An Open Letter – to fabulous women everywhere & men with fabulous women in their lives.
‘Health is wealth.’ I’ve heard this saying in and around my life many times through various people and I always thought it to be a very strong yet, perfectly simple, phrase. However, it wasn’t until earlier this year did I understand what it truly meant. After all, I already felt pretty wealthy, to be honest! My husband Mark and I have had an extremely eventful handful of years, which has included a house, an engagement, a dog, a wedding, a business and a baby (I mean, how many of life’s stereotypical boxes can one couple hope to tick in such a short space of time?!), and so we decided at the end of last year that 2019 should be ‘a quiet one’. You can probably already sense where this is going…
On Monday 10th December 2018, I went to see the nurse at my GP’s office to have my routine cervical screening (or the more commonly known, but less appealingly named, smear) test. [Cervical screening is a test to help prevent cancer. It checks the health of your cervix and any changes in its cells. A soft brush is used to collect the cells via a speculum. These tests are performed every three years and are available to women in the UK from the age twenty five.] In approximately five minutes of slight discomfort and basic Christmas chit-chat, I was on my way back home. Nine days later, I received a phone call from that very same nurse. She talked at me for a couple of minutes and I heard her say various words including ‘results’, ‘cells’, ‘cancerous’ and ‘colposcopy’ and then she asked if I had any questions. If I’m being honest, that phone call is a total blur to me. All I remember asking is ‘What happens during a colposcopy?’ and I couldn’t even fully remember her answer as I had to look it up after our conversation. I spoke with my Mum and a couple of friends who I knew had all had colposcopies in the past due to ‘abnormal cells’ found on their screening tests and they helpfully explained the process to me, told me that it was a very common procedure and that I would be totally fine. [A colposcopy is very similar to a cervical screening test, but slightly more invasive where a microscope is used to see inside the cervix and a special dye is applied to highlight any areas of abnormal cells. Often these abnormal cells are nothing special at all and can be left alone, and sometimes, if they are found to be potentially pre-cancerous, they can be removed through various simple treatments including cryotherapy or by laser.] My appointment was booked in for Monday 31st December. Not ideal when you’re looking forward to the start of a new year but, nothing a rook of cheese and mulled wine couldn’t help to fog until then! It was also the same day as the wedding of one of my oldest friends, where I was due to sing their first dance but, we’ll arrive at that story very soon.
So on New Years Eve, Mark & I went to the gynaecology department at Royal Preston Hospital in Lancashire and sat there feeling fairly nervous but quietly confident that things were going to be ‘totally fine’. We were taken by a nurse into a consultant’s office (we’ll call him Dr P), where the first thing he asked us was, ‘Do you have children?’ to which we replied, ‘Yes, we have one.’ He then asked us, just as nonchalantly, ‘And do you want more?’ We answered ‘Yes, of course’ but before we could ask why, he started to draw a diagram of my Fambo on a piece of paper (sidenote: Fambo is my word for vagina. I do apologise!). Referring to the diagram, Dr P explained that the cells that had been picked up on my screening test were glandular and the glands resided quite high up in the cervix. He wanted to have a good look during the colposcopy but also perform a surgery called a cone biopsy with a loop excision that same day as a matter of urgency. [A loop excision or LLETZ (large loop excision of the transformation zone) is the most common treatment to remove abnormal cells. It is usually performed when the patient is awake with local anaesthetic injected into the cervix and a thin wire loop with an electric charge is used to remove the cells. A cone biopsy is performed less often than a LLETZ and is a minor surgery performed under general anaesthetic where a cone shaped piece of tissue containing the abnormal cells is removed from the cervix.] In a state of panic with a quivery bottom lip, I explained that we were going to a wedding that afternoon, I was singing the first dance, I really needed to be there, she’s one of my oldest friends etc. All of which he probably couldn’t hear as he was already filling out my paperwork, putting my situation as the priority. However, he did honour our wishes to go to the wedding and booked me in for my surgery on Friday 4th January. My colposcopy was over before I knew it, despite my thoughts reeling and feeling pretty uncomfortable but, I had Mark holding my hand and two lovely nurses chatting my ear off to keep my mind off everything. Followed by a pre-op and blood test, we sped home with a one hour turnaround to get ready for a black tie New Year’s Eve wedding! No easy feat, I’m sure you ladies would agree! However, we made it and had the most fabulous time, bringing 2019 in with lots of fireworks and bittersweet emotions; uncertain and anxious about what lay ahead for us but determined and ready to step into it together. My cone biopsy went well but, my loop excision turned into a knife excision due to Dr P ‘seeing more that he wanted to have a look at’. This meant it was slightly more invasive due to a knife being used and I bled a little more than I would after a loop. But, other than the bleeding, some period-like cramps and the standard post-GA (general anaesthetic) fuzziness, I felt pretty good and I was discharged home on the same day.
