Tag: FindingCyril

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Living Life On My Cancer Train

It’s been a while, Finding Cyril. Some might find it strange that I am back after such a long time away. But I never went away. As you progress on your cancer journey, what you want to say, and when you want to say it, changes.  A cancer journey never stops, rather you enter different phases. After swapping over from the ‘general life train’ to the cancer train on the 9thJune 2016, I realised that once you board, you do never get to permanently disembark. Instead, you are forever evolving and growing in the cancer world as you visit different stations.   

Since my last check in, so much has happened. I almost don’t know where to begin. 

Wedding Station 

I became Mrs Samuels (AKA Mrs Samosa). I will officially give my hubby a shout out on here for his ingenious merging of our names and my heritage. Once revealed in his wedding speech, we were never going to be known as anything else. 

COVID 19 Station and becoming pug parents 

Soon after our wedding, Covid came crashing down around us, driving me into 10 weeks of shielding due to the preventative medication I take. It is a period of time that I don’t really like to think about because of how challenging it was mentally and physically not to venture out the house, even for a walk. I recall a day where it got too much and I eventually had to go for a walk because it felt like my head would explode. I recall walking in open fields with my husband. Breathing in fresh air had never felt so good after feeling like a prisoner in my own home. During COVID, we also became pug parents to the the cutest fluff ball called Stanely!

Mastectomy Station 

Between the two lockdowns, I found myself back in hospital for surgery. This surgery was a choice. It was me taking control of my breast cancer risk – something I had wished and waited for ever since I got diagnosed with ovarian cancer. Sometimes I can’t quite believe it actually happened. Whilst it might be hard to believe, I didn’t find this hard to do. Scary to have surgery, sure. Worried about removing my breasts? No. To me this was a way to live each day a little easier. I knew that after the operation, I would wake up knowing that the risk of ever sitting in a chemo chair for breast cancer was minimal. It was not possible due to COVID to have a farewell boobs party but Alex’s wonderful friends Rosie made the amazing cupcakes in the image below to celebrate the surgery. Post surgery, I had moments of sadness when I thought about the breasts I lost; my chest felt alien to me and feelings of regret set in. But it didn’t last long. Quickly, they became part of me. I’m proud of my new breasts. To put it bluntly, they don’t have the chance to kill me like my old ones. Whilst I still have to contend with the ovarian side, I don’t have to do so with my breasts, and that is a huge relief for me. They get checked once a year. And they are starting to feel so much a part of me that I knew recently when one felt different and needed checking. Thankfully, I passed that check with flying colours. 

Adoption station 

Around this time Alex and I embarked upon our adoption journey with the love and support from family, friends, medical teams, and social worker who is an important part of our lives. It will never be possible to put into words just how much everything she has done, and is continuing to do, means to us. It took 2 1/2 years to become approved adopters and now we are just waiting for the right match. As we say, right child, right time.  It’s far from an easy journey, but we wait with anticipation and excitement to meet our future children. We want our adoption story to give other cancer patients hope; both Alex and I had cancer in our 20s and lost our fertility to cancer. I have my up and downs when dealing with the fact that I will never be pregnant. I think that it is important to acknowledge that it still hurts seven years down the line. But I put my focus onto the search for the child that was meant to be part of our beautiful family. When that day comes, I know I will feel all of the things that a woman feels when they are pregnant with a child. I do not want people to treat me differently because I can’t have children. I guess I just want people to know how hard it is to face how cruelly that got taken away from me. I know this is something Alex would echo from the perspective of man who had his fertility taken by cancer.  If anybody reading this wants to ask about adoption or about adopting and cancer, we would love to support in anyway we can.  

