Hello
This is my first time ever posting anything like this anywhere. I found this website and this board last night in the middle of a mini melt down when my husband suggested I find people to talk to who may understand what I am going through right now. I am kind of depserate for someone to talk to who does understand, so here I am.
For some background, I just turned 43, have had Hashimoto's for ages which I take synthyroid for. About a year and a half ago it was discovered I have a pituitary tumor, 5mm which has caused my pituitary to not function at all. I inject human growth hormone daily for this and just have to get yearly MRIs to ensure it is not growing. It is not cancerous, but if it grows, it will have to be removed- so far so good with this. On November 3rd I over exerted myself and also fell down. That evening I started noticing blood in my urine, but with no pain I didn't think much of it. After a few days of bloody urine, I went to the doctor thinking I could have an infection or maybe kidney stones. He sent me for an ultrasound when there was no infection detected. He called right away to send me for an MRI of my abdomen. There was a mass on my right kidney that was a little over 10cm in every direction and my next appointment was with a urologist/surgeon. I had a full nephroctomy of my right kidney, the mass and all the surrounding tissue on Dec. 3rd.
From the first sypmtom to surgey was just one month, but it felt like a year. In my naivete, I did not expect that to be as painful as it was and recovery was very hard for the first week. Tomorrow will be 2 weeks post surgery and I was finally able to return to work this week, on Wednesday. At least I work from home, if I actually had to leave for an office, I don't think I would have gone back yet. I am not sure I was really ready, but my brain was spinning and there is only so much bad TV you can watch when you can't physically do much else. I also thought working would get my mind off things and improve my mood, but it hasn't.
My emotions are all over the place, but I am mostly dperessed. We had my post surgery follow up with the surgeon this week, where he told me the tumor was in fact cancer, but all the margins are clear and he is confident it was all removed. Very good news, and I am grateful, truly, but for some reason I still cannot stop feeling sorry for myself. Why did this happen to me? Don't I have enough going on in my life already? And the worst thought of all, what is going to happen to me next? Are my kids going to have these issues later on in life too? Did I give them this predispostion to have tumors and horrible things? And then there is the crushing guilt I feel when I start to feel sorry for myself, like I have no right at all. So many people are diagnosed with cancer and have to do chemo, radiation, etc. I had surgery and I MAY be fine now, who the hell am I to even complain?
I was the positive person who held everyone else together during all of this when they were freaking out. Now everyone is happy surgery is over and thinks everything is great again, and I am a total wreck. Part of this could be from discontinuing use of the pain pills finally, but I feel bad. I can't really talk to anyone, they have done nothing but worry about me for over a month now and that isn't fair to them. I am not sure any of them would really understand anyway. I just sit here and wait for the other shoe to drop on me that may or may not. I feel like I have lost all control of my life.
Comments
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Talk to us/
mlph,
We all felt that way in the begining. I was nephed 14 years ago. As you said the post surgery is not fun. Everyday will get a little better with a bad day here and there. At 10 cm follow up scans are a must.
Icemantoo
Icemantoo
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Thank you. How long did iticemantoo said:Talk to us/
mlph,
We all felt that way in the begining. I was nephed 14 years ago. As you said the post surgery is not fun. Everyday will get a little better with a bad day here and there. At 10 cm follow up scans are a must.
Icemantoo
Icemantoo
Thank you. How long did it take for you to feel like a normal person again? I feel like there is something terrible waiting to happen every day now. It is awful.
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Keep talking
I bet you feel better already. Health issues are nothing new to you. This time you had a major organ removed. Until all of your physiology has recovered to your potential, how could you feel better? The old normal you knew is gone. The new normal takes time to become the new normal. You can't force it to happen. If you are athletic it is often much easier and quicker because your body is used to being stressed. Without it, the physical insult of the procedure lowers your reserves and it may take a little longer to reach your potential. Yet here you are already working when most of us need a month or three if available. Nearly 100% of people who return to work as soon as you, say they returned to soon. So please don't hurt yourself by following your instinct to over push.
