Recovery after kidney removal

Hi Soapbox as you can see I have also been in your situation and to be honest a very similar experience.

I feel that this forum help's greatly and it's also a good way to help others in our situation.

I had my right kidney removed after a total nephrectomy as monitoring had shown no increase in size, but it was having a party behind my kidney and luckily for me it was removed before it decided to go traveling around my bloodstream.

So 8 months on gone from being really active at work fairly fit, lost weight and taking care of myself.

I have gone back to work on light duties but I still feel like I am not quite sure if I can return to normal ( as before what ever that is ) understandable if totally honest.

I also have what I call imposter syndrome as I feel as yes I have had an operation and been on the journey but it had to be done and really I am not a hero ( that's the Macmillan team & NHS people who on the whole have been fantastic )

My tolerance of people who are ill is really low but I mean oh I have a pain or cold, or I might have COVID you must have experienced the loneliness of being on a ward with no visitors etc. Rant over.

I had a CT scan last week and I am going to see my consultant next week

I believe that I am more positive but the nagging doubt never goes away of what if .

At least we both are here hopefully helping people and ourselves .

Hope this helps and please feel free to let me know your thoughts.

Stay positive.

Mike

Hi vanmanmikey

Thank you for your insights. I feel the same as you as in being an imposter.  My recent scan shows no sign of cancer in my body just some age related stuff. That is great news for me as I can relax till next scan. But as I was told I'm at high risk of it returning I do have that deep down fear. 

I was very lucky and I.am eternally grateful to everyone involved in my vare at that time. But I don't feel as though I should be part of these groups as I have no cancer now and there are lots of people still fighting and in more need of all the support they can get than me. 

I'm so conflicted in my thoughts but it's nice to know others who are going through the same thing.

Thank you

Soapbox

Hi Soapbox I totally understand your thoughts as I was offered a trial after my surgery as I am a intermediate risk.

This involves a immunotherapy drug on a chemotherapy  ward  closer monitoring of my bloods and CT scans.

This may help people in our situation with Kidney cancer be it long or short term solutions. So every month a pay a visit to the Chemo unit and have my infusion. Let me tell you that the staff are of the scale and the patients are even better ️ I have met some wonderful people who are not sure of what is going to happen today/ tomorrow or next week but there spirits are good under the circumstances.

Unfortunately I stopped the trial as the side effects were really killing me ( joint pain, tiredness, lack of sleep, no appetite, mood swings and night sweats off the scale even for a menopausal 55 man) However at the moment I am on treatment to combat the side effects so fingers crossed.

I think that your story helps others because we are all going into the unknown and I think that they all appreciate your insights and it helps them try and understand what they are going through, if you told me  I would be on a forum talking about this last year I would have said no way, yes I read lots of stories & comments.

If you help just one person who needs a answer then your not an imposter, I had a freak out when I got the call saying your operation is in 2 weeks ( I almost stuck my head in the sand)

But with the help and support of Macmillan they made me realize that I could cope.

Don't worry I still have doubts but if someone read's this thread and see's how individual's cope when they come together in a common cause then you should be really proud.

Stay positive and stay safe.

Cuppa time.

Mike

This conversation has made me cry with your brutal honesty and transparency.   I applaud you both.

I think nephrectomy or otherwise, once you are in the club, outlooks and perspectives change and we are forced to confront the fact that no-one lives for ever.  But even with a NED or clear scan, cancer can return at any time.  It is that fact at the back of our minds that is the game changer.  You can never undo a cancer diagnosis.  It stays with you forever.   I would feel uncomfortable saying a cancer was cured.  I don't believe you ever cure a cancer, you can only kick it into the background.  Perhaps the bu**er will return, perhaps not.  

But none of you are imposters, I hope you both keep posting. 

Hi Mmum yes I totally agree glad you understand. On the topic of this I watched the program on Julia Bradbury journey after seeing her talking about Cancer.

In hindsight maybe not a good idea but with a hanky or 12   I watched glad no surgery was shown as is normally the case.

But it brings it out  into the open & the more I see and talk about this b****r the better so that people understand what you are going through.

Thanks for your support & like I said more positive thoughts from me may help someone who is going through this.

Stay safe.

Mike

I had my left kidney removed 8 1/2 years ago and in the past six months the diagnosis is there is a recurrence of the cancer on my adrenal gland. Tail of the pancreas and after another CT scan a few months ago, there is now a lesion on my remaining kidney. 

at 74 I guess some people think that I’ve had a good innings but my family need me and I will stay around for as long as I can. 

it would be nice to chat with someone who has been or going through similar things. 
I wish you all the best

My husband is 79 and was treated for bladdercancer 6years ago Cancer has appeared in his right ureter Initially surgeon said kidney function not good enough for removal He used the term  good innings However a stent in ureter improved kidney function and he has had a scan at dept of nuclear medicine We see.consultant Friday 

I have said in no uncertain terms not to write my husband off on grounds of age He is fit we go to the gym and he cycles 

I've researched various options and in case kidney removal isnt on cards on Friday I have a list of options Removal ureter chemo carb treatment acouple of drugs and cryotherapy 

Hope this helps 

Wilbert