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

August 31, 2020August 31, 2020Leave a comment

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.

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.

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.

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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!

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….”

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.

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.

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.

Getting good at being me

September 15, 2018September 15, 2018Leave a comment

Friday 24^th 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.

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.”

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.

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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.

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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.

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“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)

May 5, 2018May 9, 2018Leave a comment

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 12^th 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:

Markers and physical examination will be fine and I’ll just go back in three months.
Marker and/or physical examination will flag up something, but it will turn out to be a false alarm.
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 23^rd 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 16^th 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 (23^rd 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.

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.

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

Getting back into the world of teaching!

A cute photo of Alex and I!

5^th 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…

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.

28^th 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.

12^th April 2018 – A date with the MRI scanner

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:

A take away Pret a manger sandwich
A portion of chips from Lyon café
An ice-cream biscuit from Snowflake
Half a Palmier biscuit from PAULS Bakery
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.

One very long tube journey

November 10, 2017November 25, 20179 Comments

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 8^th 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 7^th 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 8^th 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.

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!

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.

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

September 19, 2017September 19, 2017Leave a comment

On Saturday 9^th 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.

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.

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.

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.’

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

Ca125… I think we should just be friends

June 17, 2017June 20, 20172 Comments

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

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

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

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

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

27^th May 2017

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

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

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

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

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

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

28^th May 2017

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

29^th May 2017

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

6^th June 2017

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

7^th June 2017

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

8^th June 2017

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

9^thJune 2017

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

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

14^th June 2017

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

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

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

BRCAfest – Food, fun, and fundraising!

April 21, 2017April 21, 2017Leave a comment

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

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

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

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

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

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

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

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

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

Now that the event is over, there are lots of things I need to focus on over the coming weeks. I have my Avastin treatment as well as my three monthly ‘breast MOT’ to check that my potentially killer mutant boobs are behaving themselves, and are only (thanks to the menopause) guilty of increasing in size…which I don‘t class as a real problem! I will also be taking a big step at work and getting back in front of a class of children to teach my first French class since May 2016. There is lots to come over the next few weeks, but the enjoyment and success of BRCAfest has definitely helped to set me up positively for it all!

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

https://myalbum.com/embed/dMbZX2sppe0k

Let’s talk menopause!

November 28, 2016December 8, 20162 Comments

Menopause can be scary and bewildering. It’s a step into the unknown; especially so if you step into it far earlier in your life than you’re meant to.

When I discovered that my body would be going through the menopause at 27, I struggled to make sense of it and what I would be facing. I was really anxious, especially because I had no real idea of what the symptoms would be like. I’d heard of them, but never quite understood how bad they could be. It was also hard to deal with the emotional side of early menopause. There are still times when I feel like an older lady trapped in a young woman’s body, but with time, I find myself slowly adjusting to it and knowing the things that I can do to help deal with some of the symptoms. So, I thought I would share some my personal top tips about menopause!

1. Seeking professional advice instead of using Dr Google

Consulting Dr Google is always so tempting, but it can cause unnecessary anxiety and worry. Early on in my treatment, I made the decision not to look up the symptoms of menopause on the internet, because I knew I would get caught up and overly focused on everything that I read. Before my operation, all I really knew about menopause were the infamous ‘hot flushes’ that the older women in my family would talk about. After my operation, I very quickly realised that it was much more than that. I started to experience many other symptoms that made me very anxious and unsure about myself. It was so helpful at that point to spend time with my specialist clinical nurse at the Marsden, talking through all of the possible symptoms, some of which I’d never even considered, such as moods swings. After having this conversation, I felt a lot calmer because I knew what to expect.

doctor-google-asylum 2. The power of the cold can

I find that putting a cold canned drink on the back of your neck is a really good solution to managing the hot flushes, which can often feel like a giant explosion of heat engulfing your body. They can feel like a small makeshift version of a cooling pillow (see link below) that helps with hot flushes and night sweats. For more information about cooling pillows look at:

http://www.sleepcomfortably.org/the-best-cooling-pillow-for-hot-flashes-reviews-guide/

3. The benefit of wearing a nightie

I have always loved wearing pajamas, and up until now have always opted for long trousers and top sets –the warmer the better. I never liked the idea of wearing a nightie (it just sounds so granny like!) but when my friend got me one for me to wear after surgery, I was instantly converted! It has been amazing for helping me to regulate my body temperature at night. And contrary to my former judgmental thoughts about them, I’ve discovered that there are so many different types out there. Check out the link below.

http://www.debenhams.com/lingerie/nightwear/nightdresses-shirts

4. Thinking through outfits carefully

Due to all this menopause malarkey, I find it very hard to regulate my body temperature in the day. I lose track of how many times my jumper goes on and comes off during the day, and I find that when I’m out and about, my coat is constantly coming on and off. It can be quite annoying because sometimes only seconds after taking a layer off, I then get really cold! I have found that layering is key, and I now tend to wear thinner jumpers with a strap top underneath to help with the situation.

