Finding Cyril’s first online auction!

FOUR SEASONS COUNTRY CLUB

 QUINTA DO LAGO

ALGARVE

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2 bedrooms/2 bathrooms villa (can sleep 6). Set within 17 acres of private gardens on the prestigious Quinta do Lago Estate. A wide range of sport and leisure activities are available.

 ARRIVAL – THURSDAY 7th DECEMBER 2017 departing THURSDAY 14th December 2017.

 ACCOMMODATION ONLY – NO FLIGHTS

 DISCOUNTED GREEN FEES on the Quinta do Lago Golf Courses and on others nearby

Amenities:

 Fully fitted Kitchen with private terrace

Daily maid Service

Bathrobes and towels provided

Indoor and Outdoor pools

Gym

Squash

Snooker Room

Table Tennis

Bar with Log fire

Restaurant

Poolside Bar and Restaurant

Tennis Courts

 

This prize is donated by Peter Schwitzer and Peter Stern

The starting bid for this prize is £400. If you are interested please email findingcyril@gmail.com with your bid. Payment can be made through our Just Giving Page or straight to the Royal Marsden Cancer charity. I can advise people on how to do this. Our auction begins today and will run until 30th June 2017.

Please share the details of this auction with as many people as you can.

Thank you for your continued love and support. It means the world to me.

Laura

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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

Marching through March for the Marsden

On Sunday 19th March, The Royal Marsden held their annual Marsden March – a 14 or 5 mile walk between the Sutton and Chelsea hospital sites. Each year the march raises money for The Royal Marsden Cancer Charity, all of which goes toward treatment, research and support for cancer patients, with the ultimate goal being ‘a future beyond cancer.’ The charity also encourages people to host their own marches in support of the Royal Marsden Cancer Charity. This is exactly what my school, Little Reddings, did on Monday 20th March.

I’ve worked as a teacher at Little Reddings for about two years. I remember walking in for my interview and instantly getting a sense of just how supportive and friendly it was. Little Reddings has played an integral part in my personal and professional development as a teacher. Last year, before I had to stop working, I took on the role of French teacher and the Modern French Language coordinator. This position is something that I am incredibly proud of, and knowing that I had this to go back to after treatment, was a key factor in keeping me focused and motivated.

Our Marsden March started with me leading an assembly in the morning. I introduced the children to The Royal Marsden Hospital with photos and images. I spoke about my journey with ‘Cyril’ and played Rachel Platten’s ‘Fight Song’. I asked if anyone knew why this was such an important song to me; they rightly said that they thought it was because the song about fighting and staying positive. I explained that I first heard Calysta Bevier, a 16-year-old American young woman who is a survivor of stage 3 ovarian cancer, sing this song on America’s Got Talent, soon after I was diagnosed myself. Hearing this song was a significant moment for me; it soon became a song that I really connected with on an emotional level. There were times during treatment when I would listen to it repeatedly. I still put it on when I feel low or anxiety takes over. Hearing this song was probably the first time that I truly realised just how powerful music can be. Have a look at the videos below to hear Calysta Bevier and Rachel Platten singing ‘Fight Song.’

https://www.youtube.com/watch?v=9msiUy0JN64

https://www.youtube.com/watch?v=xo1VInw-SKc

I then spoke to the children about the history of The Royal Marsden Hospital, including The Oak Centre for children and young people diagnosed with cancer. I also talked about the staff at the hospital and all the different people who make the hospital run so smoothly, such as: the doctors, nurses, researchers, pathologists, physiotherapists, dieticians, psychologists, receptionists and the catering and cleaning staff. We went through some of these roles and I explained how each person’s role helps to keep the hospital running smoothly for the patients. My experience is that the staff often go above and beyond to make patients feel as comfortable as possible.  One example that I’m always reminded of is the catering lady on the chemotherapy day ward. Whenever I’m there, she always takes time to talk to me and remembers that I like apple juice, so makes sure I that I have some soon after arriving on the ward.

