allipeas
Junior Member
Posts: 50 
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Post by allipeas on Jun 21, 2025 16:49:25 GMT
I would really like to have a discussion with those of you that have survived a serious health crisis, mental or physical. How did it physically and/or mentally change you.
Many of you know that about 3 years our suddenly found out a had a huge benign brain tumor. While it was benign, the place was not and I had to have surgery within a two weeks as it had become life threatening. The surgeon was only able to redact 40% because it was too vascular. After the 3 month mark, I began radiation to help freeze the growth. Please don't get me wrong, I KNOW that I am so very lucky to be here to tell the tale. Most days, I DO know that.
BUT, there are days that aren't so easy. Most of the lingering problems are what people can't see. I tend to walk like a drunk sailor half the time because my balance was affected (tumor is attached to my cerebellum), I am on a bit of a delay when it comes to speaking and my memory is complete crap. I don't spell and write as well as I used to (again this is something that only I can tell). You have no idea how long it took me to write this and thank GOD for spell check! It seems each year, right before summer, I nose dive with some kind of issue. Last summer, I suffered paralysis in my feet (drop foot) that had me using braces and doing extensive PT. In spring, I suddenly started having epileptic focal seizures and I haven't been able to drive the last four months.
I don't want or need a pity party. I am just trying to understand what the "after" was like for those of you that have gone through surgery and/or cancer treatments and/or radiation. All the "you look great/fine" when inside you aren't.
So looking for a chat about what some of you went through to maybe help me understand my own.
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Post by pantsonfire on Jun 21, 2025 17:37:19 GMT
I just wanted to pop in and say I understand and dealt with and still dealing with the after affects of the DUI accident.
I am just not in a good place to speak about it right now or share my feelings. But when I am in a better space mentally I will.
Just didn't want to not post for you
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scrapngranny
Pearl Clutcher
Only slightly senile
Posts: 4,948
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Post by scrapngranny on Jun 21, 2025 17:59:18 GMT
Several years ago I had an Abdominal Aortic Aneurysm that was found by accident when I was in the hospital with sepsis from a kidney infection. The aneurysm has no symptoms, and are fatal if they rupture. I was already pretty weak and mentally drained from that, when my doctor said he would like to do a CT scan before he released me from hospital. The scan showed my kidney was clear, but I had this large aneurysm. I was stunned and really had hard time processing.
We live in a small town, the local vascular surgeon was called in, and after looking the scans said it was over his pay grade to attempt to repair the aneurysm. They sent me by ambulance to a university hospital about a hundred miles away. I got there early evening and placed in a step-down ICU. Since I wasn’t having any symptoms from the aneurysm, I felt pretty foolish. Early Thursday morning the team started all the testing and more scans. By Friday afternoon they had come up with a surgical plan for the repair. They would do it Monday morning. I laid there over the weekend trying to grasp what was happening to me.
They cut me from the breast bone to the pubic bone in an 8 hour surgery. They had removed my intestines to reach the aneurysm, did the repair and put my intestines back in place and sewed me up. After the intestines were distributed they shutdown for a period of time to recover from the shock. I could have nothing by mouth until they began to work again. That was 7 long days. To say my head was totally messed up would be an understatement. The recovery was grueling.
After I got home, I would sit there just trying to grasp what had happened to me. For a couple of years it was kind of always in the back of my mind. Slowly, it faded away and I don’t think of it very often at all anymore. I have a horrible scar, but even that I hard notice anymore.
Since my surgery they have developed a new way to do those repairs, by going through the groin laparoscopically making a much less traumatic surgery.
I do still think every once in awhile how lucky I am the pieces fell together the way the did. Give yourself time and your trauma will fade. The more you talk about it and repeat the story the less raw it will feel. I’m glad you were given a happy ending.
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Post by nightnurse on Jun 21, 2025 18:01:20 GMT
I have not personally experienced this but have been part of the rehab care team for many many patients. I personally find the expectation that people who have suffered a debilitating health event need to be grateful it wasn’t worse so toxic. People should be allowed to be angry and sad and resentful and whatever other feelings they feel. In a way, your life is now before the tumor and after the tumor. It’s never going to be the same. And you’ll get used to the after but it’s sort of like addiction recovery in that you’re never “done.” It’s a lifelong process, it will wax and wane. And no one on the outside will really understand. You mentioned how it’s harder to read and write but only you notice. I imagine it must be frustrating to have to put extra effort into things that used to be simple and no one even notices how much harder it is. It must be so exhausting. I hope you have good support and people around you who acknowledge how hard it must be and how great you’re doing. I don’t know if a support group with people who have shared your experience would be helpful.
