In 2012, 39-year-old teacher Sarah and her partner decided to embark on their first cycle of IVF treatment. But at the first routine scan of her ovaries, a 10cm tumour was found, and so began more than a year of diagnosis and treatment for ovarian cancer.
Now 44 and the proud owner of Jarvis the Wirehaired Vizsla, Sarah is starting to feel like herself again. We’ll let her tell you her story.
My partner and I got together later in life and we decided we would like to try to start a family. We were heading towards IVF and when it came to my first examination in the clinic in May 2012, the radiographer said ‘I haven’t seen anything like that before’. Obviously they see a huge number of ovaries so I knew that something must not be right.
The diagnosis was quite a slow process. I was one of those people who was a bit of an anomaly the whole way through and one of the small percentage of women for whom the cancer doesn’t show up on blood tests. I was referred into standard gynaecology and they were happy that it wasn’t anything unduly concerning, so I was booked in for the removal of what they thought at that point was a harmless cyst.
It was purely because we’d set aside some money for IVF, and time was important that I – thankfully as it turned out – opted to have the cyst removed privately and quickly.
The ovary had twisted about 24 hours before I went into the operation. It was only because the surgeon was there that he was able to deal with it as it happened, otherwise I would have likely presented at A&E with very serious complications.
Eventually, tests on the cyst showed there were invasive cancer cells among what they call ‘borderline’ cancer cells.
I was going to have fertility-sparing surgery. My oncology team were amazing and gave us both lots of support and information. We had a plan and I completely trusted my surgeon, so I gave him the ultimate power to make whatever decision he thought necessary during the procedure.
“A lot of my friends have a C-section scar and although they may not like their scar, it also symbolises for most, the arrival of one of the most precious things in their life. Whereas to me my scar reminds me that I will never carry a child.”
When they opened me up, it was a complete mess and it seemed very likely the cancer had spread. Actually what it turned out to be was a combination of my undiagnosed endometriosis and extensive adhesions from the laparoscopic procedure. I ended up having a full hysterectomy, appendectomy and bowel resection.
Obviously we were absolutely delighted and surprised when the histology came back and the only cancer cells were in the original left ovary. I was graded 1C.
I have no regrets about the decision that was made in theatre. My background is in teaching and social care and I completely believe in making the best decision you can with the best information you’ve got at the time. I know that we all did the right thing.
After surgery I had six courses of chemotherapy, which I found very difficult. It affected me badly both physically and emotionally as I experienced a lot of the possible side-effects including neutropenia, fatigue and ‘chemo-brain’. It was a very isolating experience and it felt counter-intuitive. I was hooking myself up to something that I knew has to do damage.
I pretty much bumped my way through chemo with quite a few delays. But during that time I had amazing support from my GP and his colleagues and my CNS who I asked to refer me to someone I could meet with in a talking therapy role.
I was aware that as well as the disease, the trauma of diagnosis and treatment there were enormous implications in terms of us not being able to start a family… I knew it was likely that I might need support to cope with it.
I was referred to the oncology psychologist who not only helped me rediscover many of my strengths and find the strategies I needed to finish chemo but pretty much kept me sane. He was amazing and I saw him for quite a long time afterwards. I wish this support were made easily available for more people. It is there and invaluable, but you often have to ask.
Having got though chemo, I had a scan which showed there was no evidence of disease. Amazingly that has been my diagnosis ever since. I’m now on six-monthly checks.
It’s three years since my chemo. It took me a long, long time – and I suspect I still might have a little way to go – to get over the fatigue.
I’ve got a scar which runs from just below my bra-line to just above my pubic bone. For the first year it was very, very red and angry. To me, it also represented incredibly painful losses, mainly of hopes and possibilities.
A lot of my friends have a C-section scar and although they may not like their scar, it also symbolises for most, the arrival of one of the most precious things in their life. Whereas to me my scar reminds me that I will never carry a child. I deliberately didn’t look at it for a long time.
The other challenge to my body happened during chemotherapy when I put on three stone in four months. I hadn’t considered that side effect or how deeply I might feel its effects.
I know people talk about body image, but I think it’s more significantly self-image.
“It felt like such a shallow thing to be worried about how you look, but actually it’s not about how you look, it’s about your perception of yourself.”
The year before, I’d been teaching, I’d been trying to start a family, I felt fit and well. I had a stable sense of self, knew what suited me and what I liked to wear and had been pretty much the same size for the whole of my adult life. At the end of the treatment, I didn’t know who I was.
I couldn’t do the things I’d taken for granted like walk to the pub without being exhausted, I struggled to follow conversations once there were more than a couple of people talking especially when people spoke quickly. I didn’t look like myself in the mirror and couldn’t even wear my own clothes as none of them fitted. And all of that together as a combination was hard hitting indeed.
Fortunately I’ve got amazing friends, who were incredibly supportive and I joined, for the first time ever, a slimming club which helped me lose the weight while enjoying the foods and drinks I love.
It’s difficult because , I really don’t want to obsess about looking good.
What I wanted to feel – and what I was feeling in the middle of all of this – was delighted that I had been so fortunate that my cancer had been caught early, by chance. I’ve met a lot of women for whom the diagnosis has not been so good.
It felt like such a shallow thing to be worried about how you look, but actually it’s not about how you look, I think it’s about your perception of yourself, and that perception has been really changed by the diagnosis and the trauma of the treatment and the impact that it has on your relationships and your life and your hopes. So it was a heady mixture.
But in the last year or so, my scar it faded and I don’t really notice it so much now. It’s become part of me. And also, I suspect that I now look a lot like I did before I was diagnosed, so as is often the case, the passage of time makes such a difference.
And we got a dog, which I know is a bit of a cliche! The big thing for me was that I knew that in order to feel better, get fitter, lose some weight and deal with the fatigue, I had to get out and walk. And having a dog was the best way to do that. We have a two-year-old Wirehaired Vizsla called Jarvis. He’s a special dog and a fabulous handful and distraction at times.
I have my next oncology follow up very soon. It will be six months since my last one. It was a big deal for me to go from three to six-monthly check ups because that’s two whole seasons.
I don’t have any symptoms that I’m concerned about, but it’s interesting that in the last week, my subconscious has started to churn stuff up.
I’m having weird dreams which are obviously linked to fear of recurrence. So while I’m not consciously concerned by it, I do notice when it affects my sleep and then the nearer it gets to the appointment, it will start popping into my mind more and more.
I had heard it might take a few years to recover from the diagnosis and the treatment. But as long as there’s progress, that’s great.
Sarah on Target Ovarian Cancer
Target Ovarian Cancer are a brilliant charity. They really listen to women and are really creative about the support they provide.
They ran a Penny Brohn collaborative residential for younger women which fell perfectly for me and was just life-changing.
Although many of the challenges of having this illness are true of all ages, there are some particular things which are more significant or different for younger women.
To sit in a room with women who’d had similar experiences and who you didn’t have to explain yourself to was absolutely amazing.
At the end of that I think we all felt that it was something really special that we’d been able to find each other.
We talked about how it would be lovely to be able to share what we had come together and realised. So Target Ovarian worked with some of the other ovarian cancer charities to put together the younger women’s guide, which I was involved with.
I really benefited from other people’s experiential knowledge, so from time to time, if I think people could benefit from me sharing my experiences, then I’m happy to do that and I want so much to help raise awareness of this disease and its possible early symptoms.
It’s all about finding the balance for me though. I want to acknowledge what’s happened to us. I want to do what I can for those women who will inevitably follow, but I have to recognise and celebrate that there is more to me than this diagnosis.
The article was originally published in Standard Issue and was written by Sam Wonfor.