Hi eveyone. I was diagnosed with NHL January 2020. Flowing my PETCT scan i was also diagnosed separately with low grade thyroid cancer which was removed in september. My treatment is watch and wait which is good and i have made healthy changes in my life and probably never been fitter . . My problem is because im not having treatment and i look so well, people seem to forget i have blood cancer and dont account for the fatigue which i feel all the time. Is this other peoples experience.
Hi Newgirl and welcome to our corner of the site, wow two cancers but good to hear that your thyroid cancer has been dealt with.
You will find that a blood cancer like NHL can be a different type of journey but first a question - do you know the ‘exact’ type of NHL you have..... as there are over 60 types including subtypes 
Active Monitoring, I prefer this to Watch and Wait as it sounds less stressful is often used for low grade indolent lymphomas. Basically you have the cancer but it’s far to early to treat as the treatments would not be as effective..... it is a mind game but people can go for years without treatment.
I have a rare skin Lymphoma and apart from regular skin treatments as though I had bad Psoriasis it took 14 years for the big guns to be used.
In some circles blood cancers are often called the ‘invisible cancer’ especially when you are on Active Monitoring...... but you still have cancer and with it the stress and worry along with having the cancer will often result in fatigue.
People don’t understand that if you have cancer you ‘cut it out’ like your Thyroid Cancer but low grade blood cancers are often seen in the same light as chronic illnesses like ME, diabetes..... as like some chronic illnesses, some low grade NHLs are incurable but treatable just like my type.
Honesty is the key when talking with others, help them understand what your cancer is and how you have to live with it.
Happy to talk more as this helps you get your head round this...... but it would be good to know your type of NHL
Do also check out Lymphoma Action, a small UK Lymphoma Specific Charity who have lots of information, videos and run regular regional online Lymphoma Zoom support groups and indeed a great Lymphoma Buddy Service.
Finaly some info on Active Monitoring
Hi again, Marginal Zone is a low grade NHL so you will often be put on Active Monitoring in the early days. Yes I have had a long journey starting back in 1999 but hit my community name for the story but in way of some encouragement.
When I was diagnosed with my rather rare and difficult to treat Stage 4a Cutaneous T-Cell (skin) Non Hodgkin’s Lymphoma. I was told “Mike, I am sorry to tell you that this type of NHL is incurable, yes treatable but you will never be in remission”...... but after years of various treatments in September 2016 I was told I was in remission for the first time in 17 years - and I am living the dream.
The important thing to remember is the NHL is very treatable with good results and with plenty of treatment options when required.
The word cancer initially bring fear and yes planning your funeral...... but once you get your head round this and talk with others walking the same path you will find out there is lots of positive stories that bring lots of hope.
((hugs))
