What I Know About Breast Cancer
And why I will never, ever stop talking, sharing and ranting about it. Not ever. Nope.
An additional free post this week for ALL of my lovely subscribers, specifically due to the subject matter, in the hope that it might be useful. Thanks to all of you who read and subscribe.
Recently, the charity Cancer Support UK asked me to become an Ambassador. I didn’t have to think about it, not even for a minute. Back on a sunny May day in 2012, I was diagnosed with breast cancer. It wasn’t, in the words of Gary Barlow, my Greatest Day. I had small children and a busy life; there was no room for it, tbh. There are no proper words to describe the feeling when you are told that you have cancer. You cannot prepare yourself for it, you cannot predict how you will react or, even, how others will react. Since I have been working on social media, I have taken every opportunity to talk openly about my own experience and I have received hundreds and hundreds of messages during this time from people who have been diagnosed who felt as scared and confused as I did.
So why was it such an easy decision to become an Ambassador for Cancer Support UK? They’re a charity that focus on supporting those through diagnosis and beyond, helping people come to terms with the impact of the news. They also provide Cancer Coach support groups (you can even become a Cancer Coach volunteer and run a group yourself). I have never turned down any opportunity to talk about my own experience as I know that when I was diagnosed, chatting to people who had been through similar gave me hope that my life would return to normal.
So, in the fervent hope that by talking about it might help others, here is my story. 12 years ago, I was 41 and noticed that my left breast was harder than the right. During and after my three pregnancies, my body shape had changed back and forth dramatically and my chest had suffered the consequences from a firmness point of view – my breasts could best be described as empty paper bags (yes, not the greatest of images, sorry, ha). The hardness got worse when my period came and it was really painful. When showering one day, I found a tiny circular lump the size of a pea. It was smooth and circular and felt like a cyst so I was pretty unconcerned but my husband Joe convinced me to go to the doctor to have it checked out.
She agreed that it was most likely a cyst and that it was probably nothing to be concerned about, but because I had breast cancer history on both sides of my family through an Aunt and a Grandmother, she decided to send me for a mammogram, just to cover it off. But I was ridiculously worried – my Dad had passed away at 61 only four years previous, just four months after he was diagnosed with lung and bone cancer, after being a seemingly fit and healthy man.
The moment that they did the first scan, I knew that there was something wrong. I was sent out and then called back in seven times so that they could get different angles, before being sent to a different department for a biopsy. Mammograms are not fun at the best of times, but this was utter hell. Joe had come with me for the appointment but we were there all day; my youngest child Leo was only three and had to be collected from nursery so I was alone for the last few hours, by which time I just KNEW what it was. And I was right. Within a week I was sitting in a hospital office receiving confirmation from the consultant that I had breast cancer. Fun fact: they pretty much told me immediately on the day because, although the lump had felt round and smooth, it was jagged when scanned which is a sign that it’s not - as the nurse doing the biopsy explained to me - healthy.
My first feeling was that I was furious. As I explained hysterically to the poor man sitting in front of me, I had three children, the youngest of whom was barely a toddler. I couldn't die, I was only 41. I wanted to see them grow up, I wanted to see them get married, I wanted to see them have their own children. It was simply unacceptable. I was escorted out of the office by a lovely nurse who took me into the corridor where I said ‘FUCK FUCK FUCK’ loudly for about ten minutes whilst the waiting room looked on bemused. It's funny that when a truly stressful event occurs, the only thing for me to do that REALLY helped was to shout. Joe and I went home where I discarded my mother in law's offer of a cup of tea in favour of several bottles of wine (Vina Sol, in fact, my favourite).
The next month was a blur of activity. When we found out that the cancer was in my sentinel lymph node (which meant that it could well have gone elsewhere), we took the children out of school and whisked them off to Egypt for a holiday, although we wouldn't know to what extent my lymph was affected until after I'd had the operation. This was the best of distractions and enabled us as a family to come to terms with what was happening. I moved immediately into coping mode – in order to maintain my mental health, I needed to be positive and think positively. I couldn’t allow myself to sink into worry as I had a family to care for and I wanted to keep them positive too. I was working from home at the time transcribing books and interviews and was lucky that I was able to occupy myself without having to explain to work colleagues what was going on. This is often a worry for diagnosed patients - it can be hard work coping with other people’s reactions. The last thing someone that has just been told they’ve got six months of chemo ahead needs is people crying at them, quite frankly.
In July I had a skin saving mastectomy (the surgeon removes the breast tissue but keeps as much as the skin around it intact so that reconstruction is simpler), a revelation in that it had the bonus effect of making my breast look significantly better than it had previously. I was at the Olympic Opening Ceremony precisely a week after my operation, even though I spent the morning being drained at the hospital and had to be ferried around the village in a golf cart. Nothing was going to stop me taking full advantage of BMW corporate hospitality and a five star goodie bag. Ella, who was then 11, stoically ran Race For Life without me (we'd booked on before I was diagnosed to do it together in memory of my Dad) and I think that's one of the few times I cried throughout the entire sorry episode.
