I lost trust in my own body to let me know when something is wrong

In October 2023, my husband and I went for our first scan. We didn’t know what to expect, but realised something was wrong when the sonographer began to question our dates. 

Then she did an internal scan and told us there was no heartbeat. We were devasted. It felt even worse because my best friend and I were both experiencing our first pregnancies (we were 2 weeks apart) so I had not only let my husband down, but I felt (and sometimes still feel) I’d let my best friend down on this exciting journey together too.

A second scan at Gloucester Hospital a couple of days later confirmed that our baby had died 3 weeks earlier and we’d had a silent miscarriage. This was a shock as we’d never heard of a silent miscarriage before. 

I opted for medical management instead of miscarrying naturally, which was a simple process and all over by the time I went to bed.

Another pregnancy - and loss

Becoming a mum became a preoccupation and I’d feel so frustrated that it wasn’t happening. Five months after miscarrying, in March 2024, I tested positive again but the relief was quickly replaced by anxiety.

When I explained how I felt to our midwife she organised an early scan and we saw our baby at 6 weeks + 1 day and heard a heartbeat, which was reassuring. There was some concern around baby’s development in relation to our dates, so a second scan was arranged for 3 weeks later. 

That’s when they told us our baby had died, probably just days after we’d heard the heartbeat that had given us so much faith. This left us reeling – the first loss was difficult, but this felt even worse.

I’d already been on Tommy’s website and read that the recurrent miscarriage clinic at University Hospital Coventry (with Tommy’s National Centre for Miscarriage Research), accepts referrals after 2 miscarriages. The next morning I saw my GP, who referred us that same day.

The appointment was in October but our gynae team in Gloucester had said we could keep trying. We married on August 1st and tested positive the day we returned from our honeymoon, but we didn’t experience the same joy as the first 2 pregnancies. We were happy but cautious. Just 6 hours later I started bleeding.

A devastating diagnosis

The GP suggested we wait a week as it could be a chemical pregnancy, but a week later I was still testing positive. Although they couldn’t find baby on a scan, my bloods still indicated hCG levels in the normal range for a pregnancy at this stage.

Another week went by and it was the same – my hCG levels indicated pregnancy but there was still nothing appearing on a scan. I was sent home from hospital after being told it was a pregnancy of unknown location, but called 90 minutes later asking me to go back immediately as the doctors were concerned it could actually be an ectopic pregnancy, which may mean they’d need to remove my fallopian tube.

I had an operation the following day. Tissue was removed and it was a relief to know it wasn’t an ectopic pregnancy and I hadn’t lost my fallopian tube.

My hCG levels did fall but, 2 weeks later, began to rise again. I had to go back to hospital 48 hours later, where a number of doctors spent 11 hours debating what to do. They mentioned potentially referring us to Charing Cross Hospital if my hCG level didn't fall. 

When we got home, my husband started googling, looking for information. When he said, "Katie, I think you’ve got cancer", I read what he was reading. There was a 1 in 50,000 chance I did have cancer but I couldn't believe I’d be the one. I felt fine and well.

When Gloucester called me at work the next day to say they had referred me to Charing Cross, I asked them if I had cancer and they said it was likely. I was confused and in disbelief and went back to teaching my class to avoid processing what I had just been told.  

Two days later I was at Charing Cross for a 6 night stay with no idea what to expect. I had bloods, x-rays and a scan before Professor Seckl explained I had gestational trophoblastic disease (GTD). This meant that though the cells that attach baby to the placenta usually dissolve naturally, mine had continued to grow and become cancerous. 

I started chemotherapy that day.

My chemotherapy journey

You can’t prepare yourself for being told you have cancer. My anxiety went through the roof, and having to call my parents to let them know was incredibly difficult. 

My chemotherapy treatment entailed an intramuscular injection of methotrexate followed by a folinic acid tablet 30 hours later across 8 days. I wasn't allowed to leave the ward for the first 48 hours of treatment so the oncology team could monitor how I responded to the treatment. 

I was then discharged from Charing Cross before starting again after a 6 day break; luckily the nurses at my GP surgery and Gloucester Hospital’s Early Pregnancy Assessment Clinic could treat me, so I didn’t need to go back to London. My treatment lasted until my hCG was below 5. I then had 3 rounds of consolidation chemotherapy once my hCG was normal. 

Two weeks later, I was hospitalised with pneumonia and my treatment was postponed for a week while I was on antibiotics. I was on a ward full of elderly ladies who were dying and watching their families say goodbye to them was incredibly hard. One lady complained about her chest, the amount of people trying to help her was incredible, but she died suddenly and I couldn’t stop crying. It made me realise how fragile life is.

I did see a counsellor for GTD through Charing Cross but stopped after 6 sessions. Now I’m through treatment, I may have more sessions because anxiety is a real issue. 

All of this blindsided me and I don’t really feel safe. I had no idea I had a tumour; that and experiencing 2 silent miscarriages has made me lose trust in my own body to let me know when something is wrong.

I had my last chemotherapy in mid-December, with a check-up at Charing Cross at the end of January, and I am monitored regularly. My levels are normal at the moment but I still worry about the cancer returning.

Looking ahead

I saw Professor Quenby at the recurrent miscarriage clinic run by Tommy's National Centre for Miscarriage Research in Coventry in October, while I was undergoing my treatment for GTD.

She was so positive, just what we needed after such a horrible year. She found my vitamin D was low, so prescribed some along with recommending a higher level of folic acid and a supplement of progesterone if I get a positive pregnancy test. 

We’re going to give it 9 months to let my body heal then start trying again.

We’ve started donating to Tommy’s each month, as well as taking part in their lottery and adding our babies to the In-Memory Sky. We’ve also filled in their questionnaire around baby-loss terminology. 

I don’t like the term ‘missed miscarriage’ – it feels like it’s apportioning blame. I prefer ‘silent miscarriage’ because it happened without us knowing.

I’ve found the Tommy’s website really helpful, not only is  it full of  information but the stories shared by other women have also given me comfort. Being in this situation, it’s so very important not to feel alone.