Advice please, don't know what's happening or what to do

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Sorry this is long, but here's my story so far

I had routine bloods in January, docs phoned 3 days later concerned that something was high, sent a week later for Ultrasound, docs rang with results saying there was something on the kidneys and liver, had CT done 2 days later,  then an MRI with dye. Had appointment with kidney specialist who said cysts on kidneys but ok, but concerned about liver, had more bloods done, then appointment came through for appointment with gastroenterology a day later. Sat in consultants room, on 5th May, he grabs a nurse, I hear him say can you sit in whilst I deliver some news. My brain turned to mush, went numb and only heard him say they've found something worrying on liver but more concerning is something they've found on the pancreas, I asked what are the chances it's cancer, i think he said high but can't remember I the  had another MRI with dye then bloods and referred to Liverpool Aintree,  I've heard nothing since then, so I don't know if it's cancer or not, I rang that consultants secretary who said Aintree received the referral on 15th May and they will have an MDT meeting. Ive had a dietician ring twice to check i'm eating ok  but I haven't slept since, my mind is overthinking and my anxiety is through the roof.

Is it normal to be left this long not knowing when everything happened so quickly at first? I feel I'm being kept in  the dark, will I get a letter or phone call?

Thanks in advance 

  • Hello  

    No need to apologise at all. Thank you for taking the time to talk us through what’s been happening. I can hear how worrying it is feeling, waiting to find out, and how much you have been through since initial tests in January. Things sound like they are feeling very overwhelming. I am really glad you have got in touch.

    With you wondering what the usual process would be: if it is normal to be waiting this long following everything moving so quickly at first, and whether you would usually receive a letter or a phone call, it sounds like it would be helpful for you to have a chat with one of our Information Nurses on the Support Line, as they are available to support with general medical questions. To speak to them, you would just call the support line on: 0808 808 0000, or you can speak with them via web chat. They are available 8am to 8pm, 7 days a week.

    You mentioned feeling incredibly anxious with your mind overthinking and struggling to sleep which sounds incredibly tough Lou70.  Who is supporting you just now may I ask? Have you spoken to anybody about what you’ve been going through? So many people share with us that the uncertainty of waiting for test results can feel such a difficult experience to cope with. It’s understandable that your mind would be overthinking, trying to make sense of the situation, however this can be an incredibly distressing and exhausting process. I am really glad you contacted the Information and Support Team, please know we are here also on the Support Line as a place you can access emotional support and talk through how you’re feeling as much as needed. We don’t want you feeling you have to struggle alone this.

    It also sounds like our booklet, How Are You Feeling, The Emotional Effects Of Cancer could be helpful just now, as although you are waiting  for results, currently you are being emotionally  impacted by the concern you may have cancer. The booklet talks through support available and how you can support yourself through: including information on supporting yourself with sleep difficulties. When you say you haven’t slept since Lou70, may I ask how long this has been going on?  Do also know it is okay to speak with your healthcare team or GP if you are concerned about the difficulty you are experiencing with sleep and any effects you feel this is having.

    I really hope this information is helpful.

    Take care Lou70, and do just get back in touch if you have any questions or need any further support.

    Take care,

    Jenna 


    Information and Support Adviser


    Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days
    a week, 8am-8pm) or by email

  • Many many thanks for this information I will certainly use it. I phoned the consultants secretary today to ask if she could tell me anything, an hour later,I got a call back from someone from the hospital saying they are "discussing me" tomorrow and I will get a call from a nurse either tomorrow afternoon or Friday, so that's very reassuring. I'm thinking it may be a good sign that they're ringing me as I wouldn't think they would deliver bad news over the phone, so fingers crossed, I think I may sleep a bit better tonigh

    Thanks for your advice it helps just for someone to hear me and definitely puts my mind at ease. 

    I do have 2 wonderful daughters and husband as support, but I keep things in and don't like to worry them, but I also have work colleagues who I chat to but they haven't gone through any of this apart from one person