Tea, Cake and Catwalk

On 11th March 2017, I was honoured to take part in the Tea with Ovacome fashion show alongside nine other ladies who have had, or are living with, ovarian cancer. Tea with Ovacome is an annual afternoon tea and fashion show founded by Adele Sewell, who herself is an ovarian cancer survivor. The main of aim of the day is to raise much needed awareness about ovarian cancer, whilst also being an opportunity to share experiences and celebrate the lives of those who have been affected by the disease.The event has continued to grow over the seven years that it has been running; this year tickets sold out in under 12 hours!
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I had been unable to attend the pre-event photo shoot a few months prior to the event, so the first time I met Adele, the event team, and the models, was on the morning of the show. Initially, the idea of taking part in a fashion show and walking up and down a catwalk in a room of about 200 people after having gone through cancer treatment felt scary and exposing. But this could not be further from the reality. From the moment I arrived, I instantly felt at ease and knew that the day would be unforgettable. As I started to meet and talk with the other models, I was soon aware of the courage, strength and determination that surrounded me. I was able to speak with women who have also had BRCA related ovarian cancer and to hear about their experiences of living with the genetic mutation.

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The photos in the slideshow above are by Kate Pigden 

We started the day by rehearsing our catwalk routines, which was so helpful with managing my anxiety about walking up and down a catwalk in heels; those who know me know that co-ordination is not always my strong point! We then had afternoon tea together before heading back to the rooms to have our hair, make up and nails done. By the time 5pm came, we were ready to take to the catwalk. My heart was popping out my chest as I stood there waiting to go out for the first time. However, when the time came to step out, the bright lights, applause and smiling faces turned my nerves into pure excitement and confidence. My family was there for the event and walking out and seeing them at the ‘Finding Cyril’ table was such a wonderful feeling!

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The day was filled with so many emotions: excitement and laughter, but also sadness and reflection. We were able to remember and celebrate the lives of women who have been part of the Tea with Ovacome community but have since passed. It was a poignant reminder of the reason we were all there; to raise awareness, knowledge and understanding about the disease, as well as provide support for women and their loved ones. Ovarian cancer continues to be one of the cancers which is all too often diagnosed in the late stages because the symptoms can be missed or confused with bowel symptoms. Having events such as Tea with Ovacome help to raise awareness about the disease and symptoms. I don’t imagine that there was one person who left the tea without thinking about it, and hopefully all will go on to have conversations with others about it. At the end of the day, the more these conversations are had, the more that women can know what to look out for.

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The photos in the slideshow above were taken by Ming Yeung, Getty Images 

Adele and the Tea with Ovacome team are continuing to build on their success with Tea with Ovacome.  They have organised the “Touch of Teal” Glitter Gala on 9th September 2017. This is the first ever dinner dance that they have put on and all proceeds will be donated equally to the following charities: Ovacome, Ovarian Cancer Action, Penny Brohn UK, The Royal Marsden Hospital and Target Ovarian Cancer. Once again women who have had or have ovarian cancer will model and speak at the event. You can buy tickets for the gala by clicking on the link below. If you would like to apply to model or be a speaker, or know somebody who might be interested in this unique opportunity, please get in touch with Adele by emailing: info@teamwithovacome.org.

https://www.eventbrite.co.uk/e/the-touch-of-teal-glitter-gala-tickets-32678837282?aff=es2

Ovarian cancer has meant that certain aspects of my life have changed significantly. One of the main ones being my body. I look different; I have a scar down my tummy (which I’m proud of), I’ve put on weight (which I’m pleased about) and I’m now menopausal which brings me a whole host of physical symptoms on a daily basis. Going though cancer, and especially the side effects of chemotherapy and surgery, makes you feel different about your body. At times it felt like my body was not mine and was there only to fight cancer. I remember also feeling anger towards my body after I was diagnosed. I was angry at it for letting ‘Cyril’ in, but over time I started to realise that my body actually did a good thing letting me know ‘Cyril’ was there and getting me to the point I am at now. Being part of this whole experience: going shopping with the team to find outfits, having hair and make-up done and walking down the catwalk alongside the other women gave me back some self-confidence that I had lost on this journey. It allowed me to see my body as my own and not just as a thing to fight cancer with, and to celebrate how far it and I have come.

 

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The final photo in this slideshow was taken by Ming Yeung, Getty Images 

Make time for tea!

On Tuesday 28th February, I was very privileged to attend the Eve Appeal’s launch of their March 2017 campaign: ‘Make Time for Tea.’ It was held at the House of Commons and I went along with my dad for a very special afternoon tea.

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From the moment I walked into the room, I got a sense of how important this event was going to be. The room was filled with: ovarian cancer survivors, patients who are still undergoing treatment for ovarian cancer, families who have lost loved ones to the terrible disease, and MPs and celebrities who are in support the Eve Appeal and their efforts to raise awareness of, not just ovarian cancer, but all gynaecological cancers. The focus for this event was ovarian cancer because March is ovarian cancer awareness month.