Emotions everywhere, mostly depressed. From diagnosis till now you have been a brave soldier. Dealt with so much and probably held your family together too. If they said they had to pull your kidney out through your nose, you would have done it. But now you are tired. Physically and mentally. You need a big cry to release the stress and have your mini breakdown. Depression,guilt, why me? The classic post nephrectomy blues. So common that it reached #1 in the charts. That song will stick in your head. Many here have happily had professional help coping. Many are spin doctors who make having an abcess sound desirable.
You are not alone in what you are dealing with. Far more similarities than differences in what people have experienced. Unfortunately you are the latest to join the club. BTW, not all of us remain nuts. But for some it helps.
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Normal is...mlph4021 said:Thank you. How long did it
Thank you. How long did it take for you to feel like a normal person again? I feel like there is something terrible waiting to happen every day now. It is awful.
"Normal is nothing more than a cycle on a washing machine," to quote Whoopie Goldberg. I imagine myself sitting across the table from her as Guinan in Ten-Forward, the bar and lounge on the Enterprise in StarTrek the Next Generation, listening to her encouragement and wisdom. If this image does nothing for you and you're not a Trekie -- Or you want more genuine in-time interaction with human non-actors, this is the place. Definitely.
My time between discovery of the mass and surgery was eight months, so I went through a lot of the varieties of crazy then. You're way ahead of me, surgery-wise. I just got discharged yesterday, post Tuesday's surgery. I'm in awe that you're working. Even looking forward to the next ten days, I'm not sure the scattered flakeyness is going to subside any time soon.
I've misplaced my glasses half a dozen times in less than 24 hours and I need them to see past my elbows, plus I was sleeping for part of that time (so what are they doing OFF of my face during my waking hours in the first place). It's different kinds of crazy. It's a process, though. You're probably already catching on to that.
Definitely, what Fox (and others) say. They've been at this longer than you or I have. It's gets better, it gets different.
Oh, and the anxiety about what's going to happen next? I used to be so anxious that it was rediculous, and that was baseline for me. I thought I was doing better, yet I spent most of this year with my jaw clenched (Oh my gosh -- I just checked and it's... not!). I did decide, however, that I wasn't going to ask, "What else could happen?" (as in, "All this stuff that's happened on me, how could anything else happen?") because the kosmos has a better imagination than I do.
Keep us posted on how you're doing. We're here. This is definitely the place.
Jerzy
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Ha ha, thank you all. I am
Ha ha, thank you all. I am sitting here crying as I read and then type. As far as work goes, like I said, I work from home. My job can get a little nuts mentally, but I go crazy not working. Before my second daughter was born, I went and bought enough paint to paint the entire interior of our house while I was on materinity leave. I started painting the day after we came home from the hospital, every time she slept. I am a little high strung I guess you could say.
I have 2 hours left of work to go today, and I can at least say I am looking forward to the weekend, if only to not have to set an alarm, so I suppose some "normal" is creeping back in? I may try and walk a mile or two when I am done for the day if I can get one of my kids to tie my tennis shoes (still hurts a little to bend over) but maybe some movement and fresh air would do me some good? I would go do some Christmas shopping but panicked when I was told I was having surgery on Dec. 3rd, so already bought and wrapped everything in case I would be unable to, LOL. And maybe tomorrow I could go get one of those angels off the trees at the mall and buy a gift for a child that really needs one. Anyway, those are the ideas I have come up with so far to maybe, hopefully get myself out of my own head and feeling sorry for myself. Wish me luck please!
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Oh! And I am extremely
Oh! And I am extremely grateful to not be where I was just last Friday! In so much pain, I went to the emergency room doubled over and basically having a panic attack. Found out from my surgeon at my follow up this week that was the nerve that runs along the bottom rib from where they clamped my liver up. Um, yuck. He said no one has ever complained of pain there, but he is certain that is what had caused. I am so lucky, ha ha!
