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Hi Wave tone1 was diagnosed end of January and have been put on watch and wait. I’m finding it difficult at moment to get my head round the fact I have non Hodgkin’s lymphoma and I’m waiting to fight it. Anyone got any tips to help. Thanks Blush 

  • Hi  and a welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.

    I don’t have Follicular Lymphoma (FL) but was diagnosed way back in 1999 with a rare, incurable but treatable other type of Low Grade Skin NHL (CTCL) eventually reaching Stage 4a so although my Lymphoma ‘type’ is different I know this journey rather well.

    It takes time to get your head round that you have Lymphoma, the 5th most common cancer in the UK and at the moment there is no need to treat it. Active Monitoring (Watch and Wait)  is a mindset but I have talked with many folks with Low Grade Lymphomas like FL that have lived happily for years before they needed treatment.

    FL is the most common type of Low Grade NHL so this means there are lots of options if and when they are needed.

    As I said I have a rare type of NHL so it took 14 years before I needed any full on treatment although I was having skin treatments. I just accepted that I had a chronic illness and got on with life. I worked for 12 years in a demanding teaching environment and as I had to have regular skin treatments was having these first thing in the morning then going in to do a full timetable. We lived a normal life, saw our daughters go through school, university, get married and provide 4 beautiful Granddaughters, holidays - all the normal things in life...... it's all about understanding your condition and learning to live along with it and not let it define you.

    I always highlight the Lymphoma Action website (the links about are taken from the site). Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Regional Lymphoma Online Support Groups and a great Lymphoma Buddy Service where people can be linked up with someone who has walked the same treatment journey.

    Always around to help more or just to chat.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • When I was diagnosed with FL 3.5 years ago, I was also Watch and Wait. My oncologist said some people can live to a ripe old age and never have it advance. I just knew I was going to be one of those people and never gave the condition a second thought. My yearly check-up always told the tale of ‘perfect bloodwork’, perfect health. In Dec 2021, I had a random fracture of my femur that was not caused by trauma. I was just getting out of bed. Scans showed that I had bone lesions. I officially had a secondary condition caused by my FL. Pensive

    What do I wish I had done differently over the last 3.5 years? I wish I had hydrated like crazy. The lymphatic system needs hydration to function properly. I wish I had exercised more, even as simple as walking the dogs each day. The lymphatic system has no ‘pump’. It relies on kinetic motion to move lymph fluid. I wish I had established a diet that leaned more towards alkaline. A highly acidic diet is not good for any part of our body, and, cancer loves an acidic environment.

    Currently undergoing chemo and praying that I can keep things ‘in remission' once my infusions are done (every 28 days for six months). Water. Motion. Diet. Those things are a part of my new life, and, moving forward, always will be.

    Praying you stay Watch and Wait for many many years! Dont let the words hold power over you. My circle of friends know I dont want to hear these words - cancer, chemo, lymphoma. We say condition, treatment, infusion, etc… This forum is a Godsend and I hope you find some peace in knowing that your journey may never advance beyond the FL diagnosis. And, if it does, the treatments are very successful!