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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.”  

Laura: A year (and a half) in the life

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It has been a while since I felt like I wanted to put pen to paper and write a blog post. Since my last post I’ve tried several times but always found myself stopping. But now I feel ready; I’m not sure whether it’s all the thinking time, courtesy of lockdown and shielding, or whether it’s just taken this much time to process all the things which have happened over the past year and half. So here goes:

Way back in October 2018, Alex made me the happiest girl on this planet when he asked me to be his wife. I remember the moment clearly. In an instant, the pieces of my life puzzle seem to move and fit together, and that final missing piece slotted into place. And after that I seemed to be able to see and experience so many good things, including being nominated for a Pride of Britain of award! I remember towards the end of 2018 feeling a sense of calm and happiness at how things were going. For any other Gilmore Girl fans, the best way I can describe that feeling is how you imagine Lorelai is feeling when she is surrounded by the one thousand yellow daisies. Life was going well and I felt surrounded by daisies. I didn’t think anything would get in the way of that.

Alex and I spent the start of 2019 learning what it involves to plan a wedding and all the joy (and stress!) which comes with this. Then April 2019 my routine scan picked up a possible sign of cancer recurrence, after me having just hit the milestone of two and a half years cancer free. Hearing my oncologist say that there was something they were concerned with on my scan felt like an immediate crashing down of everything I’d been doing and experiencing since remission. I remember feeling just so angry about how unfair life was. I had been letting myself believe that I had found my happy ending, and now here I was about to have to try to dodge yet another curveball. It also caused a lot of feelings about my body to resurface; I once again started to look at my body with distrust, anger and sadness. It had let me down again. 

One of the biggest things which I started to struggle with after hearing the news, was how this would be putting the brakes on my hope and plan to move forward with preventative mastectomy surgery. From the day I was diagnosed back in 2016, I’ve wanted to have the surgery as soon as it was possible to. I had already said goodbye to breasts once I knew the risk they came with; for me they were no longer a part of me but just things on my body which didn’t carry meaning anymore. I wanted to be able to take control of my increased breast cancer risk, rather than allowing BRCA and cancer to take that choice away from me yet again. I had made my peace with having to wait for surgery until it was considered safe enough after my diagnosis and treatment. But now, coming to the realisation that I’d have to wait even longer, really hurt. It was like a giant punch to the stomach when I was already down on the floor.

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What came next was a horrible 6 weeks of ‘watch and wait’. The scan had indeed picked something up but it wasn’t yet clear enough what that was. Possibly areas of scar tissue from my previous surgery, possibly something benign and unimportant or possibly something not good. So the decision was made to watch it and see what happened. It was exactly how you can imagine a six-week wait would be. Horrendous. My family and friends tried as much as possible to keep me busy and distracted with whatever they could think of. Possibly the best one was when Alex and my siblings planned a family trip to a piercing shop so that they could all get piercings while I watched them yelp. It helped. But as with most forms of distraction it does just that; distracts for a bit but doesn’t stop the fear, because it can’t.

During that time, I had to relearn a lot of what I had learnt the first-time round with how to deal with the really bad days, and that it was okay to feels these horrible emotions. I also had to remember that, although I was angry at it, my body had looked out for me again,  because, although small, these were early signs. After the wait, the decision was made to biopsy what was showing up. So a few weeks later I was back in a hospital gown for a small surgery with the aim of taking out whatever it was…or as I chose to refer to it, Boyd the tumour. After a few hours Boyd, who was sitting behind my bowel, was removed. The results then came a few days later and Boyd was indeed confirmed as a 1cm tumour, containing some recurrence inside him. Thankfully, all evidence of disease was removed with him. After discussions with my team we all agreed that the best next step was preventative chemotherapy before starting on a PARP inhibitor; a daily tablet treatment which is showing to be an effective maintenance treatment for women with BRCA gene mutation related ovarian cancer. 

