Leeanne Davies-Grassnick, London
It was Boxing Day in 2021, a day that I will never forget, I gave birth to our first child, Caspar. And despite a three-day labour, my wife, Emma, and I were in a wonderful bubble. It was the best experience of our lives. The early months of motherhood are always hard, however they were made even tougher for us as we all got Covid three days after birth. Unfortunately I also had gotten various infections and was given a lot of antibiotics, which weakened my immune system. It also didn’t help that I was incredibly sleep deprived; I was often up all-night breastfeeding Caspar. Emma and I experienced all typical motherhood moments, “Quick the baby is sleeping, shall we eat, nap or shower?” Regardless it was the most precious time and we were so happy.
In April we took our first flight as a family with Caspar to Corfu – our happy place. My sister lives there and my parents spend half of the year there. Normally we would be hiking all day, but this time I couldn’t walk for longer than 10 minutes. I started getting sharp pains under my ribs and it worsened over the two weeks we were there. Caspar is a big boy, and so we all thought it was a muscular injury because I was constantly picking him up, carrying him and breast feeding him where and when needed.
There was one occasion where we enjoyed a meal together as a family but afterwards I felt ill and was sick. Emma and I thought this was a bit unusual but we put it down to being extremely tired, we were new parents after all. Three days after getting back to London I was suddenly in a lot of pain. This time the pain was different. It was sharp and constant (not only when I was walking longer distances). As a doctor Emma examined me (I didn’t see the need before, after all I thought it was muscular). Immediately Emma said we need to go to A&E, she was able to feel my liver, which is not normal. So we headed to A&E with baby Caspar.
At triage, we were referred to the GP section of A&E. The waiting time was to be more than four hours. I could barely stand I was in that much pain. By this point I was getting chest pain. Luckily we spoke to a nurse and I was fast tracked. The GP on call examined me and referred us to the actual A&E section. He agreed that something was up with my liver. Once referred to A&E they took my bloods and observations. After three hours we were seen by the A&E medical doctor. My blood results showed that my liver function was deranged and the doctor recommended we do an ultrasound. I was offered an ultrasound as an outpatient, which would take around three to four weeks. Emma and I knew this was not acceptable. We looked at each other and agreed that we weren’t leaving. Luckily Emma new the right terminology as a doctor, they listened to her and finally got someone from the surgical team to speak to us, who agreed that I needed immediate investigation.
I had an ultrasound, CT scan and more blood tests within 24 hours. The CT scan revealed that I had lesions in my liver, which looked unusual and needed to be looked at further. Recommendation was to perform an MRI and potentially a colonoscopy. At this point they reassured me that it may not be anything to worry about, but asked me a lot of questions about weight loss and recent traveling to countries with risk of parasites. This was Friday and on Monday we were lucky enough to be able to meet one of the surgical liver consultants at Kings Hospital to discuss what this could be.
At this point, no one had said cancer to me – we obviously thought this could be an option – but no medical person had said it out loud. I am 38, young and fit – why would cancer be a potential outcome… So we thought. At the appointment, whilst Caspar was with his grandmother in the waiting room, our lives came crumbling down as they said my tumour markers indicated colon cancer and it had spread to the liver. We weren’t prepared for that conversation. You can never be prepared for this sort of conversation.
My heart sank and I just kept saying “my baby, my poor baby”. I had a panic attack, I couldn’t breathe and all I thought of was our little four month old baby boy. I’ve never really understood when someone says they’ve had an outer body experience, but now I totally get it. It was like I was floating above, watching myself – I had a paralysed state of mind. You always think cancer happens to someone else.
The surgeons were kind and helped calm both Emma and me. I needed an MRI scan immediately, a colonoscopy and chemo as soon as possible. In the waiting room we were met with such kindness and care by the nurse in charge that morning. He comforted us and was able to help us get an MRI within the hour. That was the moment when we realised I had to stop breastfeeding straight away. The last time I breastfed Caspar was in the waiting room, before the diagnosis. It was painful for me and Caspar and Emma. It felt so abrupt and unfair. Everything felt unfair. Luckily Caspar accepted the bottle after 48 hours and then fed like a superstar.
The MRI was done at Kings Hospital and we were then referred to The Royal Marsden, where we met our incredible oncologist and team of nurses. We did a PET Scan, which thankfully confirmed that the cancer had not spread even further. It was colon cancer that had spread to the liver. There were multiple tumors in my liver with one measuring up to 15cm. How I was walking around with these tumors I still don’t understand.
Our oncologist gave me different chemotherapy options, and because I’m so young and healthy we decided to have all three drugs at the same time. This would give me the best chance of survival. I had a colonoscopy and then a port inserted into my chest, to easily administer chemo and take bloods. I started FOLFOXIRI chemotherapy on 20 May 2022. The plan was to complete six rounds of chemo over a 12 week period and to then reassess surgical options and next steps.
Following examination of the biopsies from the colon we were told that my type of bowel cancer had the BRAFV600E mutation – it is an aggressive and fast growing cancer. Although it was shocking to hear this, we have tried to stay positive because there are first and second line treatments available.
On top of chemotherapy I’m also having a targeted therapy called Avastin, which aims to prevent the growth of new blood vessels supplying the tumour.
Side effects…. There are lots, but I am thankful that they are manageable for me. My hair is falling out slowly and I do suffer from peripheral neuropathy, but acupuncture is really helping me manage this. I do get nausea and stomach cramps but I’m able to control it with pain relief.
