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

Posted by giselleanne82 @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?!?

Liked by giselleanne82

Thank you. Stay strong everyone !!!! We got this!!!!!

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@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.

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@alpaca You had a wonderful suggestion…WRITE IT DOWN…..I used to keep a pain journal and need to start that up again….but what helped the most was a journal about how I felt….about everything and everyone. That helped tremendously! I don’t know why I stopped just like the pain journal I need to start again. I have taken one precaution and told my most trusted friend where it is and they should destroy it in case of my sudden death. The problem with being painfully honest is feelings get hurt and I would not want to pile anger or regret on top of the sorrow they are feeling. I will destroy it myself if I get the chance and have already destroyed parts of it..
The point is to get some relief from the feelings that have piled up in my heart and soul not to lash out at the people around me. once that is accomplished there is no need to have a written account hanging around. The only good that could come of it is to compare to life now. Have you made changes is your life better or worse? I found an old journal (3-4 yrs) and word for word it could have been written that day. I HAD DONE NOTHING to change my situation !!!! That spurred me on to make changes that’s for sure.
Having cancer has changed me. My goals changed. How my children treated me changed but most important I changed, for the better. I am more accepting, more patient, kinder and except when I implode I am calmer. I truly believe I am a better person.
I have always been a Christian but my relationship with God became much more personal. Everyday has some sort of discussion with God and to be honest they are not all filled with praise. Funny how some things just fall in to place. After my rant on this site the other day Guess what my Bible study subject was on Tues.? “DOES GOD KNOW MY PAIN ?” It was like it was chosen just for me, like I said funny how things will happen that way. Just like finding the flood of responses on this site after I had shared my very dark day. I couldn’t type an immediate reply because I was crying from gratitude and my brain couldn’t function.
I had almost given up on this site I felt like I didn’t fit in…. I was wrong….. I just hope I can bring support to someone that needs it, like so many of you did for me.

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@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.

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@alpaca Your phrase, “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,” represents a lot of us, but you said it so well! I love word-pictures and that is a good one. Thanks for sharing it with us. Teresa

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@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.

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Hi Allison, I think people just don’t know what to say so they repeat what they think you want to hear. Maybe try and learn something. Learning something new always lifts my spirit. Frank

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@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

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Hi, I just turned 54 in January. In July of 2013, I had a bilateral mastectomy. I felt a lump on my nipple and went in for that. The doctors also found another small cancer in the same breast. I decided to have both breasts removed and the gel packs placed so I at least had bumps. The lymph nodes showed no cancer, so I did not have chemo or radiation. I thought I was the luckiest woman and that I would never have to worry about cancer again. None of the doctors told me that it could metastasize into my back and to watch for back pain. I had a checkup after a year and the doctor just looked at my breasts and said I was good to go. She told me I should have a MRI in five years. Little did I know that the cancer was going rampant in my back. In February of this year, I went to the doctor with severe back pain. After 4 MRIs, a PET scan, sacral bone biopsy, etc….my back is full of cancer. I think every woman should have a MRI one year after any type of breast cancer. I definitely would have had that done if I had any idea that this could happen. Maybe I am blaming the healthcare profession, and I should have been the one to dig deeper into the whole metastases thing, but since they said I was cancer free and didn’t need chemo or radiation, I just went on with life, very unhappily though. I decided to divorce my ***** husband after 31 years of a worthless marriage and that whole thing has been SOOOO stressful. I almost feel like the stress may have caused my cancer recurrence. What do you think?
Deb

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It seems like a horrible nightmare to me. I just found out in March of this year that my back is full of cancer now. I keep thinking, I am only 54 and after finally divorcing my ******* husband, I found a man who genuinely cares about me and treats me like a queen. How can this be? What did I do to deserve this? But I know many of you are thinking the same thing. I have a 28-year-old son and a 26-year-old daughter. My daughter has a 6-year-old beautiful little girl. They all mean the world to me and I keep thinking that I hope they will be able to cope with life when I am not here to help them. I know they will, but I also know how nice it is to be able to call my mother and ask her opinion or her advice, or what went in that recipe. I just have to remember that I will be right beside them, even if they don’t realize it. I am hoping I have a few years left to be with them. Deb

REPLY
@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.

