Oscar

A few days ago, my family and I lost our gorgeous Basset Hound called Oscar. He was reaching an impressive 15 years old. Oscar came into our family at a time when we all needed something to smile about. My parents were getting divorced and everybody was on an emotional rollercoaster. It was an incredibly tough time for everyone in their own way, but Oscar’s arrival was the thing that seemed to make things that little bit lighter for everyone. Especially for my dad; Oscar was like his right-hand man. You always hear that dogs have one master and looking back, this was exactly the case with Oscar and my dad. You also always hear that pets are like a great medicine and Oscar has certainly been that to me over the past year.

From the very beginning Oscar was a determined little thing who always knew what he wanted. Oscar actually chose his own name. We wrote a few names on pieces of paper, put them down on the floor and he walked towards ‘Oscar’ so it was decided. His defining feature was always his ears but he had to learn to grow into them which took a little time. He used to trip up on them and get upset when they would go in his food bowl…at times he wouldn’t eat unless dad held his ears up or gathered them on top of his head with a scrunchie!

Oscar always used to make us laugh especially around food or anything that might resemble food. I can’t begin to count the number of times he would dart off into the garden with clothes or shoes or attempt to eat slippers. He was obsessed with a pair of Winnie the Pooh slipper’s I once had. Suffice to say, they didn’t last long! One of my favourite memories of Oscar was when he sat quietly in the kitchen watching my sister make a salt-beef sandwich and the second she turned her back he leaped to the table, grabbed the sandwich and darted outside to eat it! He once did the same with a challah that we were about to bless at the Friday night table! I’m sure that Oscar got up to all of these tricks because he knew that his family needed laughter and happiness when he arrived and he was the one to bring it.

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Over the years, Oscar also developed some more quirky traits. He would sit and watch at the window when my dad would go out and wait until he came back before he moved. He was also absolutely terrified of the dustpan and brush! I used love walking Oscar most days until one day he just decided that he wouldn’t go not go with me on my own. And he stuck with this for a very long time! For those of you who knew Oscar or any basset, when they don’t want to walk, there is NO chance that you can get them to!

We later found out that his collar had caused a painful rash under his neck that would get worse when on the lead and we think that he had probably associated it with me (the person who would walk him lots). From then on, he would only walk on his own with my dad, otherwise you had to be in a pair for him to agree to go. If you wanted to walk him on your own, you had to wait the right amount of time (usually at least an hour) after my dad left the house before taking him. We know these details because we spent a lot of time testing out these various hypotheses! And if you managed to get him out on your own and to the end of the road but at the time my dad happened to come back, Oscar would go no further. I thought I would share the video below to show Oscar’s walking antics!

I used to love my walks with just Oscar. I would chat to him along the way (as I often do with anyone!) so if anybody ever noticed a young lady walking through Mill Hill and talking to her dog, it was probably me!

About two years ago, Oscar had high risk emergency surgery at what was considered an old age for a dog. His stomach and spleen had twisted and we were told that had we not got him to the vet in that hour, he would have died from it. He made it through the surgery and made a great recovery because he was a fighter. Medivet even made him their ‘Braveheart of the Month’ because of how amazing he did.

More recently in his old age Oscar developed lots of different health problems, especially with his joints but with each bump in the road he fought through and kept going. Since having cancer, I would joke that Oscar and I were very similar because we both had bad joint pain and difficulty sleeping!

Around the time I was diagnosed last year Oscar seemed to be doing ok, regardless of all the little issues he had. I like to think that he knew I was sick and needed him around. Having spent so much of the last year at home I got to be with him most days. He was less able to go for walks because of his health and so we kept each other company at home. Whenever he saw me sitting outside or resting on the sofa, he would come and sit by me. When I looked into his gorgeous droopy eyes it was as if he was reassuring me and encouraging me to keep fighting, just like he was doing. Even in his old age, he continued to bring laughter into our house because it’s like he knew that laughter was the best medicine.

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Even a few months ago when Oscar became quite poorly and we were concerned that we may have to say goodbye to him, he once again he fought back. I like to think that this was because he wasn’t yet confident enough that I was in a place that he would be comfortable to leave me. So instead he waited until I was over halfway through my Avastin treatment, had dealt with a couple of bumps in the road along my cancer journey and become a lot stronger physically and mentally before he chose to leave us.

Last week, we had a family wedding outside of London and so booked him into the kennels for a few days. Each time we called to check up on him, the staff let us know that he was doing great, he was really happy and playing with all the other dogs. I remember hearing this while I had my Avastin last week and it made me smile because for a while now, Oscar wasn’t able to go out for walks so rarely saw other dogs. On Thursday night while we were at the wedding, the kennel staff rushed him to the vet as he had started to struggle to breath. He’d had a heart attack and deteriorated really quickly. It meant that the vet had to make the decision to put him down because there was a concern that he would have another attack in the next few hours. This is the part that has been most devastating for me because we were not able to be there to hold and comfort him.

