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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Keep calm and make lists

On Monday 7th November, I was back on the chemo ward to complete cycle six of my chemo. This also marked the end of my chemo! Below is a photo collage that my brother made for me to mark this milestone. The end of chemo doesn’t mean the end of my treatment though; it means I’ve finished one more stage of it. I will be back at the Marsden next week for a new CT scan, and to see the professor in charge of my chemo to get the scan results. I’ll also find out a bit more about my three weekly Avastin maintenance treatment.

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So back to chemo this week. After took two attempts to get my cannula in, everything went smoothly. It was great to have a visit from my consultant and specialist nurse during the day. As we stood together talking at my final chemo session, I had a flashback to 3rd June when we all first met, but in very different circumstances. I had not slept for a day, was in my pyjamas and a hoodie that was far too big for me with a crazy, ‘I’ve not dealt with my hair for two days’ hairdo. I was also filled with anxiety, fear and shock. On Monday, it was a completely different story. I was dressed in clothes that made me feel good, had make up on and had exchanged the crazy hairdo for a cooling cap. More importantly, I felt like a completely different person. This flashback made me emotional because it was another reminder of how far I have come with the support of my incredible medical team, family and friends. We all spoke about what I was going to do to celebrate getting to this point. I have a long list, but the first thing I plan to do is get my nose pierced! After years of saying I want to get it done, but being too scared of the pain, I’ve decided to go for it. Given the amount of cannulas I’ve had this year, and not forgetting the major surgery bit, I’m hopeful that a small piecing will be nothing in comparison!

Back to chemo this week…My magnesium and haemoglobin were low, so that meant another 2 ½ hours of IV magnesium and a 4-hour blood transfusion after my chemotherapy drugs. I ended up being at the Marsden from 8am-9pm… A new record for me! As I was there so late, I had to be transferred to an inpatient ward for the final unit of blood, because the chemotherapy day unit closes at 7pm. Luckily I had plenty of evening company. It was wonderful to have my friend Rosie, my dad, my aunt and my sister with me. I also received beautiful bouquets of flowers from my friends Rosie and Jessica. As I have explained before, flowers make me think of 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, which is something I know I need to be doing, despite the uncertainties that I feel I am facing.

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That evening on the ward, it was such a wonderful surprise to see the first nurse I met at the Marsden the day that I was transferred there from A&E back on 3rd June. She put my first Marsden cannula in, and it seemed quite fitting that she took the cannula out from my final chemo session. I hadn’t seen her since that first night, so I got to tell her all about my treatment and the blog.  I’m also so pleased that she now has a Finding Cyril band!

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In last week’s blog I spoke about my fears regarding my future health and how the ongoing support from my medical team, family and friends is helping me to deal with these fears. I also mentioned the need to find ways to cope with some of the difficult feelings and emotions. A few days ago, I tried something else – I decided to write a list called: ‘Normal Things.’ This list (I have shared a snippet of it below) includes lots of things that I haven’t done over the past six months, because I either haven’t felt able, or have been too anxious to do. Some of the things might seem really easy but they have become quite hard for me. My theory is that this list of things will help me to keep busy between my now three-weekly maintenance treatments at the Marsden, and therefore help keep my mind from focusing on what my tumour markers will be doing, and my worries about the future. My idea of the list relates to something that the American writer Dale Harbison Carnegie once said: ‘Inaction breeds doubt and fear. Action breeds confidence and courage. If you want to conquer fear, do not sit home and think about it. Go out and get busy.’ As I have said before, I know that it is a case of trial and error to find the coping mechanisms that will help me deal with the uncertainties that I face, and I might have to adapt and change these mechanisms depending on what I am going through. I’m pleased to say that I’ve already ticked three things off my list this week….I took a tube on my own and went to my Marsden appointment on Wednesday on my own! On Thursday, I went to a shopping centre for the first time since my diagnosis and made some great purchases! I know that there are bound to be days when whatever I try to do to help me cope might feel futile, and that I may feel like I don’t know what my next step is. For now though, I’m just trying to stay focused on reminding myself that when things get tough, I have to get tougher and continue to push forward, however hard it feels.

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As I enter into the next phase of my treatment, I also find myself reflecting on the last six months, and the fact that I have learned, and I continue to learn, that I am a lot stronger than I ever thought I was. There have been many times in my life where I have questioned my ability to do things, or thought that I was not strong enough to deal with certain things that were happening. But ‘Cyril’ has shown me that there seems to be a lot of truth in Bob Marley’s famous words: ‘You never know how strong you are, until being strong is the only choice you have.’

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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.

 

Something to smile about on World Smile Day!

Before I was admitted for investigation to the Royal Marsden on the 3rd June, I visited a gastroenterologist who told me that my symptoms were due to constipation and he sent me home with Movicol. With this in mind I thought it would be good to go to a ‘Legs, Bums and Tums’ class to get things moving. I remember at the time not enjoying this class because every exercise I did hurt a lot more than usual, and I remember feeling as though things were moving around in my tummy. It’s still strange to think back to that time now that I know it was in fact ‘Cyril’.

Once I’d started my chemo in June, I felt too anxious to go back to the gym. I think this was because I was worried about feeling unwell, being in a confined space and also picking up a virus. I made sure that I did a lot of walking but didn’t ever go back to the gym.

After having my operation, I knew that physiotherapy would be an important part of my recovery. As I explained in my surgery blog, the Marsden physiotherapy team was incredible at getting me moving post-surgery and with preparing me for managing at home.

As I was discharged from hospital earlier than anticipated, keeping up physio at home was really important. Chai Cancer Care provided me with amazing support because I had  weekly physiotherapy sessions at home. This was brilliant because at that point in my recovery I was much weaker so it was comforting to have these sessions at home. After a few weeks, I started to progress to harder exercises which was a great motivation for me to keep going with it.

Today marks another special day for me – I had my first physio session at Chai Cancer Care in the gym. It felt very surreal entering a gym again. Not only did the session work on my core stability, but I used an arm bike, cycled for eight minutes and even did steps ups! Even though I was very out of breath and tired after the session, I was on cloud nine! It was a huge achievement for me and reminded me of just how far I have come. Now I can’t wait to get my gym kit back on for session 2!

At this point, I want to say a huge thank you to the Marsden physiotherapy team who got me up and moving after surgery and prepped me with exercises to do at home. I also want to thank the Chai Cancer Care physiotherapists who have supported me with my rehab at home. It’s not always been easy and there have been days when I’ve felt really tired and weak from chemo, but I have tried hard to keep up with my exercises as much as I can because they are so important to my overall recovery.

I’ve achieved something big for me today and it reminded me again that ‘Recovery is a process. It takes time. It takes patience.’ Sometimes it feels like it takes everything you’ve got. But there are people who are highly experienced and skilled in knowing how to get you to your goals, and with their support physical recovery is achievable, even when it sometimes feels unachievable!

 

 

A tricky week

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

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

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

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

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

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

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

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

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

Everybody needs good neighbours…especially when recovering from surgery.

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

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

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

 

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

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

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

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

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

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

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

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

 

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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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