Getting good at being me

Friday 24th August 2018 was a strange and special day. It marked two years since my cancer surgery.

Surgery was the mid-way point between six cycles of chemotherapy and, to me, was the goalpost for the first half of treatment. Ahead of surgery all I focused on was getting myself in the best shape for surgery, and this became my main motivation during the initial treatment months. Post-surgery was quite different. I was physically weaker, and as a result chemotherapy was that little bit harder to manage. We were moving into the autumn months; this meant that the days were shorter, and there was less time to enjoy being outside, which was something that had really helped me at the start of treatment.

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Leaving the hospital six days after surgery.

After that it was a further year of treatment, and this November will hopefully mark two years cancer free. So as you can imagine, its been quite the journey; with a lot of ups and downs along the way. In many ways, its been about reconnecting with my life pre cancer, whilst also finding a new way of life because things are not at all the same. I think Dennis the Menace (of all people!) perfectly sums up how I feel when he says:

“The best thing you can do is get good at being you.”

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For me its felt as though I have needed to take a few steps back and learn how to get ‘good at being me, with the new bits of me included,’ When the diagnosis came, I was very close to finishing my Masters degree, which I quickly realised was not going to be possible to do at the time. So I put it on hold, and once treatment ended, I had to pick up where I left off and finish the work. In some ways, it was harder than I imagined because going back to something with a whole new part of myself attached felt really strange. But there were also things that actually helped. I had a much clearer sense of my priorities,  an ability to notice when I was getting caught up in work stress, and developed strategies to help focus on looking after myself.

So I’ve had to learn to get good at being both the old and new bits of me. And there are bits of new me that are really not easy to get used to. I’m trying to hold onto the fact that in order to be ok with something difficult, you first have to acknowledge that it exists. So these are the five things at the moment that exist as part of me, which I’m trying hard to get good at being ok with.

A fear of relapsing and whether treatment would work a second time

I often battle with my internal cancer panic button. Jaws (my anxiety pet shark) will often switch it on without me even realising. Usually its to do with something in my body, which I’ll notice and then fixate on.  Some examples include: a recent episode of back pain, fainting on holiday, and a pain in my left breast. My rational side knows there are good reasons for these symptoms. The back pain came after I attempted to lift weights in the gym, the fainting happened in a hot climate after I jumped out of bed to go to the toilet, and the breast pain has been there on and off for some time; my consultant has checked it multiple times and has not been worried. But all these rational thoughts go out the window once the button has been pressed, and then I can react in very different ways. Sometimes I might stay calm or go into a silent panic, or I might go into a full blown panic, eventually convincing myself that cancer is back. A full blown panic makes it very difficult to reason with Jaws and convince her to switch the cancer panic button off.

I know that I can’t change or get rid of my anxiety about cancer returning. I’ve accepted it as a normal consequence of my situation. However, what I am getting better at reminding myself of is that a diagnosis of cancer doesn’t automatically mean the end. It can be treated, even when dealing with relapsed cancer. So even if my cancer were to come back, it is still a fight that I have done and can do again. By reminding myself that all is not lost, even if the worst happenes, I’m getting a little bit better a being Laura post-cancer; a me who is always going to have this worry, but can learn to notice it, acknowledge it, and try to let it go.

A fear of getting breast cancer

Ever since I was diagnosed with BRCA related ovarian cancer, my BRCA related breast cancer risk feels more real. Statistically at the age I am, I’ve always been at higher risk of breast cancer than ovarian cancer, so the fact that my body didn’t follow the statistics fills me with uncertainty and dread. Truthfully, I’m terrified of getting breast cancer. I often wonder about what it would be like and what treatment I would need. Perhaps worse than this is my fear of losing the chance to take control of the risk. The plan (before cancer) had always been to have a preventative mastectomy before the risk of breast cancer started to rise around the age of 30. That obviously couldn’t happen and because of the high risk of recurrence, it can’t happen yet, at least for a few more years. So instead I have to work with the new plan of close monitoring. My boobs get an MOT every three months so if breast cancer was found it would be found early, and a new plan would be made to give me the best chance of beating it. I’ve had to redefine what control means for me with this, and I am trying to think that I actually do still have control because I’m choosing to attend three monthly screening. So that’s what I need to keep saying to myself. Reminding myself of the facts here is helping me to get better at being ‘Laura post cancer’ AND ‘Laura increased risk of breast cancer’.

