Anybody got a spare instruction manual??

Please feel free to read, share your thoughts, your stories and connect with others!
JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Anybody got a spare instruction manual??

Postby JudeD59 » Thu Oct 22, 2015 11:23 pm

I want to start off by saying that my husband has been fantastic since my diagnosis. He has left work to go to most appointments with me and has cooked, cleaned, done laundry, and shopped like a champ, not to mention being a rock during the times when I was falling apart.

But after 33 years of marriage, I still don't have a clue what he is thinking sometimes.

We were sitting in my oncologist's office yesterday during the quick twenty minutes that you have to ask your questions and share your concerns. It was my first appointment with him since my surgery and we were right in the middle of discussing my unusually high CEA and getting pre-approval for a PET scan, plus I was sharing my anxiety about starting Folfox. And my husband holds up his iPad and shows the doctor a picture of the 1967 Mustang he had restored for me and they proceed to waste 5 minutes of my already short appointment talking about the classic cars they love and the shows they've attended. My mouth was just hanging open in shock.

I could never imagine going to an oncologist appointment where my husband was the patient and in between talking about the possibility that he is actually Stage IV instead of Stage II and how nervous he is about his future chemo, reach into my purse and pull out a paper and say, "Hey, doc, you ever try this corn chowder recipe? It's fantastic! Let me tell you how I make it." I mean what the heck? :shock:

When we left, I asked him what he was thinking. He said, "The doc mentioned at a previous appointment that he likes classic cars so I wanted to show him ours. I waited until the appointment was over." Um, no, you talked through the last five minutes and THEN the appointment was over. And just out of curiosity, why are you even thinking about a random comment the doctor made about liking classic cars while we are discussing my life or death illness? :?: :?:

I love him to bits, he is my best friend and soulmate, but sometimes I wish he came with an instruction manual or a youtube video or something that could help me figure out the gears and gizmos going round in his head, because they turn in a whole different direction than the ones in my head do.

Maybe there's an iPhone app I could buy...I know they have Spanish to English translator apps, so maybe a Husband to Wife translator?? Any app creators out there? You could make a fortune with that one.

Anybody else have a story about your spouse/caregiver/loved one that makes you go "I love you but what the ..."?

Sometimes ya just gotta laugh. :lol:

Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

Sams wife
Posts: 753
Joined: Sun Jan 11, 2015 2:49 pm

Re: Anybody got a spare instruction manual??

Postby Sams wife » Fri Oct 23, 2015 4:44 am

Must be a man thing. My hubby does that : )
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

User avatar
GrouseMan
Posts: 888
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: Anybody got a spare instruction manual??

Postby GrouseMan » Fri Oct 23, 2015 8:15 am

We all do that - Attempt to find common ground with people that are important to us, or that we will be spending time with. This includes doctors. We want to make it personal. Your husband is obviously a fixer. I think he was showing your oncologist that this is what I fixed, I can tackle tough jobs. At my wife's first meeting with her oncologist - I did something similar, but I showed him I have very common ground with him as I was once employed in anti-cancer drug research and know a thing or two about it. After that first meeting I rarely attend appointments with my wife now, as her doctor when making a change explains it very well to her so she and I can discuss it when she gets home. He is even willing to send me more details about a trial he was considering, but it turns out she had to do FolFiri first, before she would qualify for it which she is on now.

Sounds like your husband is a pretty great human being. Don't be so hard on him when he does things like this. 5 mins talking about a car isn't the end of the world. You are likely a little more remembered and interesting to your oncologist now. Not just another patient. Your husband was trying to make the oncologist more invested in your case.

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: Anybody got a spare instruction manual??

Postby Lydia666 » Fri Oct 23, 2015 9:39 am

You made me laugh!! But i agree with grousseman, from the outside, it seems nice of your hubby to try to connect with your doc. But i do get your point entirely. However it makes me think that at some point we should just live the time we do have. I mean maybe we are stage iv and we don't know, but hey- keep on living and laughing as nobody knows what next. I do realize though that this might not necessarily apply to the doc's appointments.

Sounds like u have a great husband though.
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

aja1121
Posts: 214
Joined: Sat Jun 28, 2014 5:12 pm

Re: Anybody got a spare instruction manual??

Postby aja1121 » Fri Oct 23, 2015 9:54 am

Just wanted to say, I understand completely. Have wished I had that manual many times in 25+ years together :)
05/23/14 DH dx Stage 3B rectal ca (age 41)
6/2014 chemorad | 10/2014 LAR, all nodes clean
FOLFOX x 10 | VATS/lung met | ileo reversal
09/15 local recurrence
10/15 colostomy
11/15 FOLFIRI x 4, major growth
02/16 tumor debulked
Stable ten months on Xeloda/Avastin
Growth on clinical trials NCT02024607 (BBI608 + FOLFIRI), NCT02817633 (anti-PD-1 + anti-TIM-3), NCT03175224 (c-Met inhibitor)
09/27/2018 started hospice
02/07/19 died

peanut_8
Posts: 2340
Joined: Sun May 25, 2014 1:31 pm

Re: Anybody got a spare instruction manual??

