Merry Christmas to the Royal Marsden

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

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

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

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

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

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

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

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

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

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Let’s talk menopause!


Laura 1 – Cyril 0

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

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

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

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

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

 

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

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

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

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

Match two statistics 

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

 Player: Laura and her body

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

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

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

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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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My bag of sunshine!

On Monday 25th October, I was back on the chemo ward to start cycle 6! Everything went smoothly, and once again, I had my two hour dose of IV magnesium. I am also continuing with my potassium drinks at home. I passed the time by teaching my aunt how to play Top Trumps (over the weeks I have introduced her to several new games), chatting to my wonderful friend Rosie who came to see me at lunchtime on the chemo ward and by doing more online clothes shopping! This seems to be becoming a weekly occurrence, so perhaps I should leave my phone and wallet at home next Monday…

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The highlight of Monday was discovering the real reason behind my funny tummy that started a couple of weeks ago, and has taken a while to calm down. Initially, it was thought that magnesium drinks had upset my tummy, and whilst they may have contributed to it, the main reason was because I had some how got Salmonella! Everybody was totally shocked by this, particularly because I did not get sick and did not lose my appetite. The only problem I had was going to the toilet a lot more than usual! I have had food poisoning on several occasions and always been quite poorly from it, so it surprises me that I seem to have sailed through this bout of Salmonella! To be on the safe side, I’m now on a course of antibiotics for the next week.

 I have two chemo sessions left before my CT scan will be repeated, so I thought I would share what I keep in my chemo bag. My siblings prepared this bag for me before my very first chemo session  in June, and lots of things have been added to it since. I find this bag very handy because you never know if you will be on the chemo ward longer than anticipated. For example, you might find yourself there longer if you need IV magnesium or a blood transfusion, so it is good to have things to keep you occupied!

My chemo bag essentials

 1) My mindful colouring book of swear words from my wonderful colleagues is always with me for chemo. This is book is actually permanently in my handbag because I love it so much! The words (often very explicit) in this book remind me that I am pushing ‘Cyril’ out of the boxing ring! 

2) I have a wide selection of games in my chemo bag (some childhood favourites). Thank you to everybody who has purchased games for me. They have not only kept me occupied during chemo, and in the hospital, but also at home.

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3) I also keep a comfy pair of trousers (on loan from my sister) and a hoodie (on loan from my brother) in my bag. The trousers are handy if I find myself on the chemo ward for a lot longer than planned, and the hoodie is handy when I have the cold cap on.

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4) I also keep Jennifer Young mint foot cream in my bag. I got this product using the vouchers that my school generously gave me when I started my chemotherapy. Jennifer Young specializes in beauty products for chemotherapy treatment. For more information look at: http://www.jenniferyoung.co.uk/. I keep this is my bag because my wonderful auntie gives me fantastic foot massages, which I find very relaxing when having chemo.

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5) There is also a very cool bag (a gift from friends) in my chemo bag. It is full of jelly beans and other sweet things. This comes in handy after I have had my premeds, two paracetamol, Lorazepam and my anti sickness tablet. This is because I have five minutes or so where I feel like I am drunk and often end up in fits of giggles! These few minutes take me back to my Birmingham University days, and the nights that proved I could not handle too much alcohol; one of which resulted in me falling asleep on the floor of a toilet cubicle in a club! For the purpose of this trip down memory lane, I have included a photo from that infamous night (it is before my little sleep because this was not caught on camera)! I was funnily enough reminded of the other photo (the one where I am sporting a very interesting facial expression) this week. It is further proof from another night when I once again showed that I can’t handle my drink!

6) I keep my slipper socks in my bag as well because I find them more comfortable than shoes when you are sitting down for long periods of time. Grip on the bottom of shoes or socks is important on the ward as hospital floors are often slippery. 
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7) My earphones are always in my bag because I have found music is very calming for me, particularly when I feel very anxious, and it feels like my heart is popping out of my chest.

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8) My wooden comb, Paxman conditioner and soft headband are also in my chemo bag because I am using the cold cap during the treatment. The nurses use the comb when they prep my hair for the cold cap and they put the Paxman conditioner on. The headband helps to make the cold cap feel more comfortable because it covers my ears and avoids them from freezing!

