BRCAfest – Food, fun, and fundraising!

On Sunday 9th April, I hosted BRCAfestmy first fundraising afternoon for the Royal Marsden Cancer Charity. The aim of the event was to raise awareness about BRCA gene mutations and ovarian cancer, as well as funds for the Royal Marsden cancer Charity. It was an honour to be joined by Mr John Butler, Consultant Gynaecological Surgeon at the Royal Marsden Hospital. Mr Butler and his team carried out my surgery in August 2016.

 There was a lot of preparation ahead of the day, and even more so on the morning of the event. I had some great helpers with me and it didn’t take long for it all to come together: we had amazing decorations, food and raffle prizes that people had so kindly donated. After a few hours of work, it was amazing to see the room ready for the event – I was so excited by that point! 

 The afternoon started with a chance for everyone to eat, drink and meet others. There were also lots of things on sale including some handmade cards and keyrings, as well as raffle tickets and auction prizes. Once everyone was seated I welcomed everyone and gave a short speech. I had been so nervous about the prospect of talking to a room a full of people. I think that blogging and talking about my experience has really helped me feel confident talking about cancer and my journey, but where public speaking is concerned, I’m used to talking to a class of children rather than a room of 150 adults using a microphone! Although, once I started to talk, my initial nerves disappeared and I actually ended up enjoying it.

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After my speech, Mr Butler presented a talk about the history of, and developments in, cancer and specifically ovarian cancer. He also spoke about BRCA gene mutations and the research and development that the Royal Marsden is doing in these areas. I learned so much from the talk. For example, about the developments in ovarian cancer treatment and drugs. While Mr Butler was talking, I remember looking around the room and seeing everyone so engaged, and I was so pleased to have played a part in raising awareness in this way. Mr Butler coincidently ended his talk with the same ending line as my speech – “knowledge is power,” which was great, as it was what I had hoped the main take home message of the day would be.

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 After Mr Butler’s talk, we held the raffle draw and auctionIt was so exciting and such a joy to see people win the amazing prizes that had been donated. It was at this point I had another really good look around the room to soak up the atmosphere and remind myself what all the hard work preparing had been for. I also couldn’t help but think how good it would be to do this again. And when I get an idea in my head, I tend to keep going with it, so watch this space for details of BRCAfest2018! 

 As soon as we had cleared the hall, a few of us sat round and started to count up the money we had raised. I am so excited to say that the grand total raised by BRCAfest was £5,402.17! This figure is just incredible, and it is so overwhelming to think about all the support that people have given in order for us to raise as much as we did. 

 Clearing up BRCAfest meant taking home A LOT of leftover food and when I saw just how much cake was left over, I instantly knew what I had to do. As I told everybody at BRCAfest, my medical team have been like my second family through treatment, and so I wanted them in some way to be part of the event. The next morning, I booked myself a cab and headed up to the Royal Marsden to deliver the cakes to some very special people who have, and continue to, take incredible care of me. They helped save my life and so giving them cake to have with their cups of tea on a Monday morning was just a small thing I can do to remind them all just how special they are to me. 

 I would like of say a huge thank you everybody who attended BRCAfest and those who donated gifts and food. And a special thanks to the children at Deansbrook Primary School and Little Reddings Primary School for making cards and keyrings that were on sale, to Fiona Cohen for afternoon doing her drawings for us and to Georgine Waller for capturing it all on camera. A big thank you to Hartley Hall for donating the venue for the event and finally to Mr Butler for being our guest speaker. 

 BRCAfest happened ten months to the day of my diagnosis, so on a personal note it was another celebration of how far I have come in such a short space of time. I often find it hard to make sense of just how much has happened in less than a year. I feel like a different person, and in many ways, I am. Photographs and images are an amazing way of capturing moments, good or bad but also for making sense of change. The photo on the left is from 9th June 2016 when I was on my way to see Mr Butler for the results and diagnosis, and the photo on the right is of me and Mr Butler at BRCAfest. To me these capture the same person, but also highlights some of the differences I see in myself.

