Oligodendroglioma Grade 3

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Hello all

Just joined this site, although I have been looking at it for some time. I haven’t got anything to ask in particular but thought I would join to share my experience just in case it could be helpful to someone else.

Diagnosed with primary brain tumour on 1st Feb 2023, had awake craniotomy on 21st February, followed by 33 days of radiotherapy and I am now 2 weeks in to chemotherapy. Bit of a whirlwind!

My experience so far (apart from having an incurable brain tumour) has been quite positive. There is so much in the media about the state of the NHS but I have found that it has been for me when I needed it. Without exception, every doctor at numerous hospitals that I have had contact with have been wonderful, so kind and caring. It has restored some of my faith in the NHS.

There have been some other positives. Hearing from and realising what wonderful family and friends you have - always thought it but now I know for sure. Husband realising he can cook after after 48 years of marriage. Daughter raising over £3400 for Brain Tumour Charity and the messages of support and prayers of people I haven’t met. Restores some faith in the human race.

Of course, it hasn’t been much fun but you just have to crack on - some days so much harder than others. I’ve accepted that if I’m having a difficult day then it’s alright for me to curl up in bed and rest without feeling guilty. I miss our old life and plans so much. I miss driving and feeling independent and more than anything I miss the caring for and the closeness of 4 beautiful granddaughters. I’m confident that I will get back to some sort of normality but it is going to take such a long time.

  • HI Bermondsey Girl

    a warm welcome to the online community. Sorry to hear about all that you are going through  but thank you for sharing your story with the group. Sounds as though its all been a bit of a whirlwind.

    I've been supporting my husband through his stage 4 brain tumour journey since his diagnosis in Sept 2020 so can empathise with a lot that you've said.  A huge well done to your daughter for her fundraising. That's fantastic!

    This is a safe and supportive space so please reach out here anytime. There's always someone around to listen who gets it, someone to hold your hand and to offer that virtual hug when its needed. 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.

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

    Love n hugs

    Wee Me xx

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