Cancer Scare Stations

Sometimes my train stops suddenly in tunnels mid station. These are not good moments, and you have no idea how long you will be stuck. I had this two summers ago when my cancer markers rose. There was a likely explanation to this, because I had a horrendous cough. I recall sitting by the water in Bourton-on-the-Water when I spoke with my consultant on the phone. It seemed unfair, cruel and unjust. I was left wondering why cancer felt the need to follow me when I was away for a few days with my husband. What followed was a couple of weeks of anxiety, pain, tears and immense mental and physical exhaustion. And it was not just me who felt that. My family endured it too, as they did their best to hold me up. It was exhausting to try and pretend to be okay, but also exhausting to be living in a constant state of fear. I remember like it was yesterday breathing a sigh of relief when I found out it was all okay. I had more of these recently when fainting spells sent me into a continuous state of worry and fear that I ended up experiencing panic attacks. In swooped the Marsden to get me back on the train and to a better station.  

Honeymoon station! 

It took three extra years. But Mr and Mrs Samosa headed off to Vancouver, Seattle, Alaska and San Diego. A dream come true. A holiday that was worth the wait. This was the furthest I have ever travelled sine my diagnosis. I was really nervous because I had my medications to contend with in a different time zone! But it all went smoothly and proved to me that I can do these things. A cancer diagnosis cannot stop us. It gave us the travel bug and I cannot wait to start ticking off more places on our holiday list.

  

Bone Density Station 

As I entered the menopause world at the age of 27, my consultant keeps a close eye on my bone density. I have DEXA scans to check my bones every two years. As expected, my bone density has continued to decrease. I am now contending with osteopenia in my pelvis and osteoporosis in my back. My consultant swiftly came up with the plan of action to help this. I now take a 6 monthly injection called Denosumab, daily vitamin d and do regular weight bearing exercise. I am determined that the next time I have to get off at a Bone Density station that my bone density would have improved. I think of these issues as my super-power. There are not many women in their early 30s dealing with this, as highlighted by the fact that the nurse who gave me my last injection had to explain my history to the student nurses who were confused why I was so young and having this injection.  

Teacher Stations 

I have had the chance to experience some wonderful teacher stations in between regular cancer related ones. I have become Mental Health Lead in school, which has enabled me to complete some interesting training to support my school in this area. This includes senior mental health lead training and youth mental first aid. I am thoroughly enjoying my role and making changes to support the mental health and well-being of pupils and staff. I think this interest comes from the battles I have endured on a personal basis because I have had to and continue to work even harder to maintain positive mental health and well-being. I love my job. I work full time and nothing stops me. I hope to continue progressing in my career. I want people to take to take from this that there is life after cancer, and life whilst living with cancer.  

Alumni of the Year 2020 

Due to COVID 19, I had to wait longer than planned to receive this amazing award. Nominated by two very dear friends, my old university acknowledged the fundraising and awareness raising that I have done since being diagnosed with cancer. What a day it was! Lunch with the vice chancellor and pro vice chancellor, a chance to address students graduating, and chance to be back in a place where I spent four glorious years. That award gave more drive to continue raising awareness and funds for the Royal Marsden. And I like to say that that award was everybody who has and continues to be part of my Finding Cyril army.  

The Finding Cyril Fund is growing 

My dad and I have a post 6 monthly scan ritual. We walk home from the Royal Marsden on the Fulham Road and there is a compulsory stop for cake in Maida Vale. My nine-year-old nephew joined us for the most recent of these walks. His bravery and determination has raised nearly £2000 that has been added to the Finding Cyril Fund, taking me closer to my dream of £20,000. This money goes directly to the Gynaecological surgical fund. To say my dad and I were bursting with pride that day is an understatement. This formidable little boy took to social media and explained each step of the way why people should share what he was doing and donate. He touched the hearts of a beautiful family outside the Marsden on the morning of the walk, and somebody who worked at the Marsden took the time to show him specialist machines and operating rooms. But he could not know just how much he helped me to get through that day. He reminded me that Finding Cyril needed an update, and that I must get that fund to, and hopefully beyond, my goal. So here’s a shout out to the one and only Raphael. I look forward to sharing that experience with India-Rose and Ariya. My two nieces are determined to become part of the walking army.  

