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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

1st time

Started by Anonymous on 28 July 2015 at 15:19

Hi this is my 1st time online.

I was diagnosed with secondary breast cancer in both lungs in Dec 2013 ha ing been "cancer free" for 16 years. 

I feel it is only recently that I have processed the enormity of this and am finding my emotions are all over the place. I feel quite alone as my husband rreally just doesnt want to talk about it - it makes things to real for him I think. 

A psychologist at Maggies suggested I try the online forum as I it would be good to hear from other people facing the same thing. Sometimes I have what I think are crazy thoughts but it might just be they are normal in this situation.

I dont even know what I really want to say today. I think I wonder does anyone else struggle with the fact of not knowing how long they have left. How do I get on living life and not worrying about when "that day"will be.

I am on hormone treatment which has so far been successful but I worry about whats going to happen next, is/when the cancer going to spread somewhere else.

Thank you for taking the time to read this 

Comments (7)

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Displaying 7 comments

  • From Anonymous
    02 August 2015 at 00:19

    Hi Tom

    Thank you for your post. 

    As a way of perhaps getting the conversation started here, I would like to say that I found the secondary diagnosis totally different from the primary one.

    Firstly they are unable to operate on me so I have this "thing" in my body which is in control, instead of me and I sometimes (not always) think -where is it going to go next and I find I struggle with the thought of it being there. This of course is totally different from the 1st time as within 2 days of diagnosis the tumour had been removed.

    Secondly and I am reluctant to say this as I don't know if its just me but I feel that the medical staff in Ocology don't seem to be as keen to engage with me as they were 1st time round. Is this because they can't offer me the same hope and can only give limited treatment? I don't know why but I have felt it in both hospitals I have had treatment in. This in itself leads to feelings of isolation and confusion.

    Anyway these are just a couple of thoughts to get us started.

    Take care

    Karrie

     

     

     

     


  • Picture of SusieQ
    From SusieQ  
    31 July 2015 at 17:23

    Hello everyone,

    Thank you for all the comments coming in - it's certainly opening a creaking door, ...which some people may feel ready to talk about, whilst others may be hastily flicking to the next conversation post. There's no right or wrong here, and I don't think there's an overall intention to avoid talking about living with the certainty of dying. (see a recent blog of mine - 'cancer and dying')

    Here at Maggie's Online Centre, as well as in our Maggie's Centres, our aim is to be open, and honest, facing the many different view points and stages people are at. Sometimes it may be in an open forum like this, and sometimes it might feel more comfortable in a one to one scenario.

    I'm so aware that everyone may feel differently at any point on any day, depending how things are going for them at the time. Other factors can also lead to feeling frightened about the future, and so treading carefully and gently is often the way used to find out more about each individual circumstance...

    I'll message you privately, Carol, to touch on what you've talked about...

    Warmest wishes

    Sue

     

     

     


  • From Anonymous
    31 July 2015 at 16:41

    It would be interesting if it wasn't so frustrating trying to deal with the general reluctance there is to talk about how it actually is & not how we & they want it to be when trying to come to terms with the reality is that survival is NOT going to happen. All I want is for people to stop wrapping it up in euphemisms so that I can be helped to deal with the reality, not false hopes which actually makes it harder when we both know that the reality is something else. False reassurances & euphemisms can actually slam a door on the whole subject. I will probably die from my cancer & I struggle with that reality but who will talk with me honestly about how that makes me feel?


  • Picture of Tombenefits
    From Tombenefits  
    31 July 2015 at 16:19

    Hello

    It would be great if others can post and share their experiences on working through the uncertainty and emotions that the news - that cancer may well still be containable, but may now have a life limiting effect - brings

    I haven't been in that position myself, but can only imagine it's something like a more extreme version of what everyone shares when they get a cancer diagnosis - but without the chance of having quick re-assurance of early treatment options and curative intent to take that sting away. Even then the "no guarantees" bit still left plenty for my imagination to play with :-) 

    But now as treatment aims change, that sense of isolation , uncertainty and loss of control must feel a whole lot bigger. The boundaries of hope get redrawn, though it can still feel there.  

    As an advisor, I've found differing reactions to the control thing: some wresting a sense back from finding out everything and planning, some from focussing on each day as it comes.

    There was a moving programme presented by someone with advanced breast cancer, putting on the front with friends and carers and opening up as she sought out others in her situation. You can catch it on iPlayer here for the next 20 days.

    It's an issue I come up with in my benefits world, simply because the question can get thrown at you early on in contact with the benefits system, whenever they hear the C word. That means I have to explore the issue with people if only to prepare them for that, while respecting peoples own decisions about what they want to know or ask about the outlook. 

    If anyone reading this wants to find out more about benefits please message me.

    But it's high time I shut up and made space for people who know whereof they speak so I can understand a little more.  

    Best wishes

    Tom

    Online Centre Benefits Advisor 


  • From Anonymous
    31 July 2015 at 07:21

    Hi, Just come across "1st Time's' thoughts. (I am known to Susieq too, by the way). I have been struggling for a while to find other people willing to talk openly about a 'life limiting prognosis' & it is not easy. The general reluctance to do this can actually add to the distress. it seems to be the last taboo but there must be many more of us in this situation experiencing all that you describe & who want to acknowledge these feelings & find ways of dealing with them as they can overwhelm the 'living life' philosophy. I would really like to find a few people facing this situation as 1st time & myself are. Carol


  • From Anonymous
    28 July 2015 at 15:51

    Thank you Sue

     


  • Picture of SusieQ
    From SusieQ  
    28 July 2015 at 15:44

    Hello, and welcome...

    It's good to hear from you - and thank you for raising a subject which I know many on here will identify with. How to look forward - when the future feels so unsure - and time takes on a new meaning.

    Emotionally it can play havoc with how you feel, and cope,  with the days which 'well' people take for granted. The chance to talk about how you feel - and more importantly, know you're not alone with those thoughts, can be therapeutic in itself..

    So, whilst I will message you privately, I encourage other online members to join in both welcoming you, and sharing their experiences...

    Warm wishes

    Sue

     


Displaying 7 comments


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