6 Months of pure hell

I wonder if someone could possibly advise on how I can get my situation taken more seriously or if there is anything else I can do to help myself. Back at the start of the year I started having issues with stools being loose and also some pain in what felt like my large intestine and major digestive sounds and discomfort in my intestines. After 6 visits to the Dr I finally managed to get a CT scan with contrast done, nothing found baring a liver cyst, a endoscopy which show mild gastritis and a few small polyps, biopsy’s were taken and these came back negative. Also colonoscopy was negative. However throughout this time I have been rapidly loosing weight and still am. I have gone from 11 stone 3 to 8 stone 7 whilst eating normally and not trying to loose the weight,  I am still having pain and Drs did do another set of bloods which shows liver levels are up. That was back at the end April and the only proposed action was to retest those bloods in a months time again. My problem is that getting anyone to action quickly enough on this has been and continues to be so difficult, especially since those tests done 3 months ago were clear. My mental state has gone from hope to I just want to know what terminal cancer I have so that at least I can get some palliative care before I just die at home without even knowing what is wrong. The latest Drs appointment which I had to wait weeks for because they refused an urgent appointment request for me the Dr has now referred again to liver specialist panel asking whether I should be put on SCAN pathway or specialist liver investigation, but I cannot understand why when I look at the referral it’s been put through as “routine” and not urgent. It’s feels like I am quite literally being left at home to die at the moment with no urgency being applied to the situation whatsoever and I have pushed and pushed and pushed at every stage to get tests and care that I need but obviously I can’t make anyone do anything. My poor partner is also being very affected by this as well I just don’t know what to do. I don’t know if it is because of my age (58j or my symptoms that they think it’s going to be late stage cancer anyway so speed is not going to make much difference to the outcome now, that is probably true but without a diagnosis I cannot even get palliative care. Don’t know where to turn next or what I can do to help my situation any more than advocating and pushing as hard as I can.

  • Hello and thanks for posting.

    I'm very sorry to read about your situation. This must be a very difficult time for you.

    I'm afraid we can't say what might be the matter (diagnose). Our standard advice is to talk things over with again with your GP and be guided by them.

    It sounds like your GP has taken your symptoms seriously as they have done numerous tests and investigations which were all clear. We are sometimes contacted by people who feel that their doctor is not taking their symptoms seriously and they ask us what they can do. But I’m afraid that we are rather limited in what we can say and do, because as you probably know it is not possible to have further tests or investigations, or to see a specialist without a GP's referral. All we can really do is to advise you to go back and discuss things with his GP again asyour symptoms are persisting.You may may find it helpful to say to your doctor that you are worried about cancer and see what their advice is. You can also ask if you need to have any further tests. If they say no, ask them to explain why not. You can ask how long you should he wait to see if your symptoms improve. It is useful to do this as it does put the onus on the doctor to see you again if things do not improve.

    The Patient's Association has some useful information on how to make the most out of a GP appointment which I hope will be useful.

    I hope this is of some use. Give us a ring if you would like to talk anything over. The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Kind regards,

    Celene