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You've come to the right place
This is where you can dump a lot of your feelings without judgement in return. What you are experiencing is absolutely and completely normal for what you have been through. Iceman and Fox have said it very well. Kind of when you train to run a marathon, you can usually at least run it. No one trains to have major surgery, and when they do have it, it can hurt like H. and last for a while. It also affects the rest of the systems in your body-like taking a deep breath, digestion, stress levels, emotions, and endurance. You returned to home based work in 2 weeks; I couldn't even walk to or ride in a car by then.
I''m also not ashamed to admit that I'm on anti-depressants and at one time, saw a counselor. The one BIG thing she helped me understand was that I'm a bit of a Type A person-like to have a plan, execute it properly and get on with things. In other words, like to know there is control in the process. With Cancer, you have NO control...over it's progress, what has to be done to get rid of it, your recovery or even how fast you recover. It's human nature, and none of us want to "say Uncle." We keep fighting.
This board can be a great resource. If you click on a user name, like you are mlph4021, you will get to the user id's bio info. I didn't join this board until 5 years and 3 surgeries after Dx. You can read other survivor stories and find out the treatments they've been through, how specific drugs have affected them, and how they've dealt with a lot of the extra baggage that comes with cancer.
Be easy on yourself; you don''t want to burn out trying to do too much too fast.
Hugs and best wishes,
donna_lee
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You remind me of someone I
You remind me of someone I used to know, know? Let me think! Oh, that's me 28 months ago. I was 36 years old, and just like you I had a 10 cm tumor in my right kidney which was removed 28 months ago. I just had my recent C.T scans with clear report.
The news almost killed me emotinally, I couldn't believe I would laught again, I didn't think I would enjoy the next new year, I was lost in tears, but here I am, 2 years post surgery filled with hope, happiness, long term goals and let me say once more hope.
It take a while, for me it took almost seven months to finally accept I needed help, I saw a therapist and it greatly help me finding hope,i also didn't talk about my emotions even with my hubby just because I didn't want to hurt them but it was a bad idea, since I've opened up it became easier to cope with new life. This board helped me a lot, you can also use other's experiences, we 've all been through it, so keep us posted, we are willing to help. I'm sure you need time to cope with this "C" world. It's not easy but it's still manageable. Time will help and you'll smile again.
Wish you the best
Forough
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YES! I am a planner! I makedonna_lee said:You've come to the right place
This is where you can dump a lot of your feelings without judgement in return. What you are experiencing is absolutely and completely normal for what you have been through. Iceman and Fox have said it very well. Kind of when you train to run a marathon, you can usually at least run it. No one trains to have major surgery, and when they do have it, it can hurt like H. and last for a while. It also affects the rest of the systems in your body-like taking a deep breath, digestion, stress levels, emotions, and endurance. You returned to home based work in 2 weeks; I couldn't even walk to or ride in a car by then.
I''m also not ashamed to admit that I'm on anti-depressants and at one time, saw a counselor. The one BIG thing she helped me understand was that I'm a bit of a Type A person-like to have a plan, execute it properly and get on with things. In other words, like to know there is control in the process. With Cancer, you have NO control...over it's progress, what has to be done to get rid of it, your recovery or even how fast you recover. It's human nature, and none of us want to "say Uncle." We keep fighting.
This board can be a great resource. If you click on a user name, like you are mlph4021, you will get to the user id's bio info. I didn't join this board until 5 years and 3 surgeries after Dx. You can read other survivor stories and find out the treatments they've been through, how specific drugs have affected them, and how they've dealt with a lot of the extra baggage that comes with cancer.
Be easy on yourself; you don''t want to burn out trying to do too much too fast.
Hugs and best wishes,
donna_lee
YES! I am a planner! I make lists, I anticipate all the possible outcomes, I come prepared! I even took my own pillows and blankets to the hospital for surgery! And if I am not 10 minutes early, I might as well be late. The total and complete loss of my sense of control is nearly paralyzing.
I am considering getting some sort of counselor, but I may need to get a little bit stronger before I even do that. Otherwise it might just be me sitting there blubbering for an hour with them unable to even understand the words I am saying.
