It has been a while since I felt like I wanted to put pen to paper and write a blog post. Since my last post I’ve tried several times but always found myself stopping. But now I feel ready; I’m not sure whether it’s all the thinking time, courtesy of lockdown and shielding, or whether it’s just taken this much time to process all the things which have happened over the past year and half. So here goes:
Way back in October 2018, Alex made me the happiest girl on this planet when he asked me to be his wife. I remember the moment clearly. In an instant, the pieces of my life puzzle seem to move and fit together, and that final missing piece slotted into place. And after that I seemed to be able to see and experience so many good things, including being nominated for a Pride of Britain of award! I remember towards the end of 2018 feeling a sense of calm and happiness at how things were going. For any other Gilmore Girl fans, the best way I can describe that feeling is how you imagine Lorelai is feeling when she is surrounded by the one thousand yellow daisies. Life was going well and I felt surrounded by daisies. I didn’t think anything would get in the way of that.
Alex and I spent the start of 2019 learning what it involves to plan a wedding and all the joy (and stress!) which comes with this. Then April 2019 my routine scan picked up a possible sign of cancer recurrence, after me having just hit the milestone of two and a half years cancer free. Hearing my oncologist say that there was something they were concerned with on my scan felt like an immediate crashing down of everything I’d been doing and experiencing since remission. I remember feeling just so angry about how unfair life was. I had been letting myself believe that I had found my happy ending, and now here I was about to have to try to dodge yet another curveball. It also caused a lot of feelings about my body to resurface; I once again started to look at my body with distrust, anger and sadness. It had let me down again.
One of the biggest things which I started to struggle with after hearing the news, was how this would be putting the brakes on my hope and plan to move forward with preventative mastectomy surgery. From the day I was diagnosed back in 2016, I’ve wanted to have the surgery as soon as it was possible to. I had already said goodbye to breasts once I knew the risk they came with; for me they were no longer a part of me but just things on my body which didn’t carry meaning anymore. I wanted to be able to take control of my increased breast cancer risk, rather than allowing BRCA and cancer to take that choice away from me yet again. I had made my peace with having to wait for surgery until it was considered safe enough after my diagnosis and treatment. But now, coming to the realisation that I’d have to wait even longer, really hurt. It was like a giant punch to the stomach when I was already down on the floor.
What came next was a horrible 6 weeks of ‘watch and wait’. The scan had indeed picked something up but it wasn’t yet clear enough what that was. Possibly areas of scar tissue from my previous surgery, possibly something benign and unimportant or possibly something not good. So the decision was made to watch it and see what happened. It was exactly how you can imagine a six-week wait would be. Horrendous. My family and friends tried as much as possible to keep me busy and distracted with whatever they could think of. Possibly the best one was when Alex and my siblings planned a family trip to a piercing shop so that they could all get piercings while I watched them yelp. It helped. But as with most forms of distraction it does just that; distracts for a bit but doesn’t stop the fear, because it can’t.
During that time, I had to relearn a lot of what I had learnt the first-time round with how to deal with the really bad days, and that it was okay to feels these horrible emotions. I also had to remember that, although I was angry at it, my body had looked out for me again, because, although small, these were early signs. After the wait, the decision was made to biopsy what was showing up. So a few weeks later I was back in a hospital gown for a small surgery with the aim of taking out whatever it was…or as I chose to refer to it, Boyd the tumour. After a few hours Boyd, who was sitting behind my bowel, was removed. The results then came a few days later and Boyd was indeed confirmed as a 1cm tumour, containing some recurrence inside him. Thankfully, all evidence of disease was removed with him. After discussions with my team we all agreed that the best next step was preventative chemotherapy before starting on a PARP inhibitor; a daily tablet treatment which is showing to be an effective maintenance treatment for women with BRCA gene mutation related ovarian cancer.
