Does your Disease Roller Coaster Never Stop? Jo Part III

Jo WEBSTERS story

“My HPV Surgeon just told me tests found ovarian cancer inside the cyst.” I got on the roller coaster then. This roller coaster CA125 Ovarian Tumour Marker Test involved a referral to the Christie hospital for 18 weeks of chemotherapy, a booking for a full hysterectomy just two weeks away (on my 45th birthday), and decisions about what to tell my daughters, colleagues, parents, and sister. This roller coaster never stopped, never slowed down, and never gave me breathing space to take in what I was trying to comprehend. I just moved along with it, taken along for the ride.

I soon learned what a CT scan was. And I went for a check-up after my hysterectomy, this time with a different surgeon. They told me that the CA125 story was changing and that they had found more HPV Type cancer, this time in the endometriosis that had been removed during my hysterectomy. I was grateful that they had found these things. How long would it have taken to find the tumour if I hadn’t bothered asking about my periods? Months? Years?

The Long Road Through Chemotherapy

They booked me for Ovarian Chemotherapy for Cancer that September, and finally, in January 2014, I finished 18 weeks of treatment and waited for my hair, eyebrows, eyelashes – every hair on my body – to grow back.

That Easter, I started attending Pilates classes to help my joints suffer after chemo and improve my fitness. I was walking a lot and eating healthily, ready to return to work that May. The HPV future looked bright. 2014 was a good year. We celebrated my health with a holiday to America. I returned to a new job at work that September, and all went well.

Facing Uncertainties Again

I’d had a routine checkup at the Christie the previous December, and as far as I was concerned, all had gone well. I was shocked to receive a letter that January asking me to return to the hospital for another exam, and the results needed double-checking. The tests revealed that I had an abnormal CA125 level.

The next test also gave an abnormal reading, and by April, I was being booked in for a further CT scan and investigative surgery. Things weren’t looking good. 2015 wasn’t turning out quite how I’d have liked. My HPV tag surgeon prepared me for the worst test result, but the surgery didn’t quite turn out as planned. He couldn’t find the tumours. Yes, that’s right, he opened me up and then couldn’t find the tumours that he’d seen on the CT scan.

An Unexpected Turn and a Surgeon’s Intervention

I spent another few weeks recuperating from this surgery. I felt slightly baffled and requested another exam as soon as possible because I wanted to know if the numbers were still rising. When I finally received the Ovarian Marker results, they showed tumours; however, their locations were unknown.

A meeting took place at the Christie. Groups of medical staff discussed various cases, and a bowel surgeon who had heard about my case requested to look at the scan. He was convinced that I now had bowel cancer. However, only the pathology performed after removing the tumour could confirm what was happening.

Triumph Over and Celebrating Milestones

I have a big yet beautiful scar. And I love that hpv Surgeon.

He booked me in for surgery at The Christie on 10th September 2015. It was a big operation. I have a big yet Ovarian Type beautiful scar. And I love that surgeon. He saved my life. And it was ovarian viral cancer. I’ve just celebrated being tumour-free for 5 years. I have had the privilege of seeing my daughters leave school and go on to further education. I partied like never before on my 50th birthday, delighted to see my 50s.

Advocacy and Awareness

During my ‘little adventure’, I met many women diagnosed with CA125, high levels too late. Mostly, their symptoms pointed to other issues that never got resolved. By the time doctors recognized the true nature of their disease, it was far too late for treatment to be overly effective. I feel like such a party pooper to have to tell this side of the story, but for these women, who I know would love to have a voice still and who would love the opportunity to tell their stories to save future lives, I am speaking out. Know your body. And listen to what it is saying. Also, seek medical help early. Ask for CA125 to be ruled out if you have symptoms. Look out for the women in your life. Be brave.

I don’t want to take life for granted again.

None of us should take life for granted. Viral disease isn’t a great subject, but I can talk about it from first-hand experience. It needs to be put in its place.