I am not sure if makes a difference, but even with the tumor as big as it was, my surgeon performed a hand assisted laparascopic surgery. I have one incision below my belly button that is about 5 inches long and then 4 smaller holes all over my abdomen for the tools. Perhaps that is why I am physically recovering what seems quickly? I started driving again this Monday too, I figured it was a week and two days and I was nearly off painkillers, only taking a half of one twice a day. And the entire round trip was 1.25 miles, LOL. After I did it, I thought maybe I shouldn't have but he told me it was fine.
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Thank you! I am happy to hearforoughsh said:You remind me of someone I
You remind me of someone I used to know, know? Let me think! Oh, that's me 28 months ago. I was 36 years old, and just like you I had a 10 cm tumor in my right kidney which was removed 28 months ago. I just had my recent C.T scans with clear report.
The news almost killed me emotinally, I couldn't believe I would laught again, I didn't think I would enjoy the next new year, I was lost in tears, but here I am, 2 years post surgery filled with hope, happiness, long term goals and let me say once more hope.
It take a while, for me it took almost seven months to finally accept I needed help, I saw a therapist and it greatly help me finding hope,i also didn't talk about my emotions even with my hubby just because I didn't want to hurt them but it was a bad idea, since I've opened up it became easier to cope with new life. This board helped me a lot, you can also use other's experiences, we 've all been through it, so keep us posted, we are willing to help. I'm sure you need time to cope with this "C" world. It's not easy but it's still manageable. Time will help and you'll smile again.
Wish you the best
Forough
Thank you! I am happy to hear your CT was clear. I go for my first post surgery scan in 6 months. Nervous already, LOL
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Welcome MLPH
What you're going thru is completely normal, it's a lot to digest and come to terms with. Have your pity party, let it out, find a name for that beast that was removed. As soon as my doctor gave me my own 3 x 4 glossy copy of my kidney & the beast I was quick to refer to it from that point on as "Bob the Blob".
Us type A people are always busy taking care of everybody else and going, going, going and put ourselves on the back burner. This is your time for you. I kind of thought of it as my body's way of saying, slow the F*** down, what's the rush? It's actually been somewhat freeing, who the hell am I trying to impress?
I didn't find this site until I was 2+ years post-op and I also did a couple of visits with a therapist. It all helped. I needed contact with others that can directly identify. Family & friends just don't get it.
Donna~
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I'm so sorry you have to be
I'm so sorry you have to be here but you can't find a better bunch of people who do know exactly what you're going through. It's devastating to be told you have cancer and then have the whole surgery and recovery thing to see through. The anxiety, the depression, the guilt, yes, BTDT and I think most if not all of us have. It took me a long time and the people here to get back to "normal", whatever that is, lol. It'll be three years in March from my partial neph but I still have periods of anxiety, panic, depression, the whole "why me" thing, which of course makes me feel worse because so many others do have it worse. But I think it's human to feel sorry for ourselves and honestly, I think we're entitled to periodically think "what a sucky thing to have happen to me." It's good to be positive and think optimistically but when those dark thoughts hit us, well, we have to deal with them too. It does get better and you're only two weeks out so give yourself a chance and don't rush thing either physically or mentally. All the best to you and we're here whenever you need to talk. Hugs!
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Ditto as to what's been said already
You've been hit pretty hard ... not only having the "C" word sprung on you, but to have gone through a very serious surgery. My tumor was larger than yours and the surgery was more invasive. But, mine was close enough to yours to offer some encouragement. As has been said upteen times, it is a slow recovery. You are pushing it because you have the will power to do so. Listen to your body, though. Try to cut back a little. Your recovery is a three-step-forward and one-step-back sort of thing. Things will seem to be progressing, and then you'll have a new pain to wonder about. Overall, it WILL get better. Really. Mentally and emotionally, it'll get better, too. Not perfect and not like before the cancer. But, it will be better for you. Plan on some people being able to understand your experience (and how it continues to affect you) and some people will just not get it. Rely on your oncologist and go through the follow up. Your recovery can be tracked in ways not even thought about a decade or two ago.
Best wishes for you.
