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
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
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
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!!
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!
I will get some asap thanks for sharing x carol
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