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For as long as I can remember, I have had what I was told was IBS. I seem to remember it becoming worse in my mid 20’s when I was at university studying for a degree. I saw my doctor who wasn’t too worried linking it to the stress of exams etc. Looking back, I never felt like any particular ‘diet’ solved my problems. My ‘IBS’ was not constant and did not seem to follow a pattern but it steadily got worse with diarrhoea being a regular feature in my life as well as bloating. I also suffered extreme back pain once in a while. The pain would come and go so often, when seeing my GP, I was describing a pain that had since subsided so it didn’t create much interest and I was told that perhaps I had a kidney infection and even sometimes prescribed antibiotics. I accepted the diagnoses as I have always had absolute faith in my GP and as I had nothing to compare my pain to, I did not push for any investigation.
In 2005 I went to my regular GP and explained that I had started having flushes when I drank alcohol. I also mentioned tiredness and that my glands in my groin were raised. I did notice slight alarm in her face so when I went to see a haematologist the following week on her referral, I was a little anxious but again I was reassured that everything was fine. My blood tests were all completely normal and my hormone levels as they should be.
My flushes, tiredness, diarrhoea and IBS-like cramps continued over the years. Every now and again I would mention my issues to my GP. I would always be reassured. I clearly remember saying to my GP ‘as long as you don’t think it’s anything sinister?’ to which she replied ‘no, absolutely not, not at your age’. I should mention that I am and always have been very fit. I have always worked in the fitness industry and although now office based I teach regular classes and at the time thought nothing of exercising 6 or 7 times a week. I have always been slim, eaten healthily and rarely got a cold, let alone flu or viruses. I just seemed to have a weak point in my digestive system which no one thought was a problem as otherwise I was the picture of health! In November 2010 I developed a new pain just below my sternum which was waking me up every morning at 4am. I again visited my local surgery and was told it was just my IBS and given a print out on foods to avoid.
The pain continued and in February 2011 I woke at the usual 4am and whereas I could usually manage a fitful sleep with painkillers and a hot water bottle, this pain did not let-up and by 5am I was in the bathroom on my hands and knees with pain that was starting to feel out of control. My boyfriend started to panic and when he offered to take me to A&E, I accepted. When I was seen by a doctor I was diagnosed with gastroenteritis, given morphine and told I could go home. After one more similar episode which I managed to see out at home I took myself to my local surgery again. I was prescribed something to deal with excess stomach acid.
In June 2011 during another extreme episode of pain I called NHS direct after failing to reach my partner and an ambulance was called when my stomach became distended and I started being sick. After another A&E visit where I was told that I had another bout of gastroenteritis, I saw my GP and pressed to be referred. In August I finally saw a doctor at Bournemouth Hospital who thought my digestive problems were irregular and should be investigated further. I had various tests including a colonoscopy which despite seeming to be normal at the time returned some devastating results. I had a neuroendocrine tumour in my bowel. Initially I was told this was not cancerous but it would need to be removed. At the next appointment I was told that it was ‘a type of’ cancer and it was very serious. I was 34 years old. Apparently the flushes were a symptom of carcinoid tumours (carcinoid syndrome), the type of neuroendocrine cancer I had. Instantly I knew I had had this cancer for a long time and although being reassured in this appointment that was not the case, I was later told by my surgeon that it was and I had probably had it for 15 years.
The next few weeks went very slowly. I had various scans to ascertain at what stage my cancer was at but no one could tell me what happened next. I suspected that I was already at an advanced stage given that I had been having symptoms for years and my mind was in overdrive but the rarity of my cancer meant that my treatment plan was being discussed in meetings and I had to wait to find out what options I would be offered.
At the end of October, still unsure of my situation, I did the 10 mile Great South Run and raised £1000 for Macmillan. I set myself the target to run it the following year in a similar time.
In November, four weeks after my initial diagnosis, I had an appointment at Southampton Hospital with Mr Neil Pearce. Mr Pearce explained that I had a Neuroendocrine tumour which was a very slow growing type of cancer and that it had spread from the primary tumour in my bowel, into my abdominal cavity (around my peritoneum), over my bladder and into the local lymph nodes. Mr Pearce told me he could not cure me but he could manage my cancer, hopefully for decades. He quickly moved onto the surgery he would be performing and told me he couldn’t remove everything but he would remove, hopefully, 90% of my tumours. He also added that my surgery would ‘knock me for six’ and that I would need further surgery in years to come. The appointment was over quickly as I had been squeezed into his patient list that day. I was left with my boyfriend and a nurse to digest the information. Initially I felt shocked that my life was definitely not ever going to return to normal, quickly followed by relief that I was still going to be here in 12 months’ time. I slept for the first time in weeks. The next day it slowly dawned on me that I might not grow old.
During this time I had a series of tests including an Echocardiogram to check my heart structure (carcinoid syndrome can result in carcinoid heart disease) and started Octreotide injections to deal with the carcinoid syndrome and prepare me for surgery.
