Hi
I am still waiting for final diagnosis for treatment..I believe this is a rare type and wondered if anyone else has experienced this and what treatment they were offered..thus waiting has been since June..doing my head in now..
Hi Suzed and welcome to our corner of the community.
You may want to join and put up a post in our Mantle cell lymphoma group. As always you can look through the old posts and hit reply when you want to post a question to a members post. People come and go on the community with many moving in once treatment is complete.
Mantle Cell is one of the rare types of Lymphoma so some good reliable information is important so do check out Lymphoma Action, a small UK Lymphoma Specific Charity who have lots of information, videos and run regular regional online Lymphoma support groups and indeed a great Lymphoma Buddy Service.
Waiting takes on a different meaning when it comes to Lymphoma, everything needs to be clearly checked to make sure the treatment used is the best for your presentation.
I have been on my journey for over 22 years now (see my profile) with another type of rare NHL, the one thing I have learned is the amazing developments in treatments available making most Lymphomas very treatable with great results.
Happy to chat more ((hugs))
Believe me when I say that even in the darkest times there is always hope 
Sorry to hear you were touched my Covid, we had a very close call but have all kept clear - mind you being on last year’s original shielding list had me not pass my front gate in 99 days but we are now living a normal-ish life
Getting your head in order is a big thing, way back early doors my Specialist Cancer Nurse (SCN) advised me to keep a notebook/diary……. 22 years on I have a few rather full note books on the shelf and even although I was discharged from seeing my Haematologist back in June 2018 I still use them for my post treatment medical ‘left over’ appointments.
It’s actually a good discipline to do daily notes (feelings, temperature, BP, pulse Symptoms…..) as these can show up trends and help you raise issues with your team. It is also a great tool for noting down questions especially those that are buzzing around at silly o-clock as you can park them in the book ready for your next appointment.
