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.'

*********************************

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.

----------------------------------

“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". 

Financial Difficulties

 

“The long term impact of reduced earning capability is an added stressor that makes me feel anxious and vulnerable”

    There are many hidden financial implications of a cancer diagnosis that are rarely called out. At a time when our ability to earn is reduced, the extra costs hit us as a double whammy. A lengthy treatment regime and subsequent recovery means we may need to extend our sick leave beyond that which our employer will support with sick pay, we may not be able to return to work at the same income level after treatment, or at all. It is common to move from full time to part time, to change careers for something less stressful. Self-employed women may be left without income for a considerable period and small businesses may suffer beyond repair. 

    For those of us with primary breast cancer, the trajectory of recovery isn’t linear and we continue to take our cancer ‘effects’ forward with us. Post traumatic stress symptoms can linger for a long time after diagnosis. With threats to our self-esteem and self-confidence, the variability in our recovery and our change in priorities due to the uncertainty we face, we remain at a disadvantage and continue to be at a higher risk of long term financial insecurity. Fatigue is another big factor as at times even if we want to continue what we love doing, we can’t, and we have to take a step back.

    Those of us with secondary breast cancer described how financial uncertainty caused additional stress and worry which impacted on both our physical and emotional well-being and our ability to pursue our goals, especially for those who had been forced to give up much-loved careers. Although those who could work part-time (depending on their role and the support available) shared how important this was in terms of finances, many felt that work was just not something they could contemplate, especially if they were on an intensive treatment plan which might require daily appointments at the hospital.

    Returning to work and continuing to work can be fraught with problems, with some of us struggling on short, phased returns with little management support. As mentioned above, fatigue is a long term after effect of cancer and sometimes this can be debilitating. Those who do successfully return to their old jobs may no longer be wanting or have the energy to put themselves forward for promotions or career progression.

    The additional costs of having cancer include: travel costs to our treatment centre, parking costs, hats and scarves and wigs for that time without our hair during chemotherapy, pillows and pyjamas that open down the front for surgery, pure lotions to sooth damaged skin after radiotherapy, specialist bras for post-surgery and then pocketed bras and swimwear forever (which cost more than ordinary bras and are mostly ugly to boot!). 

    Exercise and eating well are key to our health, with many of us taking supplements, and maintaining a healthy lifestyle can be expensive. Travel insurance costs rocket up, particularly for women with secondary cancer, and life policies may become invalid. Getting further life cover and private medical insurance may be prohibited. Even those who had access to private treatment are still required to pay excess payments of hundreds of pounds. Being at home all day during treatment means heating costs go up, especially through Winter.  Additionally, some of us had paid for genetic testing which we were not eligible for on the NHS. This can be expensive, but so important for many wanting to understand future family risks. 

    A few of us had critical illness cover and income protection which had been an enormous help, but it's important to check the small print to check the limits of cover.  In an effort to secure extra funds, some have cashed in savings plans, including pension plans, or sold their homes to make ends meet.  ESA is available for some, and PIP, and prescriptions for all medications are free following diagnosis.  Some used annual leave instead of sick leave for the time off work needed, but this of course left no holiday time, which hardly supports a healthy recovery. 

    Cancer charities like Macmillan and Maggie's can be great, and many of us had relied on help and support to access appropriate benefits, a temporary reduction in household bills or mortgage repayments. Not all of us had positive experiences though, and some of us had been poorly advised, had benefit applications rejected and had to go through an appeals process, or had poor experiences with our banks and building societies.

    Having cancer can mean a permanent drop in income and lead to a necessary change of lifestyle.  For those who get by, luxuries like travel and overseas holidays may become a thing of the past. It may take years beyond diagnosis to return to financial stability. At its worst, cancer may bring with it real financial hardship, the stress and worry of which cannot be helpful to our reduced level of health and fitness. 

Even those with more positive experiences felt that the focus tended to be on short term financial help and advice during treatment. But what about the longer term?