Menopause station 2.0 

If bone density problems where not enough, I was forced to leave the train at another menopause station recently. This was due to another not so nice side effect of menopause… Vaginal atrophy. This is one that we might not want to talk about but it is important to open this conversation. I put up with it for nearly seven years. But it got too much recently. I was too uncomfortable not to take action. It was making me feel low and miserable. My consultant has told me for a few years now about how I could use vaginal oestrogen as only a small amount is absorbed into the system, but I felt that I could not do it. To me oestrogen was the devil. It fed my cancer. It made it violently take hold of my body. But my consultant was right. I would know when it was the right time. And I would say to anybody in my position to only do it when you’re ready. A few months back, my head would not have been right. I would have done it and then second guessed myself the whole time, fearing for the oestrogen would cause problems. By doing it when I was ready, I haven’t looked back. Instead, I feel happier, more comfortable, less pain, more like me, and just a little less angry at the menopause. It also made me feel a little younger whilst my body navigates something it should have not needed to do whilst I am so young. Another shout out is needed to my sister for her clever idea of toothbrush holders to keep reusable applicators in! There are many more menopause stations that I will be forced to stop as I progress on this journey, but I am blessed to have an amazing medical team behind me, picking me up and helping carry me at these times. Something as simple as recommending magnesium spray at night time has helped me sleep a little better.  

Scan or no scan, that  is the question…   

I had a recent medical stop that went very well. My oncologist spoke to me about how consistent my CA125 has been, and all my scans have been clear. She is happy for me to have a scan once a year. However, she feels it is important that I make this choice. So a scan is scheduled for the end of June but she is happy for me to change this. Do I know what to do? No. Is this a hard one? Yes. Part of my brain likes the idea of not having the build-up to a scan; the intense feelings of worry and pain. But part of me likes then having the reassurance of the scan – knowing that my body is okay, and is fighting to keep me safe and well.  

So that’s me. That’s what my cancer journey looks like right now. I hope to have shown the highs and the lows of living life here. Do I sometimes wish I didn’t have to live this way? Yes. But that is not healthy. This is me. This is my life, and I will continue to embrace it through any stop I have to contend with. And I will continue to be open about all the feelings this brings me.  

I hope this blog helps people to see that the struggles of a cancer diagnosis never really leave you. Whether you remain on treatment or not, they just change. I am approaching seven years since my first diagnosis. I am thankful to be free of cancer and with an amazing medical team behind me, keeping me well and helping me live. I hope this blog helps others to see what might be going on beyond what somebody living in the cancer world lets you see. It is all about coping. In the words of a little boy to his very loveable bear… 

“You’re braver than you believe, stronger than you seem, and smarter than you think.”  

“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)

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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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Ca125… I think we should just be friends

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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

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“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!

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On Sunday 9th April, I hosted BRCAfest; my 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 auction. It 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

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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!

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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

Happy birthday to me!

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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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Angels in comfortable shoes

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

 Diagnosis

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

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 Chemotherapy and day treatment unit nurses 

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

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 Inpatient ward nurses 

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

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

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Clinical Nurse Specialist 

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

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

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

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Be BRCA aware

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 I remember the day when I answered the phone and received the news that I carry the BRCA 1 gene mutation. It is a really clear memory for me. I was midway through marking my Year 5’s reading comprehensions. Hearing that I had tested positive, somehow felt as though I’d been told that I had cancer. I didn’t know quite what to think or how to feel. What I was sure about though was that I couldn’t wait until I was 30 to start screening my breasts; I needed to do something proactive straight away. So I took control. I started to have my breasts screened every six months and my ovaries and CA 125 level checked once a year. I only ended up having this check of my ovaries once before I was diagnosed with ‘Cyril.’ Below is a photograph of my siblings and I. I am the the only who inherited the BRCA 1 mutation. 

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I never ever imagined that I would be diagnosed with ovarian cancer at 27, because all the statistics indicated that, even with the BRCA mutation, the risk of ovarian cancer only increases later on in a woman’s life, usually past the age of 40. I think this was part of the reason why I held a lot of anger towards my body when I was diagnosed. I let go of some of this anger when I discovered that the BRCA 1 mutation would actually be one of the things to help me fight ‘Cyril.’ When I was diagnosed, my oncologist told me that patients with a BRCA 1 mutation are often more sensitive to platinum-based chemotherapy. 

