Suzanne Rowley is one of our incredible staff members. Suzanne joined System People in January 2019 to support the Apprenticeship team with admin and organisation. Over the next three years her life was thrown into a whirlwind of unexpected pain and grief. Suzanne is now trying to find her way back to her new normal.
We spoke to Suzanne and she has kindly allowed us to share her story with you and how it has impacted her life. We are so grateful to have her as part of our team and want to do everything we can to support her journey. It has been hard to put into words everything that Suzanne has been through and it is incredible that she has come through it with optimism and a wonderful sense of humour.
This is something that we never expect to happen to us. We hope this story encourages you to look after yourself, check in when you need to and accept the support of the people around you.
Where it started
I started working for System People in January 2019. I immediately loved the role and my colleagues, knowing that we would soon become friends! Little did I know that before the year was out, I would have news that would change my life.
By December, having suffered for quite some time with a sore hip (I put this down to just getting old, sciatica, groin strain, menopause – you name it, I made up all sorts of excuses to ignore the on & off pain) and relentless nagging from colleagues whom I now thought of as friends, I finally went to see my GP. I was sent for an x-ray, which came back as a suspected bone infection. I was fast-tracked for a CT scan, still thinking it was just general wear & tear.
It was only a few days later I received a call whilst at work advising me to drop everything and go straight in so see my GP. The CT scan suggested that I had sarcoma in my pelvis, my GP said that this was a very rare form of cancer and I was fast-tracked again to the Freeman Hospital in Newcastle, where I had a biopsy and MRI scan.
Two weeks later, I was diagnosed with Chondrosarcoma in the pelvis, a very rare form of invasive cancer that has a high mortality rate.
Unfortunately, this form of cancer does not respond well to any form of radiation or chemotherapy. Fortunately, I was not going to lose my hair!
This was a severe diagnosis and would mean major surgery. I would lose the right-hand side of my pelvis and it was unlikely they would be able to save my leg. At this point, my options were to have surgery and a 30% chance of life, or no surgery and a life expectancy under 12 months.
Reality hit me like a tidal wave.
As a mum, daughter, wife, colleague, friend.
What would the future look like and how would we manage?
With surgery scheduled for the end of January, I had no time to reflect or process, only knowing that there was a huge risk with this surgery.
Amongst the personal trauma of taking in this information, the whole country was now starting to deal with Covid. No one yet realised the enormity of this and the impact it would have on everyone, let alone my recovery. I also lost one of my beloved Labradors around this time – had I really been that naughty in a previous life?
Working through diagnoses, surgery, and a new way of life
8 hours in surgery, 2 days in the ICU, 4 weeks in the hospital – relearning how to sit up in bed unaided and getting from a chair to a wheelchair (I even celebrated my birthday in hospital, one of my amazing nurses was kind enough to bake me the most delicious birthday cake).
Stupidly, one of my biggest fears at this time was how would I put a pair of knickers on with only one leg! I had never even considered how I would balance sitting with only half my pelvis.
There had been many things that had not been clearly explained to me at this time, or I just failed to comprehend. I can understand that the NHS’ priority was to save my life, but I did wonder ‘at what cost?’
When I was finally discharged, we were hit with a whole slew of new challenges, foremost of which was that our home was no longer suitable for me. I had no easy access to the house, the bathroom was upstairs and the doors were not wide enough for the chair to fit through. I was forced to live in our sitting room for the time being, leaving me with no personal space and a complete loss of dignity.
My husband worked tirelessly during this time, trying to arrange new living accommodation.
It was at this point, a mere two weeks after coming out of the hospital, I lost my mum suddenly. This was absolutely devastating, my mum was my rock & my cheerleader, and now, when I needed her most, she couldn’t be there. I had no chance to say goodbye and Covid meant we could not have a funeral. I still feel this loss daily.
We were fully into the first lockdown at this point. Though we were finally allocated a bungalow with disabled access, the practical challenges involved in moving homes were almost overwhelming.
This is to say nothing of the huge impact Covid has had on my ability to recover and receive essential services. No physio, no follow-up appointments at the hospital, no support. I was in considerable pain 24 hours a day and there was simply no one to ask if this was to be expected.
My ability to move independently seriously deteriorated during this time. Without the physio support, I lost muscle in my back, abdomen, and remaining leg, finding myself spending every day just sitting in my chair in pain.
My outlook on life became very bleak. I hated being dependent on others, starting to regret the decision to have surgery. I could not see a way forward. I ended up isolating myself, not wanting my pain to impact my family or friends, ‘toughing it out’.
Days rolled into weeks and weeks into months, slowly declining in every aspect of my physical and mental health with little support.
Though I had a follow up appointment at the end of April, there was no one to check my post-surgery wound or answer my questions. Was I healing appropriately? Should it be so painful? How would it ever heal with the daily pressure of me sitting on it?
