28 March 2021

For Ovarian Cancer Awareness Month 2021, Ovacome member Katie wanted to raise awareness of the impact of an ovarian cancer diagnosis for all those whose lives are touched by the disease. As well as sharing her own story, Katie wanted to share the stories and perspectives of those who have supported her throughout her diagnosis and treatment - in their own words. In this post, Katie's husband Bryan shares his experiences.

As I begin to reflect on the journey that Katie and I have made over the past 12 months, I experience a range of thoughts and emotions; from acute sadness and fear to the moments of warmth, the love and support of family and friends, the things we’ve learnt about ourselves and each other, and even the unexpected opportunities that have presented themselves.

In writing this story, I want to share my experience as a husband, supporting his wife through a cancer diagnosis. I hope these words might provide some support and solace to others on a similar journey.

Our story begins in Spring 2020, the middle of the first lockdown in Jersey.

What started as initial excitement when Katie displayed all the signs of early pregnancy quickly turned sour when a scan revealed something more sinister: ovarian cysts. Fast forward 3 weeks and we’ve relocated back to London for Katie to undergo IVF in the limited time left before surgery to remove her ovaries. In normal circumstances we would have carefully considered the risks and implications of fertility treatment but unfortunately time wasn’t a luxury afforded to us. Thankfully, against all professional expectation, it was successful, resulting in 2 healthy embryos! This gave us real hope that things might be ok despite the risks of the major procedure looming.

As the operation date approached, we were warned about worst case scenarios, including Katie not being able to carry our baby, long term bowel complications and many other very real risks. Our worries were further compounded by the fact that even if the procedure was a success, there was a high chance that the cysts would be cancerous. Attempting to get our heads around this was tough. Where do you even start? It was difficult not to focus on worst case scenarios, as much as we tried to remain positive. Personally, I felt a huge responsibility to put on a brave face for my wife but inside I was desperately worried.

On the morning of surgery I dropped Katie off at the Royal Marsden and we got ready to say our farewells on the steps to the main entrance.

Seeing her walk alone into the hospital, knowing what was to come broke my heart. I felt completely helpless. The rest of the day I spent trying to occupy and compose myself. Our fantastic surgeon, Mr John Butler had agreed to call me straight after the op so I was ticking off the seconds, minutes and hours until then. I remember bumping into a neighbour who asked after Katie and I found myself struggling to string a coherent sentence together; I was in a daze. As the afternoon passed by and I hadn’t received any updates, my nerves became more and more shredded; it was sheer agony. The expected length of surgery had long since passed when the call finally came through; it was good news. Mr Butler had worked miracles and whilst the procedure was more complicated than expected, we couldn’t have hoped for a better outcome. I relayed the news to Katie’s family sharing tears of joy and relief together.

Having been in such a frantic state all day, I later started to question whether I’d misinterpreted what Mr Butler had relayed to me for what I wanted to hear. Did I get I get all wrong? This was one of the many challenges of going through all this against the backdrop of Covid. But the toughest aspect of all was not being there when Katie woke up, to hold her hand and support her through recovery. The 5 long days until she came home felt like an eternity.

With the surgery behind us, the post op consultation came around and we found ourselves back at the Royal Marsden ready for the results of the pathology. Unfortunately our worst fears were realised when Mr Butler revealed there were signs of ovarian cancer. This came as a real blow. It felt like we’d been through so much already and hadn’t even begun to start processing the trauma of the op or the impact to our dreams of starting a family.

My initial thoughts were immediately drawn to my personal experience of the disease; losing my Mum to lung cancer only a few years previously, less than 2 months after her diagnosis. I was heartbroken and immediately feared the worst. The rest of the consultation was a blur but one memory remains perfectly clear. Having just been given the news, the first words from Katie’s mouth were to ask about the heredity risk to her sister, mum and auntie. Even in the darkest of hours, her thoughts were on our loved ones.

The cancer diagnosis would mean 6 cycles of chemo, at 3 week intervals.

Having looked at the calendar, if everything went to plan we might be through the other side by Christmas; this was something to hold on tight to. The morning of the first cycle felt eerily similar to the day of surgery, leaving my wife on the steps of the Marsden once again to face the treatment alone. We shed many tears amongst the anxiety and apprehension for the journey ahead. It was the fear of the unknown that I really struggled with. What would she have to go through in there? How would she respond to treatment? I so wished I could be there with her just to say that everything was going to be ok. It was unbelievably tough.