Over recent months, I’ve tried to mentally start to prepare myself for the fact that Oscar was nearing the end of his life. At times, I’ve found it really quite hard because since my cancer journey started I have been much more aware of life, loss and mortality and so the thought of not having Oscar has been really difficult. I guess I always took some comfort from the thought that however it happened, I would get to be by his side when he finally passed.

I’ve been thinking a lot over the past few days about how it happened. Those of us that knew and loved him have been talking a lot about him and his loving and very stubborn character. I can’t help but think that perhaps he would have never wanted us to see him go which is why it happened when it did. I’m grateful to the vet who looked after Oscar and made sure he wasn’t in pain, and also to the staff at the kennels who looked after him for a couple days before he passed away because it was as though he had a little holiday with other dogs before he died.

To my gorgeous Oscar, thank you for bouncing into our lives all those years ago. When my dad picked you out from all the other puppies he said it was because he really felt that you were the one for us. You must have also felt that we were the ones for you because you made it clear to him that you wanted to be picked! You brought light into our lives just when we really needed it. You went through the hardest part of my life with me last year. I’m so thankful that you were by my side through treatment, I am and grateful that you chose to let go only once I was in a better place. Over the last year, you have comforted me, made me laugh, made me smile and pushed me forward at times when it all felt too much. Together we battled our various health problems!

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Thank you for being part of my team in my fight against ‘Cyril.’ You are still very much part of my team but just in different way. Your role is now to help me laugh and smile when I think of our 15 years together, and to watch over me as I continue on my journey while you have a much-needed rest. I promise you that I will keep going and keep doing well because I know that you will be looking down on me to check that I am doing just that. When there are bumps in the road I’ll fight through them just like you did.

I love you Oscar. You will always be in my heart.

Navigating a booby trap

This time last year I was well into my weekly chemo cycle and was preparing for surgery. One year on and as the school year comes to an end, I have found myself reflecting on just how much has changed this past year and how far I have come.

After the end of my weekly treatment back in January I was able to return to work for one morning a week and over time, I have gradually built this up to teaching French three days a week. I can sometimes find myself feeling a range of emotions about this. I am overjoyed and excited about being back in the classroom but also mindful of those who have gone through the same journey as me but didn’t get this chance. In some ways, it makes me more determined to give teaching my all because I’m now more aware of how special life really is.

I’m also able to do lots more social things now compared with a year ago. I have days where I’m too exhausted to do much other than move from my bed to the sofa and days when my ‘old lady’ bones and joints (a consequence of the treatment and menopause) make me feel too uncomfortable to do anything, but these are sandwiched between good days where I can be out for ages.

As I continue with taking back control of my life after cancer, there is always a part of my mind that is focused on the fact that I still have a long way to go. I’m still on treatment and even once this ends I will still need to have regular check-ups. I will also need to continue with regular breast screening. My three monthly ‘boob MOT’ has now become a very routine part of life. They had their last MOT a week ago and they passed! Their only crime is getting bigger courtesy of menopause but I’m ok living with that! It’s always a lovely feeling of relief after the check-up and the first thing I often want to celebrate with is food…hence the chips!

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Whilst I feel overjoyed every three months when I have a clear breast scan, the fear about breast cancer lingers in the background. As a BRCA 1 patient, I am well aware of the risk of breast cancer – ironically that has always statistically been the bigger concern but it turned out that my body didn’t follow statistics. My plan is that when I am further into remission and able to, I will undergo preventive breast surgery but often the biggest fear for me is that ‘Cyril’ could appear in my breasts before I’m able to take control of my breast cancer risk. Really this is all about the fear of the unknown.

Living with the worry that my breasts could do what my ovaries did is sometimes really hard to handle. As I get more familiar with my three monthly breast checks, I seem to be doing a little better with managing the fear that the checks bring. My most recent scan was brought forwards a few weeks because I could feel a lump in my breast. However, rather than spend the week leading up to the scan in a panic, I was able to rationally think this through and remind myself that the lump I was feeling was likely to be a lump that had actually already been found before, had been checked out and was nothing. Previously, I wouldn’t have been able to keep myself that calm under those sort of circumstances.

