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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

today i am lost

Started by Anonymous on 12 April 2014 at 15:49

hi anyone who wants to read this today i feel lost my poor wfe is so tired all she wants to do id sleep (thats what she is doing now) i can not blame her she is up and down so mush durring the night radiothapy side effects i am sat next to  her as she sleeps i love her so much ijust want to be by her side to hear her breath is enough to know she is still with me .we have the dreaded clinic on tuesday and i know she will lie and say she ifine and no she hasnt been bleeding (shes not fine and she has been bleeding) she is tired of it all and wonders whats the point i can not blame her but i am the pont i dont want her to go but she is frightend of more treatment and to no avial WHY WHY WHY us i want to scream it out loud and do i tell the doctorshe is not fine and yes she has been bleeding ? or do i let her make up her own mind ? any one out thee got any idears?

 

Comments (6)

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Displaying 6 comments

  • From Anonymous
    18 April 2014 at 14:53

    Dear Barbara and James,

    I really hope James that you listen to what Barbara has said about talking to Lesley about everything.

    When I was ill sometimes I tried to  keep everything to myself so I  didn't upset anyone but Stephen talked to me all of the time and I felt so much better and so did our daughter Emma.

    Best Wishes

    Beverley x


  • From Anonymous
    17 April 2014 at 06:08

    Dear James, I hope you don't mind me adding to what Beverley has said. I too have had a return of my cancer after 8 years and my husband and I are facing some of the same things as you. I agree that night time is the worst. All I can say is that we have found it really helps to talk to each other about everything, and I mean everything, even your worst nightmares. It can be painful, but no more painful than what you are already experiencing. They say a problem shared is a problem halved. Sometimes I think we try to keep things to ourselves to protect our loved one, but actually sometimes we become stronger for showing them our fears and weaknesses and allowing them to do the same. Maybe Lesley is keeping things to herself to 'protect' you. You may find it brings you closer together and helps you plan a strategy for coping with what lies ahead. I hope that helps a little bit and my thoughts are with you both. Barbara


  • From Anonymous
    15 April 2014 at 10:13

    Hi James,

    I have private messaged you. Sue and Robyn are both brilliant to talk to as well. They have both helped me through some very emotional times over the last few years.

    Beverley x


  • Picture of SusieQ
    From SusieQ  
    14 April 2014 at 11:22
    Edited on: 14 April 2014 at 15:01

    Hello,

    Welcome to the Maggie's Online Centre, James, and it's good to see you on here. You're going through an awful time, with Lesley and yourself facing an uncertain future...and I can fully understand the reasons why you're feeling so lost and alone...particularly at night.

    I think the nights are the worst time for anyone going through difficult physical and emotional stresses. There are less distractions, and your thoughts have the chance to crowd in, and keep you awake.

    The fear and emotions you're describing (and feeling) sound like 'anticipatory grief''....anticipating the loss of your wife, knowing what is coming, can be just as painful as losing a life. It's immensely painful...and I think from what you've said in your reply to beverley...your sons are a little wrapped up in their own worlds, so not recognising your distress?

    Your Gp sounds both supportive, and sensible, and counselling has perhaps given you the chance to say how things are, and know that what you're experiencing is normal. You love your wife, and want to protect her. Watching someone you love go through cancer, can be as stressful as living with cancer yourself...as you have no control over this big event...and it can make you feel helpless...

    Do you and Lesley talk about the bigger picture...you've been together a long time, and I imagine that even if you're not telling her, she'll be aware you're struggling?  Also, your two boys may be hiding how they feel to protect you all...and keeping 'busy' to avoid the issue a bit? I also agree with Beverley...has your wife been referred to a community based specialist palliative care nurse (sometimes known as a Macmillan nurse...) as their role would include ensuring you all, as a family, have the support you need?

    Here at Maggie's Online Centre, I hope we can be of help. On a practical note, you may be interested in our online support group for Families, Partners and Friends, which meets every monday 7pm and lasts for an hour. It is somewhere where you say how things are, in a sfae place with people who understand what it's like to be caring for someone with cancer. (just follow the link here for information about our online groups, and how to join). 

    I'm also going to send you a personal message, so we can talk about things in more depth on a one to one basis). You've already heard from one of our supportive online community, and I'm sure others will join in, having experienced similar emotional pain....and wakeful nights because of it.

    I hope you will feel able to write to Robyn or myself, and have the opportunity to talk this through. In fact, in the wee small hours , if you can't sleep...write your worries to one of us...and then you may be able to sleep for a while. Explaining it to someone else who cares, but is not a close family member, can help ease the pressure...

    Looking forward to hearing from you,

    Very best wishes

    Sue



  • From Anonymous
    14 April 2014 at 00:24

    dear Beverly

    thank you for your kind words i didnt think anyone would read my pice yesterday

    you too have been on the merry'go'round of treatment glad to read you are fighting and have surport round you that is so inportant asan out sider looking in its so hard because you never know what to say or do i very nearly cracked up last year when we found out my wifes cancer was back we have two grown boys 29 and 23 and a little grandson age 2 my boys dont want to know they can not talk about it to them mum is invinsible and she got thhrought it before so she can now but it is very different this time we have a time bomb ticking away and its hell i went to see my gp for all the good it did he just put me on drugs then another gp got me counsaling which has been a god send as she told me i am not wrong to feel the way i do and the familys get left behind so easerily but its the nights that i find hard i feel so lonely even though lesley is by my side i still want to pick her up and take herto a magic place were she will be well again i treasure the time we have and regreat all we havent dont and every thing i put off 'for another day' so thats why i can not sleep and when i do i dream she is being pulled away from me and i can not save her it orfull God he i am rabbiting on you have been a very brave lady so far Beverly and i wish you well i really do 

     

     


  • From Anonymous
    12 April 2014 at 16:40

    Hi James

    My heart goes out to you both reading your message. I know and totally understand how your wife is feeling as radiotherapy is so very tiring.

    I think you both need to sit down together and discuss the way forward and at the moment I am thinking you both feel that this is not possible. I do not know your wife's diagnoses or prognosis but one thing I do know is it is best to let the consultant know what is going on so therefore the best treatment can be given to your wife to make her more comfortable.

    I can understand your wife being terrified of having further treatment. Have you a Macmillan Nurse involeved to help you both?

    This is such a frightenign time for you and it is so obvious that you love and care for your wife so much. Give her plenty hugs.

    If you need to talk please message me.

    Best Wishes

    Beverley


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