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How to know real sickness/fake #196962
08-19-2018 06:09 PM
08-19-2018 06:09 PM
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ConnieT Online OP
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I've only been here a few days and since this is anonymous for the most part, I feel I can be a little more honest and hoping for some guidance.

Background: husband has been verbally/emotionally abusive for a couple of decades. He probably could be diagnosed as a narcissist due to continual lying/deceiving/controlling. So here's my question: can a patient one week into treatment (1 chemo and 5 radiation) be an invalid one minute and unable to do anything and a few hours later be driving 5 miles to town to go get himself some fast food to eat? I don't know what to believe as there is such a history of lying.

thanks for all the advice i've gotten so far.


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: How to know real sickness/fake [Re: ConnieT] #196963
08-19-2018 07:16 PM
08-19-2018 07:16 PM
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Posts: 317
alabama
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KristenS Offline
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alabama
I'd say yes, it's possible he's lying if that's his history, but also yes, you can actually feel that crappy even one week into treatment ... and then if a craving actually sounds good, you'll jump on it just because everything else is so rotten. And yes, it's totally possible to be both ways at once. I've got a friend who recently managed to leave a relationship like that, and I had no idea what all it had been like for her till she was able to tell me after ... so I can totally believe your story as a possibility, because her husband had serious illness during that time and exhibited similar behaviors. But having been through the rads and chemo ... yeah, I could see that too. Except I didn't feel much like driving ... I'd probably have asked someone to pick it up, if they were going by it. (We have places pretty close to home.)

I am very sorry you are in this situation as caregiver. Is it possible to find respite caregivers in your area? When I had my feeding tube, I was assigned a nurse to check on my nutrition (maybe nurse isn't the right title, but it's close enough), and she actually came to the house to set me up with a IV pole to hang the bag from, showed me how to use formula, and set up an order for delivery of formula. I didn't use a lot, so she didn't come by much to deliver more, but she was there if I needed her. There are probably other sorts of helpers ... the drivers from the cancer society, maybe others? It won't stop any behaviors, but at least you'll get a break from some of it.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: How to know real sickness/fake [Re: ConnieT] #196964
08-19-2018 08:25 PM
08-19-2018 08:25 PM
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Posts: 222
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ConnieT Online OP
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ConnieT  Online OP
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thank you for sharing your experiences and believing me!

I'm trying to keep my feelings (good and bad) in check and just take care of him physically.

This is all new territory for me so I appreciate all the information.

Respite....doubtful as we live an hour from the hospital he is being treated at but I have lined up someone to drive him the 2 days I will be in real estate classes. I am also continuing with my life with friends, Bible studies, notarizing jobs, etc. I have to stay sane and while he has not been a part of our lives (I raised 3 kids by myself, one still at home in grad school), he is suddenly so bored, he's trying to act like my best friend and hovering. I'm not allowing him to pull me in based on sympathy. I am empathetic but I'm looking at it like he's one of my hospice patients I volunteer to take care of. It may sound cold to some but I have to take care of myself.

thanks again! what a wonderful resource this has been for me!



Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: How to know real sickness/fake [Re: ConnieT] #196967
08-20-2018 06:04 AM
08-20-2018 06:04 AM
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ChristineB Offline

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Oh Connie, I sure feel for you!!! Nobody should be treated like that. Unfortunately cancer can bring out the best and the worst in some people. Unfortunately it is very possible he is feeling terrible already. But its unlikely in my opinion anyone who is feeling that badly is able to drive to get fast food. It could be a tv commercial that prompted the craving or maybe he thought having some fast food would be easy to eat, who knows. You are correct, you need to take care of you so Id advise dont waste your time trying to figure him out. During treatments anything he can eat is a good thing so at least he's doing something positive that he needs to do by eating high calorie fast food. Id be very surprised if he was capable of doing this in another week, 2 or 3 as the effects of treatments will really begin to hit him. If your husband is taking strong pain meds he shouldnt be driving. At that point the further along he goes with his treatments the more difficult it will become. If hes having a good day, get him to sign the HIPPA permission forms to allow his doctors to talk to you about his case. You do not want to be towards the end of rads and not know anything or how to handle him if he is very ill due to only going by his shred of reality he's telling you. Plus, many patients will lose their voice for a little while making communication even harder.

Hang in there!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: How to know real sickness/fake [Re: ConnieT] #196971
08-20-2018 09:19 AM
08-20-2018 09:19 AM
Joined: Aug 2018
Posts: 222
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ConnieT Online OP
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ConnieT  Online OP
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Joined: Aug 2018
Posts: 222
thank you Christine.