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In June 2019 I got myself ready to get back in the chair for six more cycles. I struggled with the fact that chemotherapy had to begin around the time of the lead up to my wedding and that I would be between cycles on my wedding day. I couldn’t help but think that felt so incredibly unfair. The drugs I had this time round came with side effects but the hope was that they would not be as intense as last time. I focused on putting myself back into survival mode decided that chemo was not going to stop me. I worked all the way through treatment, had my hen party, and even went to Paris for the weekend. My team worked through my treatment dates with me to make sure that all the things I wanted to be able to do could still happen around it which I was so grateful for. It means that, although not always ideal, the lead up to the wedding and the day itself was the leading star of the show, and chemo was the small sidekick. Certainly it meant needing to make some amendments to the typical ‘pre-wedding excitement’, like having to wait until four days before the day to have my wedding dress altered to allow for treatment weight gain or loss, and rather than ordering champagne to the hotel room the night before my wedding, my siblings ordered salt water to try to deal with my ulcerated mouth; not quite as tasty, but certainly more helpful!

All of this led to a day that was all I could have hoped to it to be, and more. Monday 26th August 2019 will always be etched in my mind as my wedding day and cancer didn’t even get a look in. Any side effects were masked by all the love and happiness in the room and I found myself looking at the situation in a very different way instead of focusing on how unfair it all felt. Instead it was the day Alex and I show the world that there is life during and after cancer. We have a powerful story to tell. It’s a story of hope, courage and faith and we will never stop sharing it. We want our cancer diagnoses and how we overcame them to be a source of support and guidance for others having to swim through these choppy waters. 

After the wedding I got ready to start this academic year and I remember saying to Alex, “this is my year for work”. I’d had so many interruptions to my career since my fist diagnosis due to health or treatment so I was determined that this year I would get through a whole school year without any…and then came Covid-19!

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Navigating my way through the pandemic with shielding has, at times, been incredibly difficult. Before all of this I was learning to handle my health anxiety and a big part of this for me is my daily routine and being able to get out and about. So being stuck inside the house for 12 weeks was incredibly difficult mentally and physically. It’s made dealing with worries and anxiety about my health worsen; at the moment I can find myself quickly getting panicked over small things like a bruise on my leg or a white mark on my toe. I jump straight to it being a sign of Cyril and it’s one of the worst feelings I can have. Back to the Gilmore Girls here, because Lorelai once said something which sums up this feeling perfectly; my health anxiety makes my brain “a wild jungle of scary gibberish… Bicycle. Unicycle. Unitard. Hockey puck. Rattlesnake. Monkey, monkey, underpants….”

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One particular aspect of shielding I found really hard was not being able to attend any hospital appointments. It may sound strange but I get a lot comfort from these appointments, despite the regular anxiety which comes with blood tests and scans. But I am so thankful to my team and all the others who have dealt with this horrible situation and kept supporting and treating patients through this all. From arranging all the phone consultations to those volunteering to help deliver my medications. 

Last month I went to my hospital appointments face-to-face as I needed to have my scans. It felt very surreal with all the measures now in place, and having to do it all alone without Alex there was hard, but the nurses were amazing and so supportive. Thankfully all results were good which was a huge relief. I’m lucky and fortunate because however bad it has been for me, I know that there are many other cancer patients who have had it so very much harder with Covid, especially those preparing to start or those in the middle of treatment. Hospitals like the Royal Marsden still need our help more than ever before to allow them to continue to give patients everything they need to fight this viscous disease. You can read more about this on their website https://www.royalmarsden.org/emergency-appeal, where you can also still donate to the Royal Marsden Covid appeal. 

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Don’t get me wrong, I still get my bad days. There are days when I end up truly believing that I was programmed wrong as a human because of my genetic mutation, when I get so angry that this happened to me twice, and days when I don’t trust or even like my body. But then when I stop and think further, I remember that my body has worked to try to keep me safe, twice, and that anger is actually ok at times. And that I’m proud of my body and what it allows me to get on with, which has felt even more important over the past month with being able to be out the house more. 

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So that’s my year (and a half) summed up here, with the great, the good, the bad and the horrible. Who knows what is to come next, but if this year is anything to go by, then guessing or planning certainly won’t work. Which means I’m (obviously) going back to Gilmore Girls for my answer. So in the words of the Life and Death Brigade;

 

“In omnia paratus”…ready for anything.

