Need advice

2 years 11 months ago - 2 years 11 months ago #60209 by mikequestions
Replied by mikequestions on topic Need advice

I think most men are like your boyfriend. I can say that, because I'm a man. ;)
It's great that you support him like you do. He's lucky.

I'm not sure I could go through this by myself. My wife is very supportive, and she holds me up when I can't do it for myself, which I'll admit, is frequent.
I'm trying to look at this problem from all angles; mental and physical. One thing is for certain with this disease - You're going to deal with it whether you're ready or not - whether you want to or not. I'm finding that I have very little control of my stress reaction and emotional response to my situation - In fact, other than showing up for BCG treatments, trying to eat better, and exercising, I have absolutely zero control over anything that is happening to me. So, I focus on the stuff I can control, try not to stress about the stuff I can't, and hope like hell I get through this alive.
The following user(s) said Thank You: RosieF

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2 years 11 months ago #60205 by RosieF
Replied by RosieF on topic Need advice
I'm impressed by the posts in this thread. with me, it is my boyfriend who has the diagnosis. Just got it confirmed within the week, ,T1 Aggressive grade.
I get so scared for him. He doesn't handle emotions very well. Or stress. And it just so happens, right now there are a number of external stressful things happening.
I don't know what to do except surround him with light as much as I can. But I really, really feel it when he suffers, even if he isn't able to express it very well.
We've found a good doctor, we are just now waiting for the appointment with him. I'm the one doing all the reading and research but I don't mind.
I guess I have to trust that whatever he will learn, he will learn. Me too. It's hard to go through something like this with someone when so much is beyond my control.

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3 years 2 weeks ago #60156 by mikequestions
Replied by mikequestions on topic Need advice
Hi everyone,
I just want to post an update of my current condition. As I mentioned previously, I had my 2nd TURBT, and all has been going pretty well with recovery, but I want to you know about specifics in case you're also going through this.

I've found that in general, the pain was much less with the second surgery, which was about 6 weeks ago. I've found that scabs still continue to come off and show up in my urine. Previous to this, I usually feel a little pain at the end of urination, and I'm assuming this is due to nerve endings being exposed as the scabs work loose. This pain usually resolves in a couple days, and has decreased with time.

I've found that spicy food (which I love) is not working out for me, and that I feel pain sometimes because of it. For this reason, I'm now going relatively bland with my cuisine (yuck).

I've pretty much eliminated alcohol from my diet since this diagnosis - not because my urologist recommended it, but simply because I figured I didn't need to tax my already taxed system. I'm not an alcoholic, but previous to this, I enjoyed a drink on some evenings. I'm wondering if you all have continued alcohol consumption during treatment, and if so, if you've had any negative affects from it.

My first BCG treatment is scheduled for next week.

Mentally, I'm still freaked out, but dealing with it better now. I'm typically very active with work and other activities, and have had to cut way back on this since the diagnosis. I've found that my body tells me what to do. I'm definitely not in the driver's seat, my bladder is. I'm able to walk 1-2 miles a day, but can't really do anything strenuous. I'm just now (within the last couple weeks) able to do some minor chores which involve bending, lifting, etc... I want to emphasize "minor".

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3 years 1 month ago #60009 by Alan
Replied by Alan on topic Need advice

The good news is that when the treatments are over.....and you are already past what is usually the worst part, you will come out stronger and more effective in your life. It is purely taking it one day at a time.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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3 years 1 month ago #60008 by mikequestions
Replied by mikequestions on topic Need advice

Hi Sara Anne,

Thanks for your thoughts.

Regarding "Talking about it", I'd like to clarify that I'm generally pretty introverted. I'm not the social media type, at all. I despise the hateful rants that are often associated with Facebook and Twitter, and would never think of going public with my cancer information on such a platform. If I wasn't relatively confident of the anonymity in posting here, I wouldn't do it. Also, I'm not confident my clientele and work associates would be judgement-free, so I'm careful about who I share private information with. It's a cruel world in many respects.

Looking deeper in to the concept of social media - Perhaps you could say that I'm too proud to receive sympathy from everyone I know. That, or maybe I'd just rather receive emotional support from people I know I can trust. Whatever. I obviously have found some useful information and support from this forum, and you. I didn't know I needed it until I started reading many of the accounts of personal struggles here. This is why I decided to share mine. Maybe somebody else can glean something useful from my experience. I hope so. I hope I can pay it forward. It's what makes us uniquely human.

Pandemic. Political strife. Cancer. It's a horrible year. It's also one of the most enlightening times of my life - A time of new awareness and hope. We so much need to learn to be better people. I'm learning.
The physical part of this is the easy part.

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3 years 1 month ago #60007 by sara.anne
Replied by sara.anne on topic Need advice
So glad to hear the results, Mike.

Everyone handles such a diagnosis differently. Some patients do not want to talk about it AT ALL. Others find it an opportunity, as you did, to reach out in love to those close to them. I think that is the best approach rather than hold it all in where it becomes a worrisome poison. When I was diagnosed I knew very little about bladder cancer (used to joke that I didn't even know I had one!) Felt that by sharing my experience perhaps others would recognize the symptoms and get treatment earlier.

Emotionally, it was difficult. When both my urologist and primary care told me that they "thought" I was depressed and perhaps needed treatment, I became very angry. Told myself (and them) that I had every right to be was a natural reaction, thank you very much...

Now 12 years later I am still cancer-free. You can do this too!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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