Nearing one year with cancer
I'm often asked if I am scared, and I receive comments on how brave or inspiring I am. I am not sure I am any of those things. Is it inspiring to have cancer? I don't think I am brave. I feel like I sometimes plaster on a brave face, as living with this definitely makes me stop and think about the ripple effect of being in the centre of a cancer storm. I feel a great deal of guilt and frustration when it comes to life at the moment, a burden at times to my family, and then intense irritation at relaying information a gazillion times over.
My main priority always is my family, my three gorgeous boys and Nick. Like most, I desperately want to create a happy, loving environment for them to grow in that protects them from hurt and struggle. So, when life throws an almighty curve ball like cancer, all of this gets thrown up in the air whilst I struggle to maintain some normality at home. How do I protect my family from all of this? I wish I had the answers, but I don't. So I'm reading, watching and listening as much as possible to try and find out. I want us to live a happy life together, full of love and laughter. I don't want to allow this cancer to overshadow any of that.
This was easier said than done, when I experienced Stereotactic Radiotherapy Treatment (SRT) (also known as Gamma Knife Treatment) for the first time a couple of weeks ago. My shield was fitted the week before, and my lovely friend drove me there. This made for quite a fun trip and a great catch-up without our kids. We laughed at how much we enjoyed the journey and questioned whether or not that was weird, given the circumstances. Still, if it makes you feel good, no matter the events, it's worth it.
The radiotherapy took an hour, and they targeted three lesions on my brain during that time. I was pretty nervous entering the room. Being clipped into the mask was a definitive moment where I took stock and felt the full force of the surrealness. I kept saying to myself, "I can't believe this is happening". Thankfully I managed to quieten my mind and eventually zoned out during the SRT treatment. I visualised light in my brain and all around me, so I couldn't believe it when they told me the treatment had been completed. I was ready to leave after what felt like 20 minutes.
Highs and lows as 12-months loom
Post SRT treatment, I've had very few physical side effects. However, I am feeling low and had been expecting to feel this way, as we are coming up to a year since my diagnosis. In the last two years, around this time, we've had some pretty life-changing events fall on us. It has been quite triggering and hard not to think about the enormity of it all and what else might happen. However, this time of year also brings happiness as it's the birth date of my youngest. So, I fully intend to shower him in love and forget about the trauma of the last two years that's affected my family.
For now, it's treatment, as usual, going forward. I'll continue with the immunotherapy, and then I'll have a brain scan in three months, which will indicate the outcome of the SRT.
Throughout this journey, I've never wanted to feel any self-pity; I've always strived to remain strong for those around me. I hate the fuss that cancer and treatment create.
Finding ways to cope
I struggle with relaying information and the questions I get before, after and sometimes during my appointments and treatment. These all come with care and kindness, which is beautiful. Yet, I feel like I need to hold others' emotions simultaneously with my own and my family's. It's too much, and so I've decided not to share details of my appointments anymore. This is not because I want to withhold information but because of the detail and volume of conversation that inevitably follows alongside the heightened emotional reactions.
Often things that my friends and family find frustrating, like waiting for scan results or not having dates aren't things that bother me. What does, is when people declare how frustrating it is. It's not positive or constructive to pick apart these nuances on top of the obvious negatives. I can't control my timeline, and cancer is not straightforward - it's been a journey to accept this, and I need my friends and family to understand this too.
My life will be full of appointments and scans for the foreseeable future. It's my reality; I know this, accept this and need to make it my normal. My challenge is to navigate my way through feeling happy and optimistic. As I near the 12-month milestone, it's becoming harder and more draining.
Cancer doesn’t define me
Cancer doesn't define me, and I don't want to spend my time discussing it, particularly with those closest to me. Feeling like this isn't about shutting anyone out; it's about finding a way to live normally whilst in a raging shit storm.
This time last year, I ran my own company, had so many projects on the go, and had big dreams about the future. I still have all of this. It's just on pause as I don't have the stamina to be everything I need for the boys and drive and grow a business.
I will say that I am not feeling my best right now. And that's ok. My oncologist talked about the symptoms of PTSD, which helped me make sense of how I feel.
It's hard to write this down and before I continue, please know that my ramblings here are never a call for help. Just a way to get my feelings out on paper; sometimes, I feel completely different the next day. The cancer rollercoaster doesn't stop.
Finding strength
I do have hope and some wonderful positive plans in action to give me further strength in the coming months. I know I am going to need this.
I find it tough when people say, "you are going to become cancer free, not if, when." It's deeply confusing and adds a another layer to a pressure pot already at its limit. Toxic positivity - which is the belief that no matter how dire or difficult a situation is, people should maintain a positive mindset - comes from a good place, I know, and I believe in the power of the mind. I also know what is on paper and what could happen. I don't think it will, but I'm not sure I need to add to this load anymore.
Autumn is upon us, it's pouring down with rain, and I've got a snoring toddler next to me. I've not been feeling my best self recently, so I've decided to find the Amber that was here a year ago.
Next weekend I am off to a meditation retreat, and then I'm off to Amsterdam with my Dutch best friend, and I'm hoping these little breaks will stoke the fire again. I'm running a half marathon in Amsterdam, and then at the end of November, I am doing one in London, too.
I've had so many people share their opinions on my running. From those that encourage it as it makes me feel good to those that believe I can't heal as it's hammering my body. I will share that at 41 years old, I fully respect my body, and I would not do anything right now that didn't feel good.
Raising money for charity
Another big part of my decision to do the run was to raise money for Roy Castle Lung Cancer Foundation. I was so very grateful for the Go Fund Me fundraiser that my friends so kindly put together for me. Still, I couldn't help but feel guilty about it, not for the happy memories it has enabled me to make with the boys. The joy I have witnessed on their faces is truly exquisite. But, I know some people have expressed it's not positive. I disagree entirely but had decided back in the summer that I would raise the same amount for a chosen charity. Roy Castle funds millions of pounds of essential lung cancer research, looking for ways to detect the disease as early as possible and save lives. They support everyone affected by lung cancer – from diagnosis, through treatment, to living with the disease and end-of-life care. They raise awareness, prevent future generations from getting it and challenge the misconceptions about lung cancer. They do all this so that the diagnosed can live well with lung cancer for as long as possible.
So, over the next year, I'll raise money and invite you to lots of things like coffee and cake mornings and clothing swaps. Dom, Emma and all my fashion friends, you know I'll be picking your brains on this one. I'm also looking at holding a fundraising ball. Rather than just asking people to donate, I will create unique events that will raise the charity's vital money. If you'd like to help out, drop me a line.
Also, in a moment of madness, I've put Nick and my name down for The London Marathon (we've entered the ballot but also requested gold bond places if we don't get in). Yep, you read it right; I've decided to be the runner with the lung cancer diagnosis. I've always said I'll run/walk/run unless I can't and right now, running is painless and gives me energy. I've run the London Marathon twice before but never whilst I had lung cancer.
It's going to be different and I have four hopes this time. These are:
To run it with Nick as we've always said we wanted to do it.
To finish the race with a smile on my face.
To enjoy it.
Not to focus on a time.
I've tried to run my previous marathons to a time which is impossible as it's so busy. It is a huge achievement to run or even walk a marathon. I don't see the point in aiming for a time, as who are you doing that for anyway? My children don't care what time I run it in, neither does the charity, and there is always someone that will do it faster. Life is full of pressure and competition. My own self-worth isn't measured by a sub-four marathon time. But, I will remember feeling happy whilst running, soaking up the atmosphere, and being a part of all these people running for their chosen charity. So watch this space.
Love to you all,
Amber xx