Mother has CNS Lymphoma

  • 2 replies
  • 52 subscribers

Hello. Feeling a little lost really. Mother started showing acute changes in cognitive ability and short term memory. Previously diagnosed 5 months prior with intermediate uveitus. Doctors saying it could be CNS lymphoma and waiting a while now for a biopsy of the eye/brain to confirm. 

Finding it difficult to spend time with my mum as she is deteriorating quickly- asking repeating questions , not being able to hold onto any information and becoming upset emotionally  Not really even able to comprehend her diagnosis. Watching her in pain is torture. I've found music to be an excellent distraction. Unfortunately she has lost interest in EVERYTHING else and even now her appetite.

Looking to connect with someone who is maybe going through something similar however I feel this is a very rare case.  Welcoming to any support out there!

  • Hi   and a very warm welcome to the Macmillan Community but sorry to hear about your mum’s possible CNS diagnosis. 

    A cancer diagnosis in the family can be such a challenging and stressful time but getting support from others who are dealing with the ‘exact same' cancer type or support challenges will help you a lot……. I have lived with and been treated for my rare incurable type of Non Hodgkins Lymphoma for over 25 years so I do know some of the challenges…… but not the caring side.

    The New to Community is like our reception desk where we try to direct you to the best part of the Community for you to get support. The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated……

    Non-Hodgkin lymphoma

    …… support group. This group is a safe places to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support from family members who are navigating the same support journey…… and there have been a few come through the group with CNS or family who gave it.

    As for the practical and emotional challenges of supporting your mum and indeed yourself you may benefit from joining and posting in our cancer wide……

    Carers only 

    ……. support groups where you will connect with a wide range of members navigating the exact same support challenges.

    To connect with a group click on the “Bold Italic Links” I have created above …… then once the group page opens click in the [ Black - Click to Join - Banner ] that appears at the bottom of the page and this will then confirm that you have joined the group.

    When you are ready……. you can introduce yourself by putting up your very own post by clicking [ + Create new post] or [ + ] in the top right of the group page.

    You can copy and paste the text from this post into your new post.

    It is an emotional time supporting family so you might find this Macmillan information your feelings when someone has cancer helpful as well as this link getting help with your emotions.

    You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

    We also have our Ask an Expert section but do allow 3 working days for a reply.

    Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and support all the family.

    Do get back to me if you need further help navigating the community ((hugs))


    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thanks Mike. Appreciate the support!