Brain tumour

Hi jitush, 

I'm sorry to read that you have been diagnosed with a brain tumour. 6 weeks is a ridiculously long time to be waiting to hear back from the team about a way forward with treatment etc. Have you had a diagnosis/biopsy yet to confirm what type of tumour it is. Hopefully as they don't seem to be in any rush to sort out a treatment plan they can't suspect that it a high grade tumour? I do hope that's the case for you. 

Having young children must bring its own challenges of what to tell them when. Also it must be so hard watching them and not knowing what's likely to happen in the future. I wonder if once you've got your treatment plan you'll be able to focus on this and find it easier to stay positive. Working in the job you do I think the need to know and understand everything that's happening is greater.  Its not me that has a brain tumour,  it's my husband (he has a GBM4 diagnosed Aug 19) but there's a definite difference in how we approach appointments.  I have worked in the NHS for 30 years and I need to know detail  I question decisions made but my husband is happy to know as little as possible and trusts his oncology team. Or maybe that's just how we're wired? 

I hope that you hear something soon and you can get started on your treatment. 

Love and best wishes x

Hello jitush,

Im so sorry to hear of your recent diagnosis. Its so hard the waiting. We were told in March that my husbands tumour has recurred and he needs surgery, we re now In july and we still waiting on a surgery date. And scan results. We are literally going off our rockers here. This is his 3rd brain tumour, the first one was when he was 28. We have 2 children too, now they are teenagers but they were babies when he was first diagnosed. They are 16 and 13 now. We used to call his seizures 'the wobbles' . Children are extremely resilient as Im sure you know. My husband was given 5 years at the start of diagnosis. We are 13 years later and he is fine, he works full time and has no lasting effects of 2 surgeries and treatment, we try to take one day at a time but by far the hardest part is the waiting beforehand, And the not knowing. I just wanted to say hi, and I hope you hear some news soon xxx