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cystectomy nerves are getting to me.
:'( I have been waiting for a cystectomy for four years now.
I was given a date, and now it has been put back to september.
It is bad enough knowing that I am having major surgery,but to have the operation put back another 6 weeks is really making me nervous.
I still do not have a answer as to whether I will need a Hysterectomy aswell.The surgeon who was doing the operation,will be on maternity leave and I have to have another surgeon do it.I have never met this surgeon.I do not know this man,(I was used to my lady surgeon)and I do not know what his plans are right now.
The hospital made me a appointment to see a stoma nurse for two weeks before the surgery.But no appointment to see the man surgeon.And the hospital have told me that I will not see him until the day I have the operation done.
I have so many questions to ask him and things to plan.
Things like family and pets and travel home etc. -
6 Replies
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Lou you are right about my husband making the surgeons listen.
He adores me and wants the best for me.
He said that the UK has the worse NHS service in the world.And that he wants to make sure that I get the best care and treatment possible.After all I did make national insurance contributions and paid taxes when I was working.
I had to give up work because of this condition and only my family can see daily what things are like.
I have been having getting constant infections in my bladder and the Doctors never give me anything for it,because they say that antebiotics won’t work.
So I have to suffer.When I am like this I am tired all the time and can’t do anything at all.
Hears hoping that the next 12 weeks will go by quickly,I don’t want this pain and incontinence etc for the rest of my days.
If this operation will stop all this, then it’s something to look forward to isn’t it?
I know I don’t actually have BC,but I do understand how all of these people feel.
And I am thinking of you all.
take care Pink xx -
Pink,
I know the way your health care system works is different than here in the US, but I’m very upset to hear that you’re in so much pain with no real relief. Then on top of that having to wait all this time for your surgery is appalling. You mention taking your no nonsence husband with you to your next appointment, and I do believe that is a very good idea. I hope he’s able to get them to sit up and take notice and do something to help you sooner rather than later.
All the best to you and yours,Lou
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Lou, I have suffered with IC and PBS for years, the pain has got worse over the past few months also the bladder problems have worsened too.
I am unable to go shopping or play with my grandchildren now because of the circumstances.
The hospital have tried everything apart from taking out the bladder.
So thats why it has to come out.
It’s scary!! I’m 43 yrs old and have a family to consider.
The pain is really bad and the pain killers (pretty strong ones)don’t really help alot.
Thankyou for your reply.
I hope you are well.
take care pink -
Pink,
Although I’m not in the UK, I am a woman who’s had a radical cystectomy and received a neobladder in it’s place. You don’t mention why you’re having this surgery (and you don’t have to), but I imagine it can’t be for cancer because no one should wait four plus years for this surgery if that were the diagnosis. When I had my surgery they did also do a hysterectomy, and I know the reason it’s done is because of the possible spread of BC to these organs. So again if you don’t have bladder cancer it’s possible you may not have a hysterectomy. Another factor for or against the removal of those organs could be a woman’s age, and I don’t remember if you ever mentioned previously what your age is (although you don’t have to tell us that either).
Except for incontinence the first couple months (which was the worst of it) and a little longer a lesser degree of incontinence, I’d say I have a fairly normal life. I must say I’m amazed how well it all works.
I’d be glad to answer any other questions you might have regarding your upcoming surgery. I’d probably be drinking lots of hot tea if I were in your situation (the waiting), but I’m sure it will all work out well once you have the surgery. Best of luck.Lou
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:'(I am really getting stressed now.
The hospital have changed the date of my Cystectomy again!!
It is now October,which is four weeks after the second date they gave me.
So 12 weeks today, I am having a major operation.
I was wondering if there are any female members who live in the uk.?
Who have had,or are having a Cystectomy done at the UCLH hospital in London uk?
I would like to find out more about the care and treatment I will be getting.
The staff at the hospital always say that they will answer any questions I have, but, still have not told me exactly what is being done.
I know I have to have my bladder removed and a neo-bladder in place of it.
But I still don’t know if I will have a hysterectomy or not.My doctor does’nt know either.
And the surgeon said I would have to go on a special protein drink diet???
Why? I ask myself.
I am so baffled.Good job I am seeing another surgeon in 4 weeks time and will be taking my (no nonsense)hubby with me.Maybe this surgeon will be able to answer this for me. -
Hi Pink
I really feel for you and your dilemma. You shouldn’t have to wait 4 years for this operation only to have it delayed yet again and then a change of surgeon. You have a right to meet the surgeon who will perform the operation before the day and you should demand to get an appointment to meet with him so that you can have your questions answered. DON’T TAKE NO FOR AN ANSWER.
Good luck and try not to worry too much. I will keep you in my prayers and trust it all goes well.Jeff
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