5. Having herbal tea before bed

I have found that a hot drink before bed really helps me to relax and worry less about potential night sweats. I really like drinking red rooibos tea. It’s a caffeine free tea that grows naturally in South Africa and is also thought to have various healing properties.

458220b 6. Holistic treatments

Since my diagnosis, I’ve tried various alternative treatments that have helped with relaxation and managing anxiety, especially menopause related anxiety. Chai Cancer Care offers lots of different treatments that I’ve found can really help with anxiety. At the moment, I have Reiki therapy, massages and reflexology. Reiki is a very spiritual healing treatment that involves a light touch on or around the body. I’ve found that it helps me to stop focusing on the thoughts that whirl around in my mind by being more in touch with my body. Massages have also helped me loads – having a massage actually increases the levels of oxytocin and serotonin in the body. Regular massage therapy also lowers your blood pressure, lowers the heart rate and improves your breathing. Finally, I have found reflexology to be really good at helping me to relax and relieve tension and stress. Reflexology is basically a system involving massage, or a degree of pressure, in certain areas of the body. It’s based on the theory that there are specific places called ‘reflex points’ on the feet, hands, and other areas that are linked to helping restore proper functioning of internal organs. Look at the links below for more information about these therapies.

http://hubpages.com/health/10-Ways-Reiki-Helps-People-with-Anxiety

https://www.massageenvy.com/massage/massage-benefits/massage-for-anxiety/

http://www.naturaltherapypages.com.au/article/reflexology_for_anxiety

7. Acupuncture

After my surgery in August I immediately started experiencing the menopause night sweats. They were so intense to begin that I couldn’t sleep. I ended up having to take sleeping pills most nights. I also had to change my pajamas on a daily basis and would wake up looking like I had been swimming (my hair being would be drenched in sweat). The night sweats caused me a lot of extra anxiety, not at all helped by the fact that I wasn’t sleeping properly. My specialist nurse at the Marsden referred me for acupuncture, as there is evidence supporting this being successful in reducing night sweats.

At the moment I’m having weekly sessions of acupuncture and once these are finished, I will be taught a self-needling technique so I can continue doing it at home. I have found acupuncture to really successful – I no longer take sleeping pills, the night sweats are not at all as intense as they were and I’m able to sleep a lot better and for longer periods without waking up. Look at the links below for information about how acupuncture can help to alleviate menopausal symptoms.

http://www.medicalnewstoday.com/articles/279714.php

http://www.acupuncture.org.uk/a-to-z-of-conditions/a-to-z-of-conditions/menopausal-symptoms.html

acupuncture-needles

8. Laughter

I am a 27-year-old lady going through menopause. It’s a lot earlier than it should be in life, and is something takes a lot of adjusting to. It can still make me feel really strange. There are times when I’m out with people and experience hot flushes and end up feeling like I’m drenched in sweat. I can become very aware of myself in these ‘sweaty moments,’ and worry about whether they are obvious to other people around me (this probably makes me more anxious and makes the sweating worse!). However, I’m slowly starting to see that laughter can help with these feelings, so I’ve started telling people I’m out with that they are not hot flushes but instead ‘power surges!’

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It seems like the positive impact of laughter where menopause is concerned is a popular idea, because there is even a play on the subject.‘Menopause The Musical’ is definitely something I want to see – I’ve included the synopsis below:

“Starring Cheryl Fergison (EastEnders), Maureen Nolan (The Nolans), Rebecca Wheatley (Casualty) and Ruth Berkeley (Penny Dreadful) Menopause the Musical is heading out on another UK wide tour. This hysterical show packed full of one-liners about night sweats, hot flushes and memory loss is backed by an instantly recognisable soundtrack of innuendo-laden versions of 60s, 70s and 80s pop classics. An all-singing, all-dancing comedy set in a department store, where four women with seemingly nothing in common, meet by chance and make fun of their woeful lives experiencing “The Change”. They soon bond as they realise that the menopause is no longer “The Silent Passage”, but an unavoidable stage in every woman’s life. The hysterical and uplifting Menopause The Musical will have you laughing, and singing, all the way home. The show has played sold out-out tours across the world so call your girlfriends and book now for the ultimate girls night out.”

