Bladder cancer

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

I still can not sleep

steve19601953
Posted by

going in on Monday 30th September for CT

and then pre assessment before operation 

they have not told me how big the tumour is

just it has to be removed I keep waking up at silly hours mostly at 3 am then have to get up as I can’t sleep I also don’t know what to expect on the day I go in please help

rily
Posted by

Hello and welcome to the group. The early days of uncertainty can be very worrying and we know how you must be feeling. The fear of the unknown can be hard. The CT scan is normal and mainly as a precaution to rule anything else out. It also gives them a better picture of what they are dealing with. When you have your scan, it is unlikely they will tell you anything on the day, as the images need to be analysed later.

The pre assessment is a series of general tests and questions to assess your fitness for the op.

The op itself is called a TURBT (trans urethral resection of bladder tumour). A fairly standard and routine procedure. Usually done in day surgery or maybe an overnight stay. Possibly a bit longer depending on what they find. The surgeon will sit down with you first and explain everything. The tumour will be shaved away under general anaesthetic. You can normally be up and about after a day or so, but nothing strenuous for a couple of weeks. It does sting a bit when weeing for a few days. They will send a biopsy off for testing and this determines what follow up treatment is needed. Once you get the op out of the way, you will feel a lot better.

Many of us have been through this and are doing ok. Feel free to ask any questions. Best wishes

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

winkers60
Posted by

Hi steve19601953,I'm so sorry that you are not sleeping,is that down to the worry about the operation or urinary symptoms or both ? The pre-op assessment doesn't usually take that long.At mine they weighed and measured me,took urine and blood samples,an ecg tracing of my heart and asked various health related questions eg are you diabetic,epileptic.You will see an anaesthetist to talk about fitness for the anaesthetic.At the ct scan they will probably inject a contrast dye as this helps define the areas of tumour better.The TURBT procedure doesn't usually take that long.As rily says the surgeon will explain the procedure and you will sign the consent form,you will also see the anaesthetist beforehand too.They put a needle into your hand in the anaesthetic room and the next thing you will be waking up in recovery.I had a drip up with fluid to flush through the bladder and a catheter put in to collect the urine.The catheter was removed the next day and I was allowed to go home when the doctors were satisfied I could pass urine without problems.It will feel uncomfortable but you will be given painkillers and I've always felt fine after a few days.They will take biopsies of the tumour,waiting for the results is an anxious time.I hope it goes well.Best wishes.Jane

foxbrush
Posted by

Hi steve19601953, no need to worry about the actual op, my TURBT was my first ever operation under general anesthetic  and as said above, needle in the wrist and then I was being told to wake up. Amazing. I had a catheter for two weeks as I take blood thinners  and hence the bleed to a while to stop.

The worst part is all the waiting involved with our situation, so try not to worry, oh yes and I was out 2 hours after the op.

Good luck.

Denby
Posted by

Hi Steve19601963, last time (with bladder cancer if you have the common type it's often needed several times) after his TURBT my husband was also heading home 2 hours afterwards. And the surgeon had already been out to the waiting area [just as well I was there!] to see me and tell me it was all fine before my husband was even awake.My husband always finds a pee bottle by the bed reduces the sleep disturbance caused by post-op need to go more often in the night due to residual irritation.

Do take notice of what others say though and take it easy at home for as long as you need to, you can't see the wound where the tumour gets removed but it still needs RnR for best healing. So if you don't happen to live with anyone able to care for you, a good idea between now and the op is to stock up on ready meals, favourite [nutritious!] snacks etc. to make life easy afterwards. Some people find anaesthetic and or the other treatments you may well get leave a headache, some find caffeine helps with that. Any doubts check with your pharmacist.

We'll all be thinking of you Monday anyway, all the best,

Denby

Herothedog
Posted by

Hi Steve, the waiting is generally worse than the treatment. Could you ask your GP for help with sleeping? Last thing you need is to be overtired. As everyone says the actual TURBT is nothing to feel apprehensive about but then of course you'll be waiting for biopsy results. Overtime I've got better about putting the issue to the back of my mind, though last week (2 years in) I was pacing and feeling pretty anxious about my results. Welcome to our club (which no one wants to join) we'll all be rooting for you on the 30th. x 

k.man
Posted by

Hi Steve hope all goes well on the 30th for you . Hope the post from others here helps you understand a bit more Its helped me a lot reading post or asking others here questions  most times someone has the answer  cheers harry

Denby
Posted by

Hi again another tip-google "NHS sleep" and you'll get to a page full of useful advice and links. To which I'll add, there is a free ap called f-lux which I heard recommended on BBC R4 ages back and have on my pc as we speak. It automatically reduces the blue light on your screen in the evening, and it's the blue light wich helps ziz your brain. Though it's still best to switch off all screens an hour plus before you turn in. My other thing if you like it, is flick a few drops of lavender oil onto the underside of your pillow or on a tissue under pillow, so it gently diffuses thru pillow. Very soothing trad remedy. Some people find that no caffeine from mid afternoon helps with sleep-though cutting out suddenly/completely can bring on nasty headaches. As with so much else, these may or may not work but trying to see what does gives you back some control and that is important and positive in the cancer community.

Sweet dreams, sincerely,

Denby

Richard 1944
Posted by

It is natural to worry. Once I'd been diagnosed my wife and I decided to be positve. Family and friends are very supportive. I had a tumour removed last September. Had a spinal injection so was awake throughout the procedure. Quite painless. Surgeon explained everything. I had a catheter in overnight. Once I had passed urine was able to go home. Expect to pass blood for a few days until the wound heals. In my case the surgeon wasn't happy about something so arranged a CT scan. Unfortunately, the cancer had spread. Waiting for the diagnosis is obviously the worrying time. Being positive is a great help.

Don't hesitate to contact your dedicated nurse. No question is too silly to ask.

After 9 cycles of chemotherapy my tumours have shrunk. Some folks have side effects but I only had fatigue. Good to go for walks every day. Going on holiday today. 

Oncologist and nurses all give the same advice. Get on with life as usual

Hope all goes well for you. Be assured of support from those on this site.

Best wishes Richard.