Newly diagnosed

Hello Byron and welcome to our group. Whilst everyone is different, we all do understand some of how you are feeling. You will find friendly people on the site and whilst we may not know all the answers, between us we have experienced most things.

I do feel for you in the situation that you are in. I too had a long wait for the MDT meeting and the time seemed endless. I just tried to busy myself to distract myself but at times it wasn’t easy. Do post on the site to keep everyone updated how you are.

I had my right kidney out 6 weeks ago and all seems to have gone well and it’s good to have come through the other side……..

Sending you a big hug, Jules

Hi Byron,

Welcome to the group - I don't think any of us expected to be here!

Sorry to hear about your diagnosis. I am now 5 weeks along from a similar start to yours. I had an ultrasound (for separate issue) which showed an incidental kidney mass which was suspected to be an RCC. This was followed by CT which confirmed. 

Local MDT was 3 weeks after diagnosis and now I am waiting for SMDT (hopefully next week) before treatment decisions can be made 

I've had blood tests, staging CT and MRI (for a different incidental finding!)

Trying to stay calm whilst preparing for treatment options. I found working helped initially(trying not to think about it) but have benefited from being off this week as I wasn't sleeping well. I feel more ready for the next stage now.

I recognise the 'not sure how I feel' - I'd be mostly ok and then it'd hit me. I find that writing stuff down helps. This can be anything from a list of questions for the consultant to a rant about an insensitive colleague (better on paper I think!!)

Good luck with your journey

Keep posting

Smiles

Thank you for your responses and sharing your experiences, it has given me comfort to know that others are going through the same feelings as me obviously in different stages and are feeling kinda positive about things. Let's hope that we all make a full recovery, I will post updates as I go along. I think it's starting to hit me now, still haven't told my children though (5 year old and a 10 year old) don't know how to. Anyway thank you for the kind replies 

Hi Byron, it is great to know that you already feel a bit of comfort being on the site  

It must be difficult for you to contemplate talking to your children. 
I don’t know if you are aware of this, but MacMillan have produced. A booklet about talking to children and teenagers 

Here  is the link.

https://www.macmillan.org.uk/cancer-information-and-support/stories-and-media/booklets/talking-to-children-and-teenagers-when-an-adult-has-cancer

Hope that this helps,

Jules x

Just a quick update, still waiting for the MDT meeting feeling like I'm in limbo, was given morphine today for pain relief from arthritis as I can no longer take anti inflammatories due to the tumour, now it feels more real 

Hi everyone, just a quick update, firstly the MDT was missed, it was finally done after 5 weeks. Went to see the consultant and I was told I was going to be referred to the royal Gwent hospital in Newport, that was 3 weeks ago, I was told by the consultant that I would hear from them within a week, in the meantime I was admitted to hospital for heart failure with reduced ejection fraction, this was originally the reason why I had the kidney ultrasound to find out why my BP was so high, that's when they incidentally found the mass on my left kidney, anyway I digress it turns out that my referral letter to the royal Gwent never arrived so I'm still stuck in limbo. Still not heard anything will let you all know when I get anymore updates, but this is constantly on my mind, my mental health seems to be suffering together with my home life and work life.

Thanks for updating Byron.

Shame it isn't to tell us you're progressing down the road further.

The 'limbo' is a wretched place to be. I found my mind running riot and keeping it together, whilst i managed it, was difficult.

It helped me massively that i paniced myself into thinking i only had a year or so to live (I didn't tell anyone i felt this way) and so bought an old cheap caravan and proceeded to 'do it up' quickly so we could get away more and make some memories. All a bit melodramatic i know but it did so help to keep my thoughts diverted for the weeks until my 'plan' was formulated and relayed to me. It seems so funny now.

I don't feel i've been much help here but i did just want to let you how i felt while waiting in 'limbo'.

Hope things speed up for you soon and you get going with some treatment.

All the best...Del.

Oh no, how terrible and frustrating for you.  We've heard of referral letters being "lost" before.  Do you have the consultant's name you are being referred to?  If so, can you phone their secretary and check they've received it, chase-up your appt etc?  

We've all experienced this black hole in between knowing there is a problem and the next investigation or meeting.  It is the worst bit.  It gets better once you meet your consultant when you should feel things are really moving forwards with a plan.  

Hi Byron. So sorry to hear about your journey into limbo land. It’s the not knowing what’s happening that is the worst time. I was very lucky 17 years ago and only waited 5 days from diagnosis to operation. Have been absolutely fine until March 2022 when secondary returned and I had surgery, 5 rounds radiotherapy and now on infusion. I am resting for a month as keep falling over and sleeping 20 hours a day. A new care plan is being put into place for me to resume in 3 weeks, I am in and out of hospital and only just came home yesterday after another week as inpatient. I really hope that things improve for yourself and your recovery starts now. Take care of yourself. There are such wonderful people on this chat who really don’t deserve all this crap. We will continue to support one another. I am not on any social media but am glad to be able to be here. All the best Aileen xx