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.

Eva's story

 

Just writing this makes me shake, it feels like picking at a scab that is not quite ready to be picked, it feels raw and something I just wanna leave well alone under the half falling off plaster. But maybe, just maybe it will help someone else so here goes.

I was diagnosed just past my 39th Birthday in 2013, I had two young daughters who were, and still are my heartbeat and soul, they will always be my 1st priority in all of this, the fear starts there, with them, the fear of not seeing them grow, the fear of not being there for them for their life events, the fear of what sort of heartache I would give them at every little life event that was supposed to be ‘the happiest day of their life‘ if they didn’t have mumma bear in the corner roaring.  It really hurts.

It even effects my ability to plan - I think every decision is tempting faint in some way, it is not logical but it is there on my shoulder annoying me like a wasp by my beer I was enjoying, it just won’t go away. I just keep swatting it and take a gulp.

We have a saying in BC sisterhood called scanxiety, and we all feel it every time we feel a twinge a tweak or a lump, we poke the hell out of it for two weeks hoping it will ‘go away‘ (I am being very polite there with my ‘wording’) I have had quite a few of these moments and always get told to keep still in the scan - my reply is always the same, “I thought I was“, I am physically trembling with sheer fear.

Loosing my close BC buddies whose C returned as a secondary is also extremely sad and a cruel reminder, I watched their ‘friends‘ drop off, I watched their bodies slowly be destroyed and I listened as their brains processed the overwhelming powerlessness that they felt. I miss you all so much. I write this for you my dear friends.

So how do I deal with never being told ‘all clear’ I can only speak for me, I try and connect my other senses, I smell, touch and feel things more to make my brain pathways run somewhere else, it does work but like riding a bike, it takes practice and sometimes I fall off spectacularly.

Kindness, love and gratefulness (here comes the hippy stuff, I promise I don’t have it as a decal on my kitchen wall) kindness to myself and my endless self jabber, love, all you need is love, love of life experiences, love of little moments that make me happy, love of my friends, family and animals (just call me Snow White, but I don’t clean after any man let alone 7 of them) Gratefulness, I have got this far, it is so precious to me.

Try and do all of it I say, just jump at decisions that feel right in your gut and heart, not in a hedonistic way but in a way that gives you peace, tell the people you love, you love them with all your heart especially those who have been through a life threatening disease, let go of the ones who don’t love you how you want to be loved, you don’t need them, go into nature and feel the power of Mother Earth, experience new things, embrace all the happy moments and keep them close to your heart and mind, grab this beautiful life by the both hands and do a one, two, three, wheeeeeeeeee because it is so, so precious.

 

Jane's story

 

For me its not necessarily the fear of recurrence, as that has happened once already, but it’s the fear that if I have a recurrence again I won’t be able to cope with it.

    I keep telling myself that everyone has to die at some point - but I don’t think its the dying that worries me - its the living with cancer that terrifies me. 

    All the appointments, the lack of control over my life, the constant reminders of cancer on the TV and radio, the worry in my partner's eyes, the looking away in the eyes of my friends, the awkwardness of my new body shape, the ugliness of my mastectomy, the shame of being a survivor, the constant worry of every ache and pain, the cough that won’t go away, the aching hands and feet because of the Anastrozole, the niggly headaches, the self-pity, the sleepless nights, the visits to the hospital, the constant need to do stuff now in case I can’t do it later, the restlessness as I don’t want to waste a minute, the stupid box of boobs in my wardrobe, the fixed smile on my face when I don’t feel like smiling inside, the favourite dresses I had to get rid of, the constant checking ……..the list is endless.

 

    Above all these things is the question… What did I do wrong that my own body turned against me?

Katie's story

 

It is nearly three years since my initial diagnosis (stage II, 13mm, HER2+); and two and a half years since I completed primary treatment (surgery, chemo, radiotherapy).

My hair has grown back (chemo curls!), and the horrendous foot pain has subsided. I have started running again and sometimes I feel that I am thinking more clearly again (remembering names etc).

A daily little pill (aromatase inhibitor, exemestane) and a six-monthly infusion of zoledronic acid are however, ever-present reminders for me (invisible to most others). I still occasionally feel inexplicitly fatigued on some days and experience crippling hot sweats that make me cringe with embarrassment.

I found the whole cancer experience interesting and it has given me a new perspective. I would not have chosen this path of course, and I didn’t like being the centre of attention and well-meaning enquiries from family and friends. The ongoing post-pandemic fear of covid interrupting my treatment gave me the excuse to hide away from the world at large.  I appreciated the kindness and professionalism of the medical team; the quiet unfussy support of my husband; and the company of key friends. I pushed through the treatment. I wore my PICC line as a talisman to protect me. I was fortunate not to have work or children to care for and although there were sickly, difficult times; there was also a chance to enjoy nature and forge new connections.

Cancer support groups are scary. You meet the dying and the sick. That won’t be me: I won’t need chemo (but I did), I won’t get a recurrence or metastasise (but I might). Like all ‘clubs’ there are people you like and people you don’t get. I am hugely grateful to the cancer nurse who organised a small coffee morning to introduce people of a similar age and a similar journey. We supported each other through the main swell of treatment. Some of us forged lifelong friendships.

Newly diagnosed friends of friends get in touch, and I am always happy to walk and talk and share my experiences. For me: forewarned is forearmed but not everyone feels the same way. After my treatment I took myself off alone to a Nordic walking holiday organised by the amazing ABC Diagnosis. I was terrified by the storied I heard, felt myself a fraud for being ‘only’ primary, but I am so grateful to be armed with the knowledge of secondary symptoms and signs.

So far two manifest fears have prompted action: a lump in my armpit (mammogram and ultrasound, likely to be an internal stitch where lymph node removed); and backpain (blood test and MRI scan, likely to be strain from moving house!). I am relieved to be taken seriously and even more relieved to be checked out and OK (for the moment). Most aches and pains that keep me awake worrying tend to disappear within days and then I hardly remember what I was worried about. 

My last Zoledronic acid infusion is next month. A milestone. I am expecting my oncology check ups to move from six monthly to annual (all being well of course).

My husband has taken a sabbatical from work, and we have sold our house with plans to travel and spend time with worldwide friends and family and visit far flung places. Fear of cancer returning makes this seem risky. Fear of a shorter life makes this seem urgent and essential.