When I found out about BRCA 1 back in 2015 I was so sure that I would just keep up with surveillance of my breasts and the idea of preventative surgery so early on in life was not really on my radar. Fast forward one year having gone through ovarian cancer, my perspective has completely shifted. I know much more about my body, about my genetics and about cancer. For me, the idea of being able to have some control over this is so important to me. If I’m being totally honest, I don’t have the same feelings towards my breasts as I once did. I don’t actually like my breasts and some days I hate them because I know what they could do to me. I’ve lost any sense of identity to them. To me my breasts are just ‘things’ on my body and not a sign of my femininity.

It might sound strange but I’m not scared for the day to come when I can have my surgery. I’m actually excited. I can’t change my genes and I can’t change the past. I am a BRCA 1 mutation carrier and a stage 3 ovarian cancer survivor but I can make choices about my future. When the time is right, my boobs are going and will be replaced with DIY boobs and I already know that I will love them because of what they will represent and because they will no longer be a risk to my health.

Knowing that I still have a long way to go can be very hard to deal with. For me, having the support of those who are further along in their cancer journey is a huge support and comfort. It reminds me that this road which can seem very windy and never ending is not always as scary as I think it is. One of the best examples of this for me is my wonderful boyfriend who himself recently reached the amazing milestone of five years cancer free. It means that he is one of the people who best understands my experience and I’m so very grateful for that.

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So although I have a way to go before I can remove my breasts, I have to have faith in my body and believe that I will get there and be able to make this choice. But until then, I guess I have lots of time to give to planning a BIG ‘farewell boobies’ party!

 

 

 

 

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:

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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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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

Letters to my future self

On Monday 31st October, I was back on the chemo ward for session two of cycle 6.  Everything went to plan, and as is becoming routine now, I  needed IV magnesium.  I was lucky to have a lot of company this week, with my friends Rosie, Chloe and Sophie, who all gave up their lunch breaks to visit me on the ward. They kept me smiling and laughing the whole time. It reminded me just how lucky I am because I have the most amazing friends by my side. John Milton Hay, an American statesman and official, once said, ‘Friends are the sunshine of life,’ and these words ring true to me when I think about all of my incredible friends.

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I will be back at the Marsden this week for my ‘Look Good Feel Better’ session (check last week’s blog for more information on this). I’m also going to need another blood test this week to double check my haemoglobin level, which is dropping. So it might mean another blood transfusion. It’s strange to think back to how I felt when I was told I needed my first transfusion, as these have become such a routine part of my treatment now, that I don’t worry in the slightest!

As I might be having another blood transfusion, I wanted to use this an opportunity to remind everybody about an amazing charity called the ‘Joely Bear Appeal.’ They organise and run blood drives in North London. On 27th November, they will be running two drives: one at Edgware Community Hospital (8:20am – 16:30pm) and the other at Borehamwood & Elstree Synagogue (9:15am – 12:15am & 14:00pm – 16:30pm). Check out http://www.joelybear.org.uk/2016_11_Mitzvah_Day.html for further information.

As I have mentioned previously, I have started to become more anxious and worried about the future, and what might happen in terms of my health. I know that part of this is because my weekly chemo is coming to an end, and I’ll now be moving to a maintenance treatment that will happen every three weeks. The thought of not being at the hospital each week feels scary because it has become like a safety blanket for me. This sense of security is a testament to everybody there who is looking after me and helping me to get better.

I know that I’m going to find it hard to adjust to not getting my tumour markers results weekly. Getting these always and makes me feel reassured that the treatment is working. I know that I will have moments between my three weekly sessions where I wonder if everything it still going to plan. It’s a worry that I’m sure everyone who is fighting ‘Cyril’ feels when their treatment pattern changes. I am always reminded that my medical team at the Marsden is always there for me, and that if I ever have a worry, concern or a problem all I have to do is ask. They want to support you in getting back to your regular routines, being safe in the knowledge that they aren’t going anywhere.

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I also know that I have to find ways to cope with the thoughts and worries that I am having now, and which I know that I’ll continue to have throughout my maintenance treatment, and beyond. It is a case of trial and error to find the things that work. Some things that I have tried haven’t worked as well as I’d hoped. For example, allowing myself to notice when I’m having a worrying thought, to acknowledge it and then and visualize it going away. Although this mindfulness technique is helpful, it’s something that I do find challenging, because I find it really hard to ‘let go’ of the thoughts. However, for me, a better way of being able to ‘let go’ of them seems to be through writing. Starting to write when I was diagnosed with ‘Cyril’ helped me to deal with the shock of the diagnosis and the treatment I needed to have. I don’t think that I realised just how helpful writing could be. It has allowed me to clear my head when it sometimes feels like it is going to explode with thoughts or worries.

