Advice needed

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I was diagnosed with a stage 3 brain tumour almost a year ago. I have had radiotherapy and remain on monthly chemo. My mobility has been affected and I need help & a wheelchair to get around.

with COVID  as well and having a weak immune system I don’t get out much

what is everyone else doing 

I can’t risk an infection but otherwise I’m just at home 

  • Hey Charlotte, I’m grade 3 too - and I thought I was toast 

    But that diagnosis was almost 10 years ago now & I’m still doing ok

    i hope this helps a bit?

  • Hi. Thank you for your reply. It does help, I can’t help thinking that I won’t last long sometimes. Even though just before I started treatment my oncologist told me that she had 2 patients who were comparable to me. 1 is 10 years post treatment and doing well, the other is 5 years post treatment and isn’t doing as well but is alive 

    1. Hey  My husband was diagnosed with a grade 3 brain tumour in feb. At the moment he’s going through radiotherapy and taking chemo at the same time. 
      Hes only 35 and doing really well, so far. He’s only complained about a funny taste in his mouth. After his 6 weeks of radiotherapy, he will have a six week break and do chemo for 1 week per month for a year. Other than not working he’s going about like normal really but im
    2. nit sure if that will change later. 

      Take care x
  • HI Charlotte

    a warm welcome to the group. So sorry to hear about your diagnosis. I see some of the other group members have already reached out with their words of reassurance and support.

    This is a really supportive network of folk who all "get it". 

    My experience is in supporting my husband through his Stage 4 Glioblastoma journey. 

    Friends and family are a great source of love and support but they don't always understand. Hopefully this group will allow you to connect with others who share similar experiences with you. Regardless, everyone around here understands and there's always someone around to chat, to listen and to offer a virtual hug when its needed.

    It’s always good to talk so remember 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, I'm sending you a huge virtual hug. Stay strong. Stay positive.

    love n hugs

    Wee me xx

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

  • It depends where the cancer is, what type it is, can it be operated etc. Some patients live over 20 years.

  • Hi thank you for your reply. This is similar to me. I am 34 and have a brain stem glioma but I also have neurofibromas. The position of the tumour means it cannot be operated on. I had 6 weeks of radiotherapy which stated in July 2021 with terozolomide tablets. Since I have been on the tablets for 5 days every 28 days. I was fine initially but then after the radiotherapy finished it got worse. It may get better as the oncologist said the treatment can aggravate the area of treatment and cause swelling which is causing the side effects.

    I am lucky as I have been able to carry on working from home and work have been very supportive. It is a desk job so the mobility issues have not impacted this but i would struggle to get in to the office if I had to commute 

  • Hi Charlotte 

    That’s positive that your still able to work. My husband used to commute 60 miles to work and back but since he’s had seizures due to his tumour he’s had to send back his driving licence. He takes anti epilepsy medication but will be at least 2 years before he can drive again. Work have been really supportive to him and he doesn’t want to go back somehow after his radiotherapy. He had his brain tumour removed but the oncologist said that there’s a high chance of it returning which fills me with dread but we are being positive and we carry on as normal really. It’s obviously horrid that people go through this horrible disease  but nice knowing we are not the only ones. 

    Take care