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Post by Bridget in MD on Jun 21, 2025 18:05:34 GMT
I have not been in this situation but my heart aches for you and I do root for the small victories and really try appreciate what we all take for granted.
Do you all remember Lisa Russo from 2peas? Her DH would participate in Iron man races and had (I think) a heart attack and was revived but his brian was without oxygen for a while so he has been in recovery, I think it’s been 2 years ago while competing. I am friends with her in FB and she posted today an update on his progress which has been so amazing but also so heartbreaking to read.
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Post by Basket1lady on Jun 21, 2025 20:15:58 GMT
I’m so glad to see you! I’ve often wondered how you were doing. Hugs to you.  I’d say that what you are going through is completely normal. Or at least it’s what I’ve experienced. I had a similar issue, but mine is a mass from an infection deep in my sinuses. It caused horrible vertigo with my vision and hearing affected. It took 5 months for them to find the infection and another 18 months of OT and PT rehab. Even my thick curly hair changed to be fine and wavy. I still have issues, especially if my sinuses become blocked. But people hear that I had a sinus infection and now it’s fine. I LOOK fine, but a day of high brain work will leave me exhausted. And my memory isn’t all that I was. I’m SO grateful for the care that I received. Many fought for me to see the specialist that normally only see wounded soldiers. But dang, I miss the strong independent person that I used to be. And I don’t even look like myself anymore. Trivial, but I miss that curly hair. |
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Post by scrapmaven on Jun 21, 2025 20:39:00 GMT
You are not alone. Life threatening diseases and health problems leave a horrible after taste. It's very difficult to live in a world where it seems as though everyone else feels great and can do anything they want to do whenever they want to do it. Yet, you're stuck in your body. That's my story every single day. I should not be alive and I have no idea how I survived this long.
It's so frustrating not to be part of the rest of the world, but you can be happy and make the best of things. What do you enjoy doing that you can do when you feel up to it? It's important that you try and spend at least a little time each day doing something that you enjoy. Do you have someone that you can talk to about your feelings? Guilt has no place here. NONE! Nor does shame. You have survived a very serious brain tumor and you are doing the very best that you can. Find little ways to treat yourself with kindness. Little rewards when you have to have a scary test or in my case numerous procedures helped me to have something to look fwd to. That's also vital. Make sure that you always have something to look fwd to. You matter. You get to come first sometimes. |
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Post by ntsf on Jun 21, 2025 20:52:12 GMT
my dh had 35 years of surgery due to a ski accident right after we were married. he spent years on crutches, lost essential leg muscles, years of pins and wound packing and infections of various kinds.. and it has not been easy.
I can only say we do the one day at a time thing. he has always had a tough attitude. tough in "I'm doing the best I can with the current. medical advice". we don't give up. but it is not easy and there have been times we want to cry. our life gained more limits. that was just reality.. and again it has been one day at a time.
acceptance is hard.. even if you know you are lucky to be alive. I would say give yourself grace and ignore the external judgment from people if you can. I know my dh was driven nuts when someone complained about being on crutches for 6 weeks.. and dh would be on them for months and months. he has taken advantage of accessible sports organizations.. cause he couldn't sit at home. so now he is on a ski bike, but doesn't ski.