You may be wondering about the title of this blog… After my surgery, my sister’s friend got me a beautiful book. The book has letters that you write to your future self, seal up and open whenever you want in the future. It now seems like a perfect time to start using it and something I feel will be helpful, both now and in the future. Writing about my goals, hopes, fears and worries in these letters allows me to express what I’m thinking now. Opening them in the future will allow me to look back on this journey at a time when I’m in a different place; psychologically and emotionally. Like I said already, it is going to be trial and error in terms of finding things that help me cope with my worries about the future and the uncertainties about my health. I know that the things that help me might change at different points depending on what I’m going through.

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In life, we all have to learn to deal with uncertainty at different points. I think the author Jaeda DeWalt describes this perfectly:

“Learning to navigate the unpredictable terrain of life is an essential skill to develop. We can’t live a happy life if we are unwilling to pave the path that will lead to our personal fulfilment and destiny. Learning to sit comfortably in the seat of uncertainty is challenging, but equally rewarding, because discovery is what waits just underneath the surface of that uncertainty and that gives us the chance to become fearless explorers, of our own lives.”

In my life there have been numerous times when I have sat in that ‘seat of uncertainty,’ and coming through those experiences was indeed rewarding. The greatest uncertainty that I have ever encountered was being told that I carry the BRCA 1 mutation and then being diagnosed with ‘Cyril’. In this period of my life ‘learning to sit comfortably in the seat of uncertainty’ is, as DeWalt says, and continues to be, challenging. I know that it will continue to challenge me as my treatment routine becomes less and I get back into the other aspects of my life. It will mean that I need to keep in mind the things that I find help me to cope and also find new coping strategies, so that I can enjoy getting back to some great opportunities. I have a wonderful job to get back to, a Masters degree to complete, which will be followed by a third graduation ceremony (the satisfaction of that being that I will be the sibling to don our father’s wall with three graduation photos!), as well as new opportunities in life that I don’t even know of yet.

So whilst I worry about chemo ending, treatment only every three weeks, and my future health, I must keep reminding myself that there are so many good things to come… And that’s why I think it’s a good time to start writing these letters to my future self, and see if this is an effective coping mechanism to help me to deal with the uncertainties that I am facing.

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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.

 

So I’ve had my surgery…

IMG_1984On Wednesday 24th August, I woke up a lot earlier than usual because I was due at the Surgical Admissions Unit at the Royal Marsden at 7am. It was the day I had been nervously waiting for; my surgery day. I was feeling anxious, frightened and confused, but I knew that the surgery was the next important step in my journey, and the only way to say goodbye to ‘Cyril. 

Despite my fears, I knew that my chemo had prepped my body really well for this day. Also, it was comforting to hear that the dietician felt that I was going into my operation well nourished, which was not only important for my body during the operation, but also for my recovery. Since diagnosis, one of the main ways that I have been looking after myself is through food. I have made sure that I eat all the right things to keep my weight up. I’ll give you an example – my daily breakfast has consisted of three boiled eggs, two kiwis, a banana and some mango. It has sometimes felt like a huge challenge, but has meant that my body has been getting exactly what it needs. I don’t eat meat so eggs are a good source of protein for me. My dietitian told me that there is no problem with having more than two eggs a day, and she also taught me that eating kiwis with eggs helps my body to take in more protein from the eggs. It’s no secret that I cannot cook, and that I’m rarely allowed anywhere near a kitchen, but I guess since being diagnosed I can now offer people healthy eating tips!

 Once admitted to the surgical unit, my consultant and his team came to see me. The plan was to go down to theatre for about midday. I then met the anesthetist. AI mentioned in my previous blog, one of my biggest worries was general anaesthetic, because I’d not had one since I was a child. I had this fear of waking up mid operation. My anesthetist was incredible, and when I met him, I instantly felt less worried about this. He told me that he knew about my website and had been reading my blog as a way to get to know me. So he already knew about my worries and was able to reassure me so much – I cannot thank him enough for this. 

IMG_2030At about 10am, the nurse on the ward came to tell me to stop drinking water and to get changed into my gown. I had a lorazepam tablet, which helps with reducing anxiety, and got changed into my very fashionable surgery outfit, hat and (very hard to get on) socks. It turned out there was little time to wait, because not long after, I was told by my nurse that the team were ready for me earlier than planned. I had enough time to get my sister to help me with my plan to write a message for the surgical team across my stomach with my eyeliner… It only seemed right to bid farewell to ‘Cyril’ in French because of my love of the language! I hugged my dad and everyone else, and was then taken down to theatre. Because I’d taken a lorazepam, I wasn’t allowed to walk down, so had to be wheeled down in the bed. This made getting down to theatre less frightening. My sister, auntie and boyfriend came down with me and said goodbye at the theatre doors. After more hugs, I was wheeled into a small room that led onto the theatre. Soon my anesthetist came in and was just really calming. He asked where I’d like to go holiday. My response was the Peloponnese in Greece because that’s where Jonny and I were meant to go this summer. He then started to do something with the equipment and all I remember is that I asked him whether it was going in, and hearing him say, “Yes.” At this point, my job was over and would start again in recovery. 

