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giselleanne82
@giselleanne82

Posts: 1
Joined: Sep 04, 2016

Scary,strange,possibly"near death"symptoms:begging for some insight

Posted by @giselleanne82, Sep 4, 2016

I woke to my husband making a rattling sound-struggling for air. His lips turning purple,stiff body-clenching his fists up by his head. Completely unconscious. I did CPR and he came to after 3-5minutes- having no recollection. He has asthma so I googled- it just seems his symptoms were much more severe- almost like he could have died if I hadn’t heard him when I did. What does it sound like he may have or had? What was that?!?

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@giselleanne82 I am curious to know what was the ER’s diagnosis was??

Worried
Dawn

Hi @giselleanne82. We haven’t heard from you since the very scary night you had with your husband earlier this month. How is he doing? What explanations did your doctor give for the episode and what are you doing now to help prevent it from happening again?

I’m curious to know where you and your husband live? I moved from MI to FL 2 years ago. I’m 46. NO support in SW FL but LOVE tropical weather. But health care HORRIBLE here. Is it Fort Meyers, FL or Florida all together. Being disabled/experienced RN from MI I KNOW the difference if good/bad care.
What happened with your husband? I have multiple issues right now. Was brain in 2003 then gastrointestinal now have Lupus and end liver disease from becoming an alcoholic during sad divorce 10 years ago. How has your husband’s care been with Mayo? Did they coordinate his care well? Come to a diagnoses and treat him well? Thank you. Kelly

Since this group was “Just want to talk” I need to just talk to some one. All my friends are at work and I don’t want to worry them. Most do not know about the return of my cancer anyway so hard to explain to them why I am so anxious and nervous. Next week go back to Dr. another PET/CT to see how they are acting. If there has been a lot of growth in the last 8 weeks we go to the next step. It is so hard just waiting it is driving me CRAZY this time, my husband doesn’t understand at all ! I get so irritated with him he will say things like “why don’t I just do……” whatever it is this time or why don’t I have ….done ?
I could scream !!!!!!! I am so tired of “being so strong” “looking so good” (translation= she must not really be that sick) But it is what is expected of me so I just do it. I feel I can’t let people down they depend on me, even people I don’t know hold me up as some shining example of how to handle it…….how do I let them know I am just falling apart inside? I don’t thats’ how.
I am not really looking for any advice I just needed to let it out somehow. I just need next week to be here knowing …one way or the other….is always better.

@allisonsnow

Since this group was “Just want to talk” I need to just talk to some one. All my friends are at work and I don’t want to worry them. Most do not know about the return of my cancer anyway so hard to explain to them why I am so anxious and nervous. Next week go back to Dr. another PET/CT to see how they are acting. If there has been a lot of growth in the last 8 weeks we go to the next step. It is so hard just waiting it is driving me CRAZY this time, my husband doesn’t understand at all ! I get so irritated with him he will say things like “why don’t I just do……” whatever it is this time or why don’t I have ….done ?
I could scream !!!!!!! I am so tired of “being so strong” “looking so good” (translation= she must not really be that sick) But it is what is expected of me so I just do it. I feel I can’t let people down they depend on me, even people I don’t know hold me up as some shining example of how to handle it…….how do I let them know I am just falling apart inside? I don’t thats’ how.
I am not really looking for any advice I just needed to let it out somehow. I just need next week to be here knowing …one way or the other….is always better.

Jump to this post

Hi Allison,
I’m calling in the “just need to be heard” brigade. @merilee @rosemarya @hopeful33250 @jimde @wandering @saltis @rae3 and @alpaca, please read @allisonsnow‘s message. Let’s pull up a chair and be active listeners. She just wants to talk to people who have been there and who get it.

She’s dealing with a mess of scanxiety, tired of “being strong” and “but you look great” stuff.

We’re listening Allison. Let that steam out!

Hi Allison & all others out there,
I know exactly how you feel. When my husband talks to others about our cancer and that this new chemo is not doing well for us, it cracks me up. We are not having another child, my cancer has become stage 4 and spread to chest and other parts. I am the one caughing, dealing with my death and leaving my life & you & my children and the rest of my family and friends. I am the one who is not going on holiday with our children or grandchildren. So please stop saying we…. Then there are those who doubt that you are suffering from cancer because you look fresh, laugh and make jokes. They turn to you and ask if you are sure? Sure about having cancer? You explain and suddenly they start telling you stories about some person who survived after using some strange herb which grows beside a river in Spain or maybe it was in Swaziland!
What I mean dear Allison, scream, stump your foot, tell hush to people who doesn’t respect your situation or just do as I do, go for a walk instead of standing there, feeling inadequate, tired or defenseless. It helps to calm your nerves, nature has a way to offer you serenity and helps you to breath. It may even make the person who make stupid comments, to think about what was said & make him/her realize it is time to behave. Unfortunately you are alone with your cancer but you are loved by so many. Send you a lot of positive energy.

