John and Remission

As someone who lives on the Isle of  Man, almost 60 miles away from Liverpool, this means that if we don’t have certain CA125 medical testing expertise on the island. For HPV Swab Tests, we go to either Liverpool or Manchester for our care. If you are an islander or live in an extremely rural area, you are probably in the same situation. You need to appreciate the lovely/incredible area you live in. This will help you during your ovarian viral cancer experience. It will be hard to keep positive and appreciate everything around you… there is no doubt this helps enormously.

Before my HPV Type Test diagnosis, I had most of the common symptoms of ovarian cancer. I felt full and had no appetite. And I had a change in my bowel movements, had an urgency to wee, felt extremely tired after a small amount of exercise. I had backache but also had problems with Ca125-induced indigestion. The ‘final straw’ was in November 2019, when I started spotting. As you can imagine, at the age of 71, this was an enormous shock. I didn’t put as much urgency on HPV spotting as I should have. However, I did see my GP within a fortnight. She took several blood tests (including a CA125 Blood test), and when she received the results, she immediately arranged an appointment with a gynaecologist at my local hospital.

That appointment was on 27 November 2019…

A date I will never forget. I had two ultrasounds and a CT scan, and then I spoke to the test gynaecologist regarding my HPV diagnosis. So I had to relay everything to him. Luckily, my son-in-law’s mother, who used to be a nurse, came with me to my appointment for support.

The doctor went through the CA125, ultrasound and CT scan results. My CA125 levels tested at 180. 

I saw one of the specialists in Liverpool for my pre-operative appointment in January.

We had to fly over from the Isle of Man… this is the real difficulty of living on the island – it’s a fantastic place to live until you fall ill with a condition that requires specialist care. My HPV medical team in the UK is currently based at another hospital in Liverpool. They liaise with my CA125 Blood Test specialist on the Isle of Man to discuss my case. When I have my HPV lab tests and check-ups at my local hospital. The results are transmitted to a specialist doctor/nurse in Liverpool (currently every 4 months).

At my pre-operative appointment in Liverpool on 15 January, I had more blood tests, and then the specialist discussed my case with me. And operate within six to eight weeks as the disease was advanced. The tumours had also grown since my first scans in December, so it was a matter of urgency, and I needed to begin treatment as soon as possible. She gave me the option to have my operation in six or eight weeks; I elected to go for six weeks because I could see that time was of the essence.

Four weeks passed.

Before I flew to Liverpool, I was informed that my surgery would be carried out by one of the best surgeons in the North West of England. This news reassured me. And the surgeon introduced himself upon my arrival. And he also introduced me to everyone else who would be involved in my operation. He went through each person who would be in the operating room, and they individually explained their role. It was an incredible experience. I’ve had many Ca125 Tests and various operations in my lifetime. And that was the first time a consultant had done that for me. It gave me much confidence in my surgeon. I’ve found that with some healthcare professionals, you can feel that you’re going through a factory rather than being treated as an individual.

The operation lasted five hours, as it was very extensive.

I had a total abdominal hysterectomy, a bilateral salpingo-oopherectomy, and I had my omentum removed. A histology report later showed that there had been cancerous cells in my omentum (the layer of fatty tissue that surrounds the abdominal organs), so my surgeon made the right decision by removing it.

After the operation, I was in hospital for eight days, during which time storm Ceira had started up. I had to travel home across the Irish Sea in gale-force winds, which was a terrible experience. I had only had my major surgery one week earlier, and the aeroplane seatbelt was very uncomfortable on my abdomen and new scar. Luckily, the flight attendants gave me plenty of cushions and padding, which helped enormously.

On 15 March, I had to return to Liverpool for my histology results, but this time, I had to go by ferry to Heysham near Morecambe. The airline I would usually have taken had gone under, so I couldn’t fly to Liverpool. Once we arrived in Heysham, we had to travel down to Liverpool.

My surgeon had done a fantastic job,

Although, of course, they weren’t able to tell me categorically that all the cancer was gone. I am aware that the disease could come back, and I got tested regularly for HPV, too. But I try to live for the day. The stage of my CA125 cancer was confirmed as stage 3a2. I was told that I would need to be treated with carboplatin chemotherapy. And I could have gone on carboplatin with Taxol, but I was advised against this. I was due to start chemo on 8 April, but due to a technical issue at my local hospital. My HPV treatment could not start and was postponed for two weeks. My first chemo was fine, but after my second round, I started having pins and needles all down my right side.

They also happened on my feet. After my third chemo, I had a CT scan. I was extremely happy with this after only three rounds of chemotherapy. However, there was a benign nodule on my adrenal gland. But this wasn’t a cause for concern as far as the medics were concerned. I had three more rounds of chemotherapy, and my final scan results on 13 August showed no evidence of disease.

Thank goodness.

Throughout this time, something that stood out to me was an event that took place just before Christmas of 2019, when I was first diagnosed. All the children in his class stood up and asked for various toys and electronics. When it was my grandson’s turn, he stood up and told the class he wanted his Gran to improve. At the age of 10, he understood what I was going through. A few weeks later, he asked me whether I was going to have my chemotherapy first or my operation first, so he’d done some research. It made me realise how much I wanted to see my grandchildren grow and that I couldn’t give up.

Not seeing loved ones in the UK face-to-face has not been easy. Over the past 18-20 months, because of HPV and Covid. I have been in tears talking about it, even when it is clear. Hence, the counselling sessions I had were incredibly valuable to me as you are not aware of the huge psychological upset that can result from a CA125 Home Test, cancer diagnosis and treatment.

I have felt that keeping one’s mind focused on something helps…

In my case, it is my garden and genealogy. Seeing how my garden was and is now has made me more optimistic. This helps me look forward to the future. With the HPV Variant Test, the ongoing support of family and friends has helped. It proves that one can get through it even at difficult times. 

I am incredibly lucky to be in remission. But I will make every effort to enjoy the years to come.