Sooo frustrating….

This topic contains 9 replies, has 5 voices, and was last updated by  Harmony 6 years, 9 months ago.

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  • #124041

    cygnet
    Participant

    Apologies for mini rant which follows… I know I’m not the first & -sadly- expect I won’t be the last but…

    As the time for my monitoring appointment approaches, I do as asked & go to the hospital for the necessary blood tests. When I went I  felt something was missing – & asked them if I could check what was being done? “Definitely NOT!!!” I was admonished… to which I politely replied, ” Sorry but I just don’t want to get to the clinic & waste everybody’s time…”

    I’m learning not to get too jittery pre appointment but we all know how it is…. And today, at the allotted time, I get called into see my consultant only to be told that within the bloods the paraprotein test wasn’t done so the one number I’m/she’s really interested in is unknown!!!!

    D’oh – as Homer Simpson would say…. So off I go to redo my ( now marked urgent in all fairness) blood tests & I am told I will get a phone call in a week or so.

    Rant over …… mindfulness & deep breathing tested….

    Let’s all keep” dancing in the rain” as the saying goes my friends

    C xx

    #124042

    cygnet
    Participant

    PS Sorry but I have to rant to you all virtually as apart from my husband /GP I haven’t told anyone else about my “mischievous blood”. And to spare his stress levels I’m going to be blase about it when he comes home… 🙂

    xx

    #124044

    Anonymous

    Keep ranting at us it’s fine…mine due in a month on the same date as last year when hopeless consultant told me I was smouldering but might not be …so hoping that it  goes more smoothly…I’m lucky I get to have them done at local GP so I see what’s on my form and even what colour tubes they should be using and I know results before consultation in a strange way it gives me peace of mind before appointment which will be on same date as last year when I saw professor Cook who actually put my mind at as much ease as he could….it’s a battle of wills with our minds isn’t it so ranting is very much allowed I’m sure 🙂

    big hugs Helen x

     

    #124045

    graham-c
    Participant

    Having a quiet ‘rant’ is good for you and I know how you feel.

    In Leicester they devised a wonderfully bizarre system for notifying patients of results that didn’t work, created confusion and didn’t actually inform me of results. They termed the phone calls ‘appointments’ so that when i received a text message confirmation of an ‘appointment’, without any clue as to whom it was with, I was in a panic that I had missed something. I didn’t always get the calls and, when I did, the most I was told was ‘okay’ which didn’t reassure me.

    Sometimes I get a copy of the letter with results that is sent to my GP, but not always. In the end I decided not to allow myself to get wound up by it, and so when I need results I make ‘Subject Access Requests’ to the hospital which cost £10 a time, and I get the full print out of blood results.

    If anything that means that I am better informed than the Consultant/Registrar and considering that my eGFR is in a continuing death spiral without anyone noticing, it’s £10 well spent.

    What any of us seek is reassurance that there is nothing to worry about and the absence of results is the worst option.

    My next appointment at Haematolgy is the middle of October and my blood test will be carried out at my GP surgery three weeks beforehand, so there’ll be no excuses for not having the results – I hope. The point is that I can control my concerns a lot better if I know the results, even if they are adverse. If you don’t know it’s human nature to think the worst. If you don’t get anywhere as a last resort use an ‘SAR’ to which all hospitals have to respond by law. They will have the procedure on their website.

    #124046

    stanley-1960
    Participant

     

    Hi C,

    You are totally right to have a rant. With the worry leading up to your consultancy for them not to have a key result is simply not acceptable. My experience while going through therapy and waiting for results was PP readings would not be available with bloods taken on the day. So i went to my local chemist as directed a week before the consultancy to have bloods taken. They were still not available on consultancy day (a complete waist of time). I now have to have my bloods taken 2 weeks in advance to ensure the paraprotein element is available for discussion at consultancy. You are not alone.

    My rant over.

    Best regards,

    Stanley

    #124112

    cygnet
    Participant

    Hi All

    Thanks for your kind words – my consultant rang me yesterday with my pp result as they’d re-done it as ” urgent” . Now I can smoulder on until January for my next appointment which feels quite good as it is next year 🙂

    Helen –  feeling for you in this lead up period & just a thought… I decided  this time I would manage my pre appointment jitters by marking each of the 10 days leading up to it with a  treat. Nothing massive – sadly I’m not rich enough…but just a little something to brighten up my day.  ( eg my favourite coffee in Costa, a bunch of flowers  – that sort of thing.) It did seem to help to take the edge off it & it did seem to help to stop me dwelling on if, buts & maybes too much.

    Love & hugs,

    Cxx

    #124115

    Anonymous

    I like the ideas of little treats each day once I’ve had the blood tests Costa sounds perfect I’ve just received a gift card for my 50th birthday… Having chatted with family I also thought about trying to do a little craft project each day that I could give to charity to take my mind off it …as all us smoulders know we are so lucky to be monitored and picked up sooner through this but it’s always there and some days I wish didnt know and could just be me again …creating a new version of me is alittle harder than I thought it would be …but I have come along way from the utter despair I felt at this time last year thanks to support from everyone on here xx

     

    #124176

    Harmony
    Participant

    I’m so with you Helen!

    #124197

    graham-c
    Participant

    I like to think that I’m fortunate that the condition is being monitored, particularly when I read posts like the recent one by a person who only discovered the illness when they suffered critical spinal and kidney damage. I’m sure that there are many people with MGUS who don’t know it and are at risk of a very nasty shock.

    #124288

    Harmony
    Participant

    Very true Graham -I have to remind myself that we are lucky to be aware even though the word ‘lucky’ feels highly inappropriate! A
    bit of a double-edged sword really because I’d also like the carefree freedom of not knowing, of being a ‘normal’ once again!

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