@allisonsnow

Since this group was “Just want to talk” I need to just talk to some one. All my friends are at work and I don’t want to worry them. Most do not know about the return of my cancer anyway so hard to explain to them why I am so anxious and nervous. Next week go back to Dr. another PET/CT to see how they are acting. If there has been a lot of growth in the last 8 weeks we go to the next step. It is so hard just waiting it is driving me CRAZY this time, my husband doesn’t understand at all ! I get so irritated with him he will say things like “why don’t I just do……” whatever it is this time or why don’t I have ….done ?
I could scream !!!!!!! I am so tired of “being so strong” “looking so good” (translation= she must not really be that sick) But it is what is expected of me so I just do it. I feel I can’t let people down they depend on me, even people I don’t know hold me up as some shining example of how to handle it…….how do I let them know I am just falling apart inside? I don’t thats’ how.
I am not really looking for any advice I just needed to let it out somehow. I just need next week to be here knowing …one way or the other….is always better.

Jump to this post

@allisonsnow, I am here. And I am all ears. I offer you a virtual shoulder and a big hug and I hope that you can feel some extra love from Kentucky. You don’t have to be strong or anything like that in front of me.
I remember, for me, how the time seemed to almost come to a halt while waiting for a serious procedure with results. And while I wanted it to hurry up, too. That was awful. I waited for a cancer diagnosis, then I waited for an organ transplant. I know how hard it is to wait.
How are you feeling? are you eating and sleeping reasonable well? Will you have to travel to your doctor appointment, or is it nearby?
I’m going to go to dinner with my husband in a little while. But I will be checking in when we get home.
What would you ask me or say if I was right there with you?
Rosemary

@allisonsnow

Since this group was “Just want to talk” I need to just talk to some one. All my friends are at work and I don’t want to worry them. Most do not know about the return of my cancer anyway so hard to explain to them why I am so anxious and nervous. Next week go back to Dr. another PET/CT to see how they are acting. If there has been a lot of growth in the last 8 weeks we go to the next step. It is so hard just waiting it is driving me CRAZY this time, my husband doesn’t understand at all ! I get so irritated with him he will say things like “why don’t I just do……” whatever it is this time or why don’t I have ….done ?
I could scream !!!!!!! I am so tired of “being so strong” “looking so good” (translation= she must not really be that sick) But it is what is expected of me so I just do it. I feel I can’t let people down they depend on me, even people I don’t know hold me up as some shining example of how to handle it…….how do I let them know I am just falling apart inside? I don’t thats’ how.
I am not really looking for any advice I just needed to let it out somehow. I just need next week to be here knowing …one way or the other….is always better.

Jump to this post

Hello Alison. You articulate just how I have felt at many times in the cancer process. I feel I’ve used up all my family’s and friends’ support. It’s not as easy as saying “Get a support team around you” – not if you have been sick on and off quite often and still look good and function well. Husbands and other partners often don’t understand. I think only those who have travelled on the cancer or chronic illness rollercoaster really get it. I don’t know what your condition is, but I am a four time cancer survivor with varying degrees of panic surrounding each case. I’ve painted myself into a stoic corner where I seem so tough, no-one even asks me when my check-ups are any more. My best bet for understanding and support come from my new friends in the head and neck cancer support group here. I don’t want to worry my adult kids about it any more. I go to all my appointments by myself now and won’t call for company until I have to! That is actually quite a bad attitude on my part and there’s a wee bit of self-pity attached, but it’s working for me right now.
So, yes, I do understand. Your beautiful venting hits the nail on the head perfectly. I get it and so will hundreds of others. No one can be staunch all the time. Telling someone – writing it down – all good. BEST WISHES!

Hello all…I have another scan next week…I always worry..About nodes they are watching..I was DX Stage 2A in 2015. Positive in a few nodes.. had a.Local reoccurance.several months later. In mid chest..Radiation and chemo..Dr said was probably there before but to small…Anyway. I have family support sometimes ..But at times seems I am supporting family with there issues..
Younger brother with severe panic over the past 20 yrs.. and now possibly dementia…And a sister with fibro etc..Constant pain…And meds..So yes sometimes I find more support in these sites or the few friends I have…Sad isn’t it..

