In November 2013, at the age of 32, I had just had a career change after being made redundant and had plans to go on extended travels the following year when I mentioned to my boyfriend that I had experienced bleeding when I went to the toilet that had persisted for a few days on a number of occasions.
I wasn’t one to bother doctors with little things but he suggested I go and see my GP; she was concerned enough to recommend I get a colonoscopy despite having IBS, which wasn’t standard practice. As I was planning to go travelling, I opted to go private as I would have a shorter waiting period.
About a month later I suffered through the prep for the colonoscopy while my boyfriend’s parents were over for dinner and went off for the procedure the following day. When I came around from the procedure I had to wait quite a while before the gastroenterologist came to talk to me; looking back, he was waiting until my boyfriend arrived for support.
I was then told that he had removed three polyps from my bowel and that there was a 20% chance that one of them was cancerous; I know now that the numbers were actually reversed but that he was giving me a chance to get used to the idea. I was told to go away and make an appointment for the following week.
The next day I had an answering phone message bringing my appointment forward to the following day, which I found myself confirming as I wasn’t expecting the results back so quickly. The gastroenterologist told me that one of the polyps was cancerous and had probably been so for about a year.
Due to it being removed in two pieces, they weren’t able to confirm whether or not all of the cancer had been removed. He had already spoken to the colorectal surgeon who shares the same rooms and I was taken down to meet him straightaway; I figured out afterwards that specialists only make appointments that late when they need to. At the time I remember asking lots of questions but I was in a state of shock and worried about my parking ticket running out (the small things).
Things happened very quickly over the next few days: I had a CT scan to check for any spread of the cancer and was then back visiting my surgeon to discuss a date for my bowel resection. I have come to respect my surgeon for his honesty, professionalism and desire to take the most appropriate course of action and recommend that anyone in a similar situation ensures they feel comfortable with their medical team.
By this time I had my head together a bit more and was able to get all of my questions answered. My meeting with him was followed by an appointment with the stoma nurse to discuss the potential for a stoma creation and to have possible locations marked on my stomach. As my surgery was scheduled for a month later to allow the inflammation from the polyp removal to subside, I spent the Christmas period proudly sporting and redrawing my marker pen crosses. Little did I know at the time that if you met with that particular nurse then it was highly likely that you were going to end up with a stoma.
In January 2014 I went into hospital for my first ever surgery and spent an unexpected 5½ hours in theatre undergoing a laparoscopic ultralow anterior bowel resection and J-pouch creation that was complicated by my pelvic kidney. It turns out I had plenty of observers due to this. I remember coming round briefly in recovery to hear my surgeon saying that I had a bag.
At the time this confirmed my worst fear about the surgery. That night was the most painful in my life and no amount of painkillers seemed to take away the pain. The pain improved the next day, aided by a morphine button, but I spent a couple of days confined to bed with tubes connected everywhere and in denial about the bag that was attached to my stomach; refusing to deal with it or even look at it until my surgeon told me that I wouldn’t be able to go home until I was able to manage it myself.
Fortunately I had the most amazing stoma nurse who recommended that I name my ileostomy stoma in order to give it an identity that I could get frustrated at. Pumbaa, named due to its farting, and I became very well acquainted over the next 8 months although I still remember my fiancé and I holing ourselves up in the bathroom at the hospital to change the bag for the first time and feeling completely exhausted afterwards. Over time I got the hang of managing it though and went away on a few trips, went horse-riding and even went swimming with it.
Although there were still the un-fun times like touching it at 5 in the morning to check for gas and hearing the tell-tale squelch meaning that it had come unstuck and I needed to run for the shower to wash off all of the poo.
I spent about 8 days in hospital recovering from the surgery and had forgotten about my removed bowel being sent off for testing as my surgeon had said that he was confident that it had looked healthy. After a week my surgeon and an army of followers found me wandering the ward one day in search of someone to fix my TV remote, which he duly did to get me back in my room as he needed to give me the news that my bowel had been healthy but that cancer cells had been found in one of the 14 lymph nodes that had been removed (fortunately it was a lymph node close to the bowel, suggesting that it may not have spread further).
He had already referred me to an oncologist who came to visit me later that day to recommend that I undergo chemotherapy as a course of preventative action due to my young age. At our request he also referred me to undertake a course of IVF to freeze embryos before the treatment as we had been planning to try for a baby and didn’t want to take any chances. At first the doctors were just worried about getting me in chemotherapy as soon as possible, but were happy to delay it for me to do the IVF.
The next eight months were a blur of endless hospital visits for the IVF, infusaport insertion and chemo. I underwent fortnightly infusions of FOLFOX for six months through the infusaport, which involved one infusion for a couple of hours in the hospital and then another for about 46 hours at home.