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allipeas
Junior Member
Posts: 50
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Post by allipeas on Jun 21, 2025 21:00:39 GMT
I have not personally experienced this but have been part of the rehab care team for many many patients. I personally find the expectation that people who have suffered a debilitating health event need to be grateful it wasn’t worse so toxic. People should be allowed to be angry and sad and resentful and whatever other feelings they feel. In a way, your life is now before the tumor and after the tumor. It’s never going to be the same. And you’ll get used to the after but it’s sort of like addiction recovery in that you’re never “done.” It’s a lifelong process, it will wax and wane. And no one on the outside will really understand. You mentioned how it’s harder to read and write but only you notice. I imagine it must be frustrating to have to put extra effort into things that used to be simple and no one even notices how much harder it is. It must be so exhausting. I hope you have good support and people around you who acknowledge how hard it must be and how great you’re doing. I don’t know if a support group with people who have shared your experience would be helpful. OHHHHH, I feel like you are INSIDE my brain! I have been a prolific writer for such a long time. Words that I should easily know, completely disappear from my memory or it can take 10 to 15 minutes for me to "find" the word...and by that time, the conversation has moved on. I can no longer spell well. Despite the physical issues that I suffer, it is the problems with words that is the hardest to deal with. DH has been a great support and I know he means well when he tells me that things could have been worse and that I am a fighter. He doesn't come from a place of minimizing. I don't say much about my battles because most people tell me that I look great and I know that I don't "look sick". I don't think they even have support groups here in Morocco. Like seriously, never heard about one. |
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Post by leslie132 on Jun 21, 2025 21:12:26 GMT
I think my husband has a very similar story to yours. He had a benign tumor on the base of his brain. It was on the left side of the brain starting to encroach onto the cerebellum. I think I’m describing that correctly. It’s been 12 years. We are like you and are just thankful that he made it out to the other side because if he would’ve waited much longer, the doctor thinks the tumor would’ve snapped his brain stem.
Having said that there are delays he has that drive him crazy. He was always very athletic and extremely coordinated. Anything from playing the piano to playing baseball ……. Even writing with his right hand. All of that has changed. His vision has been affected. The best way to explain it is if he is staring straight ahead and starts to look to the right he gets double vision. He now only writes left-handed which I’m amazed by. It’s such a simple thing to say, but it’s very hard to strengthen the weaker hand and wrist. It was a very hard pill to swallow when he would try to teach our children how to play baseball. Sometimes he can throw accurately and other times he throws straight down into the ground.
My husband tries to move on and just accept that this is his new normal. I don’t think he has the difficulties that you do……. and I know he still struggles so I completely understand how you are having a hard time being OK. Obviously you know it’s a blessing that you recovered, but I’m sure you wish you didn’t have these difficulties. Your difficulties are extreme and I think anyone would understand why you aren’t great or fine inside. I’m sorry for all of what you wrote. We had a daughter pass away a year before my husbands diagnosis……….I have learned that “accepting your new normal” simply sucks at times.
Sending well wishes and positive thoughts your way. If you ever need to vent feel free to reach out. I get it!
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Post by littlemama on Jun 21, 2025 21:16:10 GMT
Im so sorry you are dealing with these after effects. It is ok to be sad and to mourn what used to be, and to be frustrated.
Would the hospital have any idea if there are support groups or counselors you could meet with?
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Post by Delta Dawn on Jun 21, 2025 21:26:21 GMT
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allipeas
Junior Member
Posts: 50
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Post by allipeas on Jun 21, 2025 21:36:23 GMT
pantsonfire Just want to give you hugs and know that I see you and hope you know that you aren't alone. PM me if you need a friend. My spelling can be shit, but I am here if you need. scrapngranny I was about to type...I can't imagine going through something so scary, but then I was like...oh. I was lucky that I had at least three other opinions and all were the same and it was pretty easy getting into the surgery part. I can't imagine having to wait, knowing that something so serious was sitting inside your body like that. Thank you for the words of wisdom to help me down the rode. @bridge in MD All of this has been such an education in the brain, what it does and what happens when things go wrong. I know that my DH has suffered his own trauma in going through his side of it. And that's something I didn't mention is the "survivor guilt" that while you shouldn't be responsible for, but I know there are times that I feel it. Especially for my children. They have been great to help balance me when we are out walking places and they are aware of my limitations. I can't help but feel some guilt that it has affected my family in some way. I am glad to hear that your friend's husband is improving. Postivie sent his way. basket1lady Thank you for your kind words. There were times that I have been here to scroll by, but I just wasn't ready. Hope that makes sense. TPS has been such a great source of love and support. It was more energy than I could give at the time. GURL, we won't even go into the hair change. GAH, my hair looks like crap. Even when I get in the pool to swim, the pool is like "This is the best you got!!" It has grown in corse in some places and soft in some places, not to mention the gray! I have a nice wig that I wear out and some soft cancer caps at home. Thankful that you were able to get treatment and sorry that you have flair ups from time to time. I GET you! scrapmaven I have been witness to some of your health battles in the years I've been on TPS. I'm just at the beginning stage, so my heart hurts for all that you have indured. I have some amazing friends that I can joke with about it (that is my coping mechanism) who are also their when I get scanxiety for my 6th month MRIs. Coloring has been EVERYTHING this last year. When I couldn't write and my speech was a problem, I was always able to color. One of my BFFs convinced me to start an IG of some of my stuff (look below). I walk my dog every morning and do laps in the pool after which keep me active. I used to buy coloring books after scans, mandalas specifically. But now I have too many! HA. And a funny story about my spelling. My IG account is museful.mandela. It SHOULD be spelled mandala, because that's what I like to color mostly. But I mispelled the damn word and now I can't change it. ntsf Your reply really spoke to me about acceptance being hard. A couple of people that I went through treatment with have now passed away. When I have bad days, I think of them and tell myself that my limitations are nothing compared to what they went through. Most of the time, I don't get caught up in that. Today we got up early to go to a horse riding competition for my DD and I was doing great. The event was an hour and a half from where we live. I slept the whole way home and then I literally felt like my brain was powering down and went to lay down and slept for three hours. I just never know when that will hit. I applaud your DH's tough attitude because I know it isn't easy. I also applaud you for being his support because I am SURE it means more to him than you will ever know. I appreciate all of you giving me space to chat about this and giving of your experiences.