 

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Getting good at being me

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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)

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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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How to make a ‘BRCA aware’ man

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Until now, Finding Cyril has focused on raising awareness of breast and ovarian cancer which are the two main cancers that female BRCA mutation carriers are at risk of. It seems the right time now to start talking about men and the BRCA gene mutation cancer risks. This is because my grandfather, who carried the BRCA 1 mutation, passed away from prostate cancer in January. I wanted to share a little about him, his life and his BRCA story.

When my family learnt about BRCA 1 a few years ago, it came to light that my grandpa was one of four known carriers out of his ten siblings. A few months after learning that he was a carrier, he was then diagnosed with prostate cancer. We carry the BRCA 1 mutation in my family, and current research suggests that this mutation does not actually cause an increased risk of prostate or breast cancer in men above that of the general population. BRCA 2 gene mutation carriers are thought to carry a higher lifetime risk of prostate and male breast cancer compared with that of the general population.

My grandpa was 85 when he was diagnosed with prostate cancer and although BRCA was relevant to consider in the context of his diagnosis, it is also a common cancer in older aged men. Age is also a factor in determining the level and intensity of treatment for prostate cancer. For my grandpa, a treatment plan was put in place that seemed to be very manageable for him. This included an injection every three months and some daily tablets. On this treatment, the cancer was kept at bay for nearly two years. He also had COPD (Chronic Obstructive Pulmonary Disease), which he had been living with for quite a few years. This was always the more challenging condition for him to manage until about six months ago when the prostate cancer became increasingly harder to control. Over this time, he started to need more regular hospital admissions. Last November, his health began to decline really quickly. We learnt then that the cancer had spread to most of his body, and that there was little more that could be done in terms of treatment.

A plan was put in place to keep him as comfortable as possible, and have him cared for at home which was his wish. After five weeks in hospital, and with the support of a team of wonderful carers, he was moved back home where he was for three weeks before he passed away peacefully on 13th January with my nana at his side. Two weeks before he passed away, he asked me to make a birthday cake and arrange for all the family to be at his house to celebrate my nana’s birthday. We invited the whole family and were all able to squeeze into the bedroom where he was so that we could celebrate with him. It was such a special afternoon, especially because he had asked for us to arrange this.

The day my grandpa (or Popsi as we called him) passed away I heard someone say “the local high street is a poorer place without him.” This is so very true because it wasn’t just family and friends who he cared about. For as long as I can remember, he delighted in being able go out to the shops on his local high street. He knew everyone who worked there including the tailor, the chemist, the baker and the newsagent. And he didn’t just know them; they were part of his life. Up until only a few years ago, Popsi made sure that he would still find a way to get to the bakery on a Friday morning, where they would all meet for coffee. He had a collection of contacts that I don’t think any of us even fully knew about, but if he ever heard that you needed something, even just toothpaste, he would quickly call you and tell you not to get it because he could get it cheaper from someone he knew. And he really could!

Other than his family and friends, the main love of Popsi’s life was food. He loved everything about food, cooking it, eating it and especially talking about it. He was born in Bombay and lived there until he came to the UK with my nana, dad and aunt in 1965, so cooking and eating Indian food was the centre of all for him. Up until a few years ago, he and my nana continued to cook for us on Friday nights. And even when he couldn’t manage having us all at their house, he would pack up portions for someone to collect and distribute to our houses. But he was so very particular about food and what he considered good food. If you happened to go out for an Indian meal with friends, you could bet your life that he would ring you the next day to enquire about the menu, the portions and the price and size of the naan bread. He would then tell you the mistakes you made in ordering and what you should do next time. He knew everything about where to get the best local Indian meals. Growing up with this was amazing but somewhat challenging. If we were to decide on a family meal out, it was an unspoken rule that we would all take a back seat to the planning and just turn up when and where we were told to. He would pick the restaurant, order the food and tell the waiters how to cook it. At times he even used to take my nana’s home-cooked pilau rice to the restaurant with him, telling the waiters that although their rice was ok, it was definitely not to the standard of his wife’s, so he would rather they heat up hers and serve it to us. And because they all loved him, they would willingly oblige – it was really quite remarkable!

