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From Morning Coffees to Morning Chemo

Updated: Feb 6, 2022

There is no question that I am a glass-half-full kind of person. Ever the optimist, I look for the positives everywhere and in everything. I think this comes from my dad, who instilled it in me when I was growing up. He taught me to seek good in the face of adversity and to always look for the light even when the world feels dark.

Ever since I can remember, I’ve been taught that I can do anything I put my mind to, and that the power of our minds is limitless. I believe this with my whole heart, and when I find something hard, I repeat those words in my head. Cancer is hard, there is no question; and now instead of every month, I find myself repeating those words every day, sometimes even every minute. I repeat over and over; ‘I can do this, I can beat this. I can do this, I will beat this.’

I have spoken a lot about my journey so far, and I realised what I haven’t explained is details of my diagnosis. To keep focused on healing, the big C doesn’t have a place at my table. It’s not something I want to focus on as I believe that what you give your focus to, only grows. This is why my focus is purely on living a happy life and smashing these confused cells out of my body as quickly as possible.

My Diagnosis

My primary diagnosis is Lung Cancer and it’s reached Stage Four which means it has spread to other areas of my body. Those other parts are my chest and brain. I know that is hard to read, trust me, it's even harder to write.

As I write this today, I’ve had three sessions of chemoimmunotherapy and each time it’s getting that little bit harder to recover.

Before each session, I have a consultant appointment. Something I haven’t shared until now is a development that came from my appointment on New Year's Eve.

In December, I agreed to the treatment I am currently having before receiving the Genealogy test results which determine the mutation of my cancer. It’s important to have this information to ensure you have the most effective intervention. However, I wanted to start treatment as soon as possible and that was also the recommended approach from my Oncologist.

I now have this information and whilst daunting, it’s also quite surprising.

I have a very rare form of cancer called Mesenchymal-Epithelial Transition (MET) Exon 14 Skipping Mutation. It’s only diagnosed in 3% of Lung Cancer patients, the majority of whom are over 70! I have no idea why or how it has found me and it’s going to be hard to find that out. It’s so rare, little research has been explored.

Now that I’ve had three sessions of chemoimmunotherapy it’s time to have a scan to understand how my tumours have responded.

I’m nervous of course, but once we know this, we then get to decide the next steps for my treatment.

My First Experience of Chemo

I had my first dose of chemo on 17th December and for a few days afterwards, I found it hard to recognise my body. There was a horrible taste in my mouth, my body felt like it was full of chemicals and this might sound strange, but the texture of my hair felt different too. In so far as what I was expecting, it was not actually as bad. If you can imagine morning sickness and a bad hangover combined that lasts for a week or so, you’ll be in the right space. My appetite has changed too. Flavours are different and the inside of my mouth feels odd, like it’s not mine.

Treatment Number Two

I welcomed in 2022 with my second dose of chemo. A five-hour stint at the hospital and then just over a week of feeling horrendous. My body really found this dose hard to take. It knocked me sideways a little and I really needed to rest in order to steal at least a few good hours from each day.

I think I’ve shared this before, but when I feel myself getting fed up with it, I hear my inner voice shout ‘Pac Man Go’. It helps me make sense of all these thoughts and feelings and is a good reminder that all of this is part of the journey, moving me in the right direction to get better.

Finding my Feet

In the weeks between my sessions, I am doing a lot of learning. Trying to find anything and everything that might help me fight these confused cells.

Image: The Urban Kitchen

I’ve been in touch with an amazing nutritionist called Toral Shah of The Urban Kitchen. She has helped me sift through the vast amount of information out there and I feel confident in the plan she has made for me. It turns out that exercise is incredibly important alongside rest. This is music to my ears as being outside, walking and running, makes me feel like me. It is what makes me happy.

Knowing this, I changed my routine ahead of my last dose. I was up at 6.00am giving the boys the best possible start to their school day. It really makes a difference for me to feel like I’m being the best mum I can for them. It makes my heart feel peaceful.

I am no longer able to drive due to my brain tumours and so Nick does the school run. I stayed at home with little Remy until 9.00am when my mum arrived to take over the reins.

I went to the Post Office to send out all of the wonderful India & Rar orders and then I went to the gym. Toral advised doing an aerobic workout on the day of my treatment and so I did a short run on the treadmill, swam a little and then got ready to head down to the hospital.

It was actually a lovely start to a day of treatment. I wrote this blog with the drip in my arm and it’s not so bad. It feels surreal but it’s nice to sit down for a while.

I have two types of chemotherapy and an immunotherapy treatment and the whole thing takes about five hours. Usually I sit and write or read. Sometimes I listen to music. Most recently I listened to Ludovico Einaudi (an absolute favourite of mine. I find it so relaxing). I’m reading The Burden Giver by Graham Greave which is a lovely page turner.

I’m in safe hands

I feel like I’m in very safe hands. My consultant is brilliant and from the first moment I met him, I trusted he was going to do a great job.

So it’s now a waiting game and as I write this I feel positive.

It’s early days, and everything is still so new. I’m sure I’ll find a rhythm and soon know exactly what is what. Until then it’s a bit like fumbling around in the dark.

I know the stats, however, one thing I feel certain about is that I believe I’m going to kick this.

All of this has been a stark reminder to find joy in the little things. Be happy with your life. Forgive and forget as life is so short, cancer or no cancer.

Nobody knows what is around the corner so take it from me; drink the wine; eat the cake; enjoy all the good food. Go for the run, buy the dress, breathe in the fresh air and laugh as much as possible. Have fun, spend time with family and friends. Hug your loved ones, but most of all enjoy every single moment of this beautiful thing called life; because it is so unbelievably precious.

All my love

Amber x

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