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allipeas
Junior Member
Posts: 50
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Post by allipeas on Jun 21, 2025 21:49:08 GMT
I think my husband has a very similar story to yours. He had a benign tumor on the base of his brain. It was on the left side of the brain starting to encroach onto the cerebellum. I think I’m describing that correctly. It’s been 12 years. We are like you and are just thankful that he made it out to the other side because if he would’ve waited much longer, the doctor thinks the tumor would’ve snapped his brain stem. Having said that there are delays he has that drive him crazy. He was always very athletic and extremely coordinated. Anything from playing the piano to playing baseball ……. Even writing with his right hand. All of that has changed. His vision has been affected. The best way to explain it is if he is staring straight ahead and starts to look to the right he gets double vision. He now only writes left-handed which I’m amazed by. It’s such a simple thing to say, but it’s very hard to strengthen the weaker hand and wrist. It was a very hard pill to swallow when he would try to teach our children how to play baseball. Sometimes he can throw accurately and other times he throws straight down into the ground. My husband tries to move on and just accept that this is his new normal. I don’t think he has the difficulties that you do……. and I know he still struggles so I completely understand how you are having a hard time being OK. Obviously you know it’s a blessing that you recovered, but I’m sure you wish you didn’t have these difficulties. Your difficulties are extreme and I think anyone would understand why you aren’t great or fine inside. I’m sorry for all of what you wrote. We had a daughter pass away a year before my husbands diagnosis……….I have learned that “accepting your new normal” simply sucks at times. Sending well wishes and positive thoughts your way. If you ever need to vent feel free to reach out. I get it! Oh my gosh! Was his left posterior fossa? While the remaining tumor is actually attached to the cerebellum, the outcome without surgery was the same as your husband's diagnosis. I was glad that DH was with me in the consultation because after the doctor said "this will end your life", I didn't hear anything else. It was like suddenly being in a tunnel with ringing in my ears. While I know the cerebellum is called the primitive brain, I equate it to the engine of the body. I think most people think coordination only affects walking, there are soooooo many things that are affected by that part of your brain, writing just to name a few. I so acknowledge his struggles and I know that we are less accepting of those struggles than those around us. I don't even know what to say about losing your daughter. I just don't have the words. I have been through a lot in my life, but that it's hard to even know the right words to say. I really didn't have fear of going into surgery, but for one. Not seeing my children again. I remember how difficult that was and it was for just a moment. I can only offer my heartfelt sorrow for you from one mom to another. You are right that sometimes, it simply sucks. The same to you, feel free to reach out to me as well. |
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seaexplore
Prolific Pea
Posts: 9,366
Apr 25, 2015 23:57:30 GMT
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Post by seaexplore on Jun 21, 2025 22:24:49 GMT
This is SUPER long! I've never typed it all out!
I'm living this from the care-giver side.
My husband was diagnosed with melanoma on his back in December 2013- surgery with a clear margin and he was pronounced good to go. It popped up in his left axillary lymph nodes in June 2023. He was given Keytruda which caused his body to attack his liver and ended up with 10 weeks of prednisone to end the reaction. He had a brain MRI in August 2023 which showed nothing there (other than his brain)- melanoma likes the brain and liver and lungs. Surgery in the armpit in October 2023 removed, what the surgeon said- "massive amounts of cancer wrapped around veins and nerves" but he said he got all of it that he could see. He has neuropathy in his left arm from that.