Popsi was really affected by the knowledge that BRCA has been passed down to my dad and to me. By that time, he had already seen two of his sisters go through breast cancer, so when I was diagnosed with ovarian cancer the following year, he really struggled with it. He often blamed himself for what happened to me, feeling that he was in some way responsible. It was always important for me to talk about it with him and tell him to try and not blame himself, which is easier said than done because hereditary illness so often brings this feeling of guilt.

During my treatment he became like a cheerleader for me. Being on chemo meant that I was at home a lot of the time, so I could to talk to him and my nana on the phone every day. At the time, he was struggling to walk and I was dealing with the after effects of a chemo session. I would set us both goals for the day. For example, he had to walk to the post-box outside his house and I would walk round the garden. My Popsi always loved reading my blogs and never took off his Finding Cyril band from the day he got it, even when he was in hospital and even when he passed away. We all noticed how he seemed to get some of his fight back during my treatment, despite his worsening health. I truly believe that he made sure he kept going so that he could see me get better physically and mentally. When I reached remission and then finished all treatment last November, he was so happy. He was also delighted to meet my boyfriend and I think for him it was extra confirmation that I was now in a much better place.

My Popsi died at his home which meant that the day it happened we were able to be at home with him once he had passed away. I knew that I could go and see him but felt really unsure about whether I would be able to deal with that. I have always been fearful of death and dying. There’s a part of me that sometimes tries hard to avoid even thinking that death happens. Living with cancer has meant having to confront these fears face on, but being honest, I don’t always cope well with this. Although I felt uncomfortable with the idea of seeing his body and looking at death in this way, it was important to me that I did. I kissed him and told him that I loved him. I told him again that he never needed to blame himself for what happened, and that I never ever had. I promised to always keep raising awareness of BRCA and helping others going through it.

So because this blog is a way to celebrate my Popsi and uphold the promise that I made to him, I’ve decided to talk about men and raise awareness of the impact of the BRCA mutation for them. And because of how much he loved to cook, what better way to think about it than as a recipe:

 

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My Popsi didn’t really get a chance to be BRCA aware for himself and his family, but thanks to the growing research and understanding in this field, more and more people are now able to do this earlier on in life. Knowing the type of person that he was, I know that had he had the chance, he would have used the knowledge to help protect himself and his family as much as possible. That is one of the reasons why it is so important to me to continue the work that Finding Cyril is doing.

Below are some useful links for reading a bit more about BRCA gene mutations in men:

 

https://prostatecanceruk.org/about-us/news-and-views/2013/8/brca-genes-myth-busters

 

https://www.royalmarsden.nhs.uk/sites/default/files/files_trust/beginners-guide-to-brca1-and-brca2.PDF

Letters from a stranger

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This month (16th November to be exact) I am able to say that I have now been in remission for one year. What an incredible sentence to say! As much as I love the sound of that, it is contrasted by the thoughts that I have about the future. Will remission last? Will I get to five years clear without relapsing?

But despite all of the questions and the underlying fear I have about it, I felt strongly that I wanted to mark this milestone, and I’ve been wondering for a while about how I was going to do this. Should I do something that would take me out of my comfort zone? Should I try something new? I couldn’t decide on anything. A few weeks ago, I thought about it in a different way. What if I mark this milestone in a way that keeps me connected to the reason I’m at this milestone in the first place? With this in mind, I thought about setting up something that isn’t just for this year, but something that I hope to do every year for cancer patients.

When I first thought of this I knew I needed to do something that would bring a smile to patients’ faces. Then I thought about how many followers and visitors the Finding Cyril blog has and so I wondered if I could call upon this very large group people to help me. Then it came to me!

My idea is to set up a way for people to give messages of support to those going through cancer treatment because when I was having treatment, one of the things that gave me comfort and encouragement was the emails and comments I would get to the blog. Often these messages were from complete strangers. In some way these were the especially special messages to me. So I’ve decided to set up ‘letters from a stranger.’ The idea is that we can start of chain of letters that can be given to patients on the cancer treatment wards. Here’s how it would work. You write a letter or note on email. It doesn’t have to be long. It could just be a small note to make somebody smile as they go through chemotherapy.

