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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‘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. I’m so thankful that you were by my side through treatment, I am 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.

 

 

 

 

 

 

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:

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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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Make time for tea!

On Tuesday 28th February, I was very privileged to attend the Eve Appeal’s launch of their March 2017 campaign: ‘Make Time for Tea.’ It was held at the House of Commons and I went along with my dad for a very special afternoon tea.

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From the moment I walked into the room, I got a sense of how important this event was going to be. The room was filled with: ovarian cancer survivors, patients who are still undergoing treatment for ovarian cancer, families who have lost loved ones to the terrible disease, and MPs and celebrities who are in support the Eve Appeal and their efforts to raise awareness of, not just ovarian cancer, but all gynaecological cancers. The focus for this event was ovarian cancer because March is ovarian cancer awareness month.

Athena Laminios, Chief Executive of the Eve Appeal,was one of the first people to speak. Her talk focused on the importance of us all talking more about gynaecological cancers to raise awareness. We as women can often end up avoiding conversations about our bodies, and especially our vaginas, because we end up feeling embarrassed about it. Athena highlighted how we must all try to not shy away from talking about these issues just because it can sometimes feel uncomfortable. It highlighted for me just how important it is to allow these conversations to happen, not just between us, but also in our wider society.

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We were also honoured to hear from some inspiring women about their personal experiences of ovarian cancer. Alison, who is an incredibly special woman and a huge inspiration to me, spoke about raising awareness of BRCA mutations and ovarian cancer. She has been, and continues to be, there for me since my diagnosis, and was one of the first people I spoke to when I was diagnosed. She immediately understood what I was feeling without me even having to say much. It was humbling to hear her talk about her personal cancer journey and determination to raise awareness about this important topic. I am so thankful to have such support, guidance and love from Alison and her family.

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I spoke with other women like Alison who have lived with ovarian cancer. One woman I met told me how for many years, she lived in fear of cancer, but now over time, feels free from this fear. It was so reassuring to hear from her; like all of the women I have met, hearing about her experience gave me hope and encouragement.

I also met a number of celebrity supporters of the charity, including Dr Christian Spencer Jessen and Lesley Joseph, as well as a number of MPs. It felt so special to talk with these people about my personal journey as well as the wider issues relevant to ovarian cancer.

I wanted to write a bit more about what Athena mentioned in her talk; the importance of us talking about our bodies and gynaecological symptoms. I identified so much with this when think back to my own experience. Back in May 2016, I got terrible tummy cramps, which seemed strange to me because I had already had my period that month. I remember noticing other new symptoms after this and initially, the only reason I kept asking my GP about whether it was to do with my ovaries was because of where the pain was, not because I suspected it was cancer. Back then, I had no idea about the symptoms of ovarian cancer. However, as the symptoms and pain continued, and I started to search the internet, I began feeling more uneasy about what the health professionals were telling me and so I kept going back. This is one of the reasons I decided to start blogging; I truly believe that knowing the symptoms means that you can be more aware of when things don’t feel right in your body. If I have learnt anything from my experience of diagnosis, it is that you know your body the best. I also feel strongly about raising awareness of ovarian cancer amongst women of all ages. I stress ‘all ages’ because although rare, ovarian cancer can still occur in younger women, like it did with me.

So the take home message for me from the event was for us all to try and be more comfortable with talking about our bodies, our vaginas and gynaecological symptoms. If we can try to have these conversations more openly, then we can continue to make it normal for women too talk about when things don’t feel quite right and subsequently get things checked. One of the most terrifying facts about ovarian cancer is that it is often diagnosed in its latter stages, and usually once the disease has spread. The symptoms are often the same as conditions such as irritable bowel syndrome or pre-menstrual syndrome. You can read more about this on the Eve Appeal website.

In aid of ovarian cancer awareness month, the Eve Appeal is asking everyone, women and men, to sit down for tea and start having these vital conversations about ovarian cancer, whilst also raising money for the cause. Have a look at the link below for more information.

So put the kettle on, slice the cake and let’s start talking!

Links and info:

  • Oliver Bonas have teamed up with the Eve Appeal and for the next two years, will be supporting The Eve Appeal through the sale of a number of products. All their profit will go to the charity, including all the in store carrier bag sales. https://www.oliverbonas.com/about-us/charity

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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