Feeling Deflated After Final Scan Results

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Hi everyone, I finished 6 cycles of r-benda treatment on Halloween and have just had the results of my scan which showed a ‘significant improvement’ All my family and friends are happy for me and pleased that the treatment has worked, and I am also really happy that I don’t have to have any more cycles of chemo. I am scheduled to start maintenance treatment in January.
However, I feel a little deflated because I know it’s still there waiting to come back some day, and all this will start again. I feel like I am living on borrowed time and have a ticking time bomb just waiting to go off at any point. 
Has anyone else felt like this and any tips for dealing with it? I also feel really guilty for feeling like this when I should be happy that the treatment has worked.

 

  • Great result and congratulations.

    It’s now all to do with prospective, how you see the long term. Are you going to let your dormant cancer rob you of living life..... a life hard fought for or take it away from you?

    I was diagnosed in 1999 with a rare Cutaneous T-Cell Non Hodgkin’s Lymphoma and was told “Mike, I am sorry to tell you that this is incurable, yes treatable but you will never be in remission”

    After years of various treatments in September 2016 I was told I was in remission for the first time in 17 years - living the dream.

    Yes my cancer can come back and indeed due to the years of skin treatments I am almost certain that I will develop skin cancer........ but I have made the choice to live a full and happy life with my cancer and NOT to be controlled by it.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • You may also want to make a cup of tea and have a look at this great paper After the Treatment Finishes - Then What? By Dr Peter Harvey

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thanks Mike, , wise words. I am sure I will get to the point where it isn’t on my mind all the time, it’s all still very new at the moment. I do feel better every day though and can’t wait to be ablGrinningto go out and do things again, as soon as the virus is under control Grinning

  • Hi again. First sorry for the typos in my first reply I must have not had enough coffee at that point (all fixed)

    If you have read the paper above you will see the post treatment milestones are there and need to be navigated.

    Yes, like your type of NHL my one can also show its ugly face again. But do we really want to spend our life sitting around twirling our thumbs waiting for it to do so or do we make the most of the life we have been gifted to live...... a lot of others often don’t get this gift.

    The COVID world is all crazy but the restrictions everyone are dealing with at the moment were all part of my families lives from July 2014 to January 2015 then Oct 2015 to about Sep 2016 as I was post my two Stem Cell Transplants.

    Any infection, regardless how small could have resulted in some very concerning problems and indeed had multiple A&E visits and a number of hospital stays.

    Even although I am over 5 years out from treatment I am still classed as extremely COVID vulnerable and yet again I was reminded with another letter from the Scottish Government yesterday,

    But in all honesty we do our best to get out and enjoy the life, enjoy the countryside we live in and try to live a normal type of life..

    I think the post Stem Cell experience gave us a good training ground to do this. We look for things to do that brings a smile on our faces, even in these crazy COVID times and in a Highland Winter we are going out for a meal, sitting outside and it’s great.

    We will never let the fear of relapse (I had a number) or the fear of COVID rule how we live this life, we all need to take control as best as we can and ‘be’ ourselves.

    We may not ‘be’ exactly the same as we were before but my cancer journey did actually make us review life and everything that we once thought important.

    So some things from our old life are still in our lives but various aspects of our old life that were once seen as important were put in the bin and we don’t miss them.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thank you for pointing out this paper. I have just read it for the second time - I first read it about a month ago. It's more relevant to me now as I'm nearing the end of my treatment. It's very good and puts into words many of the feelings I've been having.

  • Good that you found the paper helpful.

    A lot of people use the headings as milestones. Setting out some simple goals in each area and once achieved setting new goals.... but only after giving themselves a treat..... as we are worth it Thumbsup

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hello saz67,

    So nice to get good results from your chemo!  I had the same treatment as you 1 year and 11 months ago.  I know what it's like to feel uncertain, but the fact is that your treatment has been very effective.   You can have some confidence in the attitude of your team about this.  I am told it's possible for me to have more of the same in future if/when the lymphoma recurs.  I have also read about current treatments for lymphomas which transform into nastier variants.  It's like scoping out possible alternative futures made it a thing I could manage.  I also read that most of us live with the disease and remission can last many years long, so one might as well get on with life.

    So soon after finishing your chemo course, you probably still feel a bit shell shocked and you haven't had time to rebuild your strength.  I felt a bit like a punchbag and developed some infections while my immunity was poor.  It's tough forcing this disease into remission!   I wouldn't underestimate your need to recover and rebuild your stamina and sense of control.  As this happens, you feel as if you're taking your life back into your own hands.  It also gave me more confidence, so although I'm an old biddy, I can do the things I want to do.

    My thought is to give yourself a bit of rehab time and try to build your physical strength.  It can have surprising mental effects on your outlook.  Every human being lives with uncertainty, but we're just more aware of it.  Get out when the good weather comes and take a real pleasure in being a survivor!  

    Best wishes,

    Cecren