My first round of chemotherapy was painful, the tumors in my liver were really reacting to the chemo. I found it harder than labour, but again I thought this was a good thing as it’s obviously working. I was on a lot of morphine, liquid and tablets, but I’ve become less dependent on it now, which I’m really proud of. The chemotherapy is doing its job. I had improved blood tests throughout my first six cycles of chemo. My CEA level was at 55, when diagnosed, and it’s now at three – this is a good sign and has kept me motivated.
We are staying positive and are doing a lot of extras to help my healing. On top of chemo we’ve completely changed our diet to a wholefoods and plant based diet (no processed foods, no sugar, no diary, no meat etc.), I do intermittent fasting on normal days and the mimicking fasting diet on chemo days, I go to acupuncture, I do breathing and yoga therapy, I exercise, I meditate, and I work with a holistic naturopathic oncologist to optimise all natural supplementation and life style changes where possible.
In August 2022, three months after diagnosis and six rounds of chemotherapy completed, we rescanned my body and received a lot of good news: the cancer had not spread any further. I had a complete metabolic response and the cancer was no longer replicating; the tumor in the colon was no longer visible and my tumor markers were normal in my blood results. We were so thankful for this news, however… (unfortunately there is a big however…) the tumors in my liver only started to shrink and there was not enough shrinkage for the surgeons to see a surgical option. I need surgery to remove the tumors in order to have a curative outcome.
So we continued with another six rounds of FOLFOXIRI and with rebellious hope that my liver tumors just need a little more time to shrink. End of October came quicker than we expected and it was time to scan again. Did you know that ‘Scanxiety’ is now an actual word? It perfectly defines the anxiety patients feel when undergoing tests and waiting for results. I really felt the fear for these rounds of scans. I was getting tired, the side effects of the chemo were getting stronger, and my mental health was challenged daily with all the scariness that cancer brings – it is scary, big time, asteroid-like scary. I constantly felt like there were huge wet cement bags sinking in my tummy. Most of the time I was not dealing with it well, however the incredible emotional healing coach I work with taught me how to use tapping (physiological acupressure) to help me get through some of the worst moments. Tapping got me through the day spent in hospital getting an MRI, a PET and CT all in one go and it also got me through sitting in the waiting room the following week, waiting for our consultant to give us our results. If you ever see a 39-year-old woman with short grey hair, in a hospital waiting room, randomly tapping her face and hands and breathing out loudly, not caring that others may find her weird, then that’s probably me – please come say hi.
When we walked into our consultant’s office we had all the hope in the world that the tumors had shrunk enough for surgery. Unfortunately, this was not the case. However, in the grand scheme of stage 4 cancer the news was still very good. My scan results were consistent with August’s results – I had a complete metabolic response and the tumors in my liver continued to slowly shrink and change consistency (slowly and only a little). I thought the news of not being illegible for surgery would hit us harder, but we managed to deal with it pretty well. A lot of credit goes to our amazing consultant who was very positive about my overall response and complimented my resilience. This helped me find the strength to continue more chemo.
When we got diagnosed in King’s back in May 2022 the surgical consultant, who gave us our diagnosis, told us to stay in touch while we get treatment at the Royal Marsden. So we did, and went to him in November for a second opinion in regards to potential surgical options. We were ecstatic, it was good news. The consultant believed he was able to perform an ALPPs procedure, which is a two staged liver resection (please google for all the details). He was also proposing to remove the primary colon tumor simultaneously. There were many risks associated with the proposed surgery, in particular as it required me to come off of chemo therapy for at least 4/5 weeks prior to surgery and would mean my liver would not be able to tolerate chemo for at least three months post-surgery, which is very risky with my BRAF600E mutation (a cancer mutation that grows approximately 180 times faster) – fun times….NOT. Regardless of the many risks associated with the proposed surgery we knew it was my only chance to be cured. We had to go for it. I intentionally write “we” here, because it is a decision Emma and I made together, as the possible outcomes have as large of an impact on her and Caspar as they do for me.
So, over the Christmas period we took a break from chemo and prepared for the big surgery, which was meant to take place mid-January 2023 at Kings Hospital. The break from treatment felt good, I got my appetite back, I was gaining weight and feeling stronger. Although we were so thankful and positive about the surgery, I was also scared and the most nervous I have ever been in my life. Who wouldn’t be with lifesaving major abdominal surgery ahead.
In preparation for surgery we had another CT scan and bloods taken, and we met with the surgeon two days before our surgery date to discuss everything one last time. This was the meeting that taught us to be prepared for anything. Very quickly I needed to apply my tapping therapy tool again. Unfortunately, although nothing had changed, the surgeon informed us that he no longer believed he was able to take out all the tumors. Our oncologist was very clear that surgery was not an option unless all tumors could be removed, clean margins are a must.
It was very difficult leaving this meeting, we were devastated. We were aware that the only current chance for a cure is with complete surgical resection. Having hope felt pointless and we fell into a dark space for a little while. Who wouldn’t, right?
We went straight back to the Royal Marsden. Thankfully my blood results were good. Tumor markers were under control and liver was strong.
We allowed hope back into our lives. It is now exactly one year since our diagnosis and we have completed twenty-four rounds of chemo. We have just done recent scans, which all showed continued metabolic response – the disease is maintained, and we will continue chemotherapy every two weeks. Science changes every day and I have to believe that I will respond to treatment long enough to receive a cure for bowel cancer and the BRAFV600E mutation.
Keep fingers crossed for us please and follow us on Instagram (@emmalee_loves) where we continue to share our story to raise awareness. And please reach out to us if you want to talk or have any questions.