How to take part:

  • they are anonymous so don’t write your name
  • you then send it to findingcyril@gmail.com
  • these can then be given to the Royal Marsden Cancer Charity  for patients
  • if it takes off then I will  do this every November around my remission date

Here are some examples of what I’m thinking:

Dear the person whose lap this letter lands in,

I know that you must be tackling an awful lot at the moment, and although there is probably little I can say to make things easier, I wanted to say that I am thinking of you. I also wanted to share my favourite Henri Matisse quote with you.

‘There are flowers all around for those who want to see them.’

I love this quote because it reminds me that when it feels like there are no flowers to be seen, it’s probably because I’m not looking hard enough or in the right direction. This is something that has helped me at hard times, so I wanted to share it with you.

Sending my very best wishes,

A stranger

Dear stranger,

I hope your day is going okay. I recently read a book by Sarah Ford called ‘Be a unicorn and live on the bright side.’ It’s not a book of many words, but one of the pages really stuck with me so I thought I would share it. It went like this:

‘Watching clouds made Unicorn feel really happy.’

I had a go today and Unicorn was right; I couldn’t help but smile. 

Sending you lots of love

A stranger

If you would like to take part in this project please email your notes to findingcyril@gmail.com. Please share this blog with as many people as you can. I am hoping to get lots of replies!

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One very long tube journey

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Swimming with a shark and another cancerversary

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On the morning of 24th August 2016, I made my way up to the Royal Marsden Hospital ready to undergo what is referred to as radical debulking surgery. It was a fairly complicated procedure, and it is safe to say that I am now somewhat lighter inside. If we went into the nitty gritty of my surgery you might end up looking up several random parts of the body such as Pouch of Douglas. Who even knew such a thing existed?! I’d always just associated cancer with chemotherapy, but reflecting a year on in some ways surgery was the point in the journey where I was challenged the most, not just physically but also emotionally. As I have said before, my very cool scar from surgery is my daily reminder that I won the first boxing match against Cyril.

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Fast forward exactly 365 days to 24th August 2017 and I made the very same trip up to the Royal Marsden for a CT scan to check that Cyril has stayed well away and all is healing well post surgery. The last CT I had was in November 2016 just before I started my Avastin treatment. The fact that I had my scan a year on from surgery was an important milestone for me. Below is the only photo I have from yesterday. It was taken by the paparazzi (AKA my dad). Of course I don’t play by his rules for photo taking. In this photo I am pulling a stupid face and tilting my head; his two pet hates!

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Since my surgery last year, Cyril hasn’t given my team any reason to suspect he’s made his way back. I’ve had regular checks and Avastin IV treatment every three weeks and this routine has been like a safety net to me. However, it has definitely not stopped me worrying especially more recently as I start to get used to the idea of not having such a secure safety net once my Avastin treatment comes to an end. It’s meant that anxiety has had a very easy route in for me, and can often circle me like a shark in water. So much so that I’ve named her Jaws.

Jaws and I have recently been making an effort to become friends. She’s a difficult character and attempting to befriend her is definitely not easy. But luckily/unluckily I see her frequently enough to be able to start making progress. She also seems to have Cyril on speed dial, so I’m often left having to contend with the two of them causing trouble together.

Last week, I took a big step forward in my befriending quest. For a while now I’ve been holding off confirming my last Avastin appointment on the chemotherapy ward. I’ve always known that my Avastin will end in November, but I’ve been avoiding putting the last date in my diary because in some weird way I don’t want it to end. Ending Avastin means going down to three monthly check-ups instead of three weekly check-ups. But last week I finally did it. I was nervous all the way up to the ward, and there were so many emotions going through my mind. Once I confirmed the date I felt a great sense of relief and as it was as though I had taken back a bit more control from Jaws. I see it as if she is always going to be about somewhere, but by taking steps like this it helps to make sure that I direct her away from me rather than have her always circling me. She will definitely keep coming back, but it helped to remind myself that I took that step last week and so I could do it again with my scan this week.

