Anticipatory Grief

Hi all, my mum was diagnosed with Stage 4 Brain Cancer in January this year and even as I write this, it seems so surreal. Her treatment has ended and she is starting to deteriorate. It seems the cognitive deficit is affecting me more, I am finding my ability to function is dwindling - handling these waves of grief is all encompassing and not one of my friends has experienced this yet, I feel alone and in pain. I don't want to sit, stand, speak, be quiet, be loud etc...it is a living nightmare watching her deteriorate and I don't know how I will get through it - and then face life without her. Life seems so bleak right now. Yet everyone goes through this at some point, it is the law of nature - doesn't feel so natural to me :(

  • HI my husband has stage 4 bowel that has gone to his lungs . He's been battling it 3 years , I'm so scared of losing him he's only 49 he's my life . You are right it's a living hell
  • i heard the term anticipatory grief for the first time this week, i didnt want to accept it is what im going through because it feels like a betrayel - my mum is not dead, so i shouldnt be grieving. especially because she says, or used to say, that she didnt believe the doctors, that she will stay alive until they invent a new cure. more recently she's not said this so much, not said much at all, just been trying so hard to struggle on, to enjoy life despite the burden of the prognosis, the pain, the nausea, the exhaustion, the many other side effects. 

    i realised i need to let myself feel these feelings though in order to be able to cope and carry on functioning, so i can be there for her. that it is natural - that other people have this too, feel this too. i relate so much to what you said vickyd, its surprising how physical it is, how all encompassing, a living nightmare, excruciating pain. and so unfair, doesnt seem natural at all. shouldnt be happening. but it is, and not just to me but to all of you. there is something about knowing other people feel like this, i dont know what, because i dont want anyone else to feel this pain. but to know you would immediately understand how i feel, it helps. this is all happening much sooner than anyone expected. out of the blue it came, she is just 54. i thought we had 30 years, or more. if im honest, i probably thought we had forever. i know you posted this a while ago vicky, where ever you are, whatever is going on, i hope you are ok. sending love. 

  • Hi Louise,

    It doesn't matter what label we put on it, this grief is as real as it gets. As patients, friends and family, we grieve for what we have already lost including our hopes and aspirations for the future as well as for what we are likely to lose and experience in the coming weeks and months. 

    Somehow, we have to go through this and still function as human beings as we need to support each other - however much we wish we could just run away and hide to nurse our pain.

    Best wishes and good luck!

    Dave 

  • Hi Alexa,

    I hope you get this message somehow. This exact scenario is happening with my Mum right now. Secondary Breast Cancer and terminal cancer in her bones. Im also 32.

    The fear I feel is unbelievable and the guilt because she wont see me marry or have kids. I'm just not coping.

    Can you help me know what to expect? :( I can't fuction or anything right now

  • Hi alexalily1983

     

    I am 26, my sister is 18 and we have just found out that my mum has been diagnosed with terminal secondary breast cancer in her bones. She's opting for palliative care, and I don't think I will have her for any longer than a year.

     

    I am so scared. So so scared. Everything in your post sounded like I had wrote it. 

     

    I don't know what to do.

     

    I'm so sorry, I've just discovered this website's forum and I know its a few years ago that you posted but I hope you are ok. I really need someone who understands what this feels like. 

     

    x

  • Hi and welcome to the forum.

    You'll find many people on here who are in a similar situation to yourself and can understand what you are going through. [@Chriss]‍ may be able to point you in the right direction.

     

    Best wishes

    Dave 

  • Hi Nina

    I'm so sorry you are going through this. It really is so hard and there are no platitudes which are likely to help. It is the most difficult thing in the world seeing someone you love decline, knowing your time left with them will be shortened and that there is nothing you can do about it. I don't think you can ever be the same person again after such an experience. 
     

    I first posted on here in September 2016. In October 2016 we learned that the secondary breast cancer had spread to my Mum's bones and she died exactly 3 months later on 2nd January 2017. She actually went into the hospice where she died on 31 December 2016 so we're almost at the 2 year anniversary. Needless to say Christmas and New Years isn't an easy time for my family.

    The last few years have been very hard, and watching my gorgeous Mum die was dreadful (I'm not sure there is even an accurate word to describe the experience, dreadful doesn't seem to quite cut it) BUT, there is a but.....

    You WILL get through it. Life will go on and I promise you will be happy again. I know it seems impossible to think about that right now, but I really do promise things will be ok. It will take time and the early weeks and months will be hard. But gradually you will be able to function, you won't feel so lost, you'll laugh and not feel guilty. I miss my Mum every day, but I can now think about her and talk about her and laugh and be happy, as opposed to just bereft. There are of course days which are still very hard, but overall I am able to look back and think of her with love and with joy, and not sadness about her death. 
     

