4 years and counting

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It’s almost 4 years since my diagnosis and treatment, but I’m still not clear about where it goes from here.

  • Hi alison8. Are you on this scheme where they leave you and you tell them when you think it’s come back? If so I start that game in a couple of months too. I’ve had six months of chemo and just finishing two years of maintenance treatment. I’m scared of how I’m going to feel when I’m left to “free fall” 

    xx

  • I had 6 months of Chemo in 2020 and now have regular blood tests. My diagnosis had happened while another form of cancer was diagnosed, so this does complicate how I feel and maybe my treatment plan! Free fall is a good description of how I feel but I’m sure it’s normal…who wouldn’t feel that way? I’m sure positivity is the answer, but it’s hard a hard thing to hang on to! One day at a time…..good luck

  • Yes thank you, and to you. I agree its probably normal but every day is a new normal isn't it!?

    I think sometimes its hard for those around you to understand. Once I was told I was in remission, I think everyone thinks "yes, all's ok now!". But I've been told there's no cure and it will come back its just a question of how long so for me its not ever over. Sometimes that fine and I get on with the lovely lucky life I have, but sometimes I get stuck with thoughts of the impending return. I think the maintenance treatment is bringing my mood down. I've been told that depression can be a side effect of rituximab although it is rare, but I feel more like this just after treatment.

    Sorry to rant at you but you happened to mail today just when I needed someone to rant at !!!

    thanks for listening. x

  • I have a different type of low grade and was discharged 2.5 years after my last treatment……. I was told live your life and if you needs us you know where to find us…… that was 5.5 years ago and I have not needed them.

    You may find it helpful to look at doing the Lymohoma Action Lymphoma Focused Live your Life Course that is a peer-led self-management course.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • HI Alison, I didn't get any maintenance treatment due to Covid and it's only been 3 years and I am back on treatment. I have had 3/6 monthly monitoring and my symptoms didn't follow their classic symptoms like, ' have you lost weight or experiencing night sweats.' Things I noticed was not tollerating things like cake, putting on weight and craving chocolate, which was not me. I have always been a savory person. And then gradually feeling more tired. I did have a small lump in my armpit, but I was still feeling good. They did a CAT scan and said it was 1cm. I wasn't too concerned as it is supposed to be a slow growing cancer. But it kept growing, within a year it was 5 cm and I could cup my whole had around it. Plus I noticed small lump growing up the back of my neck. Fortunateltly, I had a locum consultant, who  took one look and immeditatley ordered a PET scan and a referral to the breast clinic. Fortunately there was nothing in the breasts and the original diagnosis stood, but PET scan highlighted active nodes in my stomache, hence not tollerating certain foods. I have begun treatment in preparation for a stem cell transplant. So notice subtle changes and keep at them. All the best. Helen.

  • HI,; See what I have repied to Alison 8. Relax and enjoy life, just notice any sutble changes. All the best.

  • Thanks Helen, some very handy information which I will definitely keep in mind. You definitely need to be your own advocate in this situation! I’m also recovering from surgery to my Pancreas, which involves regular scans, which hopefully might help. Good luck .  

  • Thanks….. I’m interested in self management and, as you say, “ Live your life”  I just got back from seeing the Pyramids, which I’d put off for way too long! 

  • You may be interested in an article in the recent Lymphoma Action - Lymphoma Matters Magazine

    Patient Triggered Follow-Up

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge