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? 

Lee's story

 

I  think there are many reasons to treat SBC (the diagnosis that I have) with a DENIAL approach. The reasoning being - I’m well today - so why not shut out the so-called ‘negative’ thoughts that now stalk me? 

 

And if I care (as I do- deeply) about the time I have left with my child and husband then I have a kind of duty to wring out as much happiness as possible from our precious moments left together - and push away those bad feelings that bubble under the surface. 

 

And if you appear to dwell too much on the sad realities of this disease you may be seen to be ‘giving up’ on living. Or worse than that - your ‘negativity’ may hasten your demise. Don’t we read all the time about breast cancer being caused by ‘being’ a certain sort of woman? The book by Gabor Mate explicitly links cancer pathology with disease. Thanks, for that Gabor - so I must have given myself cancer. Yes, these unhelpful ideas surround our condition. I've even had a friend suggest that I need to work on my 'inner unresolved' problems. Again this feeds into the 'I brought it on myself' narrative. 

 

 

So all around you - people encourage you to keep your ‘attitude’ in check.  At all costs - be positive. They praise me for my smile. Positivity is seen as the only possible armour in this situation.  But I am only human. And that smile slips. Behind it , I am grieving for the life with my loved ones that I won’t get to see. And behind their bravery - they are also brimming over with grief. And I feel lately a need to face the facts of my situation - even the ones that fill me with horror. 

 

I want to know how long roughly I have. Or I want to know what the stats say regarding SBC and women /my age/ my tumours. They don't like giving out this information. But I’m a big girl and I can handle it. I want to know things like: do most women like me die at home or in a hospice? Does the end come quickly? What length of time is NICCE's 'moderately severe' actually based on? Can they explain that to me?  

 

 But these are difficult things to say in the consulting room sat next to my husband. So recently, I wrote my doc a letter - asking that we address these shadowy thoughts (questions above) that I want the answers to. 

 

Could it be the oncologist and nurses want to ‘protect’ me from the upsetting facts of my condition? I don't know. They say - many women live for 20 years or more/ but concede that some women less so.  Then there are the 'google stats' - how true are they? How out of date. Who knows.  Where do they keep up to date information of this nature? 

 

 So what to do. The strength / self understanding/ worldly wisdom that is required to navigate this new landscape is immense. Often beyond me. Dealing with death sat on your shoulder in a society that treats it as an ugly taboo - further complicates things. And the medical profession - well - they are not set up to help you travel this end section of your life.  They deal with medical. If you cry they suggest pills or that you talk to someone. I told my doctor I think I’m having an existential crisis. Bless - he sort of just looked at me. I know I’m starting to be a difficult patient 🙂he suggested I  seek out a professional. But this comment suggests that my 'head' is somehow wrong.  

 

But…I don’t feel that my head/ thinking is ‘off’ or wrong. I can’t help feeling that my struggle to come to terms with it all - is maybe necessary and normal as I process and assimilate this new state of being.  I have had to learn to let go and to grieve whilst appreciating the life I have left. You can’t just flick a switch and do that.  You have to figure it out -  mainly by yourself.  Or you stay in DENIAL - bottle it all up and just get through it best you can.

 

So why isn’t there greater psychological guidance? A greater understanding of what we often privately go through. I wonder. This I would like to see changed- I think there is space for a new approach - that offers better guidance. That may prepare us for the tsunami of emotions we will encounter on this journey. 

 

Between us all - all the people who have died before us - there must be a 'collection of comforting wisdom' to pass on - to help all of us in our hours of need to make peace with death and prepare ourselves for the end - whilst making the most of the 'wellness' that the drugs give us up unto that point.  

 

We've dispensed with religion but then find ourselves in a secular society with an aching soul and need for spiritual balm. A bit of counselling doesn't really cut it in this situation. 

 

Maybe there is a place for death doula's?  Something like that?! Humanistic type spiritual healers - who help prepare you for the next life.