The following Friday, we received a phone call asking if we were free to see Dr P for a meeting first thing Monday morning. I asked if this was about my biopsy results. It was, and that was all they could tell us. To say the weekend that followed was incredibly difficult would be a huge understatement. Anyone who has been in a similar situation will tell you that it’s the waiting and ‘the Unknown’ that takes it’s toll on your emotions the most and I know for a fact that Mark & I have tried to erase that weekend from our memories. But one thing I do remember is how CONFIDENT I felt that it wouldn’t be cancer. I just had the facts and statistics rolling round my mind the whole time; ‘cervical cancer is a slow grower…that’s why the tests are three years apart…I’ve already had a previously clear smear…I’ve had a healthy pregnancy with ultrasounds and an emergency c-section, nothing was picked up then…’ and so on. Monday morning came, we were taken in to see Dr P, and then the scene you never imagine yourself to have to live through, happened. ‘Liz, your results have come back and, I’m afraid you have Cervical Cancer.’ The first thing that ran through my mind was, ‘Will Mark and Olive be OK without me?’ because I genuinely thought, this is it. This is how I’m going to go. Maybe not today, but soon. My world came to a stand still, my tongue went numb, my brain felt like it had cotton wool stuffed into it so, when Dr P asked if we had any questions, I honestly didn’t know what to say. I was so confused. This is ridiculous. I’m only twenty nine, for goodness sake! I’m healthy, I don’t smoke, I’ve never even been on the pill. All the ‘high risk’ factors of cervical cancer, I didn’t have. After a few minutes, I managed to hold back the tears and was eventually able to ask, ‘But I’ve already had a perfectly clear smear test when I was twenty five. (sidenote: I didn’t have my second smear three years later due to being pregnant at twenty eight and you can’t be tested whilst pregnant. So, I went to be tested once I’d had my daughter.) I thought cervical cancer was a slow grower that took ten to fifteen years to develop?’ To which Dr P responded, ‘It can do.’ It turns out that I had what is called adenosquamous carcinoma, a rare form of the cancer which is formed from both the more common squamous (flat skin) cells and the less common glandular cells. This type of cervical cancer can’t always be picked up on a cervical screening test due to the location of the growth, which I couldn’t believe and was outraged by but, for whatever reason, mine HAD been picked up and found so, I had to feel grateful for that. They didn’t know what Stage I was yet so, I was required to have an MRI scan, which wouldn’t be for another four weeks due to my cervix needing more time to heal after my cone biopsy and knife excision. Four weeks of more excruciating waiting. I was due to go back to work from maternity leave the very next day and decided that it would be the best thing to do as it would help keep my mind busy and focused on something other than this bastard tumour. We drove home in silence, holding each other’s hand and as soon as we arrived home, I gave our daughter Olive the tightest squeeze I could muster, breathing in every bit of her. She had just turned eight months old. In the raw emotion of that day, Monday 14th January, and after thinking about my gorgeous little family, I remember saying to Mark, ‘I’m going to beat this. I’m going to fight this so hard. But, for now, we’re just going to have to live. Because there’s nothing else we can do.’ So, for the next four weeks we worked, we took Olive to the Sea Life Centre, we went to the Lake District, we saw friends, we ate, we drank, we lived. Counting down the days until my MRI. The scan itself was not a terrible experience, as a couple of people had told me it would be. If anything, I was really bored! I was in there for almost forty minutes and, yes it is loud and can feel slightly claustrophobic but, I just shut my eyes and thought about lots of different things to take my mind off where I was at that moment. I repeated affirmations to myself over and over and thought about what delicious food we were going to buy from the Booths across the road from the hospital for our tea! We then waited (more waiting!) to receive a phone call about my results on Thursday 14th February. Valentine’s Day. After which we would have a meeting with Dr P regarding my treatment plan on Thursday 21st February. Mark’s birthday. I mean, talk about crap timing!
