It feels like we are being ignored!

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My perfectly fit and healthy 23 year old daughter has recently been diagnosed with lymphoma. About 6 weeks ago she noticed a large lump in her neck and went to her GP who six hours after an initial blood test sent her to a&e and it’s all been so slow since then. After 9 hours she was sent home alone at 2.30am in tears. Since then she had an ultrasound appointment letter received after the date of the scan and eventually a biopsy. The doctors seem scared to give her any information I guess because of her age and there has been no follow up even though she was promised a call after a supposed recent MDT and she does not even know if that happened. Her symptoms are worsening by the day, painful lumps in her chest, breathlessness, coughing up green mucus and complete exhaustion. As a mum I am at a complete loss to know what to do. It’s impossible to get through to the hospital and there’s nowhere to turn to. I feel like she should just sit in a&e again but she is not allowed anyone with her and her mental anguish is matching her physical pain. My heart is completely broken for her having to go through this we have no idea what stage she is or what treatment will look like. I feel completely helpless.

  • Hi  and warm welcome to the Online Community although sorry that you had to find us and especially sorry to hear about your Daughters Lymphoma diagnosis. I noticed your post and wanted to reach out to you.

    I am Mike and I help out around our various Lymphoma groups. I was diagnosed back in 1999 with a rare incurable type of Non Hodgkin’s Lymphoma so have been on this journey rather a long time and know the process very well.

    The journey to a clear diagnosis your daughter is having is actually not that unusual and that does not take in the 'covid effect' on the system. Back in 1999/2000 it took a year, 6 biopsies and two CT scans to get a clear diagnosis.

    She/you need to get your pointy elbows into the doors of the system. Get her GP involved.... sit on the phone and call every number that can be found on any communications she has received. Ask the hospital main switchboard to put you through to the Haematology Consultants office and try and talk with his/her secretary. Go online and look for the names of the maoin consultants then call the switchboard and ask to be put through to their offices.

    In these early days you often have to be your own advocate and fight your corner...... i know that this is all wrong but it is what it is and happens a lot with Hematology Departments as they often are ever so busy.

    I have been on my Lymphoma journey for over 23 years now and have had to do this often over the years, But I will say that once the NHS system gets everything put together life levels out and progress can be made.

    There are over 60 types and subtypes of Lymphoma so we can’t have a group for every type but these are our main Lymphoma groups below.

    Hodgkin's Lymphoma

    General Non Hodgkin's Lymphoma

    Follicular Lymphoma

    Diffuse Large B-Cell Lymphoma

    Mantel Cell Lymphoma

    CLL, SLL, HCL

    Have a look at the names then join the best group for her type by clicking on the link then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens.

    If you'd like to connect in with a group click on the Green link I have created above. Then once the page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."

    Always around to help out as best as I can.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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