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 CamperTony

    So sorry to hear of your daughter and that you've joined this 'club'. There is also a forum specifically for glioblastoma and it's worth checking that out too. You'll find the forums here very warm and welcoming - I know I have. My wife (53) is 11 months into her glioblastoma diagnosis. She had a successful surgery and is now on monthly chemo.

    You're right that here you will find people who have a closer understanding of what you're going through and what the journey is like. And you'll find people who have way outlived their original prognosis, which gives grounds for hope and makes the journey (at times) easier.

    Good luck and sending healing thoughts to you all.

    H

  • Hi my names Debbie sorry to hear about your daughter. I’m caring for my partner who is 55 and 7 weeks ago we found out he had a Glioblastoma grade 4 inoperable and unable to have radiotherapy or chemo. We have been told 2/3 months which is unbearable he is bed bound and I care for him 24/7 with the help of Carer’s. I try to not think of the future but put all my love into enjoying every single precious day we have left. This is so hard I found it helped me to keep a diary of everyday we spend together I do this at night when he’s sleeping I find it helps clear my mind ready for another day. Any help you need I will be at the end of a tx x Debbie

  • Good afternoon hopefully I will give you another view. I apparently four years ago, started being sick, eventually the doctors got me appointment in Hospital to find out why I was feeling and being sick regularly. They found a tumour apparently I had operations but it could not removed , chemo etc didn’t work, at that time I said no more. All I remember the consultant agreed to me going home after three months in hospital, with a diagnosis of three months to live. My memory of that experience and the last fifteen years has gone, apparently the tumour has caused this. But I am still here, unfortunately cannot work , drive etc. I had my 60th birthday in March, I have got stronger looking after myself and cooking etc, care team coming in twice a day, for company Got three lovely kids and five lovely grandkids. Two were born when I was in hospital. There are twins got photographs of me holding them with tubes when I was in hospital. To add to this my wife who got me through this, decided at Xmas last year’s came out with she didn’t love me anymore, after thirty eight years of marriage and got a new boyfriend. I am sure because I still sleep in different bedrooms on hospital bed, and need a catheter because the tumour affected that part of me as well. I sure she was missing the physical side of marriage. Anyway don’t want to dwell on that. Only thing I can remember from the time in hospital, is the consultant talking to my family, that was three months was is he felt. Like your story it was hard taking each day as it comes, like got a lot stronger and know next chapter is our home is sold. I will be moving into a flat to start the next chapter with out my x. So the consultants can only give a measured estimate on their previous work. But you can beat all odds and provide the medical team with a new chapter for thir records. I believe my lovely grandkids have provided me with the determination to keep going . The older nine years notice I am different, but the younger ones this is me their grandad. 
    Hopefully this will help you and show the medical team can be wrong. I have never smoked, they think it maybe from head hard old leather football especially when they were wet.

    All the very best and indeed of stand up to cancer , let us give it the two fingers salute.

  • Hi CemperTony

    a warm welcome to the online community. So sorry to hear about your daughter's diagnosis. Life is too cruel.

    I can empathise with the journey you are on as mu husband was diagnosed GBM4 in Sept 2020. He was told he had 12-15 months... He beat all the odds and more than doubled that.  (see my profile for the gist of it)

    This online community has been a huge source of support to me over the past 3 years so please reach out here anytime. It's a safe and supportive space. There's always someone around to listen who gets it as you've already seen. You're not alone. We've got you.

    It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    There are a few other groups you might want to explore. Here's the links

    (+) Glioblastoma multiforme brain tumour forum - Macmillan Online Community

    (+) Carers only forum - Macmillan Online Community

    (+) Supporting someone with incurable cancer forum - Macmillan Online Community

    (+) Family and friends forum - Macmillan Online Community

    For now though I'm sending you  all a huge virtual hug, lots of positive energy and love and light. Stay strong.

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi,

    sorry to hear this. Its so heart breaking seeing our children suffering, when they have a whole life in front of them.I went through the same thing and doctors were not able to save him even though his cancer was curable. I know one of my friend was in the sames situation  and was  told that she would survive for a year but its been ten years and she is still alive.Stay positive

    Sending you strength x 

  • Thank you H.  It is very difficult for me to understand my daighter's mortality and, as time goes on, I am sure my feelings will change.  At the beginning of this "journey", in the unknown bewildering bit, I kept having vivid visions of her end of life. Since we have known what is happening those visions have stopped. It somehow seems appropriate and "better" to live very much for what we have now, in the present, but I am beginning to want to be better prepared for what to expect over the coming months / years.  The prognosis is not good, but I am ever hopeful.

  • Hello Debbie.

    Thank you so much for sharing your sadness and your story. I am so sorry and can not imagine how difficult this is for you. I fear my daughter's future inevitable demise and yet here you are, already living it and it has happened so quickly. It is a very cruel disease.

    I love your philosophy about putting time and energy into the present. That is what we are doing - making memories and hugging often. It is her birthday tomorrow. I also like the idea of journalling - something I have used much over the years. I might find a regukar time to sit and write each day. I do believe it will help with my own processing of my own emotions.

    I am here for you, and appreciate that you are there for me.

    Tony

  • Thank you.  I love this response.

    The reality is that we are prepared for the worst case scenario, hopeful for a better outcome and living very much in the now. I am very much guided by my daughter's emotions (which have been somewhat stilted by her tumour and treatment) and, at the moment, she is a little low. The highs will return, I am sure.

    Her tumour is remarkably rare and took a long time to diagnose. In my mind that makes an accurate prognosis difficult, and therefore gives grounds for hope. Furthermore, prognoses are based on statistics and she is not a statistic, she is an individual. I share your "two finger salute" positivity and take some comfort from your story.

    I am sorry that your ex has decisded to leave you but I love your optimism and the fight that comes across strongly in your post.

    Tony

  • Oh, how I felt your hug.  Thank you. Please accept my return hug and forgive me for holding on a bit too long.

    Your words give me great comfort. I am glad to have found this forum and feel sure that I will lean on you more and more as time and circumstances change.  I also greatly appreciate your practical advice and your suggestions about using the phone - I have done once before and am thankful for the reminder.  Sometimes, just talking helps, especially when i am talking to somebody who, like you, can relate.

    Thank you

    x