Reaching Out For Help

  • Posts: 1
    29/08/2016  06:49

    I have been living with cancer for 8 years now with lung mets for the past 4. Was told this week there was nothing else that can be done. Feeling scared and wondered if anyone had any coping techniques ? And support is welcome.

  • Posts: 112
    31/08/2016  12:39

    HI Ginlay,

     

    It is natural to feel scared when you are given the news that nothing else can be done. Everybody responds in their own way when they’re told they have a terminal illness. Lots of people feel shock and disbelief, even if they thought they might hear this news. Many people have told us that it is very helpful to discuss how they are feeling and this can be with family & friends, your GP, or somebody like ourselves. You can find information on living with a terminal illness at our website which may help you to understand your feelings and to help you plan ahead to make the most of the time you have left: https://www.mariecurie.org.uk/help/terminal-illness

     

    If you would like to talk about things in more detail please call our Free phone Support Line on 0800 090 2309, or drop us a line via Web Chat: https://www.mariecurie.org.uk/help

     

    Best Wishes

     

    Brigette

     

    Marie Curie Support Line

  • 08/11/2016  16:33


    Dear Brigette,


    Hope you're well too O:-)


    I just newly registered.


    I'm still relatively young, a late uni student. For the past 15 years I've been living with a slowly deteriorating health condition that's now progressing faster, thus getting more and more issues of breathlessness, when changing positions it can increase, especially when I lay down from standing to the bed.


    As my body's own coping mechanism, not a good one :-P, I'm now usually going to sleep in two bits, first just sort of half-sitting on my bed and sleeping some like that and then when I wake up, I lay down more on two pillows. 


    I'm new to this ''stage'' and my nights are completely different now... yak. Before I was a superb sleeper, famous for my every day quick trip to dreamland! :-)


    Now going to sleep, emotionally, is a big big issue, stuffed with anxiety and with those creepy feelings, ugh. My bed doesn't feel like a secure nest any more. I'm thinking on one of those triangle shape pillows that create a comfortable angle (also because of my swallowing/drooling issues). I live by myself with no family.


    Often I feel that it would be good to chat a little to someone on the phone before I drift off but, the thing is, my go-to-bed time varies.


    What's the best way to do it? I'm reading that you close your helpline around 6 Pm.


    Who to call after for some de-stressing talk?


    I'm quite nervous of calling ANY helpline yet :-DDD so I'm training myself up to it by composing this post. 


    Me writing this up here is a huge step forward for me! 8-)


    I'm thinking that if I'd call a helpline telling that I just would like to chat a little before I go to sleep because the set up of my bed needs to be adjusted due to where I am now health wise... maybe they would just laugh at me :-( We have a student helpline that goes into the night... but I'm not sure if that would be the best way. 


    I mean, from the outside it doesn't seem like a big issue maybe, pillows and posture of sleeping changing but to me it is a huge issue at the moment, one very practical and very emotional.


    I feel quite defeated at the moment, naturally :-P 



    Thank you for reading! <3


    I'm looking forward to reading your reply, Brigette.



    F.o.L.




    [quote]

    HI Ginlay,

     

    It is natural to feel scared when you are given the news that nothing else can be done. Everybody responds in their own way when they’re told they have a terminal illness. Lots of people feel shock and disbelief, even if they thought they might hear this news. Many people have told us that it is very helpful to discuss how they are feeling and this can be with family & friends, your GP, or somebody like ourselves. You can find information on living with a terminal illness at our website which may help you to understand your feelings and to help you plan ahead to make the most of the time you have left: https://www.mariecurie.org.uk/help/terminal-illness

     

    If you would like to talk about things in more detail please call our Free phone Support Line on 0800 090 2309, or drop us a line via Web Chat: https://www.mariecurie.org.uk/help

     

    Best Wishes

     

    Brigette

     

    Marie Curie Support Line

    [/quote]

  • Posts: 112
    09/11/2016  15:35

    Dear Flower of Life,

     

    It sounds that the change in your sleep pattern has been very unsettling for you. Have you spoken to a Health Care Professional about this at all to see if there is anything that they can suggest to help you? I have no medical training but can appreciate how frustrating lack of sleep can be. You mention that due to your condition you suffer from breathlessness have you had a look at the information on our site: https://www.mariecurie.org.uk/help/terminal-illness/manage-symptoms/breathlessness.

