Reflections on Women’s Health by an Ovarian Cancer Survivor
By Louise Temperley
Women’s health is a subject I’m passionate about. I worked as a midwife in London before facing an ovarian cancer diagnosis at the age of 31.
A cancer diagnosis changes your relationship with your body, and it has taken me time to trust my body again.
For me, ovarian cancer rocked my very core and my sense of female identity.
I had previously taken for granted how miraculous and precious my ovaries were, on so many levels. The thought of losing them left me feeling totally bereft.
Ovaries have the power to create new life, but they also have the power to take life away. Ovarian cancer is often referred to as ‘the silent killer’ precisely because its symptoms can so easily be missed.
Even working in a hospital setting and having some medical knowledge, my ovarian cancer was very nearly diagnosed too late. I was initially misdiagnosed by two doctors; the first concluded I had trapped wind, and the second thought I had a 20 week uterus. In fact, what I did have was a cancerous tumour measuring 19 by 26cm.
I know this all sounds frightening.
If someone had told me ten years ago that I would face all this in my thirties, I would have thought, I wouldn’t be able to cope. But this year marks ten years since my first diagnosis.
I am now a mum of two; something at one time I never thought I would be able to say. However, my journey to bringing both my children home has been very rocky at times. I never had the thing of just falling pregnant. My husband and I had to really question how much we wanted to be parents, and why, because at times the road to trying to achieve it just felt so hard. My cancer diagnosis in 2011 completely derailed what I thought would be the natural course of my life.
My husband and I had been married the previous year and we were excited about starting a family. In my job as a midwife, I loved supporting women through pregnancy and birth, and helping them adjust to their new role as mothers. It was something I couldn’t wait to experience for myself.
When I first received the news that I had cancer, my initial panic was to do with whether I would still be able to have a baby, rather than worrying about the more pressing issue of whether I was going to survive. Following my first diagnosis, I was looked after at the The Royal Marsden hospital in Chelsea, where I underwent an operation to remove the ovarian cancer and my left ovary.
My consultant at this time had wanted me to have a hysterectomy followed by chemotherapy. However she knew that I was desperate to try and have a baby, and the plan changed. She agreed for me to undergo fertility treatment, with a view to obtaining and freezing embryos to be put back after I had had removal of the other ovary and the chemotherapy.
My road to becoming a mum felt at this point like an uphill battle. After six months of gruelling fertility treatment, my consultant was reassured that as I was still well, she was happy for me not to have the hysterectomy and chemotherapy, and we agreed to see if I could become pregnant naturally.
After a year, as I had still not become pregnant, we decided to try putting back my frozen embryos. This too was unsuccessful. I was devastated, as my consultant told me I couldn’t undergo any further IVF because of the risk associated with it as we knew my ovarian cancer had been hormone receptive. We decided to opt for cycles of Intrauterine insemination – or IUI - and were amazed to find out I was pregnant after the third cycle. The fact that a new life was able to be created in a body that we had at one time really questioned was going to have much life left of its own, felt miraculous. And the fact that my son was born on my birthday gave us all a sense that there was someone looking down on us.
Sadly I had a recurrence of the ovarian cancer when my son was six months old. The cancer that had been removed after my first diagnosis had appeared macroscopically to be complete, so I was horrified to think there were residual cancer cells still lurking in my body. My consultant felt it was possible that these cells had escaped during ovulation when I was poorly, and had grown over time, with this growth perhaps being exacerbated during pregnancy as a result of all the increased circulating hormones.
It was a very different experience facing a cancer diagnosis as a new mum. The only option for me was to have a hysterectomy, or pelvic clearance as my consultant referred to it which I hated. My panic this time round was to do with surviving this cancer and being around for my son. It was a straightforward decision; I didn’t want any discussion around potential fertility sparing options.
Once I had recovered from the hysterectomy, I had six cycles of chemotherapy. It has now been nearly seven years since this second diagnosis, and I have remained really well. I am BRCA2 carrier so I decided to have a risk reducing double mastectomy with implant reconstruction in October 2017. Once I was recovered from this operation, we began the adoption process. I felt strongly that I didn’t want cancer to stop me completing my family.
My daughter came home in October 2019 – she had just turned two. I can now honestly say that I feel so grateful to have experienced having a birth child, but I feel equally grateful that I have been able to experience having an adopted child. At two years old, my daughter had faced more loss in her life that most people experience in a life time. I am so proud of her spirit – and her great love for life, and her family, is deeply poignant. And if we needed any further clues that someone had it all under control, the date we first met our daughter was the anniversary of my initial diagnosis.
As I mentioned previously, we kind of did the fertility treatment the wrong way round. As a first route, women facing fertility issues may be advised to try intrauterine insemination first before IVF because it is less intrusive. IVF is often the next step after IUI. We knew we had a limited window of time, therefore we went straight into IVF. I had my treatment at the Chelsea and Westminster hospital in London. I had four cycles of IVF and in total six embryos were obtained and stored. This is a relatively low number, but of course I only had one ovary and my body was recovering from major surgery. By this point, I had become so used to just handing my body over to different medical teams, there were days when it didn’t feel like mine.