Valentine’s Day came and, after an agonising wait ALL DAY, I finally spoke to my wonderful oncology nurse, Sandra, that evening. Throughout this whole process, and especially after four weeks of thoughts and discussions, my one fear was being told that I would have to have a hysterectomy. [A hysterectomy is the surgical removal of the uterus (womb).] In the back of my mind, I knew that the likelihood of this happening was very high, due to the aggressive nature of my tumour but, we had always dreamed of having more children, we had only just started our family and the thought of that potentially coming to an end filled me with dread. To the point where, I cared more about that outcome than the fact that I had cancer. I was in a very different head space to those closest to me, who obviously only had my best interests at heart at that moment and were not thinking about the future, like I was. I believe that, because I felt so physically great, with no symptoms and no illness, I found it very hard to understand the severity of what was going on inside me and that a huge decision was going to be made that was out of our control. I just wanted Olive to have a brother or sister. Sandra couldn’t have been more amazing and sympathetic as she explained what the MRI had shown. I was Stage 1b2 with the tumour still residing within the cervix. Good news so far. Pretty early. No apparent spreading. Great. However, alongside the results from my cone biopsy, the tumour showed not only to be a rare type that will spread quickly but that it also had what is called Lymph Vascular Space Invasion (LVSI) or ‘Space Invaders’ as Mark calls them (a shout out to the 90s!). [The presence of LVSI in the tumour means that, even if the tumour has shown no sign of further spreading and is perfectly removed from where it is located, any scrap of cell that is potentially left behind is highly likely to develop into another tumour of the same form and continue to ‘invade’ into the lymphatic and vascular (blood) systems.] Due to the presence of LVSI in my tumour, Dr P and various other treatment specialists decided that the best course of action for me and my cancer would be a radical hysterectomy, preserving my ovaries so as not to bring on early menopause due to my young age. [A radical hysterectomy is the surgical removal of the uterus and its surrounding structures, including the cervix, ovaries, Fallopian tubes, tissues and lymph nodes.] I wrote down notes as Sandra spoke to me on the phone and as Mark came over to read them over my shoulder, I underlined the treatment plan so he could see what was being discussed and he just kissed me on the head and gave me a squeeze. We always knew deep down that this was going to be the course of action. The following week on Mark’s birthday, we saw Dr P and Sandra at the hospital to discuss the details and when it was going to happen. He explained that, had my tumour not had LVSI present, he would have just performed what is called a trachelectomy. [A trachelectomy is the surgical removal of the cervix. As the uterus remains intact, this means that the woman’s fertility is preserved and, therefore, is often performed on younger women with early cervical cancer.] However, my MDT (multidisciplinary team) decided that, the risk of recurrence was far too high and a radical hysterectomy was the best way forward. Once the surgery was performed, everything they removed would be checked for any abnormalities, which would show whether I needed any further treatment, such as radiotherapy or chemotherapy. Mark and I understood what was being said and knew in our heart of hearts that there was no way around it, despite being offered a second opinion. We just wanted to move on with our lives. Dr P read out the risks of the surgery, I signed the consent form and I was booked in for the following week. Before we left, I asked Dr P about my cancer and, more specifically, how long he thought it had taken to grow (my MRI showed it was almost six cm in length) and how long he thought I had had it. He replied, ‘I think only a matter of months. It’s extremely aggressive. If you had gone for your smear even six months later than you did, you’d be in a very different position right now.’ This shocked Mark and I completely and it really made me think about cervical screening tests here in the UK and how incredibly important they are.
