Tits Up

By Carole Paterson

It only takes seconds for your life to change.

It’s said that everybody knows someone who is battling, or has battled, cancer. In a breathtakingly personal account, Tits Up is the story of how Carole Paterson underwent breast cancer treatment from start to finish. Carole was diagnosed with Triple Negative Breast Cancer, which affects just 15% of patients. To keep her mind focused during treatment, she documented her journey day by day, to create an easy to read commentary on life as a cancer patient. Focusing more on the personal side, the book is written with the sole purpose of reaching other cancer patients with the message: you are not alone.

Taking the reader by the hand, Carole leads us through every stage of her treatment: chemotherapy, surgery, radiotherapy, and immunotherapy, including a daily diary during chemotherapy to share thoughts and worries as she progressed. While it doesn't make light of the diagnosis, the book attempts to find light in the darkness where it can by sharing some of the humorous moments Carole experienced, as well as wedding preparations, shielding through the pandemic, and her focus on the future. In the firm belief that knowledge is power, Carole hopes to give the newly diagnosed a wealth of information that could help to make their journey a little easier to navigate. 

Companion, friend, advisor, shoulder, it's all of these and more. Intended to be a book that reaches into a nightmare and helps guide the way through, Tits Up is one that we hope we will never need, until we do. Brutally honest, and written with a blend of sensitivity and candour, Tits Up represents strength of spirit for both the author and the audience she is trying to reach.

• Language: English
• Publisher: Troubador Publishing Ltd
• Release date: Apr 28, 2022
• ISBN: 9781803139470

Carole Paterson

Carole Paterson worked as a Communications Consultant in creative and clinical industries until her career was put on hold when she was diagnosed with Triple Negative Breast Cancer, which affects just 15% of patients. After two years of treatment, she now wants to use her experience to raise awareness of breast cancer, in particular TNBC, and to increase understanding of what it’s like to live with a cancer diagnosis.

Book preview

Contents

Introduction

One

Two

Three

Four

Five

Six

Seven

Eight

Nine

Ten

Eleven

Twelve

Thirteen

Fourteen

Fifteen

Sixteen

Seventeen

Eighteen

Nineteen

Twenty

Twenty-One

Twenty-Two

Twenty-Three

Twenty-Four

Twenty-Five

Twenty-Six

Twenty-Seven

Twenty-Eight

Twenty-Nine

Thirty

Thirty-One

Thirty-Two

Thirty-Three

Thanks

Introduction

When I first received the diagnosis that I had breast cancer, I was devastated. Then when I started to read about Triple Negative Breast Cancer, which affects around 15% of breast cancer patients (including me), I was terrified! It was a very scary time. I really wanted to find out about what the next few months had in store, but I was frightened to search for the answers. I had to do it bit by bit. It was like having a scab; I knew it was going to hurt or upset me, but I couldn’t stop picking. The more I found out about TNBC the worse it got, so by the time I started my treatment I just thought my time was essentially up.

However, as my treatment started and I began to learn more from my care team and experience things first-hand, I realised that everything was far from negative. Obviously, I’d have much rather been cancer-free, but my cards were already dealt so I just had to play them as best I could. So, to keep my mind occupied and my thoughts positive, I decided to document my journey from day one so that other people in my position didn’t need to pick scabs… unless they wanted to.

Triple Negative Breast Cancer (TNBC) is an uncommon variant of the disease, which is harder to treat because of the limitations with standard breast cancer drugs. Triple negative cancer cells don’t have receptors for oestrogen or progesterone hormones or for the protein HER-2, so they don’t respond to many conventional breast cancer treatments. TNBC is also aggressive, has a high recurrence rate within the first five years, and lower survival statistics overall.