Hating my breasts

Ok it sounds harsh but it’s true. I hate my breasts. Over this year, I’ve been trying to get my head around my strong and negative feelings towards my breasts. But the simple truth is I hate them. I know what they could do to me and very early on in my cancer journey I found that I had completely disconnected from them because of this. I don’t see them as part of me anymore, and although it may sound weird, I’m excited to get them removed; I’m actually looking forward to that day. For me it will bring a sense of empowerment and freedom. But the key word here is when. It can’t happen yet and there is still uncertainty about when it can happen. So that has meant that I’ve had to start to learn to shift my thinking and feelings of hate because I know that I don’t want to be carrying that about all the time. I don’t want to focus on negative aspects of my body because I am proud of my body and all it has done for me.

I can’t completely change how I feel about my breasts but I can change the way I relate to them and in turn, try to let go of some of the negativity that I can have towards them. So I’ve chosen to take action in a few ways. Firstly, I’ve made sure that I get better at checking them myself (I’ve even shown my sisters how to check!). Secondly, I’ve started buying clothes that I like rather than clothes to try to hide them. Whether I like it or not, they are there and are part of me for now. I may not like them but quite honestly, focusing on ways to hide and ignore them is actually much more effort than just letting them be there. Lastly, I’ve made the choice to try and not to keep asking about surgery when I see my team which is what I’ve been doing up until now. I would let myself get excited that they may have changed their view and when I realised that wasn’t the case, I would leave feeling disappointed. But I know that it will happen when my doctors feel it is the right time and that needs to be good enough for now.

I’ve got a long way to go with this one, but at least I’m starting to feel more comfortable still having my breasts (even though, yes, I hate them). It’s making the wait easier to manage and this way of thinking and acting is helping me to get better at being Laura post cancer.

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CoppaFeel provides great information to help with self-checks.

Menopause 

Entering the world of menopause at the age of 27 was bewildering, turbulent, surreal and very emotional. You feel like you’ve aged before your time. An early menopause increases the risk of conditions such as osteoporosis and heart disease; two risks that often play on my mind. However, remembering that these things are being closely monitored and that my body being in menopause actually saved my life (my cancer ‘fed off’ hormones like oestrogen) helps to put the increased risks into perspective.

My other way of dealing with the menopause effects is to laugh. Just the other day, a friend who also lives with early menopause were able to control a hot flush simply by calculating the saving we make on winter clothing and heating bills! The whole ‘laughter is the best medicine’ is completely true for me. This is happening and in order to get good at being me I have to get good at sometimes being ‘overheated and achy bones’ me.

 

Fertility 

Losing my fertility to cancer at the age of 27 was one of the harder things to get my head around. I was diagnosed on a Thursday and the next day was told that I would start treatment on the Monday and that part of this treatment would be a drug that would start to shut my ovaries down. The cancer was aggressive in nature and had already spread so there was no time to wait. So no option of harvesting eggs (which wouldn’t have worked anyway because of the cancer) and no option of keeping any of my reproductive organs because my cancer was genetic; the risks were just too high. So in the space of 30 minutes that decision was made and done.

Truthfully, I don’t think I had the capacity at the time to give too much attention to it. The treatment was to save my life, so that was the only priority. What made it harder to digest over time was the fact that I hadn’t yet been thinking about having children at that point in my life anyway. It wasn’t on my radar but then all of a sudden it was, expect that it was there because it had been taken away.

Perhaps because of the priority being to save my life, I found that I actually came to terms with it quite quickly. The way I saw it was that I gave up something to save my life and to hopefully still get to be a mum; just in a different way. I know the thing that I will miss is the experience of being pregnant and I don’t think that this will ever go away; I think you just learn to deal with it.

From very early on in my treatment, I would find myself on the internet looking at adoption stories and videos. I actually still do this. I love watching them because you gain an insight into what an incredible gift it is to open your home and life to children already in the world. I know that not everyone will share the same views, but for me, I look forward to the idea of starting an adoption process in the future and seeing where it will take me. I try to not focus on what I’ve lost but rather on what I’m going gain. It’s weirdly exciting to not have an idea of how or what my family in the future will look like but being on a journey to find it. I have no doubt that it will be emotional and challenging, but also overwhelmingly amazing to hopefully build a family brought together by love.

 

Not being able to have biological children is part of me, as are all the other things on here. But the important point I’m slowly learning is that they are not all of me. I have a cancer journey, but also now have a master’s degree, a career I love, a wonderful family, a great set of friends and definitely the best boyfriend in town. So although easier said than done, the focus for me is going to be on getting good at being me, including all of it, and whatever else comes next.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.” (Martin Luther King)

The purpose of this blog post is to give some insight into what it’s like navigating life after cancer. I’ve often thought of the cancer journey as though it is made up of a series of train rides, each marking a different part of the journey. For me that journey so far has been: the ‘chemotherapy’ train, the ‘surgery’ train, the ‘more chemotherapy’ train, the ‘maintenance treatment’ train and now, since November 2017, the ‘life after cancer’ train.

This blog is made up of a collection of different blogs, which I wrote at different stops that I have to date encountered on the ‘life after cancer’ train. This is something that I will continue to do. I feel that this was helpful for two reasons. Firstly, to help me calm the inevitable anxiety that builds between my check-ups. Secondly, to give some insight into what it’s like on this part of the journey. In some ways I dreaded this bit the most; having less contact with hospital and fewer check-ups means more time to get caught up in my anxieties and fears about what might be going on in my body.

When I boarded the ‘life after cancer’ train, I knew it would be more comfortable than the treatment train because I get to have a seat instead of holding on for dear life, but the reality is that it still comes with its bumps and troubles along the way. Five months on and I have learnt a lot, but there is so much more to learn. Life after cancer is a beautiful thing but it’s also incredibly hard and fragile and to me, the title of this blog describes exactly what it can feel like at times. I’ve decided to share a few entries from the first few months of this year, cancer and non-cancer related, and I hope this can be a useful insight into this part of the journey.

Monday 12th February 2018 – Check-up stop

I found myself back at the Royal Marsden for my first 3 monthly check-up since stopping Avastin in November. I couldn’t quite get my head around how its come around so quickly. Walking up the front steps to the hospital felt very different this time compared with all the other times. I wasn’t there for treatment because Cyril has gone, but I was overcome with a strange feeling of happiness mixed with a horrible reminder that he could find his way back. In some ways it feels harder. This is because the more I take back control of my life and get back into the things which define me, the more I feel I have to lose if Cyril were to come back.

It was a quick visit this time; only one vial of blood taken to check my ca125 and ca153 levels. I’ll be back there again next week for an oncology check-up appointment and to review the results.

Once back home I felt really strange. Reality set in. The blood had been taken so now it was just a waiting game. I felt the familiar signs of anxiety and fear, wanting to cry but trying hard to not. I tried to reassure myself with the knowledge that whatever the results, I’m in the best possible hands and while that worked for a while, it didn’t stop it all getting too much later that evening when I went to fill up petrol. Yes that’s right; I had a breakdown… on the petrol forecourt! I’ve been driving a hired car this week and just the fact that I didn’t know how to open the petrol gauge set me off. I eventually managed to open it but then proceeded to splash petrol ALL over myself (no, I don’t know how either), which resulted in me ending up in tears and calling my dad to drive round the corner to save me from my petroleum panic which was clearly nothing at all to do with petrol.

Once sorted and back in the car I felt calmer. I needed to cry. I’m not quite sure why I was so fixed on stopping myself from crying because I know that it can actually be the thing that helps. As I drove to where I was going, I was able to think more clearly. I was able to talk myself through the three ways the check-up results could go:

  1. Markers and physical examination will be fine and I’ll just go back in three months. 
  2. Marker and/or physical examination will flag up something, but it will turn out to be a false alarm.
  3. Marker and/or physical examination will flag up that Cyril is back.

I need to keep reminding myself that there is no evidence to suggest option three so my job is to focus on that fact. I have felt good since November, my body has been behaving, and I’ve had no symptoms to suggest anything is wrong. So I have to remember that option three is one option, but not THE ONLY option.

