Newish diagnosis

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Hi everyone 

I was diagnosed with follicular lymphoma in oct last year, to say since then has been a struggle to get my head around the diagnosis is an understatement. 

I was fit and well (within reason for a 37 year old), like a few others i noticed a lump on my neck, following a number of investigations biopsies, CT scans, MRI and PET scans was told I had this type of lymphoma (over the phone whilst in work, thanks covid)

I currently have 5 maybe 6 lumps on my neck, the largest one being golf ball size, (very noticeable) which have been this big for about 6 months, i have an appointment with the consultant next month, at my last appointment we discussed the possibility of having radiotherapy as the size was of a concern and the review of latest scans had shown it had progressed slightly, (the hope was it would shrink but hasn't) 

If I'm honest I'm completely over whelmed with it all, the idea that I can have treatment but that doesn't necessarily remove it is scary, the thought of just living with it forever doesn't feel right!? 

I've been feeling exhausted lately, as in I could sleep all of the time, will this go....?

Thanks, 

Jen xx 

  • Hi Jen  and welcome to this little corner of the community but sorry to see you joining.

    I am Mike  and I help out around our blood cancer groups. I was diagnosed way back inn1999 with rather rare, incurable but treatable Skin Non Hodgkin’s Lymphoma, so I do understand the mind games that come with a diagnosis like this brings.

    I was told to look at me having a chronic health condition that is treatable when required and unlike other chronic conditions like Parkinson’s, MS that will get progressively worse with no hope their is lots of hope with a low grade NHL like FL.

    Over my years I have learned to control the battle between my ears, I cant control the medical stuff and what happens happens but it’s important not to let having a blood cancer define you, you must take control.

    One big sign of stress is exhaustion and this is debilitating…. As I said I have a skin NHL (hit my name to see my story) so for the first 14 years I must have had over 900 Dermatology treatments…… I worked through 12 of these years and took early retirement but everything kicked off in mode 2013 when we had to get the big gun treatments out.

    But in Sep 2016 I was told I was in full metabolic remission for the first time in over 17 years - so I am living the dream.

    Happy to talk more and help you get year head round this ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thank you for your reply Mike. 

    I'm still working full time, an hope to be able to continue as I really do enjoy work and find being busy is a good way to manage and keep my brain occupied, but the tiredness is extreme, I never feel rested. Never considered it to be stress.

    Glad u have been in remission and hope ur well 

    Kind regards 

    Jen