“Even when it feels impossible to carry on, and your blood runs cold with fear, your inner strength will guide you. Pain is inevitable, but suffering is optional and there are lessons to be learned in everything. Someday you will look back and realise what strength really is and wonder in amazement at what your fragile human body is capable of. We are far more than we ever realise until our seemingly perfectly curated world starts to crumble.”
Amber Morrison-Campbell 2023
A Rocky Start
2023: "Excuse my language but FML. I didn’t even get around to doing my New Year goal setting but if I did, this would not have been a part of it" I had said sometime in February.
Even if I'd had a crystal ball, I couldn’t have predicted the bump back to reality in store for us when we returned from the blissful bubble that was our Christmas holiday/ wedding/ honeymoon.
As our time away drew to a close, I knew I couldn’t hold out much longer without the scan results and then some kind of new treatment and pain plan. I needed to find out what exactly was going on and why I was in so much pain. I was prepared for a change of plan on returning home and I was ready to move forward. I was in so much pain. and feeling concerned about how much pain relief I was already on, especially without it scratching the surface. Nights were becoming unbearable as the pain in my back meant there wasn’t really a comfortable sleeping position, and I couldn’t lie on my front due to the pain in my stomach.
As soon as I got back I spoke to the lung team and was called into a meeting. They told me the cancer had spread to the C6 vertebrae in my spine and suggested targeted radiotherapy to this area. There were also quite a few other areas of progression which indicated that my current line of treatment (immunotherapy) was no longer working.
I was disappointed. After the chemo I'd gone onto immunotherapy and it had seemed to be working. I had few side effects, so I felt really lucky to be able to have this treatment.
We’ve always had a new drug that was approved last spring called Tepotinib in our ‘armoury’, so it was decided that I would go onto this drug. It’s an anti-cancer medication for those with non-small cell lung cancer that has spread to other parts of the body, and particularly for those with the Met Exon 14 Skipping gene mutation. It was cited as the wonder drug, but I’d had my reservations about it as it had some side effects that didn’t look overly appealing. I started on the drug in early February. Noone in the South West has ever been on this drug and to my knowledge there are only around five people in the UK on it, and all over the age of 70.
A Turn For the Worse
I’d been taking Tepotinib for around 17 days with a few mild side effects but nothing that was debilitating. On Monday the 13th February I went to bed and woke in the night with almost convulsive chills. I didn’t feel well at all, and the next morning a rash had developed all over me. I thought maybe I’d picked up a virus from one of the boys. However, as the day went on I was unable to get off the sofa, and for anyone that knows me this is very unusual. Sitting around during the day is not my vibe, I like to be busy and feel the wonder of being alive. Life is a privilege and there is so much to see and do.
By evening I was no better and my temperature was above 39 degrees. We rang the helpline and were told to go to A&E. I assumed when I went into the hospital that things would start to get better; I was so optimistic. It came as a huge shock that I seemed to be getting worse and ended up being admitted for six nights.
Unfortunately, my consultant was on a well-deserved holiday with his family as it was half term, and no one in the entire hospital had heard of Tepotinib, let alone treated a patient on the drug. It was a frightening position to be in. As the doctors had no idea what was wrong, I was treated for Neutropenic Sepsis and given IV fluids, antibiotics and pain relief.
There were moments when I felt like I wasn’t coming home. During the nights my fever would rise above 40 degrees. The rash had become so bad it felt like severe sunburn all over my body. I had to dig deep but my gosh, it was so hard: I was terrified. The symptoms from my reaction to taking Tepotinib were intensifying and evolving each day. I didn’t eat or sleep for four days and nights. I cried constantly. I didn’t know if I was dying. I didn’t know what was happening to me. All I knew was that I’d never felt this unwell.
Eventually I was moved to an isolated room on the Oncology ward and I began to turn a corner. Nearly one week after I arrived I was allowed back home.
Home Sweet Home
Home. I’d longed to be home the entire time I was in hospital. Home with my children and my husband. My safest space with my own bed, a bath and a place where I was not woken throughout the night for medication and observations.
It felt so good to be home yet I was left utterly exhausted and traumatised by what I’d been through. I didn’t want to see a single person other than my beautiful boys and Nick, which was a good job as I couldn’t with such a low white blood cell count. I wasn’t feeling myself at all, and it's incredibly hard for me to look back as I write this as I can still feel the pain and anxiety in my chest when I reflect on the experience. It makes me feel physically sick. I felt a shadow of my former self and was worried I no longer had the strength to be the person I needed to be for everyone, including myself.
I’d like to say this is where the drama ends, but unfortunately it’s not. I still had to make a decision about the medication. Reluctantly I agreed to try Tepotinib again on a lowered dose. The lung team advised: “Do not take it at the weekend, as you don't want to be admitted to A&E on a Saturday or Sunday.” So it was decided I’d take it around mid-morning on a Monday. I was so worried at first, but by the time Monday came I had filled myself to the brim with optimism and was convinced I'd be ok. And for five hours I was. I'd been out for a beautiful walk with my mum - it had felt like spring was on the way and I was full of hope. Every cell of my being thought ‘this is going to be ok’.
Back to Square One
Around 4pm that day I felt really cold, and got into bed. I felt chilled to the bone and despite sitting on a heat pad under a duvet with a hot water bottle I couldn’t warm up and it was getting more intense.
The onset reaction this time was far more severe. I was devastated to be back to square one, exactly a week to the day after being released from hospital and I felt like I'd hit rock bottom once again. It is hard to explain quite how poorly I felt, but I wasn’t sure both times whether this was just a blip or if this was it. Everything seemed to be failing and now I found myself without a suitable treatment to fight this cancer.