Being given that information at the start of my treatment was daunting, and after embellishing the facts with dubious snippets I’d gleaned from the internet, I was despondent to say the least. But documenting my voyage, day by day, gave me a focus. It was strangely therapeutic. Cancer treatment can take over your life, but being given an opportunity to take back that life from this terrible disease is amazing. I felt that my role in the treatment process was to stay healthy, both physically and mentally, and to remain positive. Writing helped me to do that, and I hope that anybody who reads this book feels a little bit more in control of the situation they’ve been thrown into, whether that be as a patient, a loved one, or a friend or colleague who wants to offer support. A cancer diagnosis doesn’t just affect the patient; the impact can radiate out to cover a very wide network.

As I began to get used to the weekly regime of chemotherapy, and the way it affected my body and brain, I became acutely aware of how lucky I was. Lucky to have a wonderful family who were there to help in whatever way they could; lucky to have a strong and loyal network of friends who offered support from day one; lucky that I wasn’t a sole breadwinner whose contribution to the household was vital; lucky that I was otherwise physically fit and mentally strong. Above all, lucky that I was being given the opportunity of having treatment. Not everybody gets the chance.

There is no doubt that cancer takes its toll on many aspects of life. The physical changes to the body and the effects on mental health are the big ones, but cancer can also have a massive effect on finances, employment, family dynamics, friendships and much more. My personal cancer journey brought up many of these issues, so wherever possible I’ve written about them. My views entirely; take them or leave them.

My cancer journey had an added dimension: if all went well, my partner and I were going to get married at the end of it! Planning a wedding can be stressful at the best of times but add cancer into the mix and it’s a totally different ball game.

Without doubt, 2019 was a horrific year for me and my family. What kept me going was the thought that ‘next year has got to be better’. However, just when I thought that nothing else could possibly go wrong, the whole world was thrown into devastating turmoil by COVID-19, the Coronavirus which eventually killed over 160,000 UK residents and over six million people across the globe (totals correct at time of writing).

Like cancer, the Coronavirus didn’t discriminate. Rich, poor, weak, strong, young, old – it took whomever it wanted. A tragedy by itself, the virus unfortunately created an undercurrent of medical issues that will no doubt surface in years to come. Through the restrictions of national lockdown and basic public fear, it became apparent to the medical world that many people were not getting vital cancer symptoms checked. Referrals to cancer units were down to a fraction of their previous levels, which will mean that many cancers have been left to progress to later stages which may be more difficult to treat.

Shockingly, again due to the pandemic, many cancer treatments were purposely put on hold as the risk of contracting Covid-19 through visiting hospital was deemed greater than leaving the cancer to develop. With thousands of people in the UK affected by this, and hundreds of thousands across the globe, the medical professions will have a mammoth task to clear the backlog and get patients back on their treatment track.

Everybody’s cancer pathway is different. There are numerous variants of cancer and a myriad ways to control or cure the disease. But generally, there are three main areas of treatment: chemotherapy, surgery and radiotherapy. Some people require just one, some two, or as in my case, all three. I’ve got friends who’ve won their personal battles with cancer and I’ve got wonderful memories of fabulous friends who sadly weren’t that lucky.

Cancer isn’t pleasant; the treatment is gruelling and invasive, and it takes over your life and the lives of your loved ones for many months. You may end up bald, you may put weight on through steroids and low activity levels or you may lose it through sickness, but ask yourself, ‘Does it really matter?’ Of course, it doesn’t. You just need to come out the other side and get on with whatever life has in store. Life is amazing, and after tackling an issue as big as cancer, you realise just how precious each day is.

So welcome to my cancer story; an unashamedly personal record of my journey through breast cancer treatment.

One

Today is Thursday 9th May 2019; a strange, surreal day. This morning I was diagnosed with aggressive Triple Negative Breast Cancer (stage 3, grade 2, invasive ductal carcinoma of right breast, ER negative, PR negative, HER-2 negative, to be exact). Sounds scary. This afternoon we booked our wedding!

Are we mad? I hope not! The date is set for six months from now: Friday 1st November. At this moment in time, I’ve no idea if it’s achievable, but it seems ages away, so we’re going to give it a go; it’s something to aim for. I have no real experience of cancer treatment. I just know that everybody is unique, and there are lots of treatment packages which affect people in different ways. And after all, six months is a long time!

