Waiting

Hello Ami17,

So sorry that you find yourself here, but glad that you've found us. Diagnosis is always a horrible shock and the pace at which all the testing and treatment is done seems overwhelming. This is why this website is so wonderful, as everyone here understands and has been through it and will support you and answer your questions.

In terms of the MRI, don't worry at all. It's completely painless and only lasts about 10 minutes. They may inject a contrast dye to produce clearer images, but this is also painless. The actual machine used is very noisy though. You are given ear protectors, but had I known how noisy it would be, I think I would have taken some small wax ones as well, or maybe an iPod to play some music. 

In terms of cytoscopy, if you are having  flexible cytoscopy, this is really simple. I had one. It literally takes less than 5 minutes, and just involves a little local anaesthetic applied, as a thin tube is inserted - completely painless.  I didn't feel the tube going on at all. You might also have ultrasounds of your pelvis and kidneys at the same appointment.  I know that some hospitals still use rigid cystoscopy, which is a similar procedure, and I expect another of the ladies in the group will advise you on that, if that's what you're having

Finally, the enhanced recovery programme is a good thing and nothing to be concerned about. It simply involves drinking some special high energy, nutrient rich drinks the evening before your op, as you will have to stop eating and drinking beforehand, so it fortifies your body. Enhanced recovery also involves a series of gentle pelvic floor exercises to help you heal and mobilise post operatively. The hospital or your Cancer Nurse Specialist will tell you all about these.

I'm sure others on this site will also respond to  your post soon to add  more info. and support. All of us understand the overwhelming terror that kicks in at the point of diagnosis, but if you read some of the past posts here, you'll see how fantastically supportive this group is and how it will support you every step of the way. Xxx

Hi Ami,

I had a CT scan and an MRI scan. The MRI was noisy. You have a buzzer to press, if needed. My machine stopped about 5 minutes from the end, and I was just about to buzz when a voice told me 5 more minutes, and it started again! The whole thing was about half an hour, and I had my contrast dye during my CT scan. 

I've never had a cystoscope, so can't advise on that.

I was on the enhanced recovery programme. I got a little booklet with excercises to do and advice on what to do after the operation, like walking each day, no lifting, etc. As mine was an early cancer I was later put on a self referral system, so after one year have had no more check ups! That seemed scary at first, but I don't think about it now(it will be three years in August).

The whole experience was not as bad as I had expected, and I recovered fairly quickly. In my case, not as bad as child birth. In my head I have a list of painful experiences, and childbirth still tops it !!!!!

xxxxxxx

Hello .

I completely understand how you're feeling and the difficulty of waiting and fearing the unknown.  You go from happily getting on with life one minute to becoming "a patient" subject to all kinds of prodding and poking the next!   I had an MRI with contrast and mine lasted around 30 minutes - one set of initial images and then a second set after the contrast dye was injected into my arm.  As everyone has said, the machine is pretty noisy and I took my own foam ear plugs as well as using their ear muffs.  It's painless but you do have to lie very still so make sure you're comfortable before they begin.   I also needed an iron infusion before the op so if you've been bleeding a lot that might be needed for you.  The infusion was no problem - just half an hour IV.

I wasn't on the "enhanced recovery" programme but I did make sure I ate healthily and exercised a lot in the weeks before the op and as soon as I could I got out of bed and walked up and down the corridor (nurses will encourage you to do this anyway).   As I had keyhole surgery this wasn't too much of a problem but I'm sure it would be harder with a larger abdominal scar.   The walking really helps with dispelling gas and getting bowels and bladder moving again!

You will get lots of advice and support on this forum so do keep posting.

xxx

Hi Ami17 sorry to welcome you here. I didn't have an MRI but had a CT scan instead, I have had lots of MRI scans over the years with contrast dyes for other non cancer related things, they are noisy, and my only advice to anyone having any sort of scan is once you are on that table, DON'T open your eyes until you come out again ! I was on enhanced recovery, it entailed me having to drink special drinks on the morning of my operation, and because it was delayed by about 2 hours (emergency) I had to drink some more. I think they are high energy drinks ? if they do give them to you make sure you put them in the fridge so they are nice and cold. I was out and home in 24hrs, no stockings or injections for me either. Very straightforward. Never had a cystoscope but my mum had many as she only had one kidney, she didn't every say it was too bad ? The loss of control takes some getting used to (if you ever do) but it is a means to an end.

I hope that all goes well for you, keep us all posted.

LC

X