first time post - kidney cancer

LHi

I am really sorry to hear about your diagnosis and I can imagine that it was not one of your better days. What a horrible shock. It’s bad enough hearing this when there’s someone with you but all by yourself? Not good. 

First of all, what you are feeling is completely normal and no, you are not losing the plot. The period between hearing the diagnosis and waiting for scans etc and for treatment to start is really tough. Lots of people report feeling better once treatment is underway. 

This community is a great place to write down how you feel. There’s usually someone around to say “I know what you mean” and realising that you are not alone is, in my experience, very comforting. It’s also a great place for getting your questions answered, even if you don’t yet know quite what they are. 

We do have a group for people with kidney cancer. There are also various groups to find emotional support more generally. 

This is the kidney cancer group: https://community.macmillan.org.uk/cancer_types/kidney-cancer

This is a list of various experience groups: https://community.macmillan.org.uk/cancer_experiences/

Do check out the information section on the website too as there’s lots of useful stuff there. 

How old are your kids? I suspect they are adults given the user name you have chosen but if they are younger it’s worth checking out the info on site about talking to children and teenagers. 

I wish you all the best 

Hi alfiesnana, a second welcome to the community.

I'm from the Kidney cancer group. Do come n join us then I n others can answer over there. You might also want to put a bit in your profile to save u repeating yourself?

I'll reply further when it's not the middle of the night!

Just to say tho that kidney cancer's a slow grower compared with other cancers. Often surgery sorts it but there are new drugs being developed all the time too which many of us are on.

Hi alfiesnana,

I am in exactly the same position as yourself I was told I had a growth while getting unrelated tests done and have been told that they are going to remove my left kidney but like yourself I have to attend another ct scan tomorrow to see if it has spread.

This has all happened in a matter of weeks and i am going through every emotion thinkable although when i am around others I tend to be very positive to them but underneath im not so positive.

I am hoping by joining this it will help by chatting to people who are in the same boat.

You are definitely not losing the plot though !!! 

Hi there,

I’m new here but I just spotted you post while trying to figure out around this site, I’m 36 and I had my whole kidney removed after a cyst the size of a Watermelon was attached to my kidney, they also  removed a lot of my bowel, it was a open surgery because of the size of the cyst. 

it’s normal I think to be laughing then suddenly hear a advert on tv about cancer then only to snap back to reality you have/had cancer. I still haven’t come to terms with it. I was so angry at first I took it out in maybe way I shouldn’t but I needed to get it out of my system. 

I don’t really know why I joined this group either but that’s the other side of my mind not coming to terms with the fact I had cancer

I’ve already stopped and started many posts on here wondering what to say about my cancer or where to start. 

Hi and a welcome to you.

This cancer thing is very confusing, I have been on my cancer rollercoaster for over 20 years now and I still don’t have all the answers, but one thing for sure, talking with people who understands helps.

We do have lots of support groups that are Cancer specific  and also ones that are general Cancer experience groups, have a look through and once you feel you have found a place to stop for a moment - just follow the group links, hitting ‘Join the Group’ tab just under the main group name, then go to the 'Start a Discussion' tab and set up your own Discussion and introduce yourself to the group - you could just copy an paste what you have in this first post.

You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.

Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

All the very best.

Hi Tim36, I'm from the Kidney cancer group n as I said to alfiesnana you're more than welcome to join us.Tho I'm sorry you've had to join the " club" none of us really wants to be part of.  

 You might also want to join the Bowel cancer group?. 

Btw, sorry if this overlaps with what The highlander said  

Hi runner68, Do join the Kidney cancer group then u can connect with others in a similar situation to yourself

Can u also put a bit in your profile, so others know where you're coming from, as it were?

.U don't need to b positive around us, just b yourself - warts n all. There's even a group - The Room - if u want to just vent.

Do let us know your CT scan results.

Hi , I am in the exact same situation as you Alfiesnana, My cancer is in my left kidney , I’ve had three lots of scans and am now waiting to see , like you , if it’s anywhere else. I didn’t and don’t know how to feel . Even the Consultant asked me if I’d understood because I had taken the news “ remarkably well” . I just replied it is what it is, let’s get it sorted. Not brave just pretty dumbfounded. 

           Now I just need to know what’s next , it was only two days since the last CT so I guess it will be a little while more.  I never know what to ask so am gonna start making notes etc. I am still numb but not gonna give up no matter what happens, Neither are you my friend x

Hi Dotty2018, I'm from the Kidney cancer group. Welcome to the club nobody really wants to join. 

May I suggest you come n join the Kidney cancer group n also put a bit in your profile so ppl know where you're coming from. You won't then have to keep repeating yourself.

Good idea to make notes. If u can, it's also good to have someone with u at your appointments, to write down the answers to any questions u might have.  My trusty husband's been doing that for me for years now. Yes, kidney cancer' s much slower growing than many other cancers.

Do let us know the results of your scan n what your treatment plan is