Katie made it through that first day and despite COVID, we found a routine that worked for us, having our breakfast in Gails bakery on the Fulham road each morning before treatment, ticking off the 3 weekly cycles as they came around. As I couldn’t be in there with her for chemo, I thought about how I could lift her spirits in other ways. For each cycle I decided to get her a little surprise to open on the morning of treatment. These ranged from silly rhymes I’d written, to a montage of video messages of support that I’d asked her friends and colleagues to record in time for her final treatment. But unsurprisingly, the Percy Pig advent calendar went down the best!

The 3 months of treatment passed like a whirlwind, before we knew it the last cycle came around and we planned to celebrate that weekend in style with a bottle of the good stuff and her favourite meal: picky bits (a smorgasbord of cheese and cold meats that had been off the menu whilst in treatment!) It was a fantastic feeling to celebrate this milestone especially with Christmas just around the corner. Unfortunately COVID reared its head once again which meant our planned Xmas celebrating with family would be put on hold as we entered another lockdown. This felt particularly unfair given everything we’d endured the past 6 months.

Then one week into the new year, we received the wonderful news that Katie had been given the all clear. Such an amazingly uplifting moment that I’ll remember for the rest of my life. Of course, we are by no means out of the woods with the next scan in April on the horizon and ongoing monitoring for the foreseeable future. That being said, we are hugely grateful to be in the place we find ourselves today and remain ever optimistic for the future.

So what have I learnt as a husband caring for a partner through cancer?

At times, it all felt pretty bleak; like the challenge was too much to bear. But having begun to reflect on and start to process my experience, there were many heartwarming moments along the way that continue to give me strength and bring a smile to my face as I write this.

One of my biggest fears before chemo was the toll it would take on Katie both physically and mentally. I felt like it was important that I tried to keep her spirits up in whatever way possible such as encouraging her to continue to do the things she enjoys, like walking. I was also conscious that I didn’t want to be too pushy yet I could see the positive impact it was having of her getting outside for some regular exercise, although there were days when this wasn’t feasible. It was about finding a balance, talking about how she was feeling that day and understanding what she could manage.

But communication works both ways. Initially I felt like I had to be strong, put a brave face on and not let my emotions out in front of my wife. Katie had enough on her plate; the last thing I wanted to do was add to this. I’d been bottling things up for a while then one Sunday morning whilst out for a walk, it all came out. Initially I felt a deep sense of shame about breaking down given everything that she had to cope with herself, but equally it was such a huge relief and we were stronger for it. In retrospect, I wish I’d been able to share more with her at the start of our journey; we make such a good team and things feel so much easier once they’ve been shared.

I was also reluctant to tell my mates about what we were going through and remember having to really psych myself before a call for fear of blubbering down the phone! I was anxious about showing my vulnerability as a guy but the more I opened up, the more love and support I got back in return. Getting it all out made me feel so much better and knowing that people were there, supporting us, willing us on, gave us huge strength. I would try to go out regularly with friends for a run or cycle and found the exercise not only great for my mental health but it was also good time to talk along the way.

I also started counselling sessions once per week which was helpful to get things off my chest in an environment where I would not be judged.

Whilst communicating openly was important, I also saw first hand the amazingly positive impact of finding a purpose. When Katie had the ingenious idea of making Christmas baubles for family and friends in the run up to Xmas, I wasn’t sold! However, demand for the decorations quickly expanded and before long she’d recruited her mum and auntie to the cause and had a production line set up in our kitchen. I’m pretty sure she supplied baubles to half of South West London, raising £4,000 for charity in the process! Having this focus in her life was so helpful, particularly towards the end of her treatment when the physical impact was most acute. It really doesn’t matter what the purpose might look like, although I’d suggest avoiding baubles this Xmas as Katie holds a monopoly on the London market!

Chemotherapy over 3 months felt like a long stretch so we found it really helpful to break the journey down into small chunks and to not look too far into the future. As a keen runner, I’ve learnt through experience that in a marathon, you don’t worry about mile 25 in the first mile; instead run the mile you’re in! I know it sounds cliche but this mindset was really helpful, focusing on one cycle at a time, finish that, onto the next.

I’ve also found the process of writing this story cathartic, revisiting some of the emotions to help myself start to come to terms with these. Sharing the experience on social media (albeit vicariously) has also enabled us to reconnect with friends we’ve lost touch with over the years. The amount of support we’ve both received along the way has been truly humbling.

Whilst 2020 won’t go down as a vintage…

… we’ve made it through thanks to the love and support of each other, our family and friends. I’ve been blown away by how Katie has dealt with everything thrown her way; from the operation to the diagnosis and subsequent treatment. But I’m most proud of the way she’s used her experience to make the lives of those on a similar journey just that little bit easier; whether it was raising money for charity or sharing her vulnerability by writing her story.

Our experiences have made us stronger together than ever and are so excited to move onto the next chapter in our lives which we hope will one day include a third member of the Wilkins’ team!