Husband brain tumour, been waiting for surgery for a year!

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Hi everyone, we were told my husbands tumour came back last March 2021. A year later we are still awaiting an operation that they said he needed a week after diagnosis.

We are living a nightmare. We have the GP, our MPs all writing letter to the hospital but nothing yet. 

His tumour 5 years ago was a grade 3 oligoastrocytoma. Now who knows. We ve had 3 cancelled operations and we are literally falling apart. Our whole family is falling apart. Our kids are devastated, Im devastated. I am so mad at the hospital. 

  • Oh Joanne333, what a nightmare situation for you all. I am so sorry to hear this. I hope you get some progress soon.

    My own husband was diagnosed with a stage 4 brain tumour in Sept 2020. Surgery and treatment was all done promptly but ever since its the lack of consistency from the NHS that's driving me insane. We've seen 4 separate oncologists and been referred through 10 hospitals to date. I keep joking about our tour of the NHS- I think all we are missing out so far are the maternity hospital and the mental hospitals! 

    It is so hard for everyone involved to keep going. It's a total emotional roller coaster ride that nothing prepares you for. This group has been a great source of support for me over the past 17 months so I hope you can draw some support from it too. There's always someone around here who gets it, someone to listen and someone to offer a virtual hug when its needed.

    It’s always good to talk so remember you can also call 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.

    For now I'm sending you a huge virtual hug. Stay positive. Stay strong. Keep fighting,

    love n hugs

    Wee me xx

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

  • I hope all is well and that you are all ok and as well as can be. I’d love to know how your journey has gone and how your partner has had the attention he so deserved. 
    my thoughts are with you xx

  • Hello W J,

    Wow I haven't been on this website for years. Thank you for your message. My husband did get his surgery but unfortunately it was a grade 4 tumour this time. He fought for as long as he could, he was so determined, but he lost his battle 4 months ago. He spent his last 8 weeks in a hospice. 

    Again, thanks for your message. 

  • I’m so sorry for your loss and thank you for you replying. That meant a lot and I hope I didn’t disturb you. 
    Again I’m sure everyone here would like to express their condolences and wish you and your family good memories and peaceful days

    xxxx

  • A truly terrible experience you have been through. My Heart Breaks for you. My Partner is currently recieving pallative and we have been told there is no going forwards. We have also had issues with Timescales, Tests, Treatments etc. I can't believe that this type of thing exists in the 21st Century. I will at some point upload the full scenario, just to pass on information  more than anything. At the moment I am too upset to do that and i've found writing this difficult enough. I have lost faith in the System.

  • Hi Mr.Lovely,

    I am truly so sorry. I understand. We endured 3 surgeries in total, radio and numerous chemo. He battled brain tumours for 25 years. This journey is the toughest experience I've ever faced. And continues to be, having lost my husband of 20 years. I am so sorry you are experiencing it with your partner. You are not alone. I found alot of comfort in a group on Facebook by the brain tumour charity called 'carers of a brain tumour'. 

    You will get through this I promise. Some days you may not believe it, but you will. You find strength somehow. My thoughts are with you and your partner and please reach out if you feel you want to. My name is Nicola Grinning