Athena Laminios, Chief Executive of the Eve Appeal,was one of the first people to speak. Her talk focused on the importance of us all talking more about gynaecological cancers to raise awareness. We as women can often end up avoiding conversations about our bodies, and especially our vaginas, because we end up feeling embarrassed about it. Athena highlighted how we must all try to not shy away from talking about these issues just because it can sometimes feel uncomfortable. It highlighted for me just how important it is to allow these conversations to happen, not just between us, but also in our wider society.

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We were also honoured to hear from some inspiring women about their personal experiences of ovarian cancer. Alison, who is an incredibly special woman and a huge inspiration to me, spoke about raising awareness of BRCA mutations and ovarian cancer. She has been, and continues to be, there for me since my diagnosis, and was one of the first people I spoke to when I was diagnosed. She immediately understood what I was feeling without me even having to say much. It was humbling to hear her talk about her personal cancer journey and determination to raise awareness about this important topic. I am so thankful to have such support, guidance and love from Alison and her family.

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I spoke with other women like Alison who have lived with ovarian cancer. One woman I met told me how for many years, she lived in fear of cancer, but now over time, feels free from this fear. It was so reassuring to hear from her; like all of the women I have met, hearing about her experience gave me hope and encouragement.

I also met a number of celebrity supporters of the charity, including Dr Christian Spencer Jessen and Lesley Joseph, as well as a number of MPs. It felt so special to talk with these people about my personal journey as well as the wider issues relevant to ovarian cancer.

I wanted to write a bit more about what Athena mentioned in her talk; the importance of us talking about our bodies and gynaecological symptoms. I identified so much with this when think back to my own experience. Back in May 2016, I got terrible tummy cramps, which seemed strange to me because I had already had my period that month. I remember noticing other new symptoms after this and initially, the only reason I kept asking my GP about whether it was to do with my ovaries was because of where the pain was, not because I suspected it was cancer. Back then, I had no idea about the symptoms of ovarian cancer. However, as the symptoms and pain continued, and I started to search the internet, I began feeling more uneasy about what the health professionals were telling me and so I kept going back. This is one of the reasons I decided to start blogging; I truly believe that knowing the symptoms means that you can be more aware of when things don’t feel right in your body. If I have learnt anything from my experience of diagnosis, it is that you know your body the best. I also feel strongly about raising awareness of ovarian cancer amongst women of all ages. I stress ‘all ages’ because although rare, ovarian cancer can still occur in younger women, like it did with me.

So the take home message for me from the event was for us all to try and be more comfortable with talking about our bodies, our vaginas and gynaecological symptoms. If we can try to have these conversations more openly, then we can continue to make it normal for women too talk about when things don’t feel quite right and subsequently get things checked. One of the most terrifying facts about ovarian cancer is that it is often diagnosed in its latter stages, and usually once the disease has spread. The symptoms are often the same as conditions such as irritable bowel syndrome or pre-menstrual syndrome. You can read more about this on the Eve Appeal website.

In aid of ovarian cancer awareness month, the Eve Appeal is asking everyone, women and men, to sit down for tea and start having these vital conversations about ovarian cancer, whilst also raising money for the cause. Have a look at the link below for more information.

So put the kettle on, slice the cake and let’s start talking!

Links and info:

  • Oliver Bonas have teamed up with the Eve Appeal and for the next two years, will be supporting The Eve Appeal through the sale of a number of products. All their profit will go to the charity, including all the in store carrier bag sales. https://www.oliverbonas.com/about-us/charity

BRCAfest update!

On 9th April, BRCAfest is taking place in Mill Hill. As well as having our raffle, we are also going to be having an auction on the day.

We have wonderful auction prizes.

1) accommodation for one week in Quinta Do Largo in the Algarve

2) a signed goodie from Jessica Ennis

3) two signed framed framed football shirts. One by Gareth Bale and the other by Juan Mata.

To be in with a chance to win these incredible prizes buy your tickets for BRCAfest now! Use the link below to purchase your tickets.

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

Remember this event is going to spread vital awareness of BRCA mutations, hereditary cancers and the incredible work that the Royal Marsden does.

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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.

Happy birthday to me!

Today marks my 28th birthday and so it feels like an appropriate time to update Finding Cyril with a new blog. A lot has happened since I found that I was in remission on 16 November 2016. I have adjusted well to my three weekly Avastin treatments, I have started to go back to school, I feel able to go out and do more things, and as a result, have met some really lovely new people. It goes without saying that I have good and bad days. And then there are the days when I can experience what feels like every emotion under the sun in the space of a day. 

