Just diagnosed and having surgery

Hi There , My journey has been so farva bit of whirl wind.I am lucky enough to have private health cover through my emoloyer therefore within the last week and a half I have had an ultra sound and CT scan as well as.a diagnosis for RCC. I am due to have surgery on Wednesday this week. I am very grateful for how quickly this has progressed as the pressure of waiting was bad enough for me and I realise I am lucky compared to weeks of waiting for some. 

My closest friends and family now know but why do  I feel very alone ? It's so hard putting on a brave face when all I want to do is whail /sob from the top of my lungs !! 

My partner is quite closed down and does not respond well to tears etc so I feel as if I am carrying on as if it's just an in growing toe nail removed rather than a kidney.To top it all off my employer called me last week and thought i would be back at work in weeks.

I dont wish to wallow in feeling sorry for myself but at the same time am finding really hard to stay upbeat for everyone else's sake 

Is this a normal experience for others or am I being selfish 

  • That should read - my employer is expecting me back at work in 2 weeks ! 

  • No, you're not being selfish n Yes, it is a normal experience.

    You've had a shock, apart from anything else,  n once u have the op certainly don't expect to b back at work in 2 weeks!

    In fact, u may need to do a phased return.

    If u can't talk to ppl n r putting on a brave face for them, then come on here n talk to us. We've been there n got the t shirt so we can support u through it. There's even a place ( The Room) to vent, rant if need be n another to wail /sob(Emotional issues)

    Good luck for your op on Wed. Let us know how it goes x 

  • Thank you. I will certainly check out the suggested rooms. What can I expect from the recovery time both physically and mentally etc  -  everything I have read so far has been a little conflicting.   I have been told thecancer has not travelled anywhere else which is good however I can't help but wonder if something has been missed or lurking around. Sorry to bombard you with questions 

  • Thank you. I will certainly check out the suggested rooms. What can I expect from the recovery time both physically and mentally etc  -  everything I have read so far has been a little conflicting.   I have been told thecancer has not travelled anywhere else which is good however I can't help but wonder if something has been missed or lurking around. Sorry to bombard you with questions 

  • You’ve got through the worst already! It’s traumatic going through the tests and waiting for results. My GP said that the diagnosis always is a shock and the body reacts to that! I found I couldn’t eat, sleep or function normally! Once a plan is in place things get easier. The operation is major and takes time to get over. I went back to work as a teacher after seven weeks. Looking back far too early, physically and mentally. After the operation take it very easy. It’s natural to be frustrated. I just made myself shuffle around each day and gradually built up the walking. It certainly helped ease the pain. 

  • Thankyou for your reassurance . I have been the same i e  not eating or sleeping etc but thankfully it wasn't too long before i knew unlike others.

    Now close friends and family have been told it all now  feels a bit surreal . Its as if it is happening to someone else. I cant quite  take it in that it is me who has it. I am just  ploughing through the next few days now until surgery.

    How long ago did you have your surgery and have you had any scares since. I think that is my biggest worry ime that it will come back or be some where else already.

  • Hi Spin, I think u need to  try n take it a day at a time. 

    Don't waste your energy on what ifs, save it for dealing with the immediate things, eg your op on Wed.

    For what it's worth, I had my surgery 14 years ago next month and yes, I've had it pop up elsewhere ( secondaries) in that time - so have others in this  group - but we're still here thanks to regular monitoring (in my case every 3 months) and drugs in most cases .Personally, I've been on a treatment break the past 3.5 years. Long may that continue!

  • I had my surgery in January this year and have just had my six months ct scan which is clear. My tumour was small, low grade and inside the kidney so a low risk of recurrence but I can’t help worrying. Mostly I put it to the back of my mind and only my scars remind me that I now only have one kidney! This group are amazingly supportive and understand. Only someone who has heard those words “you have cancer” truly know what you’re going through.

  • I had surgery 5 years ago and went back to work at 4 1/2 weeks - which was too soon physically.

    Your employer is totally daft - you're having a major organ removed for goodness sake. Any significant surgery you'd expect a minimum of 6 weeks assuming everything goes totally to plan. Whatever you do, don't feel pressured into going back to work before you are ready. You'll still be in pain just walking at 2 weeks.

    One side effect of surgery is extreme tiredness usually mid afternoon, for what can be many months. My surgeon told me that this was very very common - so a staged return as Fl0ral woman says may well be necessary.

    I developed mets after 2 years - but I'm perfectly well and stable and have been on treatment for three years. My friend, who had RCC & a nephrectomy two years before me is still totally clear at 7 years.

    Just worry about the here and now. I spent the time before my op getting everything in the house / garden / work organised so that I didn't have to lift a finger, other than to drink wine in the garden once I was recovering. Bizarrely ended up being a rather nice summer!!

    Lots of luck to you.

  • Jo300. A drink in the garden sounds like the right way to go. My op is in a few hours later today so I will have that lovely thought in my mind 

  • Good luck for your op very soon

  • How was the op? Hope you've had a decent sleep n are feeling a bit perky.Thinking of u x

  • The op apparently went fine . I was taken to HDU as I was struggling a bit. Yesterday was a bit rubbish as they couldn't get pain or sicknesd under control which wasn't nice . Today I am feeling much better so it's onwards and upwards from here 

  • Glad you're feeling better much better today x

  • Aww Spin, so glad the op went well xx Glad to hear that you're feeling better today too xx Love and hugs xx

  • hi jane

    ive also had my kidney removed last month, no one advised me about diet, I know my remaining kidney took a dip in function, but I don't know yet how much ,did you have any advice ? carol x

  • Hi caza123

    my surgeon immediately after surgery told me to have a low protein diet. I didn’t cut all protein out of my diet but halved it. So half a chicken breast instead of a whole one. Half a yoghurt etc. It seems to have worked as my remaining kidney is doing a good job by itself!

  • Glad to here the op went well. I think you're day 4 now so hopefully nearly ready to go home. Looks like it's going to be sunny this weekend - so out in that garden to relax!!

  • Hi

    My friend really struggled to regain function until he did a lot of research and started to drink Nettle tea (Holland & Barret, or Waitrose do a mint nettle mix). After a year of no joy, his function corrected immediately. On his advice I drank it from day one and never had a dip. I have no idea if that's luck or voodoo, but worth a shot. Once you get used to the taste (it's not unpleasant) its actually quite refreshing instead of builders tea. Good luck!

  • thanks jo

    I will get some asap thanks for sharing x carol