On 26 July last year I went in for surgery. I expected to be home the next evening so said goodbye to my family and hopped on the bus. I have been in a lot of pain and the surgery was to remove an unknown mass in my spine. Unfortunately it turned out to be an aggressive malignant sarcoma in my spinal chord, extremely rare that there is no known case in the world. https://en.m.wikipedia.org/wiki/Epithelioid_sarcoma
After the surgery I was brought down to the ward to recover. That is when the numbness started beginning at my toes right up to my neck. It felt like an eternity crying out for help, I could barely speak or barely breathe.
I remember waking up in ITU with a tube down my throat and completely paralyzed and unable to talk. I spent about five weeks in ITU recovering from tracheotomy and weaning myself off the breathing machine. When doubt began to set in that I would never move again I noticed a twitch in my right hand and all hope was not lost.
Spent over five months in hospital till I went home, including six weeks of radiotherapy. I could write a book about my time in hospital about the amazing staff who looked after me and the kindness that I experienced. I am still paralyzed from the chest down but I have a lot of strength in my right arm except for my fingers. Thank goodness for technology as I am able to use my phone with a stylus strapped to my wrist.
The hardest part of all of this has not been my injury but has been time I spent away from my family. When I went in I left behind my nine month old baby girl Ciara and came home to find a walking toddler. I also have the most amazing four year old girl Jessica who has sat by my bedside since the beginning. She now knows words such as catheter and suctions and physiotherapists and other medical terms no four year old should know. She has been my mini nurse. My husband has never left my side and this experience if anything has shown me how much love and support I have around me.
Since I've got home, I have taken trips out with my husband Bob by ringing a special wheelchair taxi. Taxis always have to be booked a day in advance, so most outings have been hospital appointments. Since last July we as a family have not been out together. We use to do so much together.
I am still waiting to find out how much time I have left in this world but my one wish is to get out more with my children therefore I am hoping to raise some funds towards a specialized car. It feels strange to ask for help but I ask more for my children rather than me.
I currently sleep in the sitting room in a special bed while my husband sleeps on the couch so I am not alone. I have no access to the bathroom or any other rooms except the kitchen. This is all manageable at the moment as my only wish is to get outside more. I feel like my children are losing out and that I have let them down. I did not want this to be their childhood but life as I have recently learned doesn't always turn out the way we want. It breaks my heart when I look at them. I can't help feeling extremely guilty and believe that I may have ruined their lives rather than my own. All parents understand the guilt we feel when we leave our children down.
I am waiting on scans to tell me how successful the radiotherapy is. I have received no answers if I will ever walk again or even move my hands again. I was so use to my independence but now rely on others to feed me. I won't lie this hasn't been easy, but hopefully a wheelchair accessible car will make life more tolerable and allow me some normality with my family.
From the the bottom of my heart and on behalf of my family I thank you in advance if you could spare the price of a coffee and donate to my cause. I understand there is so many worthy causes out there but I plan to get better and donate it all back to someone else who needs it in the future.
Sinead, Bob, Jessie, and Ciara