Re-claiming Our Bodies

 

I use words such as ‘hate’ ‘false’ ‘hideous’. I realise that those words are not helping. I would never use those words for anyone else, why do I think it’s acceptable for myself and my body?”

In our recent discussion, we talked about the struggle to accept our ourselves after the trauma of surgery,  plus ongoing adjuvant drugs and their less than pleasant side effects. We may be classed as fixed in medical terms, but can we ever truly accept our new bodies? To claim them back? To feel like we are worthy of our own love, let alone anyone else’s love?


For many of our ladies, it’s a work in progress. Some have had many surgeries and others have more to come. Learning to adapt and accept ourselves after surgery is a complex task. A couple feel they’ve achieved it, but many others feel lost and unsure how to move forward in a way that embraces their new shape and perspective of themselves.


Adjusting takes time. Looking in the mirror and having time to ourselves to get used to healing scars and changes, as our chest recovers from surgery, can help. Although, some of us really struggle with scars that are raised and prominent, so find it easier to cope by keeping covered up as much as possible.


We’ve heard about some beautiful scar tattoos, which work to hide the scar in the design. This body art can give a real confidence boost to those brave enough to have it done after all they’ve been through already.


Another confidence builder is being able to find clothes that fit and look nice. In the first few months post surgery, anything figure hugging really goes out the window, so reaching the stage where the swelling has settled and we have an idea what we have to work with can feel quite liberating after months of soreness and baggy clothes.


Beyond that, intimacy is another hurdle we often face. From the mutilation of our bodies to the sudden effects of chemically induced menopause, not only are we dealing with confidence issues, but also changes to our actual physical capability to engage in sex. This can be devastating to our relationships with our partners (who absolutely go through this with us).

While on the one hand, they are carrying out lifesaving work, on the other, I don’t think that our consultants and oncologists really understand the long term impact all of these issues have on us as.

As ever, moving forward isn’t actually linear, it takes exploration and perseverance to manage the outcome of surgery and also the changes that active treatment and adjuvant therapy throw at us.

So, to conclude, although we want to reclaim and love our bodies, there is no quick fix to learning how. Each of us is muddling through, in the hope we can be happy and confident again one day - only none of us know when that will be!

Hair Today, None Tomorrow

 

Hair today...none tomorrow 

It is commonly known that chemotherapy for breast cancer causes hair loss. The shock of a bald head, particularly on a woman, is used across all sorts of cancer campaigns and stories because it is such a strong image.  I feared becoming that image - of being the identification of a cancer patient. Of not looking 'normal'. Of not being me anymore. 

    There are ways to try and prevent hair loss, but if you are having a 6-month long chemo course for BC the chances are it will be difficult to retain. So I opted to just go for it and not try and prolong the agony. As has been my way through this process, my focus was on preparing for it - seeking advice, attending workshops (run by two amazing charities Cancer Hair Care and Look Good Feel Better) and buying up products - chemo lashes, hair pieces, hats, brow pencils, head oils etc etc. I also did the customary pre-chemo cut, twice, to make the losing process a bit less dramatic. But it was still dramatic. One day you run your fingers through your hair and it is literally coming out in clumps in your hand. My pillow was covered. As soon as I got to that stage I asked my husband to shave my hair down to a number 2 all over. And there it was.....gone. 

    But here lies the real shock for me. It wasn't actually that bad! I had really loved my first pre-chemo cut and had loads of positive responses to it. And then I actually quite enjoyed my 'Sinead O'connor' look as most called it. There is something weirdly freeing about being able to shave your hair off without looking like you are having some sort of breakdown. The children really helped too.  I was expecting them to be embarrassed of me. But it was just unblinking acceptance from all of them, as if it was normal. That is what my  husband Ben gave me as well - complete normality. I had genuine concerns about him recoiling in horror at me. But it was just...normal. And that is all I needed. 

    Of course, hair doesn't grow (or fall out) uniformally. So the short shave was fine, but as more and more went you end up with this patchy baldness which is less palatable. So then came the onslaught of hats. 

