INTRODUCTION: THE COST OF SUCCESS
By society’s standards, my life before cancer was great. Ambitious from a young age, I had completed my PhD a few months shy of my 26th birthday and had since dedicated my working life to a career as a researcher. My passion for improving the healthcare system and promoting holistic health and wellbeing motivated me to juggle a 140 mile daily commute, a full time job, volunteering and part-time study to train as a psychotherapist.
My ‘spare time’ (I use that term loosely) was spent exercising. I was passionate about running and lifting weights and attended regular fitness classes and personal training sessions. Admittedly I got a huge buzz from the challenge, the pain and the competitive nature of training.
On the surface I had ‘optimal health’. I exercised daily, I ate healthily, I never smoked and I very rarely drank and never in excess. Yet, somehow, I still found myself facing a death sentence at just the age of 30. What had gone wrong?
A cancer diagnosis doesn’t start the day you’re told you have cancer. It’s not a simple case of one day you don’t have cancer and the next you do. No, the journey starts long before that. In fact, recent research studies indicate that most cancers are growing in the body undetected for up to eight years before a diagnosis.
Of course, cancer gently whispers to us for months (if not years) before we seek answers that will lead to a diagnosis. Not that we ever listen to those first whispers. No, we are far too busy living for ‘nonsense’ like that.
My first whisper came in October 2013, more than two years before my diagnosis.
I was busy with preparations for our wedding, which was due to take place just two months later. I was marrying my best friend and I couldn’t wait. Everything was in place and, as far as any bride can be, I was relaxed and calm. (Well, that’s my story and I’m sticking to it – my husband, of course, may have a different opinion about my stress levels.)
I’d spent the previous six months training for the 2014 London Marathon, having secured a rare place through a charity. I’d dedicated each day to running at least three miles, lifting weights and seeing my personal trainer. Yes, this was while also doing a daily three-hour commute, a full time stressful job and planning an imminent wedding. Success comes at a price don’t you know? At least that’s what I had thought at the time. It’s now, however, a price I’m no longer willing to pay.
To say I was putting myself under unnecessary pressure would be the ultimate understatement, but I didn’t see that. To look at me I was the vision of impeccable health and even had some subtle abdominal muscles to show for it. Weight was falling off of me and at each dress fitting my wedding dress needed altered, much to the annoyance of the seamstress. I thought I was happy and society encouraged this. A day didn’t pass where I wasn’t rewarded with comments of praise and admiration for juggling life and spinning every plate imaginable. Well-meaning phrases like ‘I don’t know how you do it. It’s incredible’ became the norm for me and I felt encouraged to do more, to push more, to keep trying harder at all costs.
Then, one Sunday while on an early morning run a speeding car on the wrong side of the road knocked me down. I hit my head as I fell and a hospital visit confirmed I had a mild concussion. I was told that I needed to rest. However, at this stage there was no stopping me. Against medical advice, I continued to train after only a couple of days on the sofa. Something was different though. On my third run following the accident my left leg gave way and I had to call my husband to collect me. Then, in the days that followed my left hip began to cause me constant pain, even while resting. Within a couple of weeks I was unable to exercise at all and using crutches every day. I was devastated. Exercise was my life. I felt so lost.
Over the following months I had regular ultrasounds, x-rays, an MRI and steroid injections into my hip joint. However, no one could pinpoint the exact cause of my pain. They did, however, note at the time that my left ovary was enlarged and my bloods were showing elevated hormone levels and a high white blood count.
‘It’s just your age,’ I was told. ‘Nothing to worry about and definitely not the cause of your hip pain.’ On reflection now, I’m not so sure. Research indicates that hip pain is one of the first symptoms of ovarian cancer, not to mention that my enlarged ovary should have been a warning sign.
Over the course of the following year I had a steroid injection into my hip every time the pain reached a point where I couldn’t go about my day-to-day activities. Exercise was a thing of the past and, regrettably, I withdrew my place in London Marathon.