Friday 23rd February 2018 – Results stop (and also my birthday!)

Over the past 10 days, I found myself trying to pretend I wasn’t waiting for my marker results; that there was no difference to previous weeks. It helped me get through a few days so I suppose some days it’s okay to pretend.

By the 16th February, I decided to come back to reality and call the nurse to ask about my markers because pretending didn’t seem to be helping as much. I was so nervous to ring; I was shaking, my mouth was dry and although I couldn’t see, I just knew I had a look of terror across my face. My nurse gave me the results which were very much in the normal range and the relief I felt was immediate.

Fast forward to yesterday (23rd February) and I was back in a hospital, this time to see my oncologist. We had a long chat about how I’ve been feeling and he checked my stomach for any abnormalities. All was fine and I was sent away with a new blood test form for three months time. It was the end of an anxiety filled week and although I was able to feel relief, it is never just relief.  The check ups remind you that there is still more to come and that relapse is not just a worry but is a possibility. This is also the case for a  new type of cancer because as BRCA 1 mutation carrier I have always been, and continue to be, at higher risk of breast cancer than I ever was of ovarian cancer. But for now, the risk of recurrence from my ovarian cancer is too high, which means I can’t yet take action with a preventive mastectomy to reduce my risk of breast cancer. It’s a horrible catch 22, but one I have to accept for a while longer.

Today’s appointment marks the end of a week and a half of anxiety and I’m very pleased to let it go. But I also need to remember that anxiety (or Jaws as I like to call her) is not all that bad. Anxiety helps me remain vigilant to signs and symptoms. I don’t want to push Jaws too far away because she was part of what pushed me to get help the first time. So it’s not about trying to not feel anxious, it’s about managing my relationship with it. I need to remember to read this before my next check-up.

Yesterday I also celebrated turning 29. Rather than think of the party or presents, birthdays seem, more than ever now, to be an important mark of all that has happened in the past year. And there has been a lot. Since my last birthday I’m back working full time, I’ve passed my masters and I am due to graduate this summer, managed to continue to be involved with ovarian cancer and BRCA awareness raising events, formed very special friendships and celebrated a one-year anniversary with my boyfriend.  I find it amazing to think back to all these positive things and how lucky I am to be able to list them because the painful reality is that not everyone who goes through cancer gets to do that.

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My friend Sarah Hall and I. Sarah was diagnosed with breast cancer at the age of 27. She is also a BRCA 1 mutation carrier. She blogs about her breast cancer journey. Check out whenthingsgotitsupblog.wordpress.com/about.

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Finding my inner model at the Touch of Teal Glitter Gala.

 

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Getting back into the world of teaching!

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A cute photo of Alex and I!

 

5th March 2018 – Breast check stop

Next stop, breast check-up. This one was fairly quick and no major problems. Good results and plan in place; ultrasound and a mammogram in three months. Mammograms don’t usually happen at my age but it’s now going to a routine be part of my care. I’ve been reading up on them and based on this cartoon it seems like it will be interesting experience…

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Later on in the day, I felt the emotions and tears arrive and soon it felt like my head was going to explode. It wasn’t anything new going round in my head, just the same old scenarios spinning round, mixed with feeling desperate to be able to make the choice to remove my breasts rather than cancer making the choice for me. I often think about what it would feel like when and if the day comes. I’m not scared of it but actually weirdly excited. Although it can be exciting to imagine this scenario, I have to check myself from time to time because this is still a long way off and dependent on lots of things going exactly how they should, mainly me staying cancer free long enough for my team to feel confident to operate, which I know is certainly not a guarantee. The wait is hard. I feel that in some ways I said goodbye to my breasts the day I was diagnosed with ovarian cancer. They still remain on my body but they don’t really mean anything to me anymore. I just have to keep hoping that my body will continue to work well and keep me healthy so that I can one day make the choice I’m longing to make.

 28th March 2018 – Career stop

Today was a big day and for all the right reasons! Work is going well and I have been lucky enough to be part of a project that aims to create an international link with a school in South Africa. Today we got to arrange a Skype assembly; it was amazing to be able to watch the children from both schools start their friendship over the internet! We managed to make initial contact, but the connection wasn’t great so instead we ended up recording our assembly and emailing it across to them. I was buzzing after the assembly. I’m so excited to be part of the project and to be able to encourage the children to develop understanding and awareness of different language and culture, which has always been a passion of mine. Today was another reminder of how beautiful life after cancer is. I felt very lucky and grateful to be experiencing it all with my pupils and colleagues.