 It is hard to put into words what I am feeling on my birthday this year. It’s a real mix of emotions, thoughts and feelings. I thought I would try my hand at poetry as a way of expressing some of it. I’m no poet but here goes!

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The thing that comes to mind most of all today is how grateful I am to my team members who are helping me in my current boxing match with ‘Cyril’ (the match where the goal is to remain the champion). My team includes: my medical team, my Avastin treatment, my family and friends, my dog Oscar (concerning that I’ve just realised he has not been mentioned in this blog thus far), Chai Cancer Care and every person who has and continues to support Finding Cyril raise awareness and funds for the incredible Royal Marsden. Thank you all – you really have made this birthday one I’ll never forget. 

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Angels in comfortable shoes

I have spoken many times about the incredible medical team that looks after me. It consists of so many amazing people, but I wanted to write specifically about one group of people who are so integral in the supporting patients through their cancer journey: the nurses. As a patient, you end up meeting so many nurses: at chemotherapy, during inpatient admissions or at outpatient clinic appointments. Every nurse that I have met athe Royal Marsden has left a mark on me – and I don’t just mean at the site of my cannula! So to try and explain more, I’ve written about my experience of nurses from when I was diagnosed, throughout my chemotherapy and surgery and as I continue on with my treatment. 

 Diagnosis

On the 3rd June 2016, I entered the Royal Marsden for the first time clutching the hand of an A&E nurse who had decided to travel with me from Barnet hospital. She had made the journey with me because she saw how distressed and overwhelmed I was. When we arrived, I was met by an extremely caring nurse who did everything she could to make me feel calm whist I waited for the consultant to arrive. I always remembered her and how much she tried to put me at ease. Months later, on the 7th November, I was having my final chemotherapy session which had overrun as I needed a blood transfusion. The chemo ward was closing and so I was moved to a general inpatient ward to finish treatment. Unbeknown to her or me, she was my nurse that evening! It was such an emotional reunionI was able to update her on how my treatment had gone and tell her that I had succeeded in kicking ‘Cyril’ out of the boxing ring! This nurse put my first Marsden cannula in, and it seemed quite fitting that she took the cannula out from my final chemo session (shown in the photo below).

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 Chemotherapy and day treatment unit nurses 

I had eighteen sessions of chemotherapy and it did not take long for me to get to know all the amazing nurses on the chemo ward. They are always smiling, eager to know all about the things that you have been doing between sessions and always there to comfort you. They make you feel like a person and not just a cancer patient. The care they give you is nothing short of incredible.  For me, I always remember the small things: how they would take time to prep my hair for the scalp cooling, explain complicated medical things in a way that makes sense (even after I had asked them the same question numerous times!), make sure you are comfortable, warm enough, cool enough, hydrated and not hungry. They’re also always ready to have a laugh with you. I can think back to so many funny times when I had my pre-meds which would make me feel slightly drunk or make me wriggle in the chair because one of the pre-meds causes an itchy bottom! I still have my treatment every three weeks on the ward so still get to be looked after by this wonderful nursing team.

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 Inpatient ward nurses 

I also met many different nurses when I was admitted to hospital for my surgery.  I clearly remember the nurse who looked after me in the surgical admissions unit. He was amazing at keeping me calm when I was possibly the least calm I’ve ever felt. I obviously never met the nurses who assisted my operation, but I know from reading and talking with my consultant what an important role they have in theatre. Throughout my stay in Critical Care I was cared for so well. I remember waking up on the unit after surgery and knowing that I would be ok when I heard my nurse’s calming voice. Every nurse I met in this unit made me feel incredibly safe in the initial post operation period, which can seem really frightening at times. Again it was the small things: helping me to keep clean, doing my hair (without a hairband…one nurse managed to fashion a hairband out of the top of a surgical glove!), making sure I was comfortable with pillows, helping me to slowly start drinking fluids and just holding my hand and encouraging me when I was in pain.

 When I moved of the unit on the general ward the nurses were also brilliant. Each stage of your recovery requires something different and they seem to know just what you need to get you through itThe ward nurses were reassuring but also very encouraging; if they thought I could do something on my own they would help me to do it rather than do it for me. They helped me have a shower for the first time and were so encouraging with my rehab. After surgery one of the goals on the ward is to be able to get your catheter removed as soon as possible and use the bathroom instead. This obviously involves walking, which after surgery, is much harder than you can ever imagine. My nurse would keep encouraging me to walk just that little bit more each day because she knew I could get to the point of having it removed…which felt like such a big milestone. I also was so grateful to be able to talk to the nurses – they have so much experience that I always felt like they understood what it was like when I feeling low or having a bad day.

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Clinical Nurse Specialist 

 At the Royal Marsden you are also assigned a clinical specialist nurse who is there to support you throughout your journey. I met my nurse on my first night in the Royal Marsden back in June, and I know that she is always there when I need her. After my operation it was so helpful to talk through all of the possible symptoms of menopause with her, some of which I had never even considered before then. After having this conversation, I remember feeling a lot calmer about menopause because I knew what to expect. It’s also reassuring to know that there is someone on the end of a phone or email who you can contact with a question or worry. 

