Waiting for surgery

Hi Becks,

sorry to hear your story, it’s a horrible time for you …..being diagnosed and then the wait……

Sadly, I think that lots of us are in a similar situation . I was looking a at mid to end of Junk for my op ( radical nephrectomy) ..however I am now going to have the op privately to bring this forward ( I am fortunate to be able to do this).

I hope that you hear something soon.

big hugs Jules x

So kind of you to reply Jules. I hope your operation goes well.

Which part of the UK are you in?  Try PALS if E&W.  There's some older discussions on here where people have shared their experiences and this had worked for some.    It's a patient advice and liaison line - they will chase urology on your behalf and find out what's going on.  You need to keep chasing them and they should be giving you updates, else how do you not know that someone has forgotten to do something and you are actually not on the waiting list?    You can't live in wait mode indefinitely, it's unreasonable.  These people experiencing same:   

Thankyou Mmum for you helpful and supportive reply. I've contacted Gloucestershire PALS but I will keep chasing as you have suggested. Thankyou also for highlighting other people experiencing the same issues.

Hi there, sorry - I haven't been on for a while - I had the nephrectomy done on 29.3.22, so am in recovery mode now (I also had my gallbladder removed at the same time as they spotted a 1cm polyp whilst looking at my scans).  I had the op at the Royal Free Hospital London, I live in North Wales - so it was quite a journey going home - lots of pillows & throws to cocoon myself.  My wonderful husband stayed in a hotel and ferried us there and back in our own car (my health board would not allow my husband to travel in the hospital - supplied transport).  Anyway, op went well - had robotic assisted keyhole radical nephrectomy of the right kidney - I am very sore and trapped wind is my worst enemy!!! But I am getting stronger each day and managed to walk around the block today.

In answer to the delay issue, I had a similar problem - after months of UTI probs was finally diagnosed with kidney cancer on 14 December 2021 - so it took approx 3.5mths to get the op.  I did end up going to PALS at my local hospital who admitted that my referral to the Royal Free Hospital had been put in the wrong 'pile'.

From my own experience, I would advocate phoning/contacting all the agencies involved - very difficult I know when you're so vulnerable and stressed out.  If you are unhappy with your response aim higher up - the boss, the boss' boss etc.  Don't forget about the chief exec of the health board and your MP - they are public servants and we pay their wages.

Sorry for the length of this post - I feel your anxiety - we should not have to do this ourselves.  Sending you love and best wishes xx

Carol

Thankyou for your supportive reply Carol. I do hope your recovery doesn't take too long. I think not knowing when you'll have the operation causes the greatest anxiety. I'll follow the helpful advice you have shared. xx

Thankyou for your supportive reply and heartfelt wishes Carol. I'll follow your advice. I think waiting without any idea of a 'date' causes the greatest anxiety. I hope your recovery doesn't take too long. kind regards, Becks xx

Hi Becks,

Sorry to hear that you’re having to wait too! It’s so tough! My mass on my kidney was found in October, told in December I needed surgery and that it would be a 2-3 month wait. Lo and behold tho I am still waiting. I also tried to be referred to another trust but they are just as slow/bad at communicating if not worse than where I am at the moment. Definitely go through PALs, I can’t say I’ve had much luck with them myself but at least you’ll have your queries on record. Sending positive thoughts and hugs xx 

Glad you’ve managed to have your Surgery Carol!! And I’m glad you’re recovering well! Keep us updated on how you get on xxx