    I am definitely not a hat person. So adjusting to having to wear something most of the time has been hard. Luckily it is winter so the weather has helped. There is a whole world of headgear for chemotherapy patients, and I purchased many different types of hats and turbans and scarves. But I have ended up using only a very few - a trusty bobble hat for my outdoor walking and a couple of turbany things for indoor wear. And most of the time inside I actually prefer to just be bald. 

    I do own one NHS paid-for wig, which I have developed a love-hate relationship with. The first time wearing that out in public felt utterly mortifying - I was so self-conscious and the wig felt massive on my head. Once I got more used to being in hats, it actually became easier to wear the wig. My friend Emily advised to just consider it as a hairy hat and that helped. I haven't worn it much though as it still feels quite alien and I am outside in the Norfolk wind a lot, but serves a purpose on occasion. 

    I've been lucky so far in that I have retained my eyebrows and most of my lashes. They may still go but I am a good three quarters through treatment and they are hanging on in there. I think if they go / had gone this period of my life would have been much harder. I remember lots of people telling me that losing the brows and lashes was more traumatic than losing head hair and I can completely understand that. 

    I wanted to use this whole experience to learn about myself and about what is important. I have learnt that hair doesn't matter so much. What matters is having friends and family who love you for who you are and not what you look like. It sounds simple really, but until something happens that changes how you look in a dramatic fashion you don't experience it. I am still me! (cue 'This is Me' from the Greatest Showman!) 

'I'm not scared to be seen

I make no apologies, this is me'

Lizzie Wright, BRiC member

Misery Blog

 

I've had a realisation that tonight, right now, is the most unhappy I have ever been in my life. I am in hospital, I have significant amounts of drugs circulating my body, I am neutropenic. I have terrible back pain caused by one of the drugs I am being given to stimulate my bone marrow. I can't sleep. I'm having night sweats and nightmares. I am just waiting for the morphine to kick in and hopefully knock me out. I've got another 5 months of chemotherapy to go. I'm about to start losing my hair. It is Friday 13th December 2024. 

    Just 4 months ago I was happy. Newly married, settled into country life in Norfolk.  Fit and healthy having lost 3 stones of weight. Making new friends and nurturing old friendships. Then wham. A cancer diagnosis out of nowhere like a bomb going off under my feet. 

Here are the drugs I have taken in the last 10 days:

epirubicin and cyclophosphamide (chemotherapy)

dexamethasone (steriod)

ondansetron (anti-nausea)

Omeprazole (to help my digestive system)

Filgrastim (to stimulate production of neutrophils)

Goserelin (Zoladex)

Zoledronic Acid (bone strengthener)

Co-Amoxiclav (antibiotic)

Morphine 

    For someone who took nothing prior to all this happening, bar a paracetamol occasionally, this list feels shockingly big. Add to that multiple cannulas and blood tests.

My body feels utterly violated. 

    I am being slowly poisoned by the chemo. From the day of that first infusion, I could feel it inside me. My skin started to feel strange, my scalp was tender. My mouth felt odd. It wasn't fast and sudden, no terrible sickness or reaction. But just a long, slow poisoning that will continue for the next 5 months. The day of chemo I felt fine, relaxed really. But now, thinking about having to go back on Christmas Eve for my second dose and watching the bright red drug be pushed into my veins fills me with slight horror. 

    After chemo you are sent home with a big bag of drugs to take for the following days to help manage the side effects. The worst of these is Filgrastim as it involves self-injecting into the stomach, never a pleasant experience. 

    A week after the chemo I was back in for my first hormone treatment - Zoladex. This is a fairly nasty injection of a sort of slow-release pellet into the subcutaneous tissue in the stomach. A friend described the needle as a 'capri-sun straw'. She wasn't wrong. The Zoladex works to suppress the ovaries and stop my body producing oestrogen, bringing on menopausal symptoms. Hence the night sweats and hot flushing, skin flare ups and all the other joys that may come with that. I am 47 so menopause was probably around the corner for me, but I wanted it to be a natural process, for my body to move into its next phase of life when it was ready. Not to be forced into it with urgency and immediacy. 

