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As well as sharing experiences with our friendly online community, registered members are able to contact our experienced online team. The Centre is staffed during office hours and the online team aim to reply within 24 hours.

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Picture of Topic  'Today I am feeling' - managing emotions

Topic

Topic 'Today I am feeling' - managing emotions

Share how you are feeling and swap tips for managing stress with other members and the online team

  • 186 conversations

Active Surveillance?

Started by Anonymous on 12 September 2016 at 19:58

I suppose I'm lucky in that, having been diagnosed with CLL 4 yeas ago at the age of 48, I am under Active Surveilance and so far, I'm told, stable and 'with good progonostic markers', whatever that means.

Yet, if you have to work (to live) and meet deadlines and deal with people 'professionally' on a daily, unrelentless basis and just generally 'do your job, even when you feel like curling up in bed overwhelmed by fatigue and by aching lymph nodes, then there are moments when you feel unlucky.

It seems that the medical profession can not / will not help until the moment you actually drop.

In the meantime it is a daily struggle, a great act pretending that all is fine...

What is active about Active Surveillance?

 

Comments (3)

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Displaying 3 comments

  • Picture of Robyn
    From Robyn  
    14 September 2016 at 11:47

    You are indeed very welcome to get in touch -   As Sue mentioned It can also help to hear from others  in a similar situation , I hope you will  be able to join the next online haematology support group on 6th October

    Best wishes

     Robyn


  • From Anonymous
    13 September 2016 at 16:04

    Thanks, Sue. 

    You have summarised it well.

    Talking things through with you and Robyn may be a good idea. I feel that I am getting depressed about this and I hate the notion of it...

    Yours, Giuseppe

     


  • Picture of SusieQ
    From SusieQ  
    13 September 2016 at 10:56

    Hello,

    You have made a very good point, and one I'm sure many online members will identify with. There are several cancers where the medical teams place someone under 'Active surveillance'.

    Active surveillance is defined as 'A treatment plan that involves closely watching a patient’s condition but not giving any treatment unless there are changes in test results that show the condition is getting worse. Active surveillance may be used to avoid or delay the need for treatments such as radiation therapy or surgery, which can cause side effects or other problems.' (National Cancer Institute).

    It sounds quite simplistic, but it underestimates sometimes the immense pressure of living with the uncertainty of the future cancer development. In some cases, particularly haematological cancers, the day to day living with relentless fatigue, can be disabling in itself. There's also the tendency for all those around us to forget that cancer is in the picture, and therefore questions and concern stop being asked...which can be isolating.

    This is hopefully where places like Maggie's Centres come into their own, offering support and understanding about the impact of living under the 'active surveillance' umbrella. There may be benefits advice needed if you're living with constant fatigue, and you can meet others who understand that this is hard to live with day to day, even with a good prognosis.

    I hope other online members will comment on this too, so you can hear how other people feel...

    ...and do message Robyn or myself if you'd like to talk things through,

    Warm wishes

    Sue


Displaying 3 comments


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