OK. I was diagnosed with low grade follicular lymphoma (incurable but manageable) in March 2020, just as we went into the first lockdown. All was OK and I plodded along as anxious as everyone else with a diagnosis was regarding Covid. Unfortunately one of my two tumours was in my nasopharyngeal area and caused complete deafness in my left ear around about March 2021. A 2.5 week radiotherapy course was recommended which was completed mid July. I now have some hearing back in my left ear. Having recently had a telephone appointment with one of my team, I now find out that they can’t say for definite that the tumour has been eradicated and that there is no plan in place to have an annual scan to see where this b**ch may have spread within my body. Their plan is to deal with problems as they arise. I’m finding this pretty difficult to deal with and this is not helping with my mental health. My anxiety meds have been increased and I’m waiting for a free slot with a councillor. I’m really finding it difficult to understand why they are not proactive. How do you all cope?
Hi again Rafferty1, low grade incurable types of NHL are very challenging and indeed a battle of both the body and the mind. Your recent experience shows there is no guarantees as to how effective treatments can be and consultants will often sit on the fence
I am 6 years out from my most recent treatments and it’s not about if it comes back, it’s more when will it come back. I was told I was NED (No Evident Disease) Full Metabolic Remission back in Sep 2016 which for me was amazing as its the first time I have ever been in any long term remission in over 17 years.
I have developed the ability to not allow the ‘what if’s’ define me…… I choose to define how 'I live life' along with my cancer.
They only treat low grade when the presentation gets to a point where treatment can make a significant difference….. this is the craziness of blood cancer.
Seeing a councillor could well help you. I have received some great support at our local Maggie's Centre
Sending you supportive ((hugs))
Hi Mike
Thanks for your reply. I wish I could be at the point of acceptance and management (as you are) but it’s difficult. I have not gone through the trials and tribulations that you have over the years. It’s just a difficult to get my head around. if I was able to live a normal life. other than covid obsessed, I wonder if I’d find my position a little better to cope with. Unfortunately. Public Health England & the Government have frightened the bejesus out of me, so for the past eighteen months I have felt so very isolated. We now have a new variant to worry about. God help us 
. Thank you for the hugs, much appreciated 
x
Yes Covid has brought a new dimension to living the blood cancer life.
Based on the lack of information available in the early Covid days I did what I was told back at the start and did not go past my front gate for 99 days.
But once I got to understand what this is all about and started to understand that there was not much difference between me developing Pneumonia yet again with the last time being rather touch and go…….. and Covid….. and having talked with many blood cancer patients who have had Covid and did well…… we started to live a more relaxed life continuing to be very carful just as we did for the year following each of my two Stem Cell Transplants.
As I said it is all about control our journey as best as we can and not to become a prisoner to all the stuff that us going on around us. There will be many other variants, like most pandemics through the centuries it takes about 3 years to move from a pandemics to an endemic illness.
As I said before Lymphoma Action run regular regional online Lymphoma support groups, the one I attend is excellent. They also run a very good Lymphoma Buddy Service where you can be matched up with someone on the same NHL type and treatment journey - all worth considering…… there are lots of ways to be connected during these challenging times.