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12th April 2018 – A date with the MRI scanner

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Yesterday was the first MRI scan that I’ve had in 6 months (since I came off all treatment). It’s routine now and a way to make sure that Cyril is staying away. I went up to the hospital with my dad and Jaws came along too. And she didn’t behave as badly as I feared she would; at one point I’m sure I even saw her smile. I also managed the scanner much better than I thought I would. After having a substantial amount of my diaphragm removed in surgery, it becomes significantly harder to hold my breath for the required 17 seconds, but after a few attempts and some laughs with the radiographer about it, we managed to get the job done.

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Reintroducing Jaws (my anxiety pet shark).

Today I was back up to the hospital for the results. Jaws and I had a very good morning together. No fights. Until the waiting room that is. We played the less than pleasant ‘ovarian and/or breast cancer scenario’ game and the result was me becoming agitated and anxious. Add on a delay in my appointment time, which my rational side knows is completely normal in clinic, and I was already assuming the very worst… “The results are bad and they’re trying to figure out the nicest way to tell me this.” I finally got called in with all my thoughts being about needing to restart treatment, only to be told that the scan was clear and there was no evidence of cancer. No evidence of cancer; four amazing words that anybody going through a cancer journey longs to hear at check-ups. Although I know that this doesn’t take away the risk of recurrence and also of breast cancer, it’s a milestone that I feel incredibly lucky to have hit. My consultant drew me a diagram that showed the milestones I had already passed on this cancer journey, which made me feel even better because although I have my milestones in my head, I don’t think I had really registered just how many I had already passed. It’s easy to forget some of them but so very worthwhile taking the time to remember and acknowledge them.

Leaving the hospital with good news in hand was a great feeling, and one thing that I’ve learnt about my anxiety is that it affects my appetite but when it leaves, it makes A LOT of spare room for hunger. So I listened to my body and went on an eating spree! Which is very easy to do in the brief walk from the Royal Marsden to South Kensington tube station. It went like this:

  1. A take away Pret a manger sandwich
  2. A portion of chips from Lyon café
  3. An ice-cream biscuit from Snowflake
  4. Half a Palmier biscuit from PAULS Bakery
  5. Two praline chocolates from Jeff de Bruges

Once refuelled and with extra supplies for the train ride home, I felt calm and relieved. The reality is that Jaws is never truly gone but I managed her well today and I am well today. And that is to be celebrated. Just like Martin Luther King said, you have to keep moving forward. It can only ever be one step at a time so that’s just how it’s going have to be.

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One very long tube journey

After giving myself a couple of days to let things begin to sink in I have decided to share the blog that I wrote on my final day of active treatment.

Today is the 8th November. Today is the day that I can officially write the following sentence…I have now completed active treatment for Stage 3 Ovarian Cancer! As I write this I’m smiling, crying, feel overjoyed, terrified, relieved and very emotional. I’m also feeling very full because tonight we celebrated with pizza and a giant chocolate cake. I was even allowed to eat my favourite pizza with minimal mocking from my family about how pineapple should never be on pizza…It’s delicious, don’t judge until you’ve tried.

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Over the past few weeks and especially this week, I’ve been thinking back to a year ago when I started Avastin maintenance treatment. On 7th November 2016, after 18 weeks of chemotherapy and major surgery my oncologist told me that I was in ‘complete remission.’ My dad and I left the consulting room and went straight up to the day ward for my first dose Avastin. It ended up being an especially long treatment day because I also needed an IV of magnesium. I’m not sure my dad and I spoke to each other much that afternoon because I think we were both very much in a daze. I know I was. Then my new routine of three-weekly Avastin began and that’s what I’ve been doing for the past year. It was incredibly hard to adjust to because up until then I was used to being at the hospital every Monday for chemo, which meant that I got to have my blood markers done, see the team and feel very reassured. I really didn’t want to loosen my grip on my safety blanket. On 8th November 2017, I had my last Avastin and coincidently found myself sitting in the same chemo chair (number 20) I had my first chemo session a few days after I was diagnosed. As we left the ward I felt overcome with emotion. When I looked back at the empty chair my mind was spinning. I thought to myself. Will Cyril stay away? Will I ever need more treatment again? I know these questions, worries and fears so well now.