Throughout my journey with ‘Cyril’ so far, one of the most important things to me has been raising awareness of BRCA, the testing process and the chance to take preventative measures. After the initial shock, learning that I carried the BRCA mutation for me very much felt like I was in control and that ‘knowledge is power’. In keeping with this idea, I wanted to share an article that I read a few weeks ago in The Jewish News. 

The article was about The Venus Project – a photo exhibition that is a joint collaboration between BRACHA (an Israeli charity focused on raising awareness about Hereditary Breast and Ovarian Cancers), British artist David Scheinmann and London based curator Tamar Arnon. The exhibition aims to raise awareness of hereditary breast and ovarian cancer, BRCA testing and the ways to reduce the risk of these hereditary cancers. I have included a description of the exhibition below:

“The exhibition shows 20-30 photographs of different sizes, two video installations and a book featuring healthy BRCA mutation carriers, previvors – healthy carriers who underwent risk reducing surgeries, young breast cancer survivors, a man who is a BRCA mutation carrier and two women with ovarian cancer – one of them, Sigal, has sadly passed away 6 months ago.”

The exhibition is a really unique and beautiful way to remind BRCA mutation carriers that ‘knowledge is power.’ I’ve put a few images below taken from the Scheinmann’s website: 

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To see more images from the exhibition have a look at the the artist’s website:

http://www.davidscheinmann.com/photo/works/Pages/The_Venus_Project.html. 

Reading this article led me to want to find out more about what the Royal Marsden has does within the field of BRCA testing (I had my testing done over a year ago and through another genetics service). 

The Royal Marsden have developed a pathway that aims to ensure that more breast and ovarian cancer patients are able to get BRCA genetic testing at the Royal Marsden, rather than needing to be referred to a separate clinic for this. Increased access to testing also means that family members who may have inherited the genetic mutation can then also get tested and have the chance to make choices about their bodies.

The Royal Marsden Translational Genetics Laboratory has also been a crucial development within the field of genetic cancers. It allows cancer patients to have access to the latest genetic testing, providing greater understanding about their cancer and therefore allowing for more individualised treatment plans. Genetic testing remains restricted due to cost and the resources needed, so at present, the focus is on breast and ovarian cancer patients because of the known high prevalence of causal genes (i.e. BRCA), which can determine effective treatment. However, the eventual aim of this work is for all patients at The Royal Marsden to receive a genetic test as part of their diagnosis. A significant part of the funding for the laboratory came from supporters of The Royal Marsden Cancer Charity. 

Knowing about BRCA mutations means that that more and more people can then make choices about their bodies and health, for example with the options of surveillance or risk reducing surgery. For me, knowing more about all the pioneering work that is going on at the Royal Marsden adds another layer of importance to those images from the Venus Project exhibition. The images of the BRCA carriers showing scars following cancer surgery is such a poignant reminder of how important it can be to know about your BRCA status at the stage of diagnosis. Equally, the images of previvors (healthy carriers who underwent risk reducing surgeries), are also a reminder about how, thanks to pioneering research, more and more women are having the chance to take control of their health and make decisions about their body before cancer does.

On my cancer journey so far, I’ve had to come to accept that unfortunately ‘Cyril’ was probably always going to be part of my destiny. However, I feel so very grateful that I was already aware of my BRCA status when I was diagnosed. It meant that in some way I was able to hold onto a tiny thread of control in what was a very ‘out of my control’ situation. It also meant that my team had the best understanding they could about my cancer and that my treatment plan was made with this in mind. I feel so proud to know that centres such as The Royal Marsden and others across the world are working hard to ensure that genetic cancer research is on-going and that more and more individuals can have the chance to be ‘previvors’. 

pink_and_teal_ribbon_heart_sticker-r55d9af1e50d94500811e28ef8165089c_v9w0n_8byvr_210Details about The Venus Project Exhibition:

The Venus project will travel to the UK and the US from the end of this year. I will update the blog with more details as they are published.

• http://www.bracha.org.il/Files/File/venus.pdf

• https://issuu.com/jewishnewsuk/docs/jn981 pp.20-21