Thank you for accepting me. My journey started last Feb with infection in my left groin....after lots of tests, x 3 biopsies, umpteen scans including PET scan i was finally diagnosed last Sept with Follicular Lymphoma low grade stage 2. Not had a great Haematologist and ended up complaining to hospital. Now i have enlarged nodes in my right groin and lower back pain. Im due a CT scan soon but only after i pushed and pushed for it. Haematologist didnt seem concerned! Feeling down at present as sick of having to fight for good treatment.....hada lot of errors along the way. Was hoping this year would be better but went to a CT scan appt last Friday only to be told it was cancelled!! I thought here we go again.....spent most of this morning ringing different departments trying to rearrange.. its supposed to be urgent within 2wks! Ive lost all confidence in my haematology team 
I have submitted a formal complaint to the hospital. Ive also changed Consultants.
Hi Rosie30 and a warm welcome to this corner of the Community although I am sorry to see you joining us. I am Mike and I help out around our various Lymphoma groups.
I don’t have Follicular Lymphoma but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
My various clinical teams (Dermatology, Oncology, Heamatology and Stem Cell Transplant) have all been great so I am sorry to hear about the challenges you have been having.
Let’s look for your new consultant to be more supportive.
Always around to chat,
Good morning Rosie30 you can safely unpack the ‘stuff’ that is going on…. as long as you don’t name health boards, hospitals or clinical staff.
There can be legal implications for support charities that allow ‘some types’ of comments to be published where health boards, hospitals and medical professionals are mentioned.
