‘The world is your catwalk, so just remember this when you are out there’ (RuPaul)

On Saturday 9th September 2017, I took part in the ‘Touch of Teal Glitter Gala.’ The proceeds from this event were donated equally between five charities: Target Ovarian Cancer, Ovacome, Ovarian Cancer Action, Penny Brohn UK and The Royal Marsden Hospital Charity. I was honoured to be chosen to model at the event alongside fifteen other incredible women who have all been affected by ovarian cancer. We took to the catwalk in front of a large group of people with the aim of continuing to raise much needed awareness about ovarian cancer. As a group, we covered a wide age range for diagnosis; the youngest person being diagnosed at 17 years at the oldest at 72. The age range is something that we must always remember – although rare, ovarian cancer can hit at a very young age.

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The event was put on by Adele Sewell and her incredible team. Adele is a BRCA 2 carrier. She has had BRCA-related breast and ovarian cancer. During my own cancer journey, I have had the pleasure of getting to know her, initially when I modelled at ‘Tea with Ovacome’ in March of this year. To me she is quite simply incredible. She’s always there for you, helping you to push forward at the times when it all feels too much or when Jaws (my anxiety pet shark) makes an appearance. She has enabled so many women who have had or have ovarian cancer to get an opportunity to celebrate how far they have come and at the same time raise awareness for ovarian cancer. She meticulously plans out the event days, making sure that the models get their hair and makeup done, have time to eat and rest but also spend time with the other models. She does everything in her power to make sure that her models look and feel beautiful and have a day to remember.

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The day of the gala began with a catwalk rehearsal before we headed off for hair and make-up. After this we had a quick dress rehearsal before starting our first run. Every time a model stepped out onto the catwalk it felt like a celebration of life, strength and determination. This catwalk is a catwalk like no other. It supports women battling this horrendous disease and also those around her. It shows people what it looks like to not only live with cancer but to live well with cancer. Watch the video below, which was taken by a member of Adele’s family and you will see exactly why it is a catwalk like no other.

The women who I got to share this day with have so many different roles. They are daughters, girlfriends, wives, mothers, aunts, grandmothers, cousins, friends…I could keep going. So with that in mind, think about how many people are in some way walking down the catwalk with them. This is because when you’re diagnosed with cancer, everybody around you is also on the journey with you. Watching you on the catwalk is a moment for them to also stop and reflect as well as cheer and support their loved ones on. One of my older sisters, who volunteered at the gala, got to see me on the catwalk and join in with my excitement.

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One of the best things about being part of the day is being able to talk with the other models and share experiences. We spoke about all aspects of our journeys including: chemo, surgery, Avastin and menopause. As someone going through menopause at 28, I get so much encouragement and comfort from talking to other ladies going through this journey. Below are some of the photos I took back stage!

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As well as a fabulous fashion show we heard from members of the associated charities and the amazing work that they are doing. We were also reminded of the symptoms of ovarian cancer, and the importance of raising awareness of these often misdiagnosed symptoms. Adele showed the audience a photo of herself from just before she was diagnosed where she looked about 6 months pregnant. She explained how it was only as this point that doctors became alarmed, and realised that it was not just bloating but something more serious. She spoke about the importance of raising awareness to try and make sure that women don’t need to get to this stage before alarm bells start to ring.

I know this experience only too well. Despite me looking increasingly bloated and pregnant in the weeks before I was diagnosed, doctors put this down to constipation. A second visit to A&E in one week led to the discovery of abnormal blood results and finally a CT scan, which highlighted the real problem. Two days later, I had six litres of ascites fluid drained off my abdomen. This experience is something which has and continues to affect me. Whenever I hear movement in my stomach I get anxious and Jaws comes out to give her two cents about how that might be a sign of ascites build up again. Whenever I have my abdomen checked at the hospital I always ask about fluid because it still terrifies me that before my diagnosis it was wrongly put down to bloating and constipation. This is why Adele’s words from the gala are so important to me. If you experience persistent symptoms that are the same as those of ovarian cancer get checked.  If something doesn’t feel right, ask more questions. You know your body better than anyone. Too often women are diagnosed with the disease in the advanced stages because the symptoms are initially put down to something else. And although rare, it can happen at any age. I say this as someone who was diagnosed with advanced ovarian cancer at the age of 27, which was a factor in why I was initially misdiagnosed. But it happens. At any age. Below is a photo of me before my diagnosis with my pregnant looking belly. I find this photo hard to look at now. This is because I took it to send to my siblings as I was about to tuck into a bowl of prunes and drink yet another Movicol to deal with my ‘supposed constipation.’