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Whoa there!mlph4021 said:Ha ha, thank you all. I am
Ha ha, thank you all. I am sitting here crying as I read and then type. As far as work goes, like I said, I work from home. My job can get a little nuts mentally, but I go crazy not working. Before my second daughter was born, I went and bought enough paint to paint the entire interior of our house while I was on materinity leave. I started painting the day after we came home from the hospital, every time she slept. I am a little high strung I guess you could say.
I have 2 hours left of work to go today, and I can at least say I am looking forward to the weekend, if only to not have to set an alarm, so I suppose some "normal" is creeping back in? I may try and walk a mile or two when I am done for the day if I can get one of my kids to tie my tennis shoes (still hurts a little to bend over) but maybe some movement and fresh air would do me some good? I would go do some Christmas shopping but panicked when I was told I was having surgery on Dec. 3rd, so already bought and wrapped everything in case I would be unable to, LOL. And maybe tomorrow I could go get one of those angels off the trees at the mall and buy a gift for a child that really needs one. Anyway, those are the ideas I have come up with so far to maybe, hopefully get myself out of my own head and feeling sorry for myself. Wish me luck please!
You've just had major surgery! Do what you can but dont overdo it. Have you had Physical Therapy? If not, I recommend it. At least you are through the worst of it. Dont worry about the future it will look after itself and the worrying wont change it a bit. You will soon find a new normal.
Welcome and good luck.
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Glad this surgery is over and
Glad this surgery is over and you are now in recovery. Remind yourself you are recovery from major surgery, had lots of drugs viz general anesthesia and before they are completely out of your system, you are adding on pain meds while your insides are trying to heal AND its ONLY 2 weeks!
I wonder if they checked you for anemia, did they? ASk your MD to test you. When you are anemic you are draggin and listless, TIRED!
So do not listen to the recovery-talk of your body but rather, CARE for your body that has been turned inside out so to speak and trying to heal INSIDE and out! Be kind to YOU!
Your body needs NUTRIENTS as inflammation through out your body and onto your brain. Are you eating properly? Skipping meals? Eating or drinking chemicals?
Learn to relax every muscle of your body and do centered, mindful breathing to achieve a more serene, peaceful state.
And lastly WE are here for you! Best thing you did today was write to us!
I am here for you.. all.. the... way!
Sending you healing energy and a gentle hug,
Jan
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Welcome to our group. I am
Welcome to our group. I am glad your husband advised you to find a place like this. You have been through a lot, but please look after your body's needs. Once that has had a chance to heal, the rest will follow. Also, I wonder if the Hashimotos disease might have a small part in the emotional end of things? I am not downplaying what you have been through - it is a major event! - but see if your hormones are on level. I had a 13 cm tumor removed via laprascopy 3 years ago this month. I was stage 3 with lymphovascular invasion...and so far, all has been fantastic. As time goes on, the anxieties and worries lessen. And as others have said....worrying doesn't change the outcome.
So please slow down- even for a few weeks. Take care of your body, let it heal. You can do this!!
Hugs
Jojo
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Sorry you are here
All of us have had the same suprise. I am impressed that you are back at work -- I ended up being out for 9 weeks, (but my wound got infected at about 4 weeks).
I can not say when things will return to normal. For me, I still have pain at 4.5 years. Not bad usually, but not a day goes by without feeling it. It reminds me I am lucky to be alive.
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Sorry you are here
All of us have had the same suprise. I am impressed that you are back at work -- I ended up being out for 9 weeks, (but my wound got infected at about 4 weeks).
I can not say when things will return to normal. For me, I still have pain at 4.5 years. Not bad usually, but not a day goes by without feeling it. It reminds me I am lucky to be alive.
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Wow. Thank you everyone. It
Wow. Thank you everyone. It is nice just to have some people who truly understand how I am feeling. I may be pushing myself a little, but I think I need to in order to feel "normal" again. Honestly though, I was exhausted last night by 6 and went to bed.
Going to go out to lunch today and I think I will do a little shopping and maybe some napping. I guess I am fortunate I don't have little kids anymore, my girls are old enough to make themselves a frozen pizza when they are hungry and mom is asleep. Wish they would teach daddy, LOL. 0
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