    The day after Zoladex and Zoladronic Acid (an infusion to help strengthen the bones due to the Zoladex raising chances of osteoporosis), my temperature spiked. I had to come back in to hospital for urgent blood tests. These showed that my white blood cells (neutrophils) had plummeted to a dangerously low level leaving me at high risk of neutropenic sepsis as I would not be able to fight even the natural bacteria that sits in our bodies. So I have been put on IV antibiotics and fluids,  additional injections of filgrastim to boost the neutrophils and shut away in a sterile room to recover. I thought I had tolerated chemo 1 pretty well all things considered but it turns out the dose was simply too high for my body to take, so that is now being reduced by 20% for the next lot. 

    And here I now am, wallowing in my own misery and marvelling at just how quickly my life has changed. My longest hospital stay since I gave birth to my beautiful daughter nearly 16 years ago, and not the  return to work after chemo I had hoped for! 

    Today it feels difficult to find a positive to end on. But I can say this much - I have met people who are experiencing so much worse than me. Younger women facing the potential of life without being able to have children. Of double mastectomies and hysterectomies and weekly chemo sessions. There are people who need cancer treatment and can't have it because their bodies are not strong enough to cope. So really I am lucky to be where I am and one day I will make my peace with that. For now I will hold on to the fact the staff at the hospital have been as amazing as ever, I am being so well looked after. And I get my own room! So it is sort of like being in a hotel but one where you get asked about your bowel movements whilst eating your lasagne.

Lizzie Wright

Tamoxifen or Tamoxibollox

 

Our discussions about Tamoxifen and other hormonal treatments for breast cancer are among our most commented upon.

    In medical circles, Tamoxifen is described as ‘well tolerated’, particularly in comparison to harsher treatments like chemotherapy and radiotherapy.  Very often, once our active breast cancer treatment finishes, we are then sent off into our futures with a packet of pills. The message we are given is that we are now “well” and we can carry on with our lives. Our experiences point to a very different reality.

    There is substantial evidence to support the effectiveness of Tamoxifen and aromatase inhibitors (Letrozole, Anastrozole, Exemestane) in preventing a recurrence of breast cancer. These drugs work by eliminating estrogen from the body, thus providing protection against estrogen fed cancers. It’s important to bear in mind that there are many different types of breast cancer, and each of us will have her own individual treatment regime. For those cancers that are not estrogen receptive, such as triple negative breast cancer, there is no equivalent ongoing drug, which can leave those not taking medication feeling unprotected and vulnerable. 

    We are struck by the struggles that some women experience on adjuvant hormonal therapy, with some of us suffering significant adverse side effects. What baffles us is not only the lack of support and information available for women prescribed these treatments but, for many, the lack of recognition given to the cumulative impact of these effects on our quality of life. Since many of us are now given hormonal treatments for 5, maybe even 10 years; that, we agreed, is a long time to be taking tablets that make us feel so unwell. 

    For those of us who tolerate these drugs well, there is a significant comfort factor in knowing we are doing all we can to prevent the recurrence of cancer, although it needs to be remembered that taking these tablets can be a daily reminder of breast cancer.  For those of us who suffer side effects that compromise their quality of life, this can present a huge challenge. The list of side effects is varied and long and may include: menopausal symptoms such as hot flushes and bone, joint or muscle pain, mood swings, fatigue, weight gain, vaginal dryness and impaired cognitive function to name but a few. Many women reported feeling below par all the time, and unable to fully enjoy life as a result. As a lack of estrogen may affect bone density, this needs monitoring and is a further worry. 

    For some of us, the side effects are so bad that we cannot tolerate these treatments, and so in consultation with our oncologists, we experiment with different versions of the medication, and we try to address the side effects with counteractive treatments. But this happens over months, even years, at a time, and the longevity and relentlessness of it all becomes mentally challenging. For a few of us, there comes a point where we just feel so awful that we decide not to continue taking the drugs. 

    The difficulty is that, for these women, there just isn’t enough help in managing the side effects. Our appointments are few and far between and all the while we are expected to be fully functioning members of society – we are employed, we are mothers, we are partners, we are carers, we are volunteers - so how are we meant to maintain all that when coping with terrible side effects every day? It is a shame that women give up these drugs without being given enough proper support, which may enable them to feel better and find that they can keep going after all.