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I am sorry it has taken me so long to get back to anyone but fell into that depressive “Fine I didn’t need to talk to anyone anyways” spot…BUT..as I read @alpacas’ generous reply it was to identical to ignore. Now even my Dr. is saying “to many scans” “to much radiation” I am feeling there is no winning when it has anything to do with cancer.
I mentioned how at my Jan apt it was found in 4 new areas and expected that at the Feb. check-up I would be choosing treatment or not.INSTEAD I was granted another miracle. I was asked if I had seen my “chemo oncologist” and gone ahead with chemo…which I of course had NOT done…..my tumors have shrunk…still there but smaller….DR. has no explanation…..I can only think it is the most obvious answer….POWER OF PRAYER. Everyone is so astounded, but why do we pray if we do not think they can come true?
grand son wants lunch so I have to take a break but I will be back. I have a lot to share. I appreciate the sharing and caring SO MUCH !

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Can’t remember if I discussed this or not but after going in for scans every 3 months for a couple years now my new oncologist wants me to wait 6 months.. he is very concerned about the radiation levels I have been exposed to ( in my head I wonder if that really matters) kicker is I was told it was back …metastasized to 4 areas but looked stable. I told him I didn’t know if I could wait that long…. the mental aspect of waiting may be more than I can take especially since he wants to only do a MRI… NO PET/CT… not sure how they do a comparison to all previous PETs to just a MRI ????? Would welcome any informed info !!!!
The last time they switched me from 3 months to 6 month scans I had my recurrence. I had mentioned I had terrible back pain and was informed scans looked good AND PAIN WOULDN’T BE FROM CANCER ANYWAY (?????). So I had an MRI to see if I had an injury causing the pain and the result was no injury but what appeared to be a recurrence of cancer which had metastasized to my back…this was 10 days after getting an all clear from my oncologist. A biopsy was done and it was malignant went on to have chemo as a palliative treatment. Just mentioning this as a background to establish why I am so nervous about being backed off to 6 months.
P.S. my back is just killing me again (lets hope not literally 🙂 but they say would not be from tumor ??? I guess I just don’t get why not? at least it hasn’t been explained to me why their opinion is such….that cancer doesn’t cause pain???? really????since when???especially involving my spine????
I waffle between wanting/needing more information and being on info overload, can’t keep all the contradicting information/opinions straight.

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People out there,
I am still alive and celebrated another birthday. Even the doctors are astonished that I am still alive, not just me. I still laugh and cry a lot. I laugh mostly at those who tell kindly me that they can get hit by a car at any moment and die before me. Mostly I try to look kind, sometimes I smile and say “yes, that is so so true but I could die the same way or wait and die because of my cancer”! Sometimes I am really bad and say “oh what a pity, I thought that we would have time for some coffee but now you are going to get hit by a car..”.
I am receiving two different kind of treatments and it seems that I would live another year! But dearest @allisonsnow, insist on every 3 or Max 4 months. Please talk to your Oncologist and share your concerns. As I wrote you before, as I live in Sweden, don’t meet the same problems as you but I have my Scans and MRI every 4 months and sometimes depending on how my health condition seems, my oncolog may order them after 3 months. Persuade your doctor because it is not that we are going to live another 20 years and worry about side effects of too much radiation. I have had my 4 different periods of radiation so a little more doesn’t change that much. Good luck dear Allison and even you have every right to worry, please enjoy every second of your life. This is the only life we have, so enjoy❤️

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@djankord1

It seems like a horrible nightmare to me. I just found out in March of this year that my back is full of cancer now. I keep thinking, I am only 54 and after finally divorcing my ******* husband, I found a man who genuinely cares about me and treats me like a queen. How can this be? What did I do to deserve this? But I know many of you are thinking the same thing. I have a 28-year-old son and a 26-year-old daughter. My daughter has a 6-year-old beautiful little girl. They all mean the world to me and I keep thinking that I hope they will be able to cope with life when I am not here to help them. I know they will, but I also know how nice it is to be able to call my mother and ask her opinion or her advice, or what went in that recipe. I just have to remember that I will be right beside them, even if they don’t realize it. I am hoping I have a few years left to be with them. Deb

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@djankord1, I want to extend a sincere welcome to you on Connect. I am sorry to hear of your current nightmare situation. It is an unfortunate reality that age does not matter when it comes to the crisis situations in our lives. And neither does our current personal life situation.
We have other members who are managing to live and to cope with similar situations. I am certain that you will find some of the support that you are seeking through conversing with them. We are here to support you and to answer any questions that you have. I know that there are some discussions in out Cancer Group that might appeal to you, also.
In the meantime, try to focus your positive energy on your blessings: your loving husband, children, granddaughter, and mom’s wisdom. And enjoy every minute of your time with them. Worry will not resolve anything. When I was critically, a friend sent me a refrigerator magnet. It read, “Worry Bad / Prayer Good”.
Sending prayer and a hug,
Rosemary