On his 50th birthday- December 12, 2023- he called me at work to let me know he had a "seizure or something" and called 911 on himself. I raced home knowing that the melanoma had. made its way to his brain. I didn't tell him my suspicions. My uncle had passed summer 2023 from brain melanoma and he also "had a seizure". The MRI in hospital showed THREE masses in his brain- (post central gyrus, vermis, left inferior parietal cortex, pre central gyrus) ranging in size from 12 mm x 13 mm x 16 mm to 3mm- pressing on nerves causing his left arm to spasm. He did 5 treatments of targeted radiation for that. Thankfully he didn't have any "effects" other than what he already was dealing with but he still had a few incidents of spasms and he wasn't allowed to drive for 6 months. That was the hardest thing on him I think- no driving. He was now fully dependent of others for his mobility. He was put on anti-seizure meds and decadron to help with the brain swelling but he still had them from time to time. Eventually he didn't have anymore and we were feeling good about prognosis.
February 2024, he had a mass pop up on his neck- it grew to the size of a golf ball in less than 8 weeks! In March 2024, he came home with a horrible headache one day- figuring it was a migraine I put him to bed. He didn't move from bed for 4 days. Refused food, wouldn't drink anything, it was heartbreaking. I finally was able to contact his doctor who said, "I guess it's time for another brain MRI"- took a week to get him in. There were EIGHT new tumors in his brain (right frontal lobe, right parietal lobe, anterior corpus callosum, left frontal lobe, left superior occipital lobe, right cerebellar hemisphere, cerebellar vermis)- ranging from 2.2 cm x1.8 cm to 0.3 cm x0.3 cm). He had no balance, was peeing himself, wasn't hungry, was totally complacent, not interested in anything- it was like living with someone with dementia when having a conversation. I'd hand him food and tell him to eat it and he would just put it off to the side. He would shower but he didn't wash his hair and it became matted and gross. DD and I had to convince him to let us give him a haircut- he was just jamming a beanie on to cover it up. They did targeted radiation on those 8 as well as back on decadron for brain swelling. He started a course of oral chemo which completely diminished the tumor on his neck in 13 days but put him in the hospital with reactions to his liver yet again. Back on the steroid to cool the reaction.
Chemo #2 was given in May 2024 and he lasted all of 3 days on it before the muscle and joint pain became unbearable- he was given dilaudid and it did NOTHING for the pain! Vicodin didn't touch it. So, he went off the chemo. He now has neuropathy in his feet caused by the chemo to go with the neuropathy in his hands. I spent last summer and fall "rehabbing" him by making him walk with me at our youngest kids soccer practice. He started only shuffling .2 miles with me and by the end of the season he was walking more than a mile at a time.
In the fall he was given opdivo/yervoy and did 4 doses of that, then they switched to opdivo only and he was able to get 2 of the doses in before his liver turned on him yet again in February 2025. This time he turned yellow and his numbers were HORRIBLE! He spent a week in the hospital to get the reaction reversed.
Since then, he's been working around the house but needs to take a break every hour or so. He works VERY slowly. This is someone who used to build homes and work for 12 hours no break. It's really hard on him to not be able to do what he used to. I know it's frustrating for him. There are times he will yell at himself because he gets so frustrated. He doesn't have nearly the strength he used to have. BUT he's moving and trying, and doing. Right now he's working on making it easier on me if/when he dies. He sold real estate we were sitting on, bought me a new car (that he's claimed while he's still alive and I'm good with it), sold our boat, built planting beds in the backyard, ripped out our bbq island that is falling apart. BUT these things are taking him 10 times longer to do.
He has ONE chemo medication option left for his brain melanoma that they're holding off on because it's the least well tolerated and it's our final chance to treat it. We live in 3 month chunks between scans. When the time for his scan draws near he gets stressed and cranky and anxious. We just ride it out because we know what he's dealing with. This past week has been his scan week- MRI Monday shows stable but not resolved tumors. PET was today so we don't have results back yet.
AND I've been teaching thru this all as well as making sure the kids get to their sports and school.
