My husband was diagnosed with GBM End of February 2022. He had surgery 7th March to remove as much as possible. Biopsy said it was grade 4. The usual 6 weeks of radio and chemotherapy followed. 1st cycle started beginning of July 2022. It was stopped after 2 days because of the accumulation of side effects and huge allergic reaction to the chemo drug. No further treatment was offered.

The treatment ruined his bone marrow and in November he was diagnosed with Myelodysplasia (MDS). A course of regular red blood cell transfusion ensued. Since treatment to date, my hubby has endured eczema head to toe, cellulitis x 3, pneumonia x 2, gastroenteritis once, thrush several times in his groin, yeast infections in and behind his ears with yellow fluid dripping from them. He had Covid twice. Seizures this year. He has had constant fatigue and shuffled around like an 100 yr old ( he was 66 then).

We think his tumour started growing back at least from August this year. He started bumping into things again and his spatial awareness has decreased on his left side. He had a fall in October with suspected stroke. The CT scan confirmed what we already suspected that his tumour had come back. He has lost the use of his limbs on his left side. A catheter had to be fitted because he was unable to empty his bladder completely. His consultant has given him 3 months left to live.  He has been bed bound since coming out of hospital end of October as he wants to die at home. He was put on dexamethasone 3rd November and on 100mg morphine in his syringe driver, medazalam too, not sure how much. In process of weaning him off the dex as there are lots of side effects. The dex has been masking his symptoms and given him a better appetite. 

The at home nurse says that hubby has now plateaued. I believe this has been due to the dexamethasone. I don’t understand why they use that drug. He has no quality of life whatsoever. He just lies in bed, unable to turn, on his back 24/7. This is no life. It is horrible seeing him like this. He sleeps a lot more now, gets confused often not knowing the time of day, date etc, but can have a little conversation sometimes. It’s a waiting game. I ask the same question, “how long can he go on like this?”