Going in for cancer surgery tomorrow - bladder

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Gullible

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May 15, 2011
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Had my second dose of chemo last week. I felt nausea all this week, glad its my week off. They give you 2 weeks on then one week to recover, then 2 weeks etc. I've noticed I'm shedding a lot more hair than usual in the shower so I guess that lovely side effect is hitting too. They give you a drug for nausea but it has lots of side effects so need a pill for those side effects too then one for that pill etc. I'm trying the potassium ascorbate that may be the miracle cure

But I can't complain too much, you just look around a little bit and see people worse off, some much worse off. Chemo is a pain but having failing kidneys means you have to go in every week for the rest of your life, not just for a couple months or so. Some have to go in 2 or 3 times a week with little to no hope of recovery just gradually getting worse. I at least have a chance of beating this. And we all know of some who live with life long pain and medications failing them if they can even get the meds.

So I'm just going to finish this course of icky medicine and go out and have fun. I will visit places I haven't been in many years and some new ones. I will try to make new friends and go see the ones I already have. I will try a lot of new things
 

calgal99

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Had my second dose of chemo last week. I felt nausea all this week, glad its my week off. They give you 2 weeks on then one week to recover, then 2 weeks etc. I've noticed I'm shedding a lot more hair than usual in the shower so I guess that lovely side effect is hitting too. They give you a drug for nausea but it has lots of side effects so need a pill for those side effects too then one for that pill etc. I'm trying the potassium ascorbate that may be the miracle cure

But I can't complain too much, you just look around a little bit and see people worse off, some much worse off. Chemo is a pain but having failing kidneys means you have to go in every week for the rest of your life, not just for a couple months or so. Some have to go in 2 or 3 times a week with little to no hope of recovery just gradually getting worse. I at least have a chance of beating this. And we all know of some who live with life long pain and medications failing them if they can even get the meds.

So I'm just going to finish this course of icky medicine and go out and have fun. I will visit places I haven't been in many years and some new ones. I will try to make new friends and go see the ones I already have. I will try a lot of new things

Hey, @Gullible. I am also sad that you are having to deal with all of your medical issues, but I wanted you to know that I am very happy every time I see one of your posts, and I am in awe of your perspective of your situation. I think we mostly agree that a positive attitude can only help with what hurts us, but you are a very special person, and your attitude is remarkable. I hold you in my thoughts and hope that you will come out on the other side of this in better circumstances. Peace.
 

Seychelle

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Hey, @Gullible. I am also sad that you are having to deal with all of your medical issues, but I wanted you to know that I am very happy every time I see one of your posts, and I am in awe of your perspective of your situation. I think we mostly agree that a positive attitude can only help with what hurts us, but you are a very special person, and your attitude is remarkable. I hold you in my thoughts and hope that you will come out on the other side of this in better circumstances. Peace.

Same here @Gullible,
Aquiring inspiration from your very positive posts:)
 

Marcone

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May 27, 2020
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It's really important to consider 2nd, 3rd, and even 4th opinion when dealing with something that you feel is very wrong. We can feel that instinctively in our body so if money is available, we should really consider going to the best doctors.
 

cupeater

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Mar 15, 2020
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I take L-Lysine supplements for my mouth when I bite my lip or my tongue to heal quicker. My Dad found out he had bladder cancer several years ago and he's had to go through a few rounds of immunotherapy and so far we've been really lucky and he's beaten it each time. I got him to take L-Lysine and it seems to help him recover faster from biposies. I also brought it up with his Urologist and she was a little annoyed that he hadn't fully read all the literature she gave him because apparently it suggested to start using that supplement. It's cheap and definitely worth asking your doc about.

I am impressed pretty much every time I take it, because it really does seem to make wounds heal faster.
 
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Gullible

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I did do imunotherapy after my first bout of cancer. Took the bcg tuberculosis treatments for over a year but then it came back the next year. I spoke to several doctors before deciding on the surgery and did extensive reading.

Considering the constant roadblocks the hospital put up forcing the operation further back, maybe I should have gone elsewhere but this doc had lots of robot surgery experience so I went with him. But then it turned out to be too late and the cancer had started to escape so now we will see if chemo mops it all up. The nausea is still there but they gave me a new prescription with perhaps less sides.

