KINGS COLLEGE HOSPITAL - clinical research department

I hate writing posts like this. Unfortunately this is my reality and has been for the past 18 months.

Just under 2 weeks ago I was admitted into hospital for gut GVHD (a common side effect of a stem cell transplant - I felt rather crap, but nothing to worry about)

The following day things took a turn. 10% blasts in my blood - active disease. A bone marrow that afternoon and results within 24 hours confirmed - relapse.

Just one week before my blood was clean, counts were great, previous marrow showed 0 disease and I was 100% donor. Totally blind sided.

Prognosis not great (months). What’s next, I don’t know.

AML is one of the most aggressive cancers - I have the worst version of AML (there are 100’s of variants). This slippery fu*ker is evading everything we’ve thrown at it.

CPX / FLAG IDA / FLAG / AZACACITIDINE + VENETOCLAX / HAM / CONDITIONING CHEMO

+ GAMMA DELTA T CELLS / CONDITIONING CHEMO + CAR T CELLS / MYELOABLATIVE CHEMO + STEM CELL TRANSPLANT

Over 250 nights spent in hospital often with sepsis or other chemo related war wounds. It’s been fun.

My body is battered. I went into this a bit of an athlete, I now struggle to walk up the stairs (won’t help that I’m now very anaemic / neutropenic). Post CAR T I weighed 47kg + my resting HR was so high I needed a wheelchair. I had a 5 day break before the pre transplant chemo started. This involved a feeding tube and not being able to swallow for 2 weeks.

I’ve decided this Sunday 16th March ([e-mail geredigeerd] - 10.30 am), I’m going to have a go at walking a marathon around Fair Heaven lake to raise money for King College Hospital clinical research department.

Sophie Lowe raised 9K on my 32nd birthday with a walk at the same location - Susan Knowles used this money to renovate the patient day room at the Vic and pay for the wards Christmas party.

As lovely as this was, ultimately buying a sofa and a flat screen doesn’t save lives. I have encountered some brilliant minds at Kings. I truly trust that any money raised for their clinical research department will help eradicate this awful disease.

Will I be able to walk a marathon who knows, I’m going to give it my best. Anything worth doing is worth overdoing.

When my consultant told me I’d relapsed she was visibly upset, she said I thought we’d done it. We almost had - it’s hard to measure almost because almost doesn’t matter.

I’m doing this so one day, the next 33 year old, the next one year old, the next one month old - isn’t an almost.

If you want to join for a couple of laps |

Location - Fair Heaven lake, lake side track.

Start Time - 10.00-10.30am , Sunday March 16th

It’s going to take several hours.