Symptoms or not?

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Hi Friends, thought its about time i checked in with you all! I hope you are all doing great on your individual journeys! Mention to The highlander,GLANN, TKJEDI, you were all kind enough to write to me when i was diagnosed, which helped enormously! I am still here tackling the journey lol! I am going on for 2 years since heads up there was a problem, and was diagnosed stage 1/2 follicular lymphoma, still active monitoring, and getting on with my life!! Just wanted to ask, anyone reading this maybe one for mike, but they are happy with my bloods scans ect, so much so they have increased testing from 4 to 6 monthly! But i find it hard to decide weather tiredness, and bit of breathlessness, is cancer or old age catching up with me? Any body experience these symptoms, but they are not the B symptoms we are told to look out for?? Luv n hugs to u all Donna

  • Hi Donna  and good to hear from you.

    I think the first thing to say….. and this has been my approach during all these 24+ years is ‘If my consultants were happy I was delighted’….. and the fact that they have extended your testing to 6 months reflects this.

    The other thing to remember is although you are not having any treatment your immune system is occupied 24/7 7 days a week keeping an eye on your FL and at times, unbeknown to you may well be having the occasional fight with your FL and putting it in its place……

    Your profile says your 66 but you may have done this when you first joined the community so you may be getting closer to 68…. I turned 68 last Nov and remember that I have been in remission for my type of Low Grade NHL for a number of years and my last treatment was Oct 2015…. but over the years I have found the winter months slightly more tiring…… and the less I do the more tired I get!!!

    I for me I have had a few small bugs over the winter….. but I have accepted that my body is getting sloooowly worn out Wink

    I also have asbestosis so it’s hard to differentiate between this and other breathing issues but generally I am always better once the spring comes round and I get more active.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi Mike, just a quick "check in" - and hope all is well with you and family.  I am halfway through maintenance  for NHL and thought I was sailing until I caught COVID two weeks ago.  My husband, also tested positive, today he has a clear reading and I am still straggling with a faint line. I would like to say, it was more like a bad flu to begin with, and took no notice etc., until my husband had similar symptoms, under the circumstances decided to do the test.  I have never tested positive all through COVID lockdowns, hospital appointments, treatments, no treatments, etc., and somehow it got me!  I can only think it was me travelling up to London on the trains to see my terminally ill brother, who is now in a nursing home, and catching it then, and me passing it onto hubby!  Really wish, there was a vitual video of how we actually caught hese viruses!!! Apart from the usual cold like symptoms, I stayed stable and think that is an achievement, especiallly as my Consultant said I would be prone to being very ill if I caught COVID under maintenance... phew so glad to report - not the case so far.  Not sure how I will feel when maintenance finishes, and back on W&W - don't think I can ever feel quite the same now after a long period on watch and wait and then treatment, makes you think all sorts!  I have popped in and out of the site every few months, just to see if I can help with similar stories like mine.  Take care - know you would have been watching the Rugby lately!!

  • Hi  and good to hear from you.

    Sorry to hear about your brother

    I think that living life with a Low Grade NHL we will always be more open to catching infections but good that your brush with Covid was not problematic, it’s amazing what our bodies can do…… even when it’s fighting on 2 fronts.

    Yrs been following the Rugby….. and it continues to be both enjoyable and frustrating in equal measures.

    Keep well.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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