Postby peanut_8 » Fri Oct 23, 2015 10:21 am

I think that my diagnosis was more difficult for my spouse than for me. When diagnosed, I was in the hospital for about a month, and for the first week or so, was not expected to recover. This all just appeared right out of nowhere, and was a terrible surprise.

So while I was in the big house, my DH decided to swap out all the light bulbs in our house for the newer more efficient variety. This required a bit of research, which being an engineer, he was happy to do. I guess it was his way of relieving stress. Our daughter has a humorous story about the process. DH has narrowed the bulb selection down to 2 finalists, and marches her out to determine which is the better choice. She proceeds to point to the one on the right. DH stamps his foot a bit, and declared that is the wrong selection, and gives her a mini lecture on why it is the better choice. He was literally ecstatic when he discovered a bulb sale at Home Depot. I know my friend Justin Case has an impressive stash of toilet paper, well we have an equally large stash of light bulbs. :idea: :idea: :idea:

After completion of the bulb project, DH moved on to the next distraction. This involved the purchase of a sports car. Since it was a used machine, he had to travel a ways to get it. OK, fine, it's a nice car and all, butt was it something that we really needed at that time? It makes him happy, so I guess the answer is yes. It does have the added benefit of very little complaining when a new pair or two of shoes makes their way into the house.

Judy, I think we are lucky to have these guys. I know I wouldn't trade my for anything, and I think you wouldn't either. Best wishes to the both of you.
peanut
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Re: Anybody got a spare instruction manual??

Postby JudeD59 » Fri Oct 23, 2015 11:39 am

GrouseMan wrote:We all do that - Attempt to find common ground with people that are important to us, or that we will be spending time with. This includes doctors. We want to make it personal. Your husband is obviously a fixer. I think he was showing your oncologist that this is what I fixed, I can tackle tough jobs. At my wife's first meeting with her oncologist - I did something similar, but I showed him I have very common ground with him as I was once employed in anti-cancer drug research and know a thing or two about it. After that first meeting I rarely attend appointments with my wife now, as her doctor when making a change explains it very well to her so she and I can discuss it when she gets home. He is even willing to send me more details about a trial he was considering, but it turns out she had to do FolFiri first, before she would qualify for it which she is on now.

Sounds like your husband is a pretty great human being. Don't be so hard on him when he does things like this. 5 mins talking about a car isn't the end of the world. You are likely a little more remembered and interesting to your oncologist now. Not just another patient. Your husband was trying to make the oncologist more invested in your case.

GrouseMan


My husband is a great human being and I love him more than I can say. I understand and appreciate the noble intentions you gave about connecting and making the oncologist more invested in my case, but it also made me giggle because he shows pictures of that car to everyone who will stand still long enough to see them. :lol: He used to carry around a small photo album with before and after pictures to share with people (didn't have any pics of his four daughters in his wallet, but had plenty of the step by step process of restoring that car in that album), but now he has them on his iPad so it's much easier to share.

Don't worry, I didn't make him sleep in the doghouse over this. I just shook my head and asked what he was thinking. I'm usually pretty good at knowing his intentions and I am the official translator between him and my daughters all the time. It's actually a very sweet story--he restored the car in secret over the span of several years and surprised me with it since my brother had a Mustang convertible when I was in high school and it was the only car I've ever loved. When he first got it, it looked like goats had been living in it and now it's gorgeous. And he did it all for me, which makes me a pretty lucky lady. :)

I do think it probably made a nice break for the oncologist to be talking about classic cars for a few minutes. And I understand trying to connect and make doctors see you as a person instead of a patient. I do that, too, but I use humor instead of common ground and it usually works for me. For instance, for my last surgical procedure, I had all the medical personnel laughing in the operating room before the procedure started, including my surgeon, and afterwards he was a lot warmer and more relaxed toward me than he has been in the past.

Thanks for the reply and good luck to you and your wife.

Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

User avatar
kellywin
Posts: 492
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

Re: Anybody got a spare instruction manual??

Postby kellywin » Fri Oct 23, 2015 11:44 am

Judy - as you can see you're not alone. I wanted to cause severe bodily harm to my husband the entire time. They are "fixers", as Grouseman said, and this is not something they can fix. My husbands way of coping was basically to ignore it, pretend it wasn't happening, in his mind, if he ignored it, it would all go away. Of course he didn't really realize this is what his brain was doing at the time and I had no idea WTF he was thinking.