The operation took about seven hours. Some of my family stayed near to the hospital for the whole day. My sister, Davina, kept a diary for me of their day waiting because one of the things I found hard to get my head around was the idea of loosing a whole day and having no idea about what was happening. It was really helpful to read it after so I knew what had been going while I was dreaming about the Peloponnese!

Once I was out of surgery, my consultant met with my family to update them and let them know that surgery had gone really well. My dad and aunt were able to see me briefly in Critical Care. I was sedated and intubated at this point so I have no memory of this. However, I do know what I looked liked, because before surgery I made my dad promise to take a photo! 

Fast forward to Thursday 25th August – I could not tell you what time. The first thing I remember was opening my eyes and it being really dark. I had no idea where I was or why I couldn’t talk. I heard a very sweet and calming voice explaining that she was my nurse and that I was in Critical Care. She told me to stay calm and that the tube in my mouth would come out when the doctor arrived. She also told me that my dad had telephoned and we would call back soon so that I could say hello to him. Before I knew it, the tube was out, I was put on oxygen, the lights had come up slightly, my nurse held the phone to my ear, and I heard my dad’s voice. It was at this point that I remembered that I’d had the surgeryMy nurse gave me a bed bath using wipes, changed by gown and helped me to brush my teeth. I was becoming a bit more alert and my consultant and his team came round to tell me that everything had gone well and that they would be back later on once I was more settled to explain things in more detail. 

IMG_2208My boyfriend Jonny and my sister visited that morning – it was wonderful to see familiar faces. We spoke for a little while and then I started to feel very sleepy. When I woke up I had a new nurse looking after me. She explained that the physiotherapist would be coming to see me. She combed my hair and fashioned a hair tie out of a hospital glove (that’s right, a glove!), which made me feel much better and dealt with the interesting bed hair situation! 

The physiotherapist explained the goal for that day was to sit at the end of the bed and do exercises to move my legs. I thought that there was no way that I would be able to do this so quickly but was proved wrong! With her help, I managed to roll over and lift myself up so that I was sitting on the side of the bed and was able to move my legs. My sister was able to stay with me for this, which was great because knowing she was there spurred me on. It was also the first time that I could see around the bed and look at all the machines and drips I was attached to. After a few exercises, I started to feel nauseous so with a lot of help and a very useful sliding sheet, I was put back into a lying position and had another much needed sleep.

Later on, more family visited but only for short periods and two at a time. I was still quite dazed but it was wonderful to see more familiar faces. Just knowing that they were there comforted me and gave me strength

My consultant and his team came back in the afternoon and I was more alert to hear about the operation. They explained that they took out all signs of visible disease; lots of which was ‘burnt out’ disease because the chemo had worked so well. They also mentioned the message on my tummy and how much they liked it! 

Critical Care have specific visiting hours, so by the end of the day my family had left, but my dad stayed with me until 8pm. He held my hand, spoke to me and encouraged me. He helped to get me settled for the night and make sure I had earphones in so I could watch some of Eastenders on the TV. I’m not sure that I really paid much attention but it was a nice distraction because Critical Care can be a noisy place. I found it hard to sleep that night because of the pain but the team there are amazing. They just seem to know how to make you comfortable, both mentally and physically, and I did manage to drift off at some point. I also had a patient controlled analgesia button (PCA), which meant that I could respond really quickly to the pain that I was feeling. 

On Friday 26th August, I woke up feeling a little more comfortable. Up until this point I had only been allowed water, but it was a special morning because I was allowed apple juice! The first sip was just incredible. It may sound like a very small thing to be excited over, but recovery from surgery is like taking lots of small steps and when you’re doing it, each one feels like a massive achievement. My consultant came round and examined me. He was able to hear small bowel movements so told me I could start to try eating soft foods, if I felt that I could.  

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It was soon time for my second physiotherapy session, and this time the plan was to walk! I doubted myself again, but I had my dad, sister, nurse and physiotherapist spurring me on. Despite being attached to several things, I managed to walk in the corridor for a few minutes and then out onto the veranda behind my bed. Breathing in the fresh air was amazing, but all the exercise was overwhelming and exhausting. When I went back to bed I fell into a deep sleep for two hours. I remember thinking, ‘How have I just been walking one and half days after major surgery?’ Looking back I know the answer. It was down to my determination (which I didn’t feel that I had at the time), my family supporting me, and also the reassurance and encouragement from the physiotherapist and my nurse, whom I had complete trust in. 