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Cancer can often make you feel very different about your body, but experiences like the Glitter Gala are reminders of the importance of not only feeling good in your skin but also appreciating your body for all that is has done to get you to where you are. One of the body worries I have a lot of the time now is my new menopause body temperature. I seem to have developed a new internal temperature switch that is ALWAYS on. It means that I rarely ever feel cold (gone are the days where I thought about buying a snuggly winter coat!). I can have so many hot flushes in a day that I don’t often put make up on because you can guarantee that it will have melted off within the hour and left me sporting panda eyes. So having my make-up done professionally on the day was especially enjoyable for me, and it meant that I got to learn some tips from the make-up artist team about little things I could do to make it stay on better. This one of the ways I came away from this catwalk experience with renewed self-confidence in myself and my body. I am incredibly grateful for this.

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The gala was also perfectly placed in the calendar because September is gynaecological awareness month. This means that it’s a great opportunity to take time to learn about the symptoms of the five gynaecological cancers, including ovarian cancer. It takes only five minutes for you (men and women) to look up the symptoms then another five minutes talking and sharing them with someone else. That is how we will be able to keep raising awareness. I’ve also included some links below.

http://www.cancerresearchuk.org/about-cancer/womens-cancer

https://eveappeal.org.uk/gynaecological-cancers/

https://www.rcog.org.uk/en/patients/menopause/gynaecological-cancers/

http://www.macmillan.org.uk/information-and-support/ovarian-cancer

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Oscar

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Navigating a booby trap

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

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

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

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

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

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

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

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

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

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

 

 

 

 

Ca125… I think we should just be friends

Three weeks ago, I had my usual dose of Avastin at the Royal Marsden. I’m so used to the routine now. I go in on Wednesday, have my usual checks including my Ca125 (the marker used for ovarian cancer) and then the IV Avastin goes in. The next day I find out my Ca125 level. Up until now the levels have been pretty stable. It becomes a bit like a challenge to me – to hear that the number is as low as it can be. But that week my Ca125 went up from 12 to 24. I was forewarned that an increase might happen because at the time I was on antibiotics for an infection. However, when I heard the number over the phone it took all of about thirty seconds for me to spiral into a panic. This was despite me knowing full well that a Ca125 of 24 is still considered normal. It was also despite me knowing that a Ca125 levels naturally fluctuate AND that a Ca125 level is responsive to an infection in the body. That’s a lot of evidence to suggest ‘NO NEED TO PANIC’. But logic didn’t seem to work as well as I hoped. My fear about Cyril finding his way back is often at the forefront of my mind and so hearing something that was out of my routine caused me to not think clearly. I should probably mention at this point that the panic happened while I was wearing a superman t-shirt (the irony is not lost on me). However, I was in a very special place at the time. I was in the reception of Chai Cancer Care waiting to have a counselling session. The staff there were amazing, they held my hand, spoke to me calmly and made sure that by the time I left Chai I was calm. Below is a photo I captured of myself in my superman t-shirt prior to the panic attack taking place!

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I was back the Marsden the following day for an unrelated appointment and the team did everything they could to reassure me. If I’m being honest, all I wanted was for them to do the test again as soon as possible in the hope that the marker would have gone down. I know now that was anxiety talking and that their plan to ‘keep to the plan’ was the best decision. Checking the marker while I was still on antibiotics (and likely to still be harbouring infection) would probably give an inaccurate reading. I was also reminded of the fact that nothing had really changed. My Ca125 was still very much in the normal range. I was also reminded that my body is not robotic, and that levels will go up and down and although I have no control over it, I do have control over how I choose to deal with this. So instead of talking about the marker, we talked about focusing on how I keep myself relaxed and take some control over anxiety when it comes to my health.

