Hi, I have had chemo for Marginal, finished in September. They now think it's CLL, waiting for bone marrow to come back from genetic testing. I've been left for 3 months, I still feel so unwell, fatigue, leg and joint pain and still have body sweats, unable to return to work due to back fractures, waiting to see specialist. Lots of waiting, feeling unwell. Advice 
Hi Pichina 55 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 Marginal Zone NHL 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 - Not Otherwise Specified 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.
Unfortunately, waiting goes hand in hand with Lymphoma and especially waiting for test results…..
When was the last time you put your pointy elbows into the system to see what is going on?….
If it’s longer than a week you need to get on the phone to push this and highlight the challenges you are dealing with……
Based on my 25 years experience on this journey and more so now dealing with our very stretched NHS….. keeping the pot boiling in your favour is very important and helps stop or catch things falling between the cracks in the system.
Thanks Mike, I'm just a little confused as to why they won't treat for CLL. I have symtoms that effect my daily life, but my nurse said they don't need to do anything until my bloods drop . This is how they found my lymphoma, anemia, bloods dropped to 42, I was so poorly I don't want to go through that again. My GP didn't pick it up so no trust in the system.
Although CLL has the word Leukaemia in it, in Hematology terms it actually comes under the umbrella of Low-grade non-Hodgkin lymphoma - yes very confusing I hear you say.……
So it’s normal to be put on Active Monitoring (Watch and Wait) as they just won’t treat until your symptoms are at a point where the treatment will be most effective.
It took 14 years until my low-grade reaches the point where full on treatment was needed.
