Here Nikki talks about life since her diagnosis, which helps explain why we have chosen to row 3000 miles in the Talisker Whisky Atlantic Challenge…
I have cancer. It still doesn’t seem real. Yet this isn’t just some bad dream; it was the very cold reality that I faced 6 years ago.
The type of cancer I was diagnosed with is a very rare and aggressive form that affects around one in a million people every year. It is called Pseudomyxoma Peritoni.
This kind of cancer is notoriously difficult to detect and people can live for years without a diagnosis. Sadly, some people are diagnosed too late. My journey of discovery didn’t start in the extreme way that one might expect with such a serious condition, but with a few stomach aches and a bit of bloating.
I ignored it for a while and then started to make excuses for why I was in pain…I think I am intolerant to something…I haven’t had enough water today… is it because I’m stressed with work?
2 months of testing and still no answers
We were living in Abu Dhabi at the time. After a few weeks I went to my GP, hoping to be sent away with a prescription but I was referred to a gastroenterologist. When he couldn’t offer a diagnosis I was passed on to another hospital and then a gynecologist. I underwent 2 CT scans, an MRI scan, 3 ultrasound scans and countless blood tests. After 2 months of tests we were back at a gastroenterologist and then, thankfully, a colleague of mine knew the head surgeon at the hospital – he was a colorectal surgeon.
By this point I was completely fed up with not knowing what was wrong with me. I had pretty much ‘Googled’ myself into a state of hysteria but, like most people, cancer was the last thing on my mind. I just figured I had some sort of food intolerance. So to say that my diagnosis came as something of a shock was an understatement. I was 31, I regularly went to the gym, I ate healthily; I couldn’t possibly have cancer. But I did.
Fortunately for me, an experienced doctor had seen a case like mine before. He referred me to a specialist in Basingstoke and within 10 days I was stood at the doors to the operating theatre saying goodbye to my husband, James.
Honestly, I was unsure if I would ever see him again.
9 and half hours in cytoreductive surgery
I spent just over nine and a half hours in theatre receiving cytoreductive surgery (also known as the ‘mother of all surgeries’) and intraoperative hyperthermic peritoneal chemotherapy (heated chemotherapy inserted directly into my abdomen). Although in the end I didn’t receive this due to a complication that arose, which required further surgery to rectify. I’d been through too much for the chemo bath.
The tumor had spread to many organs and the surgeons removed my appendix, gall bladder, spleen, part of my stomach, part of my colon, some of my diaphragm and, sadly, my ovaries and womb.
I was completely unprepared for my recovery. I spent 10 days in intensive care and was completely immobile. Due to the length of the incision (from my breast bone to my pubic bone) I had no core strength and needed someone to help me sit up, stand and walk. I also needed to learn how to manage an ileostomy, which was temporary, as my bowel needed time to heal fully. I received physiotherapy and it took me months to recover physically. However, I found an inner strength and, with the help of my family and friends, I started to rebuild my life.
Three months after my operation, James and I met with my consultant and he decided it would be best if I received six months of chemotherapy – I understood why it was needed but I was devastated. My recovery was put on pause and, instead, I had to put all my energy into fighting the side effects from having chemotherapy treatment every 2 weeks.
It’s fair to say that chemotherapy really pissed me off. I developed mouth ulcers, was extremely sensitive to cold things, felt nauseous, completely lost the feeling in my fingers and toes (I still struggle with complete feeling in my fingertips) and I lost my hair.
After my final treatment of chemotherapy at the very end of August, I left the hospital and didn’t look back.
In October I was free from the chemotherapy drugs and it was time for my ileostomy to be reversed. I spent a week in hospital and recovered well, allowing me time to get myself ready to return to Abu Dhabi after a very different Christmas compared to the one before.
Thankfully my job allowed a phased return back into teaching and so back to work I went. Teaching has always been my passion and I truly enjoyed every moment of being back in the classroom. We enjoyed being with our friends once again and made many new ones too. Our life was for living and we travelled to Sri Lanka, Oman, Ras Al Kamiah and India. James returned to kite surfing and often swam in the open sea. We rediscovered a love for running and both enjoyed the feeling of freedom it gave us.
In Abu Dhabi, James spent a lot of time researching and reading about health but mainly cures for cancer. We both read deeply about various ways to prevent cancer and how herbs, drinks, therapies, mindfulness and spiritual beliefs could potentially hold the answer.
We developed a routine that included yoga and meditation every morning and regular time spent in nature and walking/running in the afternoons. James cooked with as many organic produce as he could. But in the end these routines proved stressful in themselves and quite demanding for a normal life.
With this in mind and a growing fear that something wasn’t quite right again, we returned to the UK.
We put faith in other people to help us
My stomach was growing. We went to many professionals, spent thousands of pounds and put a lot of faith in other people to help us. At one point I was seeing a naturopath; an holistic doctor, receiving acupuncture, having vitamin c IV therapy, seeing a life coach and seeking advice from a herbologist in London. Our mission to heal me became all consuming and we spent a great deal of time looking for that one person who could save me or that one mix of herbs to magically cure something that was already way beyond our control.
