The best and worst year of my life: My Big-C Journey.

In some respects, 2021 was an excellent year for me. I created and launched India & Rar, started formal training to become a stylist and most importantly of all, made the changes necessary to finally be at home and present as a mother with my three boys. Of course, my diagnosis in November overshadowed some of this, but 2021 had been exciting, energising, and full of hope and possibility until that point.

I wanted to talk to you about my health in 2021. It feels essential to share my experience and the challenges I faced leading up to my diagnosis.

I don’t want anyone experiencing similar symptoms to be overlooked and ignored as I was. Hindsight is a beautiful thing, but knowing your body and trusting your intuition could be the difference between catching the Big C early or not. It’s hard to look back now and see some of the things I could have done a little differently. I don’t know if the diagnosis may have been caught earlier, which would have meant it didn’t spread to my brain, but it's hard not to think like this. I need to turn these thoughts into the light and share my experience, I believe it could help prevent others from going through some of the pain my loved ones and I have felt.

The Beginning

I had my little Remy in October 2020. Around this time, I took voluntary redundancy from my career as a Business Development Manager for a well-known ethical children’s fashion brand. I loved this job and had worked hard at it and been successful for three years, but over time my targets rose, and it was harder and harder to meet the continued and ever-increasing demands. I look back now and realise that it was relentless, working full time through lockdown at home with an energetic toddler and homeschooling my seven-year-old. On top of that, my company was restructuring and set in place the process to change my role. I was nine months pregnant at the time and, being completely honest, didn’t have the headspace or the energy to return to a more significant role with even more pressure and expectations as a mum of two, let alone a mum of three.

Welcoming Baby Number Three

The first few months of Remy were a bit of a blur; we were in the process of having a renovation so that we could fit our ever-expanding family into our home. Then just seven days after Remy was born, our financial situation unexpectedly and dramatically changed, which meant we had to stop the build. I had a newborn in a half-finished building site. I remember crying for about a week, the baby blues had kicked in, but I was also most definitely in love with my new bundle of joy. Thank you, nature, for Oxytocin.

It was a pretty stressful time on top of a worldwide pandemic still being in full throttle. I had a newborn and an unfinished extension, but our home was full of love, and we embraced the solitude and our baby bubble.

I can’t remember when exactly it was that I first had something strange happen, but I’d say early 2021.

I knew I wanted to do something for myself again, so I sought advice in the form of Medicine Readings from my friend Emma Griffin, and that was when India & Rar was born.

I poured myself into creating this online space and being a mum. I was so busy focusing on everyday positives, gratitude lists and whatever I could do to make my new business work that I never really stopped.

Episodes of Blurry Vision

I remember breastfeeding Remy one morning; he must have been around three months old. I was sitting on the bed in our bedroom, a building site, unfinished stairs, and surrounded by bits of skirting board. I want to share the reality. My vision was suddenly all blurry like I was looking through a kaleidoscope. I thought it was in one eye, but it was both. It lasted around 20 minutes.

This happened weekly for a few months. I put it initially down to breastfeeding, maybe dehydration, or something else. I also wondered whether it was because I was drinking coffee and overtired. Eventually, I went to my GP and offered a telephone appointment. They told me to come in and have my blood pressure taken. I did this, it was normal, and I heard nothing more. The blurry vision went away, and I then forgot about it. Life was busy, and I had so much going on.

Running Became Harder

I run with my friend Roosje every Saturday morning. We’ve done it for years. The weird thing was since I had Remy, I felt like it was such a real struggle. My power seemed to be gone, I struggled to get up hills and didn’t enjoy it half as much as I usually did (the running part, not the time with my beautiful friend), but I put it down to baby number three and busy life. I didn’t think that six months after having River, I ran a half marathon; I didn’t think anything else could be up.

The Headaches, Coughs and Colds Started

I launched India & Rar in spring 2021, and it was great. It gave me back all that I was missing before, and I loved building a community. Starting a new business in the height of a pandemic and with a newborn is by no means easy; to add to that, we were still struggling financially. In the summer of 2021, I took a holiday-let changeover cleaning job on Fridays and Saturdays to support my family. It wasn’t something I ever imagined doing, but I enjoyed the time it gave me to think., This was when I clearly remember starting to get minor headaches. I’d be driving home from doing a changeover, and I’d notice a headache. I’d have to open the windows, and then as soon as I entered the house, it was busy and full throttle, lovely little boy chaos, and I’d forget.

I also had colds over that summer, quite a few coughs but never got it looked at as I just thought I was fit and healthy. ‘It's just a cold; I’d feel and move on.

A Lump in My Arm

One of the biggest regrets I have is how I was dealt with when I noticed a lump in my breast/armpit in June/July. I rang the GP and got an appointment to come in after several telephone calls back and forth. I was met standing by the GP in his office, who told me to find the lump. I located it. He agreed it was there and said he would refer me for an ultrasound, and that was that.

