Amy Dixon shares her breast cancer diary - the arduous journey, the little things that helped & she tells us what not to say...

BRAVEHEART: Amy Dixon on her worst fear of history repeating to finding the lump and her positive stride …

Amy takes us on her breast cancer journey - from the sudden diagnosis in the first Covid lockdown to her new normal, 18 months later. Her unflinching resilience and determination to stay positive for herself and her family are nothing short of incredible.  She outright refused to be a victim or to be defined by her illness and despite a dedicated husband, family and network of close friends, due to the timing of Covid, she navigated much of the treatment alone. Being Amy, she kept going - walking every day, finding new therapies (hint: tap tap tap) and there was quite a lot of laughter through the tears. 

Amy also shares some very useful advice on supporting loved ones treading the cancer course - she tells us what to say, what not to say (and beware of the head tilt!) and so much more, as sadly her story is close to us all.

When someone asked me how I found the lump, I answered ‘I was looking for it’.

My mother was diagnosed with breast cancer when she was in her thirties, the same as me and devastatingly, she died at the age of 41 when I was just 11 and my brother Jimmy was 13. Back then they didn’t have the knowledge or the treatment that they do these days, however as any doctor will attest - early detection is key.

I remember sitting in a tiny room I had been ushered into on a Wednesday afternoon - 1st July 2020 - and as my doctor, Miss Roy said those words I had what can only be described as an out-of-body experience - fear gripped my body in some sort of whooshing sensation (you know the one where you think you might wee in your pants!). 

"When I heard the words - ‘I’m sorry your biopsy results have come back
and we have detected cancer’, my worst fear had officially come true.
These were the words I had been dreading for most of my adult life." 
 
 

July 2020 - the diagnosis

I want to mention how incredibly lucky I was in many ways.  I’m fully aware not everyone has the options I did at this point. Due to Covid there were huge delays within the NHS and so I was very fortunate to be able to go private and still have the same doctor - Miss Roy who diagnosed me initially - who I connected with and wholeheartedly trusted. We were able to move very quickly which was vital at this stage. However, what ensued over the following week or so was nothing short of brutal. 

Amy and her doctor, Miss Roy, smiling together through the uncertainty.

The tests and biopsies I had to endure to determine the best course of action were scarring. I think I would prefer to give birth without any pain relief over having what they call a ‘core needle biopsy’ which involves using a hollow needle (I say needle but it was actually more like one of those metal straws you get given in fancy restaurants). They drill it repeatedly into your boob in order to obtain breast tissue and get more detailed information.  Oh, and I forgot to mention on top of this whilst they are drilling it in your boob it is clamped into a mammogram machine. The pain after the anaesthetic wore off was indescribable. 

The MRI machine wasn’t much better - face down, terrified, in a loud bleeping claustrophobic tunnel for 45 minutes not being able to move was not much fun. At this early stage, you are completely clueless about all the breast cancer lingo.  The information you are given could quite frankly be in another language. Well, it was to be fair,  as it was nigh on impossible to hear what was being said underneath a covid mask! I spent the following days blindly googling words linked to my diagnosis which I had picked up and nearly sent myself to an early grave by giving myself a heart attack over incorrect facts I had found on the internet. So from then on, I decided to leave all my faith in Miss Roy’s capable hands.

My full diagnosis was HER2 +, ER+, PR+ … triple positive in other words. I was definitely going to be having surgery, chemotherapy, and immunotherapy for a year and then for the following 5-10 years, hormone therapy which induces early menopause by shutting down your ovaries so your body no longer produces oestrogen which feeds cancer. Hello, hot flushes and achy joints!

The wonderful treatment team

July 2020 - straight into surgery 

My first surgery was booked for 23rd July;  if my doctor got clear margins in the surgery, my second operation was going to be relatively straightforward. However, this was not to be the case and instead they found a second cancerous lump and extensive DCIS (which means a helluva lot of pre-cancerous cells). This meant I had to go back in three weeks later for a mastectomy and reconstruction to get clear margins and rid of all the cancer.  Again, I was one of the lucky ones and Miss Roy was able to re-construct at the same time.   Recovery time was arduous and painful.  I was attached to a drain with a pump to syphon off fluid and prevent any infection.  I was militant about doing my physio exercises which ensured I got full mobility back in my arm and shoulder and prevented something called ‘cording’.
 
August 2020 - the breathless reality 

As soon as I had recovered from my double whammy of operations, I headed off to Genesis Care in Oxford to start chemotherapy and immunotherapy. I remember going for my ‘pre-chemo checks’ - sounds like the in-flight checks you get on Wizz Air doesn’t it?  a bit scary, not sure the pilot is going to get you home safely and it all suddenly became pretty real.  I think with the surgeries my focus was purely on getting the actual cancer out.  I couldn’t really think ahead to what the next year might entail. 