    How we asked, does Tamoxifen work, and how does it impact on the brain?

    Naz explained that Tamoxifen inhibits the absorption of estrogen to cells that would otherwise be nourished by this hormone, especially brain cells which need estrogen for healthy cognitive functioning.

    She told us that there is evidence that frontal and temporal structures of the brain are affected most. These areas are involved in everyday memory, our executive functions that enable us to ignore distractions to focus, switch between tasks and update information in working memory.

    Tamoxifen, Naz explained, has also been known to interrupt “neurogenesis” which refers to the process by which the brain forms new neural connections and re-generates itself.

    Naz told us that overall, research conveyed the simple message that Tamoxifen can contribute to impaired cognitive function. While the evidence can be mixed at times, the general story conveys a similar message in both post and pre-menopausal women.

    We know that the brain shows under-activity in areas that support healthy cognitive functioning when active treatment ends, but then at times it has shown over-activity to recruit resources that are needed to support daily functioning. Ultimately, more research is needed to see what we can do to keep the effects of Tamoxifen and/or Aromatose Inhibitors on cognitive function to a minimum.

    In terms of the impact on our cognitive function, the above explanation translates to the following symptoms: a foggy brain, forgetfulness, poor concentration, lapses in attention; many of us experience slow processing speed and difficulties in relation to retaining information, particularly our short-term memory, our 'working memory' by which we mean holding one task or piece of information in our mind while completing another task, and, with our 'executive function' which is 'the CEO of the brain' because it involves those skills which allow us to set goals, plan and get things done.

    Sometimes our mistakes are small and we laugh at ourselves, but more often our confidence gets undermined and we worry about our ability to function, that we might be seen as incompetent at work or that we are poor company.

Brands make a difference

 

“I was shocked at the difference a brand could make.”

    There appears to be widespread, but largely undocumented, experience in relation to the way that differing brands of hormonal treatments can lead to a significant increase (or decrease) in particular side effects. 

    While Tamoxifen is often described as a ‘well tolerated’ treatment, particularly in comparison with harsher treatments like chemotherapy and radiotherapy, it is not helpful to view hormonal treatments as the ‘soft option.’ Our members regularly report a wide range of debilitating side effects, including joint and muscle pain, hot flushes, disturbed sleep, poor sexual health and, as we know from previous discussions, impaired cognitive function. Less recognised is that very many of us find these side effects increase, or decrease, depending on the brand of medication.

    Our experiences as a group were wide ranging, both in terms of the named generics we had been offered, and the way we responded to them. The main brands of Tamoxifen used by us were manufactured by RelonChem, Wockhardt, Genesis and Teva. 

    A picture emerged where many of us had noticed specific and unpleasant side effects due to changes in our brand, but also that these effects varied considerably between us. For instance, some of us might find one brand made us feel so sick that we could not take it, another really caused us to experience vaginal soreness, or yet another caused an unbearable increase in our hot flushes. 

    

    Although no one brand stood out as being preferred by the majority of us, it became clear there is significant impact on us if our brand of medication is changed. Whether this is because we become tolerant to certain brands after a time (so it's the chopping and changing that affects us) or it’s the fillers used in the brands themselves that affect us, is unclear. 

    Those of us taking Aromatase Inhibitors like Letrozole, shared similar effects, although here a huge variation in cost also plays a part in availability and willingness to prescribe. A few of us shared that we experienced no discernible changes between brands, however, for the vast majority of us, these variations had a negative impact on our health and wellbeing and in a few instances, these side-effects could make the difference between continuing with our hormonal treatment and stopping it altogether. Many advised that it is well worth anyone struggling to manage side effects to consider changing their brand to see if it becomes easier to tolerate.

    Given the proven effectiveness of hormonal treatments, and the increasing longevity of prescribing regimens, we felt that our experiences needed to be taken more seriously by medical professionals.    

    A few of us found our pharmacists and GPs sympathetic to the variations in our response and that they were willing to try to help us to source our preferred brand. Others reported finding their experiences were completely dismissed or were told that it was simply not possible to source one brand on a regular basis. Sometimes, despite the support of both GP and pharmacy, particular brands become unobtainable for no apparent reason. 