The show will be in Richmond on Sunday 26th February 2017and Milton Keynes on Sunday 19th March 2017. I will definitely be booking tickets! The link below provides more information about the show and how to book tickets.

http://www.atgtickets.com/shows/menopause-the-musical/#overview_tab

So these are just a few things that I have found help me at the moment. I hope that by talking a bit more about the menopause, it will help others who are also going through it. I also hope that it will bring about more discussion about any ideas or tips that other people have. I’m keen to hear about new ideas to help with menopause symptoms, so if you have any ideas or suggestions that you want to share, then please do mention them in the comments section on the blog!
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Keep calm and make lists

November 12, 2016November 12, 2016Leave a comment

On Monday 7th November, I was back on the chemo ward to complete cycle six of my chemo. This also marked the end of my chemo! Below is a photo collage that my brother made for me to mark this milestone. The end of chemo doesn’t mean the end of my treatment though; it means I’ve finished one more stage of it. I will be back at the Marsden next week for a new CT scan, and to see the professor in charge of my chemo to get the scan results. I’ll also find out a bit more about my three weekly Avastin maintenance treatment.

So back to chemo this week. After took two attempts to get my cannula in, everything went smoothly. It was great to have a visit from my consultant and specialist nurse during the day. As we stood together talking at my final chemo session, I had a flashback to 3rd June when we all first met, but in very different circumstances. I had not slept for a day, was in my pyjamas and a hoodie that was far too big for me with a crazy, ‘I’ve not dealt with my hair for two days’ hairdo. I was also filled with anxiety, fear and shock. On Monday, it was a completely different story. I was dressed in clothes that made me feel good, had make up on and had exchanged the crazy hairdo for a cooling cap. More importantly, I felt like a completely different person. This flashback made me emotional because it was another reminder of how far I have come with the support of my incredible medical team, family and friends. We all spoke about what I was going to do to celebrate getting to this point. I have a long list, but the first thing I plan to do is get my nose pierced! After years of saying I want to get it done, but being too scared of the pain, I’ve decided to go for it. Given the amount of cannulas I’ve had this year, and not forgetting the major surgery bit, I’m hopeful that a small piecing will be nothing in comparison!

Back to chemo this week…My magnesium and haemoglobin were low, so that meant another 2 ½ hours of IV magnesium and a 4-hour blood transfusion after my chemotherapy drugs. I ended up being at the Marsden from 8am-9pm… A new record for me! As I was there so late, I had to be transferred to an inpatient ward for the final unit of blood, because the chemotherapy day unit closes at 7pm. Luckily I had plenty of evening company. It was wonderful to have my friend Rosie, my dad, my aunt and my sister with me. I also received beautiful bouquets of flowers from my friends Rosie and Jessica. As I have explained before, flowers make me think of a quote by Henri Matisse: ‘Il y a des fleurs partout qui veut bien les voir.’ This translates as: ‘There are flowers everywhere for those who want to see them.’ Matisse was highlighting the importance of optimism and having a positive outlook on life, which is something I know I need to be doing, despite the uncertainties that I feel I am facing.

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That evening on the ward, it was such a wonderful surprise to see the first nurse I met at the Marsden the day that I was transferred there from A&E back on 3rd June. She put my first Marsden cannula in, and it seemed quite fitting that she took the cannula out from my final chemo session. I hadn’t seen her since that first night, so I got to tell her all about my treatment and the blog. I’m also so pleased that she now has a Finding Cyril band!

