Struggling!

So I recently joined the forum having being diagnosed with a Kidney Mass in October 2021. In December 2021 I was told I was on the urgent waiting list for a Robotic Partial Nephrectomy and that it would be a 2-3 month wait. I am now almost at the 3 month mark and am being told that it is more likely looking like I will have my surgery mid to late April now, which will make it 5 months. I have tried going through PALs, I have looked into private (£10K and I can't afford it! Disappointed) and now I am finding it more and more difficult to just sit and wait. I feel like time isn't moving and am being given no reassurance whatsoever that my mass won't grow or spread by the time I have surgery. I am 29 (30 in September) and I just want to get on with my life. 

Right now I just want to curl up into a ball and cry. Probably a bit overdramatic but I am really struggling at the moment. 

  • Hello whatsgoingon, l am afraid all l can offer is sympathy., although l have found the PALS  route useful in the past. Glad you are having an op. wish l could have one!

    I was supposed to get a scan result yesterday but the radiologist has not converted it into a report so the Oncologist  who cannot interpret the scan photo will/can  not tell me what the result is. My case is urgent, if it wasn"t l 'd have to wait 18 weeks!

    I hope l don't sound too glib when l say try PALS again, also, and this has worked for me, tty complaining, by email to uour hospital trust's C/O, you will find their email address either via PALS or by googling your hospital name. And very good luck.

    My regards Adrian

  • Welcome whatsgoingon,

     I know it is such a worry when you get that diagnosis your whole world falls apart, everyone on this community have been in this position I know you can’t eat sleep or function,  Have you been in contact with the Macmillan nurse to see if they can help, I think covid has a lot to answer for.

    If I was you try contacting your surgeon and find out what the holdup is failing that see if your own GP can help you it would be no use me telling you not to worry as you will, any wait seems like a lifetime when you are waiting to have something done.

    Try to think positive and look after yourself I hope you can gets some results, I also hope you have family and friends who can help you, please let us know how you get on I will keep my fingers and toes crossed. Sandy

    Sandra 55
  • Hi Adrian,

    Hope you are keeping well, I am so glad you replied to what’s going on, I had a lot of problems trying to reply, I think you must of opened  the link.

    Regards Sandy

    Sandra 55
  • I,'m ok Sandy  just a bit miffed re scan. How are you?

  • Not to bad thank you, I start my new treatment next Tuesday so hopefully that will go well, I know what it is like waiting for your results and to be given and than they tell you they don’t have them, it is usually an extra two to three weeks with me hopefully yours will be sooner

    Take care Sandy

    Sandra 55
  • Hi Adrian, thanks for your message. Sorry you're still having to wait for your scan results, I completely understand how frustrating that feeling is- I was going to have to wait 9 weeks for my results, but managed to get it pushed 3 weeks earlier. I really think the waiting and uncertainty in all of this is the worst part! I really hope you get your results soon! *fingers crossed* 

    So I am still in the process of hearing back from PALs having contacted them last monday. They basically said it's now looking at April, but they do have meetings to review the lists on Mondays, so she said she will ask the consultants for me whether they think they should operate on me sooner. So fingers crossed they will make that decision! Otherwise I'll have to go back again soon. I just wish I could afford to go private and get this all over and done with!! 

  • That's good Sandy, wishung you all the best. Adrian

  • Thanks "whatsgoingon" l have a new date next week. I actually got a reply from my hspital trust's Chief Exec. pushing matters on!. So.... in your case find out who you C/O is and send them an e-mail. Keep safe. Regards, Adrian

  • Hi Sandy, 

    Thanks so much for your message. This community is wonderful and is so lovely to be around people who understand how I feel.  In the rest of my life (especially work) I feel like I'm meant to just carry on with life like everything's normal and I can do it for a bit, then I remember what's going on again! 

    My current hope is that on the Monday meeting the team decide to operate on me sooner. My GP (reluctantly) said he will refer me to another trust (shouldn't affect my current care) to see if they can get me in quicker. But it doesnt' feel very hopeful at the moment. 

    Like you said, I think I just have to think positively and try and find a way to get through the next ten weeks if that's how long it's going to be! I will let you know how I get on, thanks again for your kind words, it's really really appreciated!! Jess xx