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@saltis, Happy Birthday to You!!!!! Thank you letting us celebrate with you:-)
You are very kind to offer your advice and your encouragement to all of us. Your message sends the clear message that we all need to advocate for our own health, no matter where we live. It does sound like you are on a remarkable journey.
I’m sending my prayers and a hug across the Atlantic to you.
Rosemary

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@rosemarya

@saltis, Happy Birthday to You!!!!! Thank you letting us celebrate with you:-)
You are very kind to offer your advice and your encouragement to all of us. Your message sends the clear message that we all need to advocate for our own health, no matter where we live. It does sound like you are on a remarkable journey.
I’m sending my prayers and a hug across the Atlantic to you.
Rosemary

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@rosemarya, thank you. I think and feel that everybody is on it’s own remarkable journey. Everytime that something bad happened to me, personally I never lost a minute on “why this happens to me?” I would rather that it happens to me rather to my child or someone dear to me or younger or someone whom I don’t even know but has enough problems, like war, other atrocities, you know. I am not a very strong person but this is my life and I am forced to make the best of it. It is easy to lay down and let self pity take over but then I would lose such precious moments which I can make my life worth fighting for. Meeting loved ones and really enjoying their company. Work as a volonteer and help those less fortunate.
I feel sometime that cancer has made me egocentered but when I work with those less fortunate I feel alive and appreciate my own life. I am able to appreciate my life because I have been able to see my child grew to become a man and a wonderful father to a beautiful girl. My husband still loves me, with hair, without hair, with breasts and without breasts, with my chemo brain and more changes. So please be happy for the life you have, because believe me, we are lucky❤️

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@saltis Thanks for those inspiring words! Teresa

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@saltis

People out there,
I am still alive and celebrated another birthday. Even the doctors are astonished that I am still alive, not just me. I still laugh and cry a lot. I laugh mostly at those who tell kindly me that they can get hit by a car at any moment and die before me. Mostly I try to look kind, sometimes I smile and say “yes, that is so so true but I could die the same way or wait and die because of my cancer”! Sometimes I am really bad and say “oh what a pity, I thought that we would have time for some coffee but now you are going to get hit by a car..”.
I am receiving two different kind of treatments and it seems that I would live another year! But dearest @allisonsnow, insist on every 3 or Max 4 months. Please talk to your Oncologist and share your concerns. As I wrote you before, as I live in Sweden, don’t meet the same problems as you but I have my Scans and MRI every 4 months and sometimes depending on how my health condition seems, my oncolog may order them after 3 months. Persuade your doctor because it is not that we are going to live another 20 years and worry about side effects of too much radiation. I have had my 4 different periods of radiation so a little more doesn’t change that much. Good luck dear Allison and even you have every right to worry, please enjoy every second of your life. This is the only life we have, so enjoy❤️

Jump to this post

@saltis Happy birthday! Your sense of humor is just great, keep it up. Teresa

REPLY
@allisonsnow

Can’t remember if I discussed this or not but after going in for scans every 3 months for a couple years now my new oncologist wants me to wait 6 months.. he is very concerned about the radiation levels I have been exposed to ( in my head I wonder if that really matters) kicker is I was told it was back …metastasized to 4 areas but looked stable. I told him I didn’t know if I could wait that long…. the mental aspect of waiting may be more than I can take especially since he wants to only do a MRI… NO PET/CT… not sure how they do a comparison to all previous PETs to just a MRI ????? Would welcome any informed info !!!!
The last time they switched me from 3 months to 6 month scans I had my recurrence. I had mentioned I had terrible back pain and was informed scans looked good AND PAIN WOULDN’T BE FROM CANCER ANYWAY (?????). So I had an MRI to see if I had an injury causing the pain and the result was no injury but what appeared to be a recurrence of cancer which had metastasized to my back…this was 10 days after getting an all clear from my oncologist. A biopsy was done and it was malignant went on to have chemo as a palliative treatment. Just mentioning this as a background to establish why I am so nervous about being backed off to 6 months.
P.S. my back is just killing me again (lets hope not literally 🙂 but they say would not be from tumor ??? I guess I just don’t get why not? at least it hasn’t been explained to me why their opinion is such….that cancer doesn’t cause pain???? really????since when???especially involving my spine????
I waffle between wanting/needing more information and being on info overload, can’t keep all the contradicting information/opinions straight.

Jump to this post

@allisonsnow I can understand your concern and the information overload. It is difficult when you see different doctors and they have different opinions. Knowledge is important to those of us who are dealing with cancer. I hope that you are able to navigate the information highway and get some reassurance. Wishing you well, Teresa

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