Just Being Honest
Comments
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Can I just share...
I received a 'get well card' after my surgery with a note saying they knew exactly how I felt since they had a kidney stone one time.
I too am a pretty private person. I have friends and even family that don't know of my diagnosis or know that I recently had surgery. It seems almost 'easier' if they don't know.
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GoneMelBlessed said:Wow
Wow, so many of us with the same anxiety and feelings. I have been a healthy Registered Nurse for 25 years and this cancer has thrown me for a loop. Anxious about everything! Never had a second thought about aches or pains, now when my back aches I’m sure it’s Mets. I have a panic attack if I need to take a cold tablet and couldn’t take pain meds at all due to panic attack. I have anxiety medication, but even get anxious taking it so I break it in half. The worst part is everyone thinks I’m fine because the cancer “is gone”. I am very blessed to have caught this early, have good insurance and wonderful husband and coworkers but they just don’t understand. I’m very private so it feels good to get this out there. Thank you to everyone who shares so much on this site.
I hate the words cured and gone. My cancer was very large (stage 3, size of a football). I had a radical neph on 03/20/17. I have heard from admin folks at the medical group that was treating me that they could not understand why I wanted consults with x, y, and z because I was cured. I don't have cancer, nothing special needs to be done for me. It honestly makes my blood boil, and adds to the anxiety I am already dealing with with this mess. Yes, we get surgery and the cancer goes away. However, there's always that chance that one cell was left/missed. The chance that we may be "fine" for a few years, but then cancer rears it's ugly head again.
I started working from home about 5 weeks after my surgery, and returned full time after 8 weeks. I have been dealing with occasional pain, sheer exhaustion, anemia, low vitamin D, and general illness from my immune system being a little low. It's funny how quickly people forget what we have been through, what we continue to go through, and what we may go through just because we "look good" or go about our daily lives because we have to.
I am thankful for this forum and the one on SmartPatients.com too. Great information from other people dealing with the same/similar issues and conditions. We are in a club that no one else can truly understand until they are part of the same club.
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tango & klj15
A kidney stone? Lol that cracks me up! People really don't get it. Can be frustrating at times. It is not a 1 and done scenario! Like I said before...Life changing. And yes klj15 it for sure can come back so we have to live with knowing that. It isn't like "Oh you had a cold? Glad it is gone and you are feeling better." That is how most talk about our situation. Tango you are right. Sometimes it isn't worth the breath explaining it to people. Most reactions are ridiculous anyway.
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Well aren't you just the sweetest thing!
And yes, the ride is a wild one, to be sure. Regardless of the outcome. It changes our lives, some profoundly, some not so much. I truly think if we are lucky enough to find each other on a forum such as this, we have an obligation to share in an effort to help each other where we can. I always say I only wish I would have found this site before my surgery, it would have been SO helpful.
Thank you all!
Donna~
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I think we all might have
I think we all might have ptsd - having cancer takes your breath away. I’m a private person too but even family members who know just think I’m cured. The back of my mind I keep thinking about someone who said it’s not if the cancer is coming back but when. I guess none of us will ever be at our old normal. I’m best she I’m busy but then the night comes arpuns and draws me into its fear. I live alone and don’t want to become handicapped. I pray all of us learn to live as normal a life as we possibly can.
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Thank you!
I want to thank you for all of your posts. I have neen a member on here for a few months. I have not posted much but i do read several posts and appreciate you and many others for your continued support. My name is Kristal. Im 44 yeara old. I was diagnosed with RCC through an incidental finding on NOv 1, 2017. The tumor was 5.9 cm. I had my first appointment with a surgeon at MD Anderson on November 15 and had an open partial nephrectomy on November 27. The tumor had invaded my renal sinus. My surgeon told me margins were clear. Stage 3 Furman grade 2.
I was readmitted into the hospital 3 weeks later with pancreatitis For 4 days. This was worse than the surgery. I hope i never have that again!
Now that the cancer is gone.... dont get me wrong.... i am grateful.... i am blessed! BUT..... part of me.... is so scared.... SO SO SCARED it is going to come back. The surgeon told me i have a 30 to 35 percent chance of reoccurence And there is nothing i can do to decrease that number. It terrifies me. I feel like im rambling and im not going to go back and reread this because i probably wont hit aubmit if i do. I apologize for typos and rambling. I hope this makes sense.
