Kidney tumour with adrenal metastasis

I know the feeling so well. And I really sympathise. I was tootling along happily at 73.. no issues, no meds. Sudden A&E admission at 3am.. vomiting, pain, blood! Scans revealed large tumour in kidney and small one in bladder. Entire kidney removed within a couple of weeks. Bladder tumour also. It took me several months to begin to recover from that kidney op. Exhausted, drained of energy, abdominal pains, scar pains, numbness etc. It took time but now I feel fine. Other kidney functioning ok. I went to a Functional Medicine doctor who did copious blood tests that revealed all sorts of deficiencies that NHS tests simply did not flag up .. iron, copper, b12, zinc, and about 10 other things. And cortisol issues and more besides. On a regime of supplements, drops and dietary tweaks I now bounce about like the Duracel bunny! At my 6 month checkup almost a year ago they discovered new and aggressive tumours in my bladder (my kidney tumour had been "bladder type cancer of the kidney") and now I am undergoing BCG immunotherapy. Not too bad at all. All this is to say a) be patient, it does take quite a while to recover at our age but you will! b) be kind to yourself, don't push things, enjoy taking things easy c) have a good look at diet and possibly supplementation to help speed recovery. d) trust your consultant and go with their advice..hand over to them and don't google too much. I felt awful in those first months of facing the unknown, the worrying, the discomforts, the not knowing what is normal, and generally adjusting to my new way of living ... but after a few months it all settled down and 18 months on I am genuinely leading a pretty normal life, feeling full of energy, doing everything I used to do and very zen about what the future may hold. I tell myself frequently how lucky I was to get 70 years without problems. If you'd asked me a year ago if I'd feel this positive and healthy in a year's time I'd have assumed things could only go downhill.. but that has not been the case at all.  So while you are feeling very disorientated right now please trust that it really can get better and you will adjust. This forum is great for so many reasons. Stay with us!

TillyV thanks so much for this, I feel encouraged by what you’ve said! It’s very reassuring to hear that you are back to doing all the things you used to do after everything you’ve been through. You have such a great, positive attitude and I’ll try to do likewise! I have also been thinking about nutrition, have had no advice from the medics, but I’m going to look into it, sounds like the supplements and dietary tweaks are working very well for you. 

The NHS docs seem almost entirely uninterested in the effects of diet..they get so little training in it sadly. They are all brilliant at their part with surgery and ongoing treatments.. but I so wish the whole approach was more holistic. That is what Functional/Integrative Medicine is about...looking at the individual and their unique system and needs through blood tests and DNA. Another thing I learned in the whole experience was to self-advocate, not to fear pushing them a bit, asking questions, insisting on being seen/heard, chasing up checkups that should have been arranged by expected dates. It can be done with smiles and appreciation (never rudeness or being demanding of course!) .. I found throwing myself on their mercy emotionally helps. Expressing my concerns and saying it is upsetting me a lot with the worries. They usually do all they can to help out. Use your cancer nurse team..that is part of what they are there for so don't hold back.. I certainly found a lack of any follow up and minimal post-op advice very surprising and worrying. My GP has not once been in touch since my op...even though technically we are handed back into their care post op.  It is a very different world to our younger days. My sons are now in their late 30s and I remember our GP popping in to check on them with measles etc. So.. stay strong, don't be fobbed off, ask all the questions you need to. And reading others' experiences in this forum helps a lot to get an overview of the many different ways people manage and experience these processes. All the very best. Stay with us. X

Thanks for this, it’s really helpful. Yes, I too remember the days when the GP knew the family and made home visits! Surprisingly, I did get an unexpected call from a nurse at my GP surgery - she said they are aware of my diagnosis and she was calling to ask how they could support me. I will definitely take them up on that! 

Wow! That is a real positive. So glad. And absolutely don't hesitate to take them up on it.