My Health Journey – I Survived Breast Cancer: Sarah from A Simple and Contented Life shares her journey with breast cancer – how she felt, what kept her going and what she is up to now…
1. Tell us a bit about yourself!
I’m Sarah. I’m a 38-year-old mum of two boys aged 7 and 18. I’ve been a stepmum to our eldest for the best part of the last fifteen years. Moving from Sussex 3 years ago, we now live in Essex with a five-month-old French Bulldog pup named Arthur. This year my Hubby and I celebrated being married for 10 years.
Described by my friends as a cross between Monica Gellar from the TV sitcom Friends and Hermione Granger from Harry Potter, I love to plan and organise, I’m a real bookworm and love to write. My favourite way to spend my time is curled up in a chair in a coffee shop, hazelnut latte in one hand, a book in the other.
A little ditzy on occasion, I often reply to text messages in my head and love anything stationery related…especially pretty notebooks from Paperchase! I have a random desire to holiday in a lighthouse and would love to have a garden big enough to build a tree house. My dream is to be an author and write a series of books that help others create and live a life they truly love.
2. When were you first diagnosed and what is your diagnosis?
I was diagnosed in April last year after finding an abnormal lump during one of my checks. I’d always tried to check myself regularly and that was the first time I’d felt anything that gave me cause for concern. I’d had a little bit of pain above my left breast for a couple of days beforehand but assumed I’d just pulled a muscle.
I went to my doctor and she referred me straight to the Breast Unit at Broomfield Hospital. They gave me a mammogram and an ultrasound. Breaking the news that the tumour was most likely malignant, they arranged for me to have a biopsy so they could confirm for sure. The results showed that I had Grade 2 Invasive Lobular Breast Cancer – lobular because it had started in the milk-carrying ducts and invasive because it had spread into the surrounding tissue. It was HER2 negative and Estrogen Receptor (ER) positive (one of the most common types of breast cancer). Because a small metastasise had been found in one of my sentinel nodes I had an axillary dissection to see if it had spread any further. Thankfully, it hadn’t.
3. How did you feel when you heard your diagnosis?
I’m not sure I can begin to describe how I felt when I first heard the news. I remember being overcome with all kinds of emotions all at once. There was disbelief and a lot of fear. I felt sick, numb, scared and angry and I wondered why it was happening to me. More than anything, I was terrified for my boys and what my diagnosis would mean for them.
I had absolutely no idea how to process what I was being told or how I was going to tell my husband. He’d wanted to come to the appointment with me but couldn’t get the time off work, so I had gone on my own. I was in shock the entire drive home and couldn’t say anything when I first saw him. I just remember standing there, staring at him. We both broke down and hugged, sobbing in each other’s arms. The days that followed were a blur. There were a lot of tears, a lot of wandering around the house dazed and a lot of staring into space.
Breaking the news to our parents was hard. We’re an incredibly close family but live a couple of hours away from them, so we had to tell them over the phone. Not being there to hug them was tough. We decided that we wouldn’t tell the boys until all of my tests had been completed and we knew how bad my cancer was and what the next steps were.
The rollercoaster of emotions continued throughout my treatment. There were a lot of decisions to be made in a very short space of time. It was very overwhelming. The thing I found the hardest to deal with was the fact that my youngest was only 5 when I was diagnosed. Only having just settled into school, the fear that he’d be growing up without his mum was immense. Some days it completely engulfed me. I’d lay on the sofa, too poorly from chemo to move, listening to my husband read him stories and put him to bed. Trying not to imagine what his life would be like without me there, those days were definitely the hardest.
A year on from finishing chemo I still have days where I feel numb and still can’t quite believe that it happened. The constant fear that my cancer will come back will never leave me. But I’m learning to live with it and I take comfort in the fact that time is a healer. Every day it gets a little easier.
4. Did you have a family history of breast cancer?
No. There’s no history of breast cancer in my family so it was a huge shock. Up until my diagnosis I’d been relatively healthy too. I’d never broken a bone and I’d never had a stay in hospital apart from having my son. I’d led a healthy lifestyle, ate a varied and balanced diet and was pretty fit and active. My diagnosis was completely unexpected and it totally pulled the rug out from underneath our feet.
5. What treatment did you undergo?
The first stage of my treatment was an immediate mastectomy and reconstruction. To create my new breast and nipple my surgeon took skin, fat, muscle and blood vessels from my right thigh. I had to have a CT scan to make sure the vessels in my leg were suitable before they went ahead with the operation. I spent the first week post-surgery in hospital with drains in both my breast and thigh. For the first two days I couldn’t move and had to lay flat on my back. Once home I had exercises which I had to do three times a day to get my arm moving again and help strengthen the remaining muscles in my thigh.
Six weeks after surgery I started chemotherapy. I had six rounds, one every three weeks. I was on a combination of drugs known as FEC-T which worked to stop any cancer cells that may have still been present from dividing or multiplying. The drugs were given intravenously in my arm. Watching them go in was pretty scary. For the first five days after each round I had daily injections of a granulocyte-colony stimulating factor which helped increase my white blood cell count and reduce my risk of infection.
