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I've been on a very long journey. First started to feel sick and have pain about 4 years ago in late 2019. My bloods have been abnormal the whole time and in September 2020 Haematology wrote to my GP confirming mild neutrophilia and monoclonal lymphocytosis and that should I develop B symptoms I should be referred back for a blood flow cytometry. 

Fast forward to a few a week's ago when I was looking through some DSAR paperwork that I obtained in 2021 from my surgery. That's when I discovered this letter. I have had B symptoms all along and yet nothing had been done. I immediately called my surgery to be told that the letter wasn't on their system. All the GP could do was apologise and submit an urgent 2 week referral query CLL to Haematology. I'm now waiting for those results and there are still about 2 weeks to go. 

I really don't know what to do with myself. Or my GP surgery for 'losing' the letter. The only pain relief my surgery will give me is Co-codamol, which isn't doing a damn thing. They refuse to give anything stronger due to 'risk of dependency'. Surely I shouldn't be left in pain?

I'm basically here for some support at this anxious time. I have bipolar and ADHD, which really don't help my stress right now. 

  • Hi  and welcome to this burner of the community. I am Mike and I help out around our various Blood Cancer groups. 

    I don’t have Chronic lymphocytic leukaemia (CLL) but I was diagnosed way back in 1999 at 43 with a rare, incurable, but treatable type of Low Grade Non Hodgkin’s Lymphoma eventually reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well.

    Although CLL has the word Leukaemia in it, in Heamatology terms it’s actually comes under the umbrella of Low-grade non-Hodgkin lymphoma - yes very confusing I hear you say.

    This is why we do have a specific CLL, SLL and HCL group for these types of Leukaemia.

    I can understand the concerns you have. When cancer comes to the battle between the ears can be hard to control especially when it’s not treated…… “you must treat this straight away!” I hear you say……. but this is not often the way with slow growing blood cancers.

    But Active Monitoring (Watch and Wait) is often the first step in the treatment of these slow growing blood cancers. I was basically on Active Monitoring for 14 years before I needed any significant treatment and this is often the case with B symptoms and indeed being stage 4…… slow growing blood cancer is completely different from most other cancers.

    Lets look for your appointment to come soon and get some clarity.

    Always around to help out or just to chat with ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • CLL is Non-Hodgkin Lymphoma? How confusing!? I'll check out the relevant group, thank you.

    I have just read your journey - ye Gods you've been through it!! But, you've come out the other side. 

    I'm truly hoping for a positive outcome from the test but it's taking such a long time for the results even though it was done under the 2 week fast track as the actual test is being done manually (or so I understand). On the other hand, if it isn't CLL what on earth is it?

    Good to meet you Mike. Hopefully we will chat again. 

  • Hi again  ….. no CLL…… IS…… Leukaemia NOT Non Hodgkins Lymphoma……. but most Haematologists will see it in the ‘same light’ as Low-grade non-Hodgkin lymphoma - and yes this can be very confusing…… most other Leukaemia’s like AML…. CML….. ALL… are very aggressive and need to be treated aggressively….. but CLL, SLL and HCL…… are ever so different

    Yes my  journey is rather extreme….. but my type of NHL is a 7 in a Million rare type so this resulted in some twists and turns over the years…… but a positive mid-set helps a lot…… and based on my 24+ years experience until you are told there is sum thing ‘significant’ to worry and stress about - don’t.

    If you live in England (not sure about the rest of the UK at the moment) the 'two week wait' was replaced last year by the Faster Diagnosis Standard (FDS) of 28 days from referral to diagnosis….. let’s hope the system get a move on.

    I am usually around on the community…….. but we are down in Surrey at the moment at our daughters as it’s our number 3 of 4 granddaughters 8th birthday tomorrow so when I am away from home I tend not to be so active on the community but do keep an eye in ‘my’ groups.


    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge