Grade 2 oligodendroglioma, oncology referral in NI

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Hello

I live in Northern Ireland.

I am recently (oct 2023) diagnosed with grade 2 oligodendroglioma. I had surgery for resection and biopsy very quickly which was scary but great! 
Post op o lost all power and mobility left ahdn side of body, alongside other side effects. This has slowly came back thanks to OT and physio input.
I am waiting for an oncology referral which has been re-schueled twice. I am starting to get very frustrated and anxious.I know it can be a good sign, but still re frustrating. I am having a few strange (maybe normal) symptoms post op (90% of the tumour was removed) and waiting on neurology referral too. Neurosurgical review and mri for march. I could phone my nurse specialist but don't want to be a bother.

Does anyone else in NI have reference to waiting times or a plan? I know itll be chemo and radio. Also waiting on outpatient physio referral which will be good but I also think things have improved so fast themselves and with my own activity and every day movement.

Many thanks

  • Hi,

    I had surgery originally 6 years back in 2016. Although they aren't dangerous, they can sometimes mutate into up the scale. I currently have a Grade 3 tumour. Including having a 6 week, everyday of the week non stop radiotherapy. Also on my 5th cycle of chemotherapy. I won't sugar coat anything but get ready some hair loss, in the area that's being treated. Also transfusion into your wrist. And you will feel very sick after, as it breaks down your immune system. They are scheduled 6 weeks apart.

    Don't hesitate to ask me anything else!

  • Hi, 

    Sorry for the very late reply. First of all how are you doing now? 

    Secondly sad to hear its come back again. Maybe call the specialist nurse, if you havent already? 

    Just be ready for 6 weeks worth of radiotherapy, everyday! Followed by 6 cycles of chemotherapy.

    Amar 

  • HI

    a warm welcome to the online community.

    I live in Scotland so can't comment on NI witing times but while I supported my late husband through his Glioblastoma journey I worked on the premise that if I was worrying about something, I would ask the question. You are not being a bother by calling the nurse specialist. That's what she's there for. They would far rather you called, particularly if you are getting anxious than sat at home fretting. 

    This is a safe and supportive group so I'm pretty sure someone from NI may have some guidance for you. There's always someone about 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 covered.

    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 lots of positive energy and a huge virtual hug.  Grant yourself some peace of mind and make that call.

    love n hugs

    Wee Me xx

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