By the time we started the IUI treatment, we had gone through so much disappointment with the failed IVF treatment that I think we just felt more relaxed and fatalistic about the whole process. Our situation was unusual because there was so much pressure – with every month I wasn’t pregnant, I felt I was always one step closer to having to have a hysterectomy. I had almost accepted that I might not be able to have a baby, and I think because of this, my body responded well to the IUI treatment.
Intrauterine insemination is a very mechanical way of trying to achieve a pregnancy by ensuring all the different factors at play are at their optimum. By the time of our third round of IUI, I had been in and out of the fertility clinic at the Chelsea and Westminster for two years.
The nurses had all become friends of mine. I remember when I finally had my positive pregnancy test, I called the clinic to let them know. I was put on loud speaker in the staff room so all the nurses could hear my news. They all cheered and cried down the phone– it was a really incredible moment. I will always be so grateful for their tender care. I took my son back to the clinic to meet the team when he was a few weeks old. it was really emotional and overwhelming. I didn’t know how to begin thanking them. It was because of them that I was holding this medically unlikely, miraculous baby in my arms.
When we were going through the adoption process, I did worry about whether I could love a child that wasn’t biologically mine as much as I love my son. He is adored by the whole family – because of all we went through to get him, but also because he is just the most gorgeous child. Could we, and our extended family, feel the same about an adopted child? I have learnt that while the love I have for my children is different, it is no less intense.
I carried my son for nine months and gave birth to him. The moment he was first placed into my arms I felt the same ferocity of love and protectiveness I felt the moment my daughter first tottered into our home. My love for my daughter is underpinned by a deep poignancy. She has the most beautiful big brown eyes, but sometimes it feels so painful looking into those eyes and trying to imagine all that they have seen.
As my love for her grows and our bond deepens, the idea that there was once a time when she was not properly cared for feels more painful. I can also feel a real sadness that I didn’t give birth to her myself, and I wasn’t there to protect her as a newborn. She is a beautiful and engaging child – and I know our network of friends and family share in this deep sense of gratitude in being able to see this little girl loving life now she feels part of a family. She has experienced so much loss in her little life, and because of this she is at times deeply insecure. Some days are hard, and it has been a tough transition for Joseph. When a child has a birth sibling, mother nature provides subtle cues that their life is about to change – they can see their mum’s tummy growing, and a newborn baby does not arrive on the scene wanting to play with all your toys.
Our daughter made her arrival into my son’s world known. In adoption, every attempt is made where possible to keep a newborn baby with the birth family. If a child is to be placed for adoption, it will often take time for an adoption order to be granted while a baby is cared for in a foster placement. We knew that our second child would very likely not be a newborn, and would have experienced some level of trauma and loss. I had to go through a process of grieving for the second newborn baby I wouldn’t have. However now my daughter is home, I know I have the two children I was meant to have. Some days are difficult, but I love my daughter deeply and so we can get through these days. There are days that I forget I didn’t give birth to her myself – and after all our struggles to have a biological child, my daughter looks more like me than my son does.
I often talk to people about the chemistry which was there when we first met our daughter. The existence of this chemistry felt so important to me, as I knew if I felt that sense of recognition and excitement, love would follow.
The adoption process is complex and it can feel intrusive at times – but it has to be, because at its heart is a child who needs security and love. The social workers have to get it right. When we were going through the process, I definitely had a feeling from some close family members that they felt we were being irresponsible bringing a potentially traumatised child into our son’s life. I think there is a feeling among some people that there must be something wrong with any child that is needing to be adopted. I have seen strangers in the street who stop and talk to my daughter become visibly moved when I tell them that she is adopted – because she is just such a beautiful child. It has been the best thing seeing those family members who felt such concern about our decision just totally fall in love with her.
I would just like to comment on the course of events leading up to my ovarian cancer diagnosis. In the months leading up to this diagnosis, I had the feeling that I was putting on weight. However, at the time I was doing night shifts on the labour ward and my eating pattern was erratic. I therefore put it down to that. In the weeks before my diagnosis, I became increasingly uncomfortable. I remember feeling pain in my lower abdomen when I was walking, and I had a constant feeling of being full.
Friends and colleagues would jokingly ask me if I was pregnant – I really did look pregnant, my tummy was so distended. Even then I managed to ignore the warning signs, and convinced myself I was constipated and struggling with trapped wind. There was one shift at the hospital when I felt particularly uncomfortable and my colleague suggested I go and see an A&E doctor just down the corridor. This doctor told me that I had trapped wind without doing a proper examination, or taking a proper history. I think alarm bells would have started ringing if I had told him that my grandmother had died of ovarian cancer.