    In the absence of research, some of us had developed our own theory for the wide variations in side effects, even going as far as listing brand ingredients to use as a basis for comparison. The most common hypothesis among us was that different manufacturers use different fillers – coatings, for instance, and it might be possible that that these different ingredients subtly affect the way that the medication is being absorbed by our bodies, leading to significant changes in our tolerance to side effects.

    Interestingly, this phenomenon, whereby patients experience a tolerance to one brand of medication, seems to be more widely accepted in relation to other conditions. For example, some members reported having more success in obtaining continuity of brand treatments for epilepsy and even HRT.

    As far as we were aware, there is no standard protocol in place in relation to the brand of medication we are prescribed. Indeed, several of our pharmacist members very helpfully explained that GPs are trained not to specify a generic manufacturer (although some do) due to the expectation that there is no difference between generic brands, and that most of us won’t be aware when an off-patent drug is prescribed. Quite reasonably, on the face of it at least, the expectation from the NHS is that pharmacies should be using the cheapest brand at any given time to protect our cash-strapped health service, which then also makes it difficult for pharmacies to offer their patients any continuity of a particular brand. 

    Many of us did not know that even if our Oncologist specifies a particular brand, for instance if we request it due to intolerable side effects, that it is actually our GP, as the person in primary care, who is responsible for our prescribing. Finally, some of us (hesitantly, because the focus of our group is the psychological impact of breast cancer, not politics) expressed concern about the possibility that Brexit may cause supply difficulties which in turn may mean that we may increasingly face being given different brands of generic medication than we are used to.

    We would like to know why it is that different brands have different effects across individuals? Why it is that ingredients are different across brands? Our resounding conclusion was that this is an area where more research and information is needed.

Coping with breast cancer news

 

How does hearing about cancer in the news impact on us?

    In our discussions, we thought about how we cope with news stories and information on social media about breast cancer.

    Our varied responses fell somewhere on a continuum between two positions; first was 'avoidance', where we cope by completely avoiding any information relating to cancer. At the other extreme is what we might call 'immersion', where we cope by seeking out as much information as possible - leaflets from the hospital, BBC news, (Breast) Cancer research, charities and website upon website. But if we can achieve a middle ground, by gaining an understanding of our situation, we can empower ourselves to understand some of the complexities we face, for example, the 'scientific' basis for risk-reducing surgery. However, we fully understand that finding a balance is difficult and we risk being bombarded with information if we aren't careful. 

    So, delving deeper into our need for knowledge, it's generally in our nature, as human beings, to search for explanations. Answers and information can help to make sense of what has happened to us. It's not surprising, then, that when we try to find out possible ‘causes’ for breast cancer, we can become overwhelmed with information about risk factors; diet, exercise, alcohol, weight, stress, etc. and we can find ourselves drowning in an ocean of mixed messages, opinions and facts, released by different sites.  Whether we have primary or secondary breast cancer, we are particularly sensitive to (any) information relating to the causes and prevention of breast cancer as well as factors aiding and prolonging survival. The headline, "I had alcohol-related breast cancer. Here’s why I still drink", for instance, carries the implication there was something we did, or didn't do that led us to develop cancer. We ask ourselves 'could I have done anything to prevent it?'. It makes us feel responsible.

        We need our families and the wider community to understand how sensitive we are to information and the way that breast cancer is portrayed in the media, the way it creates unhelpful stereotypes, unrealistic expectations and misleading headlines. Very many of us are distressed by well-meaning but highly emotive adverts by the big charities - ironically the very organisations seeking to raise awareness and offer us support! Likewise, some of us felt ambushed by the prevalence of cancer across all platforms – maybe from the topical cancer storyline in our favourite soap opera or the triggering sub-story in a new film.

        Our psychological vulnerability increases our sensitivity and, given that our fear of recurrence and fear of progression of disease loom high, we are vigilant for any detail we can use to our advantage, to help us survive. Our fear can drive us to grab with both hands any new developments, whether in progress or substantiated - they mean a lot to us. Friends, family, and colleagues are keen to convey their information, and social media has a cunning way of portraying the best and the worst awareness campaigns in a relentless narrative.