Unfortunately, I had a reaction at the end of the first dose of oxaliplatin in the hospital, my throat tightening and my hands and legs cramping, so subsequent visits involved most of the day being spent at the hospital as I was given antihistamines, calcium and magnesium to reduce the side-effects. At least the phenergen caused me to sleep through most of that and I only had one treatment postponed due to a bacterial infection. I had also been given good financial advice previously and was lucky not to have to worry about money as I was able to claim on both trauma and income protection insurances.
I was fortunate to attend a Look Good Feel Better session soon after starting chemo that not only gave me a break from everything to be pampered, but also introduced me to Emma, one of two young female bowel cancer patients who were going through the same treatment at the same hospital as me.
We became cancer buddies and supported each other through the tough times as it really helped having someone who understood how you were really feeling. I even remember going along to one of her chemo sessions for company after I had finished mine, which caused some confusion to the nurses! Unfortunately I never met the other girl and found out that she ended up passing away.
As soon as I finished chemo I went off for tests to confirm that my J-pouch had healed (not a fun experience) and was back in theatre as soon as possible to reverse my illeostomy and remove my infusaport (my surgeon was confident that I wouldn’t be needing it again).
Unfortunately my illusion was quickly shattered that this was the end of my treatment as it took some time for my bowel control to return and I was afraid to leave home for a while. Things did improve though with some small dietary changes and an acceptance of needing to find a toilet quickly; this became a bit of joke as I always knew where the toilets were wherever we went! Six months later I finally headed off travelling. Actually, 3 months after my reversal I was riding a motorbike off-road around Vietnam!
2014 was probably the worst year of my life, but I survived it, and five years on some of the details are a bit hazy. Telling my parents in the UK that I had bowel cancer over Skype was a horrible moment, especially I had to wait while they told me that Mum had been given the all-clear after surgery to remove kidney cancer before I could share my news; I also hadn’t told them that I was having the colonoscopy. At the time I was mortified about having an ileostomy, but I created a private Facebook group to get support from friends and family and became very open about discussing Pumbaa’s behaviour, which removed any feeling of embarrassment. I’ll be honest, chemo isn’t fun and oxaliplatin is a pretty horrible drug, but I was only ever nauseous and didn’t vomit and I just holed up at home during my treatments.
I couldn’t touch, eat or drink anything cold for a few days following each treatment and my good days in the cycle got less and less over time, but the oncology nurses were amazing and I slowly made it through everything. Having Emma for support helped me a great deal and I also made the most of the support services provided, attending counselling, alternative therapy sessions, yoga and a wellness retreat, all to make me feel better and all for free; I was almost sad when I couldn’t attend anymore as these definitely got me through the hard times.
Five years to the day after being diagnosed with Stage 3 rectal cancer, I took my baby daughter home from hospital to join her two-year-old brother. Once I am ready to bottle-feed her for a day I will be having what will hopefully be my final CT scan after five years of being cancer-free. There was a brief scare with a shadow on my liver and lots of tests that found it to be nothing serious, but otherwise I am doing great and was able to conceive both of my children naturally. I don’t have complete feeling back in my toes, I have quite a few scars from surgeries and I have unpredictable bowels that can cause me to need to find a toilet in a hurry, but none of that stops me from doing anything except maybe balancing on one leg for any period of time.
I have been very lucky to have been treated by an amazing set of doctors and nurses who have always taken the time and answered all of the questions that I turned up with written down, meaning that I always felt in control of the situation. I wish that someone had told me though that the end of treatment was not going to be the end of cancer in my life. During chemo I just kept focussing on the end and was so relieved when that time came, but then I felt lost because I was suddenly without all of the regular appointments and opportunities for support; I was back out in the real world and on my own to recover. The first six months or so after my treatment finished involved getting used to my new bowel behaviour, regaining energy and motivation after chemo and going for follow-up tests. The tests are now less frequent but I will never be able to escape cancer; every time I have to go for a test I get anxious and every time I drive the route towards the hospital I am reminded of all of the visits for chemo.
My treatment has also had other implications that I didn’t anticipate at the time. Although I was able to conceive naturally, I was advised to have a caesarean for both of my children due to the increased risk of incontinence if I were to suffer tearing during childbirth. My son was born at 35 weeks after I went into pre-term labour and my daughter was born electively at 37 weeks after she stopped growing. My obstetrician’s conclusion is that my body can’t carry to full-term due to the chemo. I am however lucky to have two healthy children, even if they will need to start screening for bowel cancer when they are 21; Happy 21st kids!
My advice to other women would be to arm yourself with as much information as possible, ask every question that comes to mind even if you think it is stupid and take every opportunity for support that is available. Cancer may define your life for a short period and stay with you forever, but it doesn’t have to define you forever. Five years on I now feel ready to share my story and support other young women who are going through the same experience and may not be as lucky as I was to have found Emma.