We weren’t being flippant with the diagnosis or tempting fate when we booked the wedding. The appointment with the venue wedding planner had been booked for three weeks; well before I’d even been to the breast care unit to undergo initial checks. We’d decided to arrange a low-key wedding so that we could end the year on a high note. In January my dad had passed away, which was a big, horrible shock for the family, and we are all still grieving and trying to come to terms with not having him around.

I’d been to my GP towards the end of April, to get an initial check, and she had referred me to the breast care unit. At the time I was hopeful that the pain I was getting in my right breast would turn out to be a cyst or something hormonal. The thickened area of my breast had been with me for over twenty years. I’d had emergency mammograms, ultrasound scans and three-monthly check-ups in the past. Around fifteen years ago, I was so concerned that I paid privately for yet another mammogram and was treated so badly by the private hospital staff I thought I’d better just trust in the NHS in future… and I do – 100%!

The nurses at the private clinic all those years ago treated me as though I was a hypochondriac with more money than sense. They read through my notes, and commented that I’d already had plenty of checks, so why was I there? They charged me up front, before they’d do the mammogram, and they didn’t even have the courtesy to send me the ‘We’re pleased to confirm that everything is OK’ letter; I had to chase them for it. But eventually I was assured that everything was fine, so I put all that behind me and vowed to rely on the NHS for any future checks I might need.

Over the years, I just got used to my lump. It was a thick, spongey area that nobody could see, but I knew it was there. It wasn’t painful, unless I pressed it, and the medics just put it down to an inflamed milk duct. In the early years, a specialist linked it to me having breastfed my son, and I was advised to use high-strength Evening Primrose oil, which did help from the pain point of view. But as time went by (my son is almost twenty-seven!) that explanation wore a little thin, so it was then suggested that it could be a cyst that would eventually need draining. I was again assured that there was nothing to worry about.

So, every three years, I went for my routine NHS mammogram and a couple of weeks later I received the letter saying that everything was clear. But if I’m honest, I never 100% believed it. I’ve always felt that it would turn into breast cancer, and unfortunately it now has. But strangely, because of my twenty years of background worries, the firm diagnosis I have now is an enormous relief; it will finally be dealt with.

Something must have happened recently to change the cells in my breast. I’m not implying that anybody was negligent; far from it. My boobs have probably had far more than their fair share of attention from doctors and breast care professionals over the years!

More recently my lump had started to be painful all on its own without any prodding from me. Every so often I’d get a stabbing pain so severe I could almost vomit, or a wave of pain that made me grab my breast and hold it firmly until the agony passed. The best way I can describe it is to imagine stubbing your toe badly. There is a few seconds delay between knocking your toe and the horrendous sickening pain that follows. The breast pain was always over in a matter of seconds and then I’d think, Was that for real? I’d decided that maybe it was cyclical; something to do with the menopause. The pain seemed to get worse every few weeks so that seemed a logical explanation.

Then one fateful day we were driving back from London after visiting my partner George’s father who had come over from the West Indies for some medical checks. Usually George drives, but he’d been working so hard and driving back and forth to London over the past week with work, so he was exhausted. I offered to drive home and, very unusually for him, he took me up on the offer. George hates being a passenger, especially with me at the wheel! He thinks I drive too slowly and that seriously winds him up! What seriously winds me up is that I’ve had two speeding tickets and a stern ticking-off by a policeman and he’s never had one ticket, in all his forty-plus years behind the wheel!

So, I started to drive home, and everything was OK for about half an hour. The occasional breast stabs were bearable, so I just concentrated on the road. Then suddenly I got an excruciating pain right through my right breast. I felt like throwing up as I grabbed my breast with my right hand to try and stem the pain. The feeling was so severe I had to pull over onto the hard shoulder of the motorway or I would have lost control of the car.