That afternoon I woke up to more family visiting: my sister Tara, brother in law Chris, and cousin David. For me, seeing the faces of everyone encouraged me to stay motivated and move forward with recovery. It also was a really good distraction. That day I attempted some food. My sister fed me some tomato soup and then a little bit of ice cream. Again another small step, but a great feeling to be able to do it! 

I had a chest X-ray in the day, which had showed a small pocket of air (pneumothorax) on my right lung, which I learnt can happen after surgery. It was partly why I was finding it quite hard to breathe, but the team felt confident that this would resolve on its own, so it was agreed that I was ready to be discharged from Critical Care and transferred to the ward. So I was off into the hands of another wonderful set of nurses. My consultant came to check up on me that evening and it was decided that I would have a blood transfusion overnight as my iron was low. One of the main things that made me feel safe in hospital is the close monitoring and amazing speed at which issues are investigated and plans put in place.

IMG_2040On Saturday 27th August, I woke feeling as though I had lots more energy – which was thanks to the transfusion. I still had very little appetite and my tummy was quite bloated because my bowels had not started working again. This is a very common effect of anesthetic. It was great to have visitors that day, but I also needed lots of rest and had to save my energy for my walking. My wonderful nurse got me up and walking around the corridors of the ward along with my myriad of medical attachments!

Sunday 28th August was another step forward because I had my catheter and central line taken out. Having the catheter out meant that every time I needed the toilet I had to (with assistance) get up and walk. This was a good thing because it meant more exercise, which is so important after surgery. Although I felt quite good in the morning, one of the things I’ve learnt about recovery is that things change very quickly, and by mid-morning I started to feel sick. I was vomiting and had developed a temperature. My first instinct was to view this as a setback, and when you’re already feeling weak and tired it’s sometimes really hard to feel motivated. However, ‘a setback is a chance for a comeback,’ so with this is mind, when the physiotherapist arrived and asked if I still felt up to walking, I didn’t think twice. 

I felt awful for the whole of that day, but I tried to remain as calm as I could, and tried to remember that on the days when I didn’t feel well, my body was continuing its boxing match against ‘Cyril,’ and perhaps this bit was just a slightly tougher round. 

My consultant made some changes to my medications that day. He stopped the pain control buttongave me a drip to replenish my electrolytes, introduced new pain medication and also administered some medication to help get my bowels moving. Also, having my aunt’s massages again was such a help with trying to rest that day. By that evening, my bowels started to kick back into action, and the result was a lot of exercise in going to and from the toilet! 

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On Monday 30th August, I woke up feeling as though I had less energy, but my stomach felt so much better. My consultant came to see me and was so impressed with the good results overnight. I thought I was hearing things when he asked me how I felt about going home the following day! I was so shocked because the initial plan was to be in hospital recovering for up to three weeks. However, things just seemed to progress quicker than anybody, (including my medical team), expected and he explained that one of their aims is to get people home to recover as quickly as they can because there’s a higher risk of infection in hospital. I felt anxious at the thought of being away from the doctors and nurses who were making me feel so safe, but also so excited thinking about being back in my own home. I spent this last day in hospital resting and also took my first proper walk outside with my dad and brother, Josh. It was so wonderful to have a change of scenery from the hospital room and breathe in the fresh air! 

On Tuesday 31st August, I had another chest X-ray that showed that the pocket of air on my lung was improving. That morning my sister visited and helped me get ready to go home. This felt important for me because I wanted to leave feeling as good as I could. She helped me to wash my hair, get dressed for the first time and paint my nails. Those of you who know me will know how important painted nails are to me, and because I had to have all nail varnish removed before surgery, this was an important goal for me to get to!  Unfortunately, because I have to wear lovely surgical socks for a month, my pedicure will have to be put on hold! However, given English weather at this time of of year, this might not be an issue! 

I saw my consultant again, went through all my medications with the nurse and the plan for managing these at home. My consultant reiterated how amazed he and his team were at how quickly I was able to leave hospital which made me feel so encouraged. Getting to the point of being able to be discharged was very emotional for me because in my mind it took me back to Friday 3rd June when I was first admitted to the Marsden under investigation. It made me think about how just how far I have come. This time I wasn’t leaving the hospital with the fear I had waiting for the diagnosis, but instead knowing that the surgery had taken me one step closer to hopefully saying goodbye to ‘Cyril’ forever. 

