when I first arrived here in spring 2017. Yeah, well, that's enough to make me "not play nice" as I don't really roll over when mistreated.

BritinCanada, I hope your husband is coming around. It is very hard to adjust to this awful disease. Sending good vibes your way.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

ccmc
Posts: 35
Joined: Mon Jan 21, 2013 9:13 pm

Re: Does anyone NOT feel supported

Postby ccmc » Wed Feb 19, 2020 5:31 pm

All members are reminded this is a support forum.
Comments which go off topic or devolve into personal attacks will be deleted without notice.
Colon Club Moderators Committee


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