Pre Cysto apprehension

16 years 11 months ago #4858 by timb
Replied by timb on topic Pre Cysto apprehension
John
A lot of what you said I can absoloutely relate to. I had peeks and pokes for 14 years and had many little tumours growing in my bladder during this time. I think 30 or 40 probably but I stopped counting some time ago. I never fully got used to the regular cystoscopies, my life went on hold in the weeks leading up to them, I became unbearably dark and moody at work and was always aware that my future happiness pivoted around that date with the urologist. I became incapable of planning more than 6 monthds into the future and kind of used it as anexcuse to put things off. I was always freaking out about the prospect of my bladder being removed. Now it has been and I have found the strength to just deal with it. In a weird way its been easier for me than all the peeking and poking (not that Im suggesting you get your bladder removed!; there's loads of good reasons to keep it as long as you can, but like most things the reality has not been as monstrous as the anticipation - I'll bet your cystos are not as bad as what you have running around your head).

I think also the BCG can eat away at your resolve. It's useful but its not a nice drug and Ive only realised since coming off it how mentally and physically exhausting I found it. Sometimes when you're in the middle of the problem its hard to see properly what's going on.

I also think, though it may not seem like it right now, that there's actually a hell of a lot you can do to take some control of the situation. In your head you are at the mercy of the diagnosis and there's nothing you can do to change it. So change what you can change; Wendy's therapist suggestion is excellent. It'll be really good for you to talk to someone about this. Nurition is really important too. Particularly while you are doing the BCG. Eat lots of nice fresh real foods; vegetables and fruits and seeds. Don't go crazy but take a good multivitamin to bolster your immune system (green tea extract is a good one for helping BCG; tests at UCLA have demonstrated this). Fill your mind full of nice experiences; go for beautiful walks, treat youself - don't let cancer be the dominant feature of your life all the time - it will be some of the time but why not grant yourself a day off or two? Its really ok to do that. It's not being irresponsible. It's about giving yourself the edge and giving yourself a break.

You take care of yourself

Tim

Please Log in or Create an account to join the conversation.

16 years 11 months ago #4825 by wendy
Replied by wendy on topic Pre Cysto apprehension
I'm sorry to read that you suffer so much...it sounds like you may even be having post-traumatic stress syndrome. I'm sure it's a lot more prevalent among the cancer population that we realize. Cancer is a traumatic diagnosis, and ongoing treatments, the worry of recurrence, the twinges that we project to be metastasis, it's not so unusual to have these fears. Cancer is a huge burden but you are not alone.

If I were you I'd do what I could to find a decent therapist, one with the ability to prescribe medication if need be. Don't let yourself sink into the deep dark pit of depression. I've been there and it's worse than anything else I've ever been through. I used antidepressants for 5 yrs and had therapy for the last 2 or so years of that. Last year I began doing something new, drawing and painting and soon after that I felt so much better I terminated the therapy. I've been off the antidepressants since 2004. If you have questions on that subject please ask, I'm sure many of the folks passing through here can chime in on the subject.

One thing my therapist said to me during the times I'd be fatalistic about my cancer diagnosis is, "if the sun were shining, would you sit there waiting for it to rain?" and of course I had to say, "no, that's totally stupid." Worrying is not a good coping mechanism because it's almost always worrying about something that probably won't even happen, and we are projecting our fears onto the future. It's futile.

Cancer is a life changing event and nothing will ever be the same. Believe it not, people get used to anything and eventually adjust. It's natural to have the anxiety you describe, but nobody can live like that for too long, so if it doesn't ease up get professional help.

In the meantime, feel free to vent here!
All the best,
Wendy

Please Log in or Create an account to join the conversation.

16 years 11 months ago #4811 by skypilot
Replied by skypilot on topic Pre Cysto apprehension
Hi John I do not worry as much as you, I do dread having the scope more so when they have to get by my inlaged prostate BPH. I am on 3 month checks since Nov clearance from High grade insitu. But I do not dwell on this stuff as you do. I do have this one recuring place of discomfort on my left side of blader since last turb, But doc has looked at me and said no problem. So when I feel it I say no problem but still have concerns. Try not to worry so much life will be beter. Don

Hanging in there!

Please Log in or Create an account to join the conversation.

16 years 11 months ago #4810 by wood108
Pre Cysto apprehension was created by wood108
Hi all,

I am scheduled for my second 3-month cysto after last summers BCG treatment.  I had my first Turb done in Feb 05 with a second done last July.  Both times the tumors were superficial Ta.  Everything I have been told and read indicates that while this will require lifelong monitoring, it is highly treatable disease with a low chance of advancing.  While normally I'm a very upbeat, optomistic individual, that  seems to change 7-10 days prior to my appointment.  I start to feel more twinges and aches in my body and my brain starts to think the worst.  Rather then a sore muscle from a workout, my ache becomes the possibility of metasticized cancer elsewhere in my body.  As my appointment gets closer, I start thinking about the Doctor using the Cystoscope and the dread of having it inserted in.  I fear that as I watch the screen and see the scope enter the bladder, there will be a few more tumors lining the walls.  It's like going to  a horror movie and knowing that something scarier is going to happen.

I never really had these feelings prior to my BCG, but I think that is because of how quickly I was originally diagnosed and treated.  I went to my GP for blood in my urine on a Friday, 45 minutes later I was in the Urologist office thanks to a cancellation and the Dr was showing me the tumor on the screen.  I felt like I was hit by a truck.  I went into the Hospital the following Monday morning and was back home in the afternoon.  It all happened so quick, that I don't think it ever fully sunk in that I have Bladder Cancer.  During the following year an a half, with each negative Cysto, my defense mechanism of convicing myself that nothing really happend was just reaffirmed.  The scopes, while certianly not fun, were bearable and never much of a worry.

Then came the poke-and-peek that showed 5 more tumors. The shock and disbelief made it feel like I was hit by a ton of bricks more so then my original diagnosis.  I had myself conviced that I never had cancer, and here was my Dr showing me that it is back.   I had my 6 BCG treatments and now I'm back to the 3 month checkups.  

Leading up to my next appointment, I start worrying about another painful Cysto.  I worrying about the cancer coming back.  I worrying about the cancer spreading.  I worry about having my bladder removed.  I worry about how that would affect my physical relations with my wife.  I worry about what two daughters will do without me.....and the list goes on.  I know these thoughts are borderline irrational but they are lurking in the back of my mind and work their way up front as my appointment draws closer.  

I so look forward to the end of my appointment when I can breath a sign of relief and laugh at how stupid I can be for worring so much.

I was just wonder if anyone else out there has goes through similar things and if you have any advice that I can use.

Thanks,
JohnW



Please Log in or Create an account to join the conversation.

Moderators: Cynthiaeddieksara.anne