 So there’s a brief look at how the nurses at the Royal Marsden who have been, and continue to be, such an important part of my journey. They hold a very special place in my heart. As a patient, I’ve found that you never forget what the nurses say, what they do and how they make you feel. I would like to take this opportunity to thank, not just nurses that I have come in contact with, but to nurses in general. 

You may have started reading this blog and wondered about the title. When I was reading up on the role of nurses I came across the idea and it just seemed to completely fit with my experience of them. ‘Angel’ is one of the best ways to describe nurses. And the comfortable shoes…well if you’ve got to the end of this you will hopefully understand just how much nurses do in a day – even angels would get sore feet.

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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 menopause!


Laura 1 – Cyril 0

Back in June I entered into the ring to start my boxing match with ‘Cyril.’ There have been rounds that I’ve found simple to win, others that have felt like a bit of an effort, and those that have been extremely challenging. And then there were the ones that felt just completely impossible to win. The final round of the match was on Monday when I had my repeat CT scan. Shopping and lunch with my aunt followed my scan!

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And the winner was announced on Wednesday, when I met with the professor in charge of my chemo for the scan results. He confirmed that the scan showed no evidence of ‘Cyril,’ which means that I am now in remission!! That’s the word I’ve been waiting for and it felt just as good to hear as I thought it would. Wining this match doesn’t mean the end of my treatment, but it marks a huge milestone for me, and one that I’m so proud and grateful to have got to. 

 For the next year, I will be back at the Marsden every three weeks for my Avastin – the maintenance IV drug I’ll be on. I had my first one on Wednesday after my scan results and my veins and blood behaved themselves so treatment went smoothly. Once again, I had my usual dose of IV magnesium for 3 1/2 hours, but the time past very quickly because I had my trusty colouring book and was chatting away with the wonderful nurses and doctors on the ward. I finished this long day at the Marsden with my third session of acupuncture. This is helping to reduce the intensity of the hot flushes and night sweats that I get due to the menopause. Before heading back home on the train, I had a celebratory burger with my dad and sister. I am so proud of myself, as eating in a restaurant is no longer as anxiety inducing as it was a few months ago, and I can enjoy doing this a lot more now. 

Last week, I shared some of the things on my ‘Normal List’. I wrote it to help me deal with the fact my treatment is now every three weeks, to stop me worrying about what my tumor markers are doing and my future health. It was also to help me get back into all the important non-cancer things in my life. They may seem like small things, but they’re things I’ve not been able to do until now. The list seems to be working well. So far I’ve ticked off:

• going on the train on my own 
• going up to the Marsden for an appointment on my own
•  going out for dinner 
• out for lunch with friends 
• going shopping! (supermarket and clothes shop) 
• cooking a meal
• buying an outfit for my friend’s wedding next year 

 

I have also added some new things to the list this week. I’m going to visit the school I work at on Monday 21st November and I’m also planning a trip to a Christmas market. I find that when I’m doing something from my list, I’m focused on the activity,  and all of things that worry me seem to temporarily fade away. I have become eager to tick things off my list, and take a selfie of myself or a photo so I’ve got a record of what I have done. I’ve included some of the selfies and photos I have taken so far…

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The list is really helping, but I know from my experience so far, feelings come and go and you always need to keep mindful of what you might need or what might be helpful at different points on this journey. This week I was reminded about the importance of asking for help if I am struggling to cope.

Back to the boxing match and my win! There are so many people who have helped me to win this fight: my medical team, my family, my friends, Chai Cancer Care and every single person who has supported, and continues to support, Finding Cyril. And possibly most important of all my body has helped me. I am so thankful to my body because it did an incredible job at letting me know that ‘Cyril’ was there, and then in helping me fight it. 

So now I have started my next match, but this time with the experience and knowledge from having already got through the first one…

Match two statistics 

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 Aim: To keep ‘Cyril’ out of the ring so that I can hold my position as the champion

 Player: Laura and her body

 Team members: Avastin, Royal Marsden medical team, family, friends, Chai Cancer Care, my Finding Cyril blog and my ‘Normal List’

The challenge of this match is time. It’s going to be a very long one and I have no doubt that there will be bumps along the way, and times when I feel my position as champion is being challenged. But I won the belt in the first match, and I will also win it this time round. I wear my belt from the first match every day. It’s my scar and it is proof that I am stronger than ‘Cyril.’ The belt from the second match will be the joy of achieving all of the things that I want to, whilst also dealing with any obstacles that the match may throw my way. 

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As my oldest sister told me on the 9th June when I was diagnosed, “Cyril messed with the wrong b****!”

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