    The best piece of advice I received, and which I pass on to anyone in a similar position is to take the time, whilst you have it, to say everything you want to say to your Mum. My Mum and I were incredibly close but we didn't have a very "sentimental" relationship. She knew I loved her and her me, and so we didn't feel the need to vocalise that very often, it was sought of just unsaid. I saw a counsellor for a brief period and she said that in her experience the thing which often troubles bereaved people the most is what they didn't say when they had the chance. She encouraged me to talk to my mum and I am so so so so so pleased I did. I told I loved her, I thanked her for being a wonderful mum, I told her I was angry that she would have been such a brilliant granny but she wouldn't have the chance and that made me sad. I told her I would miss her but she would be with me always and I would follow her example of a life well-lived. I will be forwever grateful for having that piece of advice as I know she died knowing how I felt, and nothing with left unsaid.

    I would also take some time to look after yourself. Grief, anticipatory and then afterwards, is draining as is caring for someone ill. Don't feel bad about needing time to recharge in whatever way you feel best. I run and so would take time

    off from caring for Mum to do that, and it kept me sane. Ignore what people think you should be doing and do what's right for you. The same goes for work, if you need time off: take it, but if working helps you mentally then keep it up. There is no right or wrong way to deal with this scenario and you have to make sure you are caring for yourself as well. Your Mum would want that.

    In the very nearly 3 years since my Mum died I've had a son, who is nearly two. It's awful that she never got to meet him, but life will go on, and you WILL be happy again. I really do promise that.

    wishing you strength and love x

     

  • Hi Belle.

    I am so so sorry to hear you news. Life is so unfair sometimes.

    It is natural to be afraid for what the future will hold. You don't expect to be facing the loss of your Mum at such a young age do you? I just assumed I'd be caring for my Mum in her 80/90s, that she'd be a grandma for my children and that we'd have decades more together and, so sadly, it just didn't work our that way for us.

    it was almost 3 months to the day from the date of my first post about "anticipatory grief" to the day my Mum died. She died on 2/1/17 so we're just shy of the 3 year anniversary now. I don't know if there is much advice I can offer about how to process the news as everyone manages emotions in different ways, and of course all family relationships are different. However, I hope I can share some hope and say that however bleak things seem now, I promise you will be ok. It will take time and it will be hard, but your life will go on and you and your sister WILL manage. I really do promise that. 
     

    One thing I did which really helped me after my Mum died was taking the time to talk to her whilst she was alive, and to say everything i wanted to. What those things are will differ from relationship to relationship, but for example I thanked her for being such a wonderful Mum and how lucky I was to have had her. Don't leave anything unsaid, that would be my main piece of advice. 
     

    For now, having just received such hard news my advice would be to look after yourself as much as your mum and sister. It will be hard, the coming weeks and months, and it is important to make sure you're ok both mentally and physically. Speak to your friends and family and let them help you. Sometimes it feels awkward asking for, or even just accepting, help but please do it. Don't be afraid to ask for time off work/studies etc. It's big news to process and you shouldn't be expected to be functioning as normal. So take what time you need. In my experience people will want to help and you should let them.

    I don't know you, but I can tell you that you are stronger than you think. You will get through this and you will be a changed person. You will come through the other side and I promise life will go on and it will be ok!

    sending love and strength through the dark.

     

    x

     

     

  • Thank you so much for taking the time to reply to my emotional babbling. I am blown away by how comforting it is to hear someone speak so calmly and rationally about something that I deemed so personal to me,

    The past few days have been an emotioal rollercoaster. I have to leave at somepoint to go back to work, (I live with my partner 120 miles away from my parents), and am worrying about the distance. I have a car so I can come back any time, and plan to do so, but I need to keep my own life going if only to preserve my own sanity. I'm not quite sure how to balance the guilt.

    I am so sorry about your Mum, it sounds as though you are coming out the other side with grace and strength and self awareness. I hope I can emulate that.

    x

  • Hi, 

    I hope you don't mind me jumping in and replying. My lovely mom passed away in late December. She had a rare type of cancer and had had chemotherapy. The cancer was in her lungs, breast and lymph nodes. She'd responded well to the chemo and we were told at her last ct scan that it hadn't progressed further. The oncologist had given her the option of having a break from the chemo, so she'd had none since July. Everything was good, she had some days that were better than others. But overall she was living to the best of her ability. Then she was admitted to hospital with an infection which turned out to be pneumonia. She went downhill in a matter of hours. 
     

    In terms of what to expect, you'll probably be numb. I kept taking everything in and doing what was needed but I kept expecting to wake up. It's only now, about 7 weeks later, that I am starting to grieve. I'll have intense moments of sheer, unbelievable heartache and sorrow. But they pass. I know I will feel like this for the rest of my life, but my hope is that one day I will be able to think of my mom without feeling this pain. 
     

    I hope you are with loved ones at this time.