Health Update: Cancer is not straightforward

I’ve not written an update on my health for a long time. Sometimes, I find cancer completely overwhelming. Appointments with my oncologist have been like learning a foreign language, and I now feel like my newfound role is studying Lung Cancer with Met Exon 14 Skipping Mutation and trying to make sense of not just the diagnosis but understand all the medical and scientific jargon that comes along with this beast.

Since finishing my chemoimmunotherapy in March, I’ve had immunotherapy every six weeks. Immunotherapy treats cancer by harnessing the power of the body’s immune system, and to this point, with the chemo and immunotherapy combined, we’d seen a positive response to the tumours in both my brain and my chest and lungs.

Confusing Scans

A scan in June left us all scratching our heads; since then, it has been a tale of mixed emotions.

All in all, June was a fun month. My treatment was working its magic, and I was in excellent health. I’m sure many of you saw me dancing at the Eden Sessions and losing myself in the fun of Glastonbury. Generally, June was filled with love, laughter, sunshine and making amazing memories with friends and loved ones.

My June scan showed mixed results. The tumours in my brain were still responding to the immunotherapy and were shrinking. My chest, however, was getting worse. We felt hopeful yet confused. Cancer is never straightforward, and this unwelcome imposter in my life is good at hiding and finding ways to trick us.

I talked with my Oncologist about the different options of treatment going forward, with more chemo, radiotherapy or targeted drugs. It was decided that we would hold off from these and have a mid-scan instead. This was due to the results being inconclusive and to provide more information which would ultimately allow us to make better decisions.

Headaches and Scanxiety

Since my last appointment, I’ve felt pretty unwell. I’ve been having some headaches and a new loss of appetite. I put this down to the covid booster jab and then the heat. However, the symptoms just kept lingering. After a week or so, I started to get a feeling that this wasn’t anything to do with the vaccine so I spoke to the lung team.

It was decided to get me in for a scan immediately. This was booked for the Sunday of that week (24th July 2022). By this point, I was aware of my scan looming and admitted to the specialist nurse I was getting worried. She said there is something called scanxiety, and it's very common for cancer patients to experience in the lead-up to scans. Sunday came around quickly, and just as I was leaving the house, psyched and pumped for the scan, I got a phone call from Royal Cornwall Hospital to say that the CT machine had broken and the technician wouldn’t be available for three hours to fix it. Needless to say, the scan didn’t happen that day.

My scan was rescheduled for Tuesday 26th July, two days later. I still can’t drive, and so anything that involves appointments and travel comes with meticulous planning and childcare arrangements followed by organising travel, all involving at least three or four phone calls (yep, it's draining, and I sometimes feel like I struggle with this more than that actual cancer).

I was nearly 40 minutes late for this appointment, thanks to gridlock traffic on the A30. Welcome to Cornwall in the summer. A great place to holiday and an amazing place to live, but it comes with its challenges at times. I’m very grateful that they still did my scan despite the lateness.

After the scan, and to calm my anxiety, I went to Heligan Gardens with a friend. My family and I love it there. It’s a magical place where you can be in unspoilt nature, fill your lungs with fresh air and get some exercise, while the children can run free for a few hours. I didn’t look at my phone all afternoon.

It was only when I got home and saw missed calls from the hospital and an email asking me to call them that I had a gut feeling something wasn’t quite right. Unfortunately, by this time, it was too late in the day to get hold of anyone, so I put it to the back of my mind as much as I could.

I called the team the next morning as soon as the clock turned 08.30 am, and got through to my specialist nurse. She has supported and guided me through the last nine months. She asked if I was ok to talk and did I have someone with me. I knew instantly something was wrong. When I had the scan, I knew; I could just sense it.

Migration within my brain

My specialist nurse explained briefly and kindly that my consultant had looked at the scans, and there had been some migration within the brain. It was clear we need to look at it further, and could I come in to speak about pain relief, steroids and organising an MRI?