Fast forward a year and I was a very different person. By early 2015 I was tired all of the time, gaining weight and super stressed and irritable. I binged on sugar daily, sometimes eating my entire daily-recommended calorie allowance in sweets and chocolate, in addition to three large meals. As a result, I no longer recognised the person I saw in the mirror. Long gone was my athletic frame and, although I was still only a petite size 12, I was disgusted about my health. The praise I had learnt to crave no longer came and a dark cloud of self-loathing consumed me.
Around the same time my husband and I began making plans to start a family. We had now been married for over a year and the time felt right. It was a new chapter and I felt excited about the prospect of something positive to focus on.
As soon as I stopped taking the contraceptive pill, however, I was in constant pain. My hip started hurting again, my abdomen was constantly bloated and I was frequently experiencing spasm-like pain.
‘It’s just your body readjusting,’ I was told by my GP. ‘It’ll pass.’
Then, in July 2015, my dreams came true. I finally discovered I was pregnant.
I’d just about given up all hope of it ever happening. The stress had become all-consuming, as frustration and anxiety filled my every thought. Yet, there we were staring at a positive pregnancy test. We were finally about to become parents. I didn’t know whether to laugh or cry. I was so excited!
A follow up pregnancy test, however, was negative.
‘It’s just a miscarriage. It’s perfectly normal,’ came the GP’s dismissive response to my concerns. ‘Such a shame, really’ she added, ‘I’d been looking forward to some good news today. Go home and rest. You’ll probably have some bleeding, but that’s perfectly normal.’
I was devastated. ‘Perfectly normal?’ I thought. ‘How could something so awful be normal?’
I’m not sure if it was instinct or denial but something wasn’t sitting right with me. I wasn’t convinced I was having a miscarriage and so I took a third test. This one was positive.
I needed answers and, feeling unsupported by my then GP (I now have a different one), I called the Early Pregnancy Unit at my local hospital.
‘Come in and we’ll have a look at you,’ came the warm response of the midwife who answered the phone.
I went in with my husband and they took some blood tests and performed an internal ultrasound. This confirmed that I was pregnant but that there was a risk of a miscarriage. We were due to go away on holiday to northern Scotland the following week but I was terrified about leaving.
‘Just go and try your best to relax. There is nothing you can do to change what will happen. Your body will decide.’ The midwife’s honesty was comforting and, although I was still scared, I knew I was now in safe hands.
Our holiday, as predicted, was awful. I was in constant pain and needing to urinate every few minutes. I started to lose blood and I knew we were probably going to lose our baby. My husband offered constant reassurance. I didn’t want reassured though. I wanted to be excited like other couples get to be. I wanted to tell everyone we had amazing news. The last thing I wanted to do was to just sit and wait for nature to decide. More than anything I wanted to be home so that I could go and speak to the midwives again. I needed their reassurance. I needed to know that everything was going to be okay.
On our last day my husband and I visited the most beautiful beach. I grew up in the Channel Islands and so as soon as I step onto a beach I’m like a six year old, laughing and running about barefoot in the sand. I felt free and for the first time that week I wasn’t obsessing about hospitals or pregnancy. I was a wife on holiday with her husband, loving her life. It was a beautiful moment.
On our way home, however, I became doubled over in pain in the car. Stopping at a service station, I went to the toilet to discover heavy blood loss. There was blood everywhere. I burst into tears.
We drove to the nearest hospital and went straight to A&E, where I was seen immediately and told that I needed to be taken in an ambulance to a larger hospital. ‘It’s probably just a miscarriage, but we are concerned that it might be ectopic,’ the student nurse explained ‘we need to get you seen by a consultant.’
‘Ectopic.’ The word hung in the air as she left. Due to increasing abdominal pains, I’d been saying for the past week that I thought it was an ectopic pregnancy but had been reassured that this would have been picked up on the ultrasound.
‘I’m not convinced that it’s even a miscarriage, let alone an ectopic,’ explained the consultant after she’d examined me at the larger hospital. ‘It could just be an implantation bleed.’ I looked at her in disbelief. She had to be kidding. I must have lost about half a pint of blood.