On the advice of this doctor, I went to a chemist to get some tablets to help bring down the trapped wind, and I remember when my tummy felt a bit flatter, I was able to feel a hard lump low down. As a midwife I was used to palpating tummies, and I knew my tummy just didn’t feel right. but I was still sure I was just constipated. However, I then visited my GP for reassurance. She examined me and said she could feel a mass in my pelvic area and referred me for an ultrasound. She told me at this point that she thought it likely I had an ovarian cyst.
I remember that I fainted in the street walking home from this appointment. I was then seen the following day at Kingston hospital where I worked at the time for an ultrasound. After an initial physical examination, this doctor told me it felt like I had a 20 week uterus. A scan then confirmed the mass in my pelvis. A blood test that day showed my CA125 level was around 1100, and I was sent for an urgent CT scan. The following day, I received the news - and it was a colleague of mine that had to tell me - it was cancer. My poor colleague said he didn’t sleep for three days after having to give me that news. I was so shocked, but thank God I had my husband and my dad with me in that appointment. Alarm bells had started ringing for my dad – without him telling me - and he had made the drive down from Essex to south London to be with me at that appointment.
I have a different relationship now with some healthcare professionals which I find interesting. As my medical history is so complex, I have had to become an expert in my own care and be my own advocate. I saw a lovely GP recently who I hadn’t seen previously. I went to see her as I was feeling anxious about some niggles I had been feeling. I could see the panic in her eyes when she saw my medical history on her computer, and she very kindly referred me immediately to have a CT scan at my local hospital.
This was absolutely the right course of action medically, but if I had taken a step back I might have seen that this could potentially cause me more anxiety in the long run. My local hospital had none of my previous scans. This scan picked something up which raised some concern but crucially the radiologist had no previous scans to compare the images to. It took time for them to communicate with the Royal Marsden. I had about ten days of being convinced the cancer had come back. I finally spoke to my consultant at the Marsden who told me casually ‘oh it all looks fine’. I had raced ahead in my mind and self-diagnosed, which I should know by now it the worst thing to do.After I was first poorly, I used to become so stressed before any appointments with my consultant, the term ‘hanging on every word’ took on a very real meaning for me. I would watch their body language, becoming totally paranoid and convinced that there was something they weren’t telling me. It was great I had my husband was with me at these appointments, as we would come away with very different versions of events, which we always laughed about in the end after I had been allowed a small panic attack.
I became so reliant on my consultant – without realising she had almost become like a parent figure to me. I remember her breaking the news to me that she was leaving her role at The Marsden – I was devastated – I wanted to say, ‘but what about me, you can’t leave me’.
As we are all aware, there is a crucial link between mental health and physical health. During the many periods of uncertainty I have faced over the years when I have been waiting for results, one thing I realised was the importance of self compassion. The way I spoke to myself and even the language I used became a strategy of coping for me.
I remember a few very well meaning friends saying to me when I was really going through it, ‘you are going to fight this.’ For me, I never found this idea of me fighting the cancer helpful. I didn’t want to feel that I was in a battle against my own body.
I felt I needed to be compassionate towards my body, and even towards the cancer itself, as crazy as I know this sounds. I didn’t want to see myself in a conflict situation with my own body. Following on from this point about the power of positive language; I have always been so grateful over the years when doctors have been able to use positive language with me and be reasonably optimistic about my long term outlook. I think it can be really hard for doctors to talk positively to cancer patients because they may feel worried about being accused of giving false hope if things don’t go well. I remember the surgeon who was to perform my double mastectomy saying to me ‘I’m sorry but we will need to change your breast implants in ten years time’. I honestly could have hugged him because he was just talking so casually about his total assumption that I would still be around in ten years.
I think there is also an interesting point to make about mirror neurones, which ties into the importance of positivity. People mirror the facial expressions of the person they are talking to. I therefore really tried, especially when I was going to through the chemotherapy, to be upbeat in my interactions with people. I believe people take their cues from you about how to respond to you as a cancer patient. If I was down, it sometimes led to some really depressing interactions with people, and they just didn’t know what to say to me.
With everything we have all gone through over the last eighteen months, it is not surprising if we feel more health anxiety. I have found it helpful to understand that when we are feeling anxious, we cannot think our way out of it. The most effective thing we can do to combat anxiety is find distractions that effectively calm the emotional brain.
For me, I have found this distraction in my art. During my medical challenges, it has been comforting to step back and realise that the brain has a negative bias. it takes five positive comments to erase a negative one. With this is mind, writing lists of things to be grateful for sounds cliched, but it can really effective in improving mood. These days I am much better at living in the present and not looking too far ahead. I think living in the present moment as much as we can at times of anxiety is the best advice I can give. In order to be as peaceful and content as we can be in the present moment, we need to be paying attention to our internal dialogue. Would we talk to one of our friends the way we talk to ourselves? If you were having a bad day, what would your best friend say to you. Make this your internal mantra.