I cried a lot. I sobbed down the phone to the poor lady. I felt terrible for her having to call me and tell me this information over the phone, and I cried because, more than anything, I hate steroids. I was on a very high dose of steroids from November until February, and I felt unwell; I couldn’t sleep and put on 7 kgs in weight.

Many of you reading might think people who could potentially die of cancer should feel grateful just to be alive. I’ve questioned this a lot, and I’ve had this thought racing around my tumour-ridden brain and actually, I don’t think anyone can comment unless you are living with this illness. The unseen psychological effect of this is a constant reminder when you look in a mirror. Or when happy, smiling pictures of you are shared on social media with your face looking so swollen and puffy it looks like you should be auditioning for the part of Alvin in the Chipmunks. It’s a really hard reminder of what you can’t see. Be kind. We feel everything, and that is ok.

Friday came, and off we went to see the lung team; I’ve been seeing them for the last nine months now, and it feels like we are working together to make the right decisions for me. It also feels like they really care. I’m an unusual patient for them; most patients are over 70, have smoked and had a host of health complications due to lifestyle choices and age.

As soon as my consultant started explaining that there was some swelling in my brain due to the lesions (brain mets) showing a small amount of growth, he managed to make me feel that it was ok. He’s got this, and we’ve got this; he’s on it.

As I write this, my family and I are driving through the French countryside to Bordeaux to my stepdad and mum's house. The team were aware of my holiday, and for a slight second, I felt it might be hanging in the air that I might not make this trip. Luckily I got the green light along with some strong painkillers and a lot of steroids (only to be taken if my headaches get so bad I need them).

We have a loose plan; an MRI is scheduled for when I get back. I was asked, are you ok with that, can you cope with another one? Hell yes, was my response. We are pretty lucky to have access to all the medicine and scans we have in this country, and I feel that especially now. I often find it hard to believe people can think any different when there are people that don’t have this privilege.

New treatment plan

It’s expected that my treatment will change; the next MRI will guide us in that respect. The scans will also be sent to The South West Neurosurgery Centre which is based at Derriford Hospital in Plymouth, where they will decide whether they can zap my brain with radiotherapy there, or whether I go to Bristol for Gamma Knife surgery (which is done by laser and computer).

I’ve also been offered a relatively new targeted drug called Tepotnib, which is used specifically for Met Exon 14 Skipping Mutation. I’d be the first person in the UK to take it as it’s only just been cleared by the FDA to be used in the UK on the NHS.

Furthermore, there is also a clinical trial in the UK for a very new drug called Vebreltinib which I am channelling my ‘rebellious hope’ and considering.

I feel very lucky to be able to have all of these treatment options. I’m pretty sure without the NHS and medicine, I wouldn’t be alive at the moment.

Finding the light

So for the next three weeks, I’ll be swimming, cycling and eating my way around the beautiful Bordeaux countryside, making more memories with my children and Nick. Whilst on paper it might seem scary to some, I don’t feel that. I feel more privileged than ever. I have, in my mind, one of the best Oncologists around; he listens to me, is aware of what is important and cares about the quality of my life. He even manages to make both Nick and I laugh every time we see him. These are pretty amazing skills in my mind, and someone that has a sense of humour and is kind is high on my list of priorities in the people I surround myself with. If you are ever lucky enough to spend any time with my circle of friends, you will see those qualities. I AM LUCKY even with cancer.

I’m going to be filming and taking pictures of our trip and sharing them on Instagram. I know Instagram and social media get some negative press, but more and more recently it gives me comfort, in that one day I might not be here, and my friends and family will be able to look back on these times and remember it wasn’t so bad. When it feels like you might be swimming against the tide, you can still actually have a lot of fun and live a great life, rather than feeling sorry for yourself and bringing all those important, special people around you down.

So, now it’s time, more than ever, to make the most of the summer, enjoy time with friends and family and make fun plans for the future to create memories with my babies and Nick.

Love to you all,

Amber xx