Back in 1989, I was born with a neuroblastoma in the lower part of my spine.
Neuroblastoma is a rare type of cancer that mostly affects babies and young children. It develops from specialised nerve cells (neuroblasts) left behind from a baby’s development in the womb.
Neuroblastoma most commonly occurs in one of the adrenal glands situated above the kidneys, or in the nerve tissue that runs alongside the spinal cord in the neck, chest, tummy or pelvis.
It can spread to other organs such as the bone marrow, bone, lymph nodes, liver and skin.
It affects around 100 children each year in the UK and is most common in children under the age of 5.
When I was born I had no movement in my lower body, because of this they originally thought I had spina bifida. At a month old, I was diagnosed with cancer and started chemotherapy immediately. After 11 months, I was declared in remission and movement came back to my right leg.
Due to the placement of the neuroblastoma, I have been left with a few medical issues. I’ll try to summarise these as best I can. A lot of it I don’t remember as I was a baby/child and didn’t care.
- As the tumour left me paralysed, my left leg was flaccid and could not weight bare at all. My right, though mostly normal strength, was weaker. From about thigh down, I have limited feeling in my legs though the right one has spots of sensitivity. Later in my life I realised this numbness extended to the top of my legs and around my backside. I’ve had a few corrective procedures on my legs to try help some issues like relaxing my tendons and hips, swapping tendons from front to back so that I had greater range of motion. Due to the lack of feeling I have to be aware of the temperature, especially in my left leg as it can easily go purple/blue. I also have issues with swelling due to my left leg being flaccid and not moving which means fluid accumulates in it.
My chariot and lifeline: Sunrise Argon 2 with Surge rims and Izzy Wheels spoke guards. - The tumour being in my spine means I also have a mild scoliosis, which gave me troubles with my hips. My right hip used to continually pop out of the socket as it is tilted higher than the left. When I was a child I had an operation to essentially reform my hip. It hasn’t dislocated since but has left me with horrible scar tissue and nerve sensitivity in my thigh.
- I have a neurogenic bladder and bowel. For me this means that they just essentially didn’t work really. My bladder I had to learn to self catheterise or I could never completely empty, which, if full enough would reflux back into my kidneys. This also leaves me at high risk of UTI’s of which I have probably experienced hundreds since birth. I also suffer with stress incontinence of the bladder which I am hoping can be resolved in the future.My bowel essentially is lazy. Without medication or outside input, it just doesn’t want to work. To date I have had 3 operations on it; 1 ACE, 1 redo of the ACE and finally my laparoscopic end colostomy.
The ACE operation allows patients to selfadminister enemas into the bowel near to its start(the caecum) rather than at its end (the anus orback passage). By placing the enema in thecaecum, the bowel is encouraged to contract andhopefully the whole bowel evacuates.
The ACE proved to be really painful and due to circumstances at the time, I decided against using it as a teenager and it eventually healed closed. Since then, for about 15 years, I tried to manage my bowel with medication but the pain proved to be too much and I felt constantly ill from being full all the time. I also suffered from embarrassing accidents so tried not to go out for a few days when I had my medication which with children and commitments became difficult.
- As a result of being a wheelchair user for the majority of my life, my pelvis is deformed. This wasn’t a problem really until it came to the time to discuss how my children would be entering the world. Originally it was planned that I would attempt a natural delivery. Even though this filled me with anxiety (how do you push when you have zero control of those kind of muscles usually?) I was willing to try. Thankfully, a resourceful consultant decided to consult one of my old MRI’s which showed that it would be difficult and dangerous for a baby to try pass through my pelvis. As such it was decided that a caesarean section would be the best course of action. Initially this was to be under a epidural but due to my scoliosis, this proved impossible to administer and I had to have general anaesthesia.
So hopefully that’s a basic gloss over how I got to where I am today and also shows that there can be so many reasons why people end up living the colostomy life. Through it all, I consider myself to be very fortunate. I’m glad that I had the cancer when I did as I don’t really know any different. Also that if the tumour had have been any higher, the outcome could have been much worse. It’s took me a long time to be comfortable with my lot in life, I do have the odd days where I feel like life is taking a enormous crap on me but then my little family remind me that it’s not so bad.
References:
https://www.nhs.uk/conditions/neuroblastoma/
http://www.hirschsprungs.info/Information/literature/ACE.pdf