Hi, I was diagnosed with sjogrens nearly five years ago after years of my bloods showing weird antibodies. Since then I've had yearly scans of my salivary glands via my dental consultant and had a biopsy pre covid on a lump which turned out to be nothing. I had a second biopsy taken in August from a new lump on my other cheek and on Tuesday last week my consultant called me to say he needed to see me, I went in on Friday to be told I have "low grade b cell lymphoma" and that he has referred me to haematology. My husband and I are absolutely terrified, we have no idea how long the referral will take and have spent the weekend hiding our tears from our kids. Trying to avoid Dr Google as much as we can.
Is there anything useful we can be doing while I wait to hear from haematology with an app? We feel so lost with it all but trying to take positives from me being asymptomatic and that it was picked up in a routine scan so hopefully it's been caught early...
Hi and a warm welcome to the Macmillan Online Community although sorry that you had to find us and especially sorry to hear about your Lymphoma diagnosis.
I am Mike Thehighlander and I help out around our Lymphoma groups. I was diagnosed back in 1999 with a rare, incurable Low Grade Non Hodgkin’s Lymphoma so I understand this journey rather well.
The Community is divided into support groups (discussion rooms) so can I suggest you consider joining our supportive General Non Hodgkin's Lymphoma where you will connect with others who are on the same journey.
If you'd like to connect in with a group click on the Green (Bold) link I have created above. Once the group page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."
You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go. You could copy and paste the text from this post into your new post.
I will keep an eye open for you but if you are not sure what type you have pleased do get back to me on this post and I will help you out further.