"I remember a huge lump in my throat and the inability to breathe. 
I left feeling at a loss and hugely apprehensive about what was to come
and undeniably, very alone in this ‘journey’."

My local friends and husband were unbelievably amazing - rallying around, picking me up from chemo weekly, helping with the school runs, and dropping off food so I didn't have to think about what to eat as my taste buds had gone completely awry.  

Chemo didn’t affect me in the way you see in the movies when your head is permanently down the loo. It was the little things that would creep in, every week something different but it was the fatigue I remember the most. The bone-aching tiredness when you wondered whether your legs would get you to the top of the stairs. When I did arrive up there I would just have a little lie down on the landing. (But then maybe that was due to the nice bout of Covid I caught halfway through - who knows!). 

During the months of chemo

When the kids were in the bath I would lie on the floor and let their chatter just wash over me whilst I snoozed, it became quite a comfort.  By the end of it all I would start conversations and then just gave up, actually couldn’t muster the energy to finish them.  My family found that quite maddening as you can imagine.  Anyway, we muddled through. Actually, we didn't muddle through - we kicked the cancer's ass!

September 2020 - the cold cap

I added another layer of pain, quite literally, with my decision to do the ‘cold cap’.  This is where you wear an ice-cold, rugby-stye cap on your head for the duration of the chemo session. You put it on half an hour before and then keep it on for an hour after. It was grim and hideous: I would have a heated back pad, hot water bottles, and five jumpers and would turn the lights out in my pod, lie back and not move for four hours to try and block out the pain of a permanent ice cream head. I would make sure I didn’t drink any water before so that I didn’t have to go to the loo. By the end of the 12 weeks I had got the whole thing down to a T, but I’m thankful I grinned and bared it as it meant I could disguise my hair loss and made me feel a bit more like myself. Even if I did look like a cross between Friar Tuck and Bill Bailey. 

The brutal cold cap treatment

My six-year-old daughter Maggie found the fact I had a hole in my head very amusing. On that note, I kept my diagnosis very straightforward for our children (they were six & eight). I told them I had something bad growing in my boob, doctors were taking it out and the medicine that followed was to make sure as hell it was never coming back.  My children have been simply remarkable and resilient. Perhaps it was due to their age where they were old enough to understand I was ill but young enough not to be scared by it.  But also my husband Toby and I were determined to keep it business as usual so they knew they still had boundaries and in a time of uncertainty that really worked for us. 

"I didn’t use the word cancer as felt very strongly I wanted
 to change the stigma attached to breast cancer.
Prior to my diagnosis cancer to me meant death because that's what happened to my mother and that had obviously scarred me. But I was going to change that story for myself and my family and I was going to beat this."
Amy and her children

January 2021 - from the valley to the peak

Chemo came and went and as it went the third and darkest lockdown for all of us came in January 2021. Schools closed again and I was left completely broken with two children who needed to be home-schooled. I would say this period along with the actual diagnosis time was the hardest part of the journey. I called it the post-chemo comedown! Thankfully my oncologist clocked this and the children were able to go back to school whilst I tried to rebuild my strength and get back on track. The fog started clearing slowly but surely.

"It was like the circus had left town
and you are standing there helpless, picking up the rubbish."

I walked without fail every day. I have a lurcher called Nev, we called him my spirit animal, he didn't leave my side. I also started riding again and that, along with walking became my solace.  I was quite a ‘Gwyneth and green juice’ devotee pre-diagnosis so I just tightened up a bit on that element.  I wholeheartedly believe that staying active helped with my recovery and I am lucky enough to live in a place where I was able to do active things which I love and that in itself makes you feel grateful despite the horrors of treatment.  

And I saw my friends. Although a couple of my girlfriends refused to walk with me on Fridays.  I used to call them ‘Steroid Fridays’, they were the day after my chemo when my steroids were at their peak and I basically was like Ross from friends when he eats too much maple candy. I took them off on ferocious five-mile marches!

I decided to not look for side effects but to deal with them as and when they arose. I wanted to keep normality for the sake of the children and we did. Daily life still beckoned.  Sometimes daily life was a little bit more intense with the added problem of Covid!

October 2021 - the road to recovery

My immunotherapy came to an end - finally active treatment was over and my scans indicated ‘no evidence of disease’ or as they say in the biz - 'NED'!