6. Did you experience any side effects from the treatment?
After my initial surgery it was a while before I could do things for myself. For the first few weeks I was unable to lift my arm up very high or walk very far. Everyday activities like having a shower and getting dressed were a real challenge. I wasn’t allowed to do any heavy lifting or drive for at least three months after and it was a while before I could wear or walk in high heels again too. There were so many things I couldn’t do that I’d previously taken for granted. Normally fiercely independent, there were times where I felt incredibly helpless.
I knew that the likelihood of losing my hair during chemo was high, so I took control of the situation and had it cut short the day before I had my first session. Then, once it started falling out, my husband and I had a joint head shaving ceremony where we shaved each other’s heads. Taking control of my hair loss in this way really helped me cope with the fact it was happening. I had a huge amount of support from my friends during this time, two of them even shaved their heads too! Knowing I had their support made it all so much easier to bear.
Whilst I coped with losing my hair, I found losing my eyebrows and eyelashes really hard to deal with. Looking in the mirror and not recognising the person I saw was tough. I had to keep telling myself that it was only temporary, that they’d grow back eventually and that it was all part of the process in making sure I was still here for my boys.
As well as the hair loss, there were a few other side effects too. The drugs made me feel very sick, I had terrible headaches for the first few days of each cycle and a horrid taste in my mouth that just wouldn’t shift. I was incredibly tired and wanted to sleep all the time. I suffered from mouth ulcers, the injections caused a lot of pain in my bones and the latter rounds of chemo gave me terrible joint pain. I was also very cold at night too so would sleep in a beanie hat and often wore my hoodie round the house with the hood up.
Chemotherapy was hard but we got through it. We got used to our lives being on a three-week cycle. The first week I’d have my treatment and the side effects would be at their worst. During the second week my immune system was at its lowest point, so I had to be careful where I went and who I saw. By the third week I’d start to feel a little better. I’d have a bit more energy and manage a few walks before starting the cycle all over again.
7. What kept you going through your treatments?
My husband! Constantly by my side, his love, strength and support kept me going. There’s no way I could have gotten through my treatment without him. He came with me to every appointment and sat with me through every chemo session. He gave me my daily injections, cooked me whatever I could face eating and took me for a drive whenever I craved fresh air. Holding me when I needed to cry, he’d also sit and hold my hand during the moments I didn’t have any energy to do anything else.
My husband wasn’t the only one who was there for me though. I had a huge amount of support from friends and family too. Our friends were on hand to give us a few laughs when we needed them most and my inlaws, who we’re incredibly close to, came to stay and help out a few times too. This relieved some of the pressure for my husband. It was incredibly hard for him as he was looking after me, the boys and the house. He was doing all the school and college runs, he took me to all my appointments, he did all the cooking, washing and cleaning whilst somehow managing to find the time to work in between.
My boys kept me going too. My youngest still had another 13 more years until adulthood and so I wasn’t ready to go anywhere just yet. It was my job to be there for them, to be their mum, to see them grow up. That was my motivation and no matter how rough I felt, it gave me the strength to keep going, to not give up and to keep fighting.
Looking back I have no idea how we did it, but we did. As a family we took it one day at a time, one chemo round at a time. We made the most of what we had and we tried to lead as much of a normal life as possible. I learned to listen to my body and rest when needed. On the days I felt well we’d do something, even if it was just going for a cup of coffee.
8. Where are you now in your journey with cancer?
I’m in remission. My hair has grown back but I now keep it short as it’s a lot curlier than it was before. I’ve come to enjoy things that used to annoy me before. Seeing that my eyebrows need a wax is a gentle reminder of what I went through and all that I have to be thankful for. I have six-monthly check ups with my oncologist and I see the plastics team for my surgery sites once a year. I take Tamoxifen every day which stops the production of estrogen in my body and monthly injections of Zoladex that do the same. I’m on the waiting list to have my nipple and new areola tattooed so that it matches my right breast in colour.
Externally, my scars are slowly fading. Every day I look at them and they remind me I’m stronger than what tried to hurt me. Internally, my scars are still healing. There are times where emotionally it’s still tough but every day I feel a little stronger, a little less tired and what we went through gets a little easier to deal with.
9. What have been the biggest changes in your life since your diagnosis?
It has to be my outlook on life. Only 36 when I was diagnosed, I thought I was far too young yet there I was with breast cancer. We all know we’re going to die someday, but you never really think about it until something like that happens. Before being diagnosed I felt invincible. Now I’m much more down to earth and I’ve realised just how mortal we all are, how short the time we have together really is.
I’ve learnt to let go too. There was so much I wasn’t capable of doing during my treatment. Things I took for granted and things I had to accept I needed help with. I was always on the go before, always rushing around, cleaning, tidying, organising and sorting. But during my treatment I had to let others do it. It was hard but it taught me that things like the house being clean and tidy really don’t matter as much as I thought they did.
Both emotionally and physically I feel like a different person to the one I was before cancer. I don’t feel like who I was and I don’t think I look like who I was when I look in the mirror. It’s been a long journey learning to love and find myself again but every day I get another step closer. Like Dory, I’ve learnt to just keep swimming. I strive to not let things get me down and to live life to the full. I try to make each day count, to be really honest about what I want from life, to pursue only that which makes me happy and to make the most of the time I have with my friends and family.