My six sessions of chemotherapy started in the September. We told the children – at that time 11, 9 and 3 – what was happening, that I was going to have to have chemotherapy that would make me sick and that would cause my hair to fall out but that having this treatment would kill the cancer so that I would be well again. Because we explained it all and didn’t keep anything from them, the children were surprisingly accepting of the situation – I think that if we had not given them the low down, it might have been a different story. I pre-empted the hair loss and had my long hair cut short, but when it started falling, I couldn’t bear to wait for it all to come out so I sat on a chair in the living room and Joe and the children cut it and shaved it off for me. I wanted to be in control of my body so that it wasn’t controlling me.
Anyone who has ever had chemotherapy will back me up when I say it ranks high score wise in the most revolting activities that you can undertake. Because the treatment is cumulative, I felt worse and worse each time. The first time I was pretty much skipping off to my appointment shouting ‘bring it on!’; by the final sixth session, I was having preemptive sickness before I even left the house. For five years, I couldn’t even drive past the Royal Berkshire Hospital without wanting to throw up. The side effects were pretty nasty – I felt as though I had dirt running through my veins and was thrown immediately into early menopause including the most horrific hot flushes and severe tiredness. I tried to manage these effects by keeping cool and wearing soft fabrics, nothing harsh on my skin that would make me feel uncomfortable. I had a PIC line as my veins were weak and so my favourite luxury was to lie in a warm bath (holding my PIC arm in the air, ha) which always made me feel better. Very unhelpfully, my body reacted allergically to steroids and Ondansetron (the anti sickness drug) so it was a bit of a slog but I knew that the end was always in sight.
The NHS chemo ward was a barren landscape of green plastic chairs arranged against the wall. I always went alone which I found easier, despite friends and family wanting to come with me for company. Again, it made me feel that I was in control of what was happening to me and kept me in a positive mindset. I would take the iPad and play Scrabble by myself every three weeks which was actually very therapeutic, whacking in as many good words and high scores as possible before I was unhooked and set free again. The staff, however, were amazing - there is more care and love that comes from the wonderful people who work on a chemo ward than anywhere else that I’ve ever been.
There were some positives. I didn't have to shave my legs (or anything else, for that matter) for six months. I convinced Joe that if I was going to be bald, I needed an 'investment' scarf so he bought me Alexander McQueen cashmere. Plus, I got to change my hair colour every day with an abundance of £30 Amazon bought wigs in every feasible colour. And best of all, I got through it and survived. Oh, and another bonus - with reconstruction and uplifts I went from a 32A to a 32C. No support required, ha.
Last month, it was 12 years since my diagnosis and I would, of course, be telling some heavy untruths if I said that the experience finished the minute they whipped out the PIC line. I still get anxious. I worry about every twinge, every ache, every swelling, every cough, every dodgy mole, every armpit pain that could signify that my cancer might have flown the breast nest and gone out to find new parts of my body. Every time I feel unwell, I read far more into the symptoms than I would have done pre my cancer experience. What happened to me has made me much more aware of my body and any changes that occur and I’m far quicker to have them checked out for certainty than I would have done prior. It’s easy to think that once the treatment finishes it’s all over, but this couldn’t be further from the truth. The mental and physical health effects of a cancer patients experience last much longer and it takes many years to return to ‘normal’ after such a stressful and anxious period of life.
I also talk about my experience a lot. The years pass, but still – like any traumatic life occurrence – it feels like yesterday. I meet other people who have gone through the same or similar and we are immediately bound together with our shared experience; talking about it together validates it and reminds me how lucky I am to be here with my family. I share a lot on my social media channels, encouraging others to check themselves (often to the point of what I imagine would be quite annoying but still I persevere) and without fail, each time I do so, I receive messages from followers saying that they have checked and found something that they then go and get checked out. It is SO important to talk about these things with others; with one in two of us being diagnosed in our lifetime we cannot afford to just sit back and be complacent.
Randomly, my cancer experience has had a hugely positive impact on my life. I know that not everyone gets to keep going. But I do, and I am happy every single day that I am still here and I make every single moment of it count. It’s also made me realise that I have no boundaries and the freedom that comes with that revelation has helped me achieve far more than I ever hoped in the years since. And the best bit? My daughter, Ella is now 22 and studying to be a Physicians Associate in the NHS, spurred on, I think, after seeing the care that I experienced when she was small. I’m still here and strong and I will NEVER, ever stop being grateful for that.
A version of this post was published for Cancer Support UK. If you are looking for support after diagnosis, have family or friends who have been diagnosed and need support or you want to find out how you can learn more about this amazing charity, you can TAP HERE. You can also get in contact with them if you are a business looking for a charity to support! Thanks so much for reading.
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Though I have read your story before, I will always make time to revisit it💗 You’ve always been a dedicated ambassador of awareness, so to be recognised as an official Ambassador for Cancer Support is AMAZING. I am one of those very followers that you inspired to get checked (& keep checking!) after finding a lump. Thankfully I only had to have a benign Complex Fibroadenoma removed but that scar & your story endure. Above all, your life-affirming outlook & honesty continue to be awe inspiring. JOIE DE VIVRE indeed💚!
Made me cry Lisa xx you’re amazing and beautifully written xx