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About halfway through my Avastin journey I had what felt like a big bump in the road. My CA125 (the blood marker that’s used for ovarian cancer) went from 12 to 24. A CA125 of 35 or under is considered normal, so although mine was very much still in normal range I panicked. I was always told that markers are never a certainty and to not place too much focus on them, but that’s not always easy because markers become the one thing that is fixed in a very unclear situation. I remember how terrible I felt and all the horrible thoughts that occupied my mind. I found myself thinking and reflecting about what I had been through. For the first time since my diagnosis, I found myself thinking about just how different things could have been. It was also in part because of my worries about Avastin ending and ultimately my fear of Cyril coming back.

I would love to say that this is something I can learn to not be affected by but the truth is I can’t. I know that these worries will always be there, and I can’t stop that. However, I have to learn ways to try to accept and deal with them, which I know is going to take time. One of the ways that I’ve been trying to do that is by trying to become friends with my anxiety. She is a shark called Jaws.

Avastin has not been easy this year. It’s not exactly a chemotherapy drug so the side effects are overall less intense but there are side effects for sure. There’s been the continuous body ache, headaches and random bouts of nausea. It’s hard to get used to having these for a year, but when you know that you are being injected with something that is helping to make extra sure that Cyril does not creep back in, it becomes easier to put your arm out for the cannula each time. And over time you learn to cope with the side effects. Now that I’ve finished Avastin, these should stop for the most part, but the added question mark is how much was due to side-effects and how much is due to menopause which can also cause headaches and joint pain along with a whole host of other things. So now we wait to see.

I am obviously overjoyed to be a step further along now, and I’m sure my veins are eternally grateful for the chance to be left alone for longer than 3 weeks at a time. If I’m being honest, at the moment it feels like follow up will be harder than active treatment. I think this is because when you go through the treatment you are in survival mode and not really thinking about what’s going on. For me, this kept Jaws on lockdown to a certain extent. Post treatment and follow up means I’m further away from the war zone I was in, so Jaws feels like she can break free, circle round me as much as she wants and make me feel more vulnerable. I know that help is always there when I need it, but as I start to get my head around 3 month rather than 3 week check-ups, Jaws is finding it much easier to give her two-cents about the current situation. Here’s what she tells me:

“Three months is a long time to go without seeing a doctor Laura.”

“Lumps and bumps you find along the way might mean Cyril is back.”

“Breast checks and ovarian checks for you every three months.”

“You might have an ovarian cancer relapse. This could impact when you get to have your preventive breast surgery.”

“You might even get breast cancer before you can have preventive surgery. The risk from your BRCA gene mutation is still there.”

“You’re in early menopause Laura. An early menopause puts you at high risk of heart disease and osteoporosis.”

 Of all these, the only one I actually want her to remind me of is number two. She’s correct in saying that lumps and bumps need to be checked out and I’m actually thankful that she reminds me to be vigilant. After all, Jaws helped me last year because when doctors told me nothing was wrong, she pushed me to not accept what I was being told. Anxiety is not always negative. As for the other points they are all true. And they are not things I can tell myself to not think about because that’s an impossible ask. But what I do need to do is find a way to not get caught up in them, and to remember that I know a lot more about cancer and my body than Jaws does. I also know that close monitoring and support from the Marsden is going to help me adjust to this new phase of the journey.

However, sometimes it’s not as easy as reminding yourself of the facts. For example, last weekend I found what I know looked like a boil near my scar. Panic quickly set in and I told myself the following facts on repeat:

“It’s just a boil. You’ve had loads before. It looks and feels like a boil. IT MUST BE A BOIL!”

But as much as I told myself these things, I quickly worried that it was a cancer related lump. It’s not just the thoughts that are a problem; it’s also a physically exhausting pattern of thinking. It had me lying on the sofa too tired to talk in no time. Cancer can make you lose faith in your body and it takes time for that faith to be rebuilt. In time I’m sure that Jaws and I will learn that it’s always best to get lumps and bumps checked out, BUT that there will be lots of times where these lumps and bumps are just normal lumps and bumps of life and not cancer related. I can’t guarantee this will always work but it’s a start.