@kelly2000

I’m curious to know where you and your husband live? I moved from MI to FL 2 years ago. I’m 46. NO support in SW FL but LOVE tropical weather. But health care HORRIBLE here. Is it Fort Meyers, FL or Florida all together. Being disabled/experienced RN from MI I KNOW the difference if good/bad care.
What happened with your husband? I have multiple issues right now. Was brain in 2003 then gastrointestinal now have Lupus and end liver disease from becoming an alcoholic during sad divorce 10 years ago. How has your husband’s care been with Mayo? Did they coordinate his care well? Come to a diagnoses and treat him well? Thank you. Kelly

Jump to this post

Just found your post. I retired to Fort Myers, Florida too. I’m being treated by doctors at Florida Cancer Specialists in Cape Coral. My diagnosis is recurring BC metastisis to the bone. I have been receiving hormone treatments for 2 years. Wonder if you go to the Cancer Center on Colonial near Rt. 75???? They have a support group that meets monthly. I also go to meetings with a support group at Seven Lakes on Cleveland Ave. in Fort Myers. I went to Moffet in Tampa for a second opinion and they concurred with my treatment. Doesn’t sound like you have any cancer or am I misunderstanding your post. You certainly have enough issues. How are you doing now…your post was from October!!!

@allisonsnow

Since this group was “Just want to talk” I need to just talk to some one. All my friends are at work and I don’t want to worry them. Most do not know about the return of my cancer anyway so hard to explain to them why I am so anxious and nervous. Next week go back to Dr. another PET/CT to see how they are acting. If there has been a lot of growth in the last 8 weeks we go to the next step. It is so hard just waiting it is driving me CRAZY this time, my husband doesn’t understand at all ! I get so irritated with him he will say things like “why don’t I just do……” whatever it is this time or why don’t I have ….done ?
I could scream !!!!!!! I am so tired of “being so strong” “looking so good” (translation= she must not really be that sick) But it is what is expected of me so I just do it. I feel I can’t let people down they depend on me, even people I don’t know hold me up as some shining example of how to handle it…….how do I let them know I am just falling apart inside? I don’t thats’ how.
I am not really looking for any advice I just needed to let it out somehow. I just need next week to be here knowing …one way or the other….is always better.

Jump to this post

@allisonsnow We all feel for you, Allison. I think I mentioned that my church has a support group for people dealing with chronic illnesses. One topic of conversation that comes up on a regular basis is the “you look so good” comments that we get from people. We all feel that struggle of others not believing that our medical condition is what we know it to be. This is a difficult place to be. Another thing we discuss in our group is setting boundaries for ourselves and not doing everything that everyone wants us to do. It’s more important to set strong boundaries than to be told you are “being so strong.” The boundaries keep us from becoming overly tired and prone to stress reactions. So, take a deep breath, write down some boundary sentences that you can use the next time that you are asked to do something that you know would not be good for you and then determine to not feel guilty. Sound like a plan? Hope so. We are pulling for you! Teresa

@merilee

Hello all…I have another scan next week…I always worry..About nodes they are watching..I was DX Stage 2A in 2015. Positive in a few nodes.. had a.Local reoccurance.several months later. In mid chest..Radiation and chemo..Dr said was probably there before but to small…Anyway. I have family support sometimes ..But at times seems I am supporting family with there issues..
Younger brother with severe panic over the past 20 yrs.. and now possibly dementia…And a sister with fibro etc..Constant pain…And meds..So yes sometimes I find more support in these sites or the few friends I have…Sad isn’t it..

Jump to this post

@merilee, I am happy that you are here with us. I agree that we can find more support from others who share similar experiences.
I am thankful for Mayo Connect and the opportunity it provides for us to be together.
I hope that you get positive news next week.
Rosemary

@saltis

Hi Allison & all others out there,
I know exactly how you feel. When my husband talks to others about our cancer and that this new chemo is not doing well for us, it cracks me up. We are not having another child, my cancer has become stage 4 and spread to chest and other parts. I am the one caughing, dealing with my death and leaving my life & you & my children and the rest of my family and friends. I am the one who is not going on holiday with our children or grandchildren. So please stop saying we…. Then there are those who doubt that you are suffering from cancer because you look fresh, laugh and make jokes. They turn to you and ask if you are sure? Sure about having cancer? You explain and suddenly they start telling you stories about some person who survived after using some strange herb which grows beside a river in Spain or maybe it was in Swaziland!
What I mean dear Allison, scream, stump your foot, tell hush to people who doesn’t respect your situation or just do as I do, go for a walk instead of standing there, feeling inadequate, tired or defenseless. It helps to calm your nerves, nature has a way to offer you serenity and helps you to breath. It may even make the person who make stupid comments, to think about what was said & make him/her realize it is time to behave. Unfortunately you are alone with your cancer but you are loved by so many. Send you a lot of positive energy.

