Husband's prognosis

I took my husband to A&E on the 23.8.2021 as I thought he might have had a stroke, he was getting his words confused.  After a CT scan we were told he had a large mass on his brain and might have to be rushed to Leeds for surgery, we live in Bradford.  They then said they were admitting him to a ward and putting him straight onto steroids.  A week later he had an MRI can and we were told he had Lymphoma, but it was treatable.  A week later we were call into a private room and told that the mult disaplinary team which included a neuro surgeon at Leeds had confirmed that the tumour was Glioma (GBM), high grade and very aggressive and was too far spread for any treatment and they were discharging him for pallitive care, he was discharged on the 15.9.21 having never left the medical admissions ward.  We were then told we coud have a meeting with the consultant in Leeds a week later, if we wanted to.  We attending an appointment on the 22.9.21 and were shown a scan of my husbands brain and where the tumour was and where it was spread.  I then asked what the prognosis was given no treatment was possible and basically was told everyone was different, I said I had looked on line and found that without treatment 2 to 3 months and with treatment 1/2years.  He responded the first of the latter!  which has left me confused and no one is telling me, the district nurse and pallative care specialist nurses tell me to take time off work but no one will give me any idea of any timescale which is causing me a lot of distress and I would much rather no what exactly I am dealing with so I can plan.  Has anyone else been in this situation and can give me any advice?

 

Parents
  • Hi, so sorry to hear what your going through my husband had no symptoms but went to the hospital for something else and was given a scan and told he had a GBM tumour like your husband immediately put on steroids and after a 2week stay in hospital was sent home to await surgery. They managed to remove 98% and were very positive, he started radiotherapy and got through xmas/new year doing that with ease. Due to start chemotherapy March time and went for a scan (his first since surgery) early February when they gave the devastating news the original tumours had returned and also new ones on the frontal lobe. They gave him 6weeks but he is still here fighting today ️. He is becoming poorly now and symptoms are advancing quickly BUT the fact he has surpassed there time scale just proves they can only estimate time people have as each person is so individual. We take one day at a time and although my husband can't communicate with me anymore verbally I still sit and chat away and enjoy his company. Sending my best wishes to you both xx

Reply
  • Hi, so sorry to hear what your going through my husband had no symptoms but went to the hospital for something else and was given a scan and told he had a GBM tumour like your husband immediately put on steroids and after a 2week stay in hospital was sent home to await surgery. They managed to remove 98% and were very positive, he started radiotherapy and got through xmas/new year doing that with ease. Due to start chemotherapy March time and went for a scan (his first since surgery) early February when they gave the devastating news the original tumours had returned and also new ones on the frontal lobe. They gave him 6weeks but he is still here fighting today ️. He is becoming poorly now and symptoms are advancing quickly BUT the fact he has surpassed there time scale just proves they can only estimate time people have as each person is so individual. We take one day at a time and although my husband can't communicate with me anymore verbally I still sit and chat away and enjoy his company. Sending my best wishes to you both xx

Children