I titled this blog ‘One very long tube journey’ for a reason. Since my diagnosis last June I have made the same trip on the Northern and Piccadilly lines to South Kensington station so many times I couldn’t begin to count. When you sit on a train, and the same train lines for as many hours as I have over the past 18 months you hear, “The next station is” so many times that you can replicate every the voice perfectly. You also get to know the length of time between each station and the points in the track that bump or curve. I can even tell you that the bumpiest part is between the Knightsbridge and South Kensington stops. Remember this next time you’re going that way and see for yourself!

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Battling Cyril is not all that dissimilar to a very long tube journey in London with lots of stop along the way. For those of you who know the tube, it’s rare that you only ever need to take one line to get to your destination. For a year and a half I’ve been on the ‘treatment line,’ getting off at regular stops along the way. This week, I came to the end of this line, and I had to walk to another platform and wait to board the ‘Life after cancer’ line. Getting off the treatment train at the final stop was really hard, but I managed to get myself on the ‘Life after cancer’ train.

How does it feel? Well I feel relieved, thankful, elated, very fearful and very emotional. I have no doubt it will be a bumpy ride at times, but I know I have people to help. This train feels better in some ways because I get to have a seat rather than stand up and hold on for dear life. I can use my hands to do other things now. Like keep writing my long list of the things I want and need to do as a stage three ovarian cancer survivor. When I look at this list I often find myself hesitant to start working through it because it terrifies me that I might start and then have things ripped away from me again. The fear of needing to swap back to the treatment train is real and it’s not going anywhere. I just have to learn to deal with it, and I know that Jaws has to come along for the ride. For now I’m just going to take it one stop at a time and deal with whatever this train brings. I’ll learn as I go. That’s the best thing I can do. There’s no manual for being on the ‘life after cancer’ train.

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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 – Food, fun, and fundraising!

On Sunday 9th April, I hosted BRCAfestmy first fundraising afternoon for the Royal Marsden Cancer Charity. The aim of the event was to raise awareness about BRCA gene mutations and ovarian cancer, as well as funds for the Royal Marsden cancer Charity. It was an honour to be joined by Mr John Butler, Consultant Gynaecological Surgeon at the Royal Marsden Hospital. Mr Butler and his team carried out my surgery in August 2016.

 There was a lot of preparation ahead of the day, and even more so on the morning of the event. I had some great helpers with me and it didn’t take long for it all to come together: we had amazing decorations, food and raffle prizes that people had so kindly donated. After a few hours of work, it was amazing to see the room ready for the event – I was so excited by that point! 

 The afternoon started with a chance for everyone to eat, drink and meet others. There were also lots of things on sale including some handmade cards and keyrings, as well as raffle tickets and auction prizes. Once everyone was seated I welcomed everyone and gave a short speech. I had been so nervous about the prospect of talking to a room a full of people. I think that blogging and talking about my experience has really helped me feel confident talking about cancer and my journey, but where public speaking is concerned, I’m used to talking to a class of children rather than a room of 150 adults using a microphone! Although, once I started to talk, my initial nerves disappeared and I actually ended up enjoying it.

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After my speech, Mr Butler presented a talk about the history of, and developments in, cancer and specifically ovarian cancer. He also spoke about BRCA gene mutations and the research and development that the Royal Marsden is doing in these areas. I learned so much from the talk. For example, about the developments in ovarian cancer treatment and drugs. While Mr Butler was talking, I remember looking around the room and seeing everyone so engaged, and I was so pleased to have played a part in raising awareness in this way. Mr Butler coincidently ended his talk with the same ending line as my speech – “knowledge is power,” which was great, as it was what I had hoped the main take home message of the day would be.

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 After Mr Butler’s talk, we held the raffle draw and auctionIt was so exciting and such a joy to see people win the amazing prizes that had been donated. It was at this point I had another really good look around the room to soak up the atmosphere and remind myself what all the hard work preparing had been for. I also couldn’t help but think how good it would be to do this again. And when I get an idea in my head, I tend to keep going with it, so watch this space for details of BRCAfest2018! 

