Newbie, How do you cope with all the waiting :(

Hi

I can't help with the nephrectomy recovery, or how long it might take as I didn't have one.  But there are plenty of others on here who I am sure will be able to share experiences in due course.  

BUT.  I can relate to this "waiting" question you ask about :-)

Waiting, unfortunately, is absolutely par for the course in this game.   The NHS doesn't move fast.  Two weeks is pretty damn quick in my experience.  

I remember waiting for a CT Scan and a biopsy and then for my treatment to start (Jan 2022).  I remember I had my onco appt on 21/12/2026 and I phoned them back the next day to confirm my treatment.  But then Christmas happened, which meant there was a wait and then my day unit couldn't fit me in on their first available date in the New Year.  More waiting then until mid Jan. 

My strategy was to break it down into small chunks and focus on the short term, the next item on the list.  When I was waiting for the onco appt and the CT Scan they told me "2 weeks".  I focussed on having an appt date first.  I tried to keep myself busy during the day, doing something.  Working helped as a distraction.  The problem is the bu55er keeps popping up in your mind.  But by being busy I would sometimes realise "I haven't thought about it for 2 hours".  Great!  I would keep reminding myself that another sleep was a day nearer the weekend.   The weekend meant that was a "week" to cross off the list.  I kept going like this, iteratively.  Eventually I got a phone call, or a letter and this was an encouragement.  I was like a kid at Christmas when this happened because it was progress.   Then when I hade an appt date, I would carry on the same distraction and counting technique.  But this time rather than the schedule, it was the actual thing to progress my diagnosis or treatment or whatever.  

The start is the worst part for the waiting because there is so much uncertainty.  Once you have a treatment plan, and then when you start treatment, it gets a whole lot easier because you feel you are now doing something to address the cancer.  

My biopsy and onco appt both came through on the same day.  Typical!  They were in different places 20 miles away.  Did they give you a timeline for the biopsy?   It would help manage expectations.   

Some people on here have talked about phoning and chasing, to ask whether the referral had been received in the right place.  But I've never done that.

Hi Mmum,  Thanks for taking time to reply, it made so much sense, think Im getting myself into a state which is counter productive, but my personality type!

Got the biopsy Tuesday, then wait again for path lab and board discussion before hopefully getting a treatment plan.

Thanks

Gill

Oh that's fab news.  I was actually thinking when I replied, the date could come through in a few days.  But of course, I had no evidence or rationale to go on!  That's you moved forwards now.  Tuesday is only the other side of the weekend - four sleeps.  It's within touching distance.  

Good luck and keep us posted.  

Hi Gillyw.. I had a nephroureterectomy (kidney and ureter removal) 2 years ago aged 73. It is a big op and my recovery was slowish. They said 6 weeks but it took me a few months to be feeling fully normal. But I was not very fit so your husband definitely has a head start! I guess it depends how physical his work is as to how much difference it will make for a while. The great thing is that the other kidney can compensate and mine has grown to cope with the workload and I have had no ill effects or issues on that front. Best of luck to you both. It is all a shock at first but somehow becomes the new norm as time passes. 

My husband had a kidney and part of the ureter removed in 2021. He was 74, fit, active and in good health. He made a good recovery, I’d say about 2 months to be back to normal activities, apart from lifting heavy weights. He gave up alcohol completely though with hindsight I wish we’d been given some advice about a kidney-friendly diet too. He went on to develop metastatic tumours plus his remaining kidney is struggling a bit so life is more difficult for him now but still mainly enjoyable.