I had my surgery in December 2011 at the Spire, Southampton. My operation was 8 hours. Mr Pearce was right; it did knock me for six!! The 4 days after my surgery were, physically, the hardest of my life. I cannot describe how it felt to enter the hospital with a few issues but mostly feeling fit and well to then wake up after surgery in HDU attached to numerous tubes feeling more poorly and weak than I ever have in my life! Mr Pearce had managed to remove 100% of my (visible) tumour bulk which was more extensive than the scans had initially shown and was extremely pleased with how the operation went. My fitness finally served me well and I went home on December 22nd just 9 days after my surgery with a nine inch wound on my abdomen. I have had better Christmas’s!!!!
I am now 15 months on and doing well. I feel better physically than I have in years and no longer suffer any pain. It’s been a long road but in October I ran the 10 mile Great South Run faster than I had run it the year before – pre-surgery. I had achieved my goal and managed to rope in 18 friends to run with me. We raised £8000 for PLANETS and it was a great positive day.
You never think you will hear the words ‘you have cancer’ and it’s tough to wake up in the morning with that knowledge, especially when your physical fitness is such an important part of your life as it is mine. It is not all negative though. After my surgery I felt extremely lucky to have such amazing family and friends and the love I felt from them was overwhelming. The nurses that looked after me at the Spire were unbelievable, extremely kind and dedicated and I realised that my job was an absolute breeze compared to what they do every day! I appreciate life and health and the people around me more than ever and my illness has given me a different perspective on life. I know what is important and what isn’t, this quickly becomes clear when you are diagnosed with a life threatening illness. I feel lucky to have been referred to an amazing team of nurses, doctors and surgeons at Southampton hospital, in particular my surgeon Mr Neil Pearce, and I know I am in the best hands I could hope to be. The reality is that I am now safer than I have been in all the years I have been suffering undiagnosed. I will now be monitored and managed and I hope to exceed the prognosis I have been given. Medical science is improving all the time and I feel grateful that I have been given the time to take advantage of any developments by my surgeon and his team. For now, I live day to day and try not to think about what my future holds, after all, none of us really know what is round the corner! In the meantime, I’m concentrating on keeping myself fit and healthy and putting myself in the best place possible to cope with future surgery or treatment. I have also become involved with PLANETS charity with a view to being proactive about improving awareness, diagnosis, treatment and the facilities at Southampton hospital as well as giving something back to the team that has looked after me so well. My family and friends have supported me in this and so far, between us, we have raised over £27,000 and had a bit of fun in the process!
I am now coming up to 4 years since my diagnosis and feel that I should update my story! To date I have had no further treatment which is a great testament to the surgery I received at The Spire in December 2011 with Mr Pearce. I am pain free and pretty much symptom free although I have made small changes to my diet. I continue with my Sandostatin (Octreotide) injections on a 4 weekly basis. I am probably the fittest I have ever been in my life, training 6 times a week – running, teaching my classes, CrossFit etc.. I am very aware of my health situation and do not take these treatment free years for granted. I am extremely grateful to the PLANETS medical team that have allowed me this precious time but feel that keeping myself strong and healthy is the best way to deal with my diagnosis. I know I am very lucky to have such great quality of life and feel that is important to share this to give patients that are newly diagnosed a little hope that they may too return to some kind of normality. I have continued to be heavily involved with PLANETS which gives me a fantastic, positive focus and i’m really proud of what we have achieved over the last few years. The last event I physically took part in was Tough Mudder, a 10 mile obstacle course which I organised and managed to get 27 others to take part in with me, including the majority of the PLANETS medical team – what a day! It was great to be part of a team that included doctors and nurses that have looked after me and we had a blast, it was tough going at times but we raised £10,000! There is definitely life after a NET diagnosis!
I am currently recovering from a 7 hour surgery. It has been an eventful 18 months, starting with the removal of my gallbladder (my Sandostatin shots had resulted in me developing gallstones) and the discovery of some new disease in my peritoneum in the process. Surgery to deal with the disease was scheduled for January 2018. My recovery from my gallbladder removal was slower than expected. Despite it being a relatively small surgery, my digestive system took a long time to get used to the change. Once this had settled down, with the help of medication, I worked hard to get fit again with a view to preparing for the bigger surgery to deal with my new disease. I was extremely apprehensive about this third surgery, being more informed than the first time and knowing what was to come! However, despite a tough few days in HDU and then on the ward at the Spire, I left hospital feeling pretty good and have recovered well and quickly since. Again, I feel that my fitness has served me well and i’m looking forward to getting back to work, exercise and enjoying my life! The surgery was a success, again all visible disease was dealt with and I should be able to get back to the great quality of life that I was enjoying before this latest surgery. As always I remain positive about my situation and feel extremely lucky to be looked after by the incredible PLANETS medical team.
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