Hi Sylvie,

I'm glad to here Ronnie is improving and already looking forward to returning back to his hobbies.  It's a pity he won't get to see his surgeon in person.  Unfortunately telephone calls and zoom meetings have become the norm so often now.

Kind regards, Anne

But surly he could have taken the time to just see him and check him over or am i asking for too much ? maybe i am. He said Ronnie would be getting an appointment for a CT scan of his abdomen,pelvis and chest.?

From Sylvia

Hello can you tell me if it is a regular thing to have a CT scan on abdomin,pelvis and chest after a radical cystectomy. Or are they looking for more cancer. ? Really worried .

From Sylvia

Hi Sylvia and thanks for posting.  It sounds like you and Ronnie have had quite a journey.

CT scans are part of the follow up someone will have after a radical cystectomy.  You can read more about the follow up here.

Sometimes appointments are over the phone or via video call.  This has happened more since the pandemic.  Perhaps you or your husband could ask his consultant if the next follow up could be face to face. 

If you do go to a face to face appointment it may not be Ronnie's consultant that you see, but someone else who is part of the team caring for him.

Having a cystectomy is a big operation and it does take time to recover. I know other people have mentioned contacting a specialist nurse that Ronnie might have, who can offer advice and answer questions.  If he does not have one you can leave a message for the team that has been caring for him. 

I hope this is helpful.  Please get back to us if you need any more information or support.  You might like to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Take care,

Rachel

Thanks for your help

From Sylvie

Ideally he should have but unfortunately due to demands on the NHS and covid restrictions things have changed and not for the better sadly.  It's very common now for post op reviews to be online or over the 'phone.  My urology follow up was by 'phone this time and my surgery and recovery wasn't even discussed.  I was asked about the date of a gastroenterology appointment instead and would have had no follow up call at all unless I'd chased it up.  I know many people who have had similar experiences. In fairness we expect that at post op follow up appointments we'll be examined by our Consultant whereas in reality not many do that nowadays so the appointment is just the same as it would have been over the 'phone.  There is also reluctance to bring unwell or vulnerable patients back into hospital, especially through busy reception and clinic areas when covid numbers are still so high.  My follow up after the radiotherapy breast cancer treatment was also over the 'phone.  I originally had dates for an appointment with the Consultant Radiographer and a 'phone consultation with the Oncologist scheduled for after treatment but because it had to be delayed as I was too unwell they were rescheduled.  I then briefly spoke to the Oncologist on the phone who asked whether I'd been able to complete radiotherapy then discharged me from their care as I'd decided to stop the medication I'd been prescribed to prevent recurrence.  She did say my GP and Multidisciplinary team would closely monitor me but since I have very little involvement with my GP and certainly don't have an MDT I have no follow up or monitoring.  As Nurse Rachel suggested it's worth asking if Ronnie's next appointment could be an in person one.  Anne

Yes i think i will but i wont hold my breath. I must admit i was a bit worried when the letter from him said he could drive and an appointment would be sent for him to go for a CT scan on his abdomen pelvis and chest. I was reading in-between the lines thinking are they looking for more cancer . I will ask our consultant when he phones. I will let you know the outcome of the call

Regards Sylvie

Apologies for my late response Sylvie.  That would be very kind of you and much appreciated.

Best wishes, Anne

That's good news Sylvie.  I'm glad Ronnie's lymph nodes were clear.  Hopefully his appetitie will improve but meantime try to encourage him to eat even if he doesn't really feel like it.  I've struggled with diet and am still taking medication for nausea but have to make myself eat because of excessive weight loss. Sometimes that seems easier said than done it all aids recovery.

The ct isn't long so hopefully the results will be quickly back too.

Best wishes,

Anne