IMG_2129I’m now back at home continuing to take each day as it comes. I am also being very organised with my medication and protein drinks! It’s only been a few days so far, but I’ve already gone through so many emotions and ups and downs. I’ve laughed, cried, felt happy and felt sad. I have points when I feel physically different about myself, and I have times when I feel pain (physically and mentally). I have to keep reminding myself that this is normal and all part of the healing process. I know that the next few weeks will be hard but there are lots of things in place to support my recovery. 

I will be working with a physiotherapist at home thanks to the wonderful support offered by Chai Cancer Care. This will help me to strengthen my muscles and areas of my body that are weaker at the moment. 

Also, my team at the Marsden will be supporting me with understanding and coping with changes in my body because of now starting menopause. It’s still a really confusing and hard thing to make sense of at the moment and especially when I think about doing this at 27. It’s going to be a hard journey but for now, just knowing that there is support for me as I start this journey, is making me feel more at ease. 

The other thing I’m starting to now have to deal with more than I was before is not ever having children of my own. At the moment, this is bringing up all sorts of emotions for me and I have to allow myself to feel this sadness. However, as I have said before, I must try to remember that there is more than one way to become a mother. I know that support is there for this too and I must call upon it when I’m ready. 

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The support that I have, and continue to have, from family and friends is such a help with recovering from my operation. They help me with something physical that I can’t do, eating healthy food, doing physiotherapy exercises with me and even just sitting and laughing with me. It is so helpful having family and friends sending me texts to make me smile and continue to push forward, or just reminding me that I’m in their prayers. 

When I stop and think about it, I cannot quite believe that I have been able to come home so quickly. I had a major operation on the 24th August, and my body ended up getting itself to the correct place so that I could leave hospital only six days later. There are so many people that I am thankful to for this. My consultant, his team and all of the surgical team, the Critical Care Unit, the ward nursing staff, the physiotherapists, my family, friends, and also myself and my own body. Back in June, I was harbouring a lot of anger towards my body because I felt it had failed me for allowing ‘Cyril’ to enter. As chemo progressed I started to feel a bit different and see that my body was now protecting me and fighting ‘Cyril’ with me. My body’s greatest test was surgery, and it has coped really well. I’m also so thankful for how my body has helped me start to recuperate quicker than expected from my operation.

Since being home, I’ve been back for a check up with my consultant and he took my bandage off to reveal the coolest scar on my tummy, which I will always wear with pride!  know that the next few weeks and more might feel like an emotional roller coaster, as my body continues to recover. But when I feel low, I am going look down at the scar and remember that my body and I are surviving stage 3 ovarian cancer. I know that this will help to push me forward, regardless of whether I feel happy, sad, angry, scared, unwell, weak or tired.  Why look at a scar to help in low moments? Keynote Speaker, Dr. Steve Maraboliexplains this well… 

‘My scars tell a story. They are a reminder of times when life tried to break me, but failed. They are markings of where the structure of my character was welded.’ 

There is a lot of truth in these words for me because my fight against ‘Cyril’ is making me stronger as a person, even when I don’t know or feel it

Back on the 3rd June ‘Cyril’ on my ovaries was suspected. On the 9th June, ‘Cyril’ on my ovaries was confirmed. Then followed nine weeks of chemo. On the 24th August I said, ‘Au revoir’ to the parts of me that had been infected by ‘Cyril’. Now I am building up my strength ready to fight any remaining ‘Cyril’ with more chemo. 

Writing this and reflecting on the huge events of the past week has reminded me once again just how lucky I am, and it makes me more motivated with my aims for #FindingCyril. I have so many people who are loving me and supporting me through my journey, which makes it all that bit easier. This is why I am adamant that I want to find ways to continue to be somebody who loves, supports and guides others going through this journey, now and forever. 

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Its been a good week

IMG_1778I didn’t update the blog last week because I had a lot happening with chemotherapy on Monday and then three additional hospital appointments. So I thought that I would update the blog at this point… I have the time to because I had no chemotherapy this week- my first Monday in 9 weeks without it!

I completed cycle three of chemo last Monday and was given the brilliant news that my tumor markers are now 16! My iron was low again which meant that I found myself back on the chemo ward the next day for a blood transfusion. This took four hours but I was as cool as a cucumber about it because I knew what to expect this time round. It was irritating that I started to experience tummy cramps during my transfusion, which makes it uncomfortable to have to sit for as long as you do, but once again I have come to the stage where I know these cramps. Also, they don’t worry me because I know they are a side effect of the chemo.