I'm not going to worry about it, we all go to a better place when we die. Our choices make a big difference in how long we linger here but in the end what is going to happen will happen. This has at least woken me up from the slumber of work, make money, save, repeat. Now my job is to get over this and have more fun. By the time I'm done with chemo hopefully the virus panic will be over. The death rate from that is low and only hits mostly those with pre-existing conditions and who are old. Wait, thats me! but I still am not worried about it.

Moral of the story is having fun is an important part of life that sometimes we neglect. We need to build friendships and maintain them or they drift away. So many people I knew are gone so I go out and meet new ones. I will be traveling later this summer and hope to go abroad in the fall. Any suggestions on fun things to do? Maybe an amusement park I haven't been to, maybe a trip to vegas, maybe a bunch of things
 

notcharlotte

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you have such a good attitude, @Gullible. i'm sure you made the best decisions you could at the time. now it's time for fun! treat yourself and be healthy enough to enjoy it. we always put off good things for later, but now it's later.

i hope the nausea gets better. there's nothing i hate more than feeling nauseous. hope hurricane season leaves you alone too!
 

Gullible

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I just got a statement from my insurance company on the total cost. The doctors, tecs, hospitals, etc all charged a total of just over $300,000. My insurance company "allowed" some $35,000 meaning thats all they get. The doctors, hospitals etc said 'fine ok'. I wonder if we would get such a break if we didn't have insurance or it wasn't covered? I doubt it, they would want a bunch up front maybe the whole thing. If they make money at 35k why did they ask nearly 10x as much?

This is my week off from chemo, I can hardly wait for it to be over but have 4 more to go. Still feeling nausea despite the drugs to combat it. Could be worse. I believe much of my good mood derives from the tens unit tickling my vagus system. I wrote about it in another section. Right ear for lowered blood pressure and left ear for mood. It helps a lot
 

rainey51

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@Gullible - You're okay ! Yay! I was scared. I jumped to the most recent post you wrote and will read the rest of this thread later but I'm so glad you're okay :)
 

Gullible

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They put me on a different chemo drug because the last one was so harsh on me. I was nauseous all the time. I was told at the beginning they might do that. So its a little less harsh, I still get some nausea but don't feel as sick all the time.

I was anemic and low white blood cell count so they gave me some shots. The shots gave me backaches which usually wake me in the morning but it should be wearing off soon I hope. Its been 6 days since the last one. One drug to fix the other drug but then need a pill for that drug. No end to the side effects.

The cat scan I had a couple weeks ago came out clean which is a good sign but no guarantee of anything. I skipped chemo this week because of the shots but will go back to it next week. I have 3 to go and will be happy when its over. I have not felt sick nor had any pain directly from the cancer, only from the treatments.

I will get another cat scan in oct and then one each 6 months for a while then once a year they say. The scan only can see when there is a tumor of large enough size. A clump of 100 cancer cells could easily slip by. They removed the tumor with the bladder and now its mopping up the loose cells which escaped before surgery. They were found in some lymph nodes so chemo was obligatory. Beat the enemy while its weak, don't give it a chance to regroup.

I hope to travel and do some fun things. Who knows, maybe this virus panic will be over some day and we can live a normal life? One can hope
 

Admin

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Hope the chemo is not too awful @Gullible. Sounds like you've had a very tough journey. Always glad to see you on here. Best wishes for a quick and thorough recovery.
 

spraypaint33

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Sending healing thoughts your way and strength in your fight--cancer is a horrible disease, but you can beat this! All the best in your battle and recovery.
 

Gullible

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Thanks everyone for the well wishes. I have one more chemo session this coming wednesday and they say that is the last one. I even thought I had to do 2 more but they say just one. I am actually very glad about that.

Symptoms I get from the chemo:

backache
muscle aches
nausea
brain fog
poor memory
constipation
hair falling out
ringing in ears
low energy

So as you may have guessed, its not much fun. Neither is it fun to go in and sit from 3 to 6 hours while they drip the stuff into your vein. Luckily the latest mix they are giving me only takes about 3 hours and there is less nausea but still a good bit and everything else. Also the backache and muscle aches seem more now. It sometimes wakes me at night and can't get back to sleep.