I have the nurse calling me today as I'm having an allergic reaction to all those chemicals in him. I am highly sensitive to chemicals and spent years sick because of them...my brother had the same problem, daughter as well. Of course, to the husband, I'm overreacting and making it up. I kept thinking about how itchy I was every time I drove him to treatment, itchy to the point of raw skin on my face and hands and after his comment about how chemicals are making him queasy, I thought.....I don't use chemicals in my house for this reason. He must be smelling himself. As a realtor, unfortunately we are having to deal with this in our clients to the point of several nearly passing out when entering certain homes. Another realtor and I scope out the houses now to warn the realtors which houses have chemicals and mold...we are reactive so quickly.

Anyway, this does not help the situation knowing I am physically suffering as well and that he will not wash down things after using them so it's become an extra thing I have to take care of for my daughter and I.

I have to remind myself that I did not invite this crazy into my life. He made decades of bad choices and now it's thrust upon me as well.

Sad to say I look forward to having to work tonight and going to my Bible study to get out of the house but I am so looking forward to some normal for a change even a couple of hours. Between the itching like crazy (like poison ivy all over) and his angry tones for normal stuff, it's going to be a long long haul ahead. This group is truly helping me keep on a more even keel than I would have been.


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: How to know real sickness/fake [Re: ConnieT] #196973
08-20-2018 11:52 AM
08-20-2018 11:52 AM
Joined: Jun 2013
Posts: 317
alabama
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KristenS Offline
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KristenS  Offline
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K

Joined: Jun 2013
Posts: 317
alabama
Well, I hadn't heard that one before, but after I went through all this, it wreaked havoc on my immune system. I'd always had some allergies, but they changed (or worsened) completely. When I was finally getting my diet back under control, I was trying to eat more salads to be healthier ... and started this trend while on a trip, just me and my son. And added more spinach. And guess who now turns out to be allergic to spinach, of all things? Yup. (We had my allergist confirm this as soon as we got back home, but two different salads, two different restaurants, two different nights was pretty convincing on its own. Thank goodness I travel with a ton of Benadryl. And my kid got a lesson in how to use 'antique' hotel telephones, LOL.) So it's definitely possible for treatment to cause allergy issues. Being so bad as to cause sensitivity in another person ... that's scary! Not exactly something they write in the fine print (which I remember reading pretty closely at the time). Are there medications or other precautions you can take to help you through this time? I'm glad you have hospice training ... that has got to be helpful in more ways than one. Maybe some of the other folks in your class will have tips on handling patients who shouldn't be touched? Might be ways you can help limit any chemical contamination?

If it helps you, the effects on you will hopefully wear off as soon as this is over. My kids, one of whom is extremely sensitive to chemicals and other allergies as well, cuddled me like crazy during our cancer season (within limits, due to the feeding tube being awkward), and they seemed to be okay. I know you can't compare one person's outcome with another's, but I hope it might help anyway. My son used to get the worst rashes from everything imaginable, even the mulch on the church playground ... thankfully he's past that, but still sensitive to stuff. I hope very much you find some physical as well as emotional relief!


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: How to know real sickness/fake [Re: ConnieT] #196974
08-20-2018 01:10 PM
08-20-2018 01:10 PM
Joined: Aug 2018
Posts: 222
C
ConnieT Online OP
Gold Member (200+ posts)
ConnieT  Online OP
Gold Member (200+ posts)
C

Joined: Aug 2018
Posts: 222
Thank you Kristen. The nurse is calling the pharmacy to ask what is in cisplantin. I spent 12 yrs sick from allergies (respiratory borne) and on antibiotics because of the allergies so I don't want to go there again. I should have taken a shower when we got home just to relieve the itching possibly. While it's not bad, it's slightly still affecting me a few hours later. I lived through this awful for many years so I'm not mistaken as to what's going on. Just need to find out specifically what is bothering me and wishing he had someone else to drive him to treatments. He could drive himself I'm sure as he's still driving to town to buy himself fast food once or twice a day!

I spent a few weeks getting off of zyrtec after taking it for 15 yrs. my body itched beyond measure those few weeks so I'm very hesitant to take any of those medications again.

I gave him his own fridge to try to reduce him touching stuff though I think it's probably something in his respiration that is really getting to me. Maybe i should wear a face mask to keep from breathing his air and see if the reaction stops. He had his first chemo treatment a week ago. He will have 2 more chemo treatments.

I am wondering where I can buy face masks in this small town????


