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 angain Starz and welcome to this corner of the Community although.
I don’t have CNS Lymphoma but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-Grade NHL then in late 2013 a more aggressive type of NHL came along with me now reaching Stage 4a so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
From talking with others over the years on this platform and another support platform what your mum is experiencing tends to be normal but once treatment starts these problems should improve…..
Let’s look for some of the group members to pick up on your post. You can also look through the various CNS posts (hit the main group name and scroll down) and as always you can hit reply and ask some questions and see if the member is looking in.
I also volunteer for Lymphoma Action. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information about all things Lymphoma from what is Lymphoma. symptoms, types of Lymphoma treatments and many support platforms.
Just this morning I was talking with 2 family members who are caring for family on their CNS journey
Lymphoma Action run regular Support Platforms both for patients with a few groups specifically for Family and Carers...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.
They also have a great Lymphoma Action Buddy Service where both patients and carers/family can be linked up with someone who has walked the same treatment journey.
They also have a Lymphoma helpline on 0808 808 5555 where the team will be on hand to give you some support - open every week day from 10 till 3.
Always around to help more or just to chat
