After being diagnosed with a rare tumour, Lauren has spent the past few years in a relentless cycle of operations, scans, and recovery. The impact on her mental wellbeing has been understandably huge, but she’s been empowered to take her traumatic experience and turn it into a positive
In June 2019, I was overcome with terrible lower back pain – I couldn’t walk or sit upright, and it was terrifying.
I booked an appointment with a spinal consultant who put me through a series of tests and MRI scans, and then referred me to a gynaecologist for further scans and intrusive examinations. Eventually, it was discovered that the problem was located next to my coccyx.
I was referred to a pelvic consultant who delivered the devastating news that there was a rare tumour found at the base of my coccyx (tailbone), called a sacrococcygeal teratoma (SCT). I needed an urgent major operation to remove it, and it would need to be tested for cancer. The cause of these tumours is unknown, but they are benign 75% of the time, and malignant and life-threatening 12% of the time.
At that moment, everything else just fell from my mind and all I could think about were my twin sons, who were only two at the time; I couldn’t leave them without a mother, and I couldn’t fall apart. I needed to stay strong and fight whatever was headed our way.
My first major operation was at the end of July 2019 – less than two months before my wedding. I spent a week in hospital recovering, with not just the tumour being removed, but also part of my coccyx as it had become deformed and had punctured my bowel. This caused an infection, and my bowel needed to be repaired. Fortunately, I had regular visitors, but I missed my children, and just wanted to be home with them.
The good news was that I received the ‘all clear’ a couple of weeks before my wedding, which was a huge relief. We got married on 19 September 2019, and although it was a happy occasion, I could not help but feel that it was slightly overshadowed by my surgery. I felt unwell on the day, and spent my wedding exhausted, with an open wound.
My husband and I went on our honeymoon in October 2019, although there were risks, I was determined not to let my illness or operation take something else away from me. We spent two weeks in South Africa and Mauritius, with my husband dressing my wound, and I had to make sure I kept up with the regular strong pain medication and antibiotics as I was at risk of infection.
I had only been back to work a month when I was feeling unwell, to the point that I could hardly breathe. One day, I nearly collapsed at a railway station. It was discovered that I had an infection from my recently healed wound, and my organs were beginning to shut down – starting with my lungs. I was booked in for an urgent operation in December to drain the infection, and had another few months of recovery ahead of me.
By April 2020, I was beginning to feel more like myself again; I was exercising, had stopped taking pain medication, and was (virtually) back at work. However, mentally, I felt like I was constantly looking over my shoulder.
It was around this time that I was diagnosed with PTSD. I sought help in the form of a therapist; my anxiety was at its peak as I was so worried I would have to go through another operation. I was having recurring nightmares of waking up in the middle of an operation, unable to scream.
After a routine MRI scan that summer, my worst nightmare came true – another tumour had been found and I had to go through another major operation. It was to be the biggest and most serious yet, but this time I was allowed no visitors due to the pandemic.
I completely fell apart, and everything I had worked hard to rebuild felt as though it was crumbling around me. The health risks from another operation were higher, and so I created a story book to explain the situation to my children, as they were too young to understand, that mummy would be in hospital for a while but would be back soon. It was incredibly heartbreaking to create – I didn’t know at that point what was going to happen.
This next operation was performed on 5 October 2020 – my scar was cut once again, and along with the tumour removal I also had a full coccygectomy. I spent 10 long days in the hospital, 23 hours a day, mostly alone. I missed my family, and I was incredibly lonely – when I was finally able to walk, I found myself pacing the room hooked on to my drip like a caged animal. The hospital staff were fantastic, but my conversations revolved around, bowel movements, intrusive examinations, and painful injections, which felt very isolating, and the thought of surviving another long stretch of recovery seemed imaginable.
A year later, I was still on pain medication, and struggling with intense exhaustion. On my darkest and most painful days, I find it hard to rebuild myself, and feel worlds away from the person I was two years ago. I have now got to come to terms with the fact that I’ll never be that person again, and had to accept that I may have to deal with a life of chronic pain.
Today, I’m feeling better. I am able to get out and about with a walking stick, although my energy levels are very low. I would say that the right side of where my coccyx used to be, is now 85% pain-free, which is amazing. I still have a way to go with my left side, but I’m letting my body take the time it needs to heal.
I’m still seeing a therapist regularly, which helps me to channel the anger and sadness I feel due to everything my family and I have been through. I have experienced such low points when the pain is too much, and getting my life back seems so far away, that if it wasn’t for my boys I would have put myself out of my misery.
I am also seeing a physiotherapist, and I enjoy Reiki and yoga, which I use to find inner peace amongst all the chaos.
I decided to quit my job and am now training to be a child therapist. My experience has taught me how so many babies go under the operation to remove an SCT at birth, and grow up to be children with chronic pain in their lower back from the surgery. It made me think how much the operations and pain has affected me as an adult, and I cannot imagine how this must be for children.
Although my journey is ongoing, I am thankful to be alive. I have found a support group of people who have been through what I have, and parents of children who have or are going through the same. I have been writing a blog to raise awareness of SCT, to create a positive out of a scary and life-changing experience.
To read more about Lauren’s journey, read her blog ‘What a pain in the a***’ at medium.com/@whatapaininthea___
Our expert says
Lauren’s experience presents many challenges which have, and continue to, pose great difficulty. The strength and determination that Lauren shows is inspirational. The physical and emotional impact of this process has been a test, however, with the right kind of help, she has been able to navigate her way through it. Lauren’s path has evolved – and she now is a beacon of hope and recovery for others.
Rav Sekhon | BA MA MBACP (Accred) | Counsellor and psychotherapist
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