I am currently at home after two rounds of intensive chemotherapy for Acute Myeloid Leukaemia (AML) with 5-6 weeks in hospital each time. I am about to be admitted again for a ‘consolidation’ round of HIDAC (high dosage of Cytarabine, twice daily on days 1, 3 and 5) followed by several weeks stay, until my blood counts recover.
On my last stay, I was repeatedly moved between single and multi-occupancy rooms (e.g. four times in ten days) and spent half my time in a room where patients had respiratory infections.
The air conditioning in that room had failed before Christmas and was still not operational when I left the hospital four weeks later! The other patients had visitors all day, every day - some visitors refusing to wear face masks or even wash their hands.
The hospital has warned me to expect similar conditions during my next stay as it does not have enough single rooms to provide isolation for all AML patients. Is this normal/acceptable during periods of severe (or absolute) neutropenia after intensive chemotherapy?
Thanks, Tigger
Hi AML Tigger and welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I keep an eye on our various Blood Cancer groups.
I don’t have Acute Myeloid Leukaemia (AML) but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell was then presenting so although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
I have had significant treatments over my years including 2 Allo (donor) Stem Cell Transplants so I have had a lot of time in hospital.
What you are experiencing with regards to being in hospital, often in a ward with others unfortunately is normal…… is it ideal…… no….. acceptable….. no…… but it’s how it is and from my long experience has got progressively worse over the years.
I was in a single room for both my SCTs but always in a ward of 6 for all my weeks of chemo and often had folks like yourself in the ward on long term AML treatment.
It’s not what we would want but at times it’s the best that our stretched NHS can do……. although controlling these environments could be improved.
Back in Jan 2017…… 2+ years after my second Allo SCT I was blue lighted to hospital with severe breathing issues (I also have Asbestosis) so we thought I had developed Pneumonia again…….
I had been in an A&E cubicle all night then I was eventually transferred to a 6 bed Triage ward in the morning.
They had taken lots of bloods and cultures during the night……. then my Respiratory Consultant who is a very good friend came to see me first thing in the morning.
But he and a Nurse appeared all masked, aprons and gloves….. closed the curtains round my bed and told me I had developed the very contagious RSV Virus…… so I was in isolation…… a sign was placed on the curtain saying I was in isolation and masks, aprons and gloves had to be worn at all times.
It took a full 8 hours for me to be moved to a single room so goodness knows if any one else caught the bug