George immediately got back into the driving seat and we set off again. He made me promise to call the surgery as soon as we got home. I couldn’t phone from the car, because it was all too noisy, and I wanted perfect clarity for something so worrying. Within minutes of getting home, I rang my doctor’s surgery and explained what had happened. The receptionist arranged an emergency appointment for me the following morning.

I saw a doctor I’d never seen before, which wasn’t unusual because I rarely go to the surgery. I hate taking any medication and can usually ride stuff out, but I knew deep down that I wasn’t going to be able to brush this off. The doctor was very understanding and concerned. I was able to explain my extensive breast history, which she checked on my on-screen notes, and then she said she’d like to examine my breast, if that was OK with me. This must be a new patient protocol because most of the healthcare professionals ask permission to examine me now. It’s nice to be treated with courtesy even though I am incredibly grateful every time I’m examined. As a patient you’re in a very vulnerable position, so being treated like a person instead of a medical number makes a massive difference.

I lay on the examination bench and braced myself. Usually breast checks don’t hurt; but I knew this one would. And it did. The pressure was excruciating and by the time she’d finished I had tears in my eyes. ‘There’s definitely a thickened area, and it’s probably a cyst, but I want to refer you to the specialist breast clinic, just to make sure. Are you OK with that?’ said the doctor. I certainly was, I knew something had changed.

So, the referral was made. I was told it would be fast-tracked, so I’d hear from the hospital within two weeks. More or less to the day, I got a letter inviting me to an appointment at the breast clinic at my local hospital. It was an evening appointment, 6.20pm, which was perfect for us, as George could come with me after work. We thought we’d eat dinner after we got home, as it would probably be a quick check-up.

However, it was anything but quick. When we arrived at the breast care unit, the waiting room was busy. There were women of all ages from mid-twenties to ladies well into their late seventies. Some were on their own, some were accompanied by partners, some were with friends. The atmosphere was lovely and friendly, and the decoration was themed and tasteful. Purple flowers were the subject of many paintings on the walls and toned beautifully with the chairs and furnishings. There was also a small area which displayed knitted scarves, pink notebooks, and second-hand books to raise money for the unit. I remember thinking that I’d buy some items on the way out. I was far too nervous to browse while I was waiting.

I was called through quickly and introduced to one of the nurses who was my breast care nurse for the evening. I’m not going to name any of the individuals who have looked after me throughout my journey because I wouldn’t want to put anyone on a pedestal. They should all be on a giant pedestal; the level of care is amazing! My nurse took me into an examination room and explained that the doctor would be through to see me soon. She asked me to remove my clothes from the waist up, then lie on the examination bench and cover myself with a thick white paper sheet she’d left on the side. She explained that the doctor had just gone in with somebody else so there was no rush; I could just take my time.

Around ten minutes later, the curtain was drawn back, and the nurse came back with the doctor, a youngish man with a lovely genuine smile. Actually when I think back, he probably wasn’t that young. When you’re in your mid-fifties everyone seems young! The doctor introduced himself, shook my hand, then asked me to explain what had brought me there today. He then checked through my notes. We laughed when I told him that I’d been getting some excruciating pains in my breast, however because I’d come to get it checked out, there was absolutely no pain at all today! ‘I believe you,’ he said, smiling, ‘but I’d like to check your breast now, just to make sure. Is that OK?’

I was hoping for a quick examination by the doctor then for him to say it was a harmless cyst. However, I was given a thorough check. The doctor examined my left breast first to familiarise himself with my normal breast tissue, then he compared it to the right one. After the manual check he said he thought it was possibly a cyst, because of the texture, but, ‘I think you should have a mammogram while you’re here.’ He then took a felt-tipped marker pen and drew a circle around the thickened area of my breast so that the radiographer would know where to concentrate effort.

I was asked to pop my top back on, and the nurse said she’d be back for me in a few minutes. I was then taken to another smaller waiting area within the clinic, which had two cushioned benches opposite each other and a big telly on the wall at one end. Coronation Street was just coming on, so I joked with another lady who was waiting, ‘At least we won’t be missing this.’ She laughed and said, ‘Do you think they’ll bring us a glass of wine each if we ask nicely?’ It was a great idea and would have definitely taken the edge off the situation.

