Author Topic: when others disappear in life after a tough medical diagnosis  (Read 19931 times)

mistasteve

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Re: when others disappear in life after a tough medical diagnosis
« Reply #15 on: September 15, 2019, 02:45:37 pm »
My experience with this was mixed. The big surprise was how poorly my mother-in-law (a former nurse of all things) handled it. She kind of trivialized it, kept saying it was nothing, everything would be fine. Then kind of willfully misunderstood or misheard things ('you'll get your hearing back! wonderful!') To top it all off, after we had helped her move out to be close to her daughter and granddaughter 2 years ago, and done a lot to include her and spend time with her and try to help her with her adjustment to her new home, she decided she needed to move back, and she did so literally the week before my surgery! Then she apparently tried to downplay it to family/friends out there because I'd get messages like 'that's great you got your hearing back' (I didn't - translab - no hearing at all in that ear now!)

It kind of sucked b/c previous to that I felt we had a decent relationship (we'd even do things together, just the 2 or us, sometimes) but she kind of nuked it (my wife calls it 'nuclear winter). She never even bothered to check in after I got out of the hospital.

Anyhow rather than stew on that (although it was kind of therapeutic to just write honestly about it just now, to an audience that will understand) I tried to focus on the good - some people I didn't even necessarily think of as close did really nice and thoughtful things! And my wife was the champion of champs, always there, super supportive, as was my family. I just feel bad things ended on such a bad note because like I said I never really had ill will toward my MiL and I hate for my wife to have a 'nuclear winter' scenario.

Anyhow - thanks for listening. This is a good group. I hope everybody can find some bright lights and maybe people that pleasantly surprise you when others let you down.

chrisabbott

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Re: when others disappear in life after a tough medical diagnosis
« Reply #16 on: September 18, 2019, 07:06:43 pm »
Interesting how some people react isn't it?  I'm glad your wife has been a rock for you, and understand how hard it is when, inspite of your best efforts, you can't maintain a good relationship with another member of the family. 

FWIW:  I have a friend that is very very close, who blew off the initial news (she is also in the medical field), saying when she saw the MRI screenshots she was glad to see it wasn't very big nor likely to be a problem.... several weeks after my surgery, she was asking me if I recalled how concerned she was when she realized that I had a BIG tumor and it was already pressing on places - not good, freaked out!  Hmmm, I just don't know why people aren't honest when they hear serious medical news, but I find it difficult to deal with.  We're still friends, I wouldn't quit caring about the friend that let my son throw up on her antique rug 20 years ago so I could have an anniversary evening out with my husband, but she lost some of my trust and respect - and like your MIL, had caused some inconvenience and upset for me post-op which just piles on the wondering why?

On the other hand, I had a friend that I only met a little over a year ago, show up at the hospital as I was checking in 6:30 am, and kept my husband company the whole 14 hours of surgery.  She cleared her calendar to be my driver the week after I was released, and if I got tired, would just look at me and say sweetly "Chris is sinking, I'm taking her home."  There must be a special place in heaven for such a special lady.

I've had some people be complete arses, yet I've had the best support from unexpected directions.  I'm relieved that my manager at work is one of the good ones, and blessed that my Son has been intuitively there for me.  I had similar experiences 35 years ago when I had surgery to reconstruct my hip as I had giant cell tumors - I guess these things bring out the best and worst in people.

Keep noticing the bright lights - they can really make your day!
Strange tastes, facial numbness symptoms led to MRI 3/2019: 2.4 x 3.2 x 2.6 cm VS on left side
Left hearing went 4/2019
Translab 06132019:  1.4 x 2.4 x 1.6 cm residual stuck to facial nerve & brain stem
MRI 12122019:  1.6 x 3.2 x 2.3 cm
Translab 01132020:  0.1 x 0.75 x 0.57 + 1.5 x 0.5 cm
GK next

Enri

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Re: when others disappear in life after a tough medical diagnosi
« Reply #17 on: September 18, 2019, 08:43:56 pm »
I guess I had not been very close to my siblings, but a couple of years before my diagnosis my younger sister kept on insisting that we get closer and that I come see her.  To the point that totally coincidentally, I saw the ENT that gave me bad news on a Tuesday and that Thursday I had planned to be at my sister house.  When I got there I told her the news and at that point I was in my read-anything I can find phase.  She used to work in the health field, she she seem to downplay the news.

I know her life is more complicated than mine with the demands from her family.  But I asked her, if I decide to have surgery would you come and check me in and out of the hospital.  I knew I needed more help than that but I could make other arrangements.  I was hurt when it took her 4 days to give me an answer and on the way to the airport she finally said yes as long as it did not conflict with her camping trip.

It made me feel alone and I sort went into a pity party for a while.  But then I urged myself to stop being silly. I lived alone most of my life and I know how to do it.  It is like any problem that requires solution.

It felt so much different when I told the news to a good friend of mine and before I even asked she said just tell me when do you want me and for how long.  She said I will come and nurse you to health.  Mind you I live in Texas and she in France.

So when in an entire year, my sister only asked once in a one-line Facebook message when is your surgery?   There was nothing else to do but rely on those that kept up with the news from my doctor visits and stayed interested.

So I made the arrangements.  The legal work so my friend could decide if needed,travel arrangements, etc.