My favorite story is my daughter had turned 8 about 5 weeks after my surgery. Obviously, she wanted a birthday party, but I was trying to understand when I was going to start chemo and not knowing how I'd feel, we postponed her birthday a bit. After I got 1 round under me we scheduled her birthday (a sleepover with 8 girls). I scheduled it like the week after my infusion. I'm still fatigued from radiation & surgery and then bam, chemo made me feel like shit. So, I tell my husband, "look, we've got to get this house clean & picked up before the parents drop off their kids" - and a side note - none of my daughters friends or parents knew about my cancer. So I am picking up the house and my husband decides it's a great time to install a subwoofer in his 4Runner. Yes, and effing SUBWOOFER. Are you fricking kidding me? I keep coming out to the gararge, telling him I need his help picking up and he keeps saying "yeah, I'll be done in a few minutes". Um, right, he spent like 4 hours on that thing. At one point, I went out there, I completely lost it with him, telling him how pissed I was and telling him I was so fatigued that I could barely hold up my arms. His response was, "yeah, I'm tired too. I didn't sleep well". I think if I would have had access to a weapon at that moment, he wouldn't be around now. Yeah, tired is the same thing as fatigued. Sure.

Don't get me wrong, I love my husband. But, he's terrible with these types of things.

Men.
Kelly, mom 14 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only

cathy123
Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

Re: Anybody got a spare instruction manual??

Postby cathy123 » Fri Oct 23, 2015 12:24 pm

Kelly - I could have written your post. Different examples but same thing. I was recovering from surgery and listening to him complain about a cold. Can't push a vacuum around for 5 minutes, but instead spends hours working on sons pinewood derby car (half the time without son which really bugs me). Really? I agree that it is all about not knowing what to say or how to fix it so ignoring it instead and hoping it will go away. Our hubbies would probably get along well. :)
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

SugarBubbie
Posts: 239
Joined: Sun Jun 12, 2011 3:55 pm
Facebook Username: Rhonda Pinkston
Location: Texas

Re: Anybody got a spare instruction manual??

Postby SugarBubbie » Fri Oct 23, 2015 7:41 pm

HAHAHA.....you made me laugh. My sweet hubby is the best, butt he does stuff like this when we go to MD Anderson. Everyone there knows HIM more than me and I am the patient. Butt sometimes it helps because we get free parking every once in a while or a food ticket. They just all like him because he keeps us both grounded and positive. I don't think the nurses, oncs, etc see much of that.
so I think I'll keep him
DX Stage II anal cancer 2007 age 57
Radiation 6 weeks, Xeloda/oxilaplatin
DX Breast cancer Jun 2011 Stage3 one lymph nodes
Taxol 12 weeks FAC 4 tx, 31 radiations
5 year survivor certificate from MDA 2012 for anal cancer
DX triple neg bc oct 2015 4 rounds adriamyicyn, 20 radiations
"Positivity has no downside"

Nik Colon

Re: Anybody got a spare instruction manual??

Postby Nik Colon » Sat Oct 24, 2015 4:00 am

I'm very vocal, so if my hub were to do that I would have shut him up quick! Lol. But I do get you and others opinions and points. My husband is great allows me to have my time when I needed sleep whatever but there are certain things that I would get upset with but for the most part we don't really talk about it much I just kind of do my thing go to my appointment and such he works and does his thing and we pretty much don't talk about it very often which I prefer because I want to live as normal as I can.
My hubs scared of me he tells everyone, even b4 cancer! Hahaha. He always says "I have to sleep sometime"! It's funny, lol. He likes to tell everyone crazy stories which are based on truth but he embellishes. I bought him a shirt years ago that said "I make stuff up". It was bad in the oast, his coworkers actually thought I was really crazy! It was kinda funny at first, but when I found out they really thought that I wasn't too happy (he will tell stories and leave it and never say he's joking). So now, he still does, but not like he did, he's more honest but still embellishes, but doesn't make me the villain anymore.

ozziej
Posts: 239
Joined: Thu May 21, 2015 8:35 pm

Re: Anybody got a spare instruction manual??

Postby ozziej » Sat Oct 24, 2015 7:43 am

Yep, my partner is a 'fixer' too, so reading your posts helps me understand why he reacted the way he did to my stuff. Sort of like, " I can't fix it so I'll just ignore it and pretend it isn't happening". At the moment I get subtle messages that he's really angry with my surgeon for my ongoing bowel issues...I just know he'll be pissed off when I come back from my review next week with no magic cures :roll: .
I could do with a copy of that instruction manual too....
Jan :)
F 56 dx 11/14 Stage 1 RC (post EMR)
No neo-adjuvant or adjuvant chemo/RD
3/15 ULAR (open) temp loop ileo
5/15 ileo reversal
NED and hoping to stay that way!! : )

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

Re: Anybody got a spare instruction manual??

