I first ‘met’ Aileen on Instagram, when she messaged me after I’d posted about the importance of being on the Stem Cell Register. I liked her immediately and followed her on her IG account
I often touch on the fact that pre donating your cells, the patient will be embarking on a rigorous chemo regime to wipeout their own immune system and at that point your beautiful, life saving cells are absolutely critical to patient survival.
Well, Aileen messaged me to say she has been through it, and come out the other side and would I like her to write a post?
When I read her email, I went goose bumps from head to toe. She has been to hell and back and come out smiling. She is AMAZING.
Aileen is a walking talking poster girl for Stem Cell Transplants. Here is Aileen’s Story, in her own words.
I’m Aileen. I was diagnosed with AML (acute myeloid leukaemia) on 15th September 2015 when I was 43 years old.
I was busy. Busy enjoying my life. Busy travelling. Busy doing my job. Busy being Mrs Lamb and having the best time with my amazing husband, Steve.
I’d never been properly ill in my life, and rarely saw my doctor. However after a weeks holiday in Spain I came home feeling sick.
Over the next three weeks I quickly developed a range of symptoms (which I now know are ‘typical’ blood cancer signs) – severe, persistent headache, fatigue, night sweats and breathlessness and after just two visits to my GP, I was referred for blood tests. I think my GP knew things were bad. I’m eternally grateful he did.
The nurse promised during my afternoon appointment that the results would be back in about a week. I went home and crashed out on the couch. I felt like death!
A call at 9pm that evening was an out-of-hours doctor from my local hospital. She asked who was at home with me. Just me and my husband I replied. Why? She then took a deep breath and disrupted my gravity. Cutting me loose and ensuring I was in free fall. No longer connected to reality.
Your bloods are in front of me. They look dreadful. I’d never do this normally by phone, she said. But you’ve got leukaemia. I need to have you admitted within the hour. They are waiting for you.
They, I would find out were my team. My tribe. The group of people who would save my life and who would help me regain my gravity and become connected to earth again. Eventually.
Within 24 hours of being wheeled in the dark through quiet corridors of the hospital by my husband, my love, I was a patient. A resident. Confined to isolation in Ward 8 in a small room which I’d not leave again for 22 days. I could see Edinburgh Castle from my room – its rock steady fortitude inspired me.
My treatment was to be chemo. Three gruelling rounds. First goal to get me into remission and to deal with my neutropenic sepsis. I was ill. Very ill and much closer to ‘the big man upstairs’ than I’m comfortable with admitting. Even now.
I lucked out and got the A Team looking after me. Dr. J was the main man in haematology (confirmed by my heart & lung doctor pal!) He was 100% straight with me. Always. We made a plan together. He’d do the medical magic and I’d manage my input to project ‘Save my life’ by being focused, positive and optimistic.
After 31 days in isolation, my annihilated immune system showed green shoots of recovery. I was allowed home. Two weeks later – I was confirmed to be in remission. Goal one achieved.
I knew from day one there’d be at least two more rounds of chemo. AML is a pain in the a**. It does not like staying away. The biggest guns are required to drive it out, and even then, many of us have mutations which confirm a strong likelihood of quick relapse. I had a mixed prognosis. Some good ‘flags’ and some bad! We started talking SCT.
Early doors, the medics looked at my sister to see if she was a genetic match, should a stem cell transplant be needed. She wasn’t – only 25% of people have a familial match. A month before Christmas I was told I definitely needed a SCT. I wasn’t scared. I was grateful. Grateful that I had an option. Grateful that we could continue with our plan.
What followed was a waiting game. Waiting to hear if the search had found me a match. Waiting for my immune system to begin rebuilding in preparation. Waiting to have tests to confirm my heart, lungs, liver and mind could survive a transplant.
I was 43 and other than having had AML I was fit. And healthy. And determined. I was in the best possible condition to have a transplant. It offered the best chance of ridding me of leukaemia for good.
It also had more than a 40% chance of killing me or leaving me with life changing side effects. That was a conversation I’ll never forget.
But for us hesitation was not an option. Leukaemia had interrupted my life. It was time for me to take back control and say, enough. Now we move on.
6 months post transplant
I had my transplant on 19th February 2016 following a fourth round of chemo. It was brutal. Hellish. I saw what is beneath the ‘bottom of the barrel’. But I was going to start rebuilding one wee step at a time. Onwards, one foot in front of the other. Day by day. My transplant ‘engrafted’ after just 11 days – my new stem cells had moved in and were setting up home. I welcomed them.
The six months following my transplant were hard. Every day was a grind. But each day I lived, was a day further away from Day Zero. (The term used to identify your transplant date). Day 100 felt further away than the moon.
Now, 954 days since ‘Day Zero’ I look back in awe. Awe that an 18 year old man selflessly donated his stem cells to save me. Awe that my husband and family maintained reality for me when inside they were spiralling out of control with fear. Awe that I’ve survived and my friends, my three, fellow AML warriors who shared my journey, are no longer here. Why was I the lucky one?
I believe my recovery is down to my donor. My family. My husband. My medical angels. And its is down to me. My hope. My determination. My bloody mindedness. And I recover to respect and honour my friends.
I’ve got stuff to do. The world is full of places I’m going to see. Experiences I’ve yet to have. Interruption over. Normal service is resumed.
Thankyou Aileen. Your post is wonderful to read and I’m sure I am not alone in wishing you many many many healthy days months and years ahead.
And incase you are wondering, Aileen will get the chance to meet her donor in May 2019. And I’ll be badgering her to write another post!
She’s amazing – Aileen is an ambassador for Bloodwise and you can also find her on Twitter
As ever, thanks for reading
To be a hero please please get yourself on the stem cell register
The age ranges for DKMS uk are 18-55
and for Anthony Nolan it’s 16-30.
In most cases donating your stem cells is much like giving blood. And to get on the register it’s as simple as swabbing the inside of your cheek.
And Aileen is alive because a man she doesn’t know and has never met, did that.
Steve still has his wife here, because a young man got himself on the register.
Aileen’s genetic match is a man she’s never met who got himself on the register. It’s that simple.
Amazing story. This has to be shared.
Thanks Paula. I’m honoured to be able to share my story and i hope that it inspires people to register and donate. x