That night I also realised something else. I am far too attached to my Ca125 level. I know why. From my very first chemotherapy session, getting the level has been such a positive indicator for me that chemotherapy and surgery was working. Each week I would get a print out with my markers and the drop each week was amazing…. It went from the thousands, to the hundreds, to double digits and sometimes even single ones. I was winning! Knowing that number kept me going. A Ca125 rise and resulting anxiety was also not new to me. It has happened before, a few weeks after my surgery (as I was told it might). At that time, the team also had a hypothesis. They thought it was due to some residual fluid on my lung from the surgery and sure enough the level went back down to where I wanted it to be the following week.

But this time was different. I have been so reliant on the number for so long and because I was so aware of feeling stress and anxiety about it, it left me wondering whether I needed to have a different sort of relationship with my Ca125. So over the last few weeks while I was waiting to get my levels checked again, I tried to keep a note of my thoughts and feelings about Ca125 as a way of finding out how to best make these changes. There was also another function to this. To encourage me to do more things that would keep me busy and distracted which for me has always been a great tool for managing anxiety.

I’ve put in a few of my notes from the last few weeks:

27th May 2017

Today I tried to focus on keeping busy and making myself feel good. I had brunch with my friends, followed by afternoon tea with a friend, had my hair cut and then spent the evening with my boyfriend. Keeping busy definitely helped but it didn’t completely take the Ca125 fear away. For example, as I was having my hair done I kept looking in the mirror and found myself fighting with Cyril. The conversation went something like this: 

 “Laura, while you’re sitting there enjoying your blow dry, I thought I’d remind you that your Ca125 has doubled,” explained Cyril.

 “It is still within normal range,” replied Laura.

 “But are you sure you feel okay?” asked Cyril.

 Laura didn’t reply. All of sudden it seemed like she was experiencing every symptom under the sun.

 (This type of conversation happened a lot that day so each time it started I would try to imagine walking away from it and engage in something else)

 28th May 2017

I’ve definitely worked hard to keep my mind off tumour markers today. I find the more I do the less Cyril pops by. Retail therapy and a visit to the nail bar helped. I’m reminded of a quote I read once: ‘Life can’t be perfect but your nails can be’. I picked a glittery colour this week so I can look down as my nails and smile. I’m going to try to remind myself to look at the glitter every time I start thinking I have a symptom because when I think rationally about it, I know it’s the anxiety talking.

 29th May 2017

I woke up feeling calm today. I then thought I could feel pain in my stomach and that was it. Panic set in. I manage to stop it getting too bad by talking about it with my dad. So perhaps there’s a strategy for helping me deal with Ca125. When I feel the panic rising, talk to somebody. The conversation took about two minutes and helped me come back to reality. That reality being that there is currently nothing wrong with my Ca125 and I have no symptoms… other than being hungry in the morning. So going forward I’m going to remember that talking to somebody when I sense anxiety arriving helps. This will most definitely mean repeating myself, but I’m well known for this already so people probably expect this anyway. 

 6th June 2017

 I met a new friend today. We got on so well that it was like we were meant to meet each other. We are on very similar BRCA cancer journeys (at the same age), and seem to think and feel lots of the same things. Meeting her made me realise that I am not on my own with struggling to deal with the bumps in the road post treatment and it felt great to be able to talk to someone who knows these bumps.

 7th June 2017

Today was one of those days where I doubted my decision to get some distance from my Ca125. Anxiety was the flavour of the day and I got consumed by a red mark that I noticed on my breast and without much thought, I instantly decided it was breast cancer. Writing this now, I know how much that was anxiety talking and not me. But at the time all I wanted was reassurance. So I went to the GP this morning, and she very quickly able to assure me that I was fine and we both agreed that this was anxiety talking again. We thought about what I could do for the rest of the day to keep anxiety away.