I showed the children some of the team who look after my care, we watched a video of the Duke of Cambridge talking about hospital and then a video about some of the more recent technology that the hospital uses. I wanted the children to see that technology, which is so important to our everyday lives with things like phones, computers and television, is also a vital tool in cancer treatment. By supporting the Royal Marsden Cancer Charity we are able to support the continued development and use of innovative, lifesaving technology. During my surgery, the team used something called a Plasma Jet; a surgical device used for women with advanced ovarian cancer. It allows surgeons to target and destroy ovarian cancer cells with greater precision and reduced side effects. Have a look at the link and the video below that explain more about the Plasma Jet and other technological advances used at the Marsden to treat cancer patients.

https://www.royalmarsden.nhs.uk/rm-magazine/new-technology-tackle-ovarian-cancer

https://www.youtube.com/watch?v=W5f5zz5fq40

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It was wonderful to see how focused the children were during the assembly and to hear the comments they made about the issues raised. The sad reality is that cancer is affecting more and more people, including many of their families, so it will be a word that continues to be so relevant to so many. When I first heard the word cancer, I was naturally filled with fear and dread (that’s how the name ‘Cyril’ came about; it felt less scary) As you go through the treatment, you start to see and understand all the different things that cancer can mean, and the national and international community of professionals who are dedicating their work to advancing cancer treatment and care. Over time, you begin to feel a little less fear about the word and see how it means a whole load of different things to different people. My feeling from my own experience is that we should be open and honest about it in order to try to normalise it.

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After assembly, it was time to march. We all headed out to the school grounds: staff, students and families – children from as young as five months took part and everybody was buzzing, even with the rain! It was an amazing feeling to see so much support and awareness. It was also an opportunity for people to reflect and think about those they know who have been affected by cancer. Some children spoke to me about this, talking about people they knew who had cancer. It confirmed for me the importance of providing, not just adults, but also children with chances to have these reflections. As a group we raised over £600 which, when transferred into my just giving account, took the total amount to over £10,000! I won’t even try to put in words what that means to me – really it is beyond anything I could have ever imagined… I keep clicking on the page just to see the figure!

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As we were marching, I was reminded of the fact that it was almost seven months to the day that I had my surgery (some of the key dates over the last year are permanently etched in my mind). To be surrounded by my colleagues, pupils and their families, as well as some of my family, was a reminder of how far I have come in such a short space of time. I’ve gone from being at the hospital every week to now spending more and more time back at school and getting back into my life as Laura, and not just Laura with cancer. I am so grateful to my colleagues, the pupils and their parents for their continued love and support. They have given, and continue to give me, hope, strength and courage. I love my Little Reddings family!

Our Marsden March was an example of how easy it is to march for the Marsden. You can do it, as they say, “anytime, anywhere”. So many of us enjoy going for walks, so why not add a new perspective to a walk you take in the future. For example, imagine if a group of ten people got together to do a mini My Marsden March and each got sponsored £1 by ten people. This would mean they would have raised £100 on a walk. Now imagine if ten of these groups did the same thing…amazing to think, isn’t it!

We marched on Monday 20th March, which is also another significant day – International Day of Happiness. And for me, it really was!

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BRCAfest

After I had my surgery in August 2016, my friend called me with an incredible idea. She had come up with an event to raise awareness about BRCA mutations and the associated hereditary cancers. With the support of our families, friends and lots of other people who have donated things we are very excited that BRCAfest (hopefully the first of many) will be taking place on 9th April. This is event is in support of the Royal Marsden Cancer Charity. Please see the flyer for more details. You can purchases tickets by clicking on the link below.

 

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 We are still looking for raffle prizes and soft drinks for the event. If you are able to help us with this, or know of anybody who is able to help us with this please email findingcyril@gmail.com.

I want to thank everybody again for their love and support. It means the world to me.

Be BRCA aware


Merry Christmas to the Royal Marsden

When I heard the words ‘complete remission’ on 16th November 2016 I was able to breath a big sigh of relief; I had reached a huge milestone. I’m now a few weeks into my second boxing match with ‘Cyril’ – thaim of this match is to remain the champion. As I expected, its been a rollercoaster, with good and bad days. 