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Krissyd glad you hit submit
I think we are worried about it coming back. I was lucky, stage 1. I still have the occasional voice and dread my first scan! Something I have learned and maybe we are all meant to learn is life is short and precious. We have to try not to spend to much time worrying about what might be and live. Before tumor I would obsess, am I a good enough mom, wife, student, employee. I had guilt for going to school and not being with my kids as much. Do all of those little thoughts creep in sure, but I am trying to just live and do the best I can. If I worry about what might be I can’t enjoy now.
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fear
I cannot tell you the anxiety and fear that creeps up on me out of nowhere. The fear of recurrence is almost crippling at times. I am working so hard at trying to remain positive. I am thankful for all the encouragement I have found on this forum.
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They don't get itAnnissaP said:tango & klj15
A kidney stone? Lol that cracks me up! People really don't get it. Can be frustrating at times. It is not a 1 and done scenario! Like I said before...Life changing. And yes klj15 it for sure can come back so we have to live with knowing that. It isn't like "Oh you had a cold? Glad it is gone and you are feeling better." That is how most talk about our situation. Tango you are right. Sometimes it isn't worth the breath explaining it to people. Most reactions are ridiculous anyway.
They don't get it, but I think there are two things, often people dismiss things because they want it/you to be ok. They also like to look on the positive side. I think there is a way you don't have to say I am great', ok, you can say that you are progressing, getting there, still not 100%, I guess it depends who it is. I didn't get a lot of anxiety pre op, but there was one night where I was thinking, well it's small RCC, found early, good surgeon/medical/insurance and a 90% survial rate in 5 or so years and that made me really depressed. I voiced this concern to my husband of 22 years. Not a sensitive new age guy. He is like, 9 out of 10 is great. What are you worried about. Oh I don't know - 3 kids, the dog, the fact that no one seems to know where the toilet paper is kept... and I said to him ' What if I told you there is a 1 in 10 chance your dinner tonight will be a complete bust, burnt, cold, vile'. He loves his dinner, highlight of his day. He joked back i must not be cooking fish, (cause the odds of it being bad would be so much higher than 1 in 10). OK, a bit random, but it highlighted to me that the anxiety part can be a really destructive to an otherwise 'normal' day and wanting or needing people to share it with you can sometimes be hitting you head up agains a brick wall. And when people who we are close to (or just random strangers) make assumptions about how we feel or should feel it can make us so cranky and put out and in quite a state.
Obviously my story turned out differently it wasn't an RCC and the surgical removal of the tumour is considered 'curative'. I stll have some unaswered questions, how come no one followed me up after the kidney stone in 2016 - the mass was marked on the scans. Have I really enquired enough that I need NO follow up at all. It was a quick call with the surgeon, he was delighted. Should I take that at face value? I never saw a written report. Those kinds of things. I have decided that there isn't any further need for me to hound the medical profession on this subject, I will check my file next time I see the GP, but it does and has highighted to me how much the mental aspect of anything is a big part of the suffering and recovery. Ironically for many with a small RCC there are zero physical ailments until the actual surgery!
BTW went to pilates today, the teacher was irritating in the extreme, I was puffed it is 100% humidity here at the moment and I had overdone it clearing drains and gardening.. we started a difficult ab exercise and I was stumbling (because i am unco as well) and she said 'you don't have any problems do you' and I was quite cross and I said, 'well apart form having some kindey removed, no' and she was 'oh well thats not bad is it'. Dipstick. And then I gave myself a little talking to to get over myself and get on with the class and get out of it what I came there for and not let her ignorance (and I don't expect her to be an expert on kidney crap) but she was actually a bad teacher for a lot of other reasons. It highlighted to me that I need to own how I respond in situations, I can't have other peoople react how I think they should. Lol. After the class she came up to me (everyone else was a svelte 20 year old, I got 30 years on them) and goes, 'you did great, I guess it's was just like when I got my boobs done.' What the? Shakes head and goes to the car.
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Mental health
Thank you for being honest! This has been a roller coaster ride for sure! My husband has Ureilthial Carcinoma stage 4.
Hr completed 4 rounds, 21 day cycle. Some of the tumors shrunk and one got bigger. So they switched him to immune therapy Ketruda. He's still very sick and we battle to keep his pain under control. He takes all the necessary meds and he is so easy to care for. We have also added medical marijuana to the pic and that has helped tremendously in the form of edibles and the concentrate oil. So we have hope that he has some time left to enjoy!
