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Newly diagnosed please help
Hi
I have recently been diagnosed with stage 2 aggressive bladder cancer.It seems my best option is radical cystectomy with diversion which due tot he position of my tumours will include a hysterectomy and removing my urethra the front wall of my vagina and my ovaries.
I am absolutely scared to death I am 41 and other than a few hours after the birth of my children and out patients appointments to diagnose my cancer I have never been in hospital.The surgery is planned for the 23rd of August and I cant stop crying.I am so worried about the surgery and the impact its going to have on my life my appearance and my relationship with my husband. I accept that I need it but that doesnt stop how I feel I have always looked after my body and have no risk factors for bladder cancer so its a huge shock.The thought that in a weeks time I will be menopausal and weeing out of a hole in my side and all the rest is freeking me out .
I am sorry if I sound dramatic but would so appreciate any advice in dealing with this from people who have been there.
Thank you x -
10 Replies
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Just had a thought
has anyone one had a continent diversion what happens at night?
Do I have to get up every couple of hours to empty it ?
I didnt even think to ask when I had my appointment yesterday they said I would need to empty out
every two hours to start with as the pouch will be small and must not get over stretched.I am useless in the middle of the night and if I am having to wake every two hours will be useless in the day too.
Had an awful day today it feels like one long panic attack I really cannot face whats happening.I know I have to adult about it but feel like a four year old version of me that wants to stamp her feet and have a huge paddy that life is so unfair.
Thanks for all your help the other day
xx -
Clur,
I found the post where I described in detail the very specific technique for deep breathing, and I thought I’d post it here so you could look it up if you wished to do that. It’s located in the Superficial Non-Invasive portion of this site, and the person who started the particular post where it’s located is Whitlo and it’s titled Living with BC. My discription is reply # 8, and there’s also an explanation of where I first learned about this particular technique. I hope it’s of some help to you, as I know it’s been a help to me.
Be easy on yourself,
Lou
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Clur,
Thanks for setting me straight, and I’m so glad you’re comfortable with the care you’ve been receiving. That is a huge part of dealing with your cancer, knowing that what you’re doing is the right thing to do. Wendy’s right about survival mode kicking in, it’s something we’ve all gone through even though we have different levels of disease and treatments. We can’t believe what’s happening to us and then there’s the anger, and to me it sounds like you’re getting into that survival mode because you do know what is about to happen is necessary.
I had a song (I know some people think this is strange) that gave me a great deal of strength and helped me over many a rough spot in my recovery, and I’d like to share it with you as I’ve done so with others. You probably already are familiar with it, it’s by Josh Groban and the song is YOU RAISE ME UP. It’s actually been recorded by numerous other artists, but my favorite is Josh (probably because I heard his version first). I listened to it while I was in the hospital with a portable cd player and ear plugs, and it helped me to shut out some of what was going on in the hospital (the hustle and bustle of medical care). I actually started listening to this song before I ever knew I had bladder cancer after seeing Josh on Oprah where he sang this song, and after hearing it I went and purchased the cd and started listening to it obsessively. That was more than a month before I was diagnosed and at that time I didn’t even have a clue there was anything going on I should worry about.
There’s a particular book I’ve mentioned several times on the WebCafe, although it’s not specifically about bladder cancer I’ve found it to be helpful. The title is, CANCER 50 ESSENTIAL THINGS TO DO by Greg Anderson, it has some great information in it and isn’t necessarily something you have to read start to finish, you can read it bits at a time and still appreciate the information you find there.
Do know that we are thinking of you and will continue to have you in our prayers as you get closer to the day of your procedure, and you will probably do very well during your post-op recovery and beyond (I write that because you mention that you’ve been healthy all your life). I just thought of something you could do to help relieve the stress you’re feeling, and it’s something I’ve described in some previous messages to others. It’s very specific deep breathing, and I won’t describe it again here but if you look back in some previous posts of mine you’ll find where I describe it in detail (it’s not difficult at all). I think you’ll find it helps with some of the panic that you’re feeling.If my arms could reach across the ocean I’d give you a big hug,
Lou Graham
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I just wanted to welcome you to the site and send a cyberhug. I”m glad you are satisfied with the care you’re getting, that’s got to be half the battle, in the end.