Jump to this post

I appreciate the thoughts of so many! and you have hit it right on the head as far as husbands go !! LOL I love your sense of humor:)
and I should be a millionaire if I had taken every cure for cancer I have been told about to the bank. That and the one how the govt. has already cured cancer (assuming it is just ONE disease )they just want us to keep paying for treatment.
People mean well I know and I appreciate all the help they do offer ( or did the first time around).
I agree 100% that nature does help calm the soul I try to be outside as much as I can but do have some limits, just one more frustration, but I still enjoy looking at the sun rise over the lake or set looking west across the fields. I take what I can get.
Seriously , when I sat down and saw all the responses I cried. I am so touched and hearing about others struggles they brought up and just thinking …yeah… they get it.

@allisonsnow

Since this group was “Just want to talk” I need to just talk to some one. All my friends are at work and I don’t want to worry them. Most do not know about the return of my cancer anyway so hard to explain to them why I am so anxious and nervous. Next week go back to Dr. another PET/CT to see how they are acting. If there has been a lot of growth in the last 8 weeks we go to the next step. It is so hard just waiting it is driving me CRAZY this time, my husband doesn’t understand at all ! I get so irritated with him he will say things like “why don’t I just do……” whatever it is this time or why don’t I have ….done ?
I could scream !!!!!!! I am so tired of “being so strong” “looking so good” (translation= she must not really be that sick) But it is what is expected of me so I just do it. I feel I can’t let people down they depend on me, even people I don’t know hold me up as some shining example of how to handle it…….how do I let them know I am just falling apart inside? I don’t thats’ how.
I am not really looking for any advice I just needed to let it out somehow. I just need next week to be here knowing …one way or the other….is always better.

Jump to this post

I totally relate ! No one asks about my scans anymore either ,this will be my third occurrence and everyone says how good or healthy I look. Next week we will see if it is as aggressive as last time and I need to quickly make some decisions or it is just hanging back. so far my symptoms are not much worse so no sense starting chemo (if I even do chemo) before I have to. I only told a few close friends about the recurrence and not one of them has called to see how I am or asked about when the scans are it seems cancer and I are old news.
Even though according to Dr.’s I should have died the first…and second…time. We haven’t said anything to my son yet no need to worry more than necessary. I do think that as long as we look good those around us put their heads in the sand.
Thank You to everyone for there support !!!!

@allisonsnow

Since this group was “Just want to talk” I need to just talk to some one. All my friends are at work and I don’t want to worry them. Most do not know about the return of my cancer anyway so hard to explain to them why I am so anxious and nervous. Next week go back to Dr. another PET/CT to see how they are acting. If there has been a lot of growth in the last 8 weeks we go to the next step. It is so hard just waiting it is driving me CRAZY this time, my husband doesn’t understand at all ! I get so irritated with him he will say things like “why don’t I just do……” whatever it is this time or why don’t I have ….done ?
I could scream !!!!!!! I am so tired of “being so strong” “looking so good” (translation= she must not really be that sick) But it is what is expected of me so I just do it. I feel I can’t let people down they depend on me, even people I don’t know hold me up as some shining example of how to handle it…….how do I let them know I am just falling apart inside? I don’t thats’ how.
I am not really looking for any advice I just needed to let it out somehow. I just need next week to be here knowing …one way or the other….is always better.

Jump to this post

@rosemarya my husband tries to make sure I eat some, I feel as though I don’t sleep at all. They Rx’d me with sleep apnea on top of everything else but don’t I have to fall asleep to have that? hahahah I am only sleeping 2-4 hours a night until my body and mind can’t stand it and I sleep a whole night thru.
It is a 2 1/2/ hour drive one way which my husband insists on doing in a single day ! Makes for a long day.
I would like a big hug and have someone say they will take care of it…no matter what “it” was. That would make for a good day.
Thanks for your note I hope you had a nice dinner out.

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