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: How to know real sickness/fake [Re: ConnieT] #196975
08-20-2018 01:17 PM
08-20-2018 01:17 PM
Joined: Jun 2007
Posts: 10,303
PA
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ChristineB Offline

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PA
All pharmacies should have the face masks.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: How to know real sickness/fake [Re: ConnieT] #196976
08-20-2018 02:20 PM
08-20-2018 02:20 PM
Joined: Oct 2012
Posts: 1,083
Toronto, Canada
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gmcraft Online

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gmcraft  Online

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Or you can try amazon.com.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Re: How to know real sickness/fake [Re: ConnieT] #196980
08-20-2018 08:22 PM
08-20-2018 08:22 PM
Joined: Aug 2018
Posts: 222
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ConnieT Online OP
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ConnieT  Online OP
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Joined: Aug 2018
Posts: 222
I'm going to try a scarf tomorrow and see how I do. I took a benadryl as I could not stand the itchiness in my house either. I left for a few hours and had great relief. there's formaldehyde somewhere on/in my husband. I will find the source of it. I had 12 yrs of this reaction to chemicals and formaldehyde, I will not tolerate going there again!


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: How to know real sickness/fake [Re: ConnieT] #196994
08-22-2018 10:20 AM
08-22-2018 10:20 AM
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Posts: 222
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ConnieT Online OP
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ConnieT  Online OP
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I bought an air filter thing, wore the facial mask the past 2 days and as long as I don't get within 5 ft of him, I do pretty well. I took Benadryl 2 nights in a row but I feel drugged in the mornings so I'm not doing that unless I can't take it anymore.

Still trying to figure out what is bothering me from his breath. He has thrush now and is being treated for it and I keep asking for a list of medications so I can try to pin this down but no list after repeated asking. Will go find the meds and write them down myself later today.

I'm not alone in this struggle as we are dealing with this in real estate. One client almost needed an ambulance as she appeared to be having a heart attack from mold in a house. Another realtor and I are the ones who test houses for everyone else now. We know as soon as we step in a house, sometimes before I even step into the house, if it has mold. I hate being so sensitive but have been my whole life.



Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: How to know real sickness/fake [Re: ConnieT] #196999
08-22-2018 06:33 PM
08-22-2018 06:33 PM
Joined: Jun 2007
Posts: 10,303
PA
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ChristineB Offline

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ChristineB  Offline

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PA
When I was house hunting, I must have looked at 30+ houses with my limited house buying budget. I went in some pretty scary places and after the first couple scary, dark, moldy disgusting basements I started not even going down to look if I didnt really think the house was a good fit for me. I sure wouldnt want to be a realtor who had to go into those awful basements.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: How to know real sickness/fake [Re: ConnieT] #197002
08-22-2018 07:00 PM
08-22-2018 07:00 PM
Joined: Jun 2013
Posts: 317
alabama
K
KristenS Offline
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KristenS  Offline
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K

Joined: Jun 2013
Posts: 317
alabama
House hunting can be scary, for sure! Realtors are brave folks! Here's a funny for you, Connie, if you want ... when I was looking for my first place (my mother and I decided we'd both be happier if I moved out, LOL, before she got remarried ... I was just finishing up college, and wanted to lose money in a mortgage instead of rent), we looked at all the small houses in our area. We found the most adorable, gorgeous place downtown, convenient to everything, just above our price point, sold by the sweetest old couple. My mom had a rule that you should always peek in the attic, though she admitted she couldn't articulate WHY she had that rule ... it just seemed a good thought. So we peeked in the attic ... and every beam in that attic was charred through! Clearly they'd had a bad house fire at some point, and done some fantastic cosmetic work on everything but the attic ... which is why it looked so great. They pretended surprise, that they had no idea it was like that, or why. We decided to pass on that one ... no way to verify structural integrity ... but to this day, I wonder what on earth the story behind that burned attic was... and who ended up with it ...


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: How to know real sickness/fake [Re: ConnieT] #197003
08-22-2018 07:15 PM
08-22-2018 07:15 PM
Joined: Aug 2018
Posts: 222
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ConnieT Online OP
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ConnieT  Online OP
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Joined: Aug 2018
Posts: 222
oh my!! thank goodness most people hire an inspector these days to discover those treasures!! haha. Des Moines just had a flood recently and one of our realtors was selling a house there. basement flooded. homeowners swear it was bone dry....nevermind the squishing sound as the buyers walked on the carpet! The sellers weren't going to let the buyers out of the deal but we hired a lawyer to get them to back off. Mold is such an issue these days on top of meth. A meth house will always be dangerous and stigmatized but people don't mind lying if they want to sell. Buyer beware!

Thanks for sharing your story...the nightmares we realtors never want to encounter!


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: How to know real sickness/fake [Re: ConnieT] #197032
08-27-2018 05:05 AM
08-27-2018 05:05 AM
Joined: Aug 2018
Posts: 222
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ConnieT Online OP
Gold Member (200+ posts)
ConnieT  Online OP
Gold Member (200+ posts)
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Joined: Aug 2018
Posts: 222
I'm sure my husband would be glad to go back to where he thought things were horrible....I'm struggling to listen to his painful responses to his suffering. This got hard fast.


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
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