Unexpected recent diagnosis

Just a little update that I had my pre-op assessment yesterday. It went as planned, just a whole heap of questions plus a few physical checks. I managed to embarrass myself, as per usual, when seeing the second person (it was in 2 parts) for the physical checks.

He was quite specific where I put my bag and wasn't satisfied that I'd put in on the floor! "No not there, up here". I didn't know he meant though - Hung from the ceiling maybe? Turns out he meant the bed. WHY?! Did it matter? Teehee.

Then he checked my height and then told me to step on the scales. Well there were no scales of any type I recognised but there was a square thing next to the height measurement thingamie. So I took a gamble and stood on that, nearly falling off as it's the first time ever I've worn glasses out of the house and the weird magnification threw me off balance!

He did an ECG too, which I wasn't expecting. I'm very self-conscious and a doctor or nurse asking me to take my top off fills be with dread. I just did it quick and had no time to worry, and it was done in literally seconds. Strange, I thought it would take 10 or more minutes.

They also did yet another blood test, and they told me they need me to go for another one before the surgery, 2 to 5 days before. I have to go to one of 2 hospitals though, both which are a way away, so that's a real pain in the butt.

That's all for now, thanks for listening. 

Glad it went ok! Thank you for sharing this with us all. 

Just a few more days before my surgery. I've been doing too much reading of so much negative information that I've driven myself potty. Part of me is convinced they'll find the cancer has spread, as it seems so close to that based on how large the tumour is and the fact it's in a lymph node and adrenal gland. 

They even told me that they can't be certain it hasn't spread until the surgery. I've read that if it has spread, it's stage 4 and my prognosis is very poor. What if I wake up from the anesthetic and they tell me they didn't remove anything because they found out it's already spread? 

It's a shame I haven't been given a CNS who I can easily speak to who could help me relax and give me more information on my specific case. All I have is a phone number to leave a message on, but not at Weekends. I want to say more about that but I don't want to criticise someone in public like this.

I have nobody with any experience to talk to face to face, there's only a group nearby who are more about activities. I'm really not interested in that though. I just want to talk. No Macmillan centres or Maggie's anywhere near me either.

Hi again BeefyMoo

I read your post in The Room, and this one, about the support nurse system. I'd like to tell you about me and my husband's experience of this.

4 years ago, my husband's appendix perforated, with no warning. When operating, they discovered he had the very beginnings of bowel cancer. Over the last 4 years, he has been clear of cancer. He has been able to phone his named nurse whenever he's been worried about anything, and they respond quickly. He's even had phone calls out of the blue, asking him how he is.

I am being seen AT THE SAME HOSPITAL. I have stage 4 incurable cancer.  I have 3 named support nurses in my department, urology. All 3 work part time. Sometimes all 3 are working on the same day. Sometimes all 3 are 'off' at the same time. Where is the sense in that??

I have never got straight through to one of the nurses if I've phoned up. I've never had a phone call out of the blue. 

On a recent survey we took part in, my husband gave his support as 9 out of 10. I gave mine as 2 out of 10. 

Why can this difference happen in the same hospital? It's because bowel cancer is much more common than renal. They are a bigger department with more staff.

If you do want support from your named nurses, you will need to leave messages. They will phone back! It is their SYSTEM that you're not happy with! Your 4 named nurses are probably brilliant, so give it a try!

Over this weekend, you could leave a message on their answerphone. You'll get a phone call back on Monday or Tuesday. You could write down what you want to say before you phone.

Organising face-to-face support is more difficult. You may have to travel to find this. I have to, because I live in a remote area in Scotland. It is worth it though!

I hope all goes well for you on the 5th.

Best wishes 

Kate

Hi Kate,

I know it's their system. I haven't criticised the staff at all. I know they'll call me back but the paperwork I have makes it sound like it's a question/answer service. Also like I've said, it's very hard for some people to leave messages on a phone. I also wouldn't want one particular nurse to call me back after experience with them face to face. 

If I need to travel to meet with someone, I may well do. Without a car though and several hours one way journey time, it's not that easy. I'll look more into what's on offer after my surgery, depending on how it goes.

Thanks for your good wishes,

Geoff.

Hi Beefymoo

Just wondering how you are, as I think you had your operation yesterday?

Hope it went well, and you are feeling OK.

Best wishes

Kate

How are you doing? 

How are you feeling? 

Hi Kate and everyone, 

I'm just home from hospital. Surgery took 5 hours as it was converted to an open procedure cos of the size of my kidney. I'm quite uncomfortable and have barely even looked at my phone. I think it was successful but it's honestly all a blur at the moment. 

I'm home and in bed which is such a relief. I'll update with more details when I know more. 

Thanks for your kindness towards me. It's been a big help.

That’s great you’re now home and can start your recovery. Sorry you had more of a procedure than planned and hope you feel more comfortable soon. 
I have my kidney removal this Saturday… I’m working from home this week and isolating. X