My name is Ashleigh, I’m 25 and I have cancer. I was diagnosed back in February 2016 with an ependymoma grade 2, a rare type of brain and spinal tumour. In that same month, I had an operation to remove part of the tumour ranging between Cervical 3 to Thoracic 2 of my spinal cord. I woke up from the procedure unable to feel most of the left side of my body and part of my right leg.
Over those next 3 month, I was taught how to walk again. While not as good as before and on crutches, I was able to gain some mobility and independence back. In July of 2016 I underwent radiotherapy for a month. No real results were shown afterward; life continued on until about a year later in 2017 when I started feeling weak and tired. An MRI showed that my tumour was bleeding and that the blood was infected which was causing my problem. I was given dexamethasone to help control the tumour and to give me some needed strength.
The first half of 2018 was difficult; my mood was up and down, feeling sick, gaining weight, etc, all cause by my dexamethasone. On the 26th of May 2018, I tried to climb the stairs, my legs just gave up from under me. Thankfully my partner was behind me and eased me down to the floor before calling for an ambulance. I spent the night in emergency care during the following Sunday in hospital; on bank holiday Monday I was sent to Neurology where I first received my operation. I got my MRI which showed the tumour had haemorrhaged and the infected blood basically shocked the spinal cord. I spent the next few weeks trying to walk again while they tried to reduce my dexamethasone. They reduced them too fast and caused me to be so weak, I couldn’t stand up. I was then sent back to General as there was nothing more neurology could do for me and I’d just need to rehabilitate and require physiotherapy again but the Rehabilitation Unit.
Back in hospital, I did receive some physiotherapy during my stay but it wasn’t a great deal which isn’t their fault as they weren’t in a position to deal with my needs. They had so many people to see other than me, I just needed more focus. They still tried to reduce the dexamethasone which proved to be difficult as it was likely my body wasn’t producing its own natural steroid and getting weak due to it. During this time I had started getting knee pain; nothing much was thought of it at the start and was put down to the fact I wasn’t moving as much. A month went by and a space in the Rehabilitation Unit was open and I was in, so it was back to the other hospital.
During my month there I worked my butt off. I tried as many stands as possible while still trying to find that balance with my medication. A few weeks later I managed to catch both a chest and urine infection. The knee pain started to come back much worse than before and another MRI later confirmed the doctors worst fear. Due to the prolonged use of dexamethasone, the joints in my knees had developed Avascular Necrosis, a bone disease that causes the death of the bone tissue due to no blood flowing to them. In short, I would never get my mobility back. I would never is again. Everything just felt like it was falling to pieces around me. I was then sent back to hospital as there was nothing more that could be done for me apart from re-homing me to live as ‘comfortable’ as I could be.
During the next few months, I spent it mostly bedbound as my last wheelchair wasn’t suitable and a few complications with the company that were providing me with a new chair. I was in agony with back pain and was stricken with an eye problem consisting of double and blurred vision. It was first put down to my new pain medication. After more adjusting, my eye problems didn’t go away. I was given a CT scan to see what was causing the problem. The scan showed that I had fluid build up in my brain which put pressure on the back of my optical nerves and thus causing the eye problems. I was using eye patches to help this issue until I was given prisms on my glasses to fix it.
I’m still in hospital waiting for somewhere suitable to live with no discharge date in sight. Also waiting for funding for a comfortable chair for me to sit in and keep me from being bedbound again. Thankfully the issue with my eyes have improved, I’m able to see straight but it is still blurry though it’s better than nothing. Finding accommodation hasn’t been easy as finding a home in my area is proving difficult, mainly due to narrow doors and being unable to make certain adaptations.
This why I’m turning to GoFundMe for help in funding a piece of equipment that I will need in my new home and what will help me getting discharged sooner when I find a new home. The Hydrotilt recliner is designed for someone in a similar situation. It’s used for sitting in for long periods of time without causing damage to the skin, providing more comfort for wheelchair bound users.
There is only so much I can do with my own money but I also know others are going through hardships of their own. If you can spare some money, great and if not, that’s fine too; as mentioned before people have their own worries but if you can maybe share my story with your friends and family. Thank you for reading.