Nikki's story

“I didn’t feel I could go to the doctor and just say I was tired…”

Nikki had been feeling much more tired than usual, was experiencing some mild back pain, and had noticed she was bloated, but it was when her period lasted for over two weeks that she became concerned and went to see her GP. Shortly after, in June 2023, she was diagnosed with stage 3 ovarian cancer, aged 44.

“My period had lasted over a fortnight, so I knew then that something wasn’t right. I had been experiencing some slight back pain too, but I do suffer with a bad back sometimes, so didn’t give that too much thought – it was just a bit of back pain.

“I had also been tired and the first three months of last year I was extremely tired, but I’d been very busy in work during that period; working longer hours, evenings, and weekends. I’d also had COVID-19 just before Christmas, so I thought it was a bit of that lingering, perhaps I just hadn’t quite gotten over it.

“I didn’t feel I could go to the doctor and just say I was tired. It wasn’t like I was in bed all day; I was still getting up, I was still going to work, I was still doing things with the kids, I wasn’t so tired that I couldn’t get off the settee.

“Looking back there was also a stage where I felt really bloated, but I was on a diet at the time and had been eating a lot of fruit. When I cut back on the fruit, the bloating improved, so again that was explained away. I was also losing weight , but I was steadily losing weight. I wasn’t slimmer of the week, I wasn’t losing vast amounts and so I didn’t pick it up there either.

In the end it was my period lasting longer than usual which prompted me to go and see the doctor.”

Getting a diagnosis

“When I did see my doctor, they weren’t overly concerned, believing I was perimenopausal. They said, ‘I will run routine bloods and do an ultrasound just to be sure’. I think, even for doctors it’s hard to spot straight away, because the symptoms are notoriously vague, and they can be put down to other things.”

When Nikki’s scan identified a large cyst on the surface of her left ovary and another within her right ovary it was suggested that she have a CA125 blood test which checks the level of a specific protein that can be linked to ovarian cancer. The test came back raised and it was at this point that Nikki met with Mr Brett Winter-Roach, Consultant Gynaecological Surgeon at The Christie Private Care, part of HCA Healthcare UK.

“Mr Winter-Roach moved very quickly, within a week I had met him, had an MRI and CT scan, and he had diagnosed me with a borderline ovarian tumour. At this point he told me I needed an operation to remove the growth on my ovary and have a biopsy to confirm my diagnosis.”

An unexpected discovery

Nikki had her operation in May 2023, which was more extensive than planned, “unfortunately, during the operation Mr Winter-Roach found that my tumour had spread. This meant that as well as having a hysterectomy and my appendix out, he also had to remove the lining of my peritoneum and my omentum, which is the fat that covers our abdominal organs.

After the surgery I remember he [Mr Winter-Roach] held my hand and he said ‘you go home, you get stronger, and come back for your results in a few weeks’. It was his evident compassion that made me think, this is bigger than I had initially thought it was. And it was. The biopsies taken during my surgery diagnosed me with ovarian cancer stage 3.

Mr Winter-Roach explained that I would need to have some further treatment and referred me to his colleague, Dr Jurjees Hasan, a Consultant Medical Oncologist who he works closely with at The Christie Private Care. Mr Hasan has been fantastic, I have had six rounds of chemotherapy under his care and the way the team have worked together has been really reassuring. I rang the end of treatment bell on November 16th 2023, and I’m now on maintenance therapy to reduce the chance of my cancer coming back.

I have a daughter so at the start of my treatment I decided to have a genetic test, my biggest fear was my cancer could be related to an inherited risk and potentially affect her later in life. It was a huge relief when the test came back negative and confirmed my cancer was not genetically linked.”

The fantastic team around me

“The healthcare I’ve received has been phenomenal; the speed of my diagnosis, all the help, care and support the team have given me. Both of my consultants have been absolutely amazing, Mr Winter-Roach was able to remove all my visible cancer during surgery, getting me into NED (No Evidence of Disease) and bringing my tumour levels back to normal. Everyone from the receptionist to the nurses are fantastic, I can’t fault any of my treatment.

Being treated as an individual has made a massive difference, I feel like a person and not a patient, they took the time to understand me, and how I would like to approach my treatment. I like to be well informed, so they have responded to that need by giving me lots of information and taking the time to answer all my questions.

My Clinical Nurse Specialist, Rachel, is fantastic - she’s been there every step of the way, and she gets me; she gets my good days and my bad days. I couldn’t have gone through this without her. I haven’t got enough words to praise her with, I don’t think I will ever forget Rachel. I remember the day I rang the end of treatment bell, it was about 6.30pm and she had finished her shift, but she stayed and waited for me to ring it. It’s her compassion and empathy, she has a heart of gold, and nothing is too much trouble for her.”

A family approach

“When I was diagnosed my son was 17, he’s just turned 18, and my daughter was 14. I decided early on that I never wanted them to say cancer changed mum, I wanted to be the same person. So even at the times I felt like rubbish I’d still be ‘silly mum’, if I wasn’t eating I’d still sit at the table and listen about their days.

Me and my husband Ian made a conscious decision to be very open from the start. I didn’t want it to be that when they walked into a room that me and Ian went quiet, that it was all hush hush. We’ve allowed them to be as involved, or not, as they would like to be. My son has come to one of the chemo sessions with me, they both came to see me ring the bell. And let’s be honest, they’re young, they can go on Google themselves, so I would rather try and give them the information that’s relevant to me.

We talk about it, we’ve even managed to laugh about it. My son made a joke about me having a rare type of ovarian cancer; ‘obviously mum has got the rare kind, she never likes to be common’.

I’ve seen the psychotherapist at HCA UK, who has been incredibly helpful, and the children know about that too, ‘Mum’s off to talk today’ they say, and I have said to them, ‘If either of you want to go and talk to someone we can arrange that for you’. I’ve been really heart on my sleeve with them because it’s allowed them to speak more openly to me as well.”

 

Looking to the future

“Ovarian cancer unfortunately does have high rates of reoccurrence, if you read up on percentages they’re quite scary, so I take one day at a time. I stay here in the present and don't go too far forward.

So, at the moment I’m trying to be positive and rebuild my life. I don’t think my life will be the same as it was because cancer has changed me, for the better in many ways; it made me reevaluate work-life balance, and those times that you think ‘I’m not going to go out’, ‘I’m not going to take the kids there at the moment’, you know, ‘I can do it later’, I seize the day now. When I reflect on life, it’s the memories with my kids I want, that’s what’s most important.

My son’s 18th was a milestone which made me reflect a bit more. I wondered if I would be here for Amy’s 18th. My husband says, ‘why wouldn’t you be, everything is going in the right direction, just keep doing what you’re doing’. So that’s what I’m doing.”

Nikki's valuable advice to others

“If you or somebody you know is experiencing symptoms, regardless of how vague, go to the doctor. Don’t be embarrassed. I thought going to the doctors to say I was tired would be stupid. Don’t doubt yourself like I did - be confident that you know your body, you know if something is right or wrong. That’s one of the reasons I’m so open about my cancer, I want to drive awareness and hopefully my story will help someone get diagnosed sooner.”

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