I’m sorry to hear you’re having obstruction and need to catheterise, it must make it all quite concrete and scary. Right now just do what you need to do to get through one day at a time, take a sleeping pill if that helps, good.
Sooner or later what I think of as ‘survival mode’ kicks in, it gets easier with time. Being launched into menopause is no fun, I’m sorry for you. But it’s definitely survivable. Having such radical surgery will certainly have an impact but you’ll be amazed at how strong human beings really are, we heal. We adjust, and continue.
The most important thing is to get the cancer out of your body. Aggressive TCC needs aggressive treatment.
I wish you all the best,
Wendy -
I cannot stop thinking about you. I don’t know you but I love you! I would do anything to make you feel better even though I have the same problem. The difference is that I am 59and my surgery is scheduled 5 days later. I spent most of my days crying too; however, when I read your post, I realized that part of survival is understanding and caring about others.
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Thanks for all your replies
In answer to some of your questions and comments
I was diagnosed three and a half weeks ago.I am in the UK but have private health insurance.My own consultant has refered me to a specialist centre and organised a second opinion as a matter of course.I am very happy with the care I am getting and confident in the decisions being made I just hate the decisions.
I have three tumours in my bladder the largest is very low and is starting to grow into the sphincter which is why I cannot keep my own plumbing but they are hoping to do a continent diversion.I know it has to happen as I am uncomfortable and because of the invasion into the sphincter I have had to self catheterise to pass urine for the last ten days which is why the surgery has been brought forward
I feel very angry that this is happening to me which I know is childish.Every morning I wake up feeling that its been all been a dream and someone will say oops its been a big mistake we have you records mixed up.I have been given sleeping tablets which are a god send.
Thanks I am so glad I found this site x -
Clur,
Rosemary’s right about having every right to feel as you do, and many of us have been there that’s for sure. She also asked if you’d had a second opinion, and I want to add to that my question about are you seeing a urologist in a large medical center or teaching hospital? Another question is whether or not your surgeon has performed this particular procedure previously on women?
You also mention that because of the location of your tumor they will have to perform this particular procedure, but let me say that this was what was thought when I was being staged as well. However I ended up with a RC, hysterectomy, and ileal orthotopic neobladder (which means I’m hooked up to my own plumbing -urethra), and I didn’t have any portion of my vagina revised as every other organ removed from my body was negative for cancer (I’m also two days away from being cancer free for 2 1/2 years and I’ve only had surgery-no chemo).
My point in mentioning this is there could be a possibility this might be true for you, but of course you need to discuss it with your surgeon, or you could also discuss it while obtaining a second opinion with another urologist.
You mention you’re scheduled for surgery on 23 August, but you didn’t mention when you were diagnosed. The time between my diagnosis and my surgery was about seven weeks, and much of that time I spent researching on the internet and asking questions of others. If you’re feeling rushed into this you might consider taking a little more time making your decision, and doing that won’t necessarily cause you any problems with your disease progressing. This is your decision, not something you should feel forced or rushed into.
Continue asking questions about your situation, and if your doctor doesn’t want to answer them or tries to rush you into this I would consider going to another doctor. Know that we know how you’re feeling, and we want to help if we can. You’re in our prayers…God Bless
Lou
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Clur, I have sent you a PM. Check you messages. Hugs.
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Hi Clur,
I’m so new, tried to send you a note, but hit PM instead of reply. Did you get it?
The freak out part will not last forever, the “let’s get this over with and get on with life” part will kick in soon.
Thinking of you…ed -
Dear Clur,
First of all, you have a total right to freak out. It might be a good idea to freak out here, amongst us who understand.
Have you had a second opinion? It almost sounds like you haven’t had a minute to think.
There are lots of people here who have been through this, and it works out fine.
Just keep talking and asking questions….
We are here for you….
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006Sign In to reply.