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Mental health
Thank you for being honest! This has been a roller coaster ride for sure! My husband has Ureilthial Carcinoma stage 4.
Hr completed 4 rounds, 21 day cycle. Some of the tumors shrunk and one got bigger. So they switched him to immune therapy Ketruda. He's still very sick and we battle to keep his pain under control. He takes all the necessary meds and he is so easy to care for. We have also added medical marijuana to the pic and that has helped tremendously in the form of edibles and the concentrate oil. So we have hope that he has some time left to enjoy!
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They try, but often miss the markkiwi68 said:They don't get it
They don't get it, but I think there are two things, often people dismiss things because they want it/you to be ok. They also like to look on the positive side. I think there is a way you don't have to say I am great', ok, you can say that you are progressing, getting there, still not 100%, I guess it depends who it is. I didn't get a lot of anxiety pre op, but there was one night where I was thinking, well it's small RCC, found early, good surgeon/medical/insurance and a 90% survial rate in 5 or so years and that made me really depressed. I voiced this concern to my husband of 22 years. Not a sensitive new age guy. He is like, 9 out of 10 is great. What are you worried about. Oh I don't know - 3 kids, the dog, the fact that no one seems to know where the toilet paper is kept... and I said to him ' What if I told you there is a 1 in 10 chance your dinner tonight will be a complete bust, burnt, cold, vile'. He loves his dinner, highlight of his day. He joked back i must not be cooking fish, (cause the odds of it being bad would be so much higher than 1 in 10). OK, a bit random, but it highlighted to me that the anxiety part can be a really destructive to an otherwise 'normal' day and wanting or needing people to share it with you can sometimes be hitting you head up agains a brick wall. And when people who we are close to (or just random strangers) make assumptions about how we feel or should feel it can make us so cranky and put out and in quite a state.
Obviously my story turned out differently it wasn't an RCC and the surgical removal of the tumour is considered 'curative'. I stll have some unaswered questions, how come no one followed me up after the kidney stone in 2016 - the mass was marked on the scans. Have I really enquired enough that I need NO follow up at all. It was a quick call with the surgeon, he was delighted. Should I take that at face value? I never saw a written report. Those kinds of things. I have decided that there isn't any further need for me to hound the medical profession on this subject, I will check my file next time I see the GP, but it does and has highighted to me how much the mental aspect of anything is a big part of the suffering and recovery. Ironically for many with a small RCC there are zero physical ailments until the actual surgery!
BTW went to pilates today, the teacher was irritating in the extreme, I was puffed it is 100% humidity here at the moment and I had overdone it clearing drains and gardening.. we started a difficult ab exercise and I was stumbling (because i am unco as well) and she said 'you don't have any problems do you' and I was quite cross and I said, 'well apart form having some kindey removed, no' and she was 'oh well thats not bad is it'. Dipstick. And then I gave myself a little talking to to get over myself and get on with the class and get out of it what I came there for and not let her ignorance (and I don't expect her to be an expert on kidney crap) but she was actually a bad teacher for a lot of other reasons. It highlighted to me that I need to own how I respond in situations, I can't have other peoople react how I think they should. Lol. After the class she came up to me (everyone else was a svelte 20 year old, I got 30 years on them) and goes, 'you did great, I guess it's was just like when I got my boobs done.' What the? Shakes head and goes to the car.
People definitely try to be supportive - or think what they're saying is supportive. And on the surface, it might be. I have a FB group for my friends who want to keep updated about my progress with this. When I post some new news, I get a lot of supportive comments: "We've got your back," "You're gonna crush this thing," "I'm betting on you to kick cancer's rear end," etc. And I do appreciate that. The reality is, I'm looking at a shorter life than I may have originally planned. Yesterday my doc said "years, not months." When I pressed her on this, she said probably less than 10, but that depends on how the medication I'll be starting next month goes. Some people can stay on it 10 years or more with no recurrance after the meds shrunk their tumors. Some others may be on it for a few years before it stops working. For others, it may not work at all. So I could be around another 10 years or more, or I could be gone a lot sooner than that. It's hard to convey, even to the most supportive friend, how it feels to hear that news. It's hard enough for me to process this, let alone expect someone who's not going through it to understand the nuances of what I'm feeling.
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