Young daughter, mother of two, has terminal diagnosis.

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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 thank you for replying anytime you want a chat don’t hesitate to contact me just enjoy every single day Heart️

  • I can’t add to the replies that others here have given. Each story has its own journey and like some have said you can beat the odds. I hope all goes as well as it can and remember we are all here for you and your family

  • So sorry to hear your story 

    I too was diagnosed with GBM 4 

    im a retired doctor and I must say that the survival odds the doctors and dr google give are horrific and also there is v little knowledge or research in this country, compared to America and Germany ( incidentally I was diagnosed and operated on in the latter as was on holiday visiting family) 

    I chose to ignore the odds and stay positive 

    I’ve done lots of research into it and realise that everyone and every tumour is different and we all have different co morbidities, different ages and different sites of tumours… but all lumped into one prognosis. 

    I’ve done soc and now on 5/28 regime of chemo but also take many supplements which as a medic I would have previously been sceptical of including lions mane mushroom powder and cbd . I asked the long term survivors what they were doing , tumeric , magnesium , exercise and staying positive seem to be so important 

    I had my scan 6m since diagnosis last week and all was good phew !! I still take a day at a time but psychologically feel so much better knowing something is working! 

    why me I was saying but as someone else said why not me 

    lots of positive vibes coming your way 

    annie k