BRCAfest

It is nearly time for BRCAfest! We currently have 54 tickets that will be available on the door for £20. You can still purchase tickets online by using the link below.

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

1:30-2:00 – There will be a chance to look at things to buy, purchase great drawings by Fiona Cohen, purchase raffle tickets, enter the auction and eat and drink lots of tasty food.

2:00 – A brief introduction by Laura Moses. This will be followed by a talk from Mr John Butler, who is a Consultant Gynaecological Oncology Surgeon at The Royal Marsden.

After the talk we will do the raffle and complete the auction! Please bring extra money with you, if you would like to take part in the raffle or auction. Raffle tickets cost £10 per 5 ticket strip, and we will be accepting cheques for auction prizes.

 

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Marching through March for the Marsden

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Angels in comfortable shoes

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

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

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 Chemotherapy and day treatment unit nurses 

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

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 Inpatient ward nurses 

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

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

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Clinical Nurse Specialist 

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

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

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

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Be BRCA aware


Merry Christmas to the Royal Marsden

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

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

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

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

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

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

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

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

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

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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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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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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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