had a radical nephrectomy awaiting chemo or immunotherapy

Hi Mythicdreamer. 
Welcome to out community. You’ve definitely come to the right place for support as there is no reason that you should have to handle things on your own. Family and friends are the closest to you and are understandably concerned and equally scared but cannot possibly with the best will in the world fully understand how you are feeling. Everyone on this forum understands even though not necessarily experiencing the exact same symptoms or treatment as you. 
You’ve already come through the biggy by having the Nephrectomy. How are you recovering? It’s good to hear that mets haven’t been found and planned treatment sounds as if it’s precautionary. I personally haven’t had any chemotherapy but there is bound to someone in group who has and I’m sure they will reply to your post. 
In the meantime if you’re feeling well try to normalise as much as you can. Keep doing the things you would normally enjoy. Maybe if family see this they will be a little less scared. 
I have found it doesn’t help to preempt things or overthink and research what may happen. It’s not easy but try to just handle things as they occur rather than scaring yourself with nasties that you may never experience. 
Keep posting on the forum to update us, ask for advice or just to sound off if you need to. Nothing you say will surprise or shock us. We all need a sounding board sometimes. keep positive and keep well. 
Rojan

Hi Rojan

thanks for the reply, I am recovering pretty well am 5 weeks post surgery now and my scar is healing, its huge but considering what was needed to be done im handling that well, I am fatigued alot more than I expected and am getting stronger each day, am trying to walk every other day as I build my strength up, learning to listen to what my body says, since the second week home, I over did the walking and flaked out pretty much immediately (my mind says lets do this, my body says not likely right now....that's a work in progress).

I put that down to post surgery recovery, since its a pretty invasive procedure and my body is adapting to having the one kidney, I am off of researching as of now, I will certainly deal with chemo or immunotherapy and its side effects as they come, as I have scared myself reading too much I guess.

I have found that my sense of humour has returned, I don't know if that's a mechanism to cope with what I have gone through but I have found my outlook on things has changed, and yes my family is trying bless them but they don't understand a great many things and can be smothering in their need to support me at times.

I am certainly going to try and find a local cancer group to try and connect with as well as I do feel I need to talk to people who are or have gone through what im going through.

It certainly is a learning experience and life changing and I don't take anything for granted now that's for sure, but I am determined to fight no matter what and live my life and do the things I put off, and learning to reach to for support which is new for me but Im now understanding that I cant do this all alone

Hey! Your journey sounds very similar to mine so far, though I do have fairly notable mets, so you’re one up there!

Radical nephrectomy leading into immunotherapy. It’s terrifying I agree!

For what it’s worth I started immunotherapy early this week, and so far it’s been….honestly absolutely fine. Very early days I know, but the fear was much worse than the reality of it so far.

For me, I find it best to just act as normally as I can. My body definitely tells me when I’ve had enough and at that point I’ll have a good rest, but overall I’m doing a lot better this way than my initial attempts at trying to change everything to accommodate the illness.

My outlook on a lot of stuff has also changed though. I’m getting a lot more done that I planned to do “later”….just in case. Some things have become a lot less important, other stuff more so. Just do your best and don’t try to force anything is all I can say.

Good luck :)

So happy you’re doing ok. We’re on very similar paths but I’m a year in front of you on immunotherapy. Keep your head up and keep striving. All the best. 

Check to see if you have a Maggies in your area Good place for face to face support groups also I’m sure Macmillan will be able to provide you with local support groups  

thank you for your input, I certainly feel more ready for this, I will certainly be reaching out to my local Maggies here to connect with others, it took me a moment to reach out on here but now I have it has put me at ease, it really does help having people who understand whats going on with this disease, and with whom I can relate, thank you all so very much, I know we all got this and are moving forward.

An update, I have my call with my oncologist on Tues 12th, to discuss what treatments, chemo or immunotherapy, Im not handling this well at all, I am so scared of all the unknowns, I put a brave face on for my family but im breaking down every night, I feel so overwhelmed by it all, my family says I can talk to them about it but they are elderly and its hard to explain how I am really feeling when all I want to do is cry. Everyone keeps telling me how brave I am, and yet I dont feel brave, im in turmoil and processing all of this just gets me down even more

Hi Mythic Dreamer

Is it a phone call appointment, or a face to face meeting you're having?

When I was in a similar position to you, I prepared for the conversation by having questions written down, and I was able to have a friend with me at the appointment. She wrote down what was said, and also checked that all my questions had been raised. It may not suit you to be as 'clinical' as this, but it may help you to focus on what you're mainly concerned about.

Writing down your questions may help you to take the 'emotional' out of it, so you feel calmer, and less overwhelmed. Your conversation with your oncologist on the 12th will give you a treatment plan, which hopefully will give you some clear goals, and support. Do you have a named support nurse? 

I hope all goes well for you on the 12th. Sending a virtual hug!

Hi Mythicdreamer, 

I am not quite the same as you, but had a radical nephroureterectomy and bladder cuff back in April, I just wanted to let you know I had neoadjuvant chemo as cancer too big to be removed. I had three cycles of Gem/Cis which worked and allowed surgery to go ahead. Chemo is tough but definitely worth it, there are so many side effects listed but you rarely have too many, mine were mainly nausea and metallic taste, but  your oncologist and CNS will advise and support with meds change if required. 
I recovered well from surgery and have just been to Cornwall walking the cliffs with my one kidney. Am awaiting results of my first contrast scan 3 weeks ago, and if clear will then go on the surveillance cytoscopy programme. 
I wish you well with your treatment whether it be chemo or immunotherapy, just try not to worry too much x

Firstly thank you all for your messages, it really helps me to know there are others that understand the path we are on, i am so very grateful for the input.

I had a telephone consult today, discussed the results etc, my consultant wants a ct and blood work but wants to start me on 6 weekly infusions for the next 12 months on Pembrolizumab, im in an intermediate risk group apparently and she said i could wait and see and just have ct scans and see if anything happens, but im of a mind to get ahead of this and stop anything from kicking off.

Have been in tears most of the week getting myself in a right tizzy over this but now, knowing whats going on has helped, though im still processing I know I am going to rearrange things in my life and reassess a great many things but Im not afraid of meeting anything head on now, bring it on, im not going to back down or stop.