Hi everyone, this is my 1st comment on here as I didn't know what to say or how to ask for support. I'm not entirely new to having cancer as I suffered stage 3 bowel cancer in 2011 which required a number of operations and Chemo-Radiotherapy before full bowel resection then long Chemotherapy in 2012 afterwards. This March I was diagnosed with CMML Leukemia (thought to have been caused by my previous treatments) and a month later I was diagnosed with SMZL Lymphoma! I'm told both of these cancers are relatively slow but incurable so I am classified as watchful waiting but not sure what we are waiting for to be honest.. It will be March 2023 before they can take another bone marrow sample to establish how long I've got left. I am a 64yr old man and feel a bit lost despite the support of my wife and grown up children.
Hi again Nev, when you say SMZL your are talking about Splenic marginal zone lymphoma?
I have talked with a number of folks diagnosed with SMZL over the years and Active Monitoring (Watch and Wait) is the normal first step in the process. I was on Active Monitoring for over 14 years for my type of NHL before I needed full on treatment.
We have a few folks in the group with SMZL so let’s see them pick up on your post. You can also put SMZL or Splenic Marginal Zine Lymphoma into the search 
tool near the top, select ‘anywhere’ and this will bring up all the older post and as always you can hit reply and see if the folks are still on the site.
Over the years I have talked with a very small number of folks who were in the same position but it’s been a while now so don’t have that contact now.
I hope they are still surviving 
The last I heard they were doing fine…… I will say that as far as I can remember they had different types of NHLs and Leukaemia’s.
Its also not unusual for folks to have 2 types of Lymphoma - blood cancers can be complicated .
For good accurate information I would highlight Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Lymphoma Online Support Groups for patients...... 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 people can be linked up with someone who has walked the same treatment journey. They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.
For good information CMML do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444
You may also find this link Questions to ask your medical team about Lymphoma on the Lymphoma Action site good for questions relating to Lymphoma but can cross over to Leukaemia.
