On the 12thday of December 1988…

I was working for British Rail at Euston Station when we were informed that a horrific train accident had taken place at Clapham Junction rail station in South London. British Rail immediately chartered taxis for staff to travel down to St Georges Hospital in Tooting where they had set up emergency blood donation points all over the hospital, to accommodate the amount of people that had made the journey to give blood for this terrible accident. After a 5 hour wait for a blood test, I was told that I could not give blood! My new train colleagues made a little fun of me for a bit and then I made my way home to East London.

The following morning a contact from the blood transfusion centre at Tooting was franticly trying to contact me at work. My mum also worked with me and I was at her desk when she answered the phone - they wanted me to contact my doctor straight away. That evening I was rushed into hospital with no idea why. I just knew that I wasn’t a fan of needles and after the barrage I sustained already that night, I sort of had an idea that I may be there for a while after the 5th bag of blood.

In the morning the doctors suggested to my family that they thought I was presenting signs of Leukaemia but by the end of the day it was dismissed, and a new diagnosis of severe aplastic anaemia was highlighted. I was supported by platelet and blood transfusions and endured a number of bone marrow biopsies over the Christmas period.

During this time my family discovered the Anthony Bone Marrow foundation and were delighted to find the leading professor in the world for this disease was at St Georges Hospital London, where this whole story began!

I was referred and handed over to the careful hands of Professor Ted Gordon-Smith who became not only my doctor but my friend, visiting me on Sundays after he had played golf just to check in!

My treatment back then was little short of horrific for a young girl who had never been ill. Something as straightforward as a pic line became a major issue due to veins collapsing and arteries not where they should be, resulting in my main artery being punctured and nearly finishing everything before treatment had even started!

In April 1989, the chance of making history…

I was given a course of Horse ALG and was also asked if I would take part in a trial study with a drug called GMCSF which would consist of 2 self-administered injections day and night for 3 weeks. 6 of us would take the trial but we would not know if we received the placebo or the drug until a year later. Fortunately, I received the drug which was discovered to be a proven response in our white cells and became implemented in aplastic anaemia treatment at that time, along with other future cancer treatments.

I was in isolation for nearly 8 weeks, with no occupational therapy or counselling as these resources where just not available, so it is a great comfort to see the work of Grazina recently highlighting the need for support with mental health for long term illnesses and especially this condition.

Family time beckoned…

I slowly responded, and my counts continued to climb unsupported, then in Jan 1991, I discovered I was pregnant with my daughter! PANIC, PANIC!! My poor mum, looking back … did I put her through it!? In October 1991, my first daughter Billie-Jayne came into the world, then in 1993 her brother Bradley followed and in 1999 a bundle of ginger joy with my last daughter Kerys.

At this stage Prof Ted Gordon-Smith suggested that I may have stretched my luck as blood counts dipped close to transfusion on this pregnancy and 3 children were so much more than was promised to me in the beginning.

Things started to get a little complex…

Due to the aggressive amount of treatment that was given to aplastic anaemia patients then, it was explained that I would sustain long term side effects and conditions that could appear with a much earlier onset. Arthritis was identified running through my spine at age 30 and I underwent spinal surgery in 2008, to insert a cage in my neck due to the degenerative bones. I have restricted mobility in my facet joints at the biopsy site where there is no ligament left, so I am not able to bend.

Allergies developed to peanuts, soya, tree pollens, wheat, sulphites and mostly all painkillers and anti-biotics which have taken me to intensive care on life support due to anaphylaxis, this is closely connected to issues with my T cells.

All these conditions have kept me company since diagnosis which will be 30 years ago on the 12thDecember, argh I’m so old! LOL!!!  But so very grateful that I am able to watch my children and grandchildren grow.