In last week’s blog I spoke about my fears regarding my future health and how the ongoing support from my medical team, family and friends is helping me to deal with these fears. I also mentioned the need to find ways to cope with some of the difficult feelings and emotions. A few days ago, I tried something else – I decided to write a list called: ‘Normal Things.’ This list (I have shared a snippet of it below) includes lots of things that I haven’t done over the past six months, because I either haven’t felt able, or have been too anxious to do. Some of the things might seem really easy but they have become quite hard for me. My theory is that this list of things will help me to keep busy between my now three-weekly maintenance treatments at the Marsden, and therefore help keep my mind from focusing on what my tumour markers will be doing, and my worries about the future. My idea of the list relates to something that the American writer Dale Harbison Carnegie once said: ‘Inaction breeds doubt and fear. Action breeds confidence and courage. If you want to conquer fear, do not sit home and think about it. Go out and get busy.’ As I have said before, I know that it is a case of trial and error to find the coping mechanisms that will help me deal with the uncertainties that I face, and I might have to adapt and change these mechanisms depending on what I am going through. I’m pleased to say that I’ve already ticked three things off my list this week….I took a tube on my own and went to my Marsden appointment on Wednesday on my own! On Thursday, I went to a shopping centre for the first time since my diagnosis and made some great purchases! I know that there are bound to be days when whatever I try to do to help me cope might feel futile, and that I may feel like I don’t know what my next step is. For now though, I’m just trying to stay focused on reminding myself that when things get tough, I have to get tougher and continue to push forward, however hard it feels.

As I enter into the next phase of my treatment, I also find myself reflecting on the last six months, and the fact that I have learned, and I continue to learn, that I am a lot stronger than I ever thought I was. There have been many times in my life where I have questioned my ability to do things, or thought that I was not strong enough to deal with certain things that were happening. But ‘Cyril’ has shown me that there seems to be a lot of truth in Bob Marley’s famous words: ‘You never know how strong you are, until being strong is the only choice you have.’

Something to smile about on World Smile Day!

October 7, 2016November 26, 2017Leave a comment

Before I was admitted for investigation to the Royal Marsden on the 3rd June, I visited a gastroenterologist who told me that my symptoms were due to constipation and he sent me home with Movicol. With this in mind I thought it would be good to go to a ‘Legs, Bums and Tums’ class to get things moving. I remember at the time not enjoying this class because every exercise I did hurt a lot more than usual, and I remember feeling as though things were moving around in my tummy. It’s still strange to think back to that time now that I know it was in fact ‘Cyril’.

Once I’d started my chemo in June, I felt too anxious to go back to the gym. I think this was because I was worried about feeling unwell, being in a confined space and also picking up a virus. I made sure that I did a lot of walking but didn’t ever go back to the gym.

After having my operation, I knew that physiotherapy would be an important part of my recovery. As I explained in my surgery blog, the Marsden physiotherapy team was incredible at getting me moving post-surgery and with preparing me for managing at home.

As I was discharged from hospital earlier than anticipated, keeping up physio at home was really important. Chai Cancer Care provided me with amazing support because I had weekly physiotherapy sessions at home. This was brilliant because at that point in my recovery I was much weaker so it was comforting to have these sessions at home. After a few weeks, I started to progress to harder exercises which was a great motivation for me to keep going with it.

Today marks another special day for me – I had my first physio session at Chai Cancer Care in the gym. It felt very surreal entering a gym again. Not only did the session work on my core stability, but I used an arm bike, cycled for eight minutes and even did steps ups! Even though I was very out of breath and tired after the session, I was on cloud nine! It was a huge achievement for me and reminded me of just how far I have come. Now I can’t wait to get my gym kit back on for session 2!

At this point, I want to say a huge thank you to the Marsden physiotherapy team who got me up and moving after surgery and prepped me with exercises to do at home. I also want to thank the Chai Cancer Care physiotherapists who have supported me with my rehab at home. It’s not always been easy and there have been days when I’ve felt really tired and weak from chemo, but I have tried hard to keep up with my exercises as much as I can because they are so important to my overall recovery.

I’ve achieved something big for me today and it reminded me again that ‘Recovery is a process. It takes time. It takes patience.’ Sometimes it feels like it takes everything you’ve got. But there are people who are highly experienced and skilled in knowing how to get you to your goals, and with their support physical recovery is achievable, even when it sometimes feels unachievable!

Finding Cyril

The musings of a young woman diagnosed with ovarian cancer

Tag: Surgery

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

Getting good at being me

“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)

One very long tube journey

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

Ca125… I think we should just be friends

BRCAfest – Food, fun, and fundraising!

Let’s talk menopause!

Keep calm and make lists

Something to smile about on World Smile Day!