Final few days….
LONG POST ALERT !!!!
Hi. I am Jyo, 48 year old full time working mum, wife living with my husband and 2 girls -21 and 12.
My husband, 52 years old had a seizure in Apr 22 while walking along canal side and was rushed to hospital in ambulance. He was a healthy man, loves long walk, gardening, cycling.
He underwent various tests and was diagnosed with brain tumour. June 2022 he had his Craniotomy surgery and later after biopsy, it was confirmed that he had GBM stage 4. He was given 12-15 months with treatment. He started his radio, chemo in Aug for 6 weeks and later he was put on temozolomide. He had only 3 rounds of it and in Jan 23 it was found that the chemo wasn’t effective and he had to undergo another surgery. 2nd surgery was in Feb 23. Later they started on alternate chemo Lomustine which went on till May but that wasn’t effective either. Till now physically, mentally and emotionally he was quite strong, fine and positive. Walking, gardening continued. Doctors planned for another round of radio (10 cycles and reduced dosage. In June 23 he had 2nd seizure before the radio started and was admitted in hospital. His anti seizure medication was increased. Radio was bought forward and as per his onco this was the last possible option. He was also put on steroid - Dex. From then I hv seen he is slowly going down. Physically he was independent till the end of Dec but he didnt want to go out for walks, difficulty in getting the right words, cognitive decline. Slept a lot 16-17 hours. By 1st week of Jan, he needed support in getting out of bed, sofa etc and needed support in going upto toilet. Many a times he was quite confused when he went for toilet and wasn’t sure what he needed to do. Hand mouth coordination was slowly going down.
Jan 3rd week he had his scan followed by doctor appointment on 22nd. We were told that the tumour has started growing and nothing much can be done. Hospital handed over to hospice.
Hospital bed was given to help him and OT gave few additional equipments to help with his mobility and commode chair. But because his cognitive ability was declining he refused to use the commode chair and walking rail. He just didn’t understand. In the process he had couple of falls walking upto toilet. His weight had drastically increased because of Dex. 1st week of Feb, we started using incontinence pants to avoid the fall. Initial week he was fighting to get up. Sleep schedule increased to 20 hrs and waking time was only when we gave him food or in the evening around 5:30-8pm. Talking reduced to a great extent and was limited to some gibberish or bye,ok etc. Last week of Feb - sleep was 20+ hrs with no reaction and he used to blankly stare during his awake period.
Friday March 8th - He didn’t open his eyes at all during breakfast and lunch. We had to nudge him and force feed the food. 7pm he did a big vomit. District nurse came and gave him anti sickness, anti seizure and low dose of morphine. On call doctor came later in the night and checked his vitals. Everything was normal but they asked us to stop all oral feeds and medications as there was a choking hazard. District nurse came on 9th morning, gave similar medication by injection and decided to put syringe driver. She was supposed to come back in an hr or so but she discussed with hospice and decided to move him there. He has been in hospice since Saturday afternoon.
He has not opened his eyes since Friday morning or rather Thursday night. Few observations:
Anyone gone thru something like this ?? As per the hospice doctors days to a week is the prognosis.
I'm so sorry for your loss Jyo. I'm glad you were all there at the end though. You and the girls have been through so much.
Take care of yourself these coming days. From recent experience the stream of wellwishers can be exhausting but they'll understand if you tell them you need a break to find space and time for yourself.
Big hug,
Chris
