We understand that people with cancer are worried about coronavirus. Here is the latest guidance. We will update it regularly.

Bladder cancer

A place for people affected by bladder cancer to support one another, ask questions, and share their experiences.

The Waiting Game

Herothedog
Posted by

I totally understand the wish not to announce the disease to lots of people, it can feel that one becomes defined by the illness. However I would hate us to go back to the days when everyone referred to the C word and spoke of it in hushed voices as it was seen as a death sentence. With so many treatments available and constantly being developed, many folk live long healthy lives after diagnosis now. And It’s no weakness to struggle with your see-sawing emotions. Cancer is definitely a big shock and everyone starts off feeling terrified. Over the past 3 years the most valuable lesson I have learned is to take one day at a time and make the most of every minute. Strange but I have become a more contented person thanks to cancer. x

lucy-l
Posted by

Hi Tenseman,

it sounds as though both you and your wife are struggling with this albeit in different ways. I felt like you when my husband was diagnosed with cancer 6 months after my diagnosis. I could cope with my own but  fell apart with his diagnosis. Luckily I was able to get help through counselling and therapy.Perhaps talking it through with your GP may help you.

The main thing to focus on is that it is a very treatable cancer as others will tell you.

Now you have found this site you know we are all here for you whether you just want to talk or get advice.

Best wishes Luce

Tenseman
Posted by

I do need some emotional help, I talk it over with my kids, two girls doing psychology at school so they have skills but I must be careful to still be the strong parent for them. my gp got me on the waiting list for cbt before my wife's diagnosis as I had depression already. Her situation is of course the most important to me, my problem is only mental and can be delayed. I wake up early , bed sheets set with sweat in turmoil over C and me.

lucy-l
Posted by

Talking to someone suited me best but there is some useful information online for depression and anxiety.

You could try these whilst you are waiting for your referral.

Two sites I have used are - Moodjuice and Mind. X

buttercup01
Posted by

Hi @tenseman

You could also contact the helpline on 0808 808 0000, either to talk things thru or to get info re Macmillan n Maggie's centres locally, who have face to face counselling.( On " in your area" too)

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Tenseman
Posted by

Thanks for the suggestions  , we now have a date in late March for a TURBT & ready to take any cancellation. This .makes a big difference in tension levels.  

The letter only gave the date for " a procedure, " so she phoned to confirm it and spoke to a surgeon , plan is to do a TURBT and examine the cells immediately & give a dose of chemo if appropriate .

Tenseman
Posted by

Got a call saying plans have changed, our hospital can't do TURBT after all, so will get new date at another hospital. Back to that horrible waiting stress!

Why are we mislead and kept in The dark all the time?

Inanna
Posted by

I can't  believe it.  What is the problem with your hospital! All this awful waiting. 

I hope that you will get better results with the new hospital,  you so deserve it.

Inanna xx

I know that I don't know
winkers60
Posted by

I’m so sorry you are both being messed about with these changes and delays.It’s not unusual for consultants to work at more than one hospital.I hope they can sort everything as soon as possible.Love Jane xx

lucy-l
Posted by

Hi Tenseman,

You really are being treated badly. At my hospital I have been told that they have a 24 day window to do a TURBT and I am sure that other hospitals have similar guidelines. When I go for my cystoscopy and they find tumours I always get a date for my op there and then and haven’t had one cancelled yet.

I should take the matter up with PALS, it really isn’t fair to you and your wife to have to go through this.

Regards Luce 

Wilbert
Posted by

Its totally  unacceptable  the way you have been treated No wonder you feeling as you are I really think a complaint to Pals is called for If you dont feel up to it maybe one if your daughters could help Cbt is very  helpful I did a course basically write down the worse case scenario and then try a more rational security 

I used to think if I couldn't contact Mr W by phone he had been killed in an accident Then I thought again  and decided  he was in an area with poor mobile signal I covered pages with irrational versus rational thoughts writing things down helped immensely 

Best wishes

Wilbert x

Tenseman
Posted by

Wife has had operation, TURBT and chemo. Now in for a second night. Cant go home until wee bag running clear. 

Catheter is unbearable, that and bladder pain is making her so sick she wont drink enough. 

Night staff are on the ball with drugs, so she drinks loads at  night. Day staff ignore her pain so she has been not drinking.

rily
Posted by

Hi . Good to know your wife has had the op, but sorry to hear she is having some discomfort with the catheter. Unfortunately this is not uncommon. When she gets home, you need to encourage her to drink plenty to keep things flushed out. When the catheter is removed, it may be a bit stingy for a few days when peeing, but this usually subsides. A few weeks wait now for biopsy results. I hope all goes well. Best wishes.

Best wishes to All,   rily.  What is a Community Champion ?

Denby
Posted by

Oh-ooh, so sorry to hear this. Only thing is to complain direct or via PALS urgently. Point out inadequate pain relief is hindering her recovery and causing her to 'bed-block'. I know complaining is a pain but at least you hope they'll treat the next person better: having had to make two complaints against same ward 2018 and 2019 for failing to handwash [!], plus other things, I know from experience, not settled yet but PALS have been brilliant.

With best wishes for her to be fit to come home soon, so she can relax away from the bad memories and drink all that you give her.

Denby 

Tenseman
Posted by

We now know why the pain continued, cancer is mussle invasive. Bladder will have to come out. 

Had .mri and ct scans, if its gone rougue its game over.I

With corona virus epidemic will surgery go ahead in time?

With 3 teenagers at home , isolation is unrealistic.