 Now that the event is over, there are lots of things I need to focus on over the coming weeks. I have my Avastin treatment as well as my three monthly ‘breast MOT to check that my potentially killer mutant boobs are behaving themselves, and are only (thanks to the menopause) guilty of increasing in size…which I don‘t class as a real problem! I will also be taking a big step at work and getting back in front of a class of children to teach my first French class since May 2016. There is lots to come over the next few weeks, but the enjoyment and success of BRCAfest has definitely helped to set me up positively for it all! 

All photographs from BRCAfest 2017 can be accessed using the link below:

https://myalbum.com/embed/dMbZX2sppe0k

BRCAfest

It is nearly time for BRCAfest! We currently have 54 tickets that will be available on the door for £20. You can still purchase tickets online by using the link below.

https://www.eventbrite.co.uk/e/brcafest-tickets-32137050784

1:30-2:00 – There will be a chance to look at things to buy, purchase great drawings by Fiona Cohen, purchase raffle tickets, enter the auction and eat and drink lots of tasty food.

2:00 – A brief introduction by Laura Moses. This will be followed by a talk from Mr John Butler, who is a Consultant Gynaecological Oncology Surgeon at The Royal Marsden.

After the talk we will do the raffle and complete the auction! Please bring extra money with you, if you would like to take part in the raffle or auction. Raffle tickets cost £10 per 5 ticket strip, and we will be accepting cheques for auction prizes.

 

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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

Misdiagnosed as IBS

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“This cancer is aggressive. It could even have come on in a matter of weeks.” This is what my consultant told me after giving me the diagnosis. The shock of the diagnosis was even more compounded by the fact that I had a pelvic scan and CA125 blood test 7 months ago. My one saving grace is that the 4th doctor I saw picked on the cancer from the symptoms I had.

The aim of this blog is to raise awareness to the fact that these symptoms can be easily misdiagnosed as IBS. This is what happened to me 3 times in the space of two weeks. Initially, my GP, a gastroenterologist and an A&E doctor all assumed I had IBS and constipation after feeling my stomach and doing a generic blood scan. The symptoms I had included:

  • Severe abdominal bloating (I was asked by several people when I was due as I looked 4 t0 5 months pregnant)
  • Pain when urinating
  • Feeling full quickly
  • Severe constipation (I hadn’t gone to the toilet properly for almost a week.)

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Due to the misdiagnosis, I was prescribed laxatives. Whenever I took these, I felt worse and the pain and discomfort intensified. Once I was diagnosed properly, my doctor explained why this was. The bloating was from a huge build up of liquid around my organs (they drained off almost 5.5 litres). From what I understand, this liquid put pressure on my bowels, constricting them and stopped me from using the toilet. When I took the laxatives, I felt worse because I got more and more clogged up.

These symptoms came on quickly over a couple, of weeks and as they went on they intensified. It wasn’t until I went to A&E for the second time (due to the pain and discomfort) that they finally did a CT scan.

These symptoms can be too often be confused with bowel issues. If you experience these symptoms, please go straight to the GP. Nag, moan, complain and make a pain of yourselves if you need to girls but please make sure you get checked! I am just very thankful, grateful and happy that my symptoms were picked up on and that I am able to have the treatment to get better.

If you experience these symptoms, ovarian cancer must be considered regardless of age. It is rare at a young age but it can happen.

For more information look at the websites below:

http://www.nhs.uk/conditions/cancer-of-the-ovary/pages/symptoms.aspx

http://www.targetovariancancer.org.uk/about-ovarian-cancer/what-ovarian-cancer/ovarian-cancer-symptoms

https://www.macmillan.org.uk/information-and-support/ovarian-cancer/understanding-cancer/signs-symptoms.html

#FindingCyril