 My three weekly Avastin treatment is going well. My tumour markers are behaving and my ‘Normal List’ is helping me to stay focused on reconnecting  with all the things I’ve had to put on hold over the last six months. Doing this is helping me to regain control of my life instead of allowing my fears and anxieties to take over. Sometimes the fears do overwhelm me, but I see it as my job to try and take the reins back when this happens. Otherwise I risk stopping myself from achieving all the things I want to do. It’s like what Dame Elizabeth Taylor once said:

“You just do it. You force yourself to get up. You force yourself to put one foot before the other, and God damn it, you refuse to let it get to you. You fight. You cry. You curse. Then you go about the business of living. That’s how I’ve done it. There’s no other way.’ 

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 This week I was feeling well enough to attend a Monday staff meeting at my school (doing school things was on my normal list) and go to the staff Christmas dinner. It was an opportunity to focus my mind on work for a while which I really enjoyed. Next up on the list is to go to the gym on my own. I’m so grateful for all the support from the Chai Cancer Care’s physiotherapy team who have worked with me on a weekly basis and helped me get to this point. They have given me the confidence I needed to get back to a point where I can think about going back to a gym on my own. 

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 This week I also attended a carol service outside the Royal Marsden in Chelsea to mark the turning on of their Christmas tree lightsEvery Christmas, the Marsden offerpeople a unique way to remember and honour their loved ones. They give the public the opportunity to purchase a personalised star on the Christmas trees, which stand tall and proud outside the entrances of the Chelsea and Sutton hospital sites. You give a donation to buy the star that then goes up on one of the trees. You also receive a gold star lapel badge as a reminder of your star on the tree. The money that the Marsden raises goes back into the hospital to help them continue doing the incredible work that they do. I put a star on the tree year in memory of somebody very close and special to my family, and I will continue to do this each year. It was a beautiful and moving ceremony and I felt very emotional as I thought about everything I have been through in the last six months and what I continue to battle with. I also thought about others who are affected by cancer, and about the inspirational young man who I put a star on the tree for. At the same time, this service gave me a chance to look forward and think about my future. There was something very special about standing outside the hospital that saved my life, surrounded by a beautiful Christmas tree, gorgeous Christmas lights, carol singers and lots of people. 

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Continuing with the Christmas spirit, I would like to share something that my school have done to mark Christmas this year. They decided that rather than giving out Christmas cards to one another, they would instead donate the money they would have spent on cards to Finding Cyril’s just giving pageI felt so overwhelmed by the gesture, and I am honoured to be part of such a wonderful and supportive team. I am so excited to eventually be back at work with them all. 

 These Christmas donation ideas got me thinking, and this week I have come up with an idea that I have appropriately named Merry Christmas Marsden.’ I am sure we all have those moments when our wallet gets too bulky with coins, or we find loose change at the bottom of our bags. So this Christmas, why not count out some of these coins and donate the value of them to the Finding Cyril’s fund for the Royal Marsden? I opened my wallet this morning and had change to the value of £1 in coins, so I donated this to Marsden by texting FICY58 £1 to 70070. 

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 You can donate £1, £2, £3, £4, £5 or £10 by text, and anything from £2 upwards online on the Just Giving Page. If your loose change makes up less than £1or you just want to get rid of your loose coins I have Royal Marsden Charity boxes to fill upPlease email findingcyril@gmail.com if you would like to do this. These small donations add up and will contribute to the on-going care the Marsden offers people living with cancer. So go on…lighten your wallets, rid yourself of noisy loose change and donate to a great cause this Christmas.

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 As we approach the Christmas holiday and end of the year I’ve been reflecting on my year and all that has happened in it. I think about just how special the Marsden is to me, not just the doctors and nurses, but everyone there who works tirelessly to make a difference to people living with cancer. It is because of them that I’ve got to the point where I can do ‘normal’ things again and even new things. It means that as I bring in the New Year I can look ahead to getting back to being ‘Laura Moses.’ Because whilst ‘Cyril’ is a part of my journey and identity, it is definitely not all of it. So thank you and Merry Christmas to the Royal Marsden.

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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

My toolbox for treatment

On Monday 10th October, I completed part two of cycle five of my chemo. Everything went to plan, but it was a slightly longer session because I needed to have IV magnesium. This was actually quite a good thing because it meant that I could take a break from the daily magnesium drinks that have been playing games with my stomach! It was wonderful to have a visit from my fantastic friend and brilliant artist, Laura Footes. She took my mind off the cold cap and chemo by bringing in some books about some of my favourite artists for us to read. My degree is in French and History of Art and I’ve always seen art as a way of escapism. As Pablo Picasso said, ‘Art washes away from the soul the dust of everyday life.’