My friend arrived the weekend before surgery so we had a chance to go over the in=n case of need details.  She was with me altogether 5 weeks.  She saw me through the surgery and the second hospital stay about a week post when I developed meningitis. 

I had given my friend a list of a handful of people to keep updated with my news.  One of those was my sister’s daughter that had asked me from time to time about how I was dealing with the AN.  My sister then started calling my friend wanting to know why she was not calling her and giving her info.  My friend was able to tell her that she had been given a list by me and she was only to contact and give info to those in the list.   It did not feel as an expression of concern but more like that of wanting to be the one in control. 

Those that came to my help are my true friends and support.  Not only my friend from France but another one that lives locally (but with an elderly mother at home) yet came to accompany my friend in the waiting room for most of the 7 hour surgery. 

My neighbors that even weeks after they would call me to see if I needed anything. 

Those are debts that cannot be repaid.  My eternal thanks to them.

I do not mean to whine but it does feel good to get the story out of my chest.

My message to those facing these issues is you are the one with the AN and you are entitled to be a bit selfish and seek support where support is given or offered and it may not always be where you would have expected it.



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Diagnosed Oct. 2015 - mild tinnitus, partial hearing loss - Right ear
1.5 cm x 0.8cm
Retrosigmoid Nov 2016 - Houston Methodist - Drs. Vrabec and Britz

Patti

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Re: when others disappear in life after a tough medical diagnosis
« Reply #18 on: September 20, 2019, 08:18:39 am »
Oh gosh this thread evokes so many memories! My surgery was back in 2000 and things did not go well. I was hospitalized/rehab for 6 weeks. No memory of the first two weeks. My husband and family were the best. My community fed my family for 2 months (I had young children) and drove my kids to all their events (ballet, soccer, etc.). I couldn't drive for 6 months and somehow my community arranged to have someone drive me to and from out patient rehab 45 minutes away for several months. All good there. But I had a couple of curve balls with friends. My neighbor and friend stayed away from me. I knew she cared, but didn't like seeing me like I was. I knew it scared her. I cared enough about our friendship to force myself on her. I invited myself over for a cup of coffee and she was able to see that i was the same person as always, just had some issues and a funny looking face. I broke the ice and she has been a dear friend ever since. Another close friend totally ignored any attempts of mine at communication or visits. I wrote to her a couple of years later. She had an excuse and apologized, but actions speak louder than words. She really is not a friend anymore. It hurts a lot. I feel teary in my eye (haha!) as i write this. So anyway, I have a lot to be thankful for, just wanted to share my experience.
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

lryan42

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Re: when others disappear in life after a tough medical diagnosis
« Reply #19 on: September 20, 2019, 11:21:08 am »
This is a good thread and I'm glad it got bounced up. 

It's been very interesting to me as well.  And it's honestly brought into stark clarity how I have treated others in the past.  I'm ashamed to say that I've been "that guy" who adopted the "I'm so sorry to hear that.  And I'm sure it'll be fine!" approach regarding a friend who was going through a rough medical diagnosis. 

I chalk a lot of the "minimization" to people's own fears of their mortality.  Sort of a "whistling past the graveyard" effect.  This stuff is a heavy lift, and it's life changing.  That's very scary to face, and there are a lot of feelings of powerlessness, hopelessness, and whatnot which come to mind.

Bottom line: this sort of thing leads to a lot of real-talk which I think many of use simply don't have the capacity to face.  And that's really sad, because this is a fundamental part of human existence.  That said, opening your heart and being present with this sort of thing is much, much easier said than done.

I'm glad I've found this forum.  And if you (and I mean any of you) are feeling hopeless or depressed and need somebody to talk with about your AN adventure, please hit me up and we'll connect.  I'd be glad to listen.


Liam
2017 - Mild vestibular symptoms; vestibular rehab; misdiagnosed.  Normal hearing.
2018 - MRI w/o contrast: ambiguous result.  Normal hearing.
2019 - MRI /w contrast: 5mm x 4mm x 3mm AN.  Moderate hearing loss.
2021 - AN unchanged but now completely SSD.
2022 - Cochlear implant here I come!

mistasteve

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Re: when others disappear in life after a tough medical diagnosis
« Reply #20 on: September 20, 2019, 07:45:38 pm »
Thanks everybody. I guess a recurring them is some people may let you down, but it's best to focus on the people that show up. Maybe somebody you thought was cool but weren't that close too. Maybe a family member you kind of drifted away from. When people let you down, it sucks, but give thanks to those who are there for you, and try to be there for them or others when the time comes.

gunns

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Re: when others disappear in life after a tough medical diagnosis
« Reply #21 on: May 06, 2020, 09:20:47 am »
When others treat you that way they’ve actually done you a favor. They’ve shown their true colors. They never were a good friend. Having been raised in a very abusive family I learned early on how to sever relationships. They’re helping you separate the chaff. I’d rather have one good friend than a bunch of “friends” that you can’t count on or treat you poorly. Those people don’t get it - you don’t need them but they NEED you. When I see people with difficulties emotional, physical or financial I know I could easily be in their shoes. I tell others, “Careful. That could very well be a picture into your future”.  I’m 3yrs post-op and struggling with the side effects and secondary issues that most of us experience. I don’t have the energy or time to deal with the Bevis & Buttheads in life. Just my 2 cents. God bless you all and hang in there!

 


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