   So, how can we work around these issues which are so important to our survival, yet that come with such mixed messages?

    Naz told us that science is not always exact, it comes with a margin of error. She explained that problems with replicability and the reliability of trials are not unknown. A lot of people have lost their faith in medicine, because its growth is slow and its effectiveness questionable - though Naz pointed out that 'proper' science grows slowly and steadily. Talking through it together can help, and sharing source study references, so we’re seeing information from the original published paper, not a watered-down news report full of errors. This way we can fully assess the quality of each study and its outcomes.

    In an ever more complex world, we must learn to navigate this vast sea of information, choices and options open to us, while trying not to get ourselves into an anxious state of mind where another layer of fear and apprehension follows. When we look at it from this perspective, it’s no wonder that some people shut down and don’t want to know. It can be far too much to cope with.

Cancer anniversaries

 

"Cancer is not only a date in our past, it is an experience we must take forwards with us. Whether we like it or not we must find a way to live with the uncertainty that becomes the background music to our lives. We take with us the myriad emotions of cancer - fear, helplessness, loss, despair, anger - whose voices become louder and louder when we are at our most fragile."

We all agree that our diagnosis anniversaries can be very problematic, especially when we are called back annually for mammograms and other tests.  The general feeling from others is that the longer we go “cancer free”, the easier it should become, and we are expected to celebrate each anniversary as real achievement. However, as each year goes by, it can add to our sense of dread and uncertainty about our future.

We share two pieces from Naz here, at 12 and at 10 years post diagnosis, followed by two poignant quotes from previous blogs… Remember that we understand, and you are not alone. By talking about it, we can help others to find their voice, too.

Why Me? Hope, Fear and the Survivor’s Guilt

Today, Jan 2nd, 2024, is exactly 12 years since I was told: ‘I’m 99% confident it’s cancer but the biopsies and further tests will confirm’. It was the perfect opening of hell to 2013, though it dawned on me that I was comfortably numb, as I greeted my 2 year old daughter with smiles and hugs when I got home. It wasn’t me who had cancer, it was Naz.

Our memories serve many purposes. One of them is to reflect on the past to build a future. In these 12 years, my memories of the roller coasters adjusting to the ever changing symptoms I have experienced have served to understand the moment, not the future. The future is the moment, and strangely enough I have implicitly planned for the future navigating my way through the dark times with hope. I have learned that hope is survival and survival is hope. If this logic is true, perhaps I am living the future.

To live with hope is not a crime or a gift when you have been diagnosed with cancer, but a human right. The other side of the coin though is fear. While we live with hope we also live with fear that the cancer will return and we may die. This is not unusual as fear is essential to survival. If we didn’t fear danger every time we crossed the road we would not survive.

Approximately 30% of women with a breast cancer diagnosis experience return of cancer where the original cancer comes back, i.e., it metastasises to other parts of the body and is incurable with a median life line of 3- 5 years. Many of the women I got to know in these 12 years of my 'survival' so far are no longer here. They lived in hope as well as fear, just like me, they didn’t lose a battle or a fight, they did their best just like many others who are still here.

When you can’t quite explain why some of us die and others ‘survive’ this disease, it could be a combination of many factors which scientific research is trying to figure out, but you end up worrying and fearing your chances. You also experience what we know as ‘survivor’s guilt’. Strangely enough you are puzzled about your own survival and can feel guilty for surviving when others, just like you, have not. I can count endlessly the women who one by one left us too soon, sometimes suddenly without much notice. My stomach churns and I feel a cold sweat on my forehead when I look at some pictures and question why am I the only one here in person. How did this happen? Why? It was not their fault.

12 years is a long time, but as time ticks along I am fearing the return of my cancer in waves. Sometimes the waves hit the shore loudly raising alarms other times the waves don’t quite reach the shore and disappear quietly. But, I know that the space between hope and fear can be small. I know that I cannot determine how the waves change in movement. I feel guilty for not being consumed by the waves, I miss my friends and so dearly want to see them. So many thoughts cross my mind and it gets confusing.

I think of all the work I've done on anxiety and depression all these years, all the work we do in BRiC, all the research we do to better lives to improve resilience, all the women we've united, all our plans, there is so much left to do. And we will until we can.