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9) I also carry my journal in my bag. My siblings got me this journal before chemo began in June and started it with a childhood photo. It is now full of messages of support and photos. I keep it with me at chemo because I have met some very inspirational people on the ward, whose words of encouragement have been a huge help to me and they have written in my journal. This journal has become so important to me because in my low moments I can look at it, and it helps to give me the boost that I need.

I hope that sharing what I keep in my chemo bag can be of help to others. Without a doubt, this bag has been like a bag of sunshine that has helped to brighten up each chemo session. I don’t always use everything in it but knowing that I have it all there with me is always such a help.

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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!

 

 

Let’s talk food!

On Monday 3rd October, I was back on the chemo ward to commence cycle 5. I had a good week last week, which helped me to start this next cycle with a positive attitude. It was wonderful to catch up with my former colleague (and fellow Home and Away lover) Louisa, for coffee last weekend. I also did something that I haven’t done in a while – I went out for a family meal. Going out to a restaurant might seem like a really small thing to do, but this is something that I have found hard to do during treatment. It is hard to explain why going to a restaurant made me feel anxious, but all I know is that this getting better, because although I was apprehensive on the way there, I was able to really enjoy my trip to Nando’s!

img_2628My veins and blood behaved well again this week, and the doctors decided to reintroduce a drug called Avastin (Bevacizumab) because I have healed well from my surgery in August. Avastin is given at the start of each cycle for thirty minutes before the other chemo drugs are administered. More information about this drug can be found on the Macmillan website. Chemo went smoothly and the session just seemed to fly by. I did find myself more tired than usual on Monday night, but sitting on the sofa watching Neighbours and Home and Away was the perfect fix for this!

I have decided to talk about diet in this blog because this has been such an important part of my treatment for ‘Cyril.’ Over the past few months, I have focused a lot on diet and healthy eating. The Marsden have been very supportive with this and I have been having regular appointments with the dietician, who gives excellent advice. It is essential to remember that there will be days during treatment where you have little appetite. I’ve often had to focus on keeping my eating pattern as ‘little and often’ which can make such a difference when it comes to managing meals.

Before I was diagnosed with ‘Cyril,’ I was known to be a fussy eater (I apparently got so fussy that my sisters felt my huge intake of eggs and spaghetti meant that the nickname ‘Egg head, spag bod’ was perfect!). I turned vegetarian at the age of seven because of a story that my eldest sister told me when making my packed lunch for school one day. She called me over as she was preparing my turkey sandwich and explained to me that the marks on the turkey slices were blood, and this blood would spill out as I ate my sandwich. The story ended with her saying, ‘Every bite you take, the mother turkey will be screaming for its child!’ So when I went to school the next day and opened my sandwich I burst into tears and refused to eat it. The teacher gave me a school dinner, and when I went home I declared to my whole family that I would no longer be eating meat, chicken or fish. When asked why this was, I recounted my sister’s story, which obviously got her into a lot of trouble…. She did try to rectify her mistake by telling me that I could still eat tuna and sweetcorn sandwiches (something that I loved) because tuna from a tin is ‘artificial’ and actually a vegetable. Me being me, I naturally fell for this story too! However, I was eventually told the truth and subsequently tuna and sweetcorn sandwiches were also off the menu.

When I was in my second year of university, I lived with five wonderful girls and we often made meals together. I started to get a little bit of food envy and chicken seemed to be on my mind quite a bit. One weekend when out shopping with my aunt and sisters, they came up with a plan to get me eating chicken. Before starting any shopping, they all decided that we would have lunch at McDonald’s. They ordered an extra chicken burger and insisted I try some before any shopping could begin. Very reluctantly I took a few bites – I’m sure I probably moaned and cried, but I have two older sisters so often very little choice in these sort of situations! After that, I started to try fish, more chicken and shellfish. This was probably a good time to branch away from being vegetarian because soon after this I moved to Lyon for a year. On my 21st birthday in Lyon, I sampled my first steak. I remember explaining to the waiter that I wanted it ‘well done’ as from my little meat knowledge I knew that was the least ‘meaty looking’ option. When it arrived, I tucked in and to my surprise, finished the whole thing! Later that evening, my sisters, who were visiting, explained to me that the steak I ate was definitely far from ‘well done’ and that even they wouldn’t have eaten it that raw! Since then, I have tried more meat but have never become a meat lover and still feel a little uncomfortable at the thought of eating it. Photos from this night are shown below. I was sure I photographed the infamous steak but I can’t seem to find it!