Friday 1st March came and along with Mark, my hospital bag and as much strength as I could muster, we arrived at Royal Preston for my surgery. I was first on the roster so, after being changed into my gown, a brief meeting with the anaesthetist and a doctor who would be present during my surgery, I was wheeled away into the anaesthetic room. One positive thing I can take from this whole experience is the incredible people I have met along the way. The hospital staff. Their unique way of talking to you, keeping you at ease and making sure you’re as comfortable as possible during the most horrifying points of your life is truly remarkable. And plus, I’m always game for a chat, no matter what is going on so, they honestly helped me more than they’ll ever know. As it turned out, conversation was my best medicine. The surgery took just over three hours in total and before I knew it, I was coming round from my anaesthetic and feeling that familiar fuzziness again. I was placed on the gynaecology ward, where I was surrounded by women at least forty years older than me. The patients were actually shocked to have ‘a young lady’ join them on the ward. The surgery had gone well and, thanks to the morphine, I was feeling pretty darn good, despite the standard post-GA vomiting and the inability to sleep thanks to a few phantom snorers on the ward!
The story that follows really has no place in this piece. Those closest to me know the full story and, despite everything we had already been through, it ended up being the hardest and most difficult part of the whole journey. And, the most ridiculous part is that it has nothing to do with my cancer! Despite my radical hysterectomy going well, I unfortunately suffered from major complications, which resulted in two separate internal bleeds. One two days later and then another six days after that. I remained in hospital until Monday 18th March having had three major surgeries in eight days, a prolonged stay on the high dependency unit and many other difficulties in between. But like I said, nothing to do with my cancer! Just bloody bad luck (as if we hadn’t already had enough!). This obviously has set my recovery back considerably and my body has been through a hell of a lot these past twelve months (thank you pregnancy, child birth, cancer and surgeries!) however, the human bodies are INSANE. I am in awe of what they can do, both good and bad, and we must love them, look after them and above all, LISTEN to them.
Which brings me now to present day. I’m almost three months post third surgery as I write this. It feels like a lifetime has passed but, not that long ago, I couldn’t walk, hold my daughter or lie flat. But, three months down the line, I can do all these things and more, growing stronger day by day. I still have a lot of swelling, tender scar tissue, a stubborn haematoma and extremely weak core muscles but, with time and patience (which, being an active mother, I have very little of!), I will be physically back to my old self before I know it. I gather my strength from those around me and, without the constant love and support of Mark, my family, friends and the staff who cared for me in hospital, I honestly wouldn’t be where I am right now. What Mark and my parents witnessed in hospital I can’t even bear to think about, even though I was living through it myself. To see a loved one in so much pain must be incredibly heartbreaking and, I think about all those people who are experiencing the same right now with their loved ones and hope they have the support they need. I’m now sporting some pretty impressive scars too! I have a large horizontal one above my bikini line which is where Olive arrived, my radical hysterectomy was performed and was reopened twice again for my two emergency surgeries and a long vertical one which finishes just above my belly button which was cut during my last surgery. I even have some cute dimple-like ones from my five drains sites! I will wear these with pride forevermore because, to quote the character Maui from our favourite film in our house, ‘Moana’, ‘…the tapestry here on my skin is a map of the victories I win.’ And win it, I did.
