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Need advice. Mum may need palliative care soon and I don't know how to cope.

Niknak214
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Hi. I’m looking for some advice, I think? 

For a few years now my mum has been dealing with skin cancer on the top of her head, the hospital left it for ages and then we went for another appointment due to me watching it grow larger when they said it wouldn’t. 
Come 2021, they decided to run tests etc, found out it was skin cancer and they then done a very aggressive session of Radiotherapy until January 2022. Since she finished the radiotherapy they said no follow up was needed, that it would stay localised and wouldn’t go anywhere else. 

Fast forward to this year, after a long time of fighting back and fourth with the hospital, they do an MRI, come to find that it has increased and is moving towards the brain. Hospital see us and they tell us as well as show us scans, that it is a very aggressive form of skin cancer and now it’s moving towards the brain. They have given it a year or two before it gets there. So there is nothing they can do now as it does not respond to treatment and due to my mother having chronic lung disease as well as Cystic Fibrosis, surgery is not an option. 

Since being told that my mum will need palliative care soon (words from the doctors) - I don’t know how to cope? I don’t know how to feel other than angry and sad all the time. How do you deal with it? Because in all honesty, thinking about living in a world where my mother isn’t terrifies me. I’m 25 years old and just can’t seem to stop thinking about it and doing a lot of research. 

Now while they say it’s slow progressing, it’s also very aggressive. I’m trying to just get on with it and not think about it and I am not a person who deals with stress very well. Nobody prepares for this and all in all, cancer sucks! - any advice you could give me would be great. I don’t have anyone to turn to other than my partner so can get a little lonely sometimes as everyone needs someone else to turn to sometimes. 

Sorry for the very long post, and thank you in advance. 

  • Hello NikNak214

    I'm so sorry to hear about your Mum's situation and the journey that you've both been through to get to this point. Understandably it's been a difficult time for you both and natural that you're experiencing a rollercoaster of emotions. 

    Anger and sadness are normal feelings to experience after hearing that a loved one has incurable cancer and I'm sure that some of our forum members will be able to empathise with your situation. 

    You mention in your post that the only support you currently have is from your partner. I'd really encourage you to talk with your GP so that they can support you and signpost you to any local services that may be available for you. You might also want to have a look at the Maggie's website for the support they are able to offer. They also have some helpful information about support for adult carers. 

    It sounds from your post as if you and your Mum are close and I'd encourage you to be honest with her about how you're both feeling. Being able to lean on each other and support each other through the coming weeks and months will make it less stressful if you can have that open communication between the two of you. 

    You also mention that you're doing a lot of research and I presume that you mean you're spending a lot of time searching the internet for information. We know that many people turn to the internet as a source of information at times like these. What we also know is that most often people are left feeling more anxious, more worried, and more scared than before so please, try to avoid scouring the internet for information. 

    From what you've shared in your post, I understand if you don't want to talk with your Mum's care team about her diagnosis. If you think it might help to talk things through with one of our nurses you're welcome to call them on 0808 800 4040, Monday to Friday 9am to 5pm. I know they will be happy to offer any advice, information, and support they can. 

    Know that you're welcome to post here NikNak214 any time that you feel it might help to share, offload, rant of simply chat with others who may understand. We're here to support you. 

    Sending you both my best wishes, 
    Jenn
    Cancer Chat moderator 

  • Offline in reply to Moderator Jenn

    Hi, thank you for replying! I apologise it’s taken a few days for me to get back to you. 

    Thank you also for your advice, that is really helpful. 

    I just didn’t know it was possible to grieve for someone who is still alive. it feels like everything around me is moving so quickly and I’m moving in slow motion. 

    I have tried to talk to my mum about it but she doesn’t want too, which is understandable. I nearly lost my job for having a nervous breakdown and being signed off by the doctors for a few weeks to try and cope and process. I am just snappy all the time and want to cry all the time. 

    I just don’t know where to go from here, I’m scared to go to sleep just in case but then at the same time, all I want to do is stay sleeping all day. 

    god knows how my partner is putting up with me because every day I’m literally snapping at him and then I feel guilty for doing that. I just don’t know. 

  • Offline in reply to Niknak214

    Hello, I’ve been reading your post. My heart goes out to you. I have pancreatic cancer, 15months post diagnosis. As a mother, I am devastated to think I won’t be in their lives for as long as I had hoped for. I am grieving for the life I won’t have but also grieving for my children who will loose their mother. They, like you are suffering from anticipatory grief. Try and talk to your mum again. I have been honest with mine. Have tried to give them hope, as I’ve had so far. I admit I’m struggling at the moment as things look bleak. I’m waiting to start more chemo and looking at trials.  perhaps you could start making memory boxes together, develop photos, put childhood memories you have done together into the box. If you can’t have days out maybe you could watch a movie or just sit and chat. Tell her how you’re feeling. Your partner loves you and will want to support you. Communicate how you’re feeling. There is support out there. You’re not alone. Stay away from the internet. Get out for a walk instead. Exercise, learn a new skill. Sometimes it’s the simple things in life that can help. Take care of yourself 

    best wishes 

  • Offline in reply to SWillia6

    Hello SWillia6, I am very sorry to hear that you have pancreatic cancer. 

    Thank you for the advice, those are some ideas I didn’t think of to be honest. I watch films with her etc but didn’t think of doing memory boxes! 

    After reading part of your story I am hopeful for you! I really do hope that you get through this and continue to live the life you have surrounded by love and happiness! 

    I will stay away from the internet, I have discovered that it really isn’t helpful as it creates more questions etc. I am trying to be hopeful and remain as strong as I can for my mum, but it can be so hard. 

    I want you to know that you can talk to everyone on this platform, including me should you ever need a chat about anything you may be struggling with! 

    Your comment has really helped, learning that you’re a mother has actually gave me some insight on how hard it must be for mine too. Thank you so much for commenting! 

    I wish you and your family a life full of love, happiness and good memories! 

    Take care! X

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