‘Go home and relax and come back tomorrow.’
‘Relax?’ I thought to myself. How could I possibly relax?
The following day brought more questions. My pregnancy hormone had risen and not fallen, as would have been expected if I’d had a miscarriage. However, a scan was showing nothing in my womb.
‘We’ll do a blood test every forty-eight hours to monitor your pregnancy hormone levels,’ was the only solution they could muster. ‘Promise us that you’ll come in immediately if you experience any sudden abdominal pain.’
So, for over a week I went into hospital every two days for blood tests. My hormone levels continued to rise but not at a level that would be considered ‘normal’ for a viable pregnancy.
Then, a third scan answered the question that had now been left unanswered for three weeks. ‘The embryo is sitting in your left fallopian tube. I’m sorry, but you have an ectopic pregnancy.’ It was a mixture of distress and relief. At least I finally had an answer.
‘You’ll need to make a decision about how you want to terminate the pregnancy. You can either take a drug that contains chemotherapy or you can have surgery.’
‘I want surgery,’ I stated without thought.
‘The risks are quite serious. Are you sure?’
‘Yes.’ Instinct was kicking in and I knew it was what needed to be done. I’d known it was an ectopic pregnancy before they had and so I knew I had to listen to my body again.
‘Why don’t you sleep on it and come back first thing tomorrow. We’ll prep you for surgery but you can change your mind at any stage.’
The following morning I was terrified. I’d been told that I could haemorrhage during surgery or that they could even rupture my bladder or bowel. There were so many risks associated with surgery whereas the drug they had offered, which I’d been told would ‘destroy the foetus’, had minimal risks.
I made a desperate deal with the universe. ‘If I hear a Michael Jackson song before they ask me again then I’ll have surgery. If not then I won’t.’ It seems stupid when recalling this desperation now, but I’ve been making silent pleas like this my whole life.
When we arrived we were told to sit in the waiting room where, on previous visits, the TV had been blasting daytime TV programmes. However, we were in earlier than normal and the radio was on. Michael Jackson’s ‘Beat It’ was playing as we entered the room and my mind was made. I was having surgery. However, I still had reservations.
‘What if I don’t wake up?’ I asked my husband as he held me close in the moments before I was taken to theatre.
‘You will. Don’t be daft. I’ll see you soon,’ came his response. I was aware, however, that he held me just a little tighter than usual before leaving the room.
Following surgery I drifted in and out of consciousness in the recovery room. The registrar was standing beside me and kept touching my arm.
Once fully awake and in a hospital side-room the surgeon came to see me. ‘Well you’re certainly the talk of the hospital today,’ she laughed.
‘Why?’ I asked still groggy from the anaesthetic and not sure what she was on about.
‘Has no one told you?’ she asked confused. ‘Your heart stopped when they gave you the anaesthetic. They managed to give you an adrenalin shot and get you breathing again. Just as well really. You were so low risk for this happening that the adrenalin was locked in a cupboard. You didn’t half give us all a fright.’
‘Why did it happen?’ I managed to mutter.
Was I hearing her right? My heart had stopped? That couldn’t be true.
‘You had a ruptured ectopic pregnancy. Just as well you chose surgery. You had internal bleeding from your left fallopian tube. Goodness knows what would have happened if we’d just sent you home with medication.’ She laughed again. This time I realised it was nervous laughter. ‘The anaesthetist will be in later to chat to you about it all. In the meantime just rest.’
‘I medically died.’ I thought to myself as she left the room. But? What? I couldn’t even begin to comprehend what was happening.
Hours later the anaesthesia team were sitting in front of my husband and I explaining everything in detail. There were lots of apologies and reassurances but I wasn’t really listening. Dying is one thing but getting to live afterwards – now that deserved some reflection.
Regrettably I didn’t fully appreciate this gift and, as a result, I missed the opportunity to live with any new insight. The lessons I would later learn following my cancer diagnosis (and now hope to share with you, my reader) hadn’t taken effect and instead I wallowed in grief over our loss. Within a couple of weeks I’d immersed myself back into my work and was focusing all of my spare time on intensive exercise again.