By Christmas of 2016 my stomach was bigger again and by the Summer of 2017, I was so big that I could no longer hide it under baggy jumpers and scarves. Ironically I actually looked pregnant. A CT scan and a trip back to see my consultants in Basingstoke told us what we already knew, the jelly had spread once again but this time it was starting to put pressure on my remaining organs. My appetite was nearly non-existent so I was losing weight and my body wasn’t receiving the nutrients and minerals that it needed to work properly. I was also told that the jelly had pushed one of my kidneys out of place and both ureters were becoming squashed, preventing urine draining fully from my bladder. I was admitted to Basingstoke hospital after some concerning results from a set of blood results where they came up with a plan of action. I was then transferred to Southampton hospital for my next procedures. I left with bilateral nephrostomies (small tubes inserted in each kidney that drained urine into a bag each side) and a intravenous PICC line for the purpose of receiving nutrition at home.
Once home again, I continued to deteriorate. The worst thing being abdominal pain that came on whenever food got ‘stuck’ in various parts of my bowel. This pain came on slowly and often lasted between 8 – 12 hours. Inevitably it would end with me being sick until I was eventually sick every night and during the night. I was experiencing acid reflux so I couldn’t sleep lying down, my energy was very low and I could barely walk for more than 10 minutes without needing to lie down. Looking back, these were dark times for us but I rarely think of them this way. I remember the mass of friends who came to visit, with a total understanding that I could no longer physically get to them. I remember seeing so much of our families and I remember a feeling of absolute love.
Just after the Summer James and I met with an experienced transplant team from Oxford. My consultants had been working with this team to pioneer six bowel transplants and I was to be the seventh. After a series of tests and tasks, I was accepted onto the transplant list and went home to pack my bag. The call could come at any time so I made sure I told my family and friends that I loved them at the end of every phone call and waited…
By November 2017 the consultants made the decision that I was too unwell to undergo the bowel transplant and instead, opted for a smaller procedure where they attempted to remove some of the jelly created by the cancerous cells that was now putting considerable pressure on my kidneys, stomach and remaining bowel. I was unable to eat anything at this point and even liquid was struggling to find its way into my stomach and beyond. They drained 7 litres but the jelly returned within a matter of days. I was devastated.
I spent a lot of time contemplating life
It was at this point I spent a lot of time contemplating life. I started to write ideas for my funeral including songs that I would like played and made notes for my will.
We met with the consultants shortly after my surgery and they gave us some good news; whilst draining the jelly they had seen an opportunity to go in once again and remove more cancer and jelly too. So once again I found myself facing cytoreductive surgery.
This time round it was different. I was different. Of course this operation was going to save my life but I was nowhere near as healthy as I was the first time round. Plus I knew what the recovery would be like this time; tubes, drugs, beeping, hallucinations, caring nurses, rough nurses, discomfort… I was definitely more anxious about this operation but my main emotion was fear. I was consumed by a feeling that I may never see my beautiful family again. I started to let myself think about what it would feel like to never laugh again and to never hear James’ laugh again. What would it feel like to never be held by him again? How would he feel to never again be able to hold me?
I also started to think about how we would explain to my young nephew, William, why I wasn’t here anymore if I didn’t make it through the operation. I spent a lot of time thinking up a story where I became a feather so when William saw a feather, he would know that it was me just popping by to let him know I’m looking out for him.
This short time was probably the most challenging part of my life. I continued to stay positive and was adamant that it wasn’t time for me to go but, really, there is no way of telling when it is your time to go.
In January 2018 I said goodbye to my family once more and put myself in the hands of the consultants, anesthetists and surgeons. After 8 hours of surgery I was in recovery and doing well. They had managed to remove about 80% of the jelly, which was so much more than they had anticipated. I spent just over 2 months recovering in Basingstoke hospital and had a constant stream of friends and family offering me biscuits, sweets, cakes and, most important of all, love.
Grateful to be alive
Since then I have healed well. I have surrounded myself with people who genuinely love, care and support us and I feel like I am living a ‘normal’ life once more. Having come out the other side, I am more grateful than ever to be alive. I am making the most of this time when I feel normal. We have been to New York and I ended up writing The Feather book for William. I then wrote two more, found an illustrator and got all 3 published! I am currently spending my time promoting these books within child bereavement charities, hospitals and other places where I feel they will benefit those who have lost someone or who have illness within their family.
I am also starting to be more honest with my feelings and emotions and, in turn, people are being more open with me. Having cancer is scary for any individual but it is also scary for the friends and family of those who have been diagnosed. I did not realise how far my diagnosis affected those around me until I started talking about it and it is so important that these people are supported too.
Support through the Wessex Cancer Trust
James and I both know that we need to have things in place to benefit our wellbeing and have both sought and found support through Wessex Cancer Trust. Wessex have become an essential part of our recovery and acceptance. For me, it is simple; I am the one with cancer and I am developing an understanding that I won’t be here as long as many of my friends. But for James, his future looks very different. Not only is he living a life that he didn’t choose but he has to get used to the fact that one day he will wake up and I will be gone. This is with him all the time; when he’s awake, when he’s asleep and during that quiet time in-between. It also follows him to work; in the confined living quarters and when he’s at the bottom of the deepest, coldest, darkest sea. Being a saturation diver is so difficult and different to any other job I have ever known. To be down there with only your mind for company sometimes must get quite tough.
When James comes back from work he is torn between his duty and want to care for me and his inbuilt desire and need to experience freedom and exhilaration that physical exertion offers him. I completely understand why he loves to run, rides a motorbike, road bike and mountain bike, goes kite-surfing and enjoys Cross Fit. James is a free spirit and the most determined, focused, motivated, dedicated man I know.
I get the feeling I am about to meet three more…