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Post by Texas Scrap on Jun 21, 2025 23:25:15 GMT
Sending hugs to all who are dealing with your own physical struggles or care giving someone you love. My experience is with chronic long covid as well as a few other chronic issues that have popped up in the past 12 months. To what night nurse said, I think the thing I have been working through to accept that is that my body will never be the same that is was pre-long covid, pre- (other 2 issues). I think there is space for both gratitude and voicing/venting what is hard and painful and sucks about living with a body that is not functioning as it used to. I kind of feel sometimes like a car that hit the 100K mark and parts are starting to break that are not replaceable. SO I am repairing the best I can, but the car will never run the way it used to and now I notice other things failing. I took for granted all of the things that just "worked" before and now I am feeling the pain of what is no longer working the way I expect it to.
I think too, while there is physical pain and suffering, along side of that are mental, emotional and spiritual struggles and suffering. I do think what has helped me the most is creating agency for myself in figuring out what I can control and then acknowledging what I can't. Some days are just easier than others to make peace with. It feels like a daily process for me and when I am really struggling, it feels moment to moment.
I think the other part that is hard is all of the uncertainty of what will happen next.
it takes a lot of courage to post and share where you are at. Sending lots of love your way.
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Post by Zee on Jun 22, 2025 18:53:16 GMT
Hugs to all of you who are dealing with these issues. I couldn't say anything better than what nightnurse already said. Prayers for peace with your body and your "new normal" while you navigate the after effects. ❤️🫶🏻🙏🏼 |
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allipeas
Junior Member
Posts: 50
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Post by allipeas on Jun 22, 2025 20:28:40 GMT
seaexplore My heart goes out to you and your husband. That is just A LOT. I've watched my husband deal with all of my scans and picking up results and doing it silently trying to keep me in a good place. But I know that he has fear and emotions he keeps hidden from me. It's hard being the care giver. I know it is. It's so damn scary when you inside you are aware that your brain isn't working right and you can't make it work right. It's a helplessness that I can't even describe. I onlcy had one tumor but it was a massive jerk of one. It was 5cm, about the size of a good lemon. It grew right in the space behind my left ear, no idea for how long. But it was starting to press on my brain stem and between the pressure from the edema or the pressing on my brain stem, I was weeks away from being unlived. Like someone said upwards, my life is now BT (before tumor) and AT (after tumor). I wish all good things for your DH. Thank you for being his soldier.
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allipeas
Junior Member
Posts: 50
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Post by allipeas on Jun 22, 2025 20:29:55 GMT
Sending hugs to all who are dealing with your own physical struggles or care giving someone you love. My experience is with chronic long covid as well as a few other chronic issues that have popped up in the past 12 months. To what night nurse said, I think the thing I have been working through to accept that is that my body will never be the same that is was pre-long covid, pre- (other 2 issues). I think there is space for both gratitude and voicing/venting what is hard and painful and sucks about living with a body that is not functioning as it used to. I kind of feel sometimes like a car that hit the 100K mark and parts are starting to break that are not replaceable. SO I am repairing the best I can, but the car will never run the way it used to and now I notice other things failing. I took for granted all of the things that just "worked" before and now I am feeling the pain of what is no longer working the way I expect it to. I think too, while there is physical pain and suffering, along side of that are mental, emotional and spiritual struggles and suffering. I do think what has helped me the most is creating agency for myself in figuring out what I can control and then acknowledging what I can't. Some days are just easier than others to make peace with. It feels like a daily process for me and when I am really struggling, it feels moment to moment. I think the other part that is hard is all of the uncertainty of what will happen next. it takes a lot of courage to post and share where you are at. Sending lots of love your way. Thank you for your words. I hope you find healing and peace in your journey. |
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allipeas
Junior Member
Posts: 50
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Post by allipeas on Jun 22, 2025 20:30:52 GMT
Hugs to all of you who are dealing with these issues. I couldn't say anything better than what nightnurse already said. Prayers for peace with your body and your "new normal" while you navigate the after effects. ❤️🫶🏻🙏🏼 I hope you know what you mean to me @zee. All the good things to you friend. ALL the good things! |
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Post by Zee on Jun 22, 2025 21:03:46 GMT
Hugs to all of you who are dealing with these issues. I couldn't say anything better than what nightnurse already said. Prayers for peace with your body and your "new normal" while you navigate the after effects. ❤️🫶🏻🙏🏼 I hope you know what you mean to me @zee. All the good things to you friend. ALL the good things! Same to you sister ❤️❤️❤️ |
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Post by Delta Dawn on Jun 22, 2025 21:23:45 GMT
www.braintumour.ca/support-group/vancouver-support-group-affiliated/#:~:text=This%20brain%20tumour%20support%20group,am%20to%2011:00%20am This is in BC where I live. I will try to do some reading. It’s run by the BC Cancer Agency but I wonder if it applies to all people dealing with brain tumours. There is also an in-person meeting in Victoria that you cannot attend. I will keep looking to see what else I can find. I know you don’t have cancer but it is still close enough and maybe you could join one of the groups online as they say it’s over Zoom. I am going to keep looking.❤️
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Post by taylortroop on Jun 22, 2025 21:45:12 GMT
scrapngranny: Your post hit me hard. I’m so glad that even with having to undergo that horrendous surgery, you made it. My dad was 64 years old in 2004 when he died suddenly of an abdominal aortic aneurysm. The aneurysm was 4 cm in diameter and our small town hospital was in the process of getting an airlift to a university hospital an hour away when the aneurysm burst and he died immediately. My brother and I didn’t have a chance to say goodbye or be with him when he died. It was awful. Since AAA are hereditary, both my brother and I have annual diagnostic ultrasounds to check.