Spending time talking about and looking at art with Laura during my chemo made me think about sharing a few of the other things that I do to help me switch off, stay positive, stay calm and keep a sense of normality during my fight with ‘Cyril.’

  1. The power of the pixie

The first thing I’m going to mention might seem a little bizarre…Some of you may know that I’m an avid pixie collector. This collection began when I spent a year living in Old Lyon and discovered an incredible shop that sold all sorts of pixies. Over the course of the year, I built up my collection and so when I returned to London, I was overjoyed to discover a stall in Camden that also sold them. And my collection has continued to grow. Since being diagnosed with ‘Cyril,’ I’ve spent a lot of time on the Internet and found some great websites that also sell them. In fact, the other week I found myself ordering some whilst in the chemo chair! Adding a new member to my ever-growing pixie family always cheers me up and puts a smile on my face. It also means I have more choice with which pixie to place my lottery tickets under. This is a ritual that I’ve been sticking to ever since I won a nice sum of money from a ticket that I’d accidentally left under a pixie! It goes without saying that ‘Cyril’ can brings dark days, but as strange as it sounds, the pixies make me smile and smiling is important because it can easily brighten up some of the dark moments. Below I have shared photos of my collection and a photo of Old Lyon where I first discovered these pixies.

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2. Being kind to your body 

Another thing that I’ve found helpful to keep up with is getting my nails painted and other than a little break during surgery, ‘Cyril’ has not stopped my fortnightly visit to the nail bar! It’s always a great distraction to choose nail colours and designs and I feel good about myself when my nails are done. Fighting ‘Cyril’ can make you feel very different about your body and appearance, so I’ve found it helpful to do things that make you feel good about yourself and how you look. Other things that help me to feel better about my appearance are facials by my superstar auntie! Chemo can affect your skin so these facials help me to relax, but also treat and calm my skin. I’m also looking forwards taking part in a Look Good Feel Better workshop at the Royal Marsden next month. This workshop is run by a charity and offers women an afternoon of skin-care and make up tips to help increase self-confidence and self-esteem, which can so easily be affected by the changes to your body as a result of cancer and chemotherapy treatment. You can find more information on their website http://www.lookgoodfeelbetter.co.uk/.

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As well as enjoying having my nails done, I’ve also always loved shopping. I’ve always been a good (‘good’ is code for big) shopper, but since being diagnosed, buying new things to wear has not really been on my mind. However, more recently I’ve been starting to think about getting back into shopping. It can be a good pick-me-up and it certainly was this week…I decided to make my feet sparkle with some new shoes on Wednesday after I had my 3 monthly breast check-up, which I’m pleased to say showed no changes or abnormalities. I have these checks because the BRCA 1 mutation also increases my risk of breast cancer.

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  1. Mindful activity

Mindfulness exercises and colouring have also become very important to me during my treatment. Since diagnosis my colouring book and pens have rarely left my bag and are always with me during chemotherapy sessions. I find colouring allows me to switch off my brain from other thoughts, focus only on the moment, and reduce any anxiety. Another helpful mindful activity for me has been listening to music. Anxiety is something that I’ve had to get to know and understand since diagnosis. It’s not something that I, or anyone, can avoid but the important thing I’m learning is that there are ways that you can reduce it, even if it doesn’t always feel like it. There are times when anxiety makes me feel like my heart is popping out my chest, and one of the things I’ve found is that putting my music on loud is a great distraction. I can focus on the lyrics and it helps to rest my mind and make anxiety gradually fade away.

  1. The little family members

I’ve said so many times before how much I value having my friends and family around me and giving me such amazing support through my journey with ‘Cyril.’ But one of the things which has been especially important to me is having time with my wonderful nephew and niece. Children have such a unique way of cheering you up and making your heart sing. I’ve always loved being an auntie but having them around when I’ve had difficult days during this journey has been amazing. They keep me completely distracted and give a unique type of support. I’m so lucky that I get to see them so often and I love spending time with them.

