Let’s talk about ‘Cyril’

Last weekend was a good one…and it has followed on into the week! I’ve been out with friends and family quite a few times which has been a big step for me to take.

On Saturday, I had a visit from my cousins who were over from Israel. They came armed with some very tasty treats! I also went out for dinner with my friends, Dominique and Rosie, which I haven’t done in a long while. It felt a little strange but I had a really lovely meal, consisting of fish and chips, and then some Kinder Egg fun….We set ourselves the task of finding Elsa from the ‘Frozen’ toy set to complete my friend’s collection, and by purchasing the majority of the Kinder egg stock from Tesco, I’m pleased to say that we succeeded! Opening 27 Kinder Eggs provided a lot of chocolate and laughter…Two of the best medicines around.

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On Sunday, I felt able to go out again and strayed from my usual healthy diet to enjoy a coffee and cake with a friend. Although I get nervous about going out, last weekend was another reminder that once I am out, a lot of the anxiety disappears. On Sunday evening, my siblings and I went out for dinner for a pre-chemo treat/belated celebration for my eldest sister’s birthday (we never got to celebrate as it was a few days after my surgery). We ate at one of our favourite restaurants called Diwana in Euston…I highly recommend it!

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On Monday 17th October, I was back on the chemo ward to complete cycle five. Everything went smoothly, although as is becoming usual for me, I needed IV magnesium again. Chemo does also lower my potassium, but I’m still managing on my daily intake of potassium drinks. It was great to see my wonderful friends Laura and Rosie at chemo. Rosie restocked my game supply and so we played a lot of Top Trumps, and Laura brought books on Picasso to look at. I also passed the time by finding a new pixie for my collection (see last blog for more on this) and doing some online clothes shopping.

On Wednesday 19th October, I was out again – this time for brunch with my cousin. Then I was back at the Marsden that afternoon for my first session of acupuncture. I was referred for this to help with the night sweats that I have been having since my body went into the menopause. They can be really intense and I often find it hard to sleep because of them. I feel really positive about the team approaching my symptoms from a holistic approach, and it is wonderful that the Marsden offers these therapies. I’m going to be having six sessions, after which the therapist plans to teach me a simple of way of using the needles at home. After my session, I went out for dinner (again!) with my dad and sister. I am incredibly proud of myself because I am slowly beginning to feel more confident about eating out in restaurants. As I have said before, when I was first diagnosed with ‘Cyril’, going out to eat made me really nervous. I can’t fully explain why, but I didn’t like the idea of eating in a busy atmosphere and eating food that wasn’t cooked at home. But this week has helped me feel less anxious about it and I know this is working because I managed to do it twice in one day!

This week I have also been back to Chai Cancer Care for my second physiotherapy session in the gym. I find these sessions exhausting but invigorating at the same time. They are also a great reminder that I am getting stronger even if I don’t always feel it. A few months before my diagnosis, I got over my dislike of exercise and joined a gym. I almost passed out in my first session with the trainer – I was literally on the floor seeing stars, and he had to get me a cereal bar and a sugary drink to get me back up! Over time, I started to see a real improvement in my fitness, but then the diagnosis came and I’d not been back to gym since until only a few weeks ago. I know that at the moment I am not a fit as I was, but my battle with ‘Cyril,’ has made me determined to stay in shape. I find that exercise not only changes your body, but also your mood. Who knows, I might get so fond of exercise that one day I enter a charity run…or maybe even a marathon?!

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My worries and fears about the future continue. I think this is happening more now because I have three sessions of weekly chemo left before moving to my maintenance treatment, which will be every three weeks. A couple of days ago, someone made me think of the Maori proverb,‘Turn your face toward the sun and the shadows will fall behind you,’ which is the way that I would like to be approaching the future. It’s obviously much easier said than done, but I know that I have my medical team, family and friends to support me in doing it.

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With the aim being to focus on positive things that are happening, I thought I would share two exciting things from this week… My wonderful school is taking part in ‘Stand Up For Cancer’ on 21st October, which is raising money for Cancer Research. I cannot wait to hear all about the challenges that the pupils and my colleagues will take part in, and all the money they will be raising. It was also great to hear that our French partner school will be visiting London next year. After numerous Skype lessons that I and my counterpart in France had arranged, in which the children had the chance to learn from each other, I cannot wait to welcome Pierre and his class to London!

As I cannot be at school to join in with their ‘Stand Up To Cancer’ fundraiser, I wanted to find a way that Finding Cyril could still play a part in this day that is all about raising awareness. So, I am asking people to do three things after reading this blog.

  1. TALK

Have that vital conversation about any family history of breast, ovarian and prostate cancer. Then talk to your GP about any concerns and to see if you are eligible for genetic testing (I’ve added a bit more about BRCA and my experience of testing at the end of the blog).

  1. LEARN THE SYMPTOMS

The symptoms of ovarian cancer include:

  • Persistent pelvic or abdominal pain (that’s your tummy and below)
  • Increased abdominal size/persistent bloating 
  • Difficulty eating or feeling full quickly
  • Needing to wee more urgently or more often than usual

Learn them and if you are concerned then tell the GP – don’t be satisfied with the diagnosis of IBS for symptoms that may be indicative of ovarian cancer.

  1. AND TELL OTHERS!

Talk about the symptoms with your female friends. The more we talk about the symptoms, the more we know what to be looking out for.

My experience of BRCA gene testing

In my family, the BRCA 1 mutation has come from my grandfather’s family. My grandfather tested positive which meant my father and aunt had to be tested. My dad tested positive so then my three siblings and I were tested, but I am the only one who carries the gene mutation. Since being diagnosed with ‘Cyril,’ I have found out more about my family history. My great grandfather was one of fifteen children. He had five sisters, all who passed away from cancer. It appears that two sisters passed away from breast cancer and three from stomach cancer. Although we can never be sure, knowing what we do now about the BRCA 1 gene mutation, we have wondered whether the cases of stomach cancer may have actually have instead been related to ovarian cancer.

It was really frightening finding out about the mutation but there is not one minute where I question my decision to get tested. Knowledge is power, and being BRCAware means that you can take steps to manage the risk. I remember the day when I answered the phone and received the news. I didn’t know what to think or feel. It felt like I had been told that I had cancer. Once I got over the initial shock I began to feel safer knowing what I did; it allowed me to make choices about my body. I didn’t want to wait until 30 to have breast screening, so I took control immediately and started having screening every six months. I had also planned to have my ovaries and CA 125 level checked once a year. I ended up only having this checked once last October before ‘Cyril’. It shows you just how quickly it can happen.

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  • For more information about BRCA 1 and 2 mutations see the links below:

https://www.royalmarsden.nhs.uk/sites/default/files/files_trust/brca_0.pdf.

http://www.nhs.uk/conditions/predictive-genetic-tests-cancer/Pages/Introduction.aspx

  • For more info on Stand up to Cancer 2016, check out their website: 

https://www.standuptocancer.org.uk/

I would like to end by saying that Finding Cyril has already raised over £7,000 for the Royal Marsden Charity. I cannot thank everybody who has donated and shared the Just Giving Page enough; this support means the world to me. The Marsden has a very special place in my heart because they have been, and continue to be, by my side for every step of this journey. If you would like to do donate, you can do so at:

https://www.justgiving.com/fundraising/Finding-Cyril

4 thoughts on “Let’s talk about ‘Cyril’

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