I was barely in the room for five minutes. I had to ask him to repeat what he said as I couldn’t hear him; the exchange was so quick. I remember feeling shocked; I’d been so worried about finding a lump and a part of me knew something bigger was at play. I was concerned but felt like I was an inconvenience, so I left and said nothing more.

Ignored and misdiagnosed

Three or four weeks passed, and I heard nothing; no letter or communication arrived. I rang the surgery to follow up. I subsequently rang a further three times and expressed my worry. Finally, a different GP told me to come in, examined me and said he would refer me to the Mermaid Centre at Truro Hospital for an ultrasound and a mammogram.

A Side Effect of the Covid-19 Vaccine

The scans showed an enlarged and inflamed lymph node. I was told it was a side effect of the AstraZeneca vaccine and sent on my way. I wish I had asked for a second opinion; my gut instinct told me that this was not the case, and I felt something was not right. I felt like I would be considered over the top if I challenged them.

I kept thinking: ‘the AstraZeneca vaccine was put in my opposite arm?’

I mentioned the appointment to a friend and Nick and my mum, and that was it; I didn’t want to be one of those people that talked of their ailments. Oh, how I wish I hadn’t made that choice.

Crippling Headaches

Fast forward two months, and I was waking with painful headaches and putting bags of frozen peas on my head. Walking upstairs was painful. Putting my shoes on made me wince. These headaches weren’t budging. They were unbearable.

I called my GP and was told I could have a telephone call with a GP in a week. Tuesday 10th November to be exact. That week went on, and by Thursday morning, I was in agony. My aunt told me to call the GP again. The problem was it took on average 20 mins to get through, I had two small children to look after. Spending 20 mins on the phone was pretty tricky whilst looking after them. I ended up calling and begging for an earlier appointment. I explained how unbearable the pain was and how it was increasingly hard to look after the boys with these headaches and was bumped up to the Monday. The very terse receptionist told me in the meantime to go to the chemist and ask for some stronger painkillers.

Peri-Mental Health Services Referral

Monday came, and I got the same GP that referred me to the Mermaid Centre. He was lovely and kind. I was asked if I thought it was because I have young children. He referred me to Peri-Mental Health Services and for a brain scan, which he said he didn’t think was overly necessary, just to check. Again I thought, ‘I’m a stressed mum, I guess’. For those who don’t know this term, the Peri-Mental team is for health problems that occur during pregnancy or in the first year following the birth of a child.

Sickness

However, it was unbearable by Tuesday morning, and I woke up in absolute agony. And then the sickness came. I rang 111 as I knew if I rang my surgery, I would end up nowhere, but I was worried about being a drain on the NHS. 111 were amazing. I explained my symptoms, and they told me to get to the Emergency Department (ED) immediately.

The Diagnosis

Fast forward two hours in ED - where they were incredible - a CT scan and blood tests. After the tests, I was called into a room by two doctors who asked me to get my husband to come back.

I knew something very bad was up. I’d just sent Nick back home as we had Remy with us, and it was getting nearer to bedtime, so I told them just to tell me as he’s over 40-minutes away.

I will never forget the eyes behind those masks.

They told me something along the lines of “your scans have shown lesions on your brain that are in line with cancer.”

I can’t quite remember the exact wording; it was all a bit of a blur. They said I need to stay under observation, have further scans and that the brain specialists are looking at the scan and I’ll be really well looked after.

The Lessons I’ve Learned

Since that life-altering moment, I’ve learned a lot. I had SEVEN symptoms associated with cancer but at no point did the medical experts join the dots together. My blurry vision at the start should have warranted much more investigation. It didn’t happen.

Just days before my diagnosis, I was referred to Peri-Mental. Do you know what comes up if you google misdiagnosed cancer or delayed cancer diagnosis? Terrifyingly, there are hundreds of women’s stories; yes, you heard that right, women’s stories of GPs telling us we are stressed or hormonal. It’s not ok; in fact, it’s dangerous!

We are the ones who know our bodies better than anyone, and it is so clear that the medical system is not built for us. We have to shout to be heard. Shout loud and keep shouting.

Don’t stay quiet; if your GP has to sit in discomfort because you question their view, let them!

If your GP’s ego is bruised because you demand a second opinion, let it bruise!

If you know something isn’t right, don’t let someone who doesn't know you hold so much power over your health and your future.

I’ve learned this lesson the hard way, and it is heartbreaking to think that my journey might not have had to be this hard.

Take care out there and listen hard to your body; it will tell you when something isn't right. If my story can help just one other person not go through this, then it’ll have been worth sharing it.

Sending love to you all, and thanks for all your support with India & Rar. Your orders really do light up my days!

Amber x