This week, their mum left me and my other sister in charge of them, (foolish) so naturally we decided to give India-Rose an introduction into fashion and accessorising… As with all my family, she is even sporting a Finding Cyril band! I also have a crazy amount of videos of them on my phone, which I also love to watch when I feel low. I’ve included one below; a video of my nephew, Raphael, explaining how he recently fractured his ankle!

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  1. Trying something new

Fighting ‘Cyril’ has meant that I have quite a bit of time on my hands. When I was first diagnosed I thought about what I could do with the time. I’ve always loved creative activities, and so decided to learn calligraphy and set a goal of (with the help of my friend Laura Footes) designing and writing the wedding invitations for my cousin and his fiancé’s wedding next summer. One of my best friends got married a few months ago and I was so honoured when she asked me to use my new skill to write out the name place settings for the wedding. I’m really pleased that I decided to start calligraphy because although fighting Cyril’ has meant big changes to my lifestyle and routine, it also means that I’ve learnt something new. It has given me a positive focus and challenge.

6. Raising money and awareness

One of the main things that has kept me feeling positive is my fundraising for the Royal Marsden and raising awareness of BRCA mutations and ovarian cancer. My diagnosis at 27 is rare, and so if I can help other young ladies to be aware of the symptoms of ovarian cancer by sharing my story, then I know I have done a good thing.  Fundraising also gives me a way to give something back to the amazing hospital that is saving my life, and the lives of so many others.

  1. Netflix and box sets

I think this one is pretty self-explanatory! However, I will say that I am not naturally somebody who can sit and watch hours of TV, but after being forced into trying some box sets I achieved a personal record of completing three series of Devious Maids in two weeks! I am waiting eagerly for series four to come out, but have lots of other box sets to keep me occupied in the meantime! Who would have thought that I would branch out from Neighbours, Home and Away and Eastenders!

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So those are a few of the things that have been helping me keep focused and positive. More recently, I have started to think about the future and the idea of getting back to the things that had to take a back seat in my life since June. I think this is because I am nearing the end of my chemo and the start of my maintenance treatment. When I think towards the future, I find myself feeling a lot of anxiety, uncertainly and fear. Thinking about what mindfulness has taught me, I’m trying to accept that these feelings about the future are ok, and whilst I cannot stop these, I don’t always have to ‘go with them’ when they appear. To help me with this, I’ve been trying to use the image of a London bus. I allow myself to notice and acknowledge the fears and worries, and then imagine putting them on the bus and watching it drive away. So although I know that these worries are there, and that they will come back round, I have the choice to not always get on the bus with them. This allows me to have space in my mind to think more about the positive things to come: finishing my masters, going back to teaching and continuing with raising awareness and fundraising.

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I would be lying if I said that this always works or that it’s easy to put into practice, but it’s another way that I can feel more in control of a very ‘out of my control’ situation. I also know that in time it will become easier and so I try not to put too much pressure on myself about the future. Instead, I try to keep myself in the present.

 

A tricky week

On Monday 19th September, I was back on the chemo ward for part two of cycle four. I went through all the regular checks, and this week my veins were well behaved for my wonderful nurse! However, my blood caused her a bit of trouble when she tried to do my routine blood tests. But the incredible nurses have lots of tricks up their sleeves to solve problems. Instead of trying to fill up each vial with blood, she attached a syringe to my cannula and took all of the blood she needed. She then put my blood in each vial. Although she got a cannula in on the first go, I will still consider putting the PICC line in the future, if my veins keeping playing up.

When the doctor came to see me, we spoke about how the week had been and how I was feeling. Unfortunately, I got some news that instantly shook me. On Monday 12th September, my CA 125 was taken and it came back at 333 (this is very high). The last time it had been taken was before my operation and it was at 16. This was a confusing result because three days prior to this I had a CT scan, which revealed no sign of cancer, but some fluid on the outer lining of my right lung. She explained to me that they were going to repeat my CA 125 and depending on this result they would possibly do another scan to see what was going on. She told me that later in the day the professor in charge of my chemo would come and see me to explain more. When he came to see me, he explained that they thought the CA 125 reading was high because of a plural effusion that I had developed after my operation. He explained to me that a build up of fluid that is not cancerous could cause a CA 125 reading to increase. He told me that we just had to wait for the new CA 125 reading the next day, and if it had decreased there would be no need for a repeat scan.