8th June 2017

Today something I spoke about with my counsellor has stuck in my mind. We were talking about how up and down I was feeling because of my Ca125 and the power it can have over me. She reminded me that I must try not to let anxiety get the better of me because if I do, lots of other things will pass me by. I’ve seen over the last couple of weeks just how crippling anxiety can be physically and emotionally. And it can be responsible for things I never even considered, like my eczema flaring up around my mouth. It’s not easy to remember but I’m trying to remind myself that the more time and worry I give to Ca125 anxiety, the less attention I can give to other things. Like eating ice cream (which I went to do this evening). Ice cream and chats with one of my closest girlfriends was the just what the doctor ordered.

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 9th June 2017

Today marks one year since diagnosis. It’s especially important for me to try even harder than usual to put the low moments of the last few weeks to one side. Today needs to be about celebrating how far I’ve come in a year and how lucky I am to be able to say that. When I begin to feel anxious today I’m going to remind myself that this time last year my Ca125 was 3,052 and at the moment although it did increase, it’s still normal range.

It has been important for me to mark this day because of how lucky I am to be able to and so along with my sisters and a few friends I attempted to pole dance. And I had the best time! I suffer from a lot of body ache now as a result of treatment and/or menopause but the extra ache from the class was definitely worth it! I think a few more classes are needed before I can even remotely look like I know what I’m doing but I’m going to keep trying!  

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 14th June 2017

Today was Avastin day. It’s been three whole weeks. I was nervous but also relieved – there is something very comforting about stepping through the doors of the Marsden. The doctor examined my stomach, my bloods were fine and the team reminded me again their theory is still that the infection was the reason for the rise. The plan was to wait for the marker result this week and only if it was out of normal range I would have a CT scan. After treatment my dad and I had our usual post Avastin burger before heading home. That afternoon my doctor called to tell me that my Ca125 had gone back down from 24 to 11. I instantly felt relief rush through my body.

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I started writing this blog a few weeks ago because I knew that I wanted to keep track of how I was feeling and what I was doing to help manage the anxiety. After hearing that my markers were back down I’ve realised something I didn’t anticipate a few weeks ago. I think that perhaps this experience needed to happen to help me realise a few things. Firstly, that I was becoming too attached to an arbitrary number. I have to remember that the number doesn’t have the same meaning as it did when I was on chemo because regardless of the number, it is still in the normal range. Secondly, it can be very easy for me to get so caught up with a change in number to the point that I forget that it is also about listening to my body and looking out for symptoms that I have come to know so well. When anxiety is present, that becomes much harder to do because of all the symptoms that anxiety brings on itself.

And lastly, I need to remind myself that this is probably not the last time my Ca125 marker will rise. Just like a break up (think Ross and Rachel), my Ca125 and I will be the sort of couple who are on-again, off-again, again, again. I’ve thought about whether I make the decision to not find out my marker level anymore but instead just ask my team to tell me if it’s ‘normal’ or ‘not normal’. I think I’m going to try that soon to see if it helps me to disconnect from it and reassure myself that I do actually know what is normal for my body, instead of fixating on a number going up and down. But whether that works or not, my Ca125 will still be in my life and I want it to be because it gives me hope and encouragement. But I know now that we need a different relationship and that it’s my responsibility to make the changes. So today I’m raising a glass (actually it’s my water bottle infused with lemon and mint as I don’t drink) and the toast is to the end of my relationship with my CA125 but the start of our friendship.

 

 

 

 

 

 

That time I travelled 1,310.2 miles away after cancer

“Laura are you sure that you trust your body to go on holiday?” asked Cyril.

 “Yes!” exclaimed Laura.

 “But what if we need the Royal Marsden?” replied Cyril.

Laura went quiet. Cyril’s words sent a shiver down her spine and left her questioning her decision. It also left her questioning her body, only after recently having started to slowly trust it again.

