Tuesday 09 May 2023
Like me, many people think ‘that’s it’ when they hear they have cancer. After having cancer four times and receiving treatment four times, I’m quite surprised that I am still here.
I had a really busy life.
I'm a mum to two boys, who were 4 and 9 at the time of my diagnosis, and I worked as a Deputy Head Teacher in an Infant and Nursery School, which I loved.
In 2009 at 42, I was diagnosed with primary peritoneal cancer.
A full hysterectomy and chemotherapy followed and I got the all-clear.
However, seven years later, the cancer came back. Again, I needed major surgery and more chemotherapy, as well as radiotherapy and brachytherapy.
I had a long time off work for treatment and recovery but eventually, I returned.
In 2020, the cancer returned for a third time, this time in my umbilicus (belly button). Yet more treatment followed and I managed once more to go back to work.
I was devastated, in May 2021, to learn the cancer had returned for the fourth time, bringing the biggest surgery yet. I had a total pelvic exenteration – an operation which removed lots of organs from my pelvis.
As a result, I now live with disabilities. The surgery was life-saving but also life-changing.
After the surgery, I wasn’t sure how I was meant to live. It took me a long time to be able to even look at my body and I thought I might never be able to go out socially again.
I realised that a return to work this time was not possible.
I knew this was going to put a large financial strain on my family.
I was at the lowest point of my life and feeling a lot of loss.
My cancer nurse specialist suggested I visited Maggie’s to talk through what I should do next.
I met with Stephen, a vocational rehabilitation case manager.
I was still trying to get used to my new life and my new body. My anxiety was through the roof all the time.
On the day I went to speak to Stephen my 2 hour journey to Maggie’s was awful and I arrived in urgent need of a bathroom.
I didn’t tell anyone what was going on and went straight in there. I found that the bathroom had towels, a chair, a rug, toiletries ... it was a beautiful room.
Finding what I needed in the bathroom relieved my anxiety. I went into the meeting feeling fresh and comfortable.
Stephen was a real listener. After my surgery I had no strength, energy or ability to concentrate, yet I was having to make huge decisions and wade through huge amounts of information.
There was never a time limit. He would listen and give suggestions, but decisions were always mine. I applied for ill health retirement.
I then spoke to Amy, the benefits advisor. At the time I was drained from being in and out of hospital with post-operative complications.
Amy said I could just talk and she would do the rest. I wasn't capable of anything else, but I didn’t need to be.
There was a great deal of anxiety while we waited to find out if my applications had been successful.
We were planning for the worst: selling the house and my husband getting a second job to support us.
But thankfully, I was awarded a disability benefit and ill health retirement. I can’t describe the feeling of relief.
It has been a massive adjustment to my new body and life is different beyond belief.
I’ve gone from being a fit, independent, employed person in my 50s, to retired with a much slower pace of life and the need for help with many tasks from my family.
People like to remind you that ‘you’re still here’. This can be helpful but often it’s not.
Yes, I’m here, but that doesn’t stop the problems with my new body, physically and emotionally.
Acceptance has taken a long time to find.
I can’t describe the waiting period before a scan. I have them every 3 months.
The last ones have been very positive. But still, the whole family holds their breath and we almost go into slow motion.
Even though my cancer has come back four times, it is low grade. That means I might live with it for a long time and I might not.
The unknown is frightening and difficult to live with.
Previously I didn’t know this kind of enormous operation was even possible or something that people survive, let alone live a nice life afterwards, but here I am - living, laughing and loving it!
When I was diagnosed for the first time my children were 4 and 9. I prayed and prayed that I’d see them grow up. Now they’re 19 and 23!
I love watching and supporting them as they develop as adults.
How lucky am I? Long may it continue!
If you or someone you love has cancer, Maggie’s is here with you.
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