I decide to stand and readjust so that the waves only touch what I can afford to lose, for now, and walking towards my aims, I let my tears melt my hopes and fears into one.

I am dedicating this to all of BRiC's amazing members.'

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10 is a two-digit number, although the 1 is a bonus

Reaching 10 years of age when you are a child is certainly a big deal. Celebrations are special and it can feel you are entering a new era. Excitement grows as to what the teenage years may bring, which of course are super challenging. The changes you experience build you up for the future: the world can be your oyster, so many opportunities, so many more decades to come, so many more milestones. You kick off the ground, running (possibly in more than one direction).

Yet, when you reach your 10-year cancer anniversary you are stumped with questions. Even with your gratitude cloak on, this was not expected. 10 years? Really? I should be so lucky, you think.  This special milestone. You hear people around you are congratulating you, giving you the thumbs up, and saying that ‘you made it’. ‘No worries now; ‘Well done’; ‘You must have been doing all the right things’ and you may ponder...am I responsible for this ‘success’?

Today, as I reached that 10 year ‘milestone’, I found myself a mixed bag of emotions, low and high within minutes, tearful and happy within seconds, a roller coaster. I found myself questioning, why me? My brain took me back to all the women with the same diagnosis as mine 10 years ago, whose life was taken by breast cancer too young too soon. They did all the ‘right things’, yet they were robbed from the opportunity to spend Christmas and New Year with their children. They were denied the fun to go for a long walk today in the sun and make memories with their family. They were denied the joy of having your amazing daughter make you proud on so many levels. Why me? I asked. Why them? Why are we in a position where we still have so many questions unanswered? My stomach churns and I feel anxious.

While 10 years is certainly a long time post breast cancer diagnosis, I find myself not so excited about what the next 10 years can bring. It's about one day at a time. It's about hanging on to the moments and embracing them. The excitement is mixed with grief and fear that the cancer can raise its ugly head again. It is so easy to compare yourself to the statistics, after all the numbers can guide us. 

The numbers show that 30% of women with early-stage breast cancer go on to develop metastatic breast cancer which is incurable. Yes, the likelihood of metastasis is greater within the first 10 years, but it doesn’t rule out many cases diagnosed after the 10 years. 10 years of dealing with side effects of breast cancer treatment and adjusting to our new normal leaves a bittersweet taste in our buds. We want to thrive not just survive, and we do everything we can to live life to the fullest, but with a psychological cost which can linger for many years.

The psychological cost of breast cancer diagnosis and treatment runs high, and the past 10 years has seen my lab work harder every day to find better ways to build resilience in a population who through no choice of their own endeavour the emotional roller coasters with dignity, perseverance and determination. From all the research I’ve ever carried out on understanding the roots of emotional vulnerability and resilience in my entire career, never did I learn so much resilience from women whose breast cancer was incurable. We are tough, we are strong, but the strength isn’t the kind you think it is, we are not made of iron, we are made to bend and not break. This is what BRiC, the centre I found, has at its heart and mission. 2118 women and counting, we are providing a safe and educational network to learn, share, and help each other grow. Research guides the way, but our determination can make it happen. 

So, as I usually do, I will end tonight on a high note. That while I do not know what the next 10 years has in store for me, I will nevertheless make a list of all that I want to achieve and more. Because, you know what, we are not guaranteed life, every day, every breath, and every moment, is a bonus. 

This piece is dedicated to all the women who did not see beyond the 10 years.

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“While cancer anniversaries are hard to entertain, they are reminders of who we are and how far we’ve come. The past becomes the present, stepping into an uncertain future determined in part by its past and an ambition to survive to the best of our ability. The fight to survive becomes more pertinent, as does the necessity to practice resilience, exercising flexibility and adjustment.”

"So here we are 366 days on, a year of ups and downs, but life does move forward. There are times when I forget for a few hours, feel normal even, then other times when I cannot shake off the waves of grief and anxiety surrounding what is facing us. It’s a bittersweet moment, because of course being here is cause for celebration, but there’s sadness too as it’s an anniversary which brings our sense of time into sharp focus. Our mind starts to be drawn to the future as well as the past".