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Love, Laughter, Lows, Lessons, Lumps and This Beautiful Thing Called Life

“Life has its ups and downs. When you are up, enjoy the scenery. When you are down, touch the soul of your being and feel the beauty” Debasish Mridha

Life seems to have been on fast forward the last six months. It’s been busy, hectic, filled with fun, tears, happiness, sadness, loss, new beginnings and adventure (pretty sure I’ve missed a fair bit out in that description but you get the jist) at times it’s all felt a little too much but I think that sums up a normal six months in anyone's life.

My last post feels like a lifetime ago. It was written in October and posted in November after I'd run the Amsterdam half-marathon. Life has changed immeasurably since then. It's been quite the ride; so very bumpy at times but wrapped with the most joyous moments and if I am completely honest, some of the best days of our lives. Isn’t that a crazy thing to write? Especially coming from someone with stage four, apparently incurable lung cancer with a mutation no one’s ever heard of and so unique it sounds like it's from another galaxy. I have actually been told it’s from another galaxy, but that is a whole other story! Yet never a truer word have I written. I’ve felt so very happy so many times in the last year and a half.

I’ll start right back in October during my half-marathon in Amsterdam. I’d been looking forward to the run and the trip for a long time. I’d been kind to myself during training but managed to get the miles in and was comfortable running the half-marathon distance. In the two weeks before the race I’d started to get some shoulder pain. It was pretty hard for me to articulate the location of the actual pain; it was as if it was in my back but when I was running it was in my chest. It wasn’t until the day of the actual race that I really started to feel uncomfortable and had real pain. Up until that point, I’d experienced no pain whatsoever when running. I put it down to pushing myself harder as I was running with a friend. But on reflection, I had been feeling more run down.

I mentioned the back and chest ache to the lung team after the run. I’d gone into the hospital for a check-up and after some conversations, it was put down to a little infection in my chest. Alongside this pain, I’d also developed a lump in my jaw. They didn’t think either were related to the cancer as nothing was showing on previous scans, and we were confident the immunotherapy was working. With all of this in mind, I organised to have physio thinking it was something to do with running. I still had a gut feeling something wasn’t right but I just had to get on with life. “Not everything leads to cancer, I guess” was the thought process.

As the month went on the pain in my back and chest wasn’t getting any better. It was becoming more and more uncomfortable at night and especially when lying down. I was taking a lot of pain relief around the clock to manage it and to sleep. But I had big secret plans going on in the background and I had to power on through.

Behind closed doors, Nick and I were planning, with the help of our closest friends, a trip of a lifetime with a secret wedding. We’d gotten engaged nine months before I was diagnosed and had been looking at various venues. But, since the day of the diagnosis it felt impossible to go down a traditional route, I couldn’t face the thought of a big wedding. So, with a last-minute suggestion of ‘why don’t you do it in the Maldives’, the seed was sown and it was all systems go with just a small matter of trying to stay fit and well enough to make sure we could pull it all off. Throw into the mix the loss of our buyer on our house sale seven months down the line, on the day we were expecting to exchange. It's safe to say things were becoming increasingly stressful and we were at breaking point, again. We were trying to eliminate stress in our lives by moving but, somehow unintentionally we found ourselves in the worst possible situation, which I am now aware is happening across the country, with one in three house sales falling through.

Somehow we got through the grief and stress of the house loss and I powered on through the pain. We secretly did the legal part of the marriage process here in the UK at the registry office with Nick's older sons as witnesses followed by a celebratory lunch at The Pig at Harlyn.

We chose to focus on all the positives instead of what we’d lost and luckily there were a lot of those. I find now it's as simple as a choice in my mind. Something unexpected happens, and it’s devastating, but if I make the choice to search for the lessons in the situation then it changes the narrative in my head and over time, I can find more positives. That is exactly what happened with the house situation, but, don’t get me wrong there were tears and anguish and stress as we had so much riding on the sale and moving to a new home with a fresh new start.