10. What made you start your blog, A Simple and Contented Life?
I love to write and had secretly wanted my own blog for a while but never really knew what to write about. My brush with breast cancer taught me that life is precious and that it goes way too fast. It showed me that I needed to slow down, to make the most of the time I have with the ones I love and I wanted to help others do the same. Cancer had given me the theme for my blog. Now I write all about making family life less stressful and more enjoyable. I share ways to reduce overwhelm, find more balance and make time for family. I give busy mums the advice, support and tools they need to make a change for the better and create a family life they love. In more ways than one, writing has become my therapy!
11. What advice would you give a breast cancer patient who has just been diagnosed?
If I’m honest, nothing can prepare you for how you’ll feel. It’s so difficult to comprehend and get your head around and in some ways I don’t think you ever do. It can feel like your whole world has been ripped apart. Suddenly you feel so vulnerable, so mortal and there are no words that can make the situation better – especially in the early days when you don’t know what the outcome will be. Try not to dwell on what might or might not be though, you cannot control the future and it’s all too easy to focus on the negative. Try to look past that, to focus on the positives, what you have that is good in your life and those that love you.
Try not to judge how you’re feeling either. There’s no right or wrong way to feel. You’ll spend a lot of time questioning whether it’s real and why it’s happening to you. You’ll have days where you feel like you’re coping ok and days where you struggle. It’s all part of the emotional rollercoaster. It can be hard but let those around you help you. They’ll want to help and will be feeling helpless because they know there’s nothing they can do to make you better.
Write down any questions you might have and don’t be afraid to ask them. It’s impossible to think straight whilst processing the information and you’ll never remember what it is you want to ask, so write it down. All the decisions you need to make can be really overwhelming so ask as many questions as you need. There’s so much advice out there it’s hard to know what to follow. Whatever you do, don’t Google – that really doesn’t help! The breast cancer nurses are there to support you and they’re used to answering questions, so talk to them. I promise there are no silly questions and you won’t be the first person to have asked whatever it is that’s on your mind!
Finally, listen to your body. Your body will tell you when you need to rest, so listen to it. Eat as healthily as you can, get plenty of sleep, drink plenty of water and rest. If you find yourself thinking about it all the time find something to distract you. Try practising gratitude, meditating, listening to music or colouring. It doesn’t matter what it is as long as it allows you to switch off for a while.
12. What advice would you give to family or friends of breast cancer patients?
My friends and family are always telling me I’m a tough cookie, that they have no idea how I got through it all. But I think it was a whole lot tougher for them than it was for me. Finding out a loved one has cancer can be just as hard for friends and family as it is for the person concerned. Seeing you be ill, knowing there’s nothing they can do to make you better can be devastating for them.
If you’re a friend or relative of someone who’s just been diagnosed it can be difficult to know what to say or do. You want to be there for them but you’re not sure what to do for the best and you worry about saying the wrong thing. The only advice I can give is to not let those fears get in the way of you being there for them. Try to remember that the person they were before is still there and that whilst they might not admit it, they need you now more than ever. So show them you’re there for them. You don’t have to say or do much, just a hug and a smile is enough. Knowing they have your support, that you’re by their side will give them more strength than you can imagine.
Whatever you do, don’t avoid them just because you don’t know what to say or do. Be honest, tell them you have no words right now but you’re there for them. It’ll mean more to them than you’ll ever know. Know that there’ll be good days and there’ll be bad days. There’ll be times where they won’t want to talk and there’ll be times where they hide away and don’t want to see anyone. They may also shout and snap. Don’t be offended by any of this. It’s nothing personal and it isn’t directed at you. They’re terrified inside and sometimes the fear and helplessness lashes out. It’s all part of the emotional rollercoaster. What’s important is that they know you’re there for them regardless of what happens.
13. Do you think there is more we can do to educate the public on breast cancer?
I think there should be more education on how to check yourself and what signs to look out for. Everyone associates breast cancer with finding a lump but there are other symptoms too that I wasn’t aware of. There should also be more guidance and support on how to tell friends and family. Figuring out how to break the news to them was so hard for us. The Breast Unit were great on helping us tell our youngest, but telling our parents was just as tough. Having some help on what to say and how to say it would make the process just that little bit easier.
I think there should be more reassurance too about not being afraid to seek help when you discover something abnormal. It can be easy to put off going to the GP when you’re scared what the outcome might be. But don’t do it. The earlier you get help, the more that can be done. A diagnosis of breast cancer today doesn’t mean what it meant years ago. The treatments available today are amazing and there is so much that can be done. There is hope and there can be light at the end of the tunnel.
More about Sarah
Sarah is a proud mum of two, besotted wife, hazelnut latte drinker, bookworm and blogger. Incredibly passionate about helping others slow things down, find more balance and create a life they love, Sarah is the founder of the blog A Simple and Contented Life. A blog all about making family life a little bit less stressful and a whole lot more enjoyable.
Thank you so much Sarah for sharing your journey with us!
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