    Some amazing entrepreneurial suggestions were put forward about ways to earn money but very many of us simply felt we did not have the energy to invest in anything other than trying to keep up with our usual routines and staying as well as we could.

    Being able to access to advice from knowledgeable and informed advisors, a reduction in outgoings and support from our families were just some of the factors which helped to increase our resilience. Those who were younger, single parents, carers, students, or had multiple health conditions appeared to face considerable adversity. It was clear that the challenges continued in the longer term. We continue to worry about what the future holds and how the financial strain will affect us further down the line.

 

Coping with Chemo

 

3/12/2024

So today is my first chemotherapy session: one down, 5 to go. It's been a long time coming so it feels like a bit of a milestone to finally be underway. So far it has all been much more straightforward and less frightening than I had expected - the brilliant staff at the chemo unit helped with that. I had also been on a bit of an impromptu visit to the unit last week with new chemo-buddy Kirsty who I met at a Skin and Make Up session last week. That had really helped to put me at ease for today so I knew what to expect.

Cancer is a very selfish disease. It consumes all of your waking thoughts. All I've been able to think about is what is happening to me. Cancer, and more particularly cancer treatment, affects nearly all aspects of your physical and mental health. It is all-consuming. That has meant that the long lead up to starting chemo (two and a half months after my lumpectomy) gave me far too much time to dwell on what was to come, to massively overthink each minute detail and possible side effect. It is mentally and physically draining. I have been most hung up on my hair - or the impending lack of it. This surprised me. I have never particularly liked my hair, or held it in much esteem. But the panic over it going, over eyelashes and eyebrows disappearing, has been intense. Hours agonising over whether to try cold capping (a fairly horrible treatment to try and retain some of your hair) or not. Crying over how stupid I look in hats. Freaking out about the thought of getting a short 'pre-chemo' cut. Following a lot of reassurance from my wonderful husband, we have decided together to embrace my inner-alien and just kiss goodbye to the hair for a while. I want to explore why I was so worried about losing my hair, and hopefully to come out of the other side realising that hair really isn't that important in the whole scheme of things. Cancer has a snowball effect. From my little lump, the snowball started rolling down a steeper and steeper hill...getting bigger and bigger.....lump, biopsy, cancer, operation, chemotherapy, radiotherapy, hormones..... I can't stop it. I have no control over what is happening. Just caught up in the forwards trajectory as it careers towards the next stage. One minute I was normal (ish), now suddenly here I am in a chemo ward having my first poisonous infusion. I've been through the stages of grief to get here: shock, denial, anger, depression. And then suddenly I found acceptance. I think it was the day I went for my wig-fitting - which was not as awful as I assumed it would be - and happened to be the same day I had my pre-chemo haircut. Thanks to my lovely friend Louise, what I had expected to be a traumatic occasion actually became quite pleasant and I loved the cut so much more than I could have imagined. From that point on I entered full preparation mode - drinking lots of water, building up my strength (by mainly eating naughty things!), moisturising like crazy, getting a manicure and a pedicure (dark nail polish can help to preserve your nails during chemo) and generally 'nesting'. That has given me some focus and distraction, and I hope will maximise my chances of getting through the treatment more easily.

It's all fairly awful. But there are some positive bits to all this. The hospital have been amazing - I've felt so well looked after, listened to and protected by them. And there is a simply fantastic community of breast cancer women all supporting each other. After my first oncology appointment, which was rather overwhelming and scary listening to long lists of drugs and side effects, the nurse gave me a box from a charity called Little Lifts (littlelifts.org.uk). Started by a lady who had been through Breast Cancer, the box is a gift of lots of things to help you get through chemotherapy. It was lovely - it felt like a hand had just reached out and held mine reassuringly, understanding. It meant a lot right at that moment. This journey has been peppered with moments like that. BC women are an amazing bunch and I know I will come out of this better having experienced that. Lizzie Wright

Reflections on my 12th cancer anniversary

 

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

Today, Jan 2nd 2025, 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.

Nazanin Derakhshan, Founder and Head of BRiC.