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seaexplore
Prolific Pea
Posts: 9,366
Apr 25, 2015 23:57:30 GMT
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Post by seaexplore on Jun 22, 2025 21:46:20 GMT
seaexplore My heart goes out to you and your husband. That is just A LOT. I've watched my husband deal with all of my scans and picking up results and doing it silently trying to keep me in a good place. But I know that he has fear and emotions he keeps hidden from me. It's hard being the care giver. I know it is. It's so damn scary when you inside you are aware that your brain isn't working right and you can't make it work right. It's a helplessness that I can't even describe. I onlcy had one tumor but it was a massive jerk of one. It was 5cm, about the size of a good lemon. It grew right in the space behind my left ear, no idea for how long. But it was starting to press on my brain stem and between the pressure from the edema or the pressing on my brain stem, I was weeks away from being unlived. Like someone said upwards, my life is now BT (before tumor) and AT (after tumor). I wish all good things for your DH. Thank you for being his soldier. I know it's hard for him so I try to push without pushing too much. It's a very fine line. I'm glad you're still here AT for us to chat. We live BM (before melanoma) and AM (after melanoma). Today is a "good day" and he's cleaning out the shed. He gets on these kicks to clean out something and trashes EVERYTHING without thinking that it might be useable for someone else. So, I come in and tell him that we need to see if anyone wants it rather than putting it in the landfill. I jokingly call it "death cleaning" but that's exactly what it is. |
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allipeas
Junior Member
Posts: 50
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Post by allipeas on Jun 23, 2025 10:32:41 GMT
www.braintumour.ca/support-group/vancouver-support-group-affiliated/#:~:text=This%20brain%20tumour%20support%20group,am%20to%2011:00%20am This is in BC where I live. I will try to do some reading. It’s run by the BC Cancer Agency but I wonder if it applies to all people dealing with brain tumours. There is also an in-person meeting in Victoria that you cannot attend. I will keep looking to see what else I can find. I know you don’t have cancer but it is still close enough and maybe you could join one of the groups online as they say it’s over Zoom. I am going to keep looking.❤️ Thank you so much. You are sooooo kind to seek out these groups for me. I will definitely check them out. I've been told that most treatment for benign brain tumors is quite similar to malignant ones. So hopefully they will accept me. |
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allipeas
Junior Member
Posts: 50
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Post by allipeas on Jun 23, 2025 10:40:13 GMT
seaexplore My heart goes out to you and your husband. That is just A LOT. I've watched my husband deal with all of my scans and picking up results and doing it silently trying to keep me in a good place. But I know that he has fear and emotions he keeps hidden from me. It's hard being the care giver. I know it is. It's so damn scary when you inside you are aware that your brain isn't working right and you can't make it work right. It's a helplessness that I can't even describe. I onlcy had one tumor but it was a massive jerk of one. It was 5cm, about the size of a good lemon. It grew right in the space behind my left ear, no idea for how long. But it was starting to press on my brain stem and between the pressure from the edema or the pressing on my brain stem, I was weeks away from being unlived. Like someone said upwards, my life is now BT (before tumor) and AT (after tumor). I wish all good things for your DH. Thank you for being his soldier. I know it's hard for him so I try to push without pushing too much. It's a very fine line. I'm glad you're still here AT for us to chat. We live BM (before melanoma) and AM (after melanoma). Today is a "good day" and he's cleaning out the shed. He gets on these kicks to clean out something and trashes EVERYTHING without thinking that it might be useable for someone else. So, I come in and tell him that we need to see if anyone wants it rather than putting it in the landfill. I jokingly call it "death cleaning" but that's exactly what it is. OMG! I wonder if "death cleaning" is a thing?!?! I have a list this summer of things I want to clean out. DS is leaving for college in August, so this week both he and DD are doing a deep clean of their rooms. I've been getting death stares since I told them. The week after, under the stairs is getting a massive clean out as I'm sure there is a troll living there. The week after that, the garage is going to get cleaned out. For me, I can't STAND to see mess. It's like it overloads my brain and I can't think. Like the 404 error message on a computer, I literally can't process anything when I see things disorganized. I was a pretty organized person BT so I would argue that AT it amplified that. Was your husband a neat freak BT? |