Two ambulances were called and I was blue lit to Royal Cornwall Hospital. I had a raging fever and was freezing. The ambulance crew said they needed to reduce my temperature so I was without blankets. I’ve never felt cold like it; my whole body was convulsing. To help me in this time I did some deep breathing - I’ve been reading up about breathwork and it helped to distract me. The mind is a powerful tool and I was able to help myself by marvelling at the experience of being in an ambulance and likened it to being on a rollercoaster. I tried to tap into that adrenalin to get me through: ‘You’ve never been in an ambulance before, Amber’, I told myself, ‘this is exciting, you love adrenalin, this is an experience’. This was my mantra the whole way to hospital and I think it helped, although I’m definitely not ready to repeat the experience!
This time round I was given IV fluids, antibiotics and painkillers and moved to a room on the majors ward in A&E.
Luckily the second reaction didn’t last as long as the first; I'd had a couple of weeks break in between the two doses and only taken half a dose this time. But it was very apparent this was not the drug for me. It was devastating in equal measure to have been so poorly and also back in limbo with progression and no clear plan.
I am not Cancer
So where next? The path of cancer isn’t linear, everything can change from one week to the next. Things can progress quickly, but with the right measures in place it can also be halted. This is where we need to get to and I am optimistic there is a way to do this. I just need to be patient and make some more lifestyle changes.
On reflection I can now see that the stress I experienced in the Autumn of 2022 probably contributed to the progression. So I am trying to eliminate stress from my life. I’ve had to be really tough and put boundaries in place to keep me sane, and sometimes putting those boundaries in place makes me feel vulnerable. I like to please people and setting strict boundaries takes me right out of my comfort zone and I feel huge amounts of guilt.
I long for normality, but I’ve had to ask all those around me to be mindful about the small part of me that has the cancer. There is still a whole massive part of me that isn’t, and it's important that we don’t forget that. This blog is where I feel most comfortable in sharing updates. It's really difficult to relive trauma over and over again by relaying recent events to everyone close to me.
There is so much noise surrounding people with a cancer diagnosis that it can be difficult to navigate, so I find I need time on my own to recalibrate. Before cancer I hated time on my own. Now I crave it and sometimes that means me having to say ‘sorry, I can’t see you’ or ‘please don’t come over’. My home is my safe haven and a place where I can find solace and peace, so having lots of visitors hasn’t been a priority for me recently. This is very different to the old me. I do mourn my old self. I didn’t have anxiety about seeing people. I didn't ever feel like a hamster on a wheel that has to make 20 phone calls to plan a couple of hospital appointments. I was free. I know that in a matter of weeks these feelings can change, but at the moment I’m allowing myself the time and space to feel how I feel. And, I am learning to say no and stand up for myself a bit more. It's getting easier and I am less tired, but I find just one task a day can wipe me out.
I hope that as spring arrives, things will change. I have so many plans for 2023. I’m running the London Marathon, which might seem crazy considering the start to the year I've had. But I have little intention of breaking myself in the process of doing it: my focus is to raise funds for The Roy Castle Lung Cancer Foundation. I also hope to show others that in the face of adversity you can still live a life with purpose, and that beautiful things can blossom and bloom in the murkiest of waters.
I am running the marathon with my new husband, and for us it's going to be a really special memory. We’ve both had to put our competitive natures to one side and will run it with the sole purpose of trying to make a difference. It doesn’t matter about time, there is always someone faster. For me, completing it will be an achievement in itself. I still feel pressure from other running friends that obsess over times, but I need to remind myself that the pressure comes from me and that they aren’t running with stage 4 lung cancer. For me and Nick this marathon is going to be such a special moment in our lives, and when you are in my position this is what gives you strength and hope.
Before my diagnosis I’d never heard of Roy Castle Lung Cancer Foundation. The charity has funded millions of pounds of essential lung cancer research. They support everyone affected by lung cancer. They raise important awareness, prevent future generations from getting lung cancer and challenge the misconceptions of lung cancer. Roy Castle was a TV personality who had always blamed passive smoking during years of performing in clubs and pubs for causing the lung cancer that eventually killed him. Before he died he helped raise millions of pounds to help set up a world-class centre for research into the disease. It was also down to Roy Castle that the smoking ban in pubs and clubs was implemented 11 years after he died.
So on the 23rd of April we will be ‘jeffing’ walking/running/laughing/crying and probably talking my way around the London Marathon. I know that some people may have an opinion about this, but my heart tells me it is the right thing to do. After 42 years of life on this planet I choose to listen to my heart, not to the advice of others, which I know comes from a good place but just adds another layer of stress to an already brimming pot. So please, if you can support us in our bucket list wish, not just by sponsorship but by finding it in yourself to put our hopes before your own beliefs, then please do. If you had been told that your time might be shorter than you had expected you would want to do all of the things that you had talked about, too. Nick and I always said when our children were older we wanted to do the London Marathon together - we didn’t expect in a million years to be doing it under these circumstances but here we are.
Party with Purpose
As I've not written in ages, I do have a fair bit to cover. My next post will be in a week or so and will cover the gold ticket event of the year that I am hosting with the help of The Eden Project and a team of fierce, formidable and amazing women. We are calling it a ‘Party with Purpose’ and are promising a night of fun, great music, inspiring speeches, giving back, delicious food and an amazing auction. We will be raising for Roy Castle & Choose Love, two charities that have captured my heart.
If you’ve got to the bottom of this blog - thank you.
Thank you for being there, reading this and weathering this storm with me and listening. Please share as I want to help spread awareness and give an insight into my experience of living with this. If you want to reach out to me I might not always respond immediately and sometimes might need prodding (memory loss from the time in hospital means I can’t remember all the lovely messages I received and there were a lot), but please do. I‘ve made some wonderful friends through Instagram over the last year and half, you keep me connected and fill me with inspiration on the daily.