Cyril and I had many of these conversations in the lead up to the holiday that I booked with my siblings. We had booked a short break in Italy for April 2017. We timed it so that it fit with my treatment and chose a place that would be warm (not hot), easy to get to and close to the sights so I could easily rest at the hotel if I needed. We had considered everything but Cyril tried his utmost to convince me that I couldn’t go away. And at times he very nearly won. However, I couldn’t give into him; I couldn’t let him win because I knew that would have made me feel worse.

I spent a lot of time talking about the holiday with my counsellor to help me feel as confident as I could about being away from home and far from hospital for the first time since I was diagnosed. Talking about it helped me to make sure I had a ‘toolkit’ packed with me. This included: my colouring pencils and mindfulness colouring book, my reading book, headphones, enough diazepam (15 tablets) should I need it and many more clothes than I could have ever needed but in case my hot flushes and sweats were particularly bad. My brother and sister did all of the planning for this trip, which really helped me because it meant that all I had to focus on was mentally preparing myself. They did an incredible job and thought of everything. For example, they chose a hotel which had an outdoor pool and an indoor spa so that I had the option to relax during the day if I needed it because I get tired out quite quickly.

I had great support and reassurance from my medical team about going away; they all assured me that it was fine to go away while on Avastin and gave helpful advice about things like travel insurance, which becomes much more of a bother once you tell the insurance companies you’ve had cancer, that it spread and that you’re still on treatment. There are some companies that deal specifically with people with health conditions and especially cancer so it was good to have done our research beforehand. My team took time with to ensure that I felt as confident as I could, reassuring me but also reminding me that if I had any problems all I had to do was call… Initially it was like I had forgotten that being abroad did not affect my ability to contact the hospital.

For me, my main fear was that something bad would happen with regards to my health when I was away and it was that thought which would leave me feeling panicked. I was so desperate for this trip to go perfectly to prove to myself that I could do it; I think at times I got so caught up with this that I lost sight of the fact that we are all taking a leap of faith when we go on holiday. We can never be sure that it will go completely to plan and I had to try to remember that, otherwise I knew that Cyril and I would be having far too many conversations in my head while I was away. Reminding myself of this made me think more logically and remember my experiences of holidays when not everything has gone to plan. For example, I thought back to all the times I would get colds from air conditioning so I reminded myself that if that happened I couldn’t immediately blame it on Cyril.

I was nervous and excited in the lead up to going away. It was a very strange experience being in an airport around so many people. When our plane touched down in Naples, I initially felt elated but that was quickly followed by Cyril starting a conversation with me:

“You know Laura there’s no Royal Marsden here.” Cyril said.

 “I’m well aware and I’m going to be fine” I replied.

And honestly I was. I’d be lying if I said it was always easy but from the moment I stepped off the plane, everything seemed to go to how I wanted. I felt able to enjoy everything we did. I’ve become quite good at knowing my limits and when I need to stop so I never got overtired or rundown. I didn’t want to risk that happening because there were too many things do and enjoy (ice-cream mainly).

My brother had done a great thing and booked some things from London which helped me have a plan in mind for what the days would be like and when I would need to be up early. He had booked a brilliant cookery class with Chef Carmen Mazzola at ‘La Cucina del Gusto cooking school’ (I’ve put the link at the bottom of this page). If you are ever in Sorrento, I would really recommend this experience. Carmen is wonderful and knows so much about Italian cooking. Thanks to her I can now make tasty gnocchi and pizza. I also know the best way to store mozzarella cheese and the best way to make fresh pasta sauce. I won’t tell you though; I’ll leave that to Carmen when you visit her!

