Saying 'hello'

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Hi, I'm new to all this, just heading to a CT scan tomorrow after an Ultrasound for something else (gallstones) showed up something on right kidney.  It's an anxious time, though we all know it's no good worrying till you know what the situation is!  I just wanted to say - I've been reading some of your posts and have found some comfort, as well as information, there - so good to know there is somewhere to reach out to.  Thank you.

  • Hi Wild Rose, We like to think we can be here when needed. Hope your CT scan goes well and there are no complications. 

  • Hi Wino, thank you so much for your good wishes.  Just the wait to hear back now. At least I got a very quick appointment for the scan.

    All best,

  • Hi Wild Rose, well at least thats done , hopefully it wont be to long now for the results. All the best

  • Thanks again, Wino.  I had a good chat last night with the Macmillan Help line, a lovely lady called Laurie who helped me to take a calmer view and among other things gave me a suggestion of the University of Virginia website about waiting for imaging test results - 10 tips to get through including talking to people (thanks for being in touch, it's great to have this way of being in touch with people), also don't assume the worst, all sensible things that you know are good sense. But it doesn't take much to be knocked off balance again.  Hope to hear today, or if not can ring tomorrow, a date with the clinic.  I hope you are OK yourself, getting through. All best.

  • Hello Wild Rose….such a fabulous name….we can all concur with the feeling of shock that a diagnosis brings and the worst part is all of the waiting around for results etc. You seem to be doing all the right things, contacting macmillan and posting on here.

    We are right behind you and we care about each other.

    Sending you a big hug,

    Jules xx

  • Dear Jules,

    I can't tell you how wonderful it was to receive your message the night before I was to go in for my results review.  I held your words with me for support.  Small and curable is what the doctor says so you can imagine the relief.   Not so small that just monitoring to watch for change would be an option but  not the 'worst case' imaginings that I guess many of us fall into.  So no immediate, panicky action but possibly a partial nephrectomy which I'm sure is quite daunting but 'small and curable' is what I'm repeating over and over like a mantra!

    It has been so brilliant to have the support of yourself and Wino.  It's made a huge difference to me over the past stressful days, so hugs all round!  I hope I can be helpful for others at some point too.  I couldn't speak more highly of the Helpline advisers - so much calm, helpful and empathetic advice - absolutely brilliant, and so easy to get through to!

    Many thanks, xx

  • Oh that’s fantastic news about your results. You must be so relieved. I am so glad my words brought you some  comfort, we do try to keep each other going on here and the fact that something that Wino and  I said helped is great news.

    If you do have a little dip then let us know. Blush Xxx

  • Hi Wild Rose

    My story is a "lucky" one - routine set of tests last September, UTI spotted/treated and ultrasound booked..."we've found something" that led to a CT scan and a tumour on the kidney found. Into Charing Cross mid October and partial nephrectomy done. On a course of Adjuvant Pembrolizumab (2 out of 6 infusions done so far) and the worst side effect (so far) is itchy skin.

    Not much to add at this stage but just to say hi, hang in there, and do use this forum as well as the Macmillan nurses - they are superb.

    All the best...

  • Hi Michael1793,

    Thank you so much for sharing your experience.  It will be good to have a better understanding of how things can go. The doctors will be having the MDTeam meeting on Friday so after that I'll learn more about what the possibilities are - partial nephrectomy was mentioned last Thursday but also ablation/biopsy could be considered.  Today I'm going for a chest CT scan. I panicked when they rang to make the appointment in case they thought there was something else but apparently everyone has it so the doctors get all the information when considering the case.  I also need to get a blood sample done but my local health centre can't take one till 21st February so I'll see if I can get it done this afternoon too at the Diagnostic Centre.

    In this waiting period how do people keep calm?  I've tried to keep busy, tried not to worry, tried to hang on to the doctor's words "it's small and it's curable" - I even read and re-read the definition of 'curable' (which I know perfectly well but I'm trying to make it feel real)  but still hard to keep stable and get on with things.  During the pre-results tense, sleepless wait a 111 doctor gave me a week's prescription of Diazepam so I have a few of those left but I don't know if I'll be able to get anything else.  I know it's not good to take D for too long.  Also, I confess to being one of life's worriers - which is not helpful to anyone and can be trying for others  so I try to keep at least some of it to myself.   Sorry to go on!  It's rather a grey day here so far but I hope the sun is shining on you.

    All best,

  • Hi Wild Rose

    My diagnosis was a bolt from the blue - nerve wracking to say the least. 

    It was the first major operation that I'd had - quite close to the operation I just told myself, "the problem has been found, you're in the system and trust the process/medical staff who do this sort of thing all day long". That worked for me. 

    I opted for the specialist's recommendation of a partial nephrectomy as opposed to a radical - overall that represents a 20% reduction in kidney function I gather.

    Yes, do ask re bloods while you're there - that's happened a couple of times with me and the people in that department have squeezed me in - after all, it only takes a couple of minutes.

    Keeping calm?? Tricky one as something like this is a major life event...I kept myself busy, got myself fitter to cope with the operation/aftermath but it's perfectly normal to be worried. This forum has helped.

    I hope things go OK for you and feel free to ask any other/more specific questions!