Coping with my daughter's diagnosis and worrying about her children...

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The last six months have been horrifically life changing. My daughter (late 20s) had an out-of-the-blue, "seemingly neurological event" and this started a massive sequence of events. Unknown diagnosis, lots of guesswork, two weeks in hospital, brain tumour identified, operation in Addenbrooke's (while conscious), news that tumour could not be removed and that it was a very rare glioblastoma, stage 4, which would come back and the life expectancy is 12-18 months.  She has two very young and beautiful boys.

She has undergone a 30 day treatment of radiotherapy and chemotherapy, we are 2/3 of the way through a gap in the treatment, and she will embark on a new regime of chemotherapy next month - one week on and three weeks off - for up to six treatments. None of this treatment is about curing, it is all about prolonging life. It also seems to be dependent on scan results - the scan date is a couple of weeks away.

She has been amazing. I am a lucky man and our father-daughter relationship is beautiful. We have spent much time together and made the most of what we have right now - our philosophy has been that "the future will look after itself". But now, the future is getting nearer. I am seeing her anxiety, hearing her fear, and am struggling to hold things together to support her, my grandsons and those around us. I have good people in my life and feel plenty of love coming my way, but sometimes this feels almost unbearable.

I wanted to introduce myself here because I feel that as things progress I will need love and support from those who know what this is like, rather than those who are loving, well meaning, empathetic but do not understand these feelings. In all honesty, I do not understamnd them myslef half the time.

So, hello.  I hope to get to know some of you better soon. I don't know how this works - perhaps I will get an email if somebody reads or responds to my post. I am hoping to feel less alone in due course.

  • Hi  

    Welcome to our community, I hope you find it helpful because we all recognize that feeling of loneliness and it can be amazing how typing at each other on here can somehow help us recognize we all moved to a new normal somewhere west of the real world.

    If we look at your feelings when someone has cancer I know I recognize lots of the things I went through and of course still go through - it can be helpful though to be able to think e.g. it hurts - everyone would hurt given this and can help sometimes to make things less overwhelming.

    Friends can often be well meaning but it is so easy to not match their help with how we feel at the time. I know before my wife's diagnosis I was probably hopeless at coping with people talking about cancer. When I talked at work about our cancer journey together I found a lot of new friends who had never felt able to connect before - not the greatest subject for polite conversation generally.

    Thank you for sharing your story, it can help us all feel somewhat together and we can make a great team.

    <<hugs>>

    Steve

    Community Champion Badge

  • Hi CamperTony

    I am so sorry you are going through this with your daughter. It is very cruel when iwe have to watch our children going through something like this. My daughter was diagnosed aged 17 ( she is now 21) - incurable but with various surgeries and chemo is living her best life. No one really understands the terrible sadness and loneliness unless they have first-hand experience.  It must be hard for you also knowing that your grandchldren will suffer the loss of their mother. I hope you find the support you need. 

    All the best

    Affie

  • Thank you Steve.  I am glad to have began my journey here.  I suspect that over the next few months I will lean more and more on these forums.  At the moment I am simply struggling to process the bewildering reange of contradictory emotions.

  • Thank you Affie. I think just knowing that there are other people in a similar position to me will be helpful. I am sorry that you are having to go through this as well and can not begin to comprehend your perspective.  Yet somehow, just your presence here and your note to me mean a great deal.

  • Hi TB67.  My daughter was diagnosed with Grade 4 Glioblastoma in August.  Treatment is prolonging life but with no cure.  I have an 8 year old granddaughter and, like you, I am struggling with being the best parent and grandparent I can while feeling completely destroyed by the thought of what the future holds.  Some days I can pretend life is normal and we are just living our lives like everyone else - other days I struggle to drag myself out of bed and function at all - it is only knowing that I cannot let them down and I have to be there for them that makes me hold it together.  She is being so strong and I am so in awe of how she is handling this.  Tonight is an evening by myself and the heartbreak is overwhelming - hearing of other people who have lost their battle against this horrible, devastating cancer just hits like a tonne of bricks and I am in pieces.  I wish it was me rather than her.  Tomorrow I will put on the mask we are all wearing as people who love someone going through this awful time - because what else can we do for them other than support and love and make them our priority.  They are being so strong - the least we can do is attempt to emulate the bravery they are showing.  Tonight I cry a river because tomorrow I have to try and be a rock for her - it is the least she deserves.  My heart breaks for every parent going through this.  I hope you are making some wonderful memories with your daughter and grandchildren.  Finding the small things that make them smile - my daughter loves to dress up so we hired her a beautiful designer dress and took her for afternoon tea - so special.  Here is to making wonderful memories and being stronger than we ever thought we could be xx   

  • Thank you so much Sue. It does help to know that I am not alone, and I resonate 100% with all those feelings you have shared.