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.

Lizzie's story

 

My name is Lizzie and I have breast cancer (primary invasive ductal carcinoma, for those who are down with the lingo). Well, I had breast cancer. I am now post-op (lumpectomy), had clear margins and clear lymph nodes, so basically, it's all out. But my cancer, it turned out, was an aggressive grade 3 and further testing shows that I have a very high chance of recurrence. So now the plan is to throw everything at it - at me - to try and stop that happening. So now, 2 months after spotting that innocuous little lump near my armpit, I am on the brink of the long slog that is chemotherapy, then radiotherapy, then 10 years of hormone treatment.

A cancer diagnosis is a weird beast. It's FAST. So fast you hardly have time to think. The speed is interspersed with periods of waiting - waiting for biopsy results, waiting for the operation, waiting for more biopsy results, waiting for oncotype test results. From point of finding the lump to today with all results in, it has been 2.5 months. And everyone is just so nice - friends and family rally, the breast cancer nurses are lovely, work have been incredibly understanding. But it's a strange feeling because I am not ill. I feel fine physically. I almost feel like a fraud with everyone sending me good wishes and get well soon. Maybe I should feel ill? Should I have been more affected by this diagnosis? More worried? I am fine, the lump is gone, I have no more cancer. It was all good news...until last week. 

The final result I was waiting for was something called an oncotype test. This determines how the cancer cells operate and they can work out from that how likely a recurrence will be. Any score over 25 meant definite chemotherapy to increase chances of staying cancer free. Anything between 16-25 would mean a discussion with the health care team as there may still be some benefit to chemo for someone of my age. Below 16, no chemo. My score came in last week - a whopping 56. Suddenly, this diagnosis has taken on a whole new meaning for me. Chemotherapy, that most dreaded of treatments. The thing that suddenly makes you into a cancer patient. The treatment that makes you ill. I had said from the start 'I can cope with most things, but I don't think I can cope with chemotherapy'. And yet, here I am standing on the cliff edge of chemo, ready to throw myself off. 

The reality has hit me like a ton of bricks. My relaxed attitude to cancer has changed overnight. The realisation that I have a disease which can come back for another go, and can kill me, is hitting hard. I was merrily swimming along having a lovely time but have suddenly been pulled into a rip-tide, dragging me uncontrollably somewhere I really don't want to go.

I am trying to establish if it is a good thing that I am fit and healthy and cancer-free, or whether it would feel easier going through chemo if I really needed to make a tumour smaller or zap my lymph nodes. Instead, I am due to offer up my healthy body to be poisoned. It is quite a hard situation to process. At the start of this I tried to be positive and thought ‘well if I have to lose my hair, at least I will get new hair’ – I’ve never particularly liked my hair. But now the thought of even having it cut short (a ‘pre-Chemo’ cut) is sending me into a panic. I am normally a positive person, I am strong. But right now I feel pretty down about what I am about to go through. Worried that it is going to be life-changing in a negative way. Worried about how I will look and feel. All the things many women before me and after me have felt and will feel. No matter how resilient I am, or people perceive me to be, the worries about the impact of this treatment are very real and all-consuming. 

It has been so helpful to have the ladies of BRiC to lean on for advice and support. I am gathering tips to help me to prepare for what is to come, and hearing advice from those who have been there and done it is invaluable. All I can do now is trust in the science, be brave, do everything I can to minimise the impact and launch myself into this next gruelling few months of my life.

Diane's poem

 

A FRIEND IN YOU?

 

Why did I make friends with You? You caused me pain, Heartbreak and sadness You made me cry, You made me angry, You gave me sleepless nights And stressful days.   I don’t want You, I don’t need You, I didn’t invite You into my life, So why did I make friends with you? Unwittingly You brought love, kindness, Friendship and laughter.   I know that You are cruel, I know that You are evil, I know that You may cause havoc And chaos once again So why did I make friends with You?   You chose to come into my life, You’ll always lurk in the shadows, But I chose to make friends with You. Now You have no control over me That’s why I made friends with YOU!

 

Jan's story

 

I didn't really feel afraid when I was told I had breast cancer. I was so focused on the next steps I didn't have time to be afraid.

 

The fear crept in as the weeks and months of treatment passed. As I began to feel I was beating this thing I also began to fear that it might come back. A gentle, quiet, whisper of a fear at first. The whisper grew into a shout by the time my active treatment was over. 

When my medical team waved me off with a box of tablets and I was cast afloat on my own, the fear was suddenly screaming in my ears. Every ache and pain brought a shiver to my spine “was it a sign of recurrence or spread?” Every headache was mets in my brain; every aching bone, every cough, every stomach ache, every itchy spot… It was exhausting constantly living in a state of fear and anxiety.

Gradually, with time and the help of my BRiC family, I learned to live with the fear, to let it babble away in the background without it constantly interrupting my life.

 

Now, 12 years later I seem to go through long periods where I don't really think too much about breast cancer recurrence or metastasis. That's not to say I've forgotten about it, but I've noticed over the past year or two that it is starting to take a back seat. Having said that, I do have days when it rears its ugly head and the fear becomes overwhelming. 

 

My particular type of breast cancer is known for reappearing 10 or 20 years later, so now I'm in that “danger period” but I try not to let the fear intrude. I am conscious of my body, I watch out for signs and take care of myself, but I also enjoy my life.

 

I know fear is an important emotion, it protects us from doing risky things, it tells us to run away and stay safe. But I can't run away from my own body, so this fear isn't good for me, I try to keep it to a whisper as much as I can. 

After all, after going through the trauma of treatment what would be the point of living a life crippled by fear?