Tag: menopause

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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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