Bladder Cancer

Hi Hopeful,

I'm sure empathy will help, especially on communication with patients. My own team  have been very good on that front (and I always want to know the worst so ask about it) but, especially with new surgeon trainees, I do feel they often need special help. Eg I sat through a tecall  on my husband's health (re potential cancer recurrence) and it was only when we saw the letter online weeks later that we realised it was back (and been staged and graded) and that he'd been forced into 'watch and wait' with no active consultation. My experience (in same hospital and with different part of same specialism) was completely different - openness, discussion of way forward, collaborative. Until it happened I would not have thought it possible. 

All the best at work,

Latestart

Completely agreed. Good communication and understanding of the patient’s and family’s emotional needs are very important and can sometimes be overshadowed by the technical aspects of care. 

Great post Hopeful, wow that 6 months has gone by. I remember you coming on the forum , going through the turmoil of making your decision. You have done brilliantly , Well done to you. I hope your return to work isnt too taxing on you and you take good care of yourself. May I suggest that your patients are lucky to have someone with your compassion and empathy. Take care friend x

Yes, it helps if you can imagine what it might be like as a patient. Am hoping to work with my medical team and possibly pre-op patients  (at the recent suggestion of my surgical CNS) answering questions before the op. I have already also reviewed patient documentation a couple of times.

I always say a properly informed patient works best with those treating us.

Latestart

That would be brilliant Latestart 

To speak to someone who has been through it would be really beneficial especially if you get to do it face to face. I had no idea as I posted before that a biopsy was taken during the RC and sent away it was all news to me when I rang my cns and I had yo wait for the results. I wasn't angry or anything, just more shocked . I think its a great idea and you go ahead and do it.

Best wishes 

Mark

Thank you for your very kind comments Angela. Yes it’s been a difficult ride but would’ve been harder, had I not had the support of kind friends like you on this forum! I’m on a phased return at the moment and my managers have been very kind. Energy levels are not the same as pre-op but slowly improving. I have come off the on call rota but also thinking of dropping a day per week to have a slightly better home/work balance, and of course more time to play my video games!! X

That’s a brilliant idea. You have a wealth of personal experience which should benefit the patients immensely. Some of the advice and practical tips I had on this forum from friends like yourself was more relevant and useful than what I had in urology clinic (though they were very helpful too). Good luck. X

That's great, patients need to hear information from those who have been in their situation. My hosp prepared a patient info DVD, for which I did some filming. I've also been a 'buddy' for many patients at my hosp choosing between BCG & RC, or between stoma and neo. Sadly, I never got to hear how they got on afterwards.

Those are both good ideas, pity you got no feedback though - after all the good thing on here is that we hear how people are getting on and that helps us as well

Hi Maz

Sorry to hear about your situation. Unfortunately, if the Consultant says the BCG isn’t working then Cystectomy is probably the way to go.

I had my bladder removed last September. I’ve been back at work since January (I’m only in my early 50’s so bit early to retire, but have gone part-time - there is no way that I would have been able to continue with the 60 hour weeks I was working before diagnosis!)

A cystectomy is major surgery & both my consultant & a consultant at the local church have said it is normal to take a year before normality returns. Ideally your husband will only be in hospital for 5 days; I was in for 12 due to ileus complications post-surgery. My hospital carries out robotic surgery forming an ileal conduit to the stoma, generally every Wednesday - the gentleman in his 70’s who had his Cystectomy carried out a week after mine was released before me!

The stoma nurses will ensure your husband is confident with stoma care / bag replacement before he leaves hospital. I was very tired when I left hospital (sleep is the best medicine & a hospital is the most difficult place to sleep in) & still sleep loads more than before the Op - I will now happily sleep 10–12 hours a night if allowed (previously 6-8). I also had surgical complications a few months following surgery, wherein my left ureter became narrower - I now have a catheter tube from my left kidney, through the ureter and out my stoma, which needs to be exchanged every 3 months. 

Despite this complication, and only being 6 months post surgery I feel almost back to normal, albeit I am a lot more tired than before surgery. I hope all goes smoothly with your husband’s surgery.

Best wishes 

Gareth