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. 

 

Corrine's story

 

Fear, the feeling that never leaves

 

First came the shock of diagnosis and anger as I tried to work out why me and how did this happen. Not being able to pinpoint a cause has been the root of much anxiety and probably where the fear first came from. 

 

Soon after diagnosis, my treatment began, I was scared about the impact of chemotherapy on my body which until now I had entirely trusted to look after me. As I signed all the consent forms, fear began to run wild inside my head, what if this doesn't work? what if you get these side effects? I don't want this, but if I don't I'll die. Oh my god I feel stuck, I just want to run away and hide. 

 

Then the chemotherapy began and went on for a long 22 weeks. I didn't feel as bad as I expected, although I hated all the drugs I was taking to combat the poisons travelling around my body. I soon noticed that the tumour was shrinking, positive news and a hint that perhaps things would be okay after all. 

 

At Christmas we were in level 4 lockdown so couldn't see anyone and strangely this was a good Christmas. I got a break from the chemo and the two of us had some quiet time together. My daughter called to tell us she was pregnant. How exciting, a grandchild to look forward to, ah, but would I be here to see him grow up? The fear gremlin started to shout again. 

 

By the summer of 2021, my chemo was over, operation completed and radiotherapy also done. I could get on with the rest of my life, phew. BUT fear had other ideas, this is when it took hold like a huge black could hanging over me and glued onto my shoulders. Everywhere I turned there was fear in my mind, will it come back, has it really gone? It was weighing me down and keeping me stuck. 

 

Gradually, as my physical body healed I started to come to terms with what happened, and the fear eased off a bit. It was still there like a huge black cloud but it had lifted up a bit and sometimes sat behind me out of sight. Out of sight until a check up, or something in the news about breast cancer, or breast cancer awareness month. This is here every Autumn to remind me of the date I was diagnosed. 

 

 As time goes on the cloud of fear is lighter however it is still there trailing around behind me, an unseen presence that pops up uninvited at all sorts of times and interrupts my day. Any time when I look forward too far into the future, up comes the fear seeking to hold me back and stuck.

 

Corrine Thomas - diagnosed October 2020 - triple negative BC

Marilyn's story

 

Dear me

Yes me I want to explain to me what I wish I had known when I started this journey 10 years ago I found a lump, positive me, said it will be a cyst, mammogram and ultrasound later no, it’s cancer , but they say it’s good as it’s been caught early so just lumpectomy and lymph node check and hormone therapy. Operation over me thinking I can cope taking a little pill for 5 years. All change as quickly as that, 3 lymph nodes were positive, so now 6 rounds of chemotherapy, 35 radiotherapy sessions, and 10 years of a little pill for hormone therapy What they don’t tell you, is now every little niggle you feel in your body you fear your cancer has spread to somewhere else. Every blood test, are the markers going to be in range, every mammogram (which are now so much more painful on the lumpectomy side) and ultrasound you fear they are going to show something. I feared that I would never see any grandchildren, or my children find partners and get married. Yes I live my life positively most of the time, but the fear that it’s going to come back never goes away. It constantly niggles in back of your mind, I never really tell anyone how I really feel, it’s the usual response I’m fine, as they don’t really understand anyway. As people, cancer muggles think that once chemo and radio are finished you will be back to your normal self. Now I’ve just stopped taking this little white pill after 10 years, I nearly stopped so many times because of the side effects, what really annoyed me was people said it’s only a pill, not knowing how much it affects your joints, your memory, your ability to have a good nights sleep, and not forgetting the forced chemical menopause, hot flushes that were debilitating, luckily for me I had one while the oncologist was giving me and examination, and then she had so much more sympathy because she could feel the heat, sea the redness of my skin, and see me physically dripping with sweat. Now my fear is I’ve stopped taking that little white pill, and I now feel my safety net has been taken away from, while I’m walking this tightrope of my new life that cancer has given me. When I am stressed I turn to the ladies in BRiC, they are so supportive, caring and understanding, I don’t feel alone, there is always someone who has had the same feeling. Like I said I do live positively, the 4 grandchildren I have at the moment keep me grounded, keep pushing me to live my life, they need their nanny, to give them time and love, and to build memories they can cherish forever. But just that niggling fear is just constantly there. I would just have like to have known this all before I started, it wouldn’t have stopped me having the treatment but would have stopped me feeling like I was going crazy, over reacting, and sometimes in a very dark and lonely place. Finding BRiC really helped me Marilyn.

Alison's story

 

Being diagnosed with incurable breast cancer at the age of 47 is without a doubt the most terrifying thing that has ever happened to me. It came completely out of the blue, I wasn't overweight, I exercised regularly and ate well, and I had NO primary diagnosis. 

 

    It was just me and my daughter and she had just had her 16^th birthday. She naturally was my first thought....so many milestones looming for her and I couldn't believe that there was a chance that I wouldn't be here to help her through them. When I told her, her words were 'you won't be at my wedding'...

 

    I was beyond distraught. I'm ashamed to say that it's the only time in my life that I've come close to considering ending my life. The pain of the grief and the frustration that I could not get away from it was crippling for me. I'd scream in the shower.

 

    Life became very surreal as I embarked on my chemo 'journey'. I'd watch commuters passing my house and was envious that I wasn't one of them any more despite hating my regular journey to work through heavy traffic. I felt removed from the world as mine seemed to become smaller and smaller. I didn't want to go out and I didn't want people coming to see me. I just wanted to curl up in a corner and die.

 

    When my hair fell out my daughter simply couldn't look at me. Her attendance at school was suffering, she'd be up until the early hours of the morning and sleep late, missing the start of school. A teacher at the school took her under his wing, allowing her to be upset in a private space if it was needed. I'm eternally grateful to him. It wasn't until recently (6 years since my diagnosis) that my daughter told me that she couldn't bear going to bed at night because she dreaded waking up in the morning to the reality of what was happening with me.

 

    I'm 8 years on now and feel that my thoughts about my diagnosis have softened considerably. There will be days when I don't think about it at all. My life is good and I'm fortunate that I have no side effects from my treatment and that this treatment is still working for me 8 years on. Dreaming of a future again feels like it could be within reach but I'm still nervous planning anything more than a year in advance. I don't know how I'll feel when progression happens, I've had it good for so long and it's a thought that progression may never happen....but I must expect that it will. That's the nature of it after all.

 

    In the meantime, my daughter and I are stronger, we appreciate the here and now and she's my main supporter through all of this. We've found our path together and it feels like it will be ok even if it isn't.