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Claire-Marie was diagnosed with stage 1b1 cervical cancer in 2018. She shares her experience of treatment and the importance of talking.
After my first smear being clear/normal, I was invited back 3 years later for another. I didn’t attend this one until it was about 6 months after the initial invite, when I received another reminder and had a verbal reminder from my GP. This then prompted me to book and go. I don’t think I ever really fully appreciated why we’re offered them. Whether this was due to not completely understanding exactly what the test was for (whilst just knowing that I should go) or subconsciously thinking “it will never happen to me”. Either way, it was something I didn’t tend to give too much thought or priority to.
In October 2018, I received the results of my smear test which indicated it was abnormal. Waiting a little anxiously about what this meant, I then attended a colposcopy appointment in November which showed I had CIN3. Due to the position of the cell changes on my cervix, I was booked in to have a LLETZ treatment under general anaesthetic and in the meantime, the consultant took a biopsy. The wait for this felt really difficult as anxiety crept in some more, especially about the biopsy results. This mainly stemmed from knowing that within this timeframe I had experienced some light bleeding after sex too (a potential symptom of cancer).
Just before the LLETZ surgery in December 2018, I was told that unfortunately the results of the biopsy did show that I had cancer. My consultant was amazing and explained that the cancer was microscopic and therefore looked to be in the early stages which was ‘good news’ as the LLETZ might be enough to get rid of it. Although I was absolutely devastated and completely floored to hear the dreaded word “cancer”, after a little bit of time remembering the key points my consultant had made, I also felt a tiny bit of reassurance with the potential that it may all be over really soon.
Following my LLETZ, I was booked in for an MRI, which I had just before Christmas 2018 and I waited over the holidays to get the results. As always, the wait was absolutely the worst part. My mind was going into a bit of an overdrive with the possibility that the cancer could have still spread and I felt a fear that I’ve never experienced before.
Luckily, the results showed it hadn’t spread anywhere - the relief was indescribable. I did need to have more surgery however, as there weren’t clear enough margins from the LLETZ. I shifted my focus onto this next stage and kept reminding myself that I just had to take it one step at a time, as hard as that was, but somehow it seemed to get me through.
My consultant told me that the next treatment was to cure the cancer and for this I was offered a hysterectomy or a trachelectomy. I opted for the trachelectomy. Everything seemed to move so fast from this point onwards, I didn’t really have any time to digest what was actually happening and felt weirdly passive but also safe in the hands of my consultant and nurses.
Again, anxiety kept coming in waves with a continued potential that there could be spread to my lymph nodes and/or I would still need further treatment if the margins weren’t clear from the trachelectomy. Fortunately for me, my surgery was successful. The relief of this brought me to tears (not for the first time in this process, I’ll admit!) and it felt almost euphoric.
After a few months, I physically started to feel better and mentally, I had a couple of tough moments but was mainly still on a high with a shifted perspective of life and what mattered the most to me.
I do have some mild lymphoedema in my pelvic area from surgery but this is something that I’m adjusting to alongside my scars. Something I found helpful and try to remember about these things (after feeling a bit upset them) is that they are part of my story and for me, they now represent all that I have overcome. I’m learning to embrace them and feel proud.
A year on from being given the all-clear, I think I’ve just about got my head around what happened. Without sounding too cliché, it has certainly been a journey. I continue to learn to try and accept that ‘healing’, especially emotionally, will take time and that at times it still takes me by surprise that I can become emotional about it all. But of course this is completely okay, even if I don’t always think it is.
As a mental health professional I know how important talking is and I’m doing my best to practice what I preach. During Cervical Cancer Prevention Week 2020, I decided to share my story on Facebook and tried to use it as an opportunity to encourage others to be supportive to one another.
I’m sharing my story not with the intention of scaring people, but with the intention of highlighting the importance of smears, as it saved me from a lot more treatment and potentially even saved my life.
Although I’m really passionate about raising awareness about the importance of them, I do think we need to rethink the way we talk about them. I truly believe we should talk about this topic more openly and in a non-shaming, informative way so more people can gain an understanding about what they are and the fact that it’s not always easy for people to attend them. I believe we need to encourage supportive language and space for people to acknowledge and talk about the different reasons that they might find attending difficult. In my line of work, it is so important to share knowledge to others and recognise when someone is struggling with something and support them in a way that isn’t shaming. The same should apply for smears - how we talk about them and how we encourage people to go.
If you are feeling scared or have other reasons why you haven’t gone for your smear test, try to notice the thoughts and feelings you’re having about it. Don’t push them away or ignore them, as much as you may want to - we’re only human - please be kind to yourself by acknowledging this.
Ask for support if you need it, whether from a friend, family member or professional. Maybe even really trying to think what you would say if it were a friend who was struggling and take that advice.
Ultimately, my message is... be kind to yourself and others in this process, be brave, and go for your smear, ensuring that you reward yourself afterwards with something you know will put a smile on your face. You absolutely deserve it. We’ve got this, ladies!