If I am being wholeheartedly honest, in a split second the mantra about accepting bumps along this road, that I have tried so hard to follow went out of the window. I was in complete disarray. All I could think of and say were negative things, and no matter what people said to me, I found it very hard to bring myself back to a clear state of mind. However, with the support of the medical team, my family, and my friends Chloe and Rosie, who visited the chemo ward during their lunch break, I managed to calm down and focus on having my chemo. On Tuesday 13th September, I got good news from the chemo ward! My CA 125 had gone down to 192, and the increase in this level was due to the plural effusion as suspected. There is no need to repeat my CT scan and my chemo is going ahead as planned. My CA 125 will be checked each week.

Time to get back to chemo. Once my bloods came back, my cooling cap was prepared and my chemo got underway. I had to stay two hours extra because I was low on magnesium and the doctor wanted to administer intravenous magnesium. I had my usual foot massage, and it was wonderful to spend time with my friends Chloe and Rosie, who as I said gave up their lunch breaks to be with me on the chemo ward. After a slightly longer session, it was time to head off home and put my feet up.

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As I mentioned at the start of this blog, the good news about the CA 125 level came on Tuesday 20th September, so I did find myself getting very anxious until the phone call came. Once I had heard the good news, I could breath a sigh of relief. By way of celebrating this good news, and given that I was feeling well, I decided to go out to a local restaurant with my dad for some lunch. This was a huge thing for me to do because I had never gone out the day after a chemo session, apart from once when I had to go back to hospital for a blood transfusion and a CT scan. Whilst we were out, we met my friend Rosie’s wonderful grandma (see the photo below), who is a super star at selling Finding Cyril bands!

Unfortunately, when we got home I started to get hot and cold and my temperature went up. This meant a visit to A and E because when you are on chemo you have to be checked if your temperature is 38°C or more. I am sure I am speaking for everybody when I say I hate going to A and E, and this just felt even worse after having such a wonderful morning. My dad and my amazing cousin David, who is like my big brother, came with me. My blood tests and X-Ray were normal, but the decision was made to treat it like an infection. Therefore, I was given intravenous paracetamol, intravenous antibiotics, fluids and then sent home with more antibiotics. We ended up being in A and E for seven hours because they would not let me home until my heart rate lowered. I am known to have a high heart rate, but for some reason it seems to go through the roof when I visit A and E! As you can see below I documented the A and E visit with a photo!

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This visit to A and E took me back to the 3rd June. On this day, I made my second visit to A and E where a CT scan revealed a concerning swelling on my right ovary. This memory came back to me because as was lying in the cubicle opposite the one that I was in on the 3rd June. As I was lying down being given fluids, I was looking at the other bed and recalling the anxiety, fear and pain I felt after hearing the CT scan result and waiting for my transfer to the Royal Marsden. Being opposite this bay (see the photo below) spurred me on to enquire about the amazing nurse who looked after me that day, and came with me when I was transferred to the Royal Marsden. It only took asking a few nurses to find her, and on Friday 23rd September I got to talk to her on the phone! There has not been a day when I have not thought about this nurse. She comforted me from the moment the scan result was revealed. She came with me in the cab to the Marsden and held my hand the whole way. I will be forever thankful to her, and she will always have a very special place in my heart because of the care and compassion that she showed me at a very difficult time.

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So this week has been a real challenge for me physically and emotionally. I had the worry about my tumour markers, a visit to A and E, I am a lot weaker from chemo, I am full of mixed emotions and I am still recovering from my operation. This has all contributed to my anxiety levels rising this week (I can sense it because my heart constantly feels like it is popping out of my chest!). To deal with this anxiety I have taken it very easy. I have had two amazing facials by my auntie Roz, and I have had a wonderful reflexology session at Chai Cancer Care. Messages of encouragement from friends and family have also boosted me (as they always do).  Below you can see some of the beautiful photos that my friend Anna sent me from Italy that instantly put a smile on my face, and a photo from cousin’s fiancé Gemma showing me how well she is doing with selling her Finding Cyril bands to help raise funds for the Royal Marsden! These things have helped but I have still found myself panicking when the thermometer goes in my ear because I worry that I will find myself back in A and E. However, the antibiotics seem to be kicking in!