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In previous blogs, I have written about the changes that I have made to my diet since cancer. This is a huge thing for me because throughout my treatment so far, I have seen the benefits of these changes. For me it’s also a little about control, I like that I can be in charge of what I put in my body and make sure it gets all the things it needs to stay healthy. This was especially important during chemotherapy but is also something I have continued with since. I feel so much better for it but I know that one of the challenges for me is learning to not always be as strict with myself about it and that it’s ok to be flexible with my diet guidelines. Going to Italy was therefore quite a test for me. I was out of my usual environment and so it meant that I had to practice being less regimented. And I did it REALLY well! I even went as far as to swap my daily bananas for banana ice cream, which I mostly ordered as two scoops in a cone …. And sometimes twice a day! I’m fairly sure that I went into an ice cream induced coma on our last night! Also, I didn’t find myself entering into my usual daily conversation with Cyril about how much I’ve eaten. The conversation usually goes like this:

 “Laura, are you sure you have eaten enough?” asked Cyril.

 “I think so,” replied Laura

“Hmmmmm, I’m just wondering if you haven’t actually eaten enough but instead you’ve got full too quickly. Like you did just before I was diagnosed….?” answered Cyril.

Cyril and I often enter into this illogical battle about how much I’ve eaten and whether I have eaten enough. It comes from an ovarian cancer symptom that I battled with in the weeks leading up to diagnosis, feeling full too quickly. This is like a little niggle that is always in the back of my mind and it can sometimes lead to a lot of anxiety. I think this sort of thing is really normal and I try to remind myself that it takes time for things to adjust back to a version of ‘normal’ (whatever that is). One of the best things that I took away from my holiday though, was noticing when I might be over thinking my food and fullness worries. This is something that I am really trying to improve on since coming home.

I mentioned earlier that I took 15 Diazepam with me because I can have up to three a day. How many did I take you ask? The answer is NONE! You see I had a few different medicines. I walked from the centre of Sorrento right up to our hotel on a hilltop, I dipped my feet in the sea, I treated myself to foods that I would have not normally eaten and had an afternoon nap on the beach in Positano. This type of medicine was amazing…I can’t wait for my next dose!

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When we landed back in London, Cyril and I had one more conversation:

“Cyril, I did it. You didn’t stop me,” I said.

 Cyril remained silent, avoiding eye contact with Laura.

 “So you do realise that I’ll now be going away on more adventures Cyril,” continued Laura.

 Cyril got up and started to slowly walk away.

I am really so proud of myself that I didn’t let Cyril win and stop me from taking the plunge to go on holiday. With the help of my siblings and my medical team I put him in his place and got on with my 1,310.2 mile journey and had the best time ever! I thought I would put down a few of the main things from my experience that helped me. I will be reminding myself of  these ahead of my next holiday

Five of my top tips for going away for the first time after cancer

  1. Pack some snacks for the journey out and any delays – I took lots of nuts and dried fruit because I know this fills me up. It also meant that I had something to keep with me in my bag on day trips. I actually ended up eating very few of them (see above) but it was helpful to know I had them, especially on the journey out there.

 

  1. Take extra clothes – going though the menopause means that my body temperature changes constantly during the day so the extra clothes, and especially the layers were crucial!

 

  1. Find a hotel that is nearby to some of the paces you want to visit – Although I didn’t need to as much as I thought, it was great having the option of heading back to the hotel for a rest or relaxing for a few hours before dinner.

 

  1. Feel confident to be able to say when you can’t do something or you do need a rest – My siblings were great about this and always checking in with me if I wanted to do something (like climb a giant hill… although I think my brother kept checking with me because he was the one who didn’t want to!) But I also had to be responsible for myself and say when I needed to stop or not do something.

 

  1. If you want to do something, DO IT! This is the most important one. It seemed to happen naturally because I was so excited to be away, so found myself taking advantage of everything… If I wanted two ice creams in one day, I had them. If I wanted two starters, I ordered them and if I was unsure about whether I needed to buy that extra art print, I just brought it! And I’m so very pleased I did.

Link to Chef Carmen’s cooking school: https://chefcarmensorrento.com/mobile/

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BRCAfest

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

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

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

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

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

 

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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. 

 Diagnosis

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

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 Chemotherapy and day treatment unit nurses 

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

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 Inpatient ward nurses 

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

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

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Clinical Nurse Specialist 

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

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

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

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Be BRCA aware


Merry Christmas to the Royal Marsden

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

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

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

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

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

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

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

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

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

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