My name is Laura Moses and I’m 29 Years old. At the age of 26 I found out that I carried a BRCA 1 gene mutation. The year after this, I was diagnosed with stage 3 ovarian cancer. I had six cycles of chemotherapy, radical debulking surgery and one year of Avastin maintenance treatment. I have been in remission for just over a year. I want to share my story to do my part to raise awareness of BRCA mutations and ovarian cancer. We need to keep talking about the signs and symptoms. This is why I started a blog called “Finding Cyril” when I was diagnosed. To help me deal with the news of my diagnosis, my dad decided we should call the cancer ‘Cyril.’
I am now on the life after cancer train, but I continue to blog about the highs and lows that this part of the journey brings, in order to help others at this point. I have a lot more to do to keep myself well. If I get to three-years cancer free, I will have a preventive double mastectomy to remove my breast cancer risk.
On the morning of 24thAugust 2016, I made my way up to the Royal Marsden Hospital ready to undergo what is referred to as radical debulking surgery. It was a fairly complicated procedure, and it is safe to say that I am now somewhat lighter inside. If we went into the nitty gritty of my surgery you might end up looking up several random parts of the body such as Pouch of Douglas. Who even knew such a thing existed?! I’d always just associated cancer with chemotherapy, but reflecting a year on in some ways surgery was the point in the journey where I was challenged the most, not just physically but also emotionally. As I have said before, my very cool scar from surgery is my daily reminder that I won the first boxing match against Cyril.
Fast forward exactly 365 days to 24thAugust 2017 and I made the very same trip up to the Royal Marsden for a CT scan to check that Cyril has stayed well away and all is healing well post surgery. The last CT I had was in November 2016 just before I started my Avastin treatment. The fact that I had my scan a year on from surgery was an important milestone for me. Below is the only photo I have from yesterday. It was taken by the paparazzi (AKA my dad). Of course I don’t play by his rules for photo taking. In this photo I am pulling a stupid face and tilting my head; his two pet hates.
Since my surgery last year, Cyril hasn’t given my team any reason to suspect he’s made his way back. I’ve had regular checks and Avastin IV treatment every three weeks and this routine has been like a safety net to me. However, it has definitely not stopped me worrying especially more recently as I start to get used to the idea of not having such a secure safety net once my Avastin treatment comes to an end. It’s meant that anxiety has had a very easy route in for me, and can often circle me like a shark in water. So much so that I’ve named her Jaws.
Jaws and I have recently been making an effort to become friends. She’s a difficult character and attempting to befriend her is definitely not easy. But luckily/unluckily I see her frequently enough to be able to start making progress. She also seems to have Cyril on speed dial, so I’m often left having to contend with the two of them causing trouble together.
Last week, I took a big step forward in my befriending quest. For a while now I’ve been holding off confirming my last Avastin appointment on the chemotherapy ward. I’ve always known that my Avastin will end in November, but I’ve been avoiding putting the last date in my diary because in some weird way I don’t want it to end. Ending Avastin means going down to three monthly check-ups instead of three weekly check-ups. But last week I finally did it. I was nervous all the way up to the ward, and there were so many emotions going through my mind. Once I confirmed the date I felt a great sense of relief and as it was as though I had taken back a bit more control from Jaws. I see it as if she is always going to be about somewhere, but by taking steps like this it helps to make sure that I direct her away from me rather than have her always circling me. She will definitely keep coming back, but it helped to remind myself that I took that step last week and so I could do it again with my scan this week.
The day before the scan was also a good test for me in reminding myself not to let Jaws get too close. I tried to hold onto to the facts. My cancer markers have stayed down, I feel physically well in myself and my team don’t have reason to suspect Cyril is back. When I noticed myself getting too caught up in a battle with Jaws, I made the conscious effort to go and do the new thing which I’ve found helps calm me down. I went swimming, which I realise given the whole shark thing is fairly ironic, but it really does work.
After I had the scan yesterday, I sat in the waiting room ready to see my consultant for the results. I remember feeling strangely calm, even when realising that I would be seeing him in the same clinic room I was in when I got given my diagnosis last year. It was a huge relief to hear him say that the scan looked good, that there were no signs of cancer and that all my treatment has clearly been doing a good job of keeping my body safe. For the first time I felt able for the first time to ask him about what happens when Avastin stops. This is something I’ve made a lot of effort to avoid talking about because the end of active treatment is a scary thought to me. I worry about not having that safety net and being more exposed to Cyril as well as my increased risk of breast cancer due to BRCA. Some of that fear was lessened yesterday once I finally opened up the conversation about the follow ups, and deep down I knew it would be because Marsden magic is very powerful.
“…One of the strange things about cancer is that it leaves you with so many anniversaries and they all have importance.”
As much as I try not to, I do often wonder to myself what if Cyril comes back or breast cancer comes along before I’m able to have my preventative mastectomy, which I can’t have this yet because my team want my risk of reoccurrence to be lower before I embark on more surgery. When I find myself thinking about this I can get really caught up in worry and often find myself in a very dark place. One of the things that helps me is reminding myself of all the inspirational people that have come into my life because of cancer. I have met people who have lived and are living with it, and those who are living with a reoccurrence. The strength and positivity I see in these people is such an encouragement, and having that network of support is like another safety net which isn’t going anywhere.
Yesterday was a strange day for me and also for those around me. This week we’ve been all been talking a lot about what it was like a year ago (specifically on 24thAugust 2016), and how different things are one year on. One of my sisters reminded me of how she remembers wandering round outside the hospital for seven hours waiting to hear updates from my consultant. I know exactly what she did in those seven hours because she wrote in my journal, so I didn’t suffer from FOMO! My other sister also reminded me of her experience of that day last year. While I was in surgery she found out that she was pregnant with her third baby. We’ve often spoken about how although wonderful news, she also had lots of difficult feelings about it that day. I was the first person she told about the pregnancy a few weeks after surgery. I like to think of it as a lovely moment of coincidence, followed nine months later by another coincidence when my niece arrived exactly on her due date, which was an Avastin treatment day for me. I was the first family member to meet her and also learn that she is my namesake, with Laura as her middle name.
And as I write this on Thursday night, I think back to where I was this exact time last year and the moments that stand out for me the most. This time last year surgery was finished and I was sedated on a ventilator in critical care. One of the strange things about cancer is that it leaves you with so many anniversaries and they all have importance. The day after surgery I was woken up and my recovery started. This will always be such significant point for me in my journey because it was the first time since my diagnosis that I was the most cancer free I had been. The other important memory I have was leaving hospital a week later. Recovery was slow but I was lucky to be able to do most of it at home because my consultant was happy to discharge me after six days. The morning I found out that I could go home my sister came to see me before she went to work. At my request she gave me a shower, shaved my legs, painted my nails, did my hair and put my make-up on before I left hospital. I really wanted to feel as much myself as I could when leaving, even though I could hardly move! It was another big milestone for me and I remember feeling so happy…which was probably a little to do with my pain relief medication! I feel this is an appropriate point to thank her again for doing this, but also offer her first dibs on doing the same after my have preventive mastectomy one day!
Links to The Royal Marsden:
Visit Laura’s incredible Blog Finding Cyril HERE
Or Follow on Twitter: @FindingCyril