Postby justin case » Sat Oct 24, 2015 12:10 pm

peanut_8 wrote:I think that my diagnosis was more difficult for my spouse than for me. When diagnosed, I was in the hospital for about a month, and for the first week or so, was not expected to recover. This all just appeared right out of nowhere, and was a terrible surprise.

So while I was in the big house, my DH decided to swap out all the light bulbs in our house for the newer more efficient variety. This required a bit of research, which being an engineer, he was happy to do. I guess it was his way of relieving stress. Our daughter has a humorous story about the process. DH has narrowed the bulb selection down to 2 finalists, and marches her out to determine which is the better choice. She proceeds to point to the one on the right. DH stamps his foot a bit, and declared that is the wrong selection, and gives her a mini lecture on why it is the better choice. He was literally ecstatic when he discovered a bulb sale at Home Depot. I know my friend Justin Case has an impressive stash of toilet paper, well we have an equally large stash of light bulbs. :idea: :idea: :idea:

After completion of the bulb project, DH moved on to the next distraction. This involved the purchase of a sports car. Since it was a used machine, he had to travel a ways to get it. OK, fine, it's a nice car and all, butt was it something that we really needed at that time? It makes him happy, so I guess the answer is yes. It does have the added benefit of very little complaining when a new pair or two of shoes makes their way into the house.

Judy, I think we are lucky to have these guys. I know I wouldn't trade my for anything, and I think you wouldn't either. Best wishes to the both of you.
peanut

Actually, my wife, collects toilet paper, and shoes :roll: :roll: :roll:
I only get crap, when I leave the light on in the bathroom; It's expensive :roll: :roll: :roll:
Bro Nut
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

JDinNC
Posts: 771
Joined: Fri Jul 05, 2013 9:49 pm
Location: Murphy, N.C.

Re: Anybody got a spare instruction manual??

Postby JDinNC » Sat Oct 24, 2015 6:04 pm

I had been sent to my nurse friend to recoup after my lung resection. While I was gone, I husband wanted to surprise me by painting the TV room. Keep in mind my husband has no fashion or designer flare. When I got home he had painted the wall yellow and because I like green, he did all the trim a mint green.....needless to say...I was flashbacking to 40 years ago as these were the colors I used in my son's nursery. I convinced him that the yellow was too bright so we toned it down with a tan but I still have to get rid of the green trim. It's been two years...just the right amount of time for a change :lol:

Bless his pea pick'n heart for doing this...but he knows better. We made an agreement years ago that I was to deal with the inside and he had the outside....guess he forgot.

Jan
61 y/o female @ DX...........
T3N0M1
6/13 DX- stage 4
Sigmoid colon cancer.
One met to lung
7/13 colon resection
8/13 lung resection
7/17 four years....NED
8/18 five years....NED
MELANOMA
63 y/o @ DX
6/15 stage 2a
7/15 surgery on arm
7/15 NED
4/16 recurrance
5/16 remove metastasis from back
5/16. Started immunotherapy
8/16 discontinue treatment
7/18...PET scan...NED

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Anybody got a spare instruction manual??

Postby weisssoccermom » Sat Oct 24, 2015 6:40 pm

I can think of two very specific instances where I wondered 'what the heck are you thinking about?" The first (and I'm sure there are others before this) happened in 1991. (We were married in 1978 so we were NOT newlyweds...had three kids by then as well.) I had gone into labor with our 4th child...rather early....and everything was proceeding very quickly......maybe too quickly. The hospital had finally found me a bed (lots of babies born that day) and here I am, laboring, and hubby and my doctor are over looking out the window talking about Boston! Yes, we had both gone to college there and lived there after we were married and yes, the doctor was leaving the next day for a trip to Boston but geez.....I'm what 10 feet away from you both getting ready to have a baby...and the two of you are talking about the "T", Cambridge and who knows what else! I'm laying in the bed making the noises that a woman makes when she is about ready to deliver and I want my husband next to me....NOT over by the window. I didn't care if it was my 4th or my 1st....geez, he got me preggers....get the heck over by me and at least be by my side and not the docs.

The second incident happened at my first oncologist appointment back in 2006. We had already seen a few different surgeons, knew what we were dealing with and were, understandably, scared. The oncologist walks in and sits down to talk about what is next, test results, etc. We're about halfway through the first appointment and hubby notices the onc has an MIT ring...exactly like his. The two of them go off on this long, drawn out conversation about MIT...what years they were there, what fraternities they pledged, yada yada. Here I am...the cancer patient who has been just totally ignored while the two of them discuss their college years at MIT. Turns out there were there at the same time but obviously didn't know each other. They went into this long discussion about professors, what classes they took, blah blah blah. Fine to do it at some other appointment perhaps but at the FIRST appointment and when I am sitting there trying to figure out what the heck is going on with my life! Seriously? I was about ready to cry/scream or throw a hissy fit. Still can't believe how totally oblivious hubby was.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 134 guests