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Just got here...

16 Jul 2017 16:31

Hello.  I just got here.  Found out a few days ago I have bladder cancer after a trip to the Emergency Room when I started peeing blood.  Yuck, I know.  Anyway, I'm meeting with an oncologist Tuesday afternoon to find out what it all means.  I don't know any of the fancy terms I see some of you using here, but suppose I will learn them quick enough.  Of all the things I'm worried about, is how I don't feel sick at all now that the doctor stopped the bleeding, but once I start chemo, they tell me I will start feeling really sick.  Hmmm, is this true?  Is the "cure worse than the disease" in some respects?  Dumb question, huh?  Of course I'll get the treatments, just thinking out loud...

Re: Just got here...

16 Jul 2017 17:11 in response to Brenda101

Hi Brenda,

Welcome to the forum!

The first few weeks after diagnosis are the worst ones where you're trying to take onboard everything you've been told and nothing really feels real. Don't be afraid to ask any questions no matter how hard or silly they may seem.

Chemo can have some lousy side effects, but they are usually short term, but the main side effect of not having treatment is usually pretty permanent! 

You'll soon get the hang of the jargon and the silly acronyms people use. Sometimes the number of TLAs (Three Letter Acronyms) makes posts and letters look like alphabet soup! 

Best wishes

Dave

Re: Just got here...

17 Jul 2017 00:53 in response to davek

Thanks Dave!  Is it strange that I'm not devastated by this diagnosis?  At least not yet?  My Dad and sister keep trying to offer me "sympathies" and telling me it is OK to cry or whatever, but I'm not even close to feeling like crying, or even being really mad or upset.  I'm honestly not in denial or anything like that.  I just want to get on with it, start my treatment(s) and move on and continue living my life.  They are way more "devastated" than me, by far.  I hate how they keep looking at me now.  For that very reason, I'm not telling many people.  Just those I'm closest to, and additionally why I'm posting rather anonymously on this forum.  Other forums I checked out, people were using their real first and last names, and I did not want to go there.  Maybe I'm just weird, huh?  LOL!  OK.  Thanks again for your response!  Talk to you later I hope!

Re: Just got here...

17 Jul 2017 06:57 in response to Brenda101

I get what you're saying. I'm awaiting biopsy results and feeling weirdly philosophical about it at the moment. My thoughts have also run along the is treatment worse than the disease even when logic tells me that the circumstances in which that would be true are few. So I don't think it's a dumb question. I have also thought about it from the opposite perspective too ... under what circumstances would i want the treatment to be as major as possible, such as a double mastectomy, to reduce the future risk to as low as current medical knowledge allows. I suspect though that, unlike you, I will be devastated if the diagnosis is cancer. Just wanted you to know that you're not the only one wondering these things. Hope you can stay so positive, as I'm sure that will help you get through it.

Re: Just got here...

17 Jul 2017 08:13 in response to Brenda101

Hello Brenda My husband is getting chemo and the nurse told him not to listen to people who say that he will feel sick -not true any more, just a scare story. He has been  given anti- nausea tablets to take 3 times a day - hasn't felt sick at all just a bit drowsy like after travel sickness pills.  You'll be ok if you take them as prescribed. Also don't listen to 'treatment is worse than the disease' story either. The job of the oncologist is to weigh the benefits against the disadvantages of the treatment. One more tip - ask as many questions as you can , and the 'sillier' the better. They will answer them respectfully. 

Re: Just got here...

17 Jul 2017 08:25 in response to Brenda101

Not weird at all, Brenda. Everyone is different. I also like keep things private. Only I and my wife know in my case. I just don't want to get the sympathetic looks and 'think positive' and 'stay strong' comments. I was very lucky as I had a simple operation to remove the tumour and 5 lymph nodes for checking, with an overnight stay in hospital and that was it, because the lymph nodes were clear. No chemo or radiotherapy required. If I get bad news during the 5 year follow up I will reconsider. And I also think my children, two of whom are grown up, will be entitled to know if there is a serious risk of me nor making it, or if it becomes obvious that I am having treatment for something.  But at the moment I am in great shape, as far as I am aware, my prognosis is very good and I am getting on with my life. There is always a small amount of underlying tension, especially when the date of the next follow up scan approaches, but it is not too bad.

Good luck with your bladder cancer, Brenda. I really hope it is not very invasive, as in my case. I was treated for penile cancer. Before surgery I was told, 'It does not look very invasive, so we should be able to remove an absolute minimum amount of tissue. But we will only know how invasive it is, and how much we have to remove, during the surgery itself.' Fortunately the maximum depth was only 2.2mm. Now, it is only by looking carefully that you can see that tissue has been removed. I was really lucky! I am crossing my fingers that you are lucky too.

Re: Just got here...

17 Jul 2017 13:00 in response to Brenda101

I've been getting some wonderful responses from you all.  Thank you so much!  Not sure if I'm supposed to reply to each post, or if I can "tag" you all in one post like I do on Facebook and Twitter, lol.  I suppose I'll figure all that out too as I go along.  So thanks, HelenSch, Hafohyd and Harry2!

Re: Just got here...

17 Jul 2017 15:00 in response to Brenda101

@Moderator Renata @HelenSch @Hafohyd @Harry2 ‍   Thank you all for your kind responses.  ((Just seeing if this "multiple recipient" thing works!))  Thanks again!

Re: Just got here...

17 Jul 2017 15:13 in response to Brenda101

That reaction may be not be what many people (brought up on TV and film stereotypes) expect, but it isn't all that unusual. Like you, I just wanted to get my treatment started before the cancer had time to get too strong a hold on me. I've spoken to a few people on here who feel pressured into going all weepy and touchy-feely for the sake of their friends and family who perhaps project the way they think they would react onto the person with cancer.

All you can do is say "thanks but no thanks" and explain that you're feeling on top of this at the moment.

We're all individuals and we all deal with bad news and challenges in our own different ways. This is your journey, don't let others tell you how you should feel or act - which I guess is exactly what I've just done lol  Happy  

Cheers

Dave

 

 

Re: Just got here...

17 Jul 2017 18:57 in response to davek

Thanks much, once again.  And on your reply to the "hair loss" post.  Got a nice chuckle out of that one!

Yep, I'm just not the weepy, touchy feely type.  Never have been, and sincerely hope I don't become that way in the future.  Time will tell.

Cheers to you to, and have a great day!

Brenda