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Referral to oncology in NI post surgery grade 2 glioma

alexandrina
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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

A

  • Hello Alexandrina

    I'm sorry to hear about your recent diagnosis and all that you've been through since. It's good to know that with support from the physical and occupational therapists you've been able to regain some of the power and mobility that you lost as a result of the surgery. 

    It's understandable that you're feeling anxious about when you may move on to the next phase of treatment, especially as two appointments have already been scheduled. Please give your nurse specialist a call. You won't be a bother to them. It's part of their role to reassure patients and deal with queries like these. I would also suggest that you tell them about the symptoms that you're concerned about. They will be able to give you some advice and support regarding these concerns and arrange for you to be seen by the team if need be. 

    If you'd like to chat things through with one of our nurses at any point for advice and support you're welcome to call them on 0808 800 4040, Monday to Friday 9am to 5pm (excluding bank holidays). You might also find this link to The Brain Tumour Charity helpful. 

    I hope you have some news and reassurance soon regarding the next steps in your treatment. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

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