Tricia used our support line when she needed someone who understood...
The first time I called the support line I was feeling really low. Val was marvellous. I felt like I was talking to a friend who I’d known for years. She gave me all the answers I needed to hear – that I wasn’t alone, and that what the doctors had told me was right. I knew that really, but I needed to speak to someone who understood what I was saying. I felt so uncertain, and Val really helped me cope with that. I knew that if I ever needed to, I could just pick up the phone to her.
Backwards and forwards
I first noticed my symptoms in February 2019 – I was in bed coughing one night and felt a funny sensation in my tummy, a sort of shudder. My period had been hit and miss for a year, but I’d had an ultrasound and everything looked fine. Then I started having real problems with my bowel. Nothing like that had ever happened to me before, so I went to the GP who put me on antibiotics.
That weekend I spotted blood in my pee so I went to A&E, but they only gave me stronger antibiotics. The following week I felt really sick. I went back to the GP and was sent for a transvaginal ultrasound, plus a larger ultrasound on my liver and further up my abdomen. Everything came back clear, but I was still feeling really unwell – I was tired, bloated and constipated.
Eventually I ended up in urgent care at the hospital. They thought I had Crohn’s disease, and I had to wait for a colonoscopy. At this point my condition worsened – I was feeling awful, being passed backwards and forwards between different hospital departments. I couldn’t eat or drink anything and I felt really dehydrated.
Finally a doctor ordered a CT scan, which showed an 8cm tumour on my ovary that was impacting on my bowel. The cancer had also spread to my stomach and omentum. A biopsy revealed that I had stage IIIc ovarian cancer.
I had to wait six weeks for an operation, and during this time I was in really low spirits. As it got closer to the op, my stomach began to swell and I couldn’t breathe. I went back to hospital, where they drained 9 litres of fluid. On the day of the operation I was taken down to the operating room at about 10am and woke up again at 3pm – they had said it would take much longer than this. I was devastated to find out that they hadn’t operated at all, the cancer had spread too far through my abdomen. I thought that meant that they weren’t going to treat me – that nothing could be done and they were just going to send me home.
That’s when I called Val. She really reassured me – she explained my position, and that it had happened to other women before me, that I wasn’t alone. I felt much better afterwards.
It was decided that I would have four rounds of chemotherapy, and after this the doctors would look again. Thankfully, I responded really well to the chemo, and they decided I could have the operation. I was over the moon! I had the operation in November of 2019, which cleared most of the cancer, and I then had two more rounds of chemotherapy.
What do I do now
In January I had a scan that showed no evidence of the disease – I never thought I’d hear that! So then when lockdown was announced and suddenly no one knew what the future held it was a really scary time for me. I was so used to seeing my doctors, and then everything just stopped and I thought ‘what do I do now?’
Then Target Ovarian Cancer started to organise online support events: Q&As, tea and chat, mindfulness sessions. They had all these wonderful things on offer and I thought ‘great, now I can get on with it’. One of the first sessions I attended was talking about recurrence, and it was exactly what I needed because I was going through that at the time.
They also launched the brand new Ovarian Cancer Community, which is an online community for everyone affected by ovarian cancer. I’ve made some new friends through the group and it’s been absolutely wonderful – now I feel that I’ve got somebody to talk to.
The best thing for me has been the support line. The feeling of talking to Val is different from when I speak to my specialists – she’s separate from the hospital team, and she doesn’t know me personally, but she’s there for me. She knew immediately how I was feeling. She has amazing experience working with people with ovarian cancer. I really feel that Target Ovarian Cancer have done an amazing job supporting me, they’re my first port of call now.
My hospital team were incredible, and they do amazing work, but then once you come away you’re sort of left to cope on your own – you might have to wait months before you can see anyone again, and at the moment that might just be a phone call not a face-to-face meeting. With the support line, you might have to leave a message, but they always call you back straight away. To know that you can just ring, and someone will always be there for you at the end of the line – that’s priceless.