Reflecting on this now I realise that I was looking for a distraction, a way out from the pain I was feeling. I was seeking an escape rather than acceptance. However, instead of doing what my body needed and letting myself grieve and giving myself the time and space to emotionally and physically heal, I began to punish myself with intensified self-loathing. I was in a very dark place.
To make matters worse, during this time I was experiencing constant abdominal pain, swelling and frequent urination and so I went to see my GP on a number of occasions over an eight-week period. She would always reassure me that my symptoms were due to irritation caused by the internal bleeding while delicately asking if I thought I needed emotional support to get me through this time.
‘No, I’m fine,’ always came my reply. It was a vain attempt at convincing myself that I was doing well; that I was coping.
Other symptoms started to plague me too. My right rib cage was causing me constant pain, my sternum ached and, on one particular day, I collapsed in our hallway for no apparent reason.
‘You’re just overdoing it with the exercises you’re doing. Perhaps you should take some time to rest.’
I wasn’t convinced.
My concerns increasingly grew when a lump started to form around one of the surgical scars in my abdomen.
‘It’s just scar tissue from your operation. Try not to worry,’ the GP assured me gently.
‘It’s growing though, scar tissue doesn’t grow.’ I insisted.
‘I don’t think it is growing. You’ve been through a lot this year. Are you sure you don’t want to speak to someone about how you are feeling?’
‘No.’ I left her office feeling alone. Why was no one taking my concerns seriously?
However, when I didn’t stop going to see my GP she finally agreed to help alleviate my concerns and referred me for an ultrasound of my abdomen.
Weeks later, in November 2015 the radiologist noted that I had large cysts on both of my ovaries, each measuring over five centimeters across. She also noted that one looked ‘suspicious’ and that perhaps a post-surgery infection was responsible for my symptoms.
In response to this I mentioned my family history of ovarian and breast cancer and asked if she thought I should be concerned. Just like with my ectopic pregnancy, instinct was again taking over. I knew something was wrong just like I had known I needed surgery. However, she said it was unlikely at my age but that she would refer me to see a consultant gynaecologist and arrange for my GP to take a CA125 blood test. This, she explained, was an ovarian cancer marker test. A high number may indicate the need for further tests. She didn’t need to explain this to me. I already knew. I’d been researching ovarian cancer for the past two months due to my increasing concern that this was the cause of my distress and symptoms.
I first saw my consultant gynaecologist in early December 2015. He confirmed that my CA125 blood test results were elevated but that he was not concerned because this can also indicate an infection. Instead he began asking about sexual partners and said he was going to test me for STIs.
‘I’ve been with my husband for seven years. There is no risk of an STI.’
‘You’d be surprised,’ he laughed, testing me anyway.
‘Are you sure it’s not ovarian cancer? I have all the symptoms and we have a family history of the disease.’
‘Definitely not. You have no risk of ovarian cancer. You’re too young. Did you receive psychiatric support after your ‘episode’ in the summer? I’m sure you are just overly concerned as a result.’
I wasn’t sure if he was referring to the ruptured ectopic, losing a child, my heart stopping during surgery or all of the above. Either way, I was offended and made a decision that I neither liked nor trusted this man who at that moment was now conducting a rather painful internal examination with his hands without explanation.
‘Come back in a few weeks. I’m sure your symptoms will have passed by then.’
I left feeling dissatisfied and annoyed. I went to see my GP as soon as possible, voicing my concerns.
‘Fiona, he’s written down everything you said to him in a letter he sent me. He mentions your concern about ovarian cancer and highlights that there is no risk,’ she reassured me. ‘I have to say I’m relieved. I thought to myself this poor girl has just had an ectopic pregnancy, surely she can’t be unlucky enough to have ovarian cancer too’ she smiled, reassuring me. ‘Why don’t you go to your next appointment with him and if you are still not happy then we will look at other options. Okay?’
‘Okay.’ I liked her. At least she listened.