 As soon as we had cleared the hall, a few of us sat round and started to count up the money we had raised. I am so excited to say that the grand total raised by BRCAfest was £5,402.17! This figure is just incredible, and it is so overwhelming to think about all the support that people have given in order for us to raise as much as we did. 

 Clearing up BRCAfest meant taking home A LOT of leftover food and when I saw just how much cake was left over, I instantly knew what I had to do. As I told everybody at BRCAfest, my medical team have been like my second family through treatment, and so I wanted them in some way to be part of the event. The next morning, I booked myself a cab and headed up to the Royal Marsden to deliver the cakes to some very special people who have, and continue to, take incredible care of me. They helped save my life and so giving them cake to have with their cups of tea on a Monday morning was just a small thing I can do to remind them all just how special they are to me. 

 I would like of say a huge thank you everybody who attended BRCAfest and those who donated gifts and food. And a special thanks to the children at Deansbrook Primary School and Little Reddings Primary School for making cards and keyrings that were on sale, to Fiona Cohen for afternoon doing her drawings for us and to Georgine Waller for capturing it all on camera. A big thank you to Hartley Hall for donating the venue for the event and finally to Mr Butler for being our guest speaker. 

 BRCAfest happened ten months to the day of my diagnosis, so on a personal note it was another celebration of how far I have come in such a short space of time. I often find it hard to make sense of just how much has happened in less than a year. I feel like a different person, and in many ways, I am. Photographs and images are an amazing way of capturing moments, good or bad but also for making sense of change. The photo on the left is from 9th June 2016 when I was on my way to see Mr Butler for the results and diagnosis, and the photo on the right is of me and Mr Butler at BRCAfest. To me these capture the same person, but also highlights some of the differences I see in myself.

 Now that the event is over, there are lots of things I need to focus on over the coming weeks. I have my Avastin treatment as well as my three monthly ‘breast MOT to check that my potentially killer mutant boobs are behaving themselves, and are only (thanks to the menopause) guilty of increasing in size…which I don‘t class as a real problem! I will also be taking a big step at work and getting back in front of a class of children to teach my first French class since May 2016. There is lots to come over the next few weeks, but the enjoyment and success of BRCAfest has definitely helped to set me up positively for it all! 

All photographs from BRCAfest 2017 can be accessed using the link below:

https://myalbum.com/embed/dMbZX2sppe0k

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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BRCAfest update!

On 9th April, BRCAfest is taking place in Mill Hill. As well as having our raffle, we are also going to be having an auction on the day.

We have wonderful auction prizes.

1) accommodation for one week in Quinta Do Largo in the Algarve

2) a signed goodie from Jessica Ennis

3) two signed framed framed football shirts. One by Gareth Bale and the other by Juan Mata.

To be in with a chance to win these incredible prizes buy your tickets for BRCAfest now! Use the link below to purchase your tickets.

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

Remember this event is going to spread vital awareness of BRCA mutations, hereditary cancers and the incredible work that the Royal Marsden does.

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Happy birthday to me!

Today marks my 28th birthday and so it feels like an appropriate time to update Finding Cyril with a new blog. A lot has happened since I found that I was in remission on 16 November 2016. I have adjusted well to my three weekly Avastin treatments, I have started to go back to school, I feel able to go out and do more things, and as a result, have met some really lovely new people. It goes without saying that I have good and bad days. And then there are the days when I can experience what feels like every emotion under the sun in the space of a day. 

 It is hard to put into words what I am feeling on my birthday this year. It’s a real mix of emotions, thoughts and feelings. I thought I would try my hand at poetry as a way of expressing some of it. I’m no poet but here goes!

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The thing that comes to mind most of all today is how grateful I am to my team members who are helping me in my current boxing match with ‘Cyril’ (the match where the goal is to remain the champion). My team includes: my medical team, my Avastin treatment, my family and friends, my dog Oscar (concerning that I’ve just realised he has not been mentioned in this blog thus far), Chai Cancer Care and every person who has and continues to support Finding Cyril raise awareness and funds for the incredible Royal Marsden. Thank you all – you really have made this birthday one I’ll never forget. 

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