My dad died

Hi, I’m new here and I guess just wanting to speak to people who understand all this. 

My dad was diagnosed with CLL, via a routine blood test, in 2014 when he was in his early 60s. 

He was fit and active and put on Watch and Wait. 

Then he stopped producing red blood cells. Consultant suspected red cell aplasia but said it was very rare so probably not. 

Then followed a year of weekly (!) blood transfusions until the consultant conceded it was red cell aplasia. This was then solved by a single pill. I was frustrated that he’d had such a needlessly hard year. 

He then needed treatment for the CLL. He was put into a kind of lottery and he drew the standard of FCR, as opposed to newer treatment options. 

Unfortunately he had a dreadful allergic reaction to rituximab and it “basically destroyed his bone marrow”.

Then followed a year years that were like a rollercoaster. Constant infections, neutropenia, sepsis twice, lots of hospital stays. 

Throughout this time he also had some great holidays and lots of time spent with my kids, his beloved grandkids, and he never lost his sense of humour. 

During this time he was on ibrutinib, which seemed to work well for him, and if it stopped working, we were told he could try venetoclax. 

In the summer of 2024 he stopped being able to eat. Like a switch had been turned off, he just had no appetite. Dad had always been afraid of the CLL developing to Richters Syndrome, or AML. He was tired, breathless, couldn’t eat, weight was falling off him. 

We both knew the AML diagnosis was coming and sure enough it did. 

Things then moved very slowly. He was due to start a drug beginning with AZ (the name escapes me just now), but tbis was delayed due to a scan showing an issue near his pancreas. This turned out to be nothing. But they were then concerned about a “thickening of his esophagus”. This worried us hugely, as obviously he was having such difficulty eating. 

Things went very slowly, he had the first round of chemo, which he tolerated very well, the hardest bit by far was getting him to hospital for 5 days to have it, as by this point he was very weak and having to use a wheelchair and getting him in and out the car was hard (this was the man who had been rendering garden walls and building pirate ships for the kids just a few months before). 

he had an endoscopy, which he dreaded, but went through with. We were sure it would show esophagal  cancer and we both knew he couldn’t fight both. 

On the day the news came that the endoscopy did not show cancer, dad passed out in the hospital waiting room from dehydration and infection. 

what the endoscopy did show was an infection usually only found in transplant patients, CMV. 

He started on Valganciglovir to treat this but my dad never really repcovered from that day in the hospital and he died at home around 3 or 4 weeks later. 

we never got to the bottom of why he couldn’t eat. 

he was sent home from hospital over Christmas, basically to die, but nobody directly told us that. Although I guess we knew. 

He was started on a feeding tube a few weeks before he died, which mum and I had to administer at home, and I now feel awful about becuase it was too little too late. It did nothing but prolong his discomfort. 

im crying now to going to stop typing but would love to hear from anybody who can relate.