When my final immunotherapy treatment ended, which was 17 months after the initial diagnosis, I have to be honest it felt like a bit of an anti-climax.  I think it's important to point out here that actual treatment wasn’t tough in itself, in fact, it was a walk in the park compared to chemo, sometimes I even forgot I had my nurse arriving on that Thursday! It’s more the fact you are gearing up to the end and then it happens and again like chemo you feel very on your own. Not so much on the doctor's radar which is good in the sense, you're not on their red list but in your mind (probably a little irrationally) you feel you should be checked in on regularly as if you are a VIP! But of course, that's not what happens and quite rightly so there are many many people going through this journey sadly and a great deal with not such a rosy outlook.  

"This is where the mental battle began. The physical one was over.
The mental one was equally as tough and this is where the positivity mindset had to shine through - I will not lie it was incredibly tough."
 

I don't quite know what happened or why - perhaps it was exhaustion or the fact that my body had been running on adrenaline and empty for 18 months but I plunged mentally and physically at this point.  Not for long but enough to make me realise afterwards how much I owed my body for carrying me through.  And I think after that intense period I really gained a new perspective on life and am glad in some ways that happened to me in order for me to realise what is a priority. 

September 2022 - the new normal 

The end of treatment is now a year ago and as I have navigated my new normal there have been highs and lows - whoever said it was a rollercoaster was bang on.  Overall, normality is creeping back in whereby every waking moment is not completely consumed with whether the cancer will come back… now it's just hourly! I know this aspect of it will get easier but in some ways, this mental side of the whole cancer thing is the hardest.  

My advice 

Get to know your boobs. Quite literally, that’s how I found my cancer. You can then detect anything that doesn’t feel quite right and go and get it seen immediately. I can't stress the importance of this.  My doctor said the outcome could have been very different for me if I had left it even a month later.

The amazing Coppafeel charity really does save lives. It saved mine. I found my lump very early due to being incredibly vigilant. Early breast cancer can be cured these days if caught in time and this is what Coppafeel is all about. 

The silver lining of wisdom

In the early days - about a week after I was diagnosed and when my head was a whirring mess, I received an email from a wonderful person who had been through the same thing four years earlier also with young children and quite a similar experience. She wrote the following words to me which I will never forget…

‘Believe me when I say this is the best worst thing
that will ever happen to you. 
It is a brutal journey but there will be a happy ending.‘

 
How true she was. 

Amy with her husband Toby and children, George and Maggie
---

Amy shares her answers to our burning questions below about how to navigate the cancer journey with our loved ones. We want to know - what to say, what not to say, how to help, when to keep knocking on the door, when to give space, and whether is it ok to laugh and cry...

I think it's important to say here that with a cancer diagnosis obviously what people say and do is with all the right intentions however when you are going through it sometimes you can feel frustrated, let down, annoyed, and angry at some people's comments and reactions. Everyone is trying to navigate the situation as best they can - whether you are the person with the diagnosis, a family friend, a best friend and so on. I hope the following helps:

What not to say … 

There are a couple of things to try not to say or do — things that I found particularly irksome:

1. The head tilt. Just don’t do it. You might not realise you are doing it but just don't. It’s maddening. It comes across as if the head tilter thinks this is your last outing before you die.

2. “I know how it feels my great aunt had it when she was 85”  I really feel for your great aunt who also had to go through it but her challenges are slightly different to one of a 40-year woman with two small children and very much pre-menopausal and with a damn good head of hair and boobs that are still acceptable to put in a skimpy bikini.

3. “That’s the good type of cancer! Or the best cancer to have.”

4. “You’ll be fine!”

5. Always acknowledge any diagnosis when you’re speaking to someone with cancer. It’s a very strange feeling when you are speaking to someone you know and they are skirting around the issue when they know. It can be as simple as, ‘I’m so sorry to hear what a shitty time you’re having’ and then move on. But acknowledgement really meant the world to me, makes you feel just a little less lonely and that people are rooting for you. 

If the person doesn't want to talk about it they’ll say thank you and move on but it might be they really do want to chat about it. Ask questions if you want to. Again if it's not appropriate then they’ll change the subject. But it's really nice to be asked how you are doing. 

What to say and ask… 

If you would like to ask questions and find out more these are safe ones to ask:

1. How are you getting on?

2. Have you finished your treatment? Where are you at in your treatment?

3. Are you feeling ok?

4. I'm here if you need…

And then just some good old  - 'WOW, good for you', 'you’re amazing' etc. I always rather enjoyed the 'so and so has told me how incredible you are being’ and ‘I’m getting my updates from so and so’. Works every time and shows you care. We’re all human at the end of the day!