OK, no more complaining, it could easily be worse so I should count my lucky stars. If I had not gone in the moment I saw blood in urine in january, it would be too late by now I'm sure. This time it was super fast moving and the system will not speed up for you no matter what. Gotta have rules you know. From that early warning it had already started to spread within the bladder and by the time the creaky medical establishment let me have the operation, it had gone beyond and started to emerge. That is fast.

Many people delay when they have symptoms. I knew a guy who thought he had ulcers because he had pain in the belly for a long time. It got too bad and finally went to the doctor and it was way too late. Cancer had spread all over, to all major organs. If he had gone in right away he might still be kicking around

Don't worry that the doctor will think you are a hypochondriac. Better a few false alarms than to ignore the real alarm.

Anyway, I think I will make it. I have another cat scan in oct and then every 6 months for a year or so then once a year until 5 years have passed. So I think I will be fine.

I still have hopes of traveling and having fun if the politicians ever quit locking us down. Latest I heard was fauci wants us now to wear goggles in addition to masks and maybe a face guard too. I won't do it.
 

karuna

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Oct 24, 2014
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@Gullible
Now you are done with the chemo and the awful side effects, I know every week you will feel stronger. I know you know this, but I am reminding both of us, I guess, to listen to whatever your body is telling you— if it says rest, rest. Sleep, sleep. Dance, dance. I’m hoping soon the side effects will be less and you can actually get out and feel strong enough to have some fun.

Hope you remain healthy and you reach that 5 year mark!

Take care of yourself and I hope you remain well and feel better.
 

Gullible

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@karuna, thanks very much. I just finished the last course of chemo wednesday 3 days ago. Still dealing with the side effects of that, some nausea and all the other stuff. But I will be over the nausea in a week and in a month hopefully all the other things will have gone away or at least be better

I do expect to have more energy in a month, less aches and pains. I really hope the brain fog has gone away by then. Who was it, groucho marx who said "of all the things I lost I miss my mind the most". It will be nice to be able to remember things again. From the past I remember but what I just did or plan to do next, that might slip through the cracks.

It will be a few months before my hair starts growing back probably. Hopefully it at least stops falling out. Its annoying to take a shower and have hair all over your face afterward. They assure me these side effects will go away.

I am more vulnerable to infection now because the treatment knocked down my white blood cells a lot. It went so low they gave me shots for that and it came back up some but still was low. Also red blood cells and hemoglobin are low. Its like the drugs have 10 effects and only one of them is what you want so you have to put up with all the other junk

They are going to do labs again, I have an appt in sept to see how my recovery is doing. If the numbers aren't too bad maybe they will leave me alone after that. But there will be more cat scans and in 5 years I'm pronounced cured if nothing shows up. If it does then more chemo I guess (shudder)
 

Gullible

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It has now been about a month since the last chemo treatment. The nausea has gone away and I don't feel sick all the time but other things remain. One day constipation and the next day the opposite. I use magnesium on the days its not moving. My hair is still falling out, good news is it has to stop eventually because at some point there will be none left to fall.

I'm still foggy and forgetful. I'm really tired of being a space cadet all the time forgetting things. I remember what happened 40 years ago but what I'm supposed to do next is hard. I have to keep reminding myself to do things. I think that has gotten a little better

The ones I feel sorry for are those who have to go through all that, surgery, chemo, etc and also hold down a full time job. I couldn't do it, a younger person might be able to but its really hard. Not too many have 3 or 4 months of sick leave and vacation time stored up so they work to keep a roof overhead and food on the table even though they don't even want to get up and move let alone work.

The worst type of job to have to do while sick would be physical labor such as construction. Chemo and after effects of surgery take away your energy and strength and also make you dizzy and clumsy. Can you see someone working on a roof or tall building who is dizzy and stumbling all the time?

A desk job would be doable but then poor memory means they will muck things up a lot. Do they quit the job before getting fired or quit the chemo and risk a reoccurrence? Some will have to make that choice. And then what about those who manage to get through the day, come home and have to take care of kids when they just want to collapse for a week to rest up.

So I try to count my blessings because it could have been worse.
 

Lifeliver

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Sep 2, 2016
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@Gullible i got my FIL a book which he loved. Maybe you would, too. It’s called, “the funny thing about bladder cancer” by Guy Wheatley.
I’ll be praying for you.
 
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