after experincing headaches and vision loss/face numbness and nose bleeds for 2 months i took myself to the hospital (4 weeks ago now). GPs kept telling me it was sinisitus / hayfever / stress and to 'ride it out' giving me antibiotics and sending me on my way.
After scans and a visit to the hospital i was rushed off to have emergency surgery to save my eyesight and to remove some of the tumour to take a biopsy, a week later i was informed it was a very rare and aggressive brain tumour.
I'm 27 years old and have been completly overwhelmed and shocked by this news.
I'm looking for support from anyone who has gone through a similar situation. i have asked all specialists and anyone involved to not tell me how bad it is . im not ready to hear that yet. i need to stay positive and see light at the end of the tunnel. im realising there is not many forums for brain cancer so reaching out to anyone who has some they could share.
I am so sorry to hear that this has happened to you. I am sending prayers and best wishes to you. Xx
My cancer is different to yours but I understand your shock and feelings try to keep positive.
I am 46 and was diagnosed with a GBM brain tumour June of 2017 after having a seizure out of the blue. I was rushed to hospital and by the end of the week it had been debulked . The doctors gave me 18 months to live and I came out of surgery partially paralysed. I started radiotherapy/chemotherapy at the end of the 6 week course of radiotherapy I could hardly walk. I then had a fall, had a MRI done and the tumour had already returned. I had it debulked again even though my neurosurgeon said I would be definitely paralysed. I came out with the same movement as before. Coming out of hospital late September 2017 I went straight to my chemo oncologist(who had just come back from leave) as I wanted to start the next cycle of chemotherapy which was double the dose I was on when doing radiotherapy. He told me it was useless as it had come back so quickly. I Changed oncologist and she listened to what I wanted to do and I started the chemo once my wound had healed.
I have now done 15 cycles of chemo and even though my white blood cell count dropped last cycle I am still travelling well, yes I get tired but it’s not that bad.
My neurosurgeon can’t believe how well I am doing, there has been no sign of a return of the tumour and the cavity has even shrunk. He did tell me not to read anything about it as I won’t like what I read.
Everyone is different but I have no problem reading about it or taking about it.
I read up about what foods are good for my platelets and my white blood cells and then put them into my diet. Don’t know if they do any good but at one stage my platelets got low changed my diet and they went up and stayed up for 6 months.
Sorry if I have rambled on but I have been through a lot over the last 18 months and there is a lot more that I haven’t touched on.
If you have any questions about what I have experienced please ask I am willing to talk about it.
Be strong and take care
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