I to was diagnosed with AML back in 2006 and was on the AML15 trial which scheduled me to have 2 courses of FLAG IDA followed by 2 courses of ARA C. After Induction course 1 it took me longer than expected to start growing any neutrophils, I think about 3 weeks and then after the 2nd course it took 62 days! And thankfully I am here to tell the tale! My 3rd course was not given until 9 months later, and only then after much discussion between the trial and various hospital consultants and I was never given the 4th course
I also have 2 daughters, aged 9 and 14 at the time, I look back and really feel my husband had been the hero throughout it all. He juggled hospital visits with looking after the girls/ the house and all the emotional strain. Thankfully he was also given time off work. He set up a blog (social media was in it’s infancy back then!) and both he and my eldest daughter kept it updated so friends and family could keep up to date with my progress. He got into a routine and brought the girls to visit me on a Wednesday and one day at the weekend. The youngest would bring reading from school and her teacher and I would exchange notes in her reading diary. When he brought them in, he would leave one of them with me and take the other for a drink in the café and then half hour later - swap! Otherwise I found it too much as they would both be understandably ‘fighting’ for attention with me, but it also gave them vital mum-daughter time
My youngest daughter remembers little of that time now, my husband tried to make it a fun time when visiting and those are her memories - singing in the car - they had a 30 min journey each way, sleepover with friends ( which gave my husband much needed breaks), and drawing on the plastic hospital aprons
Like Anna, I too felt very strange coming home after a long spell in hospital - it takes a while to adjust and fit back into the family dynamics particularly as I was feeling exhausted and couldn’t help, and I felt vulnerable out of the hospital environment.
Lastly, is there a social worker in the hospital who can help with PIP claims and maybe ESA - I saw one who filled everything in for me - a real help
Best wishes to you all