Struggling today

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Hi everyone struggling today thinking off the watch and wait. Keep waiting for something to happen already. How do you cope with this, specially has they say it could be years.  Help Tired face

  • Good morning  being diagnosed with a slow growing Low-grade non-Hodgkin lymphoma is initially a mind battle.

    You get an incurable cancer diagnosis but the first treatment suggested is Active Monitoring……. Yes this is seen as being a part of the treatment process…… my consultant said “When it comes to these types of Lymphoma we don’t use a sledgehammer to crack a nut. We keep treatments for when they are going to be most effective and there is actually a strong case for no early intervention. It’s like the same as using antibiotics, the more you use the less effective treatments can become”

    Apart from on here, have you talked with anyone about your diagnosis….. and this does not include medical professionals or family and friends?…….. I am talking people who have a similar diagnosis?……. doing this can help a lot as you then find out that your are not alone and can learn how to ‘live’ life and not let your diagnosis define you.

    Way back in 1999 when I was first diagnosed as a family we put in the ‘pity me party’ rule. So my wife and I along with our 17 and 14 year old daughters were allowed to have out very own pity me party but the following morning was a new day and the party had to be over….. it most likely sounds to you that this was simple and would not achieve anything but honestly it did and helped us all to be able to deal with the stuff of life and be able to move on…..interestingly both our daughters have incorporated this into their family units…… the things of life that we can’t control have a very good way of pulling us down but the other part of the pity me party rules were the following day the family member who had the PM party had to start the day off by affirming a few positives that was part of their life.

    ’Living’ with an incurable cancer can be a challenging mind game but I always reflect on our close friends who have MS, Parkinson’s and my life gets put firmly into prospective as I have treatments if required…… my friends are on one slippery slop that has no way of stopping.

    Some suggestions:

    Lymphoma Action run regular Support Platforms...... I highly recommend these groups as there is nothing better than ‘talking’ with other who have walked the journey.

    They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.

    They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.

    Do also check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.

    Always around to chat ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi Mike I always look forward to ur reassurances,  I've spoken to mcmillian  support today and signed up for a buddy.  I've been reading alot about how follicular lymphoma is a life long condition and treatment given when required,  my daughter said to me yesterday that if I had been told I had diabetes would I have reacted the same way , I said no. She said but urs is a life long condition has well its just that the c word was mentioned. 

  • Good that you are making progress in getting your head round your diagnosis and able to position your diagnosis in relationship to not only other life long conditions but also to other cancers….. and your daughter is a very wise person.

    The Macmillan Buddy Service is great but just make sure you get someone who has lived experience in having FL as this makes a big difference as to the conversations.

    Do also check the LA support groups…… if you are Scotland you could have joined the one I run.

    It’s snowing up with us this afternoon Rolling eyes

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • I live in Manchester,  it's nit snowing here lol. It's been quite bright but is starting to go dull now. X