9 months passed and I still had no physio support. I was now unable to stand on my remaining leg due to muscle loss.
A cancer diagnosis does not end with surgery, there are regular scans – at this stage it was every 3 months. Exactly 1 year to the day from my initial diagnosis, I took a phone call from my consultant with the results of my most recent scan. I was not prepared for what he had to say.
This most recent CT scan showed cancerous nodules within both lungs. All the professionals agreed that the cancer at metastasised to my lungs and my diagnosis was now terminal. I was advised to enjoy Christmas and see if I would make it to Easter.
Once again, my whole world was turned upside down. All the pain I had endured for the last 12 months had been for nothing!
With this information, we had to make some serious decisions as a family. We drew upon our savings, hoping to have one last family holiday and make some special memories for my two teenage girls. I made sure my will was up to date and decided on funeral arrangements.
I came to terms with the fact that I was going to die.
In some ways, it was a relief. I would no longer be in pain, I would stop feeling so sad all the time, I would no longer be a burden to my family, I would be with my mum & my dog again…
Fast forward to February 2021, I received news from my latest scan. Unusually, the nodules had changed, some now smaller. After three months of testing, it turned out it had never been cancer at all.
To most people, this would be the best news! There had been a mistake and I was going to live!
This was not the case for me after I had spent several months coming to terms & actually being at peace with the news…
I fell into a long period of depression, self-isolation and heightened anxiety over the next 12 months. I lost all my remaining confidence, terrified of leaving the house or seeing anybody.
Time to make a decision
2 years post-surgery, I made a decision.
I gave myself a talking to and decided I needed to see my friends and try to make more of my life. I had now had some physio & some therapy and I wanted to work on this.
I started meeting friends and work colleagues. I got out in the fresh air and started to gain more confidence. I even started back at work doing 12 hours a week, giving me some focus and sense of achievement. Through this whole journey, work had been extremely supportive, reassuring me that there would always be a place for me from the start. I met with Rebecca Bird and we decided together what my new role would be with the company.
I still had bleak days, but I felt like I was making progress!
Over the last 12 months I have had so many mini successes. I spent a weekend at the Calvert Trust, courtesy of The Amputation Foundation. I canoed, went on the rope swing, zip lined, & toasted marshmallows on the campfire. I have even been back to The Calvert Trust since to use their swimming pool – tricky with only one leg, and mostly in circles, but I styled it out. Being with people who are also amputees, people who had a true and unique understanding of what I was trying to overcome was life-affirming.
I also met with an amazing group of people at Watch Tree Nature Reserve as part of the Woodland Wellbeing Project, which has been incredible. I was even brave enough to attend System People’s 20th birthday party – that seems so simple, but wheeling into a room full of people took a lot of bravery….
BUT I proved to myself that I CAN.
Looking positively to the future!
I am now 3 years post-surgery and really feel better about my future. I want to get out, I want to try to be more independent. I would love to be able to go into the office with my colleagues. I want to go out with my husband and walk our amazing Springer Spaniel, Ted.
All these things I would not have thought about prior to my surgery – but living as an amputee throws up a new challenge every day.
Pre-surgery I felt invincible. Now I am left with an overwhelming feeling of vulnerability.
I was given a wheelchair by the hospital before surgery, and this is still the chair that I spend all my days in. Though it has been assessed as suitable and I now have a gel cushion to give me more stability, I still have to limit my independence.
I would love to be able to get out in an electric chair, feeling protected, secure, and stable. This is the next step for me to open up my life again. I used to love visiting local markets, trips to the Lake District, even simply throwing a ball for the dog.
I am now celebrating 3 years cancer clear instead of mourning the loss of my leg. I have a 75% chance of making it to year 5 and feel now is my time to reclaim my life. I owe a huge thanks to my family, friends, colleagues and to System People. I’m not quite back to invincible – but working on it.
Thank you SO much to Suzanne for sharing this story with us. We are proud to welcome her back into work, doing everything we can to support her in her new role in HR for System People and SP Training. We are so happy she is now able to look to the future and making positive steps for her independence. It is something that we feel so strongly about, wanting her to be able to do everything she is able.
With this in mind, we are working on getting her to that dream of an electric wheelchair. As a company, we have committed to donating £2,000 towards this.
We have also set up a Go Fund Me page for colleagues and friends to donate anything they can for Suzanne.
If you are struggling in any way, please reach out for support to any of these services. Don’t suffer in silence.
- Call NHS 111 (for when you need help but are not in immediate danger)
- Contact your GP and ask for an emergency appointment
- Contact the Samaritans
- Use the ‘Shout’ crisis text line – text SHOUT to 85258
- Full list of mental health helplines and crisis contacts