Waiting for treatment

So my mum went into hospital with magnesium low on Nov 8th this year and within a few days they had identified a tumor in her liver bile duct  ... after several scans and continued hospital treatment for very fast dropping magnesium we were given an appointment with elective care at aintree to look at surgery ... it turns out this is not possible yet as there is spread in local lymph nodes and one node in chest .. so the plan for this from 5th Dec so  one month on is to do a liver biopsy to find best chemo / treatment ... we returned to the local hospital for continued mg treatment and were told her biopsy would be done 12/12  their but now today  11/12 it can’t be done until next week 18/12  as she has been on aspirin and they need to have out of system for surgery .. it’s taken almost a week to stop that ! then have to wait another two weeks at least  before  Results and then for a first appointment mean while they can’t figure the mg so she is in hospital ... my concern is the length of time that it is taking between finding a tumor and starting treatment ? Is a couple of months normal as I am feeling very anxious that this is wasting time she could be getting treated in also they found a fibroid non cancerous the size of an orange ... help is this ammount of time normal or should I be saying to hurry the hell up ??? 

  • Hi Marieara 

    I think I would say hurry the hell up!! My husband was diagnosed with secondary liver cancer on 19th Feb and was having chemo 3 weeks later. He was treated at Christies in Manchester they have been amazing. The chemo gave him back his quality of life hopefully when your does finally get the treatment she needs it will do the same. 

    Thinking of you both. 

    Keep fighting!!

    Anne 

  • Thank you I’ll Aldine out what our delay is then x 

  • hi there 

    sadly it is not unusual...

    my husband was told he has cancer at the end of February 2019, he had tests done in March which confirmed he has advanced cancer ..he went to hospital to have an operation at the beginning of May and then started chemo treatment in June....

    he's been on the treatment since and he is doing well.... the time we had to wait though was the darkest time and you are pretty much on your own..

    I hope you have  the treatment plan soon

    all the best 

  • Thank you yes it is most certainly the hardest time my family and I have ever faced and can feel very confusing and complex, thank you for the reassurance and I am pleased  that your husband is doing well x 

  • HI 

    Welcome to the online community and the carers only group and the bile duct cancer group, I am sorry that because of your mum's diagnosis that you have found yourself knocking at our door, we know that people don't want to visit us but we're always pleased that people feel able to reach to us to allow us to give help, support and advice.

    I'm sorry that the wheels of the NHS seem to you to be running slowly, unfortunately in some areas the treatment can be slow at the beginning to start and the patients and relatives get very frustrated at the length of time waiting for the treatment to start and in the case of your mum a delay occurred  due to something that should have been spotted earlier, makes one wonder why we asked to take our current medication to appointments when no one actually looks at it. This is a bad time of the year as we have Christmas and New Year almost upon us.

    If you're unhappy with the way things are going  you have the right to address your concerns to the hospitals PALS department. The Patient Advice and Liaison Service (PALS) offers confidential advice, support and information on health-related matters. They provide a point of contact for patients, their families and their carers. You can find officers from PALS in your local hospital. 

    We have this Macmillans leaflet on Bile Duct Cancer that might be of interest and help to you.

    I'm afraid the Bile duct cancer group is not very active and you may not receive many members responding, your posts and questions maybe are being read by our large number of members who like to read them but don't want to enter into discussions.

    At any time you need to ask questions about mums treatment you are very welcome to ask your questions direct to our Ask a nurse page and one of the nurses will reply to you normally within 2 days.

    Our very friendly telephone support team are available to listen to you every day o f the week between 8 am and 8 pm, they will offer support and advice and can also transfer you to one of the nurses to allow you to ask medical questions.

    Keep posting in this carers only group whenever you feel like a chat or even have a rant and rave or just to let off steam we are a very friendly group of ordinary people just like you who  know and understand what you are going through and we will give your our help, support and advice whenever we can.

    Please let know how your mum is getting on with the treatment plan she is offered.

    Ian

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