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As I move into next week, I hope that I will have more ups than downs, but I need to keep reminding myself that these ups and downs are normal when fighting ‘Cyril,’ so if a low moment occurs I have to accept it, allow it to happen and then find ways to deal with it, just like I tried to do this week. I have to remember that ‘Difficult roads often lead to beautiful destinations.’

Everybody needs good neighbours…especially when recovering from surgery.

Being at home after surgery has had its ups and downs; both emotionally and physically, but I do believe that being in my own surroundings has pushed me forward in my recovery. The way that I’ve been trying to manage is by taking each day as it comes. I find it helpful to have routine. I’ve been keeping on top of my medication, trying to walk a little more each day, and doing my physiotherapy exercises. I have also started working with a physiotherapist from Chai Cancer Care at home, which has helped me become more confident and motivated with my daily exercises.

Eating has been a gradual improvement and I’m now able to manage more food and bigger portions again. I’ve been able to get back to my usual weird mix for breakfast: kiwis, eggs, bananas and pancakes. Diet is a really important focus for me because I want to be preparing my body for restarting chemotherapy.

I’ve tried to keep things as quiet and relaxed as possible at home – I’ve had lots of relaxation time and with the help of my auntie, two wonderful facials. My skin really needed this after a week in hospital!

 

The texts, emails and phone calls from family and friends have also helped to push me forward in my recovery. The encouragement I get from everyone reminds me that I am strong enough to deal with what I’ve been through, and what I’m still going through. And the support has come from people of all ages. This includes my three year old nephew (see the video below), and two of my young neighbours baking very tasty brownies for me!

I’ve also had some words of encouragement from some celebrities. For those who know me well, you will know that I have been an avid Neighbours and Home and Away fan for as long as I could turn the TV on. I will never miss an episode, especially now that I have quite a bit of time on my hands. I’ve even been known watch episodes on my phone when I can’t get to a TV. So you can imagine my excitement when I received signed cards and messages from some of the Neighbours cast, who had taken the time to read my blog, learn about my experience with cancer and what I am trying to do to raise awareness. It’s made my week and I’m fully intending to take them up on their offer to meet them all once I’m well enough to travel to Australia!

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Emotionally and physically I’ve been up and down, and I’d be lying if I said that ‘Cyril’ hasn’t tested me since being home; probably more than it ever has on this journey. I have had my moments where I’ve cried, sometimes not even knowing why, felt in pain, angry, sad and happy. However, I kept to the promise I made to myself; I look down at my scar and no matter the emotion, I’m spurred on because my scar reminds me that I’m surviving.

I can’t quite believe that time has come already but I am starting back on chemotherapy tomorrow. Do I feel ready to begin cycle 4? The answer is yes. Am I anxious? Yes. Tired? Double yes. I’m worried about how I will find having the chemo treatment and side effects now that I have gone through surgery and am still in recovery mode. But in the words of Franklin Roosevelt, ‘When you come to the end of your rope, tie a knot and hold on.’ So I’m going to tighten my grip and hold on tight, as I start the next phase of recovery.

On 10th September, I took my first proper trip out with my sister. There really was only one thing I wanted to do…get a manicure! I had my nails painted and I opted for a more personalised style than normal to match the #FindingCyril wristbands.

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These bands are a sign of support for the amazing work The Marsden does. They cost £2 each and proceeds go straight to the Royal Marsden. You can donate on the Just Giving Page or by texting FICY58 £2 to 70070. Please get in touch if you would like one.

Finding Cyril has so far raised £5,538.07 for The Royal Marsden which is just beyond amazing! I want to take this opportunity thank everybody who has donated. I find it hard to express in words just how much it means to me. The Marsden are providing life-saving and amazing treatment on a daily basis. Treatment which I’m still receiving and will be for quite some time. I’m determined to raise as much money as I can, and so the support that people have given, and continue to give, means just so very much. So thank you.

So it’s more resting and relaxing for me to prepare for chemo tomorrow. Which means back to my Monday routine of scalp cooling, card games and foot massages…

 

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