After a short wait I was called through to a consulting room for my mammogram; an experience I’d suffered a few times before and wasn’t looking forward to repeating. But the radiographer put me totally at ease. I’ve had so many examinations over the years that baring my boobs is no longer an issue. The nurses who specialise in this field will I’m sure have seen every shape and size of breast imaginable.

The radiographer then apologised for the procedure she was about to put me through. ‘This machine could only have been designed by a man,’ she joked as she positioned my right breast (the sore one) onto the glass shelf of the machine, ready to be squashed horizontally like a hamburger in a press. She explained that it was going to hurt, but said it was necessary to compact the breast tissue like that to get the best images. She promised to be as quick as she could, and she was, so the ordeal was over in just a few moments. She repeated the process with my left breast, for tissue comparisons, but as there was no pain in that breast, the only discomfort was the compression.

Eventually the radiographer said, ‘That’s great, I’ve got some good pictures, but I think you should have an ultrasound scan, while you’re here.’ I was then asked to sit back in the waiting area until the ultrasound room was free. After just a few minutes’ waiting I was introduced to another radiographer who was going to undertake the ultrasound examination. She was very pleasant and polite, but I got the feeling that more of her energy went on performing her task than making small talk.

I was asked to lie back on the examination bench while ice-cold lubricating gel was smeared over my breast. I braced myself for what was to come! It was uncomfortable because the doctor had to press down firmly, but she was only doing her job. She was also very serious, rolling the probe over my breast while staring into the screen in front of her. I tried not to think too much of it. The breast care nurse was by my side the whole time, holding my hand and making the small talk. She told me about her University work, her holidays, asked me bits and bobs, kept telling me I was doing well. All I was doing was lying there; they were doing all the work!

After a while, the doctor finally took the pressure off the probe and said, ‘I’d just like to do a biopsy while you’re here, just in case. Are you OK with that?’ Of course, I said yes but, if I’m honest, at that point I had started to understand that things were more serious than I’d first thought. I knew I wasn’t going to get the ‘all clear’.

The procedure of obtaining the biopsy was uncomfortable but not painful. The doctor used a local anaesthetic to numb the area, so all I felt was the initial scratch plus a tiny sting as the needle did its job. Nothing major; just like the old joke… ‘All you’ll feel is a little prick then it’s all over… millions of women experience the same feeling every day!’ I remember that Agnes Fairchild line from the TV comedy series Brass, back in the 80s, and it always makes me laugh when a nurse says those words. Most of the nurses are too young to have even seen the programme, so they probably think I’m going doolally when I smile! It just tickles me – even after thirty years! I’m even smiling writing this!

To be honest, I’ve found that my sense of humour and my ability to find a lighter side of most things (inherited from my dad, who would often find something funny at the most inappropriate, cringingly embarrassing moments!) has helped me massively. Cancer isn’t funny at all, the treatment isn’t funny at all, but along the way there have been some lovely amusing moments that just take the edge off the seriousness of the cancer journey.

So, I got my little prick and after a couple of minutes, the area was numb. I just looked away; it was all getting pretty serious, and I could feel the tears welling up in my eyes. The doctor described what she was doing, step by step, but I was too nervous to take much in. She put a needle inside my breast then demonstrated with a separate machine to show me that there would be a ‘click’ very soon. The click is the tiny slice of breast material being harvested for analysis. When it came the click didn’t hurt at all, but even though I was waiting for it, it made me jump and made all three of us laugh, which lightened the mood for a few seconds.

The radiographer then said she would like to take another biopsy of my armpit, so that the cells could be compared. That was more uncomfortable as she was obviously aiming for a specific area that was deep inside my underarm area. She was extremely focussed on getting the biopsies, so she had no inclination for small talk, but the nurse was a chatty one and she did her best to keep my brain occupied on anything other than what was going on.

I’d realised that the situation was likely to be serious. I’d never had so much attention, and