Over the next few weeks my husband and I, with medical permission, celebrated our wedding anniversary in Vienna, however, my abdominal swelling had now reached a point where I was unable to eat and I was growing increasingly anxious about my health. Worse case scenarios consumed my thoughts and fear filled my mind.
When I returned to see the gynaecologist he tried to reassure me, letting me know that all of my tests had come back clear from infection and asked if my symptoms had passed. I explained that they had progressed and so he conducted an ultrasound. This was the first time he’d scanned me, having dismissed my requests at our previous appointment despite the fact that he hadn’t seen the scan the radiologist had done previously.
Following this he explained that he would repeat the CA125 test to eliminate ovarian cancer as a risk factor, reassuring me that he still thought I had a post-surgery infection.
However, at a follow-up appointment a week later he let me know that my CA125 test results had risen.
‘I’ve met with the surgeon who operated on you in the summer. She’s assured me that if you had ovarian cancer that it would have been picked up at the time of your operation. However, I think it’s best that we book you in for a laparoscopy in late January. Do come back if your symptoms get worse in the meantime.’ He handed me a note of his email address before showing me out. I couldn’t help but notice that his manner was different this time.
‘I thought you said I was too young for ovarian cancer?’ I asked.
‘There are rare cases,’ he explained. ‘I’m not worried but it might be best to eliminate it as a possible factor’. I couldn’t help but reflect that this was exactly what I’d been asking him to do for several weeks now.
Two weeks later, however, while at work and over 70 miles from the hospital in which my gynaecologist worked, my abdominal swelling and pain got to the stage that I was unable to do anything. Lying on a couch at the far end of the office, I used my phone to email him, stating that I thought something was seriously wrong.
Moments later my phone rang. ‘Come in straight away,’ came his voice on the other end of the line.
I drove myself the 70 miles from my place of work to my local hospital and by the time I arrived it was after hours but he had waited. He conducted another ultrasound. This time it clearly showed a build-up of fluid around my abdominal organs. His reassurances stopped and I was worried.
‘We need to do an abdominal drain straight away so you’ll need to stay in overnight. Can someone bring in some things for you?’
‘My husband.’ Was all I managed to answer despite the hundreds of questions running through my head.
That night five litres of fluid, weighing 5kg, were drained from my abdominal cavity. Having spent the previous few months concerned that I was gaining weight despite my intense exercise routine, this revealed that, in reality, I had been losing weight at a rapid rate. By the time the drain was complete my ribs and hips were clearly visible. I was skin and bone.
There was no more talk about STIs or imagined symptoms. Something had changed. However, I was still assured that this was a sign of a serious post-surgery infection and not cancer.
The next day I was discharged with several boxes of oral antibiotics to take over the weekend and asked to come back into hospital the following week for an MRI while they waited for the lab to do tests on the fluid they had drained.
The MRI took place four days later, following which I was told that the fluid had tested clear from infection and that the lab were conducting further tests. I was not surprised it had shown no signs of infection. My blood results the previous week had been clear from infection too and I was now increasingly concerned that I had ovarian cancer. I again voiced my fears to my gynaecologist.
‘We need to run some further tests on the fluid. Your MRI is showing a mass in your abdomen but, at this stage, we are not sure of the cause. I’ll phone you as soon as I have more information about your results. In the meantime, you can go home and rest.’
It’s odd, but I knew. I knew I had cancer. I’d always known. There was a difference now though. Now his eyes told me that he knew too.
Less than 30 minutes later, while sitting in my car in a supermarket car park, I received the call that would change my life.
‘Can you come into the hospital this afternoon?’
‘We have your lab results. I think it would be best if you could bring someone with you.’ He said, without answering my question.
He didn’t need to say any more. I’d been speaking to this consultant nearly every day for two weeks and he always told me everything over the phone. Although he didn’t confirm anything during the call I knew in that moment that the further tests had confirmed my worst fears. I knew they’d found ovarian cancer cells. I knew my life was changing forever.
I cried all the way home.
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