Since being diagnosed with ‘Cyril,’ I can honestly say that my diet has completely changed, and I know that doing this has played a part in helping me get through treatment. I have never eaten so well! Everything I eat is completely fresh, but I do allow myself the occasional treat. Just after my chemo began, I had my first appointment with the dietician who gave me lots of alternatives to meat. I followed these tips and felt very reassured when she told just before my operation that I was going into surgery well nourished! She is also happy with how I am doing with my weight and eating post-surgery.

So, I thought I would give a bit of a summary about what I eat on a daily basis.

One hour before I have breakfast, I drink a mug of milky tea (made with full fat milk). I was advised to have this before breakfast to give myself time to digest it. For breakfast I will always eat eggs (usually three because the dietician reassured me that there is no limit to how many eggs you can have in one day), kiwis (if you eat kiwi with eggs they help you take more protein from eggs) and fried bananas, which I have become a little obsessed with!

For lunch, I have things such as homemade soup and pizzas, pasta with fresh sauce, mozzarella, tuna or wild salmon salads. This is usually followed by fruit. For those of you who know me well, I eat any type of fruit. When I was a teenager, the dentist told me I that I was eating too much fruit and that this was the cause of numerous fillings. I have recently become a fan of custard apples (recommended by the manager of the nail salon I go to), which have an excellent nutritional value. I highly recommend them.

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For dinner I will usually have fresh fish, chicken or quorn (this is good for the people like me who don’t like eating meat) with a carbohydrate, also recommended by the dietician. If I don’t feel particularly hungry, I opt for things like dal (made of lentils), rice and salad because although a lighter meal it still has lots of health benefits. I have also taken to eating fresh artichokes and kohlrabi, which also have fantastic nutritional value. Then after dinner, I’ll usually have some more fruit.

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Between meals I snack on nuts and dried fruit (although you should not eat too much dried fruit) and toast with cashew butter instead of peanut butter because this is a much healthier option. I also ensure that I have my two litres of fluid every day. Any juices that I have are fresh. Where snacks are concerned, I do also treat myself to the occasional bits of chocolate, crisps and cake, but I actually that find since changing my diet, these are things often taste too sweet for me. It is also advisable to avoid shellfish and raw fish whilst on treatment due to the risk of infection, and you should be careful with having takeaway. I am looking forward to my first sushi meal post treatment, and hopefully at some point next year I can’t wait to have sushi at Fu Sushi in Tel Aviv with my wonderful friend Dominique! The photo below was taken a couple years ago when we found this amazing restaurant in Tel Aviv.

1239580_10151619430078193_1313125289_nSince my diagnosis, I have been drinking two fortijuces every day. Fortijuce, which is made by Nutricia, is a ready to drink weight management nutritional drink supplement, which is high in calories and energy. I will be having them throughout my chemo because the dietician feels that they are helping me maintain my weight. They are particularly helpful on days when I feel that I have little appetite, usually the days after my chemo, because I know that I am still getting what I need.

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The hardest time I have had so far with my eating was after surgery, which I know is totally normal. At the time I listened to my body and only ate what I could manage. There were times after I had been discharged from the hospital when I could only manage eating fruit for dinner. Slowly but surely, my appetite has improved and I am able to eat more. Without a doubt, I can say that eating healthily has been, and continues to be, a major component of my treatment and in keeping my energy levels and weight at the right level. This healthy diet is something that I will continue throughout my Avastin maintenance treatment and beyond.

Jaclyn Smith, a successful actress and entrepreneur who had treatment for breast cancer explains why these changes happen to a person fighting cancer in a thoughtful and beautiful way. She says, ‘Having cancer does make you try to be better at everything you do and enjoy every moment. It changes you forever. But it can be a positive change’ The quote rings true with me because there are already positive changes for me during my journey with ‘Cyril’ and my healthy diet is certainly one of them.

At this point, I also have to say a massive THANK YOU to every person who has cooked for my family and I over the last four months. It has been such a special and helpful gift and a constant reminder of all the people who are thinking about and encouraging me to get better. Every meal has been healthy and incredibly tasty!