How kindness counts

I am still bowled over to this day by how thoughtful people were. People I had only met a handful of times went out of their way to send a message or card/gifts.   I had amazing WhatsApp groups where they sent me incredibly encouraging messages. And pressies …. Goodness those pressies… people were unbelievable and believe you me that really, really helps! 

One friend kindly arranged for a ‘little coffee kitty’ for me. When we all lived in London (I now live in Oxfordshire) she arranged for a handful of girls to put what we would have spent on coffee seeing each other into a kitty and then at the end of my treatment she sent me that money to spend on something for myself. Just amazing. 

Another friend who had literally been through the exact same treatment six months prior arranged it so that whenever I got home from chemo on a Thursday there would be a card and then a little pressie…. It actually made me look forward to chemo sometimes!

The importance of a positive mindset

I decided at the outset to remain as positive as I could be. I think it helps I’m wired that way but I had a very strong word with myself about how I can't make this more difficult than it already is. By that I mean I wasn’t going to waste any energy on being angry or fighting it. I had to accept what was happening and take each day as it came. I'm not saying there weren’t days where I hated everyone and everything and had my moments but I was able to get myself out of those holes and carry on and focus on the positives.  

Other therapies that helped

I started seeing an acupuncturist weekly who was wise and brilliant and not only was he brilliant at acupuncture he also was hugely knowledgeable on cancer so I was able to look to him for reassurance or any questions that cropped up between my doctors appointments. Poor guy- I was like a repetitive parrot - asking him “Are you sure I’m going to be ok?!” He would clutch my hand and look me in the eye and say YES! That’s what I needed to hear weekly! He was wonderful to me. 

I went to see a healer, again I can’t describe in words how she helped me so much but she made me see my diagnosis in a way that I could accept it.  This is quite far out there (pretty sure my brother and husband rolled their eyes when I told them my theory) but it worked for me! I looked at it that my tumours were my bubbles of grief. My mother died of breast cancer, as I mentioned earlier, and also my father had died the year before nearly to the day I got diagnosed. So we worked through that together and it really helped me. She also introduced me to EFT. It’s called the Emotional Freedom Technique. I'm evangelical about it, I’ll preach to anyone that will listen to me about it. It works for everyone and everything.  In a nutshell, it shifts trauma/grief etc out of the body by tapping into your parasympathetic nervous system. I will let Nick Ortner explain it a bit better: The Tapping Solution by Nick Ortner.

So now whenever I feel a fear rising within me about recurrence or anything for that matter I just TAP, TAP, TAP! 

Support within the cancer community 

It’s been really helpful to connect with other women in my situation, those who’ve trodden the path before me and have been kind enough to pass on invaluable words and advice.  I have a group of three friends, all on the same hormone treatment and we have a WhatsApp group where we can rant about our situation which unless you’re in it it's difficult to explain to anyone else. It’s so helpful and we all really support each other and try and meet up when we can. And I know we will be friends for life.

I had tools and I am very lucky I had access to people to help me. There are amazing charities which can help support and guide you if you are a little lost and don't know where to start. It was a bit trickier for me to access these due to Covid but I have friends who have found them really helpful - Maggie’s and Future Dreams.  

Playing the cancer card 

Cancer did have its upsides…I used the cancer card for queue jumping, when I didn't want to use my Covid mask, and when late for anything which is quite a regular occurrence. I'm not going to lie I used it wherever I could. In fact, I still do…. Although annoyingly my husband and friends have wised up to this now.

The little things

You would think my appetite for shopping would have been parked at this time. Oh no! Loungewear took on a whole new meaning! I took the ‘being kind to yourself ‘to a whole new level.

One day I was laughing with my oncologist about how my spending had gotten a bit out of control and how the steroids had taken effect in more ways than he intended.  One day I came back with a brand new car. I called it the chemo car! I told my husband that I needed it as I needed to be comfortable with heated seats to and from chemo every week. Apparently overspending ‘willy nilly’ is actually a thing and a proper steroid side effect. Needless to say, he reduced my steroid dose!

I then obviously had to get quite a lot of ‘chemo cashmere’ and then anything else with a C in it that I could whack chemo or cancer in!

I brought a new handbag for chemo, obviously.  

 --- 

Amy Dixon loves living in Cotswolds countryside - doing a bit of property consulting for DS Churchill and indulging in her penchant for any bargain by buying and selling on EBay. She loves bracing long walks, horseback adventures and family life with her husband Toby and two children.

Amy’s husband Toby runs the London Marathon in support of Coppafeel - you can still support this incredible charity by clicking the link to his fundraising page here. 

 
A favourite poem of Amy's during her journey