Towards the end of my stay in hospital, Mark and I were told that the tissues and lymph nodes that had been removed during my radical hysterectomy had been checked over and no abnormalities were found. I was cancer free and required no further treatment. The emotion we felt is hard to describe. Obviously, we felt relieved and incredibly grateful. But then, due to the extremely quick timeline of events, we had barely processed the fact that I had cancer in the first place, never mind that I didn’t have it any more! So, it was a strange sensation, to be honest. My cancer story has been a short one. There was no long, arduous and difficult physical battle that many have to go through due to intense treatments, sometimes for many years. But, despite the brief appearance of my cancer, it has come at a huge cost. We may not have had the physical battle, but we will have the emotional battle to come. We are often told how lucky we are ‘to have one’, meaning Olive. And we most certainly are. She has been our beacon of light and our shining star through all of this and a constant motivational force of strength for me in my darkest moments. However, when people say this when I’m feeling particularly low, it often makes me feel guilty, like I forget that we have her and that I’m craving a child that doesn’t even exist. This is not the case at all. I’m grieving a future I thought we would have. I hate that this choice has been made beyond our control and that we’re now walking along a different path. And we do have dark days and no doubt we will have some more. But, we’re slowly growing to accept our path and couldn’t be prouder of the fact that we have Olive to journey along with us. I have one remaining functioning ovary, as one had to be removed during my second internal bleed. The option to freeze my eggs is there. To try surrogacy or even adoption. We’re very fortunate to have these options but right now, we’re still too raw to consider them and we just want to concentrate on what we have right now, and that in itself is already pretty damn amazing.
Now, to the crux of where my story has led us to. My eyes have been opened to many facts and statistics recently that, quite frankly, frighten and sadden me. I’d like to share some of these with you, as you may not be fully aware of them yourself:
- The number of women attending cervical screening in the UK is falling, with over one in four women not attending when invited.
- Attendance is currently at its lowest in 19 years in England and at a 10 year low in Scotland and Wales.
- In 2017–18, 1.28 million women did not take up their invitation for their cervical screening test.
- Cervical cancer usually affects women over the age of twenty but the highest rates occur in women aged between thirty and thirty four.
- 99.8% of cervical cancer cases are preventable in the UK.
- Each year in the UK, over 2800 women are diagnosed with cervical cancer.
- Common symptoms of cervical cancer can include: Vaginal bleeding between periods and/or after sex, pain in the pelvic area, discomfort during sex.
- Very early-stage cervical cancer may have no symptoms whatsoever. This is why the importance of your regular cervical screening test is crucial.
For many women, avoiding your cervical screening test could be for a number of reasons. The most common ones I have discovered are embarrassment, fear of the test itself and fear of the outcome. If I could, I honestly wish that I could go with every woman who feels embarrassed or worried about their screening test and I would sit with them, talk to them, hold their hand, tell a dirty joke or whatever it took to take their mind off it. Because, it really isn’t that bad. It’s not the most wonderful experience in the world, either, but our nurses are trained to do this, they’re there to help you, not judge you and they’re bloody wonderful so will do everything in their power to make sure you’re as comfortable and relaxed as possible. I’ve even discovered that, some women will endure getting their Fambo waxed but won’t go to their smear test. I honestly don’t know how that one adds up! And to those women who fear the outcome, I honestly wish I could tell every one of you that ‘you’ll be totally fine’, like I was told, but I won’t. What I will tell you is that, ‘you’re doing the right thing and, whatever happens, it will get sorted.’ Because, not going puts your life at far greater risk in the long run and no amount of fear for a five minute smear test is worth that. As I said at the very beginning, ‘Health is Wealth’. If you have your health, then treasure it, look after it. By going to your cervical screening test, you are looking after yourself. Here in the UK, we have our glorious NHS which gives women the facility to have their cervical screening test at their local GP or hospital at their convenience. Please choose to have it and don’t ignore your invitation. Because YOU could save your own life. I did.
My body may now be more empty, but my heart couldn’t be more full. I owe my deepest thanks and gratitude to the consultants and doctors who have been by my side from the beginning, fixing what was broken and offering sound advice and encouragement to myself and my family. I owe my sanity and smiles to my caregivers. The nurses and health care assistants on the gynaecology ward and high dependency unit at Royal Preston who, amongst many other things, held my hand, gave me comfort and made me laugh in my darkest moments. You are all absolute heroes. I owe my heart to my family and friends. The love and support you have offered myself and Mark during this year is insurmountable. We are forever in your debt and can’t believe how fortunate we are to have you in our lives. I owe my strength to my husband, my daughter and my parents, who I wouldn’t be here without. End of. And finally, I owe everything, my life, to myself. For doing the right thing and going to my regular, routine cervical screening test at my GP’s office which took literally five minutes. I saved my life and you could save yours.