Still waiting!

Hi Carol, good news about the consultation! Horrible about the transport and lack of support there! surely they would realise that you need support going through this? And it's not like you chose to go to london. Hope it all goes well- i'll keep my fingers crossed that they're helpful for you! Thinking of you and sending positive thoughts xx

Hello,

it is tough. You are right. I don't feel at all comfortable chasing people up, I'm cringing inside but I know it's for my partner's good, so I do it but I hate it :-) I've had the opposite of the seven dwarves in dealing with different CSNs: snotty/useless/new here don't know/chummy but useless/helpful/very helpful and get it done - that was last week's. I'm sure you've met some of them too!

I've gone the PALS route. Automated email reply to emails and answerphone messages:  'we'll get back to you in 4-6 weeks' Grrrrr! The appointments have all come before PALS have even replied. In fact, last summer, my partner had had his surgery before PALS rang us :-) It's excruciating but with a previous hospital, PALS were fab and helpful. 

I honestly feel your frustration. 

The scan went smoothly yesterday, thank you. The team are meeting on the 8th Feb and my partner has a phone appointment on the 11th so not long until we find out more. We wait, we wait !!!

I think writing a letter to the consultant helps. I don't think they get many paper letters and I've had replies to any I've sent, they have either written back or telephoned. I usually outline the situation - how long the wait has been, where we're at (ie had a scan waiting for a surgery date) and ask them whether they can give us a timescale or date. It won't hurt and it's less scary than ringing!

I do wish you all the best. Carla 

Thanks Jess. To be honest it wasn't nice. I don't want to put off anyone having a biopsy and was told that mine was different as it is close to my liver  and they had to go from the bottom and under a rib.They still had difficulties with it. The doctor performing it was new and doing so under instruction. However when I got back to the ward they couldn't have been nicer to everyone on there. I had to lie flat so didn't need anything other than they did my observations....... but they kept asking if I was warm enough, wanted a drink etc.

I have now completed the biography part of my profile.which explains where I am.

I am so surprised by the advice and support from people on the forum. Although none of us want to be going through this it's been reassuring to hear the advice from others and know we are not alone.

Sounds a good time for you to focus on you..... and very positive of you trying to lose weight. I am tackling some of what I refer to as Covid chub myself!  I hope that you find peace in this time of waiting.

Sending you love too xx

Hi Again,   Still going strong with the immunotherapy drugs, getting another session next week :-) 

It went OK telling the kids, although hubby suggested I didn't communicate the seriousness of it all. They both asked "did they detect it early?" <no>, "will your hair fall out?" <no> and "we've seen cancer in films" LOL.  Eldest (he's 20) decided I would be fine, said I should have got critical illness cover (he's just bought a flat so bought a policy himself lol) and youngest (17) has started googling, returning with follow-up questions.   Managed it all with no emotion!  Next session is my sister and her hubby on 13th Feb shortly followed by my parents.

You're very young for this club so managing to carry on is impressive.  Definitely the right strategy.    Love to all, Claire xx

Hi all, me again!  Had the consultation at the Royal Free last Wednesday - kidney will be coming out on 15 March along with gall bladder (which has a cyst in it which was picked up on the CT scan - consultant said it could become inflamed so best get rid while they're "in there"). Was struck by the difference in professionalism between Royal Free and my local hospital and even though it's hundreds of miles from my home feel confident that I am in safe hands. Sending love to all. Carolxx

Hi Carol, I am so relieved for you that you have your date….and just as important have confidence in the team at the hospital. It must be a relief for you.  Sending a big hug. Jules x

Brilliant!  All sounds so good, and you sound pretty pleased with it too - I detect a positive tone!  :-)

Hi Carol, That's amazing news, so glad they have seen you and can get you in fairly quickly. Very happy for you :) xx

Hi Carla, thanks for your message! I finally went the PALs route on Monday, especially after finding a document which stated that I should have had my Partial Nephrectomy within 1 month. As it stands I was told I needed surgery on 6/12/21. I just feel like it's never going to happen. Felt fairly confident that going to PALs would help move things along, but I got a call last night from someone in Urology who was contacting me because of my query. She was nice but again said that my surgery was now looking likely to be mid to end of April, so what I was initially told would be a 2 month wait is now looking at a 5 month wait. And even then they're saying it's dependent on  bed availability. I feel like I'm going insane waiting now! 

Hope all is going well with you and your partner. 

Jess :) x 

:-( what a nightmare for you.  I don't understand why a Nephrectomy is not considered to be a priority procedure.  Sending hugs.