By mid-December the pain was worse. I kept complaining about it but nothing had presented on the most recent MRI scans so no one thought anything was amiss. Everyone but me, that was. I knew there was something wrong and I wouldn’t leave it. Around this time my leg also started to tingle and I was getting an uncomfortable burning pain in my hip area. Eventually, due to the levels of pain and a prompt from the physio to my consultant, a bone scan was booked for a few days before we were due to fly to the Maldives for Christmas and our elopement. The specialist lung team that I am assigned to within the NHS were the only people that knew about our secret wedding, and so they understood how important it was that I got on that plane!

"Whatever happens, please do not tell me the results before I go”, I reiterated over and over again to the lung team. I could feel it was something more than a muscular pain, it was in my bones, and it was so painful. I am still, to this day, finding it hard to articulate pain. Perhaps another subject for another time, but I’ve spent a lot of my time over-analysing what I say and the impact of what I say on others. I’ve spent a lot of my adult life suppressing my feelings, particularly around health and well-being. I guess because I never wanted to be viewed as a ‘complainer’ and I’d conditioned myself always to try to be relaxed and easy-going. In the past when I had spoken up and talked about my emotions or voiced my opinions rightly or wrongly I’d felt ridiculed and been told I was ‘too much’ or ‘over the top’. I am still trying to heal from these labels and realise I am none of those things. Toxic relationships spanning right back to my childhood have had a way of lingering and little things that people say over a lifetime became a constant shaming inner dialogue. It's crazy, but that's what happens to most of us sadly.

My focus was getting my children and Nick on that flight to the Maldives. I was going, and nothing was going to stand in my way. Certainly not the cancer or pain. I did have several conversations with the lung team in the lead-up to my departure, and I know they knew the last time I spoke to them. I put it out of my mind and off we went.

For some reason, keeping the wedding secret seemed to be so easy and not one person cottoned on, Christmas build-up was a great distraction.

We made it to the Maldives, travelling with friends and five children between us. It was more than an adventure and even involved sprinting 2km across Frankfurt airport and nearly missing our connecting flight. With more small people than adults, it was mayhem but looking back it was all part of the journey but oh to be a fly on the wall watching the madness unfold. We finally all arrived in paradise. Every day I think I pinched myself that I'd managed to get there. There had been a few conversations where it was looking like the lung team was hinting at a change of plans so when our feet touched the beautiful white sand we all felt like it was a dream come true and it really was.

I can’t find the words to explain how special this trip was. We’d overcome so much. A year and one month (more or less) to the day post-diagnosis and we’d travelled as a family to somewhere that had been posted on my vision boards before I even knew vision boards existed. I’d spent hours over the years looking at holidays to the Maldives and we’d finally made it with our three children and some of my most favourite people in the world. It was more than incredible and I will forever cherish every memory. Don’t get me wrong, with three children in tow it wasn't without its challenges, but every one of us felt a part of nature on that holiday. I’d always seen the Maldives as somewhere where there is not very much to do. I was so wrong; from every angle, there is something to see; fruit bats adorn the trees and fly majestically above heads; Herons glide over the beaches; and hermit crabs greet you every morning and are everywhere. It’s a natural playground in paradise for children and adults and underneath that amazing sea is so much colour.

It felt like another world that we were discovering each day and we all felt a privilege and honour to feel so immersed in nature.

We married on the 23rd December 2022 and it was just incredible - you can see a few pictures I’ve shared on Instagram. The happiest day of our lives, a cliché maybe, but it really was so special to do it on such a small scale, and it felt really private and just about us. Which was exactly what we needed.

Meeru, the island in the Maldives that we visited, will forever be in our hearts, as will the people that helped us pull this off and our friends and family that were so delighted for us and understood our reasoning for eloping.

We flew back to the UK and it was pretty much straight into the hospital. As we are now stepping into 2023, those bone scan results and the new treatment plan this will be covered in my next blog post.

Before I sign off however, I need to once again express my gratitude to all of you for reading my blog, for sharing my posts and for helping me to share and give an insight into living with a stage four cancer diagnosis. By reading, talking and sharing all of this, you are helping me to spread vital awareness about the signs of lung cancer, address the misconceptions that surround lung cancer as well as hopefully, in some way help those that might find themselves in my situation or those that are navigating a friend or family's diagnosis.

I appreciate you all. Thank you, thank you, thank you.

Much love,

Amber xx

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