RC Collywobbles

Hello Leo, I think it’s only natural to get an attack of the Collywobbles. Try to think about the positives once the surgery is complete. There are many people on this forum who have had this operation and appear fit and well. I’m sure they will contact you soon. Good luck Leo we are all thinking of you. Garviv

Hi Leo,I was nervous leading up to surgery day and kept busy.I ended up doing chores I knew I would not be able to tackle post op and it helped.On the day of the surgery I was suprised by how calm I felt.The worst part was having to wait 7 hours to go down to theatre and saying goodbye to my partner.You have to trust in the surgical team and the nurses etc that if you do get any complications they will be dealt with promptly.The dr’s came round every morning and that was reassuring.I saw the stoma nurse everyday and she was helpful.For me the best thing was waking up free of the terrible bladder pain.Hopefully you will not be in too much pain post op.I didn’t get on well with the morphine but managed fine with paracetamol.Best wishes for a smooth surgery.Love Jane 

Hi Leo,

I can't offer any real advice, but it's completely understandable that you're slightly bricking it. I think I would be completely bricking it.

I can only really wish you all the best and I'm sure all will be well. 

Please keep us updated.

Trevor 

Hi Leo. As you know my RC happened over a month ago and my preop feelings are still fresh. It’s quite normal to feel apprehensive before a major operation especially looking at the list of possible complications, but these risks are relatively rare. Anaesthesia these days is very safe and your surgical and anaesthetic team would be doing these procedures frequently so for them it’s a routine. I have detailed my reasons for going with surgery elsewhere but I had the option of BCG available. In your case, you don’t seem to have any other option. Pre operatively I got myself busy in getting things organised for the post op period, e.g. downloading stuff on my tablet. I was also regularly going to the gym, so spending time elsewhere left less time to worry about things. And if I did have negative thoughts, I rationally convinced myself to look at positive side. As Jane found out, I was also very calm on the morning of surgery. You’ll feel a bit elated on the first day or two, partially from effects if drugs and partially from the relief of completion of surgery. The 3rd day is traditionally the worst, especially emotionally. But you’ll be looked after well. A tip, only use PCA ( patient controlled analgesia) if really needed for pain, as the medications in it can contribute to ileus. I’m sure all will be fine. Best wishes. 

Hi Leo1 

I found I was calm on the actual day of my surgery, and even slept well the night before. Anyone would be scared at the thought of major surgery, but for me I tried to focus on the end result, and not the process to get there.

I was desperate to get rid of my pain, and my cancer, so I didn’t think about negative “what ifs”. My thinking was more about the pain ending, and even if there was temporary pain after surgery it would go as I recovered-which is what happened for me. 

If I had thought too much about my surgery before I had it, I might have been scared out of doing it because it seemed too huge to comprehend. So I put my trust in my team of three surgeons who were all excellent. I wish you all the best for your surgery and getting through to the other side. 

Sarah xx

That's pretty normal feelings to be having. I must admit I felt a certain sense of excitement which seemed really odd, but I think it was my way of coping. Usually I am dreadful with anticipation about events.

In the run up to my op, I was still working part time, which helped make life normal. Otherwise I had been planning post op food, clothes, entertainment etc. Also getting gardening & other jobs done that I knew I wouldn't be able to do for some time afterwards. With 3 days to go, the hosp asked if I would have my op a day earlier (as another patient was having second thoughts). That probably helped put paid to nerves as I suddenly had 24 hours less to wait.

I'm sure the hosp will do all it can to put you at ease. Hope you will get a feeling of calm & that it will all soon be behind you. Best wishes.

Hi Leo

It’s perfectly natural to be anxious about major surgery - I was! I had successful Radical Cystectomy surgery for my pesky bladder cancer on 25th September. I’m not going to lie; it was a long hard stretch in hospital - a proposed 5 day stay turned into a 12 day stay in hospital (I really don’t recommend the food / accommodation / views - I’ve had better hols ).

Surgery was successful, but recovery problematic - I unfortunately developed ileus (due to the surgeon having to manipulate the bowel a little more than expected). I also came into hospital with a mild infection (slightly high white cell count), which just took time to resolve. I felt well enough to leave for a couple of days prior to release, but they were just watching that white cell count. Sleep is the best medicine & hospital is the worst place to sleep!  

Even though I had some extra complications it still just added an extra week’s stay in hospital; in the grand scheme of things that’s nothing! I would suggest that day 1 at home is really when your recovery fully starts! 

I’m sure your surgery & recovery will be less problematic than mine, and that you will find, like me, that the stoma and urostomy bag to be surprisingly easy to look after!

Best wishes 

Gareth

Hi Sarah,My thinking was similar to yours.I just wanted to be out of pain and said each day ‘I will get through this’xx

Hi Leo,

Yes the prospect was scary as I am sure everyone facing this op recognises. So I'll tell you what happened to me and why, despite the fear I was pleased to actually be having it. That's because 6 weeks  before the due date, they cancelled it  as I developed a blood clot in my lung and had to inject blood thinners every day while the tumour also got worse and produced more bleeding and pain.

Fortunately after lots more tests between Xmas and New Year, they agreed they would operate and I had it done only a couple of weeks after the original date.

Because of the above I could tell the anaesthetist wasn't totally happy with going forward as she escorted me on the short walk to theatre - and I thought she had taken a wrong turn because the room, though full of people, wires and equipment, looked like a big store cupboard until I noticed the big robot covered in plastic in the corner.

I sat on what must have been the 'operating table' no big overhead light and just a simple, blue examination couch that had various movable sections (like those in the rooms I met the oncologist etc in), while she inserted the cannula and then I remember nothing until I reached Intensive care over 6 hours later.

According to the surgical register I was 'good value' there because I made them all laugh remembering lists of things to check my brain hadn't been affected by the anaesthetic. (At 70 you can't be too careful!)

So nothing to be worried about and I hope your op goes as well as mine. And if there are complications they know what to do - I did have one but knew nothing about it until they told me much later.

I don't regret having the op at all. The cancer's out and the stoma's OK. 

So good luck and try to think how great it will be when your cancer is out too and you can get on with life as you want.

All the best,

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