 The day before the scan was also a good test for me in reminding myself not to let Jaws get too close. I tried to hold onto to the facts. My cancer markers have stayed down, I feel physically well in myself and my team don’t have reason to suspect Cyril is back. When I noticed myself getting too caught up in a battle with Jaws, I made the conscious effort to go and do the new thing which I’ve found helps calm me down. I went swimming, which I realise given the whole shark thing is fairly ironic, but it really does work.

After I had the scan yesterday, I sat in the waiting room ready to see my consultant for the results. I remember feeling strangely calm, even when realising that I would be seeing him in the same clinic room I was in when I got given my diagnosis last year. It was a huge relief to hear him say that the scan looked good, that there were no signs of cancer and that all my treatment has clearly been doing a good job of keeping my body safe. For the first time I felt able for the first time to ask him about what happens when Avastin stops. This is something I’ve made a lot of effort to avoid talking about because the end of active treatment is a scary thought to me. I worry about not having that safety net and being more exposed to Cyril as well as my increased risk of breast cancer due to BRCA. Some of that fear was lessened yesterday once I finally opened up the conversation about the follow ups, and deep down I knew it would be because Marsden magic is very powerful.

As much as I try not to, I do often wonder to myself what if Cyril comes back or breast cancer comes along before I’m able to have my preventative mastectomy, which I can’t have this yet because my team want my risk of reoccurrence to be lower before I embark on more surgery. When I find myself thinking about this I can get really caught up in worry and often find myself in a very dark place. One of the things that helps me is reminding myself of all the inspirational people that have come into my life because of cancer. I have met people who have lived and are living with it, and those who are living with a reoccurrence. The strength and positivity I see in these people is such an encouragement, and having that network of support is like another safety net which isn’t going anywhere.

 Yesterday was a strange day for me and also for those around me. This week we’ve been all been talking a lot about what it was like a year ago (specifically on 24th August 2016), and how different things are one year on. One of my sisters reminded me of how she remembers wandering round outside the hospital for seven hours waiting to hear updates from my consultant. I know exactly what she did in those seven hours because she wrote in my journal, so I didn’t suffer from FOMO! My other sister also reminded me of her experience of that day last year. While I was in surgery she found out that she was pregnant with her third baby. We’ve often spoken about how although wonderful news, she also had lots of difficult feelings about it that day. I was the first person she told about the pregnancy a few weeks after surgery. I like to think of it as a lovely moment of coincidence, followed nine months later by another coincidence when my niece arrived exactly on her due date, which was an Avastin treatment day for me. I was the first family member to meet her and also learn that she is my namesake, with Laura as her middle name.

And as I write this on Thursday night, I think back to where I was this exact time last year and the moments that stand out for me the most. This time last year surgery was finished and I was sedated on a ventilator in critical care. One of the strange things about cancer is that it leaves you with so many anniversaries and they all have importance. The day after surgery I was woken up and my recovery started. This will always be such significant point for me in my journey because it was the first time since my diagnosis that I was the most cancer free I had been. The other important memory I have was leaving hospital a week later. Recovery was slow but I was lucky to be able to do most of it at home because my consultant was happy to discharge me after six days. The morning I found out that I could go home my sister came to see me before she went to work. At my request she gave me a shower, shaved my legs, painted my nails, did my hair and put my make-up on before I left hospital. I really wanted to feel as much myself as I could when leaving, even though I could hardly move! It was another big milestone for me and I remember feeling so happy…which was probably a little to do with my pain relief medication! I feel this is an appropriate point to thank her again for doing this, but also offer her first dibs on doing the same after my have preventive mastectomy one day!

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This last year since surgery has been up and down, and I have no doubt that my cancer journey will continue in this way. I’ve been getting back to normality, but I guess really what I mean is finding a new normality. It cannot and never will be the normal that I knew before my diagnosis. Cancer and all that it comes with (including a shark named Jaws) is now a part of me, but I’ll take it all because I’m lucky enough to be here saying that. And I’m slowly realising that in moments when Jaws and I are struggling to navigate this new normality it’s okay to not always be okay, and it’s okay to say that I’m not okay. That way someone can know to throw me a rope if Jaws gets a little too out of control.

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Oscar

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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.