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'Today I am feeling' - managing emotions

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

  • 163 conversations

Feeling useless to help

Started by Anonymous on 15 August 2017 at 22:21
Edited on 15 August 2017 at 22:21

Hello I am new to this site . My husband is 61 years old and has 6 weeks ago out of the blue been diagnosed with transitional cell carcinoma that has spread to his lung , lymph and spine . He has started chemotherapy and is currently in the second cycle of treatment . He looks so well and all this seems like a bad dream that we will wake up from . The chemotherapy is a 3 week cycle and for the first 2 weeks he is very poorly indeed and goes from bed to sofa - if he does anything else he is totally worn out . Over the weeks he has been getting more and more down and I feel so useless as to how to help . When we go for treatment or speak to people outside the house he manages to put on a public face and people would not guess how he is really struggling . We see the Oncologist once every 3 weeks and neither my husband or I have asked many questions re prognosis ( it was indicated in the beginning that the worry was the quickness of the spread ) as we are afraid of the reply and feel that we can only deal with what is directly in front of us . I try to keep positive when I am around him - whilst inside I feel my heart is breaking and just don't know what to do :-(

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  • Picture of SusieQ
    From SusieQ  
    22 August 2017 at 16:51

    Hello,

    It sounds as though you and your husband are exhausted with everything. There is so much going on for you as a family - your father in law in hospital, and your husband having a tough time with his chemotherapy.

    I wonder if your husband is struggling emotionally and psychologically with this huge univited event in your lives - he's had the shock of diagnosis, and then the impact of intensive chemotherapy. The chemo itself will be hitting him hard - tiredness can be a big feature, and definitely worth mentioning to the oncologist. It may be that the dose needs a minor adjustment, or he may even be a little anaemic.

    If the doctors dont know that, because of the brave face you're both presenting at appointments - then it makes it harder for them to know there's a problem.

    Your husband sounds naturally low in mood, as a consequence of what's going on - and if he feels able to, he could have a chat with his GP about his fatigue and taking to his bed/sofa. Much of it will be chemo related fatigue, but it can be the beginning of mild depression so worth keeping an eye on.

    I'm aware of you, in the middle of all this, supporting your husband, keeping the house and home going, trying to be all things to all people. Trying to sort out a care home for your father in law, and worrying about your mother in law too...it's a great deal to have to manage. I hope you can be kind to yourself, and have a break from the situation, even if it's for a couple of hours.

    Perhaps you and he need to sit down and talk about how he feels, and gently explain what you are witnessing, and the oncologist/chem nurses need to know. Say how you're feeling with everything, and ask if he is feeling the same? Talking about it with each other will clear the air...I suspect you're treading on eggshells at the moment,...?

    Finally, whilst there are no Maggie's centres near you, you may like to contact Tenovus, who offer support for cancer patients and their families. They have a telephone helpline (8am - 8pm) staffed by qualified nurses, who may know what is available in your area, and offer advice and a listening ear for you.

    ...and Robyn and I are here to message, anytime...

    Warm wishes

    Sue

     

     


  • From Anonymous
    22 August 2017 at 16:02

    Hello thank you for your response . It seems that the chemotherapy treatment is very brutal and whereas my husband was very active and involved in many golf competitions he has been unable to play through feeling so unwell . He has tried to do the things he used to but is just so worn out . We have had to cancel a family holiday and today he has pulled out of a golf trip for 2 days with his friends because his Achilles heel is hurting him so badly and he feels so lethargic . He seems to not want to bother to do anything as everything seems too much . This week is his rest week from chemotherapy so this week is prob the best it gets , but everyday he says he is going to try to do something but everyday ends up the same with him going back to bed . When we first saw the Oncologist he said that this would be a hard mental battle . I want to let someone know but he will feel I have betrayed him if I ring the chemo team as to them he always wants to Present this strong fighting spirit and very friendly personality to them . In addition to this his father is 89 and has been in hospital for the last 8 weeks ( when we had the cancer diagnosis ) , he is deteriorating daily but my husband has not been able to visit him because of the risk of infection whilst having the chemo . My husband is an only child and I have been trying to fort things out in regards a care home drs for him as his wife can no longer care for him as she is 86 and very frail herself . All this is adding to the pressures and I just don't know what to do . We live in South Wales and there is no Maggies centre nearby .


  • Picture of Robyn
    From Robyn  
    16 August 2017 at 10:06

    Hello I imagine many others reading your post will identify with the feelings of helplessness at seeing someone you love so unwell…. It’s understandable you are feeling overwhelmed.

    I am wondering if your husbands specialist nurse/consultant are aware he is having such a tough time with the treatment, especially as it sounds as if he put on a brave face whenever others are present?

    There are many ways that side effects of treatment can be eased but the hospital team need to know about them in order to help….. don’t wait until the next appointment , give them or your husbands GP a call today and let them know how unwell he is.

    You write that you try to stay positive around your husband even though your heart is breaking – my guess is that he is doing the same and both of you are using a whole load of energy pretending you feel ok to protect each other.

    It sounds time to talk about the elephant in the room and to be more honest with each other about how you are feeling – it’s a hard conversation to start and I am sure the will be tears however, I think you will both come out of it feeling closer and more of a team and you can then work out together what you want to ask the oncologist.

    I don’t know where you are based you (with or without your husband) would be very welcome to visit any of our Centres you don’t need an appointment you can just drop in. You are also welcome to message Sue (susieq) or me if you would like to talk things over privately.

    Best wishes
    Robyn


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