In June 2019 I got myself ready to get back in the chair for six more cycles. I struggled with the fact that chemotherapy had to begin around the time of the lead up to my wedding and that I would be between cycles on my wedding day. I couldn’t help but think that felt so incredibly unfair. The drugs I had this time round came with side effects but the hope was that they would not be as intense as last time. I focused on putting myself back into survival mode decided that chemo was not going to stop me. I worked all the way through treatment, had my hen party, and even went to Paris for the weekend. My team worked through my treatment dates with me to make sure that all the things I wanted to be able to do could still happen around it which I was so grateful for. It means that, although not always ideal, the lead up to the wedding and the day itself was the leading star of the show, and chemo was the small sidekick. Certainly it meant needing to make some amendments to the typical ‘pre-wedding excitement’, like having to wait until four days before the day to have my wedding dress altered to allow for treatment weight gain or loss, and rather than ordering champagne to the hotel room the night before my wedding, my siblings ordered salt water to try to deal with my ulcerated mouth; not quite as tasty, but certainly more helpful!
All of this led to a day that was all I could have hoped to it to be, and more. Monday 26th August 2019 will always be etched in my mind as my wedding day and cancer didn’t even get a look in. Any side effects were masked by all the love and happiness in the room and I found myself looking at the situation in a very different way instead of focusing on how unfair it all felt. Instead it was the day Alex and I show the world that there is life during and after cancer. We have a powerful story to tell. It’s a story of hope, courage and faith and we will never stop sharing it. We want our cancer diagnoses and how we overcame them to be a source of support and guidance for others having to swim through these choppy waters.
After the wedding I got ready to start this academic year and I remember saying to Alex, “this is my year for work”. I’d had so many interruptions to my career since my fist diagnosis due to health or treatment so I was determined that this year I would get through a whole school year without any…and then came Covid-19!
Navigating my way through the pandemic with shielding has, at times, been incredibly difficult. Before all of this I was learning to handle my health anxiety and a big part of this for me is my daily routine and being able to get out and about. So being stuck inside the house for 12 weeks was incredibly difficult mentally and physically. It’s made dealing with worries and anxiety about my health worsen; at the moment I can find myself quickly getting panicked over small things like a bruise on my leg or a white mark on my toe. I jump straight to it being a sign of Cyril and it’s one of the worst feelings I can have. Back to the Gilmore Girls here, because Lorelai once said something which sums up this feeling perfectly; my health anxiety makes my brain “a wild jungle of scary gibberish… Bicycle. Unicycle. Unitard. Hockey puck. Rattlesnake. Monkey, monkey, underpants….”
One particular aspect of shielding I found really hard was not being able to attend any hospital appointments. It may sound strange but I get a lot comfort from these appointments, despite the regular anxiety which comes with blood tests and scans. But I am so thankful to my team and all the others who have dealt with this horrible situation and kept supporting and treating patients through this all. From arranging all the phone consultations to those volunteering to help deliver my medications.
Last month I went to my hospital appointments face-to-face as I needed to have my scans. It felt very surreal with all the measures now in place, and having to do it all alone without Alex there was hard, but the nurses were amazing and so supportive. Thankfully all results were good which was a huge relief. I’m lucky and fortunate because however bad it has been for me, I know that there are many other cancer patients who have had it so very much harder with Covid, especially those preparing to start or those in the middle of treatment. Hospitals like the Royal Marsden still need our help more than ever before to allow them to continue to give patients everything they need to fight this viscous disease. You can read more about this on their website https://www.royalmarsden.org/emergency-appeal, where you can also still donate to the Royal Marsden Covid appeal.
Don’t get me wrong, I still get my bad days. There are days when I end up truly believing that I was programmed wrong as a human because of my genetic mutation, when I get so angry that this happened to me twice, and days when I don’t trust or even like my body. But then when I stop and think further, I remember that my body has worked to try to keep me safe, twice, and that anger is actually ok at times. And that I’m proud of my body and what it allows me to get on with, which has felt even more important over the past month with being able to be out the house more.
So that’s my year (and a half) summed up here, with the great, the good, the bad and the horrible. Who knows what is to come next, but if this year is anything to go by, then guessing or planning certainly won’t work. Which means I’m (obviously) going back to Gilmore Girls for my answer. So in the words of the Life and Death Brigade;
“In omnia paratus”…ready for anything.