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Post by crimsoncat05 on Jun 23, 2025 15:01:24 GMT
I don't think they even have support groups here in Morocco. Like seriously, never heard about one. can you find an online group to be part of?? that might meet via Zoom, etc.? I haven't had anything serious happen to me health-wise that has had lasting effects, but I've recently been dealing with multiple smallish age-related health issues, and I'm not dealing well with them at all. Age-related / menopause-related brain fog is bad enough for me to deal with, I can't even imagine the mental strength it takes to shift your thinking about 'limitations' and 'expectations' after a very serious health issue. HUGS to every one of you. |
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Post by scrapmaven on Jun 23, 2025 16:03:17 GMT
seaexplore, my heart goes out to you. We lost my mother to melanoma. It's a horrible disease and know that you are in my heart.
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Post by flanz on Jun 23, 2025 17:21:35 GMT
Thank you for this thread allipeas and for your honesty. It's a gift. My heart genuinely hurts for each of you who have endured or are currently enduring the medical situations you personally deal with and/or those affecting people you care for and love. Each of you posting here, in sharing from your hearts, has given us reading an enormous gift. It's really hard to step inside someone's shoes, to try to fully comprehend what their lives might be like. Your sharing helps grow empathy and compassion. In addition to the obvious physical challenges, all of the invisible struggles are so very real. My experience is different than those you have all shared about but I think that I understand some of what you deal with. For decades I've dealt with chronic sometimes severe depression, chronic sinus migraines / severe brain fog which had me miserable for six months of every year, debilitating menstrual pain month after month... and I often would push through and use every last ounce of energy I had to attend x,y,z, and then collapse like a useless blob once I got home. Most times no one could tell that there was something very wrong. Other times it was impossible to hide and I stayed home curled up in pain seeking answers on the internet. I had some great insights and breakthroughs by reading the anecdotal accounts of others. Not everything has been researched in double-blind studies. My love and fervent best wishes are with each of you who are struggling, personally or as caregivers. And I hope you all have all of the IRL support you need. You know the peas are here for you. |
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Post by katiekaty on Jun 23, 2025 19:36:50 GMT
I usually don’t talk much about my chronic issues because people then think I am “sick” and want to feel sorry. I just don’t think or dwell on it each day is just each day, some better than other. I don’t do it for anyone else. I do it for me and me alone. 12 years ago I only took the occasional Tylenol for a headache. Today , each day, is a routine of a total of 32 pills, with 38 on Wednesdays and two injections a week. In 12 years I have had close to 40 surgeries, 5 eye surgeries, and countless steroid injections, hours of physical therapy.
And no, I am NOT sick. I don’t let any chronic condition be described as a chronic illness. Everything is managed very well, I have the absolute best doctors available. Great family support. Very good insurance, costly but worth every penny.
The rest of the year will bring two more eye surgeries, a left total knee replacement, and right thumb reconstruction with two trigger finger releases on the same hand.
I am very fortunate to have heard the words of my Rheumatologist, “you can choose pain meds and become handicapped and wheelchair bound in less than a year, or, we find the cause of each problem and deal with them as they crop up and you live a full life!” Wise woman and my hero.
I am a nurse, and believe it or not, I still work, with time off as needed.
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