IMG_1709I also had to stop eating during the transfusion because a few hours later I was due to have my repeat CT scan As 3pm came closer, I started to get more anxious about what would be found on the scan. I could not stop myself from worrying that the chemo would not have done what it needed to, even though my tumor markers were so good. The scan itself was quick but it felt like an eternity. As the machine was doing its job, I found myself panicking and questioning whether ‘Cyril’ was being defeated or not. Once I was out the scanner, I knew it was a waiting game until Friday. However, luckily the appointment was brought forward a day and so on Thursday I got some more good news….I am overjoyed to say that the scan looked great! The cocktail of chemo drugs has successfully taken the lead in the boxing match with ‘Cyril,’ and has now well and truly started to push him out of the ring! The good news meant that I was then given confirmation that my surgery will be on the 24th August. During my appointment, we also reviewed what the operation would involve, my recovery and what to expect during my hospital stay.

IMG_1691On Friday, I was back again at the Marsden to meet the professor in charge of my chemo. This meeting reviewed the three cycles of chemo overall and the plan ahead for my chemo schedule post-surgery.  The support provided by my team at the Marsden is amazing. Every appointment feels so well planned and I go into them feeling supported, not only by my family but also my team. They are there at every stage and answer any questions you have. It doesn’t matter how many times you ask a particular question…which is good because I’m known to repeat myself!

With the consent form reviewed and signed, it is now just a waiting game. The last time I had an operation I was three years old, so the idea of having one scares me. I have this fear of waking up during the operation, which I know is not going to be the case but it does still play on my mind. When I am not thinking through that worry, I am trying to imagine how I will react and what I will see when I come round after the operation. I’m worried about seeing the wires, drains and tubes attached to me. I know these are normal worries, and that the thing that helps me calm down is reminding myself that I am in very safe hands. It also helps knowing the outline of the plan and I know that with all of the support from my family, friends and the team I will get the things I need to heal physically, mentally and emotionally.

My siblings refer to me as a ‘tenacious little thing,’ and through my chemo they kept telling me that it was my tenacity that would ensure I came out on top after three cycles of chemo. They have told me that they expect me to wake up ready and raring to get on my feet and make my usual demands such as, “I need my lip balm,” “Tie my hair up” or “Rub my feet”. I can’t see this being true right now but I am sure that they will end up being right!

IMG_1568I think at the moment I’m scared of the unknown like I was before I started the chemo, but I look back on the past nine weeks and it feels strange to think how ‘normal’ it all became as I grew in confidence with what was involved. So at this point in my battle against ‘Cyril’ I see it as having another choice to make. I can focus on 24th August or I can take each day as it comes. I’m trying to do the latter but if I’m honest I’m probably doing a bit of both at the moment, and that’s ok. I have moments where I find myself freaking about the operation and the recovery and others where I can focus more on the day ahead. With the support of Chai Cancer Care, I am going to be learning Mindfulness. The idea of this is to develop skills in focusing on the here and now and being in the present moment. I think this is going to support me ahead of, during and after surgery. It will also equip me with useful breathing exercises to do when I begin my recovery.

When I get worried and anxious I try hard to not go with all the fears in my mind but instead focus what a huge milestone I will have crossed once this operation is over and I begin to recover from it. I also know that there will be moments where this hard to do and that is okay. I know myself and I know that I can get anxious and it becomes hard to get out of that state. This is when the support around me will help the most. I also feel that laughter and humor are essential. For me that is such an important part of my personality. I’ve learnt already that when you face hard things in life, like cancer, I can’t feel sad or be serious about it all the time because laughter is such a big part of who I am.

For example, the other day, my sister and I somehow managed to change my panic into laughter by googling the following questions: “What do surgeons do when they need to go to the toilet?”, “Do surgeons get hungry and eat during surgery?” and “What if the surgeon accidentally drops something in?”  I thank Google for the myriad of interesting (and sometimes concerning) replies! My boyfriend also managed to turn my panic into laughter over a Friday night family dinner when I asked, “How will they be opening me up?” He replied with, “Bring me the rest of the roast chicken and I’ll demonstrate!”  My friend Laura also calmed me down by sharing her operation stories and the time when she wrote messages to her surgeons on her tummy with eyeliner, which they discovered in theatre!

image1For those who don’t know, I am primary French teacher. I have had a love of all things French since I was teenager, which is why I ended up studying it at university and eventually teaching French. So, in keeping with my love of French, I wanted to share a quote by Henri Matisse. ‘Il y a des fleurs partout qui veut bien les voir.’ This translates as, ‘There are flowers everywhere for those who want to see them.’ Matisse was highlighting the importance of optimism and having a positive outlook on life. I know that when I face this next week building up to surgery, going into hospital, going into theatre, waking up and then starting recovery, these moments will be scary and I might feel like I want to give up. I’m going to push myself to remember Matisse’s words. I want to remind myself to see the flowers even if they do not seem very visible.

I’ve added a mixture of photos this week from chemo and the things I have done with family and friends to keep me busy and distracted.

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