     

    Mind have some very good fact sheets on Sleep problems which you can find here: http://www.mind.org.uk/information-support/types-of-mental-health-problems/sleep-problems/#.WCM1xfnIZsc and tips on helping sleep here: http://www.mind.org.uk/information-support/tips-for-everyday-living/sleep-problems-tips/#.WCM19PnIZsc.

     

    If you are feeling anxious and find talking helps to settle you then reaching out to a Helpline is a great idea. If the student Helpline is open when you need them then I would suggest trying them. Another option which may offer you support is SANEline they are open from 6pm-11pm daily on 0300 304 7000.

     

    If you would like to talk about things in more detail please call our Free phone Support Line on 0800 090 2309, or drop us a line via Web Chat: https://www.mariecurie.org.uk/help

     

    Best Wishes

     

    Brigette

     

    Marie Curie Support Line

     

     

  • 10/11/2016  14:20

    Hi Brigette!

    Thanks so much for getting back to me :-) 

    Yes, we will go to initiate another, new and hopefully this time successful conversation with my GP... This time I'm bringing an advocate ;-) I got fed up with not being listened to. (I'm an immigrant with no family.)

    I like the idea about SANELine, thank you so much! The thing is our students' emotional support helpline is a landline and it doesn't say 'free' :-(

    I will go through the breathlessness sheets and because I was able to open up here I was able to take a deep breath ('cuse me the pun :-D ) and ordered an elevated angle pillow yesterday. It gives a good angle both for sitting and relaxing and then turned around it's an adjusted pillow for the night 8-)

    Just found out that SANE also runs a call support service so I will definitely talk to them and mention this to my support worker if it needs referral.


    I've caught things at an early stage with these issues and I will be to place good support in place now.

    I really appreciate your response <3

    I want to take better care of my nights and I believe using the adjusted pillow will help a lot, e.g. also with relaxing shoulders and neck better that can also place extra stress on the lung area!

    I have another question... hope you don't mind?

    But conversing with you opened me up more and now I feel better!

    So: Do you know about a good support group, Facebook closed group or else for people with slowly progressing conditions? It has a special attitude you are required to maintain when things deteriorate rather slow, which is good and bad both, I find.


    Love and thanks,

    F.O.L.


    [quote]

    Dear Flower of Life,

     

    It sounds that the change in your sleep pattern has been very unsettling for you. Have you spoken to a Health Care Professional about this at all to see if there is anything that they can suggest to help you? I have no medical training but can appreciate how frustrating lack of sleep can be. You mention that due to your condition you suffer from breathlessness have you had a look at the information on our site: https://www.mariecurie.org.uk/help/terminal-illness/manage-symptoms/breathlessness.

     

    Mind have some very good fact sheets on Sleep problems which you can find here: http://www.mind.org.uk/information-support/types-of-mental-health-problems/sleep-problems/#.WCM1xfnIZsc and tips on helping sleep here: http://www.mind.org.uk/information-support/tips-for-everyday-living/sleep-problems-tips/#.WCM19PnIZsc.

     

    If you are feeling anxious and find talking helps to settle you then reaching out to a Helpline is a great idea. If the student Helpline is open when you need them then I would suggest trying them. Another option which may offer you support is SANEline they are open from 6pm-11pm daily on 0300 304 7000.

     

    If you would like to talk about things in more detail please call our Free phone Support Line on 0800 090 2309, or drop us a line via Web Chat: https://www.